The Loneliness of the Long Term Caregiver

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This topic contains 64 replies, has 16 voices, and was last updated by  ForrestCom 3 months ago.

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  • #5750 Reply
    Profile photo of Adrienne Gruberg
    Adrienne Gruberg
    Participant

    No one prepared me for the isolation—the sheer agony of the loneliness of long term caregiving and the resulting long term depression. All of this became compounded with fears about the future, because I knew I was caring for terminally ill patients trying to extend their lives—namely my husband and his mother. I finally found help online. If I can help you, that’s what I’m here for.

  • #6317 Reply

    pat feil

    Have taken care of several people during my life. Am currently into twelve years caring for my husband who had a catastrophic stroke in early 2003. Today happens to be the fourteenth anniversary of the death of my mother whom I hospiced in the family home for a year, bed bound the last six months. My husband’s sisters will on occasion send food to him but neither has offered to help with his care but they did make a complaint to the department of aging that I was neglecting and abusing him. This held up our bringing him home from hospital over a bout of seizures due to a series of small strokes. The charges were declared foundless as I have medical evidence and witnesses who have observed my care of him over the last four bed bound years. His sisters continue to undermine my care by telling him I drug him. I do not keep them separated from him but I have escorted them out when they become problematic.Recently we became eligible for some medicaid help in the form of an aide who helps with light house work but who mostly is here to care for Alen while I leave the house to shop or run errands. Except for those hour here and there we are alone in the home, few if any phone calls, fewer visits. Fortunately I have always been more of a lone wolf but it is still sometimes daunting to have little or no conversation…and few people know how to interact with Alen who has some mild dementia. I have many concerns about the future both ours together and the prospect of mine alone when the time comes. I cannot work outside and do not know what will be possible when I am no longer tethered to his side. He needs constant care having only the use of one trembling hand.

    • #6323 Reply

      amy

      I feel your pain. Very lonely and distanced from church family and friends. My husband has a neurological disease for 31 yrs now. Last 15 have been very hard. Now my mom is did with dementia. I just pray for strength every day

  • #6318 Reply

    Angela

    I sometimes hate Friday and Saturday nights. Our car broke down. I care for my Mother alone. I do have Hospice Mon-Fri, but I have no social life right now and I feel so cooped up. I have friends who are married come and get me during the week about one time a week and take me to the store with them, but I am so tired of being alone. My boy-friend decided to pursue someone else…My other friends don’t understand the extreme isolation I feel. FB and having an online business helps. Transportation here isn’t great so I don’t know how to remedy this. I don’t want to ask people out and expect them to drive me. It just doesn’t see appropriate to do that. Any suggestions?

  • #6319 Reply

    Karen pierce

    I feel your pain, I too am alone. I take care of s lady who suffered a stroke and a heart attack. Neither one of us has any family and very few almost part time friends. I am responsible for her care and managing her large household. I have lived with her for a year now with no vacation or time off except to shop and church. I am alone in this crazy universe and am so lonely I feel it in my soul. I’m worried because I can’t outside work. I’m afraid I will never get married or have any other relationships either. Not many people understand the life of a caregiver. Thank you for your post. My prayers are with you and your husband

  • #6320 Reply

    Angela

    I am not married and have no family, and little community support. Many people here institutionalize their parents right off and don’t even attempt to care for them at home. My mother is bedridden but her mind is fine. She is not as lonely as me, but it is still hard. Thank you for your post Karen Pierce.

    • #6331 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Angela – you are a good daughter and I’m glad you’re reaching out to us. That’s suggestion number one. Keep writing. This community is growing and you will make friends here. I found the people I made friends with online while caregiving myself, were able to help me more because of their understanding of the situation. I just made a comment about involving the clergy more – we have to let them know just what we’re going through – you can’t possibly be the only caregiver in your congregation. We sometimes need to make the first stop – no matter how difficult the call. Start a journal and pour your heart out. FB is not necessarily the best place to post your innermost feelings. It’s not private. We are. You can say anything here, and the more people start to let go on the page (or the computer screen), the better things will get. I will keep you in my prayers. Adrienne, Founder of The Caregiver Space.

      • #7480 Reply

        Angela

        Tonight I am so tired. My Mom has a cough, her left back molar broke off Friday…no dentist to come. Found 2 dentists today. They want $400 just to come and pull a tooth. My Mom cant walk and wants out if her bed to walk (she can’t walk)…so i have a financial battle and emotional…my sugar is high so i have yeast infection…no transportation. No one near understands. I wonder wgat future I have alone. Alone forever…where to go when this work for my Mom is done. Where to find friends and joy. Always alone. I cant beg oeople i know to take me to a movie or include me on New Years. No local transport on holidays here. This is awful. Now i think i have a tooth ache…probably dont but so identify with my Mom. Thanks Adrienne for your comments.

      • #51054 Reply

        eileen boland

        I am burned out after caring for my son with severe schizophrenia for 14 years. I get lots of advice,kind words but no help. Sometimes I feel all alone….
        .the other day my son asked me if I wad going to bail on him also.

  • #6322 Reply

    terrie dailey

    I have worked in Long term care for 30 years as a nurse. The desolation we experience with residents whose families abandon them to our care is horrible. Family members then show up after they die for the rest of their money and their televisions. My staff has punched out at the end of shift and Remained with a dying resident. The caring for aging aunts and grandmothers always for free, and then being forgotten after they pass away. How sad for humanity that people have no compassion for the elderly and terminally ill.

    • #6332 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Terrie –
      This is Adrienne, founder of The Caregiver Space. If you have any creative ideas for how to get more people informed and involved in the caregiving experience, please feel free to contact me at adrienne@thecaregiverspace.org. I’ll be happy to hear from you and the more people we have telling us what they need, the better. You sound like you have the kind of experience that would be very valuable in our efforts.
      Thanks – A

    • #51052 Reply
      Profile photo of Lulu
      Lulu
      Participant

      agree. it’s obscene

  • #6327 Reply

    Patricia Skewes

    Your alone, and trying to care for 2 parents every need, and your own family. Your family-siblings and friends have moved on to their own things. Your stalled on care mode, and no one seems to realize, you might have need. You even begin to lose your health. Some friends seem to condemn you if you speak about hard issues and that you are having a hard time handling, what seems like almost everything… or so it seems. Friends want happy, laughter, and care free. But, your not free, and you won’t just put parents in an institution, visit once in awhile, leave and go live your life. You can lose your friends, even invites that could bring a little relief. But, they seem absorbed in their own social life, and besides your no longer fitting. You find yourself very alone… Thank God for a good spouse. Not perfect, they get tired also, but they don’t walk away in the midst of what seems overwhelming, they are faithful… it has taken several years, driving 8 hours to a specialist MD, to know the many tests needed, to begin to repair my health. My mother put into me to reach out and care for others, literally. Overseas part time, helping poor, homeless. So, how could I turn from my parents, and not care for them….I grieved quite easy, and had a peace for being there, doing the best I could. Then came my husbands parents with Alzheimer and cancer(like my parents) I had learned, and was prepared to lift up, and carry my husband thru. I knew the pit falls of personal involvement, and holding strong.

  • #6328 Reply

    Denise

    My mom is a multiple myeloma hospise patient. The family and I decided that instead of paying for s sitter to help my dad with her, that since I am not working right now due to me being laid off recently. I so enjoy having this time with mom. I wouldn’t change it. Issue is that now…my friends and more importantly even my church family has abandoned me. No one calls or visits my parents or me. My daughter who is 19 has even experienced some isolation from her friends and church youth group. I lloved my church family and my dear friends, but now I am rethinking how I feel towards them. I will never give up on my love and faith in my God, but not sure how I feel about going ng back to church. We have been going there for 14+ yrs and thought I had close relationships with many members. My husband sees me struggling and he too is experiencing the the isolation from the men of the church. He is very supportative of taking care of my mom. I love him so much. Just keep us in your prayers.

    • #6330 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Denise –
      I’m so glad you found us. Your situation is not uncommon, but that is no consolation, I’m sure. I’m going to make a suggestion — is there a way for you to talk (either by phone or in person) with your priest, pastor, minister or reverend at your church. Maybe your husband could do it, since he’s missing his church friends as well.
      The clergy, in all faiths, need to be made aware of the loneliness and isolation that caregivers experience. I think that they are very unaware of just how desperately isolating caregiving can be. We’re getting to a point where more and more members of congregations are experiencing the same thing and if the church is advised of the situation, maybe they can come up with a creative way to rectify it.
      I founded this space because of what you’re going through, above all. If you feel people in your church need to be educated about caregiving, I’d be happy to talk to the head of the congregation about forming support groups within your community, and explain to him much of what’s going on in the caregiver world. They would be a great asset in our making communities aware of the problem and the needs arising from this crisis.
      I will absolutely keep you in my prayers. Keep writing. Start a journal too – it’s a great way to let is all out. It’s a very cleansing experience.
      For the time being, I wish you and your family luck. At least you’re together.
      Adrienne

  • #6336 Reply

    Sally

    Angela – I live in the Denver area and I cannot find people who care for another as you and I do. I know they are here, but connecting and supporting each other would be an incredible boost.

    Thank you for your honest post. The loneliness and worry for what the future brings sometimes weighs me down.

    I am grateful to God that I have my health enough to do what needs to be done for my 90-year old mother. But I am afraid I continue to lack the full time and energy I need to organize and purge my house to sell so I can downsize and have more time and energy to give.

    We must continue to pray for each other.

    Sally

    • #7482 Reply

      Angela

      Thank you Sally! Praying for you too.

  • #6339 Reply

    Maria Rosal

    Thanks for sharing. It is very important for us to know that we are not alone in our struggle and there are millions like us out there doing the task nobody can, or wants or care for.

  • #6342 Reply

    SandyAshley

    Taking these comments from another WEB site:
    Care Giver Self Advocacy Messages to Live By
    Choose to take charge of your life. We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, “I choose to take on this caregiving role.” It goes a long way toward eliminating the feeling of being a victim.
    Love, honor and value yourself. Self-care isn’t a luxury. It is your right as a human being. Step back and recognize just how extraordinary you are, and remember your own good health is the very best present you can give your loved one.
    Seek, accept and at times demand
    help. Caregiving, especially at its most intense levels, is definitely more than a one-person job. ASKING FOR HELP IS A SIGN OF YOUR STRENGTH AND AN ACKNOWLEFGEMENT OF YOUR ABILITITIES AND YOUR LIMITATIONS. YOUR DESIRE TO PROVIDE THE BEST CARE.
    Stand up and be counted. Recognize that caregiving comes on top of being a parent, a child, a spouse. Honor your caregiving role and speak up for your well, deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.
    I am trying to follow this…I suggest, if you have access to this web site, then perhaps you could Google “caregiver support, then name your town/state”. Perhaps the local aging agency/or hospital has resources to tap into for advice/help.

    • #6343 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Sandy – Thank you so much for posting this. I heartily agree – asking for help is hard to do and does indeed require strength. Caregivers can find it hard to admit they can’t do everything—though sometimes it seems they have to. I know my husband didn’t want anyone else taking care of him, but standing my ground and insisting I needed help was understood as “If I don’t get some help, the quality of my caregiving will suffer.”

  • #6344 Reply
    Profile photo of Cynthia
    Cynthia
    Participant

    I have been so angry this past month. It has been a year since my husband had his stroke, and in the past month there has been a change in his stamina. It turns our he is anemic, and then we have 3 nosebleeds that have sent us to the ER each time.

    I didn’t realize I was lonely until our girls finally rallied this past week. From now until after the New Year one of them will be home every other weekend.

    I get lonely, but I also realize that the weekends go by in this odd series of routines. I am so deeply concerned that this reduction in stamina is telling me things are changing. Changes that I’m not ready to accept yet.

    Anyways… I’m glad for this place and the lives I read about.

    For all of us… know that you are not alone. There is someone else in these pages living the same life in their version of it.

  • #6357 Reply
    Profile photo of Cori Carl
    Cori Carl
    Keymaster
  • #6362 Reply
    Profile photo of Jan Rabinowitz
    Jan

    For spousal caregivers, you can find lots of support from the Well Spouse Association. We have a Forum online, and we also have a closed Facebook group: Spousal Caregivers – Well Spouse Association.

    For those caring for elderly parents, I always recommend Alzheimer’s Association support groups. Many care facilities also offer caregiver support. There are usually plenty of resources for children of elderly parents, including many, many articles online.

    If you’re in a rural area, it’s much harder. I’ve been caring for my husband with Parkinson’s for 15 years – I’m 60, he’s 63 – and I have many years of caregiving ahead! You have to care for yourself FIRST, ask for help frequently and accept it whenever it’s offered!

  • #6466 Reply

    Dave Nassaney
    Participant

    Hi, I’m Dave, Caregiver to my wife for 19 years now, she had a stroke and lost her speech, and is paralyzed on her right side. In the beginning, I too was feeling isolated and lonely, however, I quickly realized that if I don’t change something, I too may have a stroke, and then who would care for me???
    So I got on the phone and strongly reminded all the very close friends the situation with my inevitable burnout that I needed a network of friends and family to share the burden or I was not going to make it. Those who could not afford the sacrifice of their time, I asked for donations to hire help, and they gladly gave, since they felt bad they couldn’t help. A list of 10 peopl or even 5 or less could give a caregiver nice breaks to take a hot bath, go to Starbucks, go to a movie, dinner, or even a day to go on an outing with a friend, and if you are really good, (and lucky) a weekend get-away. You have to “sell it,” Let them know what is in it for them (WIIFT) Quality time with their dear friend, a partner to knit or photo book or other crafts they both enjoy, or a movie on TV or Netflix together. Good luck, have a positive attitude when you make the call, don’t use guilt, condemnation or and negative vibes. Be positive!! Dave Nassaney, Author, Radio Host to Caregivers, Speaker, Entrepreneur. DaveNass.com

    • #7374 Reply
      Profile photo of Oso  Wallman
      Oso Wallman
      Participant

      Hi Dave,
      I was my wife’s caregiver for nearly four ears. Then she got better! She’s still disabled and trying to reconstruct her new life after 30 years of accumulative disorders. When she got well enough she realized she had a long way of recovery and also got her cognitive functioning back as well as a lot of memory loss. She asked for a divorce after I had already set out to rebuild our lives in a friendlier town than DC. It wasn’t my first choice but felt i should honor her well presented request. It broke my heart -even more so and set in motion a series of health and emotional challenges for the next two years. And still does. I am rebuilding and life is slowly working its way back to same and ordinary. I still have PTSD from old issues and also all the imagery when she became very ill and all the hard moments of felling inadequate to give her solutions. I’m not sure I will ever be able to approach another relationship for fear and doubt still color my days. it’s an odd place to be and i need to get out of it.

  • #7096 Reply

    jerri

    I have been caregiving for 15yrs 24/7 .I find myself isolating more and more…my connection to outside is if family come by or drs /grocery shopping. I battle depression often. Try too pull myself out of it sometimes it works sometimes not…I take meds for that issue…This time of yrs is hardest..but seem to muddle thru ..hope everyone has a great Christmas take Care

  • #10630 Reply

    Lona

    I have been the sole caregiver for my husband for nearly 3 years now. He had a mental breakdown at work, was hospitalized for 3 weeks. The hard work was instant, as the mental illness stigma even invades the mental health ward! If not for my research and pushing the doctor to do something other than medicate him into a semi comatose state, he would not even have a diagnosis. He has Schizophrenia and Dementia. He did not get a single visit from any family member but me the entire time he was hospitalized. His siblings blew a gasket about the no contact the first week order that I established while he was being stabilized. After that, they didn’t even try. We’ve been homeless 3 times, had zero income, been denied state benefits repeatedly. We have been 3 years in a war with the diagnosing physician for access to his records in order to get him disability. He’s lost his short term memory almost completely. He can no longer follow written or verbal instruction without help. He is 53 years old and is reduced to coloring, watching tv, being read to (when he can follow the book) and simple handcrafts that preschoolers do. He knows it, which is even worse. He’s cognizant enough to realize that something is wrong. He takes his meds, he walks every day, he plays with his cats. After 2 years of this struggle at home, I moved us 600 miles and 3 states away to a place where at least rent and the quality of his home would not be in question. We’ve had no help, no respite care, nothing. It took me a year back home to get him into an adult day care , simply due to his age. I’m starting all over again here in Indiana, and NOW his sister called and has invited herself to come out here and stay with us. I flat out told her NO! Im lonely, I miss my kids and my grandkids. I have no friends here and no ability to get out and meet anyone other than taking a walk in my neighborhood. My entire life revolves around taking care of my husband and the property we live on. (rent free in exchange for caring for the place, thank goodness). Im not a church going person, Im not one for joining clubs. My entire social interaction scope is filled with doctors, therapists, nurses, social workers and attorneys. The doctors say he can live another 30 years like this………..

  • #10633 Reply

    joann

    im my husbands caregiver almost 10 this coming aug. we are also celebrating our 40th anniversary..joe my husband was in a m/c accident while he was at a red lite..he now suffers from tbi/stroke paralyzed on right side he also is a Nam combat vet..i miss him more than words can say..he is my best friend..we are both lonely..for each other..he goes to a day program 3x a wk, so I get my breather..but to tell you the truth I miss my best friend..i cry just about all the time because of so lonely for my joe.

    • #10663 Reply

      Judy

      I understand how you feel. I have been caring for my husband for the last 16 years. The past 3 years have been the hardest as his disabilities are getting worse. They are many days he cries most of the day from the pain. The hardest part for me is that there is absolutely nothing I can do to help him. The ‘pain’ has become the unwanted ‘person’ in our lives and I miss him so much. I miss just being able to have a cup of coffee with him and visit together. Each day I pray that we may have a snippet of time where the pain does not interrupt and take him away. I try to get out and be social with girlfriends or stay busy around the house but I still feel so lonely for just him. I will hold your hand in my thoughts and please know that you are not alone

  • #10644 Reply

    Xanxa

    As I’m a very sociable person, this aspect of caring has hit me particularly hard. I’ve had to find my own ways of coping with not being able to go out whenever I wish, either with my husband (who I care for) or with friends, or by myself. There are many social events which we have to turn down, mostly for transport reasons. What is easy for most people to jump into their cars and just turn up is like mounting an expedition to Everest for us. Neither of us drive or have access to a car, so we always have to factor in the cost of transport (usually taxis) whenever we do go out socially. Even a visit to my husband’s mother costs us approximately £30 in taxi fares, so we have to decide which social events we REALLY want to attend. We manage a rock concert every year or so, plus we try to go away on vacation most years. Other than that, our outings are confined to visiting family in their homes. It’s simply too difficult to go out very often and we’re limited to how much we can afford in taxi fares.

    As for myself, I have a developing career as a fiction writer and I manage several fan groups and pages on Facebook. In many ways my online friends have taken the place of my real life friends. I also do a couple of hours volunteering when I can fit it in around caring for my husband.

    Even before his disability set in, he was far more of a homebody than myself, so I had become used to staying home more often anyway. Now I have a decent collection of DVDs and we both love our music, so we try to make our own indoor entertainment instead of going out socially.

    For the most part, I’m reasonably contented with my life, but every now and then there will be an event that I regret having to miss. However, I love my husband and he always has first place in any considerations of where to go or what to do.

  • #10650 Reply

    Jeanne

    I am caring for my very hard headed and hard to please Mother. She expects everyone (me, dr’s) to fix her yet won’t make any changes to her lifestyle, such as quitting smoking, to improve her life herself. The frustration and anger this causes on my part is huge. I also have lost all but one of my friends since I can no longer go out and socialize…and no one wants to come here to the house of sickness. Family knows what is going on, but well, they have lives. The feelings of abandonment, isolation and even anger of losing my own life (I’m 53), are overwhelming. I want to be going on vacations, dating, and having girls nights with my friends…and then I feel guilty for putting my wants in front of my Mother’s after all the sacrifices she made when I was growing up. I want to give up, really, as if this is “the new normal” life, I want no part. Thank you for listening to my rant, and thank you.
    Jeanne

  • #10666 Reply
    Profile photo of Lulu
    Lulu
    Participant

    Thank you each of you for sharing.

    I’m so tired and depressed all the time I have no good words to share except you are not alone. I hope today is a little easier for you. Later when my husband takes a nap I will have a few moments to just zone out. I will make a cup of tea and look at facebook or watch part of a movie. I am depressed but happy my husband has been given another day of living. I have such disgust for all each of his family members who never ever ever cAlled helped or reached out. Not even to say, how is every thing.

    Sorry for the typos.

  • #18470 Reply

    Theresa Loder

    First …Bless each and every one of you ..
    Looking through puffy eyes this morning after an all day and night wait for my husband to be transferred from a hospital to a rehab for several weeks of therapy and then back home , where I have been taking care of him after a stroke, open heart surgery , and several other surgeries.

    CHF is what put him in the hospital this time and he almost didn’t make it..

    They took over 70 lbs of fluid off him since Feb 17 when he went to ER by ambulance.

    Our situation is a bit different as we live in a motor home in an RV Park..we have seasonal friends that come and go.. Hubby doesn’t get outside much when he is home..
    But we have people that show concern and ask about how we are doing etc.. I try to keep up with everyone on facebook.. We have our sons close by and they help a great deal..

    This is about the forth time hubby has had to get physical therapy away from home after being in the hospital.. Right now he can’t walk .. Just a few steps with a walker.. They use the hoyer to put him back in bed,

    He works very hard in therapy to be able to walk up steps to our motor home and it always inspires him to get home.. He loves living here..

    I do have a hard time asking anyone for help even after caregiving for past twenty years for my parents and his mom.

    Today I am thankful that I can still do this and it looks like my hubby will make it home again in a few weeks.. It is sad when I go everyday to see him that there are so many that don’t have anyone at all.

    We celebrated our 54 th Anniversary on March 16 th at the hospital .. He wasn’t feeling very well that day..

    I am thankful for another beautiful day God has given us..

    I’m glad to have this place to come to to get my mind clear for what I have to do next..

    Sending positive thoughts and prayers to you all .. You caregivers are amazing people..
    Take care
    Theresa

  • #18472 Reply

    Debi

    My new saying is “in my next life.” I took care of my dad years ago when he was diagnosed and subsequently passed of thyroid and bone cancer. I had an infant and was taking care of my grieving mother until she passed six years later. During that time my daughter was diagnosed with muscular dystrophy and scoliosis and has spent every waking hour in a wheel chair. Several years ago my daughter was hit with the H1N1 virus and now requires 24/7 nursing, and relies on a ventilator and has a tracheostomy. She is now 24. She went on to graduate from high school. And she graduated from a wonderful 4 year private university and is working on a second degree. And I am so proud of her as she has been active in the community through her youth and young adulthood. She is an amazing young lady. I had to give up a $50k/year job to help care for my daughter. I know work as her PCA 50 hours a week. The State said that family should “pitch” in more to help care for their loved ones. So they took 20% away in wages a couple of years ago. I barely make minimum wage. Last year I was diagnosed with Stage 3 breast cancer. I have gone through chemo. I have had a double mastectomy. I had issues with the incision healing which has delayed the start of radiation. And now I have about $5,000 worth of dental work that I can’t afford. I keep having to have teeth pulled, but can’t afford to get the denture that I would so love to have. I have not had a vacation or a day off (except for my surgery) since my daughter was 5. That was 19 years ago. This is not the life I anticipated. I am 61 years old. I should be looking forward to retiring. That will never happen. I dream of the day that I might not only bite into a sandwich, but also be able to chew it. Unless I win the lottery, that won’t happen any time soon. Until then – I continue to fight the mouth sores and irritations that come with jagged teeth and open spaces where teeth used to be. I stay home most of the time because I’m so humiliated at the way I look. I try to remember the anticipation and excitement of packing for a vacation. I see friends going to Europe, to Florida, to Hawaii, having girls’ weekends, or just being able to walk into a store and purchase a new outfit without having to save for it or work it into the budget. I am tired of people saying, “I don’t know how you do it.” Or, “you are amazing.” Or “Your daughter is so lucky to have you for a mom.” But what they don’t realize is that when they say that – they are dashing off to get a manicure, or go out to lunch with a friend, or getting ready for a vacation. They don’t realize how isolating being a caregiver truly is. They don’t realize that when your daughter is in the hospital, your phone hasn’t rung for 26 days because social media is so much easier. So … I will have my dream job again – in my next life. I will have the money necessary to live above the poverty level – in my next life. I will have a vacation – in my next life. I will have a beautiful smile – in my next life. I won’t feel so isolated – in my next life. But – I know that in my next life that I will not know the joy and love of anyone as precious as my daughter.

    • #18523 Reply

      Ali

      Hi Debi. Someone posted this site on FB and I started reading posts. I started crying cause I could relate to some of it and because my heart goes out to those suffering. You are the one I chose to write to tonight. On our end we are the caregivers for our eleven year old diagnosed Down Syndrome and diagnosed on the autism scale. In 2012 our son stopped walking suddenly and then he was diagnosed with Legg Calve Perthes Disease. We are Christians and in this case, God chose to heal our son very quickly from that issue. We are so thankful. We have seen other healings. I will pray for you and your wonderful daughter. God also gave me a love of herbs and natural treatments. I hope you don’t mind if I share some stuff. Regarding cancer overall, many people are finding natural methods that heal. If I’m able I will share links here. Regarding breast cancer, I think there may be a problem with some women having too much estrogen. We’ve been getting something called xenoestrogens from plastics and we get hormones from beef and there is a connection with breast cancer and estrogen I’ve read. I look at medical studies quite a bit. I like Hibiscus Flower and something called Amla to help fight breast cancer and lower estrogen. Also Ashwagandha helps in fighting stress and can lower estrogen. I’m not a doctor so this is just “mom” advice you’d have to research. I can show you medical studies if you want. My email is goodplans4you@yahoo.com Put the words – CAREGIVER WEBSITE – in the title so I’ll know it’s you. Regarding your beautiful daughter…. what came to mind is magnesium and bone broth. Doctors tell people to take calcium but it’s actually magnesium that most folks need to strengthen bones. The magnesium causes the calcium in the food to be able to get into the bones. Also if someone is deficient in magn they won’t be able to have proper levels of vitamin D in the body. The bone broth helps provide the building blocks for bones as well. Well enough for now on supplements. I’m so sorry things have been so hard for so long. You sound like such a caring person. I can relate to how people say things but then don’t step in to help. I had a friend of 25+ years and when our son came along she just sort of faded away. She wanted me to go to fun things…. but she couldn’t handle thinking about much less doing anything about what we were going through. Many others fell to the wayside as well. I think we caregivers need to network with people nearby….. find them via facebook or by using Craigslist or something… and then help each other. There is one woman near me who is tending her 34 year old son who was in an accident at 19 and he’s a handfull. Plus her hubby needs attention and her grown daughter moved in and works and grandma does some childcare and also my friends other son has been going through cancer treatment. Lots of people seem to be going through stuff. So I have tried to lend a hand when I can. I do remember some years ago I just wanted to scream and smack a woman in a Bible study I went to. God brought a study to me just down the road so I did get out and go sometimes. It was my only social life other than the dentist (I hear you on those teeth…. I was told I need $19K of work done) as we had some insur. back then. And this woman there would whine about this and that and I knew her life was like 20X easier than mine…. but I managed to not whack her one. I still know her at a distance today…. she has matured some. But she’s still free to roam and I am not. Although in my case I’m free-er than many on the caregiverspace. Our son does go to school now. We live in Poplar Grove, IL. I will pray for God to help you know His love….. God is not religious….. He’s not Baptist or Catholic or Methodist…. but He’s real and He’s amazing. Satan’s real too but he only has a little time left here on Earth I think. So much that is in the Bible is happening all around us. Anyway…. I will also pray for healing for you and your daughter and for comfort and joy and wisdom. And for help where you need it. God bless you bunches. Sending hugs, Ali :0) XO http://www.naturalnews.com/046163_cancer_is_curable_now_documentary_Gerson_Therapy.html

  • #18485 Reply

    Christine Budnack

    it’s really hard when people depend on you to do it all. I’ve been a caretaker of sorts since I was 17, I’m 50 now. First my dad, his car fell on him, but he’d been sick even before that, he was a mustard gas guinea pig from World War II, it wasn’t till the 90’s he was able to explain what happened and why he was sick all the time. After my dad it was my sisters breast cancer, she passed in 2001 after a hard battle, then dad became worse strokes, heart attacks, finally he passed in 2009. Then my mother, in 2009 she found she was going blind and is legally blind now, a diabetic with copd who had masectomy and lumpectomy, 2 different kinds of breast cancer. She’s on oxygen now and having issues. Myself? I’m sick with lupus among other things. I’ve never had a life to speak of. It’s very depressing and hurtful and hard. When you are sick and you are “IT” there is no help despite having brothers who blow the family off, it really eats away at you.

    • #18881 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Christine –
      You’ve been through an awful lot and I’m so sorry to hear that your brothers are of no help. Unfortunately, that’s not unusual—but knowing you’re not alone doesn’t help the pain.
      Try posting your situation on the FORUM feature on the site and see if someone else connects with what you’re experiencing. That might help ease the loneliness.
      Adrienne

  • #18509 Reply

    Cora Rodriguez

    You get into caregiving, because it’s the right thing to do. I was in an emotionally abusive marriage for 23 years. Immediately after my divorce, I became responsible for my elderly parents. My brothers took advantage of my father’s Altzheimers and my mother’s kind heart to the tune of about $300,000. My financial and emotional world became shattered, thanks to these “men” – but I rose like a Phoenix. I’m blessed with wonderful friends and strong belief in doing the right thing. I’m no saint. I cry – I get resentful – I dream of catching the first plane out of town. I will never do that. I helped my father cross over and now helping my sainted mother on her journey. She’s in a wonderful nursing home and I’m getting a chance to take a deep breath. Caretaking is a heartbreaking journey, but one I would do again. I can look at myself in the mirror and know I did the best I could. I’ve learned that nobody does it alone – my faith and friends have taught me that.

    • #18883 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg
      Participant

      Cora –
      I say “Bravo” to you. I feel the same way. I do the right thing; the humane thing; the loving thing. I can’t live with myself otherwise.
      I’d do it all again. No question.
      Adrienne

  • #20882 Reply

    Bob Hidalgo

    I myself wasn’t prepared for the extreme loneliness. I’ve become an extreme loner from being a full time unpaid caregiver for 21yrs.
    As much as I tried I can’t get out among a crowd. What really is painful is not having a relationship. I’ve tried a few times over the years but was politely turned down.
    In the last 14yrs I’ve been away from the house 4 times, the last time was last month with a girl who I was hoping to have a relationship but it didn’t work out.
    It’s so obvious that my loner lifestyle is to blame since I lost my people skills. But lucky for me these girls turned out to be great friends which I’m so grateful.
    But still the loneliness still hurts and plays with my moods. I still often cry when I feel lonely, even though I know I’m loved from the few friends I have I still feel uncomfortable knowing this.

  • #20887 Reply
    Profile photo of Brenda Marie
    Brenda Marie
    Member

    Hey Bob!

    This seems like a pretty tough situation. Why can’t you get out among a crowd? Change you’re mind frame. You know self- talk is the best thing on earth. Instead of saying “I’m a loner”, say ” I am a social person.” As far as not being in a relationship, it takes time to find the right one,have patience. She will come come. Why do you feel uncomfortable knowing that people love you?

    Come back Bob, I would love to read more about this. Feel better!

  • #21960 Reply

    J

    Can understand. Only child, no support and losing everything. My son has asked me to finally realize I cannot continue being a sole caretaker. He tries to help but I want him to have a life. He feels he lost me, his mother, through all this. Doctors tell me I won’t survive much longer (my health is rapidly declining and I need surgery but no one to take care if I am absent) if I continue being sole care person. Parents very antisocial, refuse to even allow me to outreach to Aging Agency and several doctors found them both capable of making own decisions, so I’m in a horrible place.

  • #21961 Reply

    Michelle

    Yes, long term care is and can be a lonely place and it forces you to REACH OUT and face the possibility of rejection, but eventually it results in acceptance in some form or another. You found a community and you are willing to make yourself transparent. That’s a right move, but tough to do. Please find local support groups with human bodies and spend some money on getting respite help so you can get out! Get out, enjoy yourself, create moments of space where it’s all about you and what you enjoy. The one you are caring for will pass on eventually and you can reclaim so much of your own “me-time” at that point. It’s going to happen. So… create a space each day called “me-time.” Consider it a sacred space. Although it hash’t launched nationally yet, youcancare will provide the greatest opportunity for everyone to get the respite time needed to give yourself breaks. Can I just say THANK YOU for stepping up in the role as the caregiver. You could have taken the other role of “I don’t give a shit” – but your own humanitarian spirit wouldn’t allow it. Thank God for that. You are planting seeds of care and they will come up in a harvest. Just you wait and see. Your service will not go unnoticed or unrewarded. It means a lot!

  • #21963 Reply

    Judy

    I would like to stay in touch and learn from you about your experiences. My husband has had a form of Muscular dystrophy for 45 yrs. He is now 75, totally dependent on wheelchair and care. Have 3 caregivers that come in for short periods of time. Nonetheless, our life becomes isolated because of the limitations etc. We have been married for 50 yrs., no events and not much recognition from our two adult daughters, very hurtful. Just a small recognition is very helpful to our daily living. But they are involved in their own lives and don’t even seem to notice. Friends are appalled but of course don’t say much as to save me from further grief. That’s it for now.

  • #22115 Reply

    Laura Boatner

    I’m an R.N. and cared for my mother in our home for five months after a back fracture. To those of you who’ve done it for years, I have nothing but admiration for you. After my mother broke her back she was confined to bed about 23 hours of the day, getting up only to use the restroom and for about fifteen minutes to eat. When she DID get up, she required full assistance for ambulatiion. My back began to buckle because of the physical strain. She also failed to thrive to the point home hospice jumped in. This was covered by Medicare. A nurse’s assistant was able to bathe her three times per week. She was also receiving visits from nurses, social workers, and a chaplain. Because I have had severe depression for about 12 years, I simply could not bear it emotionally. I reluctantly admitted her to a long-term care facility. I was mortified that I had to so, but I couldn’t continue for fear of future psychiatric hospitalization. Medicaid is paying fully for it and I fortunately picked a good facility. I felt SO guilty that I had to do this because I loved her so much, but I believe it was the right decision for us. I visit her daily and I’m making certain she is well-cared for. I constantly check her bottom and heels for pressure sores and for anything else that might be a problem. The nurses know me well and know that I won’t settle for sub-par care. This entire time since her admission a year ago, I’ve only seen a handful of people visiting their family members. I asked one of the nurses about it, and she said that only about 30% have any visitors at all. Even though she’s there, I still consider myself to be her caretaker. I’m her staunch advocate. I guess I say this to let you know that there is no shame in doing this if you need to. Some of you sound like you’re barely treading water. My heart breaks for you. If you do make the personal decision for placement, don’t beat yourself up about it. Just visit VERY often and let them abundantly feel your love. Some of you may eventually need this.

  • #22123 Reply
    Profile photo of Dorothy Pantelides Fleming
    Dorothy

    I care for my mom who will be 88 in July. I can’t leave her alone at all either. She is in daycare during the week because I am not old enough to retire I work full time. My husband of 34 yrs passed away 9 mos ago, so I have zero help with her at home. She has alot of mental issues and dementia so to have company is difficult no one enjoys coming here anymore. I am so lonely I cry alot. I hate weekends because we go no where and nothing and see no one. I don’t know how long I can go in this way and have no choice. Tried to get her Medicaid but the ridiculous run a round they give you with all the information you must gather makes it hard to get. When you work full time you have no time. So, if I could find a better word for what I’m feeling other than loneliness it’s total ISOLATION.

    • #22125 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Oh Dorothy…

      I get it. It does get to be a drag, but when all is said and done, you won’t regret what you’ve done for a minute, and that will bring you a great deal of peace.

      I’m very sorry to hear about your husband. We don’t go through life thinking our parents will live longer than our spouses, but sadly that is sometimes the case. I lost my husband over four years ago. I cared for him and his 92 year old mom. At first there was a lot of company for my M-I-L. Little by little it petered out and days were spent in front of the TV. She passed away six months before her son. That was a blessing. I have no idea how I would have coped otherwise.

      Coming here to express your feelings on the forums is one of the best ways not to feel so isolated. There are also bereavement support groups and dementia groups that might help you feel more connected.

      At any rate, I’m here. The Caregiver Space will always welcome you.

      Hugs – Adrienne

  • #22135 Reply

    Gretchen Monteith

    I discovered the same problem, when I cared for my mom from 1998-2004. There were a couple of yesrs where I gutted it out alone…then came a caregiving site that offered me refuge.

    Before that; I would sit in my driveway and watch cars going to and from their “lives”… And I resented all of them. “Them” included my husband, who COULD leave to go to work (which was actually a tremendous relief because he got mean(er) after Mom moved in), and my sister who would roll in at her convenience, upset the finely tuned instrument that was caregiving, and leave to go back home. I had neither opportunity –

    I still occasionally dream of those early times; but I survived. My marriage, relationship with my sister…and Mom, did not.

  • #22140 Reply
    Profile photo of Lulu
    Lulu
    Participant

    Hello all, thank you for all that as shared and said.

    I wrote a long response but it disappeared and I’m too tired to retype it.

    Angela and Cynthia, I’m sorry to hear how lonely this has been. I feel you. Dave, thanks for the tips bt I’ve done all that. No one gives a cr@p.

    What Is this? I have lived in a other countries and never saw people abandon their elderly and Heath challenged like they do here. It’s so awful.

    My Health has suffered because I do this alone, my husband is blind now from his last stroke, has COPD, bunch of other Heath problems. It never ends, day and night and when I ask for help, any there is never a response. People say they will do this and that or visit but never, ever do, it’s been 4 years.

  • #23793 Reply

    sallypup
    Participant

    I’ve been home from work for over a year caring for my son full time ,my husband lost his eyesight totally last year. I only worked part time before but it was interaction with other people. Now , its funny you know hear from too many people My son is 38 and total care and my Husband cant see to help much anymore, gets over whelming some times.

    • #24515 Reply
      Profile photo of April
      April
      Member

      sallypup – sometimes I feel like I’m always overwhelmed! For weeks at a time. I know the feeling. Hope you and your family are hanging in there. – April

  • #28177 Reply
    Profile photo of miniheehaw01
    miniheehaw01
    Participant

    I isolate myself because everyone says I am miserable. Truth is I have no life. I am caretaker for my mother who lives in my husbands home and when he’s not home and in control she is. All I do is deal with whatever or however they want things. There is no me in the equation. I struggle with love and resentment. I don’t want to do much with my adult kids because I don’t want to be like my mom. I feel so bad and so alone.

  • #28343 Reply
    Profile photo of emjay
    emjay
    Participant

    I isolate myself because I am too tired to deal with friends and their demands. I have a mother in nursing home with advanced dementia. My father lives downstairs from me with many medical conditions. I have devoted my entire life to their well being. I do the best I can but I feel like it’s never really enough. I work full-time too. I find myself second guessing my every move in regards to their care. People think when a parent is in a nursing home you have no responsibility. So wrong. You have even more responsibility as an advocate. It is much harder to get things done right when dealing with many individuals at nursing home.

  • #30016 Reply

    Susan Munz Marengo
    Participant

    It’s been 16 years since my husbands health began its decline. Starting with the heart attack, kidney failure, dialysis (both types), 3 open hearts, kidney transplant (4 attempts), Blot clot on the brain. Numerous pneumonia’s, silent asperation, minor strokes, cardiac sudden death (2). I don’t remember the last restful sleep I have had, I am the sole caregiver, no family nearby. Worn out friends. I have stopped planning for doing things that are not about my husband. I no longer sign up for anything at church or my quilt group…something always comes up and I can’t go. Tired of cancelling out with events and people. There is no room in my home for when I don’t feel good. I live this and breathe this life knowing the only way it will get better for me is for my husband to die. When he had his first sudden death and I was doing CPR in our living room it occurred to me that if I didn’t do anything he would be past the point of return by the time EMS arrived ….. I couldn’t do that. I couldn’t live with myself and I knew those weren’t his wishes. There are times I don’t like to see people because all they can ask about is how is my hubby and how I’m holding up. I live this stuff and breathe it I don’t want to talk about it. Talk about anything else. People who have never had major caregiving are clueless but then a long time ago I was too.

    • #30027 Reply
      Profile photo of Adrienne Gruberg
      Adrienne Gruberg

      Susan –

      It seems to me, from reading your post, that you must love your husband very much. There is absolutely no shame in thinking about how much easier your life would be if he were gone. I used to daydream about what I’d do when my husband finally passed away. At first there was a lot of guilt attached to that thought, but I realized it was just something I did to keep my sanity. As it turns out, what I’m doing with my life is working to help other caregivers by founding this site.

      You certainly know the ins and outs of caregiving—you’ve really been through a great deal and understand that this is a choice you have made—to do it without complaining and without reservation.

      It’s not easy. You’re allowed to complain and have resentment and think about what your life would be like without him. You’re human, after all. But I think you are doing it out of love. I never felt I had much of a choice. But I learned to do one thing that I can share with you that made my life a little easier. My friends were a caregiving free zone. I never asked them for help and I chose never to discuss my problems with them. We would spend time together, albeit on the phone, talking about everything and anything else other than my husband’s health. They clearly knew how I was doing without my saying anything. They were my normal. They were my what life was like before my husband got sick.

      You mention a quilting group – do you have any friends from there who you can call and create a caregiving free zone? Or friends from church.

      The other thing I did was journal. I poured out my feelings and my spirit felt lighter for having done so. Do you write at all?

      I’m glad you found us and I’m glad you wrote about how your life is. It’s very hard and very conflicted, but you seem to know why and have made a kind of peace with it. Please keep posting. It will help you a great deal. I’ll look for you.

      Hugs – Adrienne

    • #44508 Reply

      Mary

      I so can relate to your life.
      I have been the sole live in caregiver for my elderly mum. I have been caring for her 24/7 for the past 5 years and have only received 5 days of respite.
      One of the things that you said that is absolutely bang on is when you said that everyone asks how your husband is doing and you get so tired of answering. I had to ask my friends to stop asking because the first words out of their mouth was “How’s your mum”?
      I am so lonely but I just can’t bring myself to put mum in a nursing home. So I thought I would go online and try and find comfort in reading about other live in caregiver’s experiences. Because unless you have been a caregiver you just can’t understand.

  • #51051 Reply
    Profile photo of Lulu
    Lulu
    Participant

    this is particularly painful when the one we are caring for is our partner and it feels as if they are oblivious and or just don’t see or get how dismal our days can seem.

    we are in couples counselling to cope with this because regardless of the reasons for feeling depressed, isolated, overworked, cognitive issues (of one being cared for) etc. the outcome is still the same. We on the receiving end have the same outcome. Lonely, depressed etc..

    I have been taking m ore time to myself whenever I can and my husband doesn’t like it, makes comments, change in energy etc.. THIS is why we now are in counseling. No one deserves to be treated badly for taking care of oneself.

  • #51053 Reply

    Julie_Borkowski
    Participant

    I dont know if I exactly fit in here, but I dont usually fit in anywhere. I care for a medically fragile child.
    There is nothing I would not do for my child. I love her unconditionally. But the isolation is intense. I dont fit in with other mothers, or any of my extended family. Neighbors dont understand either. We dont qualify for any respite or any assistance whatsoever.

    I have cared for my daughter 24×7 for 11 years. No girls night out, no date nights with my husband, and vacations are just 100 times more work for me. Days out with the family are exhausting because they all have fun while I am the nurse. And you get home and they all get to crash while I get to do more treatments feedings and care. I cannot remember the last time I did not fall into my bed before 4 AM. She cannot go to school, so I am teacher as well as mom, nurse, and handmaiden. My husband helps when he can but he has a full time job as well.

    I hate hearing those suggestions of people who say, you have to do stuff for yourself, or you need to reach out. Those are nice little things that people on the outside like to think would help, but it does not. People like to talk the talk but rarely walk the walk. I have gotten tired of reaching out and getting turned down every.single.time. I dont have the energy or the resources to do anything for myself.

    Ok. I am going to shut up now because I know my experience is not like anyone elses and I am just sounding like a complete looser and whiner.

    • #51063 Reply

      Kindra Krueget

      Julie Borkowsk, I can relate to you. I have a severely disabled 13 yr old daughter. she is full care, tube fed, and I struggle with her care. She has cerebral palsy, and both of us have a connective tissue disorder. I struggle more each year with her care, and family is distant, and rather detached from it all. It’s very difficult!

  • #52011 Reply
    Profile photo of lrg514@hotmail.com
    Lois Gross

    I know exactly how you feel. My husband had his first heart attack at age 43 and simply gave up. Ever since then, I hear nothing else but his pending death. He’s 70 now, so obviously he was wrong. However, about 8 years ago, his kidneys crashed. My daughter donated because she didn’t want to lose him. Neither did I, but now I seem condemned to being nurse, servant and punching bag. A few weeks ago, he started becoming emotionally abusive and I ran to a therapist and a psychiatrist. The therapist has pointed out, not so gently, that he’s been manipulative for a long time and I’ve allowed it to happen. That makes me feel worse about myself. When I retired we moved far from family and friends and now I regret it. I’m very isolated and trying to do the “work” to regain control of my life, but how can you do it when half the time I have to be his advocate and help with even small tasks. I thought in retirement I’d rediscover myself. Instead, I’ve disappeared. I’ve hesitated to write on line about this because I feel terribly disloyal complaining.

    • #52090 Reply
      Profile photo of Paul
      Paul
      Moderator

      You’ve got a lot going on Lois, no question. But if getting a little time to vent can only be done online, so be it.. and no better place than here, among friends & other caregivers. I get the impression though, that you feel complaining (what I’d call venting) is counter to your intentions. Yet the fact is that you’re making a huge, life-long sacrifice: this needs to be acknowledged, though the work is done behind closed doors. Do continue to let the internet allow a window to the outside world and a place of support for you.

  • #55590 Reply

    Tessa

    Caregiving is so incredibly, unbelievably lonely. I’m never alone, but I have to take in the worries of the person I’m caring for. There’s no one to listen to me. And I know that soon I’ll truly be alone…and on my own, with no income, no home, and no one to take care of me when I need it one day.

    • #55622 Reply
      Profile photo of Joy Johnston
      Joy Johnston
      Member

      It is very true Tessa that caregiving can be a lonely, isolating experience. An online community may not replace that in-person connection for everyone, but it’s a good start. I understand what you mean about the mixed emotions in taking care of someone nearing the end of life. I experienced relief, guilt, fear of the unknown future … Looking at the big picture can be overwhelming at such moments, so I tried to focus on the “must-dos” for survival to get through the rough patches.

  • #56720 Reply

    Bonnie Holland

    I am 67 years old. My husband died 5 years ago. He suffered so much the last 2 weeks of his life that I felt a peculiar relief when he died. Plus, there was a certain comfort in knowing if he had survived, he would have ended up in a nursing home the rest of his life being intubated and living in a nursing home in a vegetative state, which he’d always made me promise not let happen. Shock protected me from grieving very hard at first. Delayed shock, they called it. Then it split (I’ve forgotten what that meant), so it took me another 6 months to start going thru real grief. I was just starting to get comfortable with being alone, though, when my 92 year old mother fell and broke her shoulder. She was in the hospital for 2 months when the nurses began pressuring my siblings and I to consider taking her into one of our homes “just till she recovers.” (We later discovered they just wanted her out of their care because her Medicare coverage was expiring.) They wouldn’t speculate on how long her “recovery” would be. Being the compassionate kids that we are, my siblings and I decided Mom should move in with me since I was the only one who lived alone and had the room. Since the nurses and therapists were SO adamant it would only be a temporary situation, too, I obliged reluctantly, mostly because I was concerned it might interfere with the grief process I was still struggling through, which it did. Well, the nurses lied. Our mother was never able to live on her own again and she’s been here almost 4 years now.

    Aside from dealing with my own grief, I began feeling a different kind of loss when, upon moving our mothers things into my home so as to help her adapt to the change, I had to put a lot of my own belongings in storage, including new items I had just purchased in an effort to redecorate so as to help redefine myself since losing my husband. This had been a very uplifting project for me and, today, I don’t even know what items I stored are in which box in the storage unit. Instead, I don’t even feel like this is my house any more because all her favorite things have taken precedence. I don’t even have places to hang or display my grandchildren’s pictures (except for a scrunched up shelf in my bedroom), nor the paintings I had purchased from a favorite artist. Every time another one of my things was taken down, I sunk deeper and deeper into a mindset of this not even being my house any more. I walk around doing whatever has to be done like I have blinders on now. And I won’t bother elaborating on how many visitors come and go now to visit my mother, including occasional nurses. I prize my privacy, but this place has turned into Grand Central Station.

    I’m not always as depressed as I sound right now. It’s just really bothering me tonight because the holidays are coming up and, once again, I’m struggling to coordinate “mom duty” with my siblings so I can go visit my grandchildren for several days, which I haven’t been able to do in months because my siblings’s lives and mine aren’t always make it easy to coordinate. My sisters visit their g’kids any time they want, because they’re not living with our mother 24/7. And even when they do relieve me of mom-duty, they at least get to go back to the comfort of their own home afterwards. I also haven’t been able to take short little jaunts to the coast like I used to, or other places I always loved going for a bit of R&R. Or take advantage of art classes I used to take. Honest, I’ve adapted and found a few ways to compensate, but it’s not the same as having my freedom. I feel boxed in, stuck. And our mother isn’t even that hard to care for.

    I can’t help but wonder how much of me will be left by the time my mother dies. I’ve already developed some health problems that have to be monitored, so whatever time away I CAN steal is usually spent on that. Then I look at my mother and wonder every day how much longer she can possibly live. I’m not without compassion for her. In fact my heart aches for her every time she’s in a bad mood because she feels so useless and without purpose any more.

    The bottom line is that none of us like the situation we’re in. And as I go through the days I can’t help but feel our medical community has exceeded efforts in helping people live so long. I can tell you one thing for sure, there is no way in hell I will allow my daughters to take care of me if I become as debilitated. I don’t deserve this part of my life being usurped by caregiving and I will do whatever it takes to avoid putting the same burden on them.

    I feel cheated out of living the kind of life I expected I could enjoy at my age. Everything I want to do – like taking off spontaneously visit an old friend, or go shopping, or take a class – is restricted now and, sometimes, I honestly feel like I’m dying faster than my mother is. I hate it.

    I probably won’t be able to find this link again, but for now, thanks for offering a place where I can regurgitate my deepest thoughts on this subject.

    I wish you all well.

  • #59298 Reply

    ForrestCom

    Four-time National Gold Medal Champion Chorus VOCAL EVOLUTION have put together an A Cappella show especially for Perth’s FringeWorld Festival 2017.

    “Fun House” is a simple love triangle, with the usual disastrous consequences, set in a freaky circus that incorporates songs by Pink, Kelly Clarkson,
    Britney Spears, Queen, Maroon 5, Toto and even Stephen Sondheim, all magically re-arranged using the complex harmonies and vocal styling that
    makes this art-form so immersive and soul reaching.

    Have you ever heard ‘Titanium’ (David Guetta) in beautiful 4-part harmony? How about ‘Africa’ or ‘Sugar’?

    VOCAL EVOLUTION have added even more layers to their vocal genius by utilizing the skills of 4 Cabaret Dancers and some acrobats.
    A musical extravaganza with not an instrument in sight!

    “It’s time to start the countdown – let’s burn this sucker down”

    [url=https://goo.gl/PZ3EuE]TICKETS AVAILABLE NOW! HURRY! [/url]

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