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I want to hide

JC5
JC5 Member Posts: 173
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I just don’t want to get out of bed and face the day! To face DH. Sounds awful and I feel terrible saying it out loud, but it’s the truth! So many things that brought me pleasure no longer do. The sweet sound of the birds in the morning, going for a walk looking for sea glass on the beach, sitting on the deck on a beautiful day. What once was enjoyable is so fleeting now knowing what I have to face. All I face now is a cranky man who doesn’t shower or shave, sleeps in the same clothes he’s worn for days, whose forgotten how to properly wipe himself after a BM, picks food out of his mouth and insists on being attached to my hip! I’m not blaming him, I know it’s the dementia. I’m finding it so hard to show compassion and understanding I want to hide,bury my head under the covers and wish this all away. How do you face each day, how do you stay positive and compassionate?

Comments

  • BethL
    BethL Member Posts: 875
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    Get some "me time." You need it desperately. Adult day care, "friend" that you hire (caregiver) coming to the house to give you a break, respite stay in an MC facility.

  • JDancer
    JDancer Member Posts: 469
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    I get out every day, for a few hours at a time. It does help, especially since the time is spent swimming or socializing. There are no adult day cares or MCs that offer respite care in my area. I will eventually hire caregivers to come in, but now he is so attached to me, I fear it wouldn't go well.

    I know I sound terribly negative, I think that's the depression talking. It's a catch 22

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,541
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    yep. Depression. But at least a justified depression. One you know the reasons for. My screen name tells you what I do to deal with it. Quilting and reading both lift my spirits.

  • JC5
    JC5 Member Posts: 173
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    I too get out everyday, even if it’s for an hour, but the guilt is terrible. DH can stay home ok for now but he wants me around all the time. While I understand it, it is suffocating . There are no daycare places near me so I guess in time I will hire someone. Appreciate your comments.

  • Jeannielou
    Jeannielou Member Posts: 28
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    Yes! That sure sounds like depression and a trip to the doctor and some medication will make a huge difference. I have had depression and have taken medication for it in the past. I have to be very diligent to make sure it doesn't rear it's ugly head again as I perform as caregiver to my DH.

  • Phoenix1966
    Phoenix1966 Member Posts: 211
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    In a different post, @SSHarkey mentioned to someone that they were going to feel grief with whatever decision they made. That’s so true for all caregivers. You said that you can get out, but feel guilty when doing so. What I would suggest is that you look at your “me time” as a bitter pill that has to be swallowed if, for no other reason(although there are many, your well-being actually being first), you want to be the best caregiver and advocate for your LO.

    Remember the example that is mentioned here frequently: you have to put the oxygen mask on first before you can do so for your LO.

    Take care of yourself. Please.

  • JDancer
    JDancer Member Posts: 469
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  • annie51
    annie51 Member Posts: 169
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    I'm at the same place…I am anxious and uptight most of the time, but try so hard to find joy in the little things. Sometimes DH is so negative about everything and I try not to get caught up in it. I try to stay positive but that isn't always possible. But today, I convinced him to go to our favorite local nature preserve (although he only remembers it when he sees it) and when we pulled in he said "oh, we're going here AGAIN?". I said it's a beautiful day and I wanted to get outside - he ended up really enjoying it, especially when we saw lots of wildlife, alligators included. I just never know when his attitude will be good, so I hope for the best!

  • midge333
    midge333 Member Posts: 337
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    edited April 22

    I don't know yet. I have only been on it a week or two. I hope so.

  • RetiredTeacher
    RetiredTeacher Member Posts: 37
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    Dear JC5, i am in the same boat. I can no longer go anywhere by myself and feel little pleasure in the days I used ti enjoy so much. My husband gets so anxious when I leave the room. I finally have 4 hrs a week.of respite care, a life saver. I highly recommend you find an agencyfor respite in home care. I sure wish I could have 3 days a week but 4 hrs is better than nothing. Go get a massage, a pedicure, go walk the park, got out to lunch with a friend, cry in your car or scream **** at the top of your lungs. Dementia SUCKS! So many talk about the person with dementia but the spouse also goes through hell. You will be here long after he's gone and I think a lot more support needs to be focused in the caregiver. We are here for you. Carve out a little time for yourself every day, even a few minutes at a time not to be drawn down into dementia land. I often find myself dreaming of a better future. I hope you find peace. It's hard

  • Iris L.
    Iris L. Member Posts: 4,454
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    PWDs gradually lose the ability to think things through and to come to conclusions. They can no longer think, if this…then that… For example, if I go to the nature preserve, then I will have a good time. They lose their memories, so cannot remember the nature preserve or anything else, without seeing it. Eventually they will not remember even if seeing, so it will be counter-productive to remind him that he used to go there all the time. PWDs live in the moment. Don't rely on their past memories to do activities.

    Shadowing is common, unfortunately I don't have any suggestions for shadowing.

    Iris

  • ImMaggieMae
    ImMaggieMae Member Posts: 1,036
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    Positive and compassionate? Well, positive is difficult. I start out that way, but even though my husband is usually cooperative (medications help with that) just the sheer workload and monotony of dealing with meals, incontinence and watching that he doesn’t fall, takes its toll on my patience. I always feel compassion toward him even though he drives me crazy with sundowning these days. He’s still him underneath all the forgotten things and the often extreme difficulties with daily things. I want him to live as long as possible as long as he isn’t in physical pain. I know his condition is terminal. We’re all terminal. There are still many things I can do to make things better for him.

    I do fail sometimes and just lose it and say things I shouldn’t or yell when I know it upsets him. I think we all do. His illness makes me incredibly sad and missing all the things we had planned for our future makes me incredibly sad. I need to do better.

  • ronda b
    ronda b Member Posts: 105
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    I thought my DH was just being negative. Didn't realize it was part of the progression. He is negative about everything. It's hard trying to keep him happy.

  • Jazzma
    Jazzma Member Posts: 116
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    As others have said, you're in the right place with the people here. In my experience, anti-depressants really do help. This is a long process of grief, guilt and depression no matter how well you try to handle it. My DH is in memory care and I still cry everyday because I miss him so much. I grieve for the great times we had, and might have had if not for this disease. Accept all of the help you can get. This is a long haul. Wishing you the best.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more