Welcome – introduce yourself here

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This topic contains 216 replies, has 77 voices, and was last updated by Profile photo of Adrienne Gruberg Adrienne Gruberg 3 months, 2 weeks ago.

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  • #20508 Reply
    Profile photo of Cori Carl
    Cori Carl
    Keymaster

    Our community is growing every day! If you’re new to The Caregiver Space, please take a moment to introduce yourself here.

    If you’re already part of the community, please join us in welcoming people.

    We’re here to create a safe space to support each other.

    (To see the most recent introductions, or to leave yours, scroll to the bottom of this page or hit [Ctrl]+[End] to jump there on a PC ~ [Command]+[down arrow] on a Mac)

  • #20545 Reply

    Dawn_Snider
    Participant

    Hi my name is Dawn and I was the primary caregiver for my Mother increasing in time and effort over twenty years. Most recently, I was there with her every evening and all day on the weekends. Since December 15, 2014 her decline was rapid. She died suddenly March 27, 2015. She wasn’t even so sick that I thought she would pass away. She had a heart attack while on an unmonitored floor in the hospital. I just found this site, wish I could have found it long ago. No one understands what it means to be a caregiver until they walk those shoes. Now that my mother is gone I have this huge void in my life. I cry all day on Sundays. I don’t know what to do with my time in the evenings. I feel guilty for moving on with my life. I know I should not feel guilty, but I do. I see this a cycle of sorts. You find yourself overwhelmed with feelings your life has been stolen, depression and resentment while caring for your loved one. Then feelings of guilt of moving on without your loved one when they pass away. This life process has taught me many things and reinforced the need for long term insurance for myself. I purchased my insurance years ago and pay a little over $125 monthly. Many things will fall by the wayside before I ever let that insurance lapse. I do not want anyone close to me to walk the shoes I did with my mom. Yes I was tired, yes I was somewhat resentful, and I was definitely ANGRY with my siblings. Even with all of that, I have no regrets for taking care of my Mom. She never lacked in care. And I loved her so much!

    • #20613 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Welcome, Dawn. You are indeed in the right place. Don’t hesitate to start your own thread about what you’re going through, or join one of our support group chats. I’m confident you’ll find the community here that you need.

      – Liz

      • #26960 Reply
        Profile photo of mimi
        mimi
        Participant

        could you tell why support groups online are posted but not all seem to be activated?

    • #21117 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Dawn –

      I want to welcome you too. I can so relate to the void left when someone you have been caring for diligently, passes away. When my husband was sick with lung cancer we knew it was only a matter of time. In our case it was 5 1/2 years, but you live with the knowledge it going to happen and every day you know the time is getting closer.

      I would fantasize about what I would do when he was gone. I dreamt of creating this site and I am so grateful that I have. After about six months of grieving, I decided it was time to move forward with it. It filled the hole left in my life. I took care of him and his 92 year old mother so when they were gone, it was a huge void.

      It gets better. Your loss is very new. We have a bereavement support group at 10 pm on Thursdays and you might want to try joining in. Sharing helps a lot. So does giving yourself permission to grieve in your own way in your own time.

      I look forward to you becoming an active member on the site and hope it helps you fill the void.

      Hugs – Adrienne

      • #21172 Reply

        Dawn_Snider
        Participant

        Wow Adrienne I’m so glad I’m not the only one who would imagine what it would be like after she passed! I never told anyone, because I thought people would think I was morbid. Funny, it has been nothing like what I imagined. It’s been way worse! Sunday’s are my worse days, because I was there all day every Sunday. So I feel the void more. I have several voicemails I found. I listen to the over and over. Tomorrow it will be a month. I’m so tired. Praying for the day when the grief gets easier. Thank you for your reply. Glad I’m not alone!

        • #21174 Reply
          Profile photo of Adrienne Gruberg
          Adrienne Gruberg
          Participant

          Dawn –

          I am so glad my post resonated with you. Grieving is not something that has an expiration date, and what you’re going through is very healthy. Some people try to get through the loss of a loved one without letting themselves really feel the loss. I will never stop grieving for my husband. The painful part is over, but now and then when I find something of his, there’s a ping of grief. Heavy sadness for a moment and then appreciation that I cared enough to still experience his loss.

          So yes, it will get easier. It’s an experience you go THROUGH and come out the other side healthier and more balanced.

          So glad you’re participating on the site and that you see that your experience can help others.

          Hugs to you, Adrienne

        • #21176 Reply
          Profile photo of Adrienne Gruberg
          Adrienne Gruberg
          Participant

          Dawn –

          I am so glad my post resonated with you. Grieving is not something that has an expiration date, and what you’re going through is very healthy. Some people try to get through the loss of a loved one without letting themselves really feel the loss. I will never stop grieving for my husband. The painful part is over, but now and then when I find something of his, there’s a ping of grief. Heavy sadness for a moment and then appreciation that I cared enough to still experience his loss.

          So yes, it will get easier. It’s an experience you go THROUGH and come out the other side healthier and more balanced.

          So glad you’re participating on the site and that you see that your experience can help others.

          Hugs to you, Adrienne

  • #20558 Reply
    Profile photo of tammey62
    Tammey Hoyt

    Hi my name is Tammey I’m currently staying to care for my husband. He has several medical issues and some days are better than others. He can still most things for himself. My main concern is when he gets dizzy and falls. I’m so glad I found a community to listen to me.

    • #20612 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      glad you found us, too, Tammey. Welcome!

      — Liz

  • #20610 Reply
    Profile photo of Liz Imler
    Liz Imler
    Member

    Hello! My name is Liz. Sorry it’s taken me so long to introduce myself, but I wanted to say “hi” as the new Community Manager here at The Caregiver Space. Please don’t hesitate to reach out to me for any of your site and community-related needs:

    liz[at]thecaregiverspace.org

    A little about myself: I’m a self-proclaimed computer nerd and writer, and was particularly drawn to this community because of its vibrancy and the awesome support system it provides. I’m originally from Virginia, and split my time between there and New York.

    My caregiving experience is part self-related and part family-related. I got help for my own addiction and depression following my brother’s two suicide attempts, and have turned my life around. I use my current place in life as an example to my brother, in hopes he will continue on his road to recovery for his own PTSD, addiction, and mental health issues. He is currently getting his master’s degree! The guy has been through a lot for a 34-year-old. It was when I helped myself that I could better take care of my family by setting a positive example and continuing to reinforce that with my own behavior.

    I’ve loved reading your stories so far, so please keep them coming! And again, don’t hesitate to reach out to me on here or via e-mail!

    — Liz

    • #25555 Reply

      Tommytucker
      Participant

      I just read your intro Liz and just wanted to say CONGRATS to both you and your brother. It is a tough battle(I Know). Be proud of who you are, how far you have come and stay strong.

      • #25563 Reply
        Profile photo of Liz Imler
        Liz Imler
        Member

        Thanks so much for the kinds words, Pattie 🙂

  • #20660 Reply

    euphoria5000
    Participant

    My name is Honey. I am finally accepting the fact that I am a caregiver. My mother suffers from several health issues, both physical and mental and I have fallen into the role of her caregiver. Her health is deteriorating and it is becoming increasingly difficult to see the woman who has been my best friend my entire life become someone I no longer recognize.

    The toll this is taking on me mentally and physically is immense. It is affecting my relationship with my partner, and worst of all, it is turning me into a less-than-great mom to my own 7 year old daughter.

    I already feel better just knowing I now have a place I can come when I am overwhelmed and just need to vent. You people are all awesome!

    • #20723 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Welcome, Honey. Thanks for introducing yourself. I’m glad we can be here for you during this challenging time!

      Please don’t hesitate to reach out to me and don’t forget to check out our support groups and other forums.

      – Liz

    • #21180 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Honey –

      I just wanted to check in with you and see how you’re doing. You have a lot on your hands and I hope this site continues to be of help. If there’s something special you need feedback on, feel free to post a question, start your own topic and get some ideas on how to handle your situation.

      Look forward to hearing from you.

      Adrienne

  • #20748 Reply

    Vivian Burrell

    Hi My name is Vivian been a caregiver for my parents for the past 12 years, my father past away about a year ago, now I am the primary caregiver for my mother, which I do not regret any of it but it can be very hard at times and I’m glad I discovered this site. I feel so alone sometimes and it helps to be able to know their are others in your shoes as well.

    • #20766 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Welcome, Vivian. Thanks for introducing yourself. I’m glad the community can be here for you. Let me know if you need any help perusing the site.

      — Liz

  • #20779 Reply
    Profile photo of Marie McMullen
    Marie McMullen
    Participant

    Hello, I am Marie. I joined some time ago, but kind of neglected to come back. I did post once or twice. But let me reintroduce myself. I am married to Rick, who has diabetes and some other issues. I have to do some caregiving with him. I am also a paid caregiver for a woman with Cerebral Palsy. She lives independently, with two housemates, also disabled. They each hire their own staff. I work with her during the day on weekdays. I help her out in the community and with personal care. It can be challenging to be a double caregiver, as sometimes I feel overwhelmed by being on all the time. But I hope this place can provide some support…and I can be a support back.

  • #20803 Reply
    Profile photo of Liz Imler
    Liz Imler
    Member

    Welcome, Marie. And thanks for revisiting. We’ve got great new ways to reach out to peers here, as well as article resources to peruse.

    Thanks for taking the time to reintroduce yourself, and let me know if you need help navigating anything on TCGS.

    – Liz

  • #20888 Reply

    Sharleen

    Hi I’m a 39 year old wife/mum/carer my caring role started before our son was born as we knew he was going to be born with Lissencepaly was told he may not live past 2 years he is now 3 months away from being 20 he also has co and spastic quadriplegia and is gastro fed he is such a healthy young man with I admissions to hospital for 9 years now….. I’m also kind of a carer to my husband who suffered 20 years memory loss due to hear stress 5 years ago so he has had to rebuild our relationship and with our 4 kids as all memories of us were taken

    I’m happy to be the carer of the family but have no real friends all of them live over 2 hrs away and there is very few since we moved away 15 years ago I’m shy don’t get out and never seem to meet anyone I can build a friendship with we live in a rural area with no real neighbours to even talk to would love to get a job but have no confidence after being isolated for many years I seem to take kids to school and deal with their dramas 2 with adhd and that wears me down and makes me want to be home which then I get bored and loneliness sets in seems to hit me more now the 3 other kids are teenagers and aren’t home much it’s just me Internet and tv my son has day options for 6 hrs each day for a break but even he is non verbal so when home I still feel alone

    So glad I found this site so I can read others posts and not feel alone and hopefully someone understands my feeling

    Keep up the awesome work you do as a carer as it’s appreciated even if not said

    • #21011 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Thanks for introducing yourself, Sharleen. We’re glad we can be here to provide tips, resources, and connections to other carers.

      Welcome!
      Liz

  • #21170 Reply

    Erin Musgrove
    Participant

    My name is Erin. I am married to a Navy veteran that was in a serious accident 2 and 1/2 years ago after safely returning home from his last of tour to Afghanistan. He broke all 4 limbs, had a brain injury,broke ribs,broken back. He has since healed as well as he will be able to. He currently is waiting for surgery to further repair the damage done to his arm and leg that was the worst of the 4 limbs. He has been approved for disability because he is unable to sit or stand for long periods of time. He also suffers from PTSD stemming from everything serving overseas to his accident. He has tried to commit suicide 3 times in the last 2 years and used to use drinking as his source of self-medicating. I work a full time job as well as being his caregiver. I hardly ever get time for myself, just the time before he wakes up is my rest and relaxation period. I cannot wait to get to know some of you better to get advice on how to get everything taken care of

    • #21171 Reply

      Dawn_Snider
      Participant

      Erin have you applied for Aid and Attendance for your husband? Is he 100%? I work for VA Benefits. If you need help send me an email, fireladee2002@yahoo.com. This is not my primary email, however, I will look for a response from you. There may be more benefits your husband is entitled if he is service connected.

      • #21262 Reply
        Profile photo of Liz Imler
        Liz Imler
        Member

        Dawn — thanks for helping your fellow community members. You’re setting a great example of the support we intend to keep nurturing on CGS 🙂

        — Liz

    • #21228 Reply
      Profile photo of Cori Carl
      Cori Carl
      Keymaster

      Erin, that’s quite a life change to be dealing with while suddenly having so many responsibilities to juggle. I’m sure others here are going through similar things, unfortunately – you’re among friends here.

    • #21238 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Erin –

      Welcome to our community. I believe that if you keep signing on and looking for connections, you’ll find others who you can relate to. And…read our articles. Oh, and there’s a great online support group on Tuesday nights for Spousal Care. You’ll definitely find people there to connect with.

      Good luck – in all that you do. And thanks – for all that you do.

      Adrienne

    • #21261 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Thanks for introducing yourself, Erin. My brother also attempted suicide twice after returning from Afghanistan. Like your husband, my brother also self-medicated with drinking and drugs. I’m glad you’re willing to reach out for support — like Adrienne and Cori said, you’ve come to the right place.

      Let me know if you need anything —
      Liz

  • #21305 Reply
    Profile photo of Pam
    Pam
    Participant

    My name is Pam. I would love to participate, but I am getting phishing emails and private messages from someone who apparently registered here specifically for that reason. My story is long, boring and sad but I am being cautious. I did the “contact us” tab and sent a copy of the email, but haven’t gotten a reply.

    “Her” name is “Rita Davis”. It is the typical inherited money from a relative and needs your help investing it. If anybody here is not familiar with that type of email, please, please ignore and delete it.

  • #21317 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg
    Participant

    Pam –

    Thanks so much for joining our community. I’m so sorry to hear that there’s someone “phishing” on the site and I’ll send your post on to someone who knows how to deal with it.

    If you’d like to contact me directly, my email is adrienne@thecaregiverspace.org and I’ll be happy to read anything you send and make sure it’s confidential. After I read it, we can figure out the best way for you to participate in the various features we have to help our caregivers.

    Sorry for the bother. We’ll block her.

    Best – Adrienne

  • #21420 Reply
    Profile photo of Rachael
    Rachael
    Member

    Welcome everyone! Thanks for joining us, it’s good to have you here. I’m Rachael, I write blog posts and moderate forums for this lovely community, I’m a soon to be college graduate and I’m really excited about that.

    If you are yet to introduce yourselves, especially those of you that are just joining us, please do so. We would love to know who you are, and welcome once again to The Caregiver Space!

  • #21824 Reply

    Kim

    Hi I’m Kim. Dad passed of cancer two months ago and I was his primary caregiver. Mom has Alz and went off the deep end right after, told everyone I wanted to kill her and other horrible things. I’m an only child and am still wading through dads papetwork, trying to console mom. Dad wanted me to live with her but I’m legally blind and I just can’t stand it, she relived it over and over then when I cry gets mad. I have a one story house on fort Myers which will be finished in August and hope to eventually move mom there , there are many resolved for visually impaired and elderly people. I miss my father terribly and miss mom too.

  • #21836 Reply
    Profile photo of Liz Imler
    Liz Imler
    Member

    Welcome, Kim. I’m glad you’ve joined us during this difficult time. Our community can be a great place to come to for support. Here’s a link to our forums, which are a great place to connect with people going through similar things:

    http://thecaregiverspace.orgcommunity/forums/

  • #22736 Reply
    Profile photo of Eileen G.
    Eileen G.
    Participant

    Hi everyone, I’m Eileen. I’m 35 and am the primary caregiver for my husband Larry. In addition to managing several chronic conditions, Larry had a heart attack with cardiac arrest in February, 2015. 67 minutes of cardiac arrest resulted in an anoxic brain injury. All things considered, we are very lucky. But it’s still hard and every day is different.
    Physically Larry looks almost normal, except for a slight problem with his coordination while walking, especially as he gets tired. But cognitively, he’s very different than he was. His short term memory is gone. He rarely remembers things that happened within the past 1 to 10 hours. He almost never remembers things that happened less than an hour ago. His ability to put past events on a timeline is gone. He has patchy long term amnesia over the last 10 years, including the memory of us marrying. His movements and reflexes are slower, requiring extra time to get things done. He’s having to re-learn about his medical conditions and it scares him because his memory thinks he was healthy only a few months ago, when in reality he already had things going on.
    Technically it’s still too early for the doctors to say with 100% certainty, but he is likely permanently disabled. He spends 30 hours a week in a brain injury rehabilitation program. Some days he comes home and it’s been a great day. Others, he comes home frustrated and thinks he isn’t making progress because he doesn’t remember the condition he was in to understand how far he’s come.
    I’m fortunate to have people around that are supportive, but it’s still exhausting. Right now the hardest part by far is that people, his own family included, see him and think he looks great and can’t (or wont?) make adjustments to help lower his agitation (like turning off a tv or phone noises when he’s overstimulated). He’s often left with no choice but to remove himself from an environment and it leaves him (and me) feeling isolated. I know people don’t mean harm, but it’s hard to watch him go through those frustrations at a stage that really is early in his recovery.

    • #22759 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Thanks for joining us and introducing yourself, Eileen. It’s moving to hear your story and witness you taking the time to reach out for support. You’ve come to the right place. Our forums are a great peer support system, and you might just find people here understanding you much more than others, since they share in similar caregiving experiences.

  • #23256 Reply
    Profile photo of mj
    mj
    Participant

    Hi im Maryjane, my little boy is 3 and just recently been diagnosed with autism. He doesnt speak, has no sense of danger and very hyperactive so he keeps me very busy. I know there is a lot of help available but i find it difficult as i dont trust anyone to look after him properly due to the no sense of danger thing. It so hard as i do get exhausted but hes worth it.

  • #23449 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg
    Participant

    Maryjane –

    Welcome. You’ll be glad to know we have a strong community of autism caregivers. Our articles are excellent as well.

    I recently met with a women from Calgary who has started a company for special needs children called CareVine. Carevine.com provides a well organized, accessible software system that communicates about best care practices as it supports consistent care for people of all ages. Many parents have your concerns when it comes to having others care for their children. Dr. Sheila Mansell came up with this idea so that there would be a registry of behaviors and concerns specific to children as well as their meds, etc. Have a look. It might help you feel more comfortable when you need to leave him with someone.

    In the meanwhile, read our blogs, join our forums and get connected with other parents like yourself.

    Hugs – Adrienne

  • #23499 Reply
    Profile photo of
    Anonymous

    Hello, my name is Cristina and my husband Tom has been fighting esophageal cancer for three years. He had an esophagectomy in July 2012. First post-surgery scan three months later showed metastasis to liver. More chemo but liver resection not possible because liver too small to regrow. He was in remission from April 2013 to May 2014 when a brain tumor was found. Craniotomy in June 2014 and whole brain radiation in July. In remission again until March 2015 when lesions in the brain were found and Cyberknife radiation was performed. Started having pain swallowing PET scan showed some activity at the junction/seam between stomach and throat. Referred to ENT to rule out throat lesion (none found). Having CT scan with thoracic surgeon next Monday 6/8. Started having right arm/leg numbness and saw PCP who scheduled head MRI (scheduled for this morning).

    We also have two adult children on the autism spectrum living with us, so I’m caregiver to everyone. Very difficult and exhausting 24/7. Not real hopeful about Tom’s future. He has struggled to regain weight (lost 60 pounds since esophagectomy), doesn’t eat well, short term memory loss and confusion always present.

    I feel like his time is up and am trying to stay strong for everyone’s sake but it’s so hard.

    • #23509 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Thanks for sharing with us, Cristina. That was brave of you. You, too, are allowed space to go through your tough periods, since like you said, you’re usually staying strong for everyone.

      What kind of support system do you have in terms of other family and/or friends? Are there ways you can get an extra hand for an hour here, or an hour there, in order to take at least a little time for yourself?

      If you’ve tried these options and it’s more difficult to find help, you can definitely get some of that support here. So I’m glad you introduced yourself.

      Check out our forums and support chats when you have a chance. You can connect with other people who’ve felt a lot of similar feelings.
      Liz

  • #23546 Reply

    ElaineS55
    Participant

    This is my first post here,I have a million and one things to say and no idea where to start.I am a 59 almost 60 year old female.Married 27 years to the greatest man alive.Grown kids and grandkids all doing well.24/7 full time and solo caregiver for the MWH=Most Wonderful Hubby (everyone who knows me knows that is what I call him) I can see I am not alone after finding this site a few weeks ago and reading all the post/emails from other caregivers.I am seeing things in post that mirror my feelings as if I had posted them.I was a super out going, full of life and love kind of lady until the MWH took ill in 2009 and I became his solo, full time caregiver. I am now a ,umm A, what am I now? I was a mom,wife,friend a happy go lucky lady who loved life and everything in it. Untill! Now if and when someone calls or sends a msg or a email it is always the same. How is MWH doing? What did the doctors say? How is HE feeling today? No more invites to family events, no more friendly chat about what is going on with anything else.I am sure some of you see where I am going with this. I have renamed myself a few times, the ” FORGOTTEN ” is the name of the week. I say it is not a pity party but when I reread something I write I see that is what it is. Everyone who knows me/us knows the MWH is my everything, my world,my life , my breath, my heart. It was that way before he became ill too.I had heard the word burnout used in many ways but never thought I would have it. BUT, I think that is what is going on with me now and I need help to fix it.I will make another post on the MWH’s illness/’s later on but again it is all about him.I can’t even write about ME without putting him first.So hang in there with ME and lets see if I can fix ME.

    • #23560 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Elaine –

      You are NOT throwing yourself a pity party and I totally understand what you’re going through. When my late husband was diagnosed with Stage 4 lung cancer in 2005, we weren’t even married. We’d been together for 26 years without “benefit of license.” He was a fabulous man, but a difficult man. It was hard throughout our relationship for me to separate me from him. He almost insisted that I always put himself before me. But…

      I have a strong identity and so do you. You sound like a very youmg 59/60 year old. Your energy and language speak volumes about you. You may not hear it, but you haven’t lost your “self.” You know what and who you are,it only seems like the entire world is all about him. There is no way someone with your devotion and love would let things be other than they are…as far as caring for your MWH goes. My life was all about Steve (my husband) and his illness after his diagnosis because I couldn’t have it any other way. But we are all capable of experiencing burnout.

      There are lots of little things you can do for yourself. Being on this site is a wonderful step towards balance. I couldn’t leave the house. Not only was I caring for Steve, but three years after his diagnosis, his mother was diagnosed with lymphoma at 89. She moved in with us. Whatever little time I had left to myself vanished. I had to find some way to “escape” and the internet provided me with that rabbit hole. I found a support group online. I found someone online to become pen pals with. I journaled. I’m an artist and not being able to get to my studio to work was agonizing. I dreamt of creating a place for people like us…this is it.

      We live in a world where people are afraid of sickness. It’s one thing for someone to have an operation with the knowledge that recovery is imminent, it’s another to watch your loved ones grow more and more ill. Some people find it easier to hide from life than others. And what you’re going through is part of life. You’ve chosen to live it as a devoted wife, mother and grandmother. You have many blessings and it sounds like you know it.

      I have no idea if you have the means to find someone to cover for you while you regroup mentally and physically. Needing a break doesn’t mean you don’t care. Steve couldn’t have let me leave for a week, or even a few days, and in all honesty, I don’t know how I would have dealt with being away from him.

      Now that you’ve found us, let me know something about your MWH’s condition. Your post was a success. It was all about YOU.

      So HOW ARE YOU? You’ve certainly taken a step towards finding some relief.

      Many hugs, Adrienne

  • #23547 Reply
    Profile photo of Liz Imler
    Liz Imler
    Member

    You’ve come to the right place, Elaine. I’m glad you found some posts by other members that spoke to you. We definitely have a lot about “taking care of me” on this site, since we’re dedicated to those that take care of others.

    Here are a few articles to get you started:

    Also, don’t forget – the forums are a great place to connect with other caregivers going through the same thing 🙂

  • #23719 Reply

    sallypup
    Participant

    Hi, i’m Cathy, I’ve been taking care of my son since he was in a drowning accident back in 1982. He has severe brain damage from lack of oxygen .He is now 38,luckily not a big guy,but since we are getting older a little bit harder to manage. He needs total care,he’s none verbal, doesnt walk,needs to be fed.It was manageable up till my husbands eyes hemorrhaged ,due to a family disease and my sons hip is starting to deteriorate.Feeling a bit overwhelmed these days.

  • #23721 Reply
    Profile photo of Liz Imler
    Liz Imler
    Member

    Thanks for joining us and introducing yourself, Cathy. There are definitely members here that take care of loved ones with TBI and the like. As a caregiver for as long as you’ve been, feeling burned out is totally normal and you’re not alone.

    Please take advantage of our forums and chats, you’re bound to find some great support from peers here.

  • #23891 Reply

    Sue K Green
    Member

    Hi, I’m Sue. My husband suffered a severe stroke in November, 2012 which affected his left side and left him with Aphasia. I am happy to say that he had made a remarkable recovery; can carry on good conversations (still losing some words but searches for others to take their place) and walking with the aid of a cane. (Distance limited – no curbs or steps w/o railings) I am his primary caregiver.

    We are both retired. I often feel ‘boxed in’ and ‘limited’ in my activities. I have found that writing poetry takes me to a better place and releases some of the stress within. Sharing my writing reaches out to others. It helps to know I am not alone.

    I have self-published the following books, now available on Amazon.com.

    “From My Heart in Pictures and Poetry” – A personal journey into caregiving
    “Love Is Climbing the Rainbow” – An anthology of love poems
    “Storms of Stroke and Stroke of Pen” – An attempt to increase awareness to “Stroke” and “Caregiving”

    • #23904 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Hi, Sue! Thanks so much for joining us and sharing your story. We have a section on our site where you can share your story and anything else — like poetry. Since you’re a writer, I thought you might be interested in this feature:

      http://thecaregiverspace.orgpost-submission/

      Looking forward to seeing you online. And, again, welcome!

      Liz

  • #23922 Reply

    Robert Kershaw

    My name is Bob. I am 66. I have been a caregiver most of my life. When I was 19 I founded a camp called Camp Happiness for kids with disabilities that was run and funded by Teenagers. I went to Brazil and founded several programs for rural youth to experience the city and city kids to learn what rural life was like. I worked at a camp for kids with cancer, helped found a camp in NY for families affected by HIV and have sort of adopted as my son one of the kids I had at the camp. He is now 32. I worked with homeless teens in NYC with a program I created where most were HIV Pos and on drugs of some sort and many were sex slaves at one point. They had to learn as much about drugs, AIDS and homelessness so they could go into the schools and talk to the kids as peer educators. All have passed away but the program was a success. I took care of my best friend till he died of HIV/AIDS in 1992. I took care of a deer partner minister who had Diabetes and lost both legs while working as a full time Para Educator and a full time PCA for a boy with CP. Burt, the minister died three years ago and Nate the boy with CP just moved to South Carolina with his money. I worked with him for 18 years. I now am working on restoring a 16 room Victorian house to be used as a respite house for TBI and the top floor for the Red Cross for victims who have lost their homes to fire. If you go onto the GoFundMe sight and type in to the search box “TBI Respite House” You can see the info. This is my last challenge and I hope I make it. I have a lot of help from former students and friends so it gets easier. I am also writing a book called “If I Die Before I Wake, A Caregivers Journey” Hopefully that will help. So this is some of who I am and there is a lot more. I can not say that caregiving gets any easier with knowledge as each experience is different. I can say that we all need the support and encouragement to not feel alone like this space has offered. The person who started this page is a genius and I commend them for it. Thank you for this opportunity to share and I hope to hear from you.

    • #23942 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Robert –

      My goodness, but you have had an incredible, caring life. You managed to share a great deal about yourself in your post and it certainly sounds like your book will have some great content.

      Thanks too for the compliment—I’m not a genius, I just saw a need and I have a big heart. I wonder if you would like to write for the website? Our blog has some amazing content and pieces don’t have to be very long; just pertinent.

      Please let me know if you’d be up for that. In the meantime, hope to see you sharing on the forums again soon.

      Hugs – Adrienne

  • #24323 Reply
    Profile photo of
    Anonymous

    Hi, my name is Denise and I’m 61 y.o. My husband is 59 y.o. and his neuro-psych evaluation indicated Major Frontotemporal Neurocognitive Disorder. This has been followed-up by CT Scan, which indicates mild cortical atrophy. His MRI results aren’t in yet. He’s appears to be very forgetful, but when he fixates on something, he pushes till he gets what he wants. I’m new to this learning curve and I try to redirect, speak in a pleasant voice, but I get nowhere and become very angry and frustrated. He’s with me me 24/7 and when I do get a chance to go out, he’s with me. If I leave him alone, I’m always wondering what’s going on at home, or I get several phone calls…when are you coming home, how long will you be, etc., and I can’t really relax and enjoy myself. If he’s with me, he’s with me, he walks off, starts conversations with people, becomes impatient to go back home, etc.

    What I’m having a problem with is his routine when he goes to bed. He will search every closet, cabinet, under the beds and even the laundry room looking for a certain cat to sleep with. This cat is very independent, does not like to be picked up or held. He will pin her in a corner (or wherever he finds her), pick her up and carry her to his room, close and lock the door so she can’t get out. The cat is crying and carrying on and then the dog comes and hides under my desk. I have asked him to not do this in the nicest way, to no avail. The cats and dog are 12-14 years old.

    I’m at my wits end – this happens every night, same routine over and over. What can I do save the cat and dog from being “tormented.” The cat’s are too old to re-home and I don’t want to split them up. The dog is mine, but she will go to him when he has food, but she is also stubborn and will not give an inch if she doesn’t want to. Tonight with all the rain and thunder, she was hiding in the tub and he went and “pulled her out of the tub and dragged her down the stairs so she could “eat a piece of cheese with him,” even though it was very clear she didn’t want to.

    Anyone have a problem like this? Any suggestions or solutions?? Thanks for the opportunity to share and I hope to hear from you.

  • #24327 Reply
    Profile photo of nhawkins2
    Narelle

    Hi – my name is Narelle – I care for my 34year old son who suffered a severe Traumatic Brain Injury in 2010. Our life has changed dramatically since his motorbike accident – I know it will never be the same – but some days are harder than others. He has almost no short term memory – severe cognitive damage – suffers very severe depression and a myriad of other medical issues as a result of his TBI. He spent 3 months in Intensive Care – had 5 hours of surgery to repair the damage to his face (the full impact was his face/head) he spent a further 5 months in the Brain Injury Unit. We are currently fighting to save his eye which was partially closed (surgically) as he has damaged the optic nerve and also has no feeling in the right side of his face – it has become ulcerated again. Caregiving is such a hard road – I know this will be forever – but I feel so blessed to still have him.

    • #24333 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Thanks for introducing yourself, Denise. I’m sorry to hear your pets are being tormented! It’s clear your husband just doesn’t understand their discontent (or yours for that matter). Is there a friend or family member that can temporarily take the animals? Or is there some kind of stuffed animal you could distract your husband with? It seems perhaps he’s looking for some form of comfort, though I’m not a medical professional, so I’m not completely sure.

      Try your question on another section of our forums, too, you might have luck in our Alz/Dementia forum and meet peers who have been through similar experiences dealing with cognitive disorders.

    • #24334 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Narelle — thanks for joining us. Your ability to stay positive in the face of such a traumatic event is something to admire!

      You’ll find a lot of resources and support here, so I’m glad you found us. Caregiving burnout and experiencing frustration is normal, but we’re here to acknowledge that and help you through it.

  • #24444 Reply

    TJ

    Hi. I’m TJ…I’m taking care of my mom who has dementia. I’m exhsusted,angry and would rather kill myself than go one more day. I’m too tired to go into the story. ..it’s no different than yours I’m sure. I read a caregiver article in neurology now and wanted to scream…some lady was talking about how her mother kicked screamed cussed and bit when she showered her and she laughed and said someday this will be a loving memory. I call bs. I’m desperately seeking a place to vent and talk. Openly and honestly. I have zero time for a support group. Thank you for lostening.

    • #24458 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      I SAY VENT AWAY.
      That’s what this space is for. If you go to the emotions forum, you’ll find comfort there. You don’t need permission to vent here. Go for it.
      Adrienne

    • #26961 Reply
      Profile photo of mimi
      mimi
      Participant

      Hi TJ you can friend me I have a mom with dementia too and don’t mind to talk.

  • #24457 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg
    Participant

    Thought this might be of interest to members – SPEAK UP, speak out!

    Seeking Volunteers to Test a Survey for a Caregiving Study

    Abt Associates Inc. and the Federal Office of the Assistant Secretary of Planning and Evaluation (ASPE) are developing a survey for family caregivers of children and adults with disabilities, to learn more about their experiences. If you are providing unpaid assistance to a person under 65 with a disability or chronic condition of any type, we would like your assistance in testing the survey questions. This would include a 60 to 90 minute interview at a location of your choice; participants will be compensated $100 for their time. The purpose of the interview is to make sure the survey questions are easy to understand. If you are interested or if you know someone else who is, please contact Tiffany at Abt Associates Inc. at 301-628-5518.

  • #24583 Reply

    Carolee

    Hi! I am Carolee and am a paid caregiver for a 31 year old son. He has a rare form of Mitochondrial Myopathy. Muscles, brain, vision, and hearing are all affected. Dementia is part of this fatal and progressive disease. He was diagnosed in 2010, but seizures started in 2008.

    • #24587 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Hi, Carolee! Thanks for joining us and sharing your background. Here’s a link to our forums in case you feel like connecting with other caregivers. We have a section for chronic conditions and Alz/Dementia. You’re free to discuss whatever you need to on our forums. They’re a safe place!

      http://thecaregiverspace.orgcommunity/forums/

      Also, getting paid to be a family caregiver is actually one of our most popular blog pieces on The Caregiver Space. It’s a hot topic for many caregivers that want to stay at home full-time to give their loved one the care they need. Here’s a link to that. I’m sure the community would love to hear more ideas on how to become a paid caregiver for family so they can leave their current jobs.

      http://thecaregiverspace.orgpaid-to-be-a-family-caregiver/

  • #24705 Reply
    Profile photo of Tammy (TNT)
    Tammy (TNT)
    Participant

    My name is Tammy. I am 47 years old and am a care giver to my partner who has advanced Multiple Sclerosis and is 56 years old. I just wrote about an 8 paragraph intro only to accidentally wipe it out. I don’t have time to re-write (as you know the life of a FT care-giver is busy). I am stressed, sad, depressed, lonely and angry… you name it! My new therapist of 4 weeks suggested journaling. I think this is a form of journaling and I wanted to give it a shot. I have enjoyed reading others stories. I know I am not alonw but sometimes I feel that way. I look forward to sharing and reading more.

    Thanks,

    Tammy

    • #24716 Reply

      Sue k Green

      I can only say, “Keep writing, it helps!” I use poetry as my medium. I’m sure all caregivers can relate to much of what I write. I have also published two books on Stroke and Caregiving, now available on Amazon. “From My Heart in Pictures and Poetry” and “Storms of Stroke and Stroke of Pen.”

      Communicating with other caregivers easing the feelings of “isolation” and feelings of “guilt” for for you natural outbreak of feelings.

      • #24739 Reply
        Profile photo of Tammy (TNT)
        Tammy (TNT)
        Participant

        Well I’m glad writing here counts as journaling.! 🙂 When I thought about journaling I thought about just opening a word document and writing out my feelings but that seemed so boring. I am very social and it feels so much better to get some feedback from others who know how I feel!

        After 12 years of being a rock solid caregiver this rock has started to crumble. I have tried to be strong and to be the “perfect” caregiver. But the more advanced my partner’s Mulitple Sclerosis became the harder it is to stuff and hide my feelings. About a month ago I hit rock bottom. The pain and grief became so overwhelming.

        I called my mom one Sunday morning and was just hysterical. I cried and cried and shared some of my feelings. I was surprised at how angry I was that she was sick. I was so mad that she had to have this terrible disease. I was so mad that she had lost so much and that it was just one thing after another.

        I realize that underneath it all I am really sad. I am sad that she hurts, and struggles. Sitting by and watching the person I love so much become incapacitated and depressed breaks my heart.I am also scared. Scared for what the future holds for us. Scared that she is on a very sliperry down slope.Scared that I will lose her completely.

        One doctor and her therapist said to me we should “make plans “. When I think about her not being with me by my side the pain becomes so intense I can barely stand it. No one is ready at this point to call in hospice but I think they feel the need to prepare me. Nothing has been said to her directly. I wouldn’t want her to give up the fight.But I never really thought so much about dying until they started bringing it up to me. I planned on having her in my life till a ripe old age. And I may. For now she is in good health minus the MS. She is stable and we are working daily to keep it that way. She takes almost 20 prescriptions medicayions and has 11 doctors. But not sharing what the doctor & therapist said with her directly feels like I am hiding something from her. But I see no benefit in telling her what they said. It would just scare her and make the depression worse. My biggest fear as I said is that she would give up. At which time they feel she is ready for hospice care we will all have to talk. I really hope they are wrong and that she has many years left, but then again that feels “selfish” on my part. I want her to be with me no matter what and I know thats not really fair. She has suffered so much and at times is so tired.

        Well the tears are flowing and its the middle of the night. I really should get some rest.

        Thanks to Sue & Adrienne. I will check out your books and videos!

        Tammy

        • #25266 Reply
          Profile photo of Nancy
          Nancy
          Participant

          Tammy –

          I’m so sorry you’re struggling with this! In 2003, my then-fiance died, and yes, it’s a terrifying, long, horrible road. I’m sending you vibes and good thoughts that they doctor and therapist are both being overly dramatic.

    • #24721 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Yes Tammy, writing on the forums regularly would clearly qualify as journaling.

      It’s a great stress reliever. Going through a very intense caregiving experience myself showed me just how valuable writing every day, even if it was only a sentence or two, let some pressure out of the pressure cooker.

      I’ve done a few videos (short in length) called “The Page Listens” to encourage people to write. Going back now, four years since my husband died, and reading all that I was going through day by day is quite remarkable.

      I encourage you to keep it up. It will help. Kudos to your therapist for suggesting it.

      Some people like to write first thing in the a.m. to get their feelings off their chest for the day ahead. I chose to write at night about the challenges I met each day. I slept better!

      You can reach me any time at adrienne@thecaregiverspace.org. So glad you found us.

      Hugs – Adrienne

  • #24743 Reply

    Sue k Green

    Was cleaning my closet and came upon this plaque I must have purchased years ago. Today, it really hits home!

    A Few Words of Caring

    After a while you learn
    that love doesn’t mean leaning,
    that kisses aren’t contracts, and presents aren’t promises…
    And you begin to accept defeats
    with your head up and your eyes open,
    With the grace of a woman, not the grief of a child.
    So you plant your own garden
    and decorate your own soul,
    Instead of waiting for someone to bring you flowers,
    And you learn that yu can endure…
    that you really are strong
    and you really do have worth,
    and that with every new tomorrow
    comes the dawn.

    Verse © Hallmark Cards, Inc.

  • #24816 Reply
    Profile photo of mollepearl
    mollepearl
    Participant

    Hello everyone!

    My name is Molly and I’m a caregiver for my husband. He is a veteran diagnosed with PTSD/depression/anxiety. A little over a year ago he was also diagnosed with leukemia. The two make for a really fun combination at times. (sarcasm) 🙂

    I used to go to a support group for caregivers of cancer patients. However, now that my husband is almost a year post-transplant and his cancer is in remission it felt awkward to continue going to the group. Since then I’ve been searching for support groups for caregivers of veterans and have had no luck. I’ve reached out to dozens of agencies only to be told that those services “just don’t exist.” It is rather dehumanizing and just plain crazy in a city as large as New York to be told something doesn’t exist.

    I don’t know why it took me so long to find this website, but I love how inclusive it is. I’m particularly interested in talking with people about long term caregiving and how that effects their relationships, especially with a spouse. I’m also interested in hearing from other people about fertility after cancer.

  • #25190 Reply
    Profile photo of Elizabeth
    Elizabeth
    Participant

    Hi, everyone.

    My name is Elizabeth, and I’m my mother’s caregiver. I’ve been taking care of her to some extent since I was 15 and now at the age of 25, I take care of her full-time. She has severe osteoarthritis, ulcerative colitis, lymphedema, and diabetes.

    It’s been a very difficult journey so far, as it’s just the two of us. I haven’t been able to find any caregiver support groups in my area and can’t afford to see anyone for my own issues, which include MDD and GAD, among other things. I really hope this forum can provide some relief.

    • #25288 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Hi Elizabeth — I hope our forums can provide some relief as well. Our support groups are on a summer break, but we’ll be providing those again in the fall. I’m glad you’ve joined us.

    • #25289 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Hey Molly — I’m glad you found us. The veteran caregiver component of our community is actually a large part of why I joined The Caregiver Space as well 🙂 My brother suffers from PTSD and bipolar disorder after serving in Afghanistan. I’m glad to hear your husband’s cancer is in remission. There’s definitely plenty of room to talk about all the topics you shared, so I hope you get a chance to raise questions/comments/concerns on our forums.

  • #25249 Reply

    Carolee Parsons

    My name is Carolee, and I am 60 taking care of à 31 year old son. He has Mitochondrial Encephalitis Lactic acidosis with stroke-like syndrome. It is fatal and progressive. It affects his muscles, his vision, his eyesight, and brain cells. Seizures started at age 23, but he was diagnosed at age 25.

    I was sick today, and was worried that I might infect him. No help today.

    • #25259 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Carolee –

      I’m so glad you’ve found us. It sounds like you’re a loving and devoted mother and I think you’ll find other caregiving moms on the forums. Whether or not anyone shares your son’s exact condition and your situation, you’ll surely be able to connect with people who share your dedication and devotion.

      I hope YOU are feeling better and please, continue to take care of yourself.

      Hugs – Adrienne

  • #25251 Reply
    Profile photo of Nancy
    Nancy
    Participant

    Hi all.

    I’m Nancy. My husband and I moved from a medium-sized city to a very rural very small town in Florida (near the Gulf coast) because my father was too sick to take care of his wife on his own. That was in February 2013.

    Because we don’t have and won’t have children (we’re in our 50s), it made the most sense for us to move. My sisters do not have a good relationship with dad (lots of resentment for his alcoholism as we were growing up), so there was no way they would have moved even if their jobs (and their husbands’) would have been possible for a transfer.

    I love my dad, and I would do anything for him. He is 85, has CHF and COPD. I’ve never liked her, and now it’s worse. She is in her early 70s, and had colo-rectal cancer. She spends money they don’t have, so we’ve gone through our savings so buying his medicine. She does not in any way shape or form follow the doctor’s suggestions for her diet, and so has constant diarrhea. Sometimes it’s bloody. Can you imagine how wonderful it was when she showed it to me? She has been retested and there are no signs of anything wrong, but yet it’s constant and we hear all the details. We also buy about half of her Depends and “Posies” (because she can’t seem to get it through her head that they’re called “POISE” pads).

    She’s a recovering alcoholic (as is Dad) (which, by the way, she doesn’t tell her doctor), and she’s now addicted to her hydrocodone, which has been prescribed because of her knee, which she twisted when she fell while in rehab. For some reason, she blames one of her surgeons for that. Anyway – when she runs out of hers, she takes my dad’s. Dad’s VA benefits are very minimal because he was 4-and-out. He is in pain at times because she has taken all of his hydrocodone.

    And now she’s found a new way to manipulate it so we all know that everything is all about her all the time. This week I took her to an appointment that ran two hours and then shopping afterward.

    Today she asked me to run an errand. Instead of having a list and telling me everything they needed, I had to make four trips back and forth to the store, even though I asked, “Do you need anything else?” every time.

    Then when I got everything done, she said “So because you have to take Dad to the doctor tomorrow and both of us to the doctor on Friday, I made our appointment with the vet for the dog on Saturday.”

    I sound like an awful person, but I’m not working because of them, we have things around the house that have to be fixed, and I’m never home (which is why I can’t work). When I am there, she yells at me. When I’m not there, she yells at Dad.

    I’m sorry to go on and on like this, but I’ve tried to talk to my friends, and they just reply, “sorry to hear that. You should go on a vacation!”

    • #25252 Reply
      Profile photo of Nancy
      Nancy
      Participant

      I forgot to mention that she has two sons. One lives in Chicago, the other in Singapore. They are less than no help.

    • #30612 Reply

      Stephanie S
      Participant

      Going on a vacation doesn’t help. I tried that this last May, but just the preparation for the vacation was enough added stress. I have to admit that I do not take care of my mother in person, as I was able to get the state of Arizona to take over paying and proving her care. As she has dementia, I make all decisions as her healthcare POA. I can get multiple calls during the day, while balancing work and graduate school. Yesterday I just ran away. I got in my car and drove to the beach, and just watched the ocean. I was gone for three hours, and no one knew I was gone. I didn’t answer one call regarding her care, and decided to return the call later. It was a moment for me and my own thoughts. I am sure that not everyone has this luxury to get away, and find a moment. But if you can, it doesn’t have to be as difficult as a vacation. Boundaries is a second thing you will need to discover. Slowly define what boundaries would look like for you in your life, and try pushing them into place in very small steps. You have to find a way to protect your own sanity while still helping out. They do need you, but they don’t need to abuse you. And remember that your father choose to marry this woman, and anything you do is out of your love for him, and not for her.

  • #25260 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg
    Participant

    NANCY –

    You by no means sound like a terrible person. Quite the contrary. You’re human and have limits like everyone else.

    There are some alcoholics in recovery who are “dry drunks” and persist in having manipulative and destructive habits. It seems to me that the only way around this behavior is to finally say NO to some of her requests.

    Learning to deal with alcoholics, whether they are actively drinking or not, takes a bit of doing and as uncomfortable as it may be at first, you need to set your limits and make your boundaries clear. One thing I’ve learned is not to make idle threats—so if you say no and she continues to prod you into action, don’t give in. She will have to learn that no means no. You’ll get used to it.

    Please continue to visit our forums and feel free to begin your own discussion. I think that there are many other caregivers out there who are dealing with loved ones with alcoholism or who are in recovery, and this situation complicates the already taxing tasks involved in caregiving.

    Hugs-Adrienne

    • #25267 Reply
      Profile photo of Nancy
      Nancy
      Participant

      Thanks, Adrienne. When my dad went into rehab for his alcoholism, we learned a lot. I’m pretty certain that while she is a dry drunk, there are other things at play. After all, if your son travels from Chicago to St. Pete to spend two weeks with his Dad, wouldn’t you think he would take at least part of a day to drive a couple of hours to see his mom? He doesn’t.

      Based on what I’ve learned she was abused and I have seen/experienced her emotional abuse to my dad and to me. My husband and I take it and run her errands for one reason only: If we don’t, my dad suffers.

      I have told her sons that when Dad dies, they will have to find some place for her within a week. Dad’s pension pay 75% of the expenses, so she won’t be able to afford the house, and frankly, she’s sliding into dementia, so shouldn’t live alone.

      I guess that’s why I feel bad for complaining. I have a light at the end of the tunnel, and many don’t – or see upcoming changes, and don’t want them to happen.

  • #25265 Reply

    Carolee_Bennett
    Participant

    Hi, my name is Carolee, I’m primary caregiver to my life partner Jim,who has Parkinsons and Lewy Body Disorder, with Dementia. He’s 69 yrs. old, I’m 64. This site was just recommended to me by Jim’s OT. I’m so glad she told me about it! I also see there’s another Carolee on here. Jim and I have known each other for almost 40 years,we’ve been together for 6 years. This can be such a rough journey. It’s not how we intended to spend the rest of our lives together, but the important thing is that we ARE together. I look forward to using this site often. I’m glad you’re here.

    • #25286 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Carolee – Thanks for the kind words. We’re happy to hear those who need The Caregiver Space are finding it from the right people and in the right places. We’re glad you’ve joined us and can’t wait to see you online! We’re here for you and Jim. Our community is very supportive!

  • #25273 Reply

    Jody_Hamelynck
    Participant

    Hi My name is Jody. I am a full time care giver to our special needs son and have been for 20 years now my husband who has stage 4 Pancreatic cancer. Since learning news in March about my husband of 26 years. I have developed body tremors bad enough my dr is worried about seizures. My blood pressure went as high as 195 boy do dr’s flip out about that. I had dr’s and nurses every place. I have lost over 30 pounds which puts my weight at 95 fully dressed with shoes on. My husband was on the 5 drug chemo but his body can’t handle it so switching him to lesser chemo this week. 15 days ago the removed 4 liters of fluid from him, which took 3 mths to build up yesterday they took 5 liters only 15 days since last tap. So hard watching your soulmate, love of your life slip away a little everyday. Wishing and praying a miracle happens but knowing in reality it isn’t going to and I will watch him pass away. Heartbroken and just feeling over whelmed. Thank you allowing to vent a little. Hope to make a few new friends and gain a little support I am doing this all alone. No outside help for either son or husband

    • #25287 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Hi Jody – I’m so sorry to hear about the burnout you’re experiencing. Your situation sounds extremely challenging and I can’t imagine how stressful that must be. You’ve come to the right place for support. We have both a special needs and cancer section on our forums. I hope connecting with our community can be at least a little of the outside help you need.

  • #25284 Reply
    Profile photo of lee
    lee

    Hi, I’m Lee.
    My Mom was diagnosed with alzheimers disease today.
    I’ve been living with her for about 5 years, after my husband died and I lost my home and basically withdrew from all friends, other family members and all life, I guess you could say. I have a job and a beloved cat, but I am a failure at just about every other aspect of life. My Mom is everything to me. I am so grateful for her.
    Now I have to care for her. I don’t know what to do about my social ineptitude. I can’t even talk to my siblings to ask for help or even to notify them of her diagnosis today.
    Your words are so meaningful to me. I feel somehow less alone. Thank-you all for writing.
    I wish you all the best.

  • #25290 Reply
    Profile photo of Liz Imler
    Liz Imler
    Member

    Lee — Don’t be too hard on yourself. Not everyone is an extrovert and/or social butterfly. It’s harder for some people, but that doesn’t make you socially inept. Consider the fact that you’ve been going through a lot lately. The time will come when you’ll need to notify your siblings, and I’m sure you can do it! Either way, we’re here to help with that conversation or anything else. Share with us on our forums and we’ll respond with any guidance and support we can offer. I’m glad you’ve joined us.

  • #25294 Reply

    Jody_Hamelynck
    Participant

    Hi Liz, This sure has been a roller coaster ride. Gene’s dr called right after CT scan and said he would no longer do the chemo that was recommended by other dr which was 7 hours at hosp every 2 weeks followed by chemo pack for 46 hours at home but switching to the lesser treatment. Followed that news with he needs to have extra fluid removed again 3 weeks ago yesterday the took 4 bottles this past Thur they took 5 bottles. Good thing is my dr. upped my med’s for the tremors pretty bad when not one of the drugstores in town carried it had to wait 24 hours for them to get it, now I need to give them a 3 day notice it needs refilling. Hope you are having a nice weekend

  • #25297 Reply

    ElaineS55
    Participant

    Question of the day. What about me? Everyone who calls,comes around or I run into ask the same question. How is your husband doing? I do not need to be first but it would be nice not to be last if even that.I dearly love the fact so many love and think about my most wonderful hubby but it pains me deeply that they do not seem to care about ME.The one who is there 24/7 who tends to his every need or want.He is the only one who ever ask ME how I am, of how I am feeling and tells me he loves me for being with him. I guess one out of 1000000 is good.He sees and hears how I get blamed if this or that is not done or how some ask me to do this or that with what little time I have after doing what I NEED to do.Days,weeks and months of little to no sleep,days without eating or even being able to go sit in the bathroom for 5 minutes without being needed else where. But I still answer with a smile at 2am when ask if I would sit with him because he can’t sleep even if I had just closed my eyes.Some say , well you can sleep when he sleeps! lol thats a good one.Due to his health issues I sleep with one ear open,I doze but I do not sleep.I can not rest and sleep when he is because there is so many things I have to do.This may sound like a pity party but it is not. I just want ONE other person to think about ME first, just one time

  • #25311 Reply

    paula

    I was wondering if other felted like this to,
    What about me,I get so caught up in taking care of my husbands that ill.Even tho i love him with all my heart,Then there is other issues going on,Someone always wants something from me,I feel guilty for feeling this way,After the hospital stay when he was put on a vent.For four days in May,He has what he says feels like holes in his brain,Can’t remember things we talk about are what he had to eat the day before,But has long term memory’s,anyone know anything about this.
    I feel like im being pulled apart,

  • #25312 Reply

    ElaineS55
    Participant

    ElaineS55 posted an update 17 hours, 13 minutes ago

    Question of the day. What about me? Everyone who calls,comes around or I run into ask the same question. How is your husband doing? I do not need to be first but it would be nice not to be last if even that.I dearly love the fact so many love and think about my most wonderful hubby but it pains me deeply that they do not seem to care about ME.The one who is there 24/7 who tends to his every need or want.He is the only one who ever ask ME how I am, of how I am feeling and tells me he loves me for being with him. I guess one out of 1000000 is good.He sees and hears how I get blamed if this or that is not done or how some ask me to do this or that with what little time I have after doing what I NEED to do.Days,weeks and months of little to no sleep,days without eating or even being able to go sit in the bathroom for 5 minutes without being needed else where. But I still answer with a smile at 2am when ask if I would sit with him because he can’t sleep even if I had just closed my eyes.Some say , well you can sleep when he sleeps! lol thats a good one.Due to his health issues I sleep with one ear open,I doze but I do not sleep.I can not rest and sleep when he is because there is so many things I have to do.This may sound like a pity party but it is not. I just want ONE other person to think about ME first, just one time.

  • #25313 Reply

    Sue k Green

    It is YOU who have to look after you and you deserve a break. Reach out to family, neighbors, friends, local organizations. Be specific in your requests. ( bring in dinner – sit with my husband while I catch a snooze, etc.) They don’t really want to hear about your busy day and lack of sleep and believe you have it under control. But would gladly respond to a genuine request for help. Sounds like you can really use a break.

    You can’t be of any help to your husband if you break down! Rule #1 in Caregiving.

  • #25407 Reply

    Tommytucker
    Participant

    Good Morning, I am Pattie. I had my Mom move in with me in March. She is 87 and has dementia.
    My sister has MS so it was not a option for her to take Mom and my younger brother Tom lived over a hour away and worked full time so I took the honor of having Mom here with me. On May 30th I received a call from my nephew that my brother Tom had passed away. He was 54 and had had A-Fib and had high colesterol that he was trying to get under control since my older brother Bob died at 34 from it in 1991. We also lost my Dad of the same disease at 45 in 1977. I too have heart disease. So my life has been surrounded with family deaths pretty much all my life and now all I do is think about our next one, MOM..(or me) I didn’t think that taking care of Mom would be so difficult and more so now that I don’t have my brother to call when I need to talk. We talked on a daily basis.Mom misses his calls as well I believe. She has handled this pretty well and I think it is the dementia. This is the one time I can say the dementia is a god sent because I don’t think she could have handled another child dying. I have been so sad tired and angry lately that I have to do this all myself 24/7 and feeling sorry for myself and then feeling guilty for feeling sorry for myself. So many emotions happening. Well anyway I found your page and decided to join. Yesterday was my first day to pull up my big girl panties and be greatful that I still have my Mom and to make sure she is happy and she feels safe. I will do this for my brothers that are now gone, for my sister and myself, and most of all for my Mom. She deserves all the love that she can get right now, after all she did it all for us. Thank you for this site. I plan on learning a lot from it to help us with our journey. 🙂

    • #25412 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      I’m glad you found us, Pattie. Your positivity, despite all your struggles, really resonated in your introduction. I think our community members will appreciate your ability to stay strong, and you’ll help those on our site as well!

      Our forums are a great section to browse, vent, explore, and connect with other caregivers. And just a note: our support groups should be returning from summer break in the fall.

      Stay strong and positive. Thanks for sharing.
      Liz

      • #25554 Reply

        Tommytucker
        Participant

        Thank you Liz, looking forward to learning others coping mechanisms and what is in store for our journey with this horrible disease.

    • #25561 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Pattie –

      I wish we could bottle your attitude and sell it to all our members. You’ve really put things into the right perspective for yourself and although you have the common feeling of guilt that arises from anger at the situation, you’re really remarkable.

      I have to second what Liz wrote – use our forums, join in or start your own topic. Write and use it as a journal. A little writing and sharing goes a long way.

      Welcome, welcome, welcome. Adrienne

      • #25882 Reply

        Pattie Hunter

        Thank you so much Adrienne Gruberg for the kind words. It is always uplifting to hear a little praise when you struggle daily to be positive. 🙂 I will definitely look into the forums. TY

        Pattie

  • #25876 Reply
    Profile photo of Sharon
    Sharon Ward

    Hi,
    My name is Sharon, and I take care of myself & my husband David. We were involved in a motorcycle accident 7 years ago. A lady talking on her cell phone made an illegal U-turn and ran into us, causing me to lose my right leg above the knee and almost bleed to death. My husband has a traumatic brain injury. He was in 4 hospitals for 5 months. I was in 2 hospitals and received rehabilitation and then came home where my sister had flown down to help me. I went to see my husband every day a round trip of 70 miles, but I had to see him. He was on a ventilator and in a coma, but I needed to see him. I got a prosthetic leg and had therapy to learn to walk. All this time, my only thought was my husband. When he finally came home I was so happy. About a month after he came home, he came to the door of our bedroom (I had not got up yet), and he said “who are you?” I thought he was joking! But he wasn’t. He did not know me. I was shocked and devastated. I told him that I was Sharon and he got really angry and started saying terrible things to me. I cried and cried and I called my sister to talk to him and tell him who I was. She talked to him and when he hung up, he said he was sorry, and he cried. This went on really bad for a long time and I always had to call someone that could tell him who I was. We went to the memory care center in Tampa and the psychiatrist said that he had cap gras syndrome, which is when the patient had a head injury and sometimes this happens and they think the person closest to them is an imposter, usually it is the spouse. I could go on and on about the emotional devastation this has caused me. The weird part is that when we are out, he will tell people about me, point out my titanic leg, tell them how great I am,etc.
    We have periods where everything is going fine, and I get lulled into thinking everything is ok and he knows me. Then something triggers him, and gets mad and starts saying he hates my guts, he wished he had never gone to Staunton, Virginia, it was the worst mistake he ever made, and he wishes “all you women” would pack up and get out. This happened this weekend. I am so mentally and emotionally exhausted with this, and I am in a constant state of mourning. I read a book that called it ambiguous loss, where the person is still here, but gone to you. I love my husband so much and I would and do, do everything to take care of him. I also am trying to keep myself healthy and well so that I can always be here for him. I work out 3 times a week, and I go horseback riding every other Saturday at a therapy stable. I go to church, and I know people. But I feel isolated. I only have 1 sister and she is in Virginia. My good friends live 30 miles away. Sometimes I just want to give up, but I will not do that because of my love for my husband. Before the accident he treated me like a princess, and we did everything together. I know it is not his fault that he has memory problems, and it breaks my heart for him. I love him so deeply and I am thankful that I have him. I am glad that I found this site and thank you for listening.

    • #26046 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Thanks so much for sharing your story, Sharon. How heart wrenching. Your ability to keep up with your daily life and attend church, etc., is inspiring — not to mention the unconditional love you have for your husband.

      I’m glad you have your sister to call, even if she’s 30 miles away. I’m glad you’re reaching out for help by joining us here.

      Our forums are a great resource for peer-to-peer support. Please don’t hesitate to reach out there. In fact, if you read this whole introduction thread, there are a couple of members here caring for someone with a TBI. I found this thread as well, and although it’s in our Alz/Dementia section, a member who cares for someone with a TBI also commented on her husband’s outbursts:

      http://thecaregiverspace.orgforums/topic/outbursts/

      Stay strong, and welcome!

  • #25908 Reply
    Profile photo of Adrianne
    Adrianne
    Participant

    Good morning? Well, that might be a debatable adjective in my household this morning. I am Adrianne. I am the long-term caregiver of my son who was diagnosed with autism at three years of age, and was diagnosed with disorganized schizophrenia in 2012. He is now 22. I’ve been caregiving for 19 years and I’m tired, not coping with the schizophrenia well, and isolated. I’m so tired. I had a minor meltdown this morning which resulted in anger, frustration, and tears by 9 a.m. So, “no”, it was not a particularly “good” morning for us, but life goes on, and I guess this was a lesson. The hardest part for me right now is just letting go of the anger at the illness and accepting that I have to find healthy ways to cope, adapt, and live a joyful life. This is quite challenging to do in isolation.

    • #26029 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Hi Adrianne — if you’re feeling isolated, I’m glad you’re taking time to reach out to our community here. We have a section on our forums for those caring for someone with mental illness. It might help to post your story there or read through the other posts.

      Also, is an article posted by a member on schizophrenia:

      http://thecaregiverspace.orgschizophrenia-caregivers-support-group/

      Please keep visiting — I’m sure it can help you feel at least a little less isolated!

  • #25937 Reply
    Profile photo of
    Anonymous

    hi im brian and very tired, i look after my wife of 30 years, we have no children, a mixed bag of in-laws and less friends than we thought. my wife feels she isn;t dying fast enough to keep everyone interested. to be fair life does go on….but it’s a bit disheartening to see how long of an attention span people have for something like this, the original diagnosis was stage 4 cancer….but whoops they were wrong, (we still don’t know whats wrong, but at least we have all those “so your going to die soon” books helpfully sent out with alarming efficiency. I need to keep my head in this for 2 1/2 more years so i can retire, i have no idea what to do with this plan anymore…will I have a wife? I work at a safety sensitive job, and can no longer concentrate, my wife insists on helping around the house, which is just wearing her out not building stamina…..i have no idea anymore what to do

    • #26028 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Brian — coming here and talking to others is a step if you feel you’ve reached a plateau. Take a browse or post your own questions/concerns on our forums — you’ll definitely come across other community members who have experienced some of the same feelings.

      Stay strong! We’re here for you.

  • #25952 Reply

    Betty_OBrien
    Participant

    Good Morning,
    My name is Betty and I am the full-time caregiver for my 25 year old son, Kevin. He was diagnosed with a malignant brain tumor-medullablastoma on November 8, 2013. I have been by his side ever since. I see the feeds on FB because I liked the FB page. I find the articles to be helpful and relevant. I’m hoping to connect with other mom’s who are caregivers. No One Fights Alone!

    • #26027 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      I’m glad to hear you’ve found our resources helpful, Betty. You’ve come to the right place for support. Thanks for joining us!

  • #26036 Reply

    JoAnne

    Hello, I am JoAnne
    I care for my mother who is 83 with dementia, severe arthritis, normal pressure hydrocephalus, and other health related life limiting problems. I have had my state issued handicapped hang tags stolen twice from the inside of my car, I thought the car was locked and there was no sign of forced entry, nothing else was taken. The other one was taken from the inside of her assisted living apartment. Any suggestions? Would the state even believe me if I reported it stolen to them
    Thank you

    • #26077 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Hi JoAnne. Sorry to hear about your tags being stolen — that’s so frustrating. I’d try to go through the DMV to get reimbursed for your tags or get replacement tags. Based on your area, if it is a high risk area where things like handicapped tags get stolen a lot, I am sure something can be done.

      After all, it never hurts to ask…

  • #26040 Reply
    Profile photo of Ira Arnold
    Ira Arnold
    Participant

    Hi my name is Ira. I am the full-time caregiver for my husband of 47 years. He is a Vietnam Vet and suffers from many health issues related to Agent Orange, the latest, 2004, he was diagnosed with Multiple System Atrophy(MSA) which is a neurological condition, similar a more advanced form of Parkinson’s. The symptoms can be treated, but it can not be cured. The average life span for someone with this condition is 5-9 years. The Dr. who diagnosed him in 2004 stated that the onset was probably in 2001 when he started falling. So we are feeling blessed that he is still with us. Last week the Palliative Care Clinic at the VA referred him to Hospice for his continued care. That was quite emotional for me even though they have been trying to get him to agree for over a year. The reason is not because they think he will die in the next 6 months, but to better control his pain and keep him comfortable and give us added support with the other services they offer.

    • #26078 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      HI Ira — Thanks so much for sharing. I, too, lost a dear family friend to ALS related to Agent Orange exposure, so I’m familiar with the slow deterioration.

      As tough as it is to have your husband go to hospice, I am SO glad you are getting the support and help you need. Not only is he owed that for serving our country, but you are, too, for standing by him and taking the role of caregiver for ten years.

      Stay strong! We’re here for you.

  • #26047 Reply

    Colleen Burke

    Hi. My name is Colleen. My husband, Jim, is in the final stages of his 14 year fight with brain cancer. He is 42 years old. Today was a tough one. We are faced with the decision to continue or stop treatment. We have wonderful family and friends but I didn’t expect Jim to become sensitive to having them visit. We have a full line up of visitors revolving through our doors in the next three weeks. I need all of the support I can get.

    • #26076 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Colleen — our peer-to-peer community can be a solid place for support. I suggest popping onto our forums when — and if — you get the chance in the next coming weeks just to reach out to other members who have gone through a similar experience.

      Stay strong — though it sounds like you’ve been doing that for quite some time. We’ll keep you in our thoughts!!!

  • #26050 Reply

    Chris_Nielsen
    Participant

    Hi,my name is Chris and I’ve been reading here and on your Facebook page for over a year now and it has helped me immensely. I was caregiver for my wife for about two years and wish I had known about this site then. I have referred others to this site and thank you all for the wisdom, experience and helpful words contained herein. Here is the rest of my story.

    February 16, 2012 my wife suffered a seizure. I called 911, she was taken to the hospital where she was given tests to determine the cause. She had no other symptoms or previous seizures. After running scans the ER doctor came back and told us the words that changed our lives forever; “We found something on your brain.” It turned out to be a very aggressive malignant brain tumor. I became a caregiver that day without even realizing it or the implications for both of us.

    Over the next almost two years we went through a journey unlike any other we had ever been through. She had brain surgery to remove as much of the tumor as possible which then left her paralyzed on the left side. She had chemo and radiation treatments that helped keep the remaining tumor in check for a while. I was her caregiver 24/7. It was the most rewarding and most difficult experience of my life. I had to do everything for her. I wish I had known about The Caregiver Space then, it would have helped.

    We lost nearly everything we had, but those are only physical things, not life and love. We nearly became homeless with no income, no job, no health insurance, no government assistance other than MediCAL. I couldn’t leave her side and I’m glad that I never did. Thank God for family and friends who supported us. We were able to care for my wife and do everything we could for her.

    She passed away February 13, 2014 almost two years to the day she was diagnosed. Life expectancy for her type of tumor and with the treatments she received is typically one year. Faye was one tough beautiful woman and never really complained about her situation. She also never stopped praying. I still miss her every day and that is only tempered by the fact that she is no longer suffering.
    Even though I didn’t find out about The Caregiver Space until after she passed it still helped me by reading articles written by and about caregivers going through very similar life changing experiences. I have referred friends going through similar experiences now and I know that your site has helped them too. That is the reason I am taking the time to write this even though it is still a very tender subject. There is help for caregivers! No matter how difficult your situation is, there is help to be found in some way shape or form. Keep your faith and your wits about you.

    I always stayed positive for my wife. Even when I felt like I had nothing left inside, no answers, not knowing where our next meal was coming from, nothing but a little hope and a lot of prayers. That was so difficult, but all I could do. Then, something good would happen. A friend or family member would call and say they were thinking about us and did we need anything? I will never forget those moments or those who helped us. I’m thankful for all those who helped, her doctors, nurses and all those who helped in any way they could.

    If you are a caregiver and you feel all alone, don’t give up. There is help. Use The Caregiver Space as a great resource. Reach out to friends, family and loved ones. Someone really wants to help you. Say a prayer, keep the faith.

    Thanks,
    Chris

    • #26075 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Chris – thank you so much for taking the time to introduce yourself. I’m glad you can still visit us despite the fact that you lost your wife a year ago. We definitely believe in “once a caregiver, always a caregiver” here.

      Your story is so powerful, I want to thank you again for sharing it. Your positivity and strength is such a blessing a good example for our other members — including me!

      If you are every inspired to share more — I know its a tender subject still, like you said — please don’t hesitate to reach out to us.

      Be well.
      Liz

  • #26100 Reply
    Profile photo of Lausanne
    Lausanne
    Participant

    I just moved my parents a few doors down from us from out of state. They were living in a rural area with no support. My parents and I are very close. The challenge for me is going to be – how close? My mom has clinical depression. As her only daughter, I have become a major support for her. But I also struggle with trying to help her without overwhelming myself. Her moods take hard work and they bring me down with her.

    By nature, I am a positive person, not tending towards negativity or depression, but whenever my mother is suffering with her depression I feel desperate to help and often helpless to do so. (Just like the 3 year old I was when she walked past me and said she was going to kill hereself. Thankfully, it didn’t work. But I often feel just as helpless.)

    I’m sure my commitment to them is a good thing – when I can actually make a difference – except, I’m also sure I take too much emotional responsibility for her.

    Much more to say but I need to spend a few hours now recovering from 6 weeks of non-stop doctor’s appointments I’ve been running them to since I moved them.

    I desperately need to get back to work myself. The financial cost of 8 months off work getting them moved is something I do best to not even think about. I’ve lined up transportation for them. But I know it’s never going to be enough. Her depression is always going to see the dark side. I have to find a way to do all I can for them AND not destroy myself, my marriage, my own financial future.

    I’m glad I found you guys at least. I’ll gradually work my way through the other intros and figure out who’s who. I’m sure I have tons to learn from you guys. (Oh, wait, I’m betting we’re mostly girls here….)

    • #26217 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Thanks for joining us and sharing your story, @lausanne. As someone with a brother with mental illness, I can understand how difficult those low periods can really be.

      Our forums are a great place for support. I’m happy to hear you’re reaching out here already and taking some time to focus on you. You deserve a life, too, and all the positive vibes you’re sending into the world. It’s good to take breaks for our own well-being sometimes.

      Welcome!

  • #26119 Reply
    Profile photo of Jennifer
    Jennifer
    Participant

    Hello, I’m Jen- FT caregiver to both my parents with Dementia. Mom is advanced, Dad just diagnosed. I have moved into my parents house with my 3 fur babies- a feat that has already proven difficult. However I enjoy the caregiver but have only been at it for a month. I would love to interact with other Dementia caregivers and find the tips and idea’s to make my parents life easier as well as mine. Looking forward to meeting new people. I also work PT for the ALS Association, so I have been around people with disabilities for a long time. if I can be of help to anyone caring for someone with ALS, I’d be happy to assist. Glad to be here.

  • #26218 Reply
    Profile photo of Liz Imler
    Liz Imler
    Member

    Thanks for joining us, Jen! We have a section on our forums for those caring for loved ones with dementia. Here’s a link if you haven’t seen it already 🙂

    http://thecaregiverspace.orgforums/forum/talking-about-your-loved-one/alzheimers-and-dementia/

  • #26236 Reply
    Profile photo of mimi
    mimi
    Participant

    am a beginner to the site. So nice to know there is a group here who knows what it’s like and who cares and is available. Am a caregiver to mom with dementia.She cared for her parents.Her mom had it too. I have had close friends, I used to years ago and then for different reasons I am not friends with them anymore. People have picked on me for different reasons. I have had depression and anxiety for a long time. My mom has always been clingy but always loved me unconditionally and showed it. She suffered from depression her whole life and never felt good enough. We all new she was getting forgetful and assumed she would get dementia. She broke some bones and went to rehab a few years ago and has been going downhill eversince. I took on the responsibilities, but she still made dinner and got up and moved around and seemed ok to do things with her friends or me or both. She has movement issues so after she broke her bones I wouldn’t let her go outside by herself really even to walk. She has been slowly declining over the past few years not wanting or able to do as much. She was in the hospital recently for nothing too big. Dehydration, I was mostly giving her her meds but not making sure she was eating or drinking enough. I didn’t want to tell her what to do more than usual. We always talk about how she doesn’t take good care of herself but I guess just having decent stuff in the house wasn’t enough. After the hospital she isn’t the same she is mentally worse. She is more grouchy, fights me on things I have to help her with everything she says. She claims to not be able to do anything but I will come home an find her up and and acting somewhat normal. But she isn’t the same she lays in her room yelling help all the time and says she cant do what she wants me to. She does it at night too. Then she doesn’t remember doing it at all during the night or day. I am doing everything around the house, for her, for myself and I am really getting scared for her and worn out a lot of other emotions. it felt good to talk. I don’t really have people to talk to. Anyone have similar situations as caregivers?

    • #26276 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Mimi –

      So glad you found our site and have so readily taken to the spirit of what you can do here. You have to take care of yourself, and one of the best and most workable ways for caregivers to do that is to write down what they’re feeling in the forums. Even without feedback, you’ll feel better just getting some of the frustration off your chest.

      I’m sure if you follow on the forums and read some of our articles, you’ll find material that will interest you and help you.

      Your situation makes for a lot of frustration – it’s understandable. There will be tips for you on how to handle all of this if you look through our blog an archives.

      Hugs…Adrienne Gruberg

  • #26270 Reply

    Vonda68
    Participant

    Hi Everyone ! My name is Vonda and I’m from Alabama. So nice to have a group like this on here where you can talk with others about the ups and downs the stresses and strains that us caregivers go through. You know it seems like I’ve been a caregiver a good part of my life in the last several years. I say that because I was a caregiver to a man I was with for 5 years and he died of lung cancer in 2009. Then my Mom got sick with Lymphoma cancer and she passed away in 2010. Now my husband is not in the best of shape and I’m caring for him he has so many health issues. What really makes it hard as a caregiver for my husband is he has gotten to where he cannot remember things anymore you can tell him something and 5 minutes later you are repeating it . Remind you he hasn’t been tested for dementia or anything but I’m beginning to think we need to run this by his Doctor plus he cannot read or write (oh he can write his name) but that is far as it goes and I have to stay on top of his meds all the time. Now his latest issue is what is becoming the BIGGEST crisis (or that’s the way it seems to me) is when he is asleep at night he’s up and down most of the night talking in his sleep and seeing things that are not there (which therefore is keeping me awake at night). This has been going on for quite a while now and it is starting to get on my nerves very bad. I know some of you will read this and sense a little resentment and selfishness in this and I don’t know any of you but that is what I’m here for is to get to know others in this group who can understand what I’m going through. I don’t know how to be any other way except being brutally honest
    I appreciate you taking the time to read this post. I’d appreciate any tips, suggestions, or just kind words to help get through this day after day. It’s really beginning to get next to me and I cannot afford to get this way because I’m the only family he has to take care of him. I go through so many emotions about this silently ( and I know that is not good) just makes matters worse. So if there is any help ANYTHING please respond back to this post I would greatly appreciate it and will be grateful. Thanks !

    • #27349 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Karen –

      I’m so sorry I didn’t see your post until now. Resentment and guilt are silent partners for many caregivers. For me, the resentment came after my husband died. I’d been caring for both him and his mom at the same time and her care happened to deprive us, as a couple, of the good time we could have had.

      Do not feel badly that you feel this resentment. However…it sounds, with the talking and walking in his sleep, that there is more going on here than meets the eye and you should definitely have him checked for dementia and Alzheimer’s. The doctor should be able to give him something to ease some of the symptoms, but we’ll be here for you no matter what.

      Clearing the air by writing out your feelings is essential and was the only way I could get through it all.

      Hugs – Adrienne

  • #26275 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg

    Vonda –

    I am so glad you’ve found a place where you can be honest and say things that people who don’t understand what you’re going through might find insensitive. We won’t be judging you.

    My husband had lung cancer for 6 years, his mother had lymphoma at the same time and I cared for both of them. Towards the very end of my husband’s life, dementia set in for three weeks. Some people thought it was the only way he could deal with the end of his life. Some people just see it as the final step of metastasizing cancer that had gone to his brain. Whatever it was, he suffered severe paranoia and was up every night from about 1:00 am fantasizing.

    Your husband’s downward progression right now shouldn’t be ignored. Whatever you’ve been toughing out needs to get some attention so that your life can be a little more settled. Once you have a real diagnosis, your mind can be more at ease. There’ll be less wondering and maybe some strategies to give both you and your husband relief.

    Don’t feel you’re being judged here. This is a space to vent and express your frustration, anger, disappointment and sense of guilt and to get some relief just by unloading.

    Please keep coming back and posting in the forums. Also, reading pertinent blog articles may give you new insight into your husband’s present state. But please, don’t ignore it and just let it take its course. See a doctor.

    Hugs…Adrienne Gruberg

  • #26280 Reply
    Profile photo of Chris
    Chris
    Participant

    Hello folks, I’m Chris. I am a 10 year survivor of kidney cancer and my husband is a melanoma survivor currently being treated for prostate cancer. Fortunately he is very positive and has a good prognosis.
    I may not contribute much to the site, but I’m hoping that your problems and feeings will help me to support the patients and caregivers who come to the Support Groups which I run in Johannesburg, South Africa. So please understand if I am mostly just learning from you.
    Best wishes to all of you.

    • #26342 Reply
      Profile photo of Liz Imler
      Liz Imler
      Member

      Chris — welcome. No worries on not sharing, but we’re happy to be a resource for you. How inspiring to hear that you run support groups!

  • #26508 Reply
    Profile photo of Kathy
    Kathy
    Participant

    Hi, my name is Kathy and I’m the caregiver for both my parents. I’m an only child, married, no children of my own and live next door to them. I quit my job nearly three years ago to stay at home and care for them. Their health issue’s have become a little worse in the past couple months and sometimes I feel overwhelmed. They are not open to having someone else fill in so I am pretty much tied down here and when I do have to leave I have to leave them alone and try to not worry. Facebook is my connection with “the outside world” and I do have the support and prayers from friends, but they just don’t have the connection as would someone who has walked in similar shoes. I would love to connect with other caregivers who have “been there” and share some of my daily adventures too. Thanks and have a great day!

  • #26511 Reply

    Sue k Green

    It’s admirable that you have taken on the caring for your parents. However, your health is a valuable part of that caring. It is not selfish to think of yourself and your needs. It is responsible.

    If taking a break means hiring outside help. Do it. Your parents will learn to accept it in time. Start with short periods of time and gradually increase the increments and responsibilities. It always prepares both you and them if something should happen to you.

  • #26589 Reply
    Profile photo of joan
    joan
    Participant

    Hello, my name is joan –
    I received, this a.m. an e-mail from Bob.
    I don’t know who he is within the organization, however, he was “offering help” thru this site.
    I rarely receive e-mails from here, which is a relief, since it is (helpful as it may be), one less thing to be bombarded from.
    You see, I feel bombarded from “all sides, – from every which way.
    I just tried to link onto one of the sites for some kind of assistance thru one of the agencies, and the link didn’t even work.
    Whichever path I attempt to take, I am somehow “thwarted.”
    I am care-giving my 88 yr old mother who has Parkinson’s disease – tho, not terribly impacted by it. she is just “frail” and needs lots of supervision. She has excellent faculties.
    I lost my job 2 yrs ago (never have been unemployed this long since my teens). My boss made my life hellish for me with the time I needed to care-give – If I was 10 min late in the morning, she would reprimand me. If I left 10 min early for mom’s med apt at end of day, she would give me a difficult time. She wrote me up once because I mistakenly requested a half day off (personal time) when I needed to discharge mom from nursing home (it took a full day). She wound up “laying me off,” when I know, in fact, she basically “fired me.”
    I have no income. Resources are limited – 2 folks living in a 2 bedroom apt. on SS and a small pension doesn’t suffice.
    I am burned out – fried – from 5 yrs caregiving w/o any help whatsoever from my family. I have 2 brothers. Each ignores both of us….. We have $752.00 to live on for the rest of Sept. I still haven’t paid half the bills.
    I am beside myself at times. Today is one of them.
    If I don’t get mom away from the t.v. now and get her out, she will sit there all day.
    I feel like running away. The agency where mom has a home health aide will not increase her hrs for an aide beyond 6 hrs a weekday – I struggled for some w/e hrs and now they are saying the hrs are “not enough” to warrant their aides (which come from the Bronx) to come …. so I am in limbo re. that….
    We have a wonderful aide from Mon-thurs (she can’t work Fri nor w/e) and I hate to switch agencies (managed and healthcare agencies) at this point.
    ok – thank you.
    best
    Joan

  • #26729 Reply
    Profile photo of Karen
    Karen
    Participant

    Hello, My name is Karen. 5 years ago it became evident that dad (90) was starting to slip and that I would need to be around him more. Sept 1 2010 We purchased a 3br/2ba mobile home to reduce our housing costs. Then in Jan 2011 I had a stroke, at 44. What a journey we have had and we are both still here to talk about it. Since I wasn’t working, I had no health insurance. Luckily it was kind of a fluke, caused by a vertebral artery dissection, and I had no other health issues needing medical follow up. I did and still do suffer reading, spelling, and comprehension issues. Over the years I have made some improvements but still have difficulties. Dad has been such a trooper. Thank God he is very easy going. Unlike my mom who I cared for about 13 years ago. Then I owned a business, was recently divorced, and had 2 kids in grammar school. Oh, and I’m an only child. Now, the kids are grown and help when and how they can. They both know that this is what I need to do now, and support me when I need to vent. However, considering I have already had a stroke, we are all counting our blessings that I have been home and able to heal myself while staying home with dad.
    I am looking forward to being a part of this community to: vent, get support, and give support. I feel that this will be therapeutic in many ways. It is sometimes difficult to get my thoughts to make sense when in black and white.
    Dad is a veteran and I have been weeding thru the paperwork confusion. I have also gotten medical coverage thru our county health department. There is so much more to share and I look forward to doing so in the appropriate forums. Very grateful to have found this site. Thank You!!

  • #26760 Reply

    James_C_Cartee
    Participant

    Wow, It is a pleasure to find this site. A friend Janie recommended it. From reading the participant page, I have gone through much the same. However my wife of 30 years passed a year ago in june. From complication of RA, Medications, and the side effects thereof… I’m still trying to find out who I am after being a caregiver for 15 years.

    • #27406 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      James –

      It’s been four and a half years since I lost my husband and I’m still finding myself. I can highly recommend the grief support group on the site led by Bob Harrison. If you can’t find the group, drop him a line. You’ll find him in the list of members.

      It takes time to discover who you are NOW, but you might be pleasantly surprised at how good your life can still be.

      Hugs,
      Adrienne

  • #26918 Reply
    Profile photo of Judy
    JAK

    Hi, I’m Judy.

    My husband has sarcoma cancer, inoperable and stage 4. I take him to chemo treatments 2 hours away at a sarcoma center. We have a 17-year-old son at home and several grown children scattered across the country.

    Besides my husband, my mother (1000 miles away) is elderly and not doing well, my sister (1500 miles in another direction) is in the later stages of MS, and our special-needs daughter (1000 miles the other way) is going through a medical crisis. I can’t be with any of them.

    Since my husband’s first illness in 2012, I’ve gained a lot of weight and a couple of medical diagnoses of my own. I don’t keep up with anything, not work responsibilities, not my son’s needs, not housework/yardwork or personal business (paying bills or doing taxes!), not even writing thank you notes. Anything I try to do to simplify or delegate seems to make things worse. (Example: Instead of grooming our two dogs, I take them to a groomer. Now I have to schedule them, reschedule them when something more important comes up, drive them over, go pick them up, get cash because she doesn’t accept credit cards or checks…)

    I’ve told pieces of this to family and friends, but no one knows everything I have on my plate. Even to me, it sounds like whining. I don’t know what I can ask someone to do for me! When someone says, “What can I do?” and I give them a task, they forget to do it, so I just don’t ask for help.

  • #26919 Reply

    Bobi_Bailey_Toward
    Participant

    Hello all; I am 54 a small business owner, and I recently (may) took in my mother who is 78, type 2 diabetic with back issues. she has had one hip replacement and 7 lower lumbar fused. I live with my husband, and 22 year old daughter (shes in basement) mom came with a small poodle, and my daughter has a large 3 yr old dog (my grandpup) and I have a standard poodle, (adopted from a customer with alzheimers a year ago) and two large bouvier dogs. since taking my mom in, my husband has had Achilles tendon surgery so he has been home with her for 3 months, maybe returning to work next week depending on dr.
    I have chronic lymes desease, and am an only daughter with one older and one younger brother and one who don’t count at all.
    so will be posting my frustrations off and on as I can. my goal was to allow her last years to be filled with caring, compassion and love,but am now seeing that may be a difficult task sometimes.
    we have already had some really bad days which is what led me to this forum.
    so thankyou for the add. now off to make me some doughtnuts. 🙂

    • #27404 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      POST AWAY! THAT’S WHAT WE’RE HERE FOR.

      Rant, cry, laugh – whatever you feel like doing. Keep us up to date and ask for help and advice if you need it.There’s a lot of experience and wisdom.on these forums.
      Hugs-
      Adrienne

  • #27346 Reply
    Profile photo of CodyLa
    CodyLa
    Participant

    Hey everyone!
    I’m Cody. I’ve been taking care of my uncle. I’m proud father of Patrick.
    It’s really nice to meet you all and find forum like this one 🙂
    Happy Monday

  • #27394 Reply
    Profile photo of Lorrie
    Lorrie

    Hi,Lorrie here,
    Going to lawyer today. trying to get powers of attorney for mother who has frontal lobe dentia. She currently lives in nursing home,but has her memory so far. Was wondering , if lawyer can’t get her to sign paperwork needed to sell house,then what is the next step? I don’t want guardianship…too expensive,and I already take care of her finances,house bills,upkeep of home,etc…maybe I should leave the house vacant until she passes awaY Anyone have any legal expertise?

    • #27405 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Well –
      I’m not a lawyer, but the power of attorney will let you do the things that need to get done. If the house should be sold and your mother has no problem with that, then do what you have to do to sell it.

      If the house is an issue your mother won’t budge on, with POA, you can override her, but maybe rather than just let it sit empty while she’s not there, you might want to think of renting it.

      Just a thought

      Hugs,
      Adrienne

  • #27415 Reply
    Profile photo of Lorrie
    Lorrie

    Well,I went to the lawyer.She told me that since my mother is incapacitated,that I cannot get a power of attorney.Also,I can’t move into the house or rent it.So the house will sit,until she passes away.Also my father put my name on all money,but lawyer says mother is entitled to 1/3in the state of Florida. What a big mess.I will continue to pay $6500 a month,and also the medication bill,until all the cash is gone.

  • #27490 Reply
    Profile photo of Abigail
    Abigail
    Participant

    Hi, I just started a caregiving blog. I am 28 and have been caring for my mom who has FTD (frontotemporal dementia) for 4 years. Here’s the link if you would like to read it!

    http://theunlikelycaregiver.com/

  • #27689 Reply
    Profile photo of Paul
    Paul
    Moderator

    Hi Everybody,

    I’m Paul; the newest member of the Care Giver Space operations & implementatoin team.

    While I’m learning all about the site and the inner technology workings, I’ve also been spending plenty of time “putting myself in your shoes.” In most ways, I can only imagine the deep commitment folks are giving to their loved ones in providing ongoing daily support. I know that there are as many different kinds of “Care Givers” as there are folks needing this vital support. I know that every hospice setup has its own twists and unique challenges… and I look forward to continue my learning while supporting you’all that much more.

    As background, I hail from Providence, Rhode Island, and have lived most of my adult life – from the start of graduate school in Philosophy to the present – in the New York City area. I had a 10 year stint working in leadership development, counseling support and administration in the college housing environment in this big city. Then I changed course, working over 10 years as a desktop computer support person, mostly at Time Inc.

    Now I’m onto the next phase of my working life: focusing my tech and counseling skills, supporting all of you who give care so faithfully.

    Among other things, I’ve been asked to get the online support groups going again. And as I learn more about ‘the path of the caregiver,’ those support groups will start to take on a deeper and more comprehensive perspective on your work.

    Suffice to say, I’m glad to be able to put my skills to work in service of a caring community. A radical idea just a few year ago; today its powered by the forces of social media and online connectivity.

    In caring solidarity,

    Paul Nocera

  • #28168 Reply

    Meg Koczorowski

    Good morning and welcome Paul.

    I am a caregiver for my son who suffered a severe traumatic brain injury at the age of fifteen.
    I had to make a choice between staying by his side as I had been doing, or return to work and leave him while he couldn’t speak, think, remember and was still emerging from the affects of a coma. Because I was with him. 24/7 365 I noticed he was chocking on mucus plugs stuck between his nose and mouth. Things regular nurses would never have seen because they just don’t have that much time to spend with each patient.
    Although I feel as my identify has morphed into my son’s and I have none of my own; I wouldn’t change my decision ever.
    One thing that I would change is that caregivers are recognized even though we aren’t paid. I have to list unemployed when I go places…I am not unemployed. I work harder than any paid job and I have no income, retirement, 401k, dental or sick/vacation days available.
    Welcome to the world of a caregiver.
    Meg

    • #28169 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Meg –

      Welcome. Don’t think for a minute you don’t have your own identity. YOU come through loud and clear in your introduction post.

      You are most definitely not unemployed and I want to thank you for us all – I am all about recognizing caregivers and our special place in the world today – medically, sociologically, politically – we are so important and it’s absolutely time we got some recognition.

      Hugs – Adrienne

  • #28403 Reply
    Profile photo of Christi
    Christi
    Participant

    I’m Christi. I am a 37 year old SAHM to 6 kids ages 2-10 and about to become the full time care giver of my permanently disabled husband. 5 months ago, my husband was involved in a car accident. The initial report I got was several broken bones. I thought no big deal, in a couple of days he will be wanting to come home and irritated he’s been kept that long. I never imagined over 5 months later he would still be inpatient in his 3rd facility and everything about our life would be changed. He is expected to come home within the next few weeks, depending on decisions made by insurance. Currently, we have a projected discharge of 10/21 but his care team at the facility will keep him longer if we can get it approved.

    The man who has always taken care of me, handled everything, provided the sole support for our family, and was my best friend is now someone completely different. He suffered traumatic brain injury, heart damage, broken bones, respiratory distress, apoctic (?) brain injury from lack of oxygen after his heart stopped, vocal chord damage, and a whole long list of other complications. He cannot communicate clearly, he makes up stories, he can’t feed himself, use a toilet, or even sit up unassisted. He will be in a wheelchair for the rest of his life. He has to have ground mechanical soft foods and honey thick liquids.

    I travel 3 hours each way once a week right now to be with him while a friend keeps our kids, then another time to take the kids to see him. I’ve been told that the last week before discharge I will required to stay with him 24/7 and learn all the details of how to care for him. They are talking about him coming home in a diaper, with a catheter, needing a Hoyer lift, and possibly even a hospital bed in the living room. This is a 6’6 man who still weighs about 200 lbs. I cannot begin to image how I am going to be able to care for him.

    Over the last 3 weeks, I have remodeled our bathroom, changed the layout of everything in the whole house, started working on finding and financing a vehicle that will accommodate him in his chair and kids and tried desperately to come to to terms with all the changes in our world. I feel completely overwhelmed and he isn’t even home yet. I’m here hoping to find support and guidance as I begin this new chapter in my life.

  • #28442 Reply
    Profile photo of Aaron
    Aaron
    Participant

    Hi, My father was diagnosed with a terminal disease about a year and a half ago. I am and only child, with a wife and two children. He and I were always very close and have been working together for the last 15 years or so. The disease has prevented him from being involved with his life long passion . Up until recently I have kept pretty bottled up emotionally, however the last 6 months or so I have noticed some severe changes in my emotions. I am trying to shield my children from it as they are so young, as well as being there for my Mother. My wife is a medical professional, and works shifts opposite of myself, and she too does not handle grief well (ex. at a funeral of a good friend of mines that my wife did not know, I had to leave a few minutes into it to console her) so I tend to shield her as well. I have no close friends anymore and as such have been feeling a sense of lonliness and isolation that I have never experienced before. I feel like I am losing my mind, my marriage is falling appart, and anytime nobody is looking I can hardly hold back the tears and emotion. Thanks for listening.

  • #28884 Reply
    Profile photo of Michael
    Michael
    Participant

    Hello,

    My name is Michael and my 92 year old father and I have lived together for several years. Without me, dad would not be able to live by himself.

    I am 61 years old and I have PD and other health issues but nothing like the heart problems that dad has. In the past couple of years, dad’s eyesight has gone down hill and he can’t hardly see anything near by without the use of a mag and his hard of hearing adds to his health issues. Dad has heart issues since first having his heart attack back in 1971 and a quad bypass in 1984. Dad has to have a walker to get around the apartment but his lack of strength and balance issues has caused him to be a fall risk. Back in March, dad fell in the kitchen and ended up braking his hip. After hip surgery and a 25 day stay in the nursing home for rehab, dad was finally able to come home.

    Dad had his regular scheduled appointment with his heart doctor and he had an echogram test performed to see if his heart had caused him to fall. It turned out dad has a bad aortic heart valve and there is nothing medically they can do. But he might be a candidate for a TAVR procedure to replace his heart valve without having surgery. But before dad could go back and check on it, dad fell again in June and broke his other hip and spent another 25 days away from home.

    Dad was getting really depressed due to this and his report on his heart valve. I had to leave my seasonal job in the summer to care for dad full time and prepare the apartment by reducing his fall risk. I did not trust leaving dad alone and have him fall again. His health and well being was more important than my job.

    Dad was getting emotional and thinking he was in the process of dying. I said, of course you are not. I assured dad that is not so and things would be ok. But that left me an emotional wreck at the thought of losing dad after all these years. I was all alone and my only family member lives in NJ and we live in Ohio. We have no other family to help and I reached out for her. She and her husband came down and they helped dad and I.

    Dad had an angiogram to see how his heart was to see if he could have the TAVR procedure. It turns out his heart valve was not as bad as first thought and that made dad very happy. In all of this process, I felt that I had to get dad out of his depression and with his doctor giving dad antidepressants and the help of my sister and friends, dad is out of that thunk, along with me. I was being worn ragged in caring for dad, both his medical needs and removing any fall risks in the apartment. I finally got dad a Hoveround power wheelchair for dad to get around and a transport chair for outside the apartment. I got dad new hearing aid and he can hear much more better. I found out the lack of hearing is a big cause of depression and dad was frustrated on not understanding what is going on and being confused. Now I will get his eyesight checked again and work with the Cincinnati Association of the Blind to get dad low vision aids to assist dad in seeing things close up.

    But I know that eventually dad’s heart will begin to fail, even if he could have that TAVR performed. I don’t even know if he would even be healthy enough to have it. At the moment, dad is not showing the active signs yet like hard to breath at rest, chest pains, heart pounding away and so forth. But that is a matter of time. Maybe in a few years or maybe sooner. That is the thought that is going through my mind and not knowing what to expect. I don’t want to discuss this aspect with dad present as I ask his heart doctor these questions. I don’t want to get dad thinking these thoughts, at least not yet.

    So I am playing it all by ear and living each day one day at a time in caring for dad. We will continue to go to his heart doctor for his regular checkups and go from there. I feel that I have crossed a major hurdle by reducing dad’s fall risk by the use of his power wheelchair. At least now he can also get outside now. But one thing that I agreed to do was dad asking to allow him to continue doing things that he can still do and not sit down and not do nothing. Dad is active in that aspect as he always had been. As long as his health allows him to do things without dad getting tired, then I am all for it. Anything for dad to keep active and exercise the mind. But besides me to keep dad company and his spirits up, dad has our cat, Corn Flake, to keep him company and both of our sprits up.

    Dad is very thankful all that I am doing for him and my sister is also. She is my only family member and she lives over 650 miles away in NJ. At the time being, my PD is stable and I can still do things for myself with the meds that I take.

  • #28903 Reply
    Profile photo of
    Anonymous

    My name is Melissa. I have a 16 yr old son who has been diagnosed with schizophrenia, OCD and severe depression. My husband and I struggle each day with how to discipline him. He recently had his meds increased and it appears that he may finally be at the level to help the most.

    I have looked for others who have the same situation and have had no luck. I came across this site while looking at another mom’s blog.

    Thanks,
    Melissa

  • #29073 Reply

    My name is Cindy, and I have a Army vet son that I am caregiver for. He has PTSD, TBI, as well as other things. The problem is you can actually see his disability. But as a caregiver you are aware it is there constantly.

  • #29310 Reply

    Melanie Hannans
    Participant

    Hi
    I have been on this site for some years but forgot how to navigate. LOL! I have taken care of both of my parents for the last 18 years and they are now both deceased; my dad in 2006 and my mom on August 14th of this year. We buried her the day before my birthday the 22nd. I am in a state of limbo. I was always a very motivated, actually driven person; but I have no idea of where to go from here.
    I had three businesses; a singing career, a cleaning service, motivational speaker and I was a teacher. I no longer have any of these. I am 59, and exhausted. I am not a person to just stop moving forward I’m unwilling to do anything right now. I only want to remain at home and not face anyone yet. I have forced myself to go out but frankly, I am so accustomed to being on my parents’ schedule that I still don’t feel free to do my own activities. My mind keeps telling me I need to get back home to prepare meals, bath, etc. I would like to get back to the things I love most but I am immobilized.
    I didn’t get the support of my siblings. I only got insults, criticism, and them taking over all of my parents’ affairs, without my knowledge. In so doing, it has left me in the dark about my parents’ home in which I live, created some further financial woes but I can live in the house as my own. I have gone from being an upbeat, happy woman who smiled all of the time to a person who just barely gets up every day. The difficulties my family created has put off my grief in order to take care of the basic necessities and have left me feeling angry, resentful and disgusted (feelings I never had before); but above all I feel hurt. I and my children gave up a contented life in a different state to take care of my parents and not one of them gave up a thing. To add insult to injury they told a bunch of lies about their participation. I don’t want to feel these negative feelings toward them, but I do and I really don’t want them to be a part of my life right now. Perhaps once I resolve my feelings toward them, things will change. Right now I don’t care to associate with them in any way.
    I would like to get my life on track again. I also need to vent to someone for some of the things that I have experienced at the hands of my family. I was in counseling but that is no longer available to me. I hope being back on this site can offer some insight into how to go on from this most confusing, painful period in my life. Thank you for all you do for caregivers.

  • #30573 Reply

    Hi I am the caregiver for my 94 year old father.. he is really starting to decline but still functions pretty good. he has good days and bad days…. some days he is sharp as a tack… others not so much… everyday is a new learning experience in how the elderly mind works.. its a constant assessment as to his capabilities and balancing the fine line between letting him keep his independence and his dignity and keeping him safe and healthy… some days its just funny what he does not remember and what he does… . some days I am so exhausted I wish myhusband and I could take a vacations… as he did not not sigh up for this and I can not leave my Dad alone for more than a few hours

    • #30748 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Barbara –

      Welcome to The Caregiver Space. Your situation is a textbook case of what happens with an elderly parent. I applaud the fact that you want to respect his dignity and independence but know that his safety comes into play. Your sanity comes into play as well.

      Will you know when the time comes to have someone else bear the burden of his care——I don’t know your finances of course, but he may soon need to be in a residence. How do you feel about that?

      Please keep coming to the site and write your feelings out in the forums——either vent or ask questions or just write out your feelings. Also, read about how other people are dealing with similar situations. All of a sudden, you won’t feel alone in this.

      Hugs – Adrienne

  • #30574 Reply
    Profile photo of Kathy
    Kathy

    Barbara,
    I can totally relate with you. My dad is much the same, this sounds like our days. I also care for my mom and leaving them alone is not an option except for a few hours between meals. I also have not been on vacation since 2011. My husband has gone without me, which isnt fair to either of us, but life isnt fair. It’s not right for me to keep him from living. He has been very patient and I do appreciate that. I know that in the end I still will not regret being here for my parents. It was God’s will for me to do this and I will do it with His help. Hang in there and find those moments of peace as they will keep you going.
    Bless you on your journey,
    Kathy

    • #30608 Reply

      thanks Kathy… today was on of the no so good days… I told he we need to refill his prescriptions nd he told me he doesn’t take any prescriptions but I give him his meds everyday… went to the docs and she gave us a scrip for something that is supposed to keep his mind clear…we will see

  • #30586 Reply
    Profile photo of Lisa
    Lisa
    Participant

    Hi! My name is Lisa. I care for my son, 24/7.He suffered a gunshot to his head feb 7, 2011. He is totally dependent but such a Blessing. I’m thankful to find other caregivers because I’m sure many agree….this journey feels so all alone at times.

    • #30749 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Lisa –

      Welcome to The Caregiver Space. I hope that you will find other parents who are going through a very lonely time. It’s the number one complaint of most caregivers.

      Please join our forums – just go there to vent, to ask questions, to find other parents, to start your own topic and ask questions.

      You’ve found a community where others will relate to your situation.

      Hugs – Adrienne

  • #30610 Reply

    Stephanie S
    Participant

    Hi Everyone,
    I think my story might be unusual, but I am guessing at least one person in this world can relate. My grandparents kidnapped me from my biological parents when I was under 2 years old. We moved 13 times to stay hidden from them. This was 1980-1990s so hiding a kid was fairly easy. At 15 I found out they were not my biological parents, but I continued to live with them and call them mom and dad. In 2002, my dad ended up with lung cancer and passed away after a 88 day fight. I was 19, and ended with with my mother who had always been physically and emotionally abusive to me. Over the years she has needed me (broken arm, hip replacement, etc.), but on December 26th 2014 this all changed to a more serious level. She lives 6 hours away from me ( I am in Los Angeles, and she is in Arizona). I am her healthcare POA, but she doesn’t always let me know what is going on. Her friend called me to tell she was in the hospital. It began as a blood clot in the leg, and she did not want me out there in her business. During the hospital stay they found a tumor. While getting her ready for the surgery to remove the tumor a blood clot went to the brain and she had a stroke. She now suffers from vascular dementia. The doctors wrote her off, and shoved into a nursing home without a final diagnosis. I had to fight insurances and doctors to get a diagnosis. By June, almost 6 months into this joinery the official diagnosis came in, Ovarian Cancer stage 3. Due to the stroke, she can’t have surgery. Due to her age 76, she wasn’t a great candidate for successful chemotherapy. I had the port put in and attempted to send her to chemo for 2 months. She would’t go, and I don’t have anyone to sit with her in person. At the end of October I officially put her on hospice care, and moved her into a different nursing home, closer to the two friends she has left. Her two friends are in their 80’s and don’t drive too far. I can’t move her out of the state due to the insurance, no one was willing to live with her so her house sits empty. I can’t move her in with me because of all the stairs and no one could watch her during the day. The distance makes this near impossible, and the fact that before this (and during this) she still doesn’t really like me. I work full time, and am also in graduate school.I used to run a children’s ministry program at my church, and had other hobbies but they are all gone now. I am solely focused on work, school and coordinating her care. I can admit that I don’t 100% like this woman, but I refuse to give up on her. I made multiple attempts to get her two sons and other family involved but I always get the same answer. She has done too many people wrong and they are not willing to forgive her and help. While I understand that I am not physically with her everyday, I do handle every medical call and decision regarding her care. I had to find insurance coverage for her when medicare stopped paying. I put up her home as collateral. Next I am trying to plan out her funeral on my own dime. She is in large amounts of debt, and the state now takes 95% of her money for her share of cost. I really wish my family understood this isn’t all about her, and how mean and nasty of a person she always has been. This is also about me, and how I am loosing my sanity. I suffer from anxiety, panic attacks, insomnia, stomach issues, weight loss, and depression. The lady from Nordstrom who sells me my make calls me more often then any of my family. I always see these nice stories or stories that people got this way after dementia, but we know there are jerks in the world and my mother is one of them. She has never liked anyone, and will steal money any chance she got. Nothing has ever been her fault, and she still blames me for ruining her life. I am doing my best to continue to suck this up, and do my job here. My friends remind me that she is terminal which means she will pass away sooner or later, which sounds horrible, but she is just torturing the people around her like she has always done. Sorry to whine, but I never dreamed that I would be responsible for my kidnaper and abuser in this manner. But on the hand seeing how the rest of the family would have left her alone, I am glad I can be here. I am just tired, but I know I could always have it worse. I see that many of you do this for years on end, and I am only going on my 11 month.

    Thanks for reading….

    • #30747 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Stephanie –

      Yes, your story is unusual and there are only aspects of it that I can relate to. I became a long distance caregiver for my mother for three years after my dad passed away. He’d been her constant companion, even during the throes of his own cancer.

      My mother was also verbally abusive. She was a textbook case narcissist and alienated just about everyone——nothing was ever her fault and her insults were constantly flying. Not a fun person to be around.

      I was lucky that she was not a dementia patient. It was COPD. I would go down to Florida from New York for at least a week out of every month——I’d promised my dad that I would, so that he could die in peace knowing I’d be there.

      Your mom has a lot going on. You mention how some people become sweeter with it——some people become more angry and even more physical with it. I’ve seen more Alzheimer’s patients turn sweet as pie. I will give you the advice my sister-in-law gave me. “Treat her like a crazy person. Yes her to death.” It doesn’t pay to fight with her because it will only agitate you. She doesn’t know what’s going on anymore.

      Take care of the paperwork for the insurance and the hospital. Just plow through it. When she passes, you will know you’ve done the right thing and never have a feeling of guilt.

      Continue to post here. Go to the forums that apply to you and see who you connect with. We are in the process of forming online support groups that will go live in January. Please look for them. They’re free, of course. Also, go to the forum vent space——it always feels good to let it out of your system. It’s toxic emotional juice.

      Hugs…Adrienne

    • #30750 Reply
      Profile photo of Lisa
      Lisa
      Participant

      Thank you Adrienne

  • #30616 Reply
    Profile photo of Keith
    Keith
    Participant

    My name is Keith, almost three years ago my wife had a massive stroke at the age of 37. We have two children 18 and 6. I joined last night in a low spot. Today was some better. I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over , I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me . There is no break from this load and I am getting tired. People tell me I need to take sometime for myself, but seldom does this happen. I could go on and own , it feels good to let it out. Thanks

  • #30617 Reply
    Profile photo of Keith
    Keith
    Participant

    Did I mention I am lonely like never before in my life.

    • #30746 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Keith –

      I am so sorry to hear about your wife. 37 is way too young to have been struck down by a stroke. You are blessed to have people that will help you watch her so that you can work. Getting out of the house and keeping things as normal as possible is very healthy behavior.

      Loneliness and isolation is by far the biggest complaint caregivers have. Suddenly, your world becomes so limited. Like having tunnel vision. Taking time for yourself may just be your getting out and going to work. Some people can’t do that.

      I founded The Caregiver Space for people to be able to connect with other caregivers——they’re the only ones who really know what you’re going through. I encourage you to post to the forums regularly and to keep a journal, or blog on the site. You’ve already experienced how good it feels to let it out. It’s toxic keeping it bottled up. We have a special forum just for venting. Carry on to your heart’s content and no one here will judge you. Been there, done that and all.

      Welcome. I like seeing male caregivers using the site. We are forming some online support groups that will probably commence at the start of 2016. At least one of them will be a men’s group. There will also be a spousal group——in fact, that one may be up already.

      Stay in touch. You can contact me directly at adrienne@thecaregiverspace.org.

      Hugs – Adrienne

  • #30620 Reply
    Profile photo of skgimages
    Sue k Green

    The “Well Spouse”
    By Sue k Green

    The “Well Spouse”

    accepts her responsibilities with love and not remorse.

    understands the difference between ‘need’ and ‘want.’

    is caring and concerned; yet learns to discriminate between ‘help’ and ‘enabling.’

    learns to move outside the isolation fraught by necessity.

    recognizes her needs as well as those of her partner.

    finds time for self; exercising good judgement and balance with restraint.

    Without all this, there can be no “Well Spouse.”

    © Sue k Green 10/30/2015

  • #30621 Reply
    Profile photo of skgimages
    Sue k Green

    In Land of Miracles
    By Sue k Green

    Then…
    I waited, while doctors performed miracles
    with modern meds; busting up the dam
    preventing blood flow to his brain. Time,
    skill, and survival all lay in the hands of God.

    Now…
    I watch him stagger along the ‘yellow brick road’
    of recovery where nothing is as it was before;
    small steps are miracles, words take on a whole
    new context, we watch each new signpost with vigil,
    and friends and family have taken on new character.

    © Sue k Green 11/7/2015

    • #30745 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Sue –

      Welcome to The Caregiver Space. It ‘s wonderful to see someone using creative writing as part of self-care. I myself do that and encourage other members to do that in a video post that I do for us from time to time in a segment called “The Page Listens.” You seem to get that.

      I see that you are adding copyrights to your work, and I wanted to know if it would be okay for us to repost them, if we include the copyright and give you credit?

      We are also creating a creativity initiative and hope that when it’s up, you’ll continue to be a contributor.

      I took care of my husband for 6 years and his 90 year old mother for 3 years concurrently in my home. I’m a Well Spouse member as well, and it’s good to see some “cross pollination” occurring.

      Please get back to me via email at: adrienne@thecaregiverspace.org, so that I know how to reach you with further details of the program I mentioned. Also, let me know about reposting your list and your poem. Please continue to post them. They’re wonderful.

      Hugs, Adrienne

  • #30814 Reply
    Profile photo of Tami
    Tami
    Participant

    I care part time for my Mom who has fibromyalgia and other health issues. I am hoping this group might help me understand the world of elderly care better as my responsibilities increase. I am also hoping this group will help me continue to establish healthy boundaries. I currently do her grocery shopping twice a week, I arrange for someone to clean, I’m on call for fixing things that break, and provide emotional support; she is very emotionally dependent on me. I will soon be doing her finances. I am a stay-at-home Mom of 8 yr old child with ADHD, a 5 yr old and a 2 yr old (I’m not home as much as I thought I’d be). She is in the process of waiting to see what services her insurance covers.

  • #30818 Reply
    Profile photo of Ali
    Ali
    Participant

    My name is Ali, I am 21 and I am a Caregiver at a local Care Center. We have 35+ residents on our floor. Some of which who do most things on their own, others who do not. I have only been in this field for 7 months. I’ve had quite a few residents pass since I’ve been here, but I’ve never gotten so close to them that it hurt me severely. The other day a Resident of mine (who I don’t do much for) fell on her way to the bathroom and broke her pelvis. She was sent to the hospital yesterday afternoon. Earlier today, I texted my supervisor to find out if there was any updates. She notified me that she was not a surgery candidate and that they were sending her back to our facility today. She is bed bound with a catheter now. She has morphine for pain. She’s not doing well. I’ve spent the majority of my shift in her room, holding her hand, swabbing her mouth and just spending time with her. I’ve never felt this way and I don’t know how much of this hurting I can take. My co-worker says that in time, it does get easier. She says that especially since I’m so young and haven’t been in the healthcare field very long, that it is extremely hard at first. What do you guys think? Is she right? Or is this something that will never get better?

    • #30870 Reply
      Profile photo of Paul
      Paul
      Moderator

      Wow Ali.. that is huge of you.

      It is very important for you to gather up some wisdom about your situation. As a conduit for caring, you are also a conduit for grieving. With time, you may find that you can grieve less because of the caring and devotion. But the emotion and the sense of loss is part of our humanity too.. and no one wants you to lose your sensitivity to what is lost. Least of all will be those folks you care for. If their age is well advanced, you are a huge part of helping them exit this world. It’s something many people just can’t do… so I hope you learn to see and appreciate the depth of your inner strength.

      Keep talking… keep writing… keep connected. If not here, then find outlets to think and feel through your experiences. We’re social beings often times stuck in isolated situations. Keep up the conversation and with it, your spirits.

  • #31138 Reply
    Profile photo of John
    John
    Participant

    I’m Johnny From Brooklyn. Some people used to call me Louie The Wrench and Frankie Five Fingers but we don’t talk about dat anymore. Sure hope doz old warrants have expired. Anyway…

    My wife had brain aneurysm surgery in 2010; gone is the woman I fell in love with. I have been her caregiver for the past 5 1/2 years. We were married for only six months when the docs found it completely by mistake…we were 62 and 61 at the time. What should have been a simple 90-minute craniotomy for the clipping of an un-ruptured aneurysm turned into an 8-hour ordeal. Aneurysm was undetectably massive as it was wrapped around her artery and ready to burst. Saved her life; but…

    The result is a woman in her own world, “behind a pane of glass” she says, suffering from severe depression and anxiety. Been to every doc…tried every drug. They almost killed her in March with a bad drug interaction that no one caught. So we just survive…and I have to do everything plus work full time.

    Been through this before but at least it had an ending. My first wife died of breast cancer in 1983 at age 34; our daughter was 5 at the time. Was her caregiver for 4 1/2 years. Guess it was my apprenticeship so I’d be ready for this encounter with despair. The worst part with both events is the lack of intimacy…I’m all alone sitting on that fragile tree branch swaying in the wind. There’s nothing I can do to make her better or to change her situation in any way. The helplessness is palpable. Neither of us know how we can survive like this for another 20+ years.

    And she’s no dummy about what’s going on. She was a psychiatric nurse working in state mental hospitals for 30 years before this forced her to retire. No stamina, memory loss, micro-writing, weak right side and more ON TOP OF the depression and anxiety. We sleep in separate bedrooms because she needs 8-10 hours of completely undisturbed sleep to have any hope of functioning the next day. And even then, she just sits and watches TV, takes a nap, eats, watches more TV and then goes to bed for the night. This is a life? And all I can do is watch and be the sole witness to all of this.

    All these words are really meaningless because my inner feelings are completely indescribable…and no one understands what it’s like to go through this…for the second time in one lifetime. Seriously thinking of going real Old Testament and changing my name to Job. After all, what’s next? Boils and leprosy?

    Thanks for listening..

    Question: How do I post our story? I don’t see a button to let me do that.

    JC

  • #31162 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg

    Hi Johnny——I’m Adrienne from Manhattan and I’m the founder of this site. They used to call me Big A.

    I didn’t know there was such a thing as a simple craniotomy. The outcome of the surgery is clearly tragic and I don’t want you to feel no one understands what you’re going through.

    It’s hard. Many men have a need to be able to fix things, and of course, this is unfixable. But you’re hanging in and I imagine you love her very much. The lack of intimacy and the feelings that bubble up as a result of it are very familiar to many of us. I don’t know your whole story, and I’d like to.

    By posting your introduction as you have, your story is posted in the Forum section. If you’d like to write more about your story and the feelings that are indescribable, you’re welcome to expand on what you’ve written. We’ll have to look at it, edit it for grammar (not content) and send it to you for approval, but we could put it in our blog or possibly feature it in our weekly digest.

    We will soon have our online Men’s Support Group up and running and I hope you’ll join. One of our regular contributors, Bob Harrison, runs the Spousal Support Group and he was a caregiver to his wife when she had cancer. Dave Nassaney, another of our male contributors, does a regular radio show on Tuesdays called The Caregivers’ Caregiver. I’m a regular on the show (except this week I’ll be out of town) – he’ll be on air Tuesday, 4:00 EST at: http://www.starworldwidenetworks.com/index.php/HealthStar/detail/dave_the_caregivers_caregiver
    and he’ll be taking calls from listeners.

    Please let me hear from you re: posting your story.

    Hugs…Adrienne

  • #40693 Reply
    Profile photo of John Norrell
    John Norrell
    Participant

    Greetings – my name is John, I am not an alcoholic but it’s a possibility given the past year 🙂 I am new to the site (just found it today) and still somewhat new to being a full time caregiver. December 12, 2014 forever changed our life. Prior to that day, I was coping with adjusting to a new city, we now live in Louisville, from having always lived in small towns and the city was eating me for dinner every day. The adjustment was a tough and long road. However, I quickly had to get over it on Dec. 12.

    On, Dec 3, 2014, my father-n-law had a mild stroke. While he was hospitalized to clear out some blockage, he ended up with a rectal bleed, so, that became a priority and took surgery to correct. He was sent home after a couple weeks. Pretty much fully recovered.

    On Dec. 12, my husband took him back to the hospital. Larry, my father-n-law, checked himself him. Was walking. Talking. Pretty normal guy in pretty good health at 69. Some rectal bleeding was back, and at first, nothing major. He was admitted and placed in a room. I could go into a great amount of detail as to the neglect that resulted over the course of the next 12+ hours, but I will just skip to the end. He had another stoke, heart attack and major gi bleed, this one leaving him pretty much a vegetable. No movement in any limb, very limited speech as in, he could mumble yes and no, although they didn’t really match up to the questions you asked and you never received the same answer twice for the same question.

    He was in the hospital from Dec 12 to Dec 26. On Dec 26 he was stable enough for us to move him to a rehab center in Louisville. Larry lived in the Appalachia area on a 125 yr old family owned piece of land, miles and miles and miles from civilization. Now, we were moving from there to Louisville for rehab. At that time, doctor’s were hopeful he would regain enough ability back to return home and live independently as he did before these events. 

    He entered inpatient rehab on Dec 26 and within a few weeks, he was back in the hospital with another GI bleed. After a week or so in the hospital, it was back to rehab. I am skipping all the horribleness of the weeks and weeks in the hospitals but let me tell you, nothing in my life had ever prepared me for all that we had to assist with while he was in the hospital with all the GI issues. 

    During his first two week at rehab, we trusted the system. Both of us are in our mid-30’s so totally not prepared for any of this and honestly thought we had a good 20 years before we had to deal with my husband’s parents getting older. He is an only child. We didn’t have a clue. It wasn’t until other family members at the rehab center started telling us we needed to be there more that we were tuned into what was really happening. Larry was a 2 assist and could not do anything for himself. No even move a hand or finger to press a call button. We were told that someone would stop in every 10-15 minutes to check on him. 24/7 and that someone would be feeding him. You know. all the typical brochure awesomeness they tell you through admissions, except we fell for it hook line and sinker. After a couple weeks, we realized none of this was happening. Nurses were still expecting him to hit a call button for assistance. HELLO! he can’t! he might as well not have any limbs!!! It was 30-45 minutes before anyone changed his briefs. He was being fed, after everyone in the main dining room was fed, it was cold and one person was pushing food down 6 patients mouths at one time. For $9,000 a month, you would think you would get more.

    So, I left my job and decided I would be there from the time he woke up until the time he went to bed, 7 days a week. He care immediately improved, his medical health improved which led to him making amazing progress in therapy. I have no ill words for the facility. Once I began working there, I realized it’s not a matter of lack of caring, it’s a matter of lack of people. There just are not enough people to care for everyone like the brochure says. I became a member of staff, helping with Larry and anyone else in the center. It was wonderful, rewarding, exhausting and frustrating at times.

    About 50 days into his rehab, it became apparent he was not ever going to go back home. The idea of him being in a facility just scared us. So, we decided with his income and my husbands income, I could continue to put my career on hold, we could move Larry in with us and I would be his primary caregiver. We finished the additional 50 days in rehab and moved him in with us.

    I say move him in, but this was after we quickly found a house that suited our base needs and had it totally remodeled for Larry’s needs. The remodel took weeks longer than expected. We fought and fought with contractors and ended up firing the main contractor and his crew, which left my husband and I to finished up and get the house move in ready. I don’t what we would have done without Lowes and Home Depot turning us into experts on everything you need to remodel a house while at the same time, learning all that it takes to become full time caregivers to Larry. How we both didn’t lose our minds during this time is beyond me.

    So, we move into the house. It’s not perfect. Larry’s bathroom is not finished. The interior needs painting. Areas still need sheet rock. Some electrical and plumbing still needed to be done. We did get the elevator life installed in the garage thank goodness. It only took my husband and I 3 days of reading the manual and learning how to use a hammer drill (which took 3 trips back to home depot for hands on training) but we did it!

    Larry had his medical bed, a wall mounted TV, every station he wanted, his bed table, wheel chair, walking devices, roll in shower, toilet, hardwood floors, open floor plan, elevator lift. What he did’t have was a sink, mirror, lighting in the bathroom, much room to move around in his wheelchair since boxes and remodeling stuff was everywhere, but for the most part, he was set.

    Oh, I forgot to mention, 3 days before we moved in, Larry had another heart attack. The day before we were suppose to move in, they found cancer. So, all that delayed the move in as well. We would take turns staying at the hospital with him and working on the house. 

    Late summer into fall began to slow down for us somewhat. We would enjoy evenings on a new huge deck. It was the largest house by at least 2500 sq feet that any of us had ever lived in. It is a really nice home in a really nice neighborhood.

    By mid September I was having issues with my shoulder, so I went to see a doctor. I had torn my bicep in 2 places from all the lifting of Larry. I had also developed carpal tunnel and have disk issues in my upper neck and lower back. Through everything, no one tell you about the physical toll it takes on the caregiver. I had to have surgery on my shoulder Nov 6, have wrist surgery coming up on Friday and will be having surgery on my spine next. So, right now, my husband is caretaker to both of us.

    We both continue to struggle with taking care of Larry. He has a lazy streak about him so he doesn’t want to do the daily exercised to maintain muscle strength and knowledge. So, he is regressing and beginning to not be able to assist us as much. Which is so frustrating. Here we are in the odd place of being the kids taking care of the parent and the parent is pretty much like a toddler, except, you feel horrible for treating him like that because, well, he is your dad. It’s the strangest position to be in. 

    I think I have covered the basics in the 10 page intro. I don’t get much interaction. Larry like to be totally alone. It makes him happy. My husband is gone during the day. So, it’s mostly just me by myself all day. We all three live in a new city. No real friends yet because as soon as we moved here, all this happened and our freedom was completely taken away from us, so the ability to make friends is very limited. 

    I am looking forward to finding the other areas where I can do some venting.

    Make it a great day!

    JN

  • #41152 Reply
    Profile photo of Tamaraidic0501
    Tamaraidic0501
    Participant

    Hi, I’m new here and just wanted to introduce myself.  I’m a paid professional caregiver/MA in a memory care unit of a residential care facility. I absolutely love every moment of my job…the challenges, those really beautiful moments that a resident just warms my heart (which is often), those scary moments when a resident is ill, and even the times spent with a grieving family…all of it makes my job more than a “just a job”. I’m hoping to learn from other caregivers (professional or family; after all, learning is an ongoing process). 

  • #41197 Reply
    Profile photo of lesleyjs
    lesleyjs
    Participant

    Hi, I’m Lesley from MA. My wife was diagnosed with Stage IV Lung Cancer with mets to the brain five years ago. She is a walking miracle. I moved from CA to MA 2.5 years ago. She moved in with me just over a year ago from NY. We married this past October. It is challenging to make friends here. We struggle with when or if to tell people about her diagnosis. It makes planning difficult. Some days she just doesn’t have the energy to do anything. She had brain surgery 9 weeks ago. That was the first major event since she moved in with me. I had never been so exhausted in my life. She is fine. Everything went well. But all the chemicals put in her system aggravated the side effects of the Tarceva she takes on a daily basis. Recovery has been taking much longer than we expected. Basically life with her is doing what is necessary for her to maintain a cancer-free condition. We call this NED: No Evidence of Disease. No cure. No remission. Just NED. We never know how long NED will last. I try to live in the moment, one day at a time. Keeping my heart open to let her all the way in as much as possible. We make plans so we have things to look forward to. And in the back of my mind is always the fear that we won’t be able to complete those plans. I call it falling into the pit. I try not to stay in the pit very long. I find that unless you are in this world, you don’t get it. I don’t have much of a support system, so I thought I’d see if this group could be helpful. I also write a blog to get out what is inside. I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious.

    Looking forward to hearing your stories.
    Lesley

  • #42496 Reply
    Profile photo of teresa
    teresa

    Greetings

    My name is Teresa and I’ve been a caregiver to my spouse since 2007. My spouse is a disabled veteran who suffered two traumatic brain injuries while he was deployed. We have three children living at home with us (10, 14, 22).

  • #45746 Reply

    Ron

    Hi everyone,

    I’m new here, but not new to caring for my wife. We have been married for 29 great years even though she has needed care of varying degrees for the last 9.

    In 2007 she suffered a”grand mal” seizure. After numerous tests, she was diagnosed with epilepsy. Since then, other diseases/disorders have been diagnosed; fibromyalgia, sjogrens syndrome, transverse myelitis, IBS, and most recently a small blockage of one of the smaller arteries near the top of the heart. None of these are a “death sentence”. They are all “life sentences”

    I read the stories here and the challenges my wife and I face seem so trivial to those of you caring for cancer patients or for those whom have suffered various forms brain injury. My problems seem so small relatively speaking. I’m lucky I guess, my wife can still do alot on her own, just not everything she used to do.

    The biggest challenge I have faced is the loneliness of caregiving. “How’s your wife doing” drives me nuts. They never ask how I’m doing. My family, apart from my two grown daughters, have deserted us. Friends seem to disappear as the focus of my life has shifted to ensuring my wife’s healthcare needs are met. (Nothing says “I love you” like inserting a suppository into your spouse’s rectum)

    I miss the times I spent with my pals, golfing in particular. That said, I have found some new friends on the same “caregiving” journey as me. It’s funny how different people come into your life during the season you need them most.

    My faith inGod has also been challenged during this time. Why have’nt our prayers been answered? We are both believers but it’s so hard to fethom that a life of illness, pain and suffering is what God’s plan for my wife is. I just don’t understand..

    I stumbled on this site quite by accident, but on browsing through the articles and forum posts realized it may not have been an accident at all.

    You are all super heroes in my eyes!

    • #46749 Reply

      Sam at Wellist

      Hi everybody,
      I want to let you know how much it warmed my heart to be welcomed so openly to this community. I’ve had a number of people close to me affected by and lost to cancer. This, in fact, was my main motivation for joining Wellist, which is a free resource for people affected by cancer and their caregivers. Being able to dedicate my professional life to helping others has really helped me keep things in perspective.

      I wanted to let y’all know that Wellist is offering a free web clinic for caregivers this Friday. In it, a Harvard Doctor and an experienced family caregiver will walk through how to master important basics like finding helpful resources, staying on top of important paperwork, and tips to care for yourself as well.

      There’s also going to be a Q&A session where you can ask them any questions you may have.

      The link is available here (http://bitly.com/ConfidentCaregiving) if you’re interested.

      I’m posting this with the greatest respect for this group and it’s members and with the hope that it can help ease a bit of the stress that can be associated with caring for a loved one.

  • #47118 Reply
    Profile photo of Cynthia
    Cynthia
    Participant

    Hello Everyone, my name is Cynthia and I am a 60 year old single Mom caring for my 30 year daughter. She suffered a 5 hour status seizure at the age of 3 and it left her with multiple disabilities: epilepsy, autism, severe behavior, intellectual delays and severe OCD. Despite all of this in her mid twenties she found volunteer work, two part time jobs and belonged to two recreational leagues. She had interests and enjoyments. She could be home independently for short periods, make her own food, follow instructions and keep herself safe. She was realizing her dreams and making the best of what she had. She was happy and smiling, smiling, smiling. She has the most beautiful smile.

    But two years ago on a Saturday, for no particular reason and without any warning, voices started screaming in her head. They were telling her scary things like “Today is the day you are going to die” and or commanding her to “GET OUT OF THE HO– USE”. The voices were coming from inside closets, behind her in the walls, hiding under the clothes in her drawers. The eventual diagnosis is “psychosis of epilepsy”, a schizophrenia-like psychosis originating in that dysfunctional epileptic place in her brain. This has caused her anxiety and OCD to EXPLODE. Sometimes she will just randomly leave the house because the voices told her something. Sometimes she will want to go somewhere and be crippled by anxiety and have to go back immediately. She has lost her ability to communicate with the right words. She talks in strange codes and we have to guess at what she wants. She talks rapid-fire and continuously for endless hours. It’s just stream of consciousness words strung together that makes no sense. She has lost interest in her hobbies, had to give up her jobs and leagues, friends and activities. She has lost all independence and connection to people. She can no longer tend to her own needs and needs help with every aspect of life. She can not be left alone at all. The worst thing is that she has completely lost her smile and our strong connection is gone. She jumps away if I try to hug her now. No more snuggles. 🙁

    The caregiving journey has morphed several times in my daughter’s life. I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I have to excuse myself from social functions (who wants to talk to me anyway, my life is depressing) because I don’t have that kind of respite available to me. I am told I get respite but I “CHOOSE to use it for work” (?)

    Who would understand what I do? I don’t talk about it at work and people think I am a frivolous jerk because my hours are spotty and inconsistent. I don’t want to use it as an excuse so I just work harder to keep up and meet my commitments. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired.

    I sometimes rage inside about feeling like I live somehow (unfairly) condemned to solitary confinement, sentenced to grueling manual labor, no hope, no parole, no end term in the sentence except death. Some days I am excited by the thought of dying because at least it will end. What a relief that will be… then I get back to work because my daughter is not better and there MUST be something left to try.

    I hear about taking care of myself and, sorry but blah, blah, blah. When you are in a constant fight to survive, who has the time or resources to make that happen? I cannot shop or get a haircut or get to a doctors appointment of my own because when I am not earning money at the paid job I am on constant duty with the unpaid job. So I shop online and wear whatever shapeless clothes that I can have delivered to my home and have learned to cut my own hair (badly) with YouTube videos. I don’t visit doctors so maybe I am secretly hoping to just drop dead one day? I can’t take a day off when I am sick because I can’t afford to lose the day’s pay and there is nowhere to go and lie down. If I am home the staff leaves and I have to take care of my daughter while I’m sick anyway.

    Anyway, if I haven’t bored everyone and you have made it this far into my rant, end of whine. Just talking about it makes me want to smack myself and that’s why I don’t share this stuff with the general public. But there you have it, one should let the ugly truth out somewhere and that’s why I am here. I need to ditch this stuff, find some graceful way to survive and still help my daughter as much as I can.

    I am hoping to find ideas on this site. Something I can realistically achieve given the constraints I face. A glimmer of hope? Something human to brighten my day? I dunno, something better that what I can do on my own would be AWESOME.

    Thanks for listening!

  • #47195 Reply
    Profile photo of Robert
    Robert
    Participant

    I am a 79 year old male was taking care of my 85 year old partner of 37 years at home until April 12, 2016 she had urine retention so she was admitted to HCMC then to a nursing home i am now her main health care person as i am her POA,HEALTH CARE PROXY AND SOCIAL SECURITY REPRESENTATIVE PAYEE.I want to learn all i can about care giving here so when Virginia comes home (she has dementia and delirium and deep vein venous insufficiency and is in a wheel chair for 45 days now). I can care for her best i can also for support for myself.
    Robert

  • #47666 Reply
    Profile photo of Sylvia
    Sylvia
    Participant

    Hi I am new to this community. I have been looking for something that can give me comfort at times and I happened to find this site by mistake. I really do hope at times when I am down that this place can help me. Let me see; I will try to tell you a little about myself. I retired from my job 3 years ago to enjoy spending time with my mom and my husband. My husband is the one that I am a care giver to. My mom is fine. She lives in her own house and still drives. My husband was crushed between 2 trucks 17 years ago on the job. He spent 5 months in the hospital. His trauma doctor gave him up, but I never did. I told the doctor that there was a greater physician than he was and that is the Almighty God! Well, my husband came home and was doing pretty well until about 4 years ago. He had his first stroke and in the last year he has had two more. He has had other physical problems and have not been properly diagnosed as of yet. He needs assistance getting dressed and getting in and out of the automobile. I have also had to buy medical assistant equipment just to help make things a little easier on him and myself. Me and my husband were very young when his accident happened 17 years ago. He was in his early 40s and I was in my late 30s. I must say our lives have really been drastically changed. It truly have not been easy. It has taken a toll on my health also. I think people tend to forget about the care givers. I am having back and shoulder problems now from assisting my husband. I may have to have shoulder surgery, because I have torn some tissue in one of my shoulder just from loading and unloading his heavy walker and helping him. I pray for my husband to have a full recovery, but so far that have not happened. I try not to give up faith and hope. After all; that is what gets me through each day.

    When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. He is my soul mate and I love him.

    I enjoy singing. I have been singing gospel music ever since I was about 4 years old. I sing in the choir at my church and I also sing solos. I have sung at festivals, assisted living places and other churches. Me and my husband attend a church and we love our church family. As a matter of fact they love us so much they built a handicap ramp for my husband to use. I also enjoy making jewelry and crafts. I help teach the youth at my church. I love to laugh and have fun. I also enjoy spending time with my mom. Like I said; when my husband got hurt our lives changed drastically. I look at life in a whole different way. Life is too short and too precious not to enjoy it as much as you can. I guess that is about it about me. I look forward to talking to people on here and hopefully making new friends.

  • #50481 Reply
    Profile photo of Melissa
    Melissa
    Participant

    Thanks so much Adrienne! I am new to this space and so excited to have found yall. I am the primary caregiver to my 95 year old grandmother and have been for about 10-12 years. At the beginning she was pretty self sufficient and my husband and I just moved across the street when my grandpa died just in case she needed us. About 5-6 years ago she fell and broke her hip. I don’t know what drugs they gave her but my grandma never quite came back. This has been a long hard journey since then. I have recently quit working because she pretty much needs me all the time. She has a-fib and chf but otherwise is pretty healthy in body. In mind, not so much. Fortunately she is not very mobile so I don’t have to worry about her wandering off but it is still tough at times. My friends have kind of dropped by the wayside because of my inability to do the things I used to and my family support is pretty non-existent except for my mother who comes every few months and stays for about 10 days to give me a break. My husband is a long distance truckdriver so most nights after I tuck her in I am pretty much alone. I am very excited to find yall and all of the different forums and I am soooooo grateful for yall!

  • #50714 Reply
    Profile photo of lrg514@hotmail.com
    Lois

    I’m Lois and have been a caregiver for my husband for at least the past decade. He is a kidney recipient (my daughter was his donor), and while his numbers are good, the anti-rejection meds are really hard on him, both mentally and physically. Recently, this has resulted in some angry behavior aimed at me and I’m with a therapist and psychiatrist to help me cope. Medicare has given us continuing problems about paying for his anti-rejection meds. I spent almost six weeks fighting them, and we finally gave up and are paying out of pocket. It’s a very tough road, this categorizing thing.

    • #50726 Reply
      Profile photo of Sylvia
      Sylvia

      Hi Lois,
      I can surely sympathize with you. It is very hard to care for someone. It does take a toll on you physically and mentally. I was so frustrated last week with my husband. At times, I see that he really can do better and more for himself. Sometimes, I think he does not care how hard it can be on me, but then I think about him being in the condition he is in and wonder about how would I be if I was in his shoes. All I have to say to you is lean on your true friends and take deep breaths. It’s not easy for sure and at times it just seems impossible. Anytime you want to talk, please let me know and I will be glad to help. Take care and God Bless!

  • #50744 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg
    Participant

    Melissa – You are so welcome, and I am so glad you found us. You’ve been at this for a long time and you sound pretty good. It is a hard journey and the most common complaint you’ll hear from caregivers is that they’re pretty isolated. Have you tried reaching out to your friends lately? I mean, if you’re alone in the evenings, I understand that you have to stay with your grandmother, but maybe friends could come by and visit. Keep it simple. Tea and cookies, or something like that. Sometimes, friends just need to hear from you to get things off the ground.
    Anyway – keep in touch.

  • #50834 Reply
    Profile photo of Momlife02
    Momlife02
    Participant

    Hello,
    I’m an only child caregiver to my elderly mother. She has epilepsy and no drivers license, and she lives alone. I’m very thankful that she is still pretty independent that she remembers to take her own medicine, bathe and dress herself, prepare small meals, and do light housework. I’m still in charge of paying all her bills, scheduling and taking her to Dr appts, calling in medicine refills and picking up medicine, buying groceries, and hair appts. My father is passed away, and I have no siblings to help. My husband helps sometimes, but he still has to work full time, so I’m mostly on my own. I have no social life because of being a caregiver. I worry about my mother getting worse and the future of caring for her.

    • #51028 Reply
      Profile photo of Paul
      Paul
      Moderator

      Welcome Mom.. your story sounds like that of so many other caregivers. But you’re in the right place here.. we’ve got to support each other for sure. I also help from a distance in providing help to an epileptic friend. His family is elderly and distant (we’re in NYC and his family is in rural Maine). So I know first hand, some of what you’re dealing with. Like ALZ and plenty of other diseases, epilepsy is SO unpredictable. And yeah.. planning for the future is scary and troubling and looks like the beginning of a dark tunnel.. Together we can support each other and get thru the darkness. Hope to see you on the forums and in the discussions going forward. Thanks for sharing.

  • #50988 Reply

    jessavramov
    Participant

    Hello! My name is Jessica Avramov. I am 39 years old. My caregiving journey began in March of 2011 when my precious grandmother (95 years old at that time) fell and broke her hip. I had quit my job in 2010, was in school full time and raising my daughter, so I decided to move in with her to grant her the only request she ever made, which was to remain at home, rather than in a nursing facility. She was more than a typical grandmother to me, for I was raised by her from the age of 19 months. The first few months at home with her were demanding and exhausting. She didn’t sleep much and was having a hard time adjusting from being so independent. She didn’t want to give me the control that she so enjoyed. But, after a few months, we both created a smooth routine, and we were making it. I was here night and day for her, and very rarely had any help or breaks. My life was totally changed. I had given up the freedom of coming and going as I wanted, having time to study during the day, and plan for my wedding. By the way, I got married in July of 2011. My husband was living in PA, and wasn’t able to move in with us in TN until December. Once he did, we had anything but an ordinary newlywed life. To this day, we have had maybe five dates alone.
    Once my husband moved in, things seemed to relax a bit for me. I had some support for myself and my daughter, and my grandmother adored him. Things were going great. Then, the next big thing happened.
    In June of 2013, my dad suffered a massive stroke. I instantly knew that if he were to survive this, there was no way he was going to a nursing home. So, I decided to go with him to therapy at his rehabilitation daily for 8 weeks, then bring him home. He came home with me in a wheelchair, paralyzed on his entire left side from the stroke. It is honestly a miracle that he survived.
    When we came home that August, things didn’t automatically go back into a routine. Now we had two patients, two different sets of needs, and a teenage daughter that was changing and needing more and more attention. After several months, we did find our way. Let me tell you, we had many sleepless nights, tears, laughs, and proud moments. It is so overwhelming to be a caregiver.
    In April 2014, I learned I was pregnant! This was a blessing, but I was honestly scared. I wondered how I could manage taking care of another person, and if I was even capable. The next month, my grandmother fell ill. She was rushed to the hospital via ambulance because I thought she was having a heart attack. After various tests, we learned she had blood clots in her lungs. The next few weeks were touch and go. She was 98 years old, so this wasn’t an easy thing for her to get through. But, she did! We brought her back home. The next several months were so difficult! As the little life was growing inside of my belly, her life as fading. The one that always took care of me… I was in such a strange place. I was trying to be happy, yet so much of me was devastated while watching her decline. And decline is what she did.
    On December 1, 2014, my sweet granny went to be with Jesus. She was at home, with me, my daddy (her son), and my daughter. My husband wasn’t here, due to his mother being ill in Czech Republic. I was so sad, so scared, so torn. This was all taking place 18 days prior to the birth of my son. It is still such a mystery to me why the events were timed this way.
    Losing my grandmother was hard, but I honestly had so much on my plate that I didn’t really get to grieve properly. My daddy still had to have full time care, and I brought a new child into the world. So, I cried when I could, prayed a lot, and thought about her daily.
    Things seemed to be fairly smooth with my sweet dad for some time. He enjoyed the baby, as the baby was such a blessing to us all. But, we started noticing some changes in him in the summer of 2015. So, we began following up with his doctors. In October 2015, we went to his cardiologist for routine tests and somewhat got answers for the changes. He was told his ejection fraction was only 15% and his BNP (marker for CHF) was nearing 5,000. This explained the fatigue, weakness, and even some shortness of breath and wheezing. We discussed what options we had, and his cardiologist suggested that he have a heart cath to check for possible blockages and see if that could improve the numbers. So, we prayed over it, discussed it, and finally my daddy said he wanted to try the procedure. On February 11, 2016, he had the heart cath. He did, in fact, have blockages, which were corrected with heart stints. But, the test was so hard on his body. We went home the next evening, and he was too weak to stand with assistance. It was like his stroke had just happened again! Sadly, he became weaker and weaker. My daddy never had the strength to get out of bed again. It was the hardest thing I have ever witnessed to see my strong daddy declining…and there was not one thing I could do this time to fix things! My heart was ripped out every day. The two to three weeks following the procedure were just torture on him, and us. We talked with his doctors and they all agreed that the CHF was irreversible, and that hospice care would be our best option. These were the toughest words I would swallow. But, it turned out to be the best choice, for we had the most amazing nurse (lifetime friend), that cared for us all! My daddy suffered more than I ever expected, and so quickly began fading, at only 75 years old.
    On March 30, 2016, my daddy went to be with Jesus and my sweet granny in heaven. I was holding his hand and my head was on his chest when he left us. I actually heard his heart stop beating. This was an unexplainable event that changed me forever. I loved my daddy more than words, and losing him has proven to be the greatest loss I have ever experienced.
    It is still so fresh… my life changed in an instant. I went from giving my everything, 24 hours a day, 7 days a week. Now, they are both gone. Nothing can prepare you for this void! It is wonderful that I have my husband and children, but that loss is still so great. There hasn’t been one day that I haven’t cried uncontrollably, prayed and cried out to God to please give me peace (which He has), and to help me move on. It is very hard. My whole family has been changed, forever.
    Although it has been hard, demanding, life changing, and emotional, there is nothing I would change! I got to be with the two people I loved MOST in this world until their last breath! That is a blessing! I got to help them and care for them the way they always cared for me.
    If you are caregiving and feel like throwing up your hands because it is hard, hold on!! It is only temporary. They will be gone, and then all you will have are those memories. I remember days I felt like I couldn’t do it, but God granted me the strength and courage to keep on. Thank you for listening to a glimpse of my story… There is honestly no way to share the details of caregiving. God bless!

    Jessica

    • #51045 Reply
      Profile photo of Paul
      Paul
      Moderator

      Jessica… WOW.. what a journey. And yes, now you are in a very different place.. but much closer to understanding the circle of life more intimately than many of us can ever imagine.

      On your last point though, that there’s no way to share the details of caregiving, I must challenge this. Because your story resonates with me, and because I feel the power of empathy is one of our special gifts in human life. And I have a pretty strong sense that your values and commitment will shine through to your own children, and in that are the most precious pieces of what caregiving is all about.

      Now, back to taking care of yourself and your thriving family.. yes, different “patients” with different needs. And now coming to The Caregiver Space, joining a community of caregivers is another great way to show your values, your fortitude and to show your love.

      Keep on keeping on! and Welcome!

  • #51055 Reply

    Elizabeth

    Wow, Melissa, that’s a long time! My dad did pretty well on his own up until 6 months ago when he had a stroke. For his age (89) I’m amazed he pulled through so well, but it’s still a tough road.

  • #52326 Reply
    Profile photo of Firewoman
    Firewoman
    Participant

    Hi. My name is Angie. I take care of my mother who has had 3strokes that we know of. I must say, until you actually become a caregiver, you truly do not realize what this job entails. I do have a question, so if someone could guide me on the correct place to go, I would greatly appreciate it. I have a question regarding compensation….I should have been receiving for several months now but just a few weeks ago I found out that MY paperwork was never received. To make matters worse, mother is going into long term care tomorrow….I feel many mixed emotions right now. Thanks in advance.

  • #52328 Reply
    Profile photo of Firewoman
    Firewoman
    Participant

    Can anyone PLEASE help me or guide me in the right direction? They are taking my mother tomorrow to a nursing home & I am being left with no money at all to pay upcoming rent, bills, etc. PLEASE, I am so stressed & with this latest of her leaving home that fast…..I am at the breaking point. Thx!

  • #52446 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg
    Participant

    Angie –

    There’s no easy answer for your questions—first more questions. Most states do not compensate family caregivers. You say you should have been receiving it—from what group? Does your mother get Medicare or Medicaid? How long have you been taking care of her? Do you get compensated from your work for family leave?

    There is a large stroke support community. We can help you with emotional support, but if you have stroke specific questions, you should contact http://support.stroke.org/site/PageServer?pagename=strokesmartsignup&gclid=COfVlpL72s4CFcoehgod138DHA. You’ll be able to get more answers there.

    I understand how overwhelming being thrust into a caregiving position can be. I don’t know if you have been on time with the rent and bills until now. You will find people far more caring and understanding than you expect if you explain what’s going on. If you are eligible for compensation, you just have to be firm about getting it. Don’t lose your temper in desperation. That can happen when you’re at the breaking point. Anger makes it harder for people to hear what you’re saying, so try and keep cool.

    Please, let me know who you sent paperwork to regarding compensation. Maybe we can point you in the right direction. If not us, maybe we can send you to someone who can.

    Hugs – Adrienne

  • #52463 Reply
    Profile photo of Max42
    Max42
    Participant

    Hello all. I am max. I’m new around here. My wife has myotonic dystrophy. I am the caregiver. We have a daughter together who is sitting on a horrible 50/50 chance of having symptoms. Pleased to make everyone’s acquaintance

    • #52518 Reply
      Profile photo of Paul
      Paul
      Moderator

      Hey Max,

      Glad you found us.. and hopefully our shared experiences will help make the path more bearable.

      The caregiver support I give my friend here in NYC is making me an expert about epilepsy… but I had to web search “Myotonic” to get an understanding. Few of us have medical expertise, so the learning curve is pretty steep on more than a few fronts.

      Keep engaged here, it’s a quick jolt of support when you need it.

      Paul

    • #52583 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Max –

      All I can say is welcome. I too had to Google myotonic dystrophy, and I can see that your plate is piled high with problems.

      I hope that you continue to come to The Caregiver Space because whether or not we share disease specific information that can help you, we have caregiving in common and can support you that way.

      Sending you many hugs – Adrienne

  • #52513 Reply
    Profile photo of Ashley Look
    Ashley Look
    Participant

    Hi!
    I am Ashley and I am pretty new to the Caregiver Space. I just had an article that posted here yesterday on “Mortality, Loss and Finding Peace” but realized I never introduced myself! So, I am Ashley, caregiver, my mom just passed, and the beat goes on… It’s kinda hard to summarize an introduction here at this point so, I’m skipping it and just saying hi. Hi!
    Ashley

    • #52515 Reply
      Profile photo of Paul
      Paul
      Moderator

      Welcome Ashley,

      Remember, you can always come back to fill in details as you get in the swing of things. Most importantly is knowing that you’re not alone. And looking forward to reading more of your thoughtful contributions.

      Paul

    • #52528 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Ashley –

      I just read your article and I’m so glad you’ve posted a short and sweet introduction. The post says volumes, of course.

      My condolences on the loss of your mother. The pain of “a slow goodbye” has been replaced by grieving the actual passing. Strange. Anticipatory grief is always a part of a long goodbye, but grieving the loss of the person’s being, memory, recognition, cognitive behavior, etc. is frequently much more painful for the caregiver of an Alzheimer’s and dementia patient than the actual physical loss. But it doesn’t lessen the feelings a real ending brings up.

      I’m happy you’re with us and look forward to your writing pieces for us about “After Caregiving,” which is where I am and where so many of our members are headed. It’s very important to address these issues.

      Thanks again. Hugs to you,
      Adrienne

  • #52807 Reply

    Paul Strandquist

    My wife Jojo had PSP for 6 years before she passed away! I have so much love, respect and prayers for any and all caregivers no matter how hard the burden.
    As I look back I honestly have no idea how I took care of her, went to work and took on all the tasks that Jojo was so good at that I stunk at;
    ie: paying bills; You just do it and do the best you can: It is easy for me to say this now; But please be kind to yourself, do not beat yourself up or feel guilty; We all go to High school, college maybe Medical School , law school for amazing training. Caregivers get On The Job training and thankfully have these resources to help with support; My prayers and strength and love go to all current caregivers.

    • #54107 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Paul –

      Welcome. I thought I’d written you already, but the site is undergoing some fine tuning and I must have messed up somehow.

      You had a very tough road to hoe. PSP is such a difficult disease to watch your loved one go through. You sound like you were a champ though. You understand you do the best you can. I suppose it is odd to say that in hindsight, but getting the gist of being kind to yourself takes a long time for some people and I’m glad you mentioned that in your introduction.

      We will be restarting our support group for “After Caregiving” very shortly and I want you to look out for it. Chatting online with people who’ve been through what you have, more or less, is great for getting through the emotional rough patches when your job is, sadly, done.

      I look forward to reading future posts from you. Keep us posted. Writing is one of the best ways to unload what we’re feeling. A way to put it out there and stop carrying it around.

      Hugs to you, Adrienne

  • #54375 Reply
    Profile photo of
    Anonymous

    Hi there Caregivers!

    I live alone in Oklahoma with a simple schizophrenic roomie. We are not related nor plan to be. I find this an exceedingly lonely scary situation because there seems to be no one here but me. My roomie can’t discuss stuff with me on any level but the most concrete ie: when he is leaving for work, how the car is running this week etc. When it comes to wondering about who we are or why we do anything (or the what or why of anything else) I am alone. Spiritual issues lead to massive delusionism. He is apathetic and lies about being interested in doing stuff…just to get me to shut up. He cuts me off at every pass when I bring up stuff to discuss with him. I feel massively disappeared much of the time..or most. I have not much of an outside life and really can’t because this guy is so needy. No one else cares about him and no one calls, visits or invites us (or me) out. Pretty much no one cares about me either. So that’s why I joined this board. The guy is now recovering from congestive heart failure but I can’t give him soup or juice because he is convinced that will tip his total CC’s of liquid over the 2 quarts mark. Don’t ask me how he devised this delusion, I don’t know!! He is also positive I will feed him enough sodium to hurt him, even though his visiting nurse has been trying to reassure him that obsessing on this stuff is useless and that I really can be trusted. Problem is he doesn’t know how to take care of himself AT ALL and that includes his surroundings or me either. That issue is worse than the delusions.

    And so what if anything happens to me? What if I need some time off? What if I need to LEAVE? No answers, no relatives, friends or caretakers or respite people in the wings. In many ways I have become a slave with a roof, and although I’ve had worse jobs, this is still a HUGE issue. Any help, input or advice or FRIENDSHIP would be a soul-saver for me. Thanks for anyone who has read this intro from me. I’ll try to help anyone else anyway I can…

  • #54499 Reply
    Profile photo of Deb Wilcox
    Deb Wilcox
    Participant

    Good morning from beautiful cool New Hampshire! I am caring for my husband who was diagnosed with Alzheimer’s 6 years ago. He is now 75 and I am 65. I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships.

    My husband is now into moderate Alzheimer’s and it’s hard. We have had a good loving caring marriage for 33 years and he is still aware of how much I do for him and for us. And he appreciates it so and tells me! But day to day is harder and harder. He is often in denial of what he can and can’t do and what his condition really is. Common I know. He accomplishes very little around the house and yard, but thinks he will and is very resistant to allowing family and friends to help us.

    Having said that however, we have incredible family and friends! They do help us immensely and are always available to listen and help or whatever we need. I’ve had to learn to ASK for help! They are thrilled to do things for us and I have to swallow some pride! I was always the one who did for others!

    Right now my husband’s doctors have all recommended some kind of Alzheimer’s day program for him, at least a couple of days a week for the social aspects. He is a very social person still and needs the stimulation. And everyone says I need the break. And I do! But we tried a day program a few months ago and he hated it. Lasted only one hour. Even if I could find another one it’s clear that he wouldn’t go. He remembers nothing day to day, but that sticks in his mind!

    I try to go to a local Alzheimer’s caregivers support group, but it’s not really helpful. It’s a mix of children caring for aged parents, usually in nursing homes, and elderly wives with husbands in nursing homes. Their issues aren’t mine.

    Some days our life looks like any ordinary retired couple, but underneath it’s very different and many days are a bit of a nightmare.

    Sorry that’s been a long introduction, but I’m glad I finally wrote it! I have other issues that the “old” ladies in the local support group certainly don’t talk about – like sex! And friendships outside marriage to support the caregiver.

    Thank you for providing this space for all of us!

    • #54600 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Deb –

      Welcome. I’m glad you found us and glad you unloaded in your introduction. I’m 68 and I do get what your intimacy problems are. Not everyone our age cares any more, but when it comes to sex in a caregiving relationship, not everyone wants to discuss it. I’m so glad you felt that you could mention that concern in passing——it’s not a little thing.

      You talk about friendships outside the marriage. If you want to go into that further, I’d be happy to correspond with you on that issue.

      I founded this space 5 years ago, after my husband passed away, losing a six year battle with lung cancer. I was fortunate. Through operations, chemo, radiation and all sorts of pain meds, he never lost his sex drive. Our relationship grew stronger and stronger over the years he was ill. We were together 26 years before we married and today would have been our 11th anniversary.

      If you’d like to correspond with me, my email is adrienne@thecaregiverspace.org. This would ensure complete privacy. However, discussing your issues in the forums might prove beneficial to our many members.

      Hugs,
      Adrienne

  • #54523 Reply
    Profile photo of Gina
    Gina

    Hi everyone,
    My name is Gina, I am a retired RN, 66 years old, who is the caregiver for my husband Gary who I have been married to for 27 years. He is 72 and it has been 20 months since his diagnosis of Stage IV adenocarcinoma of the lung with bone mets. He has been thru a lot, and after 4-5 different treatments, chemo, radiation, oral chemo and 3 kyphoplastys due to vertebral fractures, we are now I feel at our last ditch effort to extend his life with a new drug for his cancer, Opdivo. If there is anyone out there who has been on the drug I would appreciate any feedback you can give me. I am fearful due to the newness as well as the horrific side effects we have read about, not to mention the expense, which is 150,000.00 for the initial treatment, and 14,ooo for the bimonthly treatments. I try to stay strong and busy doing the YMCA 2-3 times a week, painting classes, eating right , not drinking too much, but I continue to get sick with colds, strept throat, painful joints, etc. which I feel is due to the stress of it all.I think I am a strong person, but then I also feel that I internalize a lot that I shouldn’t. I look forward to hearing from each of you who have been on this journey.

    • #54601 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Gina –

      Although my husband, Steve, was never on the medication you’re asking about, we have husbands with lung cancer in common. It was his illness and loss that prompted me to found this site.

      I’m delighted to hear that you’re taking care of yourself——I’m sure you know that many caregivers fail to care for themselves while the care for their carees.

      I know how it feels to be told you’ve basically come to the end of your options. When that happened to us, we left the hospital and went home to cry together. We grew closer and closer throughout his years of surgeries, chemo, radiation and pain meds.

      Please check out our online chats for spouses led by Bob Harrison and take a look at some of his posts. He lost his wife to cancer and has made caring for caregivers his mission. We’re very lucky to have him. His pages are “Because of Annie.”

      Keep in touch. Keep writing——it’s another part of self-care.

      Hugs to you
      Adrienne

  • #55018 Reply

    Laurie

    Hi, I’m Laurie. I have been taking care of my son since his birth 25 years ago. He stroked 3 time while inside me. He has severe brain damage, uncontrollable seizures,and severe retardation. Luckily, he is very loving ( most of the time). We have been able to do alot of rewiring thru constant repetition. I feel my son would grow so much intellectually, if allowed to live independantly, with 24/7 staff. I think as a parent, I’m to close. Easy to help him. Easy to not have the patience anymore. I’m 55. Anthony is 5′ 10” 210 lbs!! I’m 5’4″ 150. He is getting harder to care for physically. I have tried to treat his seizures with pot, and continue to look for the right dosage for him. I have a great deal of guilt because I dont want to take care of him anymore. I feel selfish. Thing is, I think he would like to live on his own also. The father wont allow it. Feelin stuck Peace everyone

    • #55317 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Laurie –

      I can’t begin to imagine what you’re going through. I have no children except the strays that I’ve taken under my wing over the years. I’m a natural nurturer, that’s all. But parenting and all it involves, good and bad, is something I haven’t experienced.

      I do have a cousin, now 84 years old, who has a daughter who’s mentally challenged and though she’s now in her 50’s, my cousin is still bound to be as close to her as possible. It was years ago that she had her daughter placed in a group home. She seems to have thrived there. To the best of her abilities. But my cousin’s life consists of visiting her child and not taking care of herself. It saddens me, but that’s been her choice.

      From the little bit you’ve written, it sounds like a group home with 24/7 supervision is well worth a shot. Do you have any idea how he feels about that prospect? Do you know how you’ll deal with it? Clearly, he’s become too much of an adult for you to handle. He’s still your baby and always will be. You just have to let go and not feel guilty about it.

      If you feel like writing me directly, it’s adrienne@thecaregiverspace.org. I’ll be happy to hear from you.

      Hugs – Adrienne

  • #55255 Reply
    Profile photo of Lacey
    Lacey
    Participant

    Hello, I am Lacey. I am 24 years old and engaged. I have been a caregiver in various situations since I was 18. I started fresh out of high school as a care provider in a residential home for 8 adult developmentally disabled men, ranging in functionality. Working for the same agency I transferred to a house of 5 high functioning females. I quit work to go to school for 2 years. I just reentered the workforce this year while continuing with my schooling. I presently work with a care providing agency that tends to youth DD up to eldercare clients (my oldest is almost 91). I have also started caring for my mom early this year. If I am not in class or at work, I am with my mother. She is in the early stages of dementia, but also suffers severe mental and physical disabilities. I am in the process of finding a home that is large enough for my mother to move in.

    • #55318 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Lacey –

      Welcome. For a young woman, you’ve certainly done your fair share of caregiving, but it sounds like this is the closest it’s ever gotten to home.

      It also sounds like there must be someone in your contacts who would know where you should be looking for care for your mom.

      You bring a lot of experience to your situation. Check out our articles, keep writing in the forums and when the chats get going again, join a chat. We’re going to have one for mothers and daughters——would that interest you? Also——check the calendar and see what chats we have scheduled for people caring for dementia patients——that would be very good for you.

      Keep writing. I’ll look for your notes.

      Good luck. Hugs. Adrienne

  • #55509 Reply

    Ann Campanella

    Hi. My name is Ann, and I’m the author of Motherhood: Lost and Found, a memoir about my mother’s descent into Alzheimer’s at the same time I was trying to become a mother. My mom began showing signs of her disease at the time of my first miscarriage. It was an emotional journey seeing my mother lose parts of herself and becoming her caretaker when I was hoping to begin raising my own family. During those difficult years, I so wanted to read other women’s stories to understand how they handled the loss of a parent to dementia and to hear how they survived and held onto hope. It was hard to find those kinds of stories. So, as a former magazine and newspaper editor, I wanted to share my story to help give women, who were experiencing the challenging role of caretaking, an emotional road map to follow and a literary hand to hold so they know they are not alone.
    With this in mind, I would love to share more about my book if you have a place where it would be appropriate on your site. Thank you so much for the many ways you are supporting caregivers

    • #55680 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Ann –

      I’m so glad you found us and yes, I’m sure we can find a way to share your work and experience on our site.

      If you’d email me directly at adrienne@thecaregiverspace.org, we can communicate directly and come up with a plan.

      ‘Til then, hugs,
      Adrienne

  • #55615 Reply

    John W Dudley

    I read about this experience and wanted to share it with you.

    “Toward the end of our visit—after I had read more than half the book to her—she expressed the desire to keep hearing more. Her husband, who cares for her every need, continued to read the rest of the book to her. This experience with my sister helped me to realize the value of reading such publications to elderly and infirm ones.”

    John W Dudley

    • #55678 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      John –

      Thank you so much for posting that moving and succinct paragraph. I’ve heard and read about the power of music with Alzheimer’s patients. Apparently, it’s calming and evocative and somehow cuts through the confusion.

      The fact that reading has this powerful response is a gift——something a child or spouse can do with their loved one to great affect.

      Thanks again.
      Adrienne

  • #55728 Reply
    Profile photo of Jeananne
    Jeananne
    Participant

    Hi! I am an Advanced Fellow in Geriatrics. I was the caregiver for my mom so I have traveled this journey. In addition I am a physical therapist in an acute care hospital. I work with caregivers regularly. I am currently conducting a research study about the intersection of caregivers and medical providers. We want to develop a screening tool to identify caregivers who are experiencing caregiver stress syndrome as well as to develop a program to better support caregivers in the care transition from hospital to home. We understand that often caregivers are just left out of the conversation. Let your voice be heard. Take a few minutes to complete this survey online. Pass the link on to your friends by copying and pasting it to them in an email.

    Caregiver – https://my.tonicforhealth.com/passage/survey/VmCgdjoKV7kF_1PvTdduOQ/question

  • #55835 Reply

    Alicia & Jerry
    Participant

    Hi, My name is Alicia Davis and I’m new to this group. I’m 56 years old and my Caregiver Journey began in 2010. My Beloved Husband, Jerry Alan Davis was diagnosed with a Massive Brain Tumor in Dec. 2010 which was in his Sinus Cavity & went up into his Forehead which was ALL CONNECTED!!!!! He had a 12 hr surgery to get it all!! THANK YOU JESUS!!!!!! However, two weeks later we learned it was Cancer…. He underwent 33 Radiation Treatments. Then it was in Remission for about a year or so, but then cancer came back in 2013 as Bone Cancer. It was in his low back, hips, one shoulder. We didn’t mess around and was able to get into CTCA in Newnan, GA. While there he underwent Radiation Treatments & Chemo for the first time & had a Hip Replacement. He was in Remission again for only a short while this time. Then unfortunately Bone Cancer was to rear it’s ugly head for the THIRD TIME IN 6 YEARS IN JULY, 2016. We continue “OUR BATTLE TOGETHER” knowing that “GOD’S GOT THIS!!” This is “OUR FAMILY MOTTO” which we ALL HANG ON TO!!!!!!! JERRY & I JUST CELEBRATED “OUR 18TH WEDDING ANNIVERSARY” ON SEPTEMBER 12TH, AND WE CONTINUE ON “JERRY’S JOURNEY”. We always say, “If you are unlucky enough to get Cancer, CTCA is the PLACE TO BE!!!!!!

    • #55861 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Hi Alicia –

      My goodness, you and your husband Jerry have been through the wringer. My experience was with lung cancer. In and out of remission; in and out of surgery and so many different treatments. Steve died in 2011 and it was caring for him that inspired me to found this site.

      Funny…we would have been married 11 years on September 12th. So, we share an anniversary. It is indeed a journey. Some people object to calling it that, but not me. The path has twists and turns and you have to be ready for anything. Troubled waters and uncharted territories.

      You sound like you’re doing well. I hope you find time for yourself. Keep posting. I’ll be on the lookout!

      Hugs…Adrienne

  • #55939 Reply
    Profile photo of Melissa2
    Melissa2
    Participant

    Hi. My name is Melissa. I am new here. I am desperate for support! I am the caregiver to my partner who suffers from chronic, debilitating pain, fibromyalgia, depression and anxiety. My partner and I are in our early forties and are the proud moms of 2 amazing boys, ages 12 and 7.

    There are many things that have contributed to my partner’s chronic pain. She was a sports superstar as a young child and teen and sustained many sports-related injuries which were never properly treated, if they were treated at all. She sustained major injuries in a car accident in her early 20s. She also struggles with serious neck and back injuries. A few years ago serious complications due to a kidney stone resulted in the removal of one kidney. This kidney surgery did not go as planned and resulted in severe muscle damage and severed nerves.

    All of this adds up to chronic, often debilitating pain for my partner. She relies on a daily regimen of narcotics, muscle relaxers, anti-inflammatory, antidepressant, and anti-anxiety medications function as “normal” as possible. Most of the time, she functions amazingly well given all the things she copes with on a daily basis. To most, she appears “normal” and no one would guess she lives in chronic pain.

    However, the ups and downs of her debilitating pain take their toll on me, our relationship, and our family. One harsh reality of my partner’s chronic pain is that there is no way to predict how she will feel day-to-day, hour-to-hour, or even minute-to-minute. She requires lots of sleep, since this is often her only reprieve from all the pain…..but most times the sleep she gets is not refreshing or restorative. This, as you might imagine, often causes tension and frustration since we have 2 active boys. I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years.

    As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. We work hard at “being real” about my partner’s limitations and adapting to her needs. But sometimes, it seems no matter how hard we try……I am the one who is left dealing with all the day-to-day stuff. And sometimes it feels like too much. It is hard to find others who can identify with this. I often feel guilty and ashamed for the way I feel. I know she can’t help how she feels and how her body functions. I know she does the best she can and often does more than she should so I don’t feel so overwhelmed. I know she struggles with feeling useless, hopeless and frustrated with her conditions and limitations. I know she often doesn’t let on how much pain she is really in and how hard she has to push to be an active part of daily life.

    This all takes its toll. Plans are hard to make. Last-minute changes often have to be made. I often have to pick up the loose ends and carry on no matter what. I often end up feeling alone and guilt-ridden.

    I am reaching out here for support, understanding and compassion. Thank you.

  • #55980 Reply

    Dawn Barr

    Hi All.
    My name is Dawn. I am the mom of 3 adult boys and 3 adult stepdaughters. I have twins that just turned 27. Both boys are dual diagnosis-developmental delays and severe mental health issues-they live at home. We have been through a myriad of Dr.s therapists and medications and continue to do so.
    My husband was a wonderful support to them and myself and a great guy. He passed away suddenly 6 years ago and since then I have been on my own with them.
    They are very resistant to outside help and suffer from severe social anxiety. I do have supports in place but not on a frequent basis.
    Devon has tried to kill himself on numerous occasions the last being September 19th. He really shouldn’t be here-he had been saving meds and planning for a year. The hospital said he took more than enough to die. I didn’t find him for 12 hours. The hospital released him to me after 5 days.
    I am really struggling right now. I cannot get the images of finding him out of my head, am having anxiety and nightmares. I am trying to work but if I don’t hear from him for a while I begin to panic. I wake him in the night because I have to.
    I need to find some strength to function. I have always been able to pick myself up before and I don’t know why I can’t seem to now.

    Thanks for listening.

    • #60201 Reply
      Profile photo of Kenneth
      Kenneth
      Participant

      Hi fellow warriors! My name is Ken and I have been a care-giver for at least 10 years off and on since I was 8. I am now 43 and caring for my dad (5 years now) who is in the early stages of Alzheimer’s and was a life-long acoholic. The beautiful part, he WAS a life-long alcoholic and I never thought I would be able to utter those words. He has been dry now for going on a year. This was brought about when he met his current girlfriend. I met her the same day I had to call the police after not being able to find my father for about 7 hours. I was frantic and ashamed, judged. In any case, as God (the Universe, I, etc.) saw fit her step-daughter from New Jersey called the Jacksonville Police Dept. to check in on her. She is a manic-depressive and was in an extreme manic phase for about a year and a half. Long story short, I met her and brought her into my home that same day and she has never gone back home. It was the strangest challenge and most wonderful outcome I could ever hope for. She has no children, no family here. My father desperately needed companionship I could not provide. She, once properly medicated, is one of the most, loving, gentle spirits you could imagine. Because she was a recovering alcoholic and a woman trying her best to live a life of faith she also insisted upon my number one rule: NO ALCOHOL! I could never get my Dad to quit. I literally tried everything I could think of. I say to you all…suffering is how we grow. Which direction we grow is our choice. Transform your suffering or you transmit that suffering to all around you and throughout all the universe. Know that you are made as a whole, beautiful, strong divine spirit and that your suffering is truly my own. I love you, I forgive you, I pray for your happiness and that you begin each though with gratitude and love.

      • #60397 Reply
        Profile photo of Adrienne Gruberg
        Adrienne Gruberg

        Kenneth –

        Welcome. You sure seem to have figured out how to best handle caregiving for your dad. The woman you speak of sounds like a Godsend. I have a talent for seeing diamonds in the rough and you seem to have it too. Whatever——it’s working. No alcohol and life finds a new normal that seems to be working for both parties and you.

        Now and then, higher powers come into play and bring solutions that only some people are tuned in enough to recognize. You are to be commended on taking this young woman in and recognizing that she was a gift. I am very glad for you.

        Read your comment to Cathy and hope you continue to read newcomer’s introductions and help when you can. Making someone feel welcome can work wonders. The Caregiver Space was designed to be what you made it. The more you participate, the more you have a chance to give and receive.

        Hope to read more from you in the near future.

        Hugs – Adrienne

  • #56532 Reply
    Profile photo of CathyHallow
    CathyHallow
    Participant

    I have a question. My Mom with Dementia has been living with me since Jan 10 2016.
    I have Caregivers during the day, so I can work. Mom likes both of them. Mom is getting worse and
    the minute the Caregivers leaves she starts asking me to go HOME, that she is just visiting,. Recently she is
    very combative with me and wants to fight and complain. Stating I keep her from her other kids, she insist I
    am not her daughter, that she has the other Cathy Hallow. The negative presence and meaness is just too much to take. We have tried just agreeing with her, but them she will get mad and state, There is no one at Home to go to.
    All my friends are dead, ect. So we are at a no win situation.
    Memory Care is $4000 to $6300 in Cook County and Northwest Indiana. Mom only gets $3200 a month.
    That is all she has. No savings or insurance.
    My Brother lives in Lake Wales Florida, He has checked out 3 that are in her price range, and he states they are nice
    and he will go see her 3 times a week.
    What are the thoughts out there and if anyone else has done this, about moving my Mom to Florida?
    I have always been the one that takes care of her, and she has always been difficult with me. I can never do enough
    Please help me with this

    • #60203 Reply
      Profile photo of Kenneth
      Kenneth
      Participant

      Cathy, take a long, deep breath into your lungs and close your eyes. When you exhale imagine all of the misguided judgement and self loathing others’ have taught you to identify with. This is the lie. To all things there is a season, I believe yours is upon renewal. I would suggest that perhaps you see your brothers’ desire to take the next part of your mother’s journey as a signal that you have done all Cathy can do for your mother. You have given the very most and best of who you are, whether you understand that or not. Instead of feeling guilty, if you will, transform those thoughts to gratitude for being able to serve your mother for the time you have for her continued comfort and now at the very end of this journey; you and your brother can know that she ascended in love, honor and dignity. Love yourself, forgive yourself and know that your are divine and made by the divine Creator. He is love therefore we are too. :o)

    • #60398 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Cathy –

      Welcome. I understand how tough it is to deal with mothers. I could never do enough for mine and I finally accepted it. I knew there would be no pleasing her so I stopped knocking myself out; stopped going the extra yard——she never noticed anyway.

      I was lucky. Neither one of my parents had Alzheimer’s or dementia. Mom was just plain mean. Dad was a doll and died first——my mother wore him out.

      If you have siblings willing to help you and you say your brother has found a facility that will work for your mother, I would take advantage of it. There is just so much you can do and willing siblings are hard to come by. Usually, the caregiving task falls to the daughter/s. I knew having my brother hanging around would just stir the pot and cause more problems. I was a long distance caregiver, spending about a week out of every month in Florida. My mother lived at home and had round the clock care. She had COPD.

      One thing you must not do is feel guilty. You understand you’ll never be able to do enough. You know she’s confused and argumentative. It must be terrible for her as well and I imagine her confusion makes her angry.

      You’ve done all you can. Keeping her with you would only lead to more of the same and though mom may not like the idea of being uprooted and moved near your brother, she’s not happy now. This could be a wonderful change for her. And you, of course.

      Please keep writing and visiting the site. Only good things will come of it.

      Hugs to you, Adrienne

  • #56543 Reply
    Profile photo of Keisha
    Keisha
    Participant

    Cathy why not have another sibling to help out if you can. My mom and dad both has it. Mom was sadly diagnosed with it earlier during this year. I would like to connect with you by e-mail or phone to hear your suggestions. I am having a horrible time because me and mom are closest two people on the face of this earth, if I lose her I don’t know how to deal with it at all.

  • #56544 Reply
    Profile photo of Keisha
    Keisha
    Participant

    I’m Mrs. Keisha Michelle Nleka. I am only 29 recently got married to a wonderful man, where I now am 200 miles from both my parents. My mom has been diagnosed with Alzheimer’s at only 63, my dad has it at 94. Mom has the worst of it when she has stopped taking her medicine. I will drop everything and go home to tend to mom because we are close. I was on suicide watch earlier this year because it had became so much to bear if I lost her to this horrific illness. I’m the main caregiver, but long distance that travels there when needed for emergencies now. I am currently unemployed lost my F/T Teaching role online after coming off suicide watch, currently seeking many positions to get back into my chosen professions. I converted my phd credits into a stupid master’s degree due to running out of money with no way to finish the dissertation. The university denied me the only dissertation scholarship with no explanation why. Once I obtain employment I will pay my way to earn my two doctorate degrees, one more master’s degree and one mental health certificate. I also will be able to pay for hubby’s education once he returns to get his phd. We will be celebrating our 2nd year wedding anniversary next year on June 12, 2017. We met at Capella University in our doctorate colloquiums back in December of 2014 in Orlando, FL.

  • #61209 Reply
    Profile photo of Jenny Lynne
    Jenny Lynne
    Participant

    My name is Jenny. I have been divorced for about 5 years now. My mom was always there for me. She was my constant source of support both emotionally and monetarily for most of my life. I’ve had the propensity to get tied up with men who mistreated me throughout my life. I am giving you some background on my past with my mom. She was a devout Christian, she got me into Christ and eventually I became a Christian myself at age 19. Mom had an issue with smoking. She always helped me fight a morbidly obese teen and adult life. She said, “You lose such and such and I’ll stop smoking.” I lost over 100 pounds the past 10 years and she never stopped her smoking.

    Over the years she developed congestive heart failure and always had issues with high blood pressure. The smoking made her more unhealthy over time. She had a stroke back in 2015. I had just gotten out of another one of my lecherous relationships two months prior. I agreed to live with her and help her out around the house and feed her. I did all the things she could no longer do. I fell asleep the morning of her stroke. Normally I would always stay up and check on her– the morning of her stroke I didn’t. She laid down there for at least 20 minutes before I discovered her and called 911.

    She was in the hospital before the stroke due to her heart rate racing above 200. The hospital determined that she needed a defribilator and pace maker. They put it in her that weekend, released her Monday. The next day was when she had her stroke. I blame the hospital to this day. She has aphasia (no reading comprehension, number confusion, can’t work a remote, ect). She also is paralyzed on her left side. She has changed personality and moral wise. She has the emotional makeup of a 7 year old. She is mad at God. She blames everyone for her condition but herself. She refuses to do what she can to get better because her limbs are stiff. She makes life difficult for everyone who comes in contact with her. She is but a shell of the mother I used to have. I don’t know her and refuse to know her. My mom died the morning she had the stroke as far as I feel at times, it just depends on the day you catch me and the misery she expels on all of us.

    I can’t date. I can’t go see my best friend. I can’t go outside. I can’t go anywhere. I sold my car to help pay for a caregiver that comes in to give my father respite. I stick around because I don’t trust the lady. She is just too shifty. I’ve seen shows where elderly people are taken advantage of. I just can’t let my mom be treated that way. My dad isn’t stupid, but he lets this woman take advantage sometimes. She is the person I gave my car to in exchange for her salary with us. It was the only way I could help them out. My parents have done so very much for me. I just feel like they are my lifeline and always have been. I’ve always been extremely anxious and let fears rule my life.

    Most of the time I tell my mom how angry I am at my brother. He has his own family where he lives. He never brings the kids around my mom. He never Skypes her so she can see them. Once he told me that he told my dad, “I want to have as normal life as I can because I know I’ll be in charge of mom’s care one day if something happens to dad.” His wife’s mom fell and hurt her legs. They arranged for meals a day to be delivered to their home. They haven’t done anything like that for my parents. It makes me sick to my stomach. I just quiver inside when I think of my brother. I’ve prayed and prayed and asked God to help me with my anger and frustration. Mom talks about my brother like the sun rises and sets, he’s such a good boy. I just get so tight inside that I want to spit.

    I deal with my mom’s misery, my dad’s stress levels, and my own. I feel like I’m about ready to have a nervous breakdown some days. I don’t change her diaper, can’t move her due to tendonitis. I can’t move her. Only my dad can, so that leaves him in solid responsibility of her care. I have to sit by and make her dinner and do EVERYTHING she used to do. I have a lot of responsibility on my hands so far as my dad is concerned. He takes care of mom and I take care of him and the house. I stay around the house also so he can be the one to get the care needed.. the respite time away. He gets angry too and at times we argue.. mom pushes us so far that we are at each other’s throats. I can’t hurt a fly, but since her stroke he scared me once. He got so stressed he threatened to punch me. He never takes stuff out on mommy. He tries to keep a good front for her, he just takes his frustrations out on me.

    My dad is not a bad man. He always provided for us. We always felt safe. He is just very stressed as well over mom’s condition. He is mad all the time because mom never does what she is told by the PT people. 3 agencies have been out here, insurance paid for it.. her lack of participation made them stop coming out. She then lays in her bed complaining she can’t walk. It is a never ending cycle. I told her a week ago, “Mom, it is your own fault you’re in that bed. You’re living as if you’re dead. I want no part of you anymore. You are not my mom. You are just a shell. You need to grow up and start living as if you’re alive.” She was always tough with me when it came to things.

    I’m sorry for writing a novel.. I just haven’t ever told anyone this stuff. My best friend is concerned for me. She thinks that I’m in danger of having a breakdown. I’ve always prided myself on a level head, good logic. I just can’t reason with my mom anymore and when you can’t reason with someone it is a dangerous thing. She really scares me. You can’t reason with someone because they are not right. I just can’t communicate with her anymore.

  • #62131 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg

    Welcome Jenny – I wrote you when you’d first written in but the site’s been getting work done on it and apparently, you never got it because it never posted!

    You’ve written a lot and been through a lot. I can only hope you don’t blame yourself for your mother’s stroke – you were entitled to get some sleep. You say your mom blames everything on everybody else – that’s not uncommon. You said your mother died the day she had the stroke and in many ways that’s true. She’s absolutely not the same woman. You also mention your brother and how you wish he’d bring the kids by to see your mom – I’m sure you’d also appreciate the respite.

    Your dad is bearing much of the burden, as you’ve said. This is the woman he vowed “until death us do part,” and he seems to be honoring that vow. A lot of men fail to be as good as your dad. Many even leave. But you sound, most of all, hard on yourself.

    You say you can’t date, go out or see your friends. Why? You are the only one responsible for your own happiness. You must make time for yourself or you won’t be of any use to anyone. I was in a situation with my own mother, who I had a horrible relationship with. My father had passed away before her despite the fact that she was the one with COPD for over 20 years and he was her caregiver. I was a long distance caregiver and didn’t quite know how I would handle my mom without my dad. My sister-in-law told me to just agree with everything she said. It was the best way of avoiding tension. It was the only way of not getting tangled up in all the nonsense my mother would spew.

    I felt that I had an obligation to her, as my mother, despite the fact that I didn’t like her. I too have a brother, and he was of no use in the situation either. It was easier for me to take care of her myself without his anger and issues. I learned how to keep the peace at home and how to set healthy boundaries.

    So that’s what I suggest you try and do – set up healthy boundaries. Ones you can keep and ones that allow you more freedom than you have now.

    Welcome to our community. Keep writing. And visit our Facebook Community pages. There should be one that suits you.

    Hugs – Adrienne

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