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Just some thoughts eating at me
Posted: Monday, July 11, 2022 11:27 AM
Joined: 5/11/2022
Posts: 259

My feelings are thoughtful, hopefully, and down right scared. I know many express these things. I'm no different and for that I'm thankful.

I've often come across others that express gratitude of caring for their LO during their travels with dementia, at how they're honoured to be there for them.  How is that possible, I wonder? Is it just them being hopeful, that if they say it enough times, they'll believe it? Or are they just lucky that they have that mindset? Have I gotten the short end of the stick and am missing out?

I feel no honor, I'm not thankful to be caring for her. I mean, I'm grateful that she has someone who can help her, it just sucks that that someone is me! I'm glad that my work has allowed me to be here for her, I just wish it wasn't needed. 

I want her to be her best self, whatever that may be, but I feel that I'm losing myself to enable that. My journey is so short compared to others and I despise myself for bemoaning. It's been about two years, and others have been going on for over 15. I'm a dop of water in a pail. Is my pail so much smaller than others? I'm hoping, praying, that I'm not here for 15 years. Maybe we can get more hands to help ease the load. But the many hands we have now seem to overly complicate things. More hands should make it easier but I'm unsure.

Every week I think I've had enough, then in the middle, I think I can make it. Then the weekend comes and I'm back at the beginning.

 I'm tired. I'm scared. She's tired. She's scared. What can we do but to carry on? Run the great race. Life was never said to be easy, but I sure wish it was. When will I live in the moment, not worrying about what might or might not happen? When will I stop freaking out over the house settling, thinking she's up at night again? When will my dad actually talk to us about things and not her? She can't help him anymore. But we can't help either if he doesn't share.

I'm hopeful that next week is good. I'm hopeful that today is good. I'm just worried.

Posted: Tuesday, July 12, 2022 12:38 PM
Joined: 6/20/2022
Posts: 398

Like you, I have no gratitude for this cross I’m bearing.  I’m angry and scared.  Every day I tell myself that’s okay, my feelings are appropriate.  My actions are kind even if my thoughts are not, so I forgive myself and move on.  Hugs to you.
Posted: Tuesday, July 12, 2022 2:59 PM
Joined: 4/7/2019
Posts: 532

Hi Cats --

Going through your post ----

I think many of us are thinking similar things even if we don't verbalize those thoughts. I know I don't feel honored or thankful that I'm caring for my sister. I think mostly I feel relieved that it's me taking care of her and that my brother isn't. Still, it's not anything I ever thought I'd have to do, but there it is.

Try not to despise yourself for bemoaning, I think we all do it - I know I do. There are days when I ask my s.o. if I can whine a little to him, and he always says yes (thankfully), so I whine a bit, and then I live on that for a few days.

As you mentioned it's easy to lose yourself - please be careful. I did that when I was caregiving for my dad and I burned out. It took more than a year for me to recover. I vowed not to do that with Peggy, and I haven't. I know it's hard to pace yourself because dementia is so overwhelming and unpredictable, but someone here described dementia caregiving as a marathon not a sprint, and that is so true.

At this point I think I've made my peace with the emotional burden. It's ever present, but manageable - at least for now. This situation is going to last as long as it lasts (for me it's now been four years). And honestly, I don't want anything to happen to Peggy, even though I know it will. Like you and your mom, I want Peggy to be able to live her best life even though her best life isn't what either of us envisioned for her.  And I've done the calculation - how long do people with early onset Alzheimer's live? And I hate that I've done that calculation. But I have to make plans, as I try to do what's best for her.

Maybe a family meeting with your dad where you all put your cards on the table? Good communication will become more and more important as time goes by.

Hoping that today or the week is "good" is all relative, isn't it? I'm not being sarcastic, it's just how I've come to view what is "good" over time. It all kind of revolves around what the day is like for Peggy. I savor the days where she's had a good day, and I haven't had to problem solve anything.

My therapist had a really good suggestion for me last time I saw her. She said as much as possible try to bundle tasks to one to two days per week. That way even if the overall week is bad, at least there might be a couple of good days in there. For me, tasks are all of the bureaucracy that comes with managing someone else's life. 

Posted: Monday, July 18, 2022 7:17 AM
Joined: 5/11/2022
Posts: 259

Thanks Mary! I'm having a hard time forgiving myself for having the feelings that I have. Absolutely no one asked to get dementia and I just feel terrible for letting it mess with my emotions so much. Moving on is certainly difficult for me right now but I'll keep trying.

Gothic, thank you for your words. My heart goes out to you while you're caring for your sister. Your comment about bundling tasks over a few days has been helpful to me. I can hardly get tasks done in one day, much less now-a-days, so having permission to take a couple days to finish is a little weight off my shoulders.

I suppose the people who really mean it when they say they're grateful have a good support group and have their needs met, and perhaps then some. It's truly wonderful for them to be in that position. I'm glad for them, not a bit envious, really. 

Maybe one day we all can get to that point. I will not let my hope die. I will keep clawing my way through and perhaps I'll see it to the end. Life is unpredictable after all.

Posted: Sunday, February 19, 2023 1:22 PM
Joined: 2/19/2023
Posts: 4

You are a much better person than me. I do everything I can to help my mother with dementia but I draw the line at her moving in. She is grumpy, ungrateful, and disrespectful. I will not live like that in my own home. So don’t feel guilty. You are doing more than most.
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