Thoughts from a caregiver who has placed by toolbeltexpert

toolbeltexpert

I had written this last week and saved it as a draft not sure if i wanted to post it, well here it is maybe you are going thru this ?

Well I am well into almost 10 months and some things really get to me. One biggie is dw asking are you gonna take me home with you? That almost immediately sets my innards into a wad that eats at me makes me sad and depressed. Why? I guess for me I always want to fix it. I know I can't fix Alzheimers! But the take me home is always within my power to fix, and denying my dw by not taking her home, that is what's at the root. I can fix that! but Alzheimers always wants to come along,something I can't fix. I have my videos and notes that remind me why Alzheimers isn't coming home, but my dw isn't the same person that went into the mc. Super slow gait now, trouble with words which in part is caused my the olanzapine. But she is so much more easily redirected now. It's the things I THINK I can fix that bother me the most, everytime she asks are you taking me home that pain starts in. Sometimes I make a quick retreat and don't let Alzheimers come and cause my pain, I know home as she knew it is gone everything is different everything but Alzheimers.

Sorry I am really rambling but I need to get it out and realize I can't fix it, I can't fix going home, I can't fix side effects, I can't fix Alzheimers. I can for a moment fix dw's loneliness, I can wipe her tears and advocate for her care, I can try to make her environment pleasant, bring her treats,although I have curtailed that right now. Anything I can fix I will, but Alzheimers has set up home in my dw brain and I can't fix it and its not coming home. Separating my dw and Alzheimers is impossible, it has stolen her, everything , all my memories of good days even then Alzheimers comes and tries to bring me down when I drive past a place we loved to visit or our favorite place to ride and see Gods creation. I guess the only way I can separate Alzheimers is when it leaves my dw in death because it can't go where is is going, I long for that peace for her and me.

I am grateful for her caregivers and the team of folks that can make her smile, she plays bingo and corn hole, activities that help keep her feeling alive. I am grateful for my health, I have slowly started gaining back a little of the 30 plus pounds I lost in 10 months although I don't really need too I am kinda relieved it is not continuing. rambling over.

Stewart

mrahope

I am glad you went ahead and posted this. It deeply touched me. I wanted to cry for all of us who are losing our LO to this horrible disease. Loss follows loss, and being human, I think every one of us would give anything to "fix it". That's the way love is, we don't get to fix it, but we keep showing up. You're doing some amazing things, even though it may not feel that way.

Beachfan

Toolbelt,

No, you can’t fix it, and yes, you did the right thing by placing your DW for your own and for her well being. As long as she is content and well cared for, the best you can do is to carry on with visits, encouragement, love, and in the end, human touch. There will be an end; there will be peace for both of you. In the moment, things are bleak and heartbreaking, but there will be light. Stay strong. Bless you!

LJCHR

Oh, my heart bleeds for you and all of us - it is something you "can't fix". I am a fixer as well and feel so helpless that I can't fix my DH. Just keep living each day, each hour the best you can. That's why the "36 Hour Day" book describes it as "ambiguous grief". The hurt never ends.

Last Dance

FROM: Last Dance

As you stated you can't fix Alzheimer's its like trying to stop the rain. as you said the best we can all do is take care of our love ones as best we can rather its at home or in a MC place. The sad part is that it stays wirh you a long time after they are gone. Death brings them peace and even some relief to you, but it stays around for a long time. I am going on 6 years in June, and for the most part I don't think much about it any more, but somethings or places triggers the memory and fun we used to have, and there are still days I wish I would have done things differently. I was a good caregiver, but when I look back I see things I wish I would have understood and did abetter job of it. Alzheimer's not only stills your love ones life it also stills part of yours and I don't think you truly ever get it back. God's Blessings to you, she is blessed to have you.

Ed1937

Stewart, that was beautifully written. Dementia is not beautiful, but the way you wrote about emotions was. This is something most of us will have to deal with at some time, and I think most will feel the same emotions as you. I'm glad you posted, but I'm sorry it is so hard for everyone here.

[Deleted User]

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M1

Stewart, I agree it's things we all feel. I think the heart of it --for you and for me--is that although we know our LO's are safe and cared for, they are NOT content, and here is nothing we can do to change that. My partner is doing better at her new facility, but today's visit was short because she was back to the "I'm not happy, I want to be with you, you must not want me." Nothing but progression of the disease is going to change that. I don't think she'll ever be content in any facility. Period. And it's heartbreaking, because you wish you could give her that one thing.

Jgirl57

Thank you for your rambling. I was thinking this week that things were going well at our house until we went for my HWD neuro eval visit ( just a check up and simple MMSE) and my HWD proudly said it was Sept 1998. You are correct , we can’t fix it .

Dio

TBE, Thanks for the heartfelt post! It's exactly how I'm feeling, and for many of us here. Placement in MCF may alleviate some problems, but it puts us on a new path with a new set of stress. It's been 3 weeks, but I haven't visited DH yet. I had planned to visit yesterday, but the med tech asked for my patience and to delay visiting until DH can better embrace the new environment, especially since he hasn't had any aggressive episodes and hopefully can stay calm a bit longer. Apparently, DH has been telling other residents that he "doesn't belong" there and "shouldn't have a room." He also told a staff, at one point, that he was waiting for his wife to pick him up to go home. It just broke my heart, wondering if I did right by him. Then I remember the manic screams, the refusal to change soiled clothes and anything to do with hygiene, grabbing me and shaking me silly, not to mention criticizing everything I did, that I was doing it all wrong, that I shouldn't do these things...I mean, EVERYTHING. Still, it doesn't lighten the heaviness in my heart. I'll be dropping off some clothing in preparation for the upcoming warmer weather, but I won't visit. It's just too hard. I'm not that strong. I may cave and bring him home. There's a tug of war raging between my head and my heart. I hate this wretched disease!!

Denise1847

Dear Stewart,

Thank you for writing about your feelings. My DH is not at the point where placement is needed and I will have great difficulty with it. Your feelings and experiences are what I would expect one to feel like, and it is a terrible thing since the placement is the right thing to do - an act of love.

Kaswife

I am in my 7th year of caregiving for my husband. Thank you for sharing your heartfelt thoughts. I haven’t had to place my husband but I realize it’s a whole new set of concerns. You just worry about everything. Dio, hugs to you. My heart goes out to you and all of us whether we are caring for our loved one at home or have placed them…the pain gets heavy.

Ed1937

Dio, you said "I may cave and bring him home." You also said "grabbing me and shaking me silly". If you bring him home, that could be the worst decision you could make. He might do more than shake you silly next time. You'd better think hard before bringing him home. I'm sorry it's so hard with the emotions, but you have to be safe.

PookieBlue

Stewart (ToolbeltExpert)

    My DH often talks about going home. I realize that he rarely knows where he really is. He grew up in Omaha, NE, but has lived with me in the Pacific Northwest since we married 35 years ago. This house, his previous homes, this geographic location, the Midwest etc. are all twisted in his mind. Everything is jumbled and intertwined creating his own reality. I’m pretty sure that what he thinks of as home is Omaha. That is where his brain is most of the time. I’ve read on this forum that home to many PWD is someplace or time when they felt secure and comfortable. I just ask him to tell me about home, and let him leas the conversation.

     I’ve accepted that at any given moment, I may be his wife, his sister, his cousin, or some cute brunette in her 30s that runs around the house doing stuff. The only way I manage to keep some sanity is to just go with it, whatever the circumstance. I think I’ve developed some pretty good acting skills. I try to keep my normal as steady as possible. It’s how I cope, 9 years and counting.

Valerie

DJnAZ

Stewart...thanks for sharing your experience and emotions. My wife will conclude 12 months in memory care in a few weeks. Each time I visit her, and then have to leave, is gut wrenching. Heartbreaking. She has global aphasia that limits her ability to communicate, which as bizarre as it sounds I now see as something of a blessing. While it is obvious she wants to go with me when I leave, at least I don't have to hear her say take me home. She may be thinking it, and her eyes show it, but she just can't say it.

The past four years, especially the past year she has been in a facility, is the most difficult thing I've ever done. I am comfortable knowing she is in a safe and secure environment. And I can only hope she is comfortable in her new reality. But I really miss my best friend.

Joe