What’s On Your Mind Today?

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This topic contains 14 replies, has 4 voices, and was last updated by  Lisa Dodson 2 years, 4 months ago.

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  • #9228 Reply

    Tiffany
    Participant

    Greetings everyone.

    Please share with us what’s on your mind today.

    It can be about anything – Sound off.

    I am interested in listening to everyone’s story.

    – Tiffany

  • #18895 Reply

    Bob Hidalgo

    During the last month I’ve noticed a rapid decline in my moms Alzshiemers to the point that its time to put her in a home. In the 20yrs that I’ve been caring for her I made a promise to myself that I would never put her in a home. Honestly I was hoping that she would go to sleep and that the good Lord would take her home to heaven.
    I knew this day would come but I hoped she be gone by then. I’ve been in a roller coaster of emotions constantly crying day n night. The memory of her sister in a home for Alzshiemers is hard to forget, the loneliness, the isolation with hardly no interactions with the staff and the smell.
    In the 20yrs of caregiving I suffered depression from caregiver stress for 3years,lost relationships with family and friends. The very few friends I have are amazing with their support.
    But I have to think if I failed in caring for mom. Sometimes I purposely ignore her just so I don’t have to deal with her. I was fortunate to disappear for a weekend but coming back put me right back where I left off.
    I’m ashamed to admit that I don’t want to care for mom I’m tired. It’s bad enough my dad is fighting 2 forms of cancer. Taking care of them by myself is too much for me.
    This all I have to say for now.

    • #24634 Reply

      Tiffany
      Participant

      Hi Bob,

      Thanks for sharing that with me. I understand how all of this can be very hard for you as a son and caregiver. It is also natural to feel guilt as a caregiver, I have even written a post about this, and everyone else said that they felt the same way. So you are not alone, Bob. We are all here for you.

      When the stress levels and responsibilities add up, we often seek ways to avoid these stressors, and friends and family may not understand that we are in need of warm support and some clarity for ourselves. Some friends may shift away, but if in the end you are left with a few, use them as your support system. I have also written a post about support systems that I’ll like you to read.

      I wouldn’t be so hard on myself, Bob, I know from experience these challenges, all it takes is taking a step back and taking breaks for ourselves and jump right back into the game stronger than ever, ready to face and care for the ones we love. I assure you, that caring for your parents now that they’re alive is an honourable thing to do, and not much others can say that they’ve stayed around long like you. I can see you feeling great satisfaction at the end of it all, if you choose to look at it positively. I believe in you, like I had to believe in myself.

      I hope this helps. I wish to hear from you soon, Bob. 🙂

  • #18900 Reply

    J

    I ended up in ER the other day over stroke level blood pressures. I can’t take it. Trying to care alone for two people by myself is killing me. I outreached for help to agency on aging…what a joke. Talked to lawyer…some help but I don’t have the money to afford. Their Medicare does not cover visiting nurse, etc. they do not have money for assisted living. O. Top of it, my husband wants out of our marriage, said he can no longer live with the confinement. My parents are very hard to deal with, very demanding, bicker with each other constantly. My husband is serious and gas begun planning to leave.

    • #24636 Reply

      Tiffany
      Participant

      Hi J,

      Thanks for sharing. This all sounds very disappointing and I understand why. I am sorry that you had to go to the ER. You shouldn’t have to go through all of this stress alone. This isn’t an easy time for you or your husband, and him threatening to leave, is not a good time for you to battle caregiving alone.

      On the sunny side, J, I am here to tell you that I know what you’re experiencing, and that you are not going crazy, you are perfectly normal. The stressors of caregiving sometimes can be enough to give us caregiver burnout and I know a lot of caregivers on the Caregiver Space that’ve confessed this. I want you to look for the thread about caregiver burnout and feel how many just like yourself are finding understanding and relief there. I know you will find some, too. But for now let me take your mind off things.

      The easiest thing to combat this J, is to take occasional breaks from the caregiving and from anything that you feel may be causing stress. Do an activity that you like that will take your mind off for a bit. This is your space, your time to breathe and regain your clarity and balance. Do not let anyone or anything inside this space until you’ve decided that you’re balanced and ready to face caregiving again. When you approach your parents, know that sometimes people who are sick sometimes do not mean what they do. You are in control of your emotions and you are there to care for them because no one else but you can do it better. You know your parents, and I believe that they are grateful for all that you’ve done so far, even when some days doesn’t seem like it, know that it’s okay to forgive and keep going.

      I hope that I have been a help to you. Hear you soon, J.

  • #18904 Reply

    susan6799
    Participant

    For the past few years, I’ve been the full-time caretaker for both of my parents who suffer from Dementia/Alzheimer’s. The isolation is getting worse for me. My days completely revolve around my parents and I NEVER get a break. I moved my parents and myself across the country to be closer to my sister two years ago in order to get some much needed relief but that has not happened. My sister has been to our house a total of five times in the past two years. She of all people knows how hard caring for elderly parents is. She and her husband took care of his mother for seven years until she passed away. My sister would often complain about how they never got a break. I used to fly back to visit and would take care of his mother while they did whatever they wanted. Now that I’m the full-time caregiver, she has turned her back on me. She hardly speaks to me. When I ask if she can come over, she is ALWAYS busy. What can I do? I’m totally isolated and completely overwhelmed.

    • #24637 Reply

      Tiffany
      Participant

      Hi Susan,

      Thanks for sharing. Your sister out of all people should know how hard caregiving is, and you shouldn’t have to do this alone. But it is true to say that she is stressed, too, but forgive her. So I want to say that I am sorry for what you’re going through alone.

      In times of caregiving some relief is all we need, and I know how your sister would’ve been a great relief since she’s done caregiving before for her husband’s mother. I know how you expected your dear sister to offer care to your mother, and you two do it as a team. But sometimes Susan, some outside intervention can offer assistance as well if it is feasible for you. Have you considered a live-in Nursing Assistant or private Nurse to come in from time to time? If so, I want you to try this and see how this can take some of the load off of you. In the meanwhile, keep trying to talk with your sister. You can even schedule a discussion day with her and sit down and tell her how you feel and that it would really help if she could help mom some days. Maybe her empathy will kick in and it will be a positive response.

      I hope this helps, Susan. Please come back and talk with me.

  • #18905 Reply

    Theresa Loder

    I am so sorry we are all going through this.
    As a caregiver of almost 20 years, for different family members, I am now taking care of my hubby. Stroke, open heart , toe amputation etc. I almost lost him just last month from Congestive Heart Failure and cellulitis infection..
    He was in the hospital up until 3 days ago and now he is in a re Hab for a few weeks to get back on his feet..

    Then he will be home again.. I use any time I have to write my local Representatives and Congressmen and women about things that affect caregiving and healthcare..

    Help I have found is the following
    Meals on Wheels
    Home care which is nursing and physical and occupational therapy

    County door to door transportation for doctor visits ( for wheelchair )

    Mobile Physician Services
    His doctors come to our home for everything and also lab work is done here

    List of numbers for occasional local restaurant delivery

    Have a wash , dry and fold service for laundry.. We live in a motor home full time and don’t have washer and dryer..

    For $10 our small lot is mowed and trimmed

    With a doctor order you can get some home care and respite care even when your loved one has not been in the hospital or a nursing home

    I keep a list of all the great therapist and nurses and doctors that have helped. We usually see them again as my hubby is in and out of hospitals quite often ..

    When we are in the donut hole, with prescriptions I ask for samples from the doctor.. Some prescriptions are less at Wal Mart and some are free at Publix Grocery Stores in their prescription department..

    If any of the loved ones you are taking care of are 65 and have been in the service,
    Check out the Veterans Pension for Aid and Attendance at

    http://www.veteranaid.org

    Or other sites online , you can apply online..

    It’s a little known pension

    My husband is 74 and I am 71 and he has many of the same health issues his mom had . I took care of her and she lived to be 90 years old.

    So far I am healthy . When I feel the load is too heavy I give it all up to my father in Heaven.. One day at a time..

    Bless each and every one of you..
    I am hoping to help make changes as we all may be needing help some day.

    Take care
    Theresa Loder

    • #24638 Reply

      Tiffany
      Participant

      Theresa,

      Thank you so much for sharing such valuable information for fellow caregivers. And also, I want to thank your husband for his Service. I know how much issues our military veterans face today ranging from health to financial issues. It is always good to have someone like you bring these issues to the forefront.

      I like how you are handling things, and taking it easy and breathing everyday is the way to go. It is a honourable service – what you are doing for your husband, and you are leading by example for many caregivers out there.

  • #18906 Reply

    Pam

    I am trying to carve out some time for me. Husband isn’t “allowing” it. He seems fine when I am home, but the moment I tell him I would like to grab a cup of coffee with a friend or family member, he is suddenly he has a terrible headache, or is super dizzy again.
    He has brain cancer, had surgery last August, but is doing well, except Chemo week. I am frustrated.

    • #24640 Reply

      Tiffany
      Participant

      Hi Pam,

      Thanks for sharing your story. It is so very often that I hear this when our loved ones do not want to be alone. Your husband is a strong fighter, and I know how much of a scary time it must be for him. But with you by his side somehow he finds calmness. Look at it that way and feel special.

      I am also glad that you have reinforced one of my remedies for de-stressing from caregiving, and it is called taking breaks. I like that you just want to grab a cup of coffee, and I like that you want to be social with friends and be outside sometimes. Sometimes being in one space can build up stressors and to ease some load off of your husband, it is good for us to project our stressors in an outside environment where it can be cleared and dissolved. Find ways and discuss with him to understand this, once you won’t be too long away from him. Also if it bothers you or your husband that you’ll be gone for a bit, inviting a volunteer or paid companion to sit with him on your breaks is okay, too.

      I am rooting for you and your husband. I hope this has been helpful to you.

  • #18909 Reply

    Carla Aviles
    Participant

    My Mom has vascular dementia. For two years I have taken care of her and my dad (he has ALS). For the past year she has been 100% bedridden. I had to move in with them so I could take care of them. I also have two young kids to care for. A month or so ago, mom seemed to be at deaths door. Then, as if she woke up from a coma, she seems to have all her thinking about her. She isn’t confused and her appetite has increased. I guess I should be happy, everyone else is thrilled. I am not happy, in fact I’m freakishly angry! I have gone two years without one day off. My children and I have had to sacrifice everything! I’m so burned out!! Before, I could see an end, now I can’t. I feel like this is a torture that will never end. It would be different if she could at least walk and go to the bathroom. She just lays there ordering me around and undoing her diaper and being a general nasty person. I do not want to care for her anymore! I’m exhausted and I’ve been sick for three months! Now, as my Dad’s ALS progresses, I am looking at having to take care of two bedridden individuals. Why won’t she just die!!!

    • #24643 Reply

      Tiffany
      Participant

      Hi Carla,

      Thanks for sharing your story with me. I know hard it must’ve been for you to express this. I am also happy that your mom has made some improvement in her cognitive abilities. You have gone above and beyond for these past few years caring for her and your dad, that I also believe that without you being there at their side, your mom wouldn’t have saw positive changes. Thought about that? She knows you as her daughter, even when she didn’t know in the past with her dementia, that familiarity somehow sparked something in her brain. You kept her active, and kept her health intact all up to this time. I want to congratulate you Carla, it is not an easy task.

      You out of all people deserve breaks, space and your time. Time cannot be brought back, but time can also be spent doing miraculous things, and you’ve done just that, Carla. I want to ask, have you considered a live-in Home Health Aid or a private Nurse to do home visits some days? I don’t know if that is something that you would like to try. Let me know how it all works out. Thanks again, Carla.

  • #27231 Reply

    Carrie

    It’s a beautiful day here in NW Arkansas and it’s a good and happy day for my dear hubby and I. He’s feeling good and this delights me 🙂 He has been weaker, had less energy and gets tired easier and quicker of an evening, but that is so acceptable. So what’s on my mind? Wonderful happy thoughts and feelings!

  • #28747 Reply

    Lisa Dodson

    Six months ago I went home after my mother told the social worker she didn’t need any help. The social worker checked the refrigerator for food and noted the utilities were all on. That was a wellness check.
    So for awhile I came up to my mom’s but left when I could. I would divide a week, and have time to myself. I thought if all the chores and errands were done it would be ok for me to go home. That’s not working anymore. I’m with my mom full time again. Her paranoia is so much worse. She began telling me that my father was calling her cell phone during the night. ( He died 45 years ago.) Finally I had her cell disconnected. She does not need any Internet access. I had caught a stranger on her FB friends’ list. There is a house phone so she is not without a phone.
    This morning I was washing dishes and she yelled out for me to leave her dishes alone. She came to the kitchen thinking I was rearranging her cabinets. Hardly. I find her dirty dishes in the refrigerator. That’s routine!

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