4.5 years in caregiving

Anonymousjpl123 · January 17

It’s been 4.5 years since my dad died and I became caregiver for my mom. At this point we’ve fallen into a rhythm (of sorts), she’s settled in MC, but it’s sad and hard and financially scary and I feel sorry for myself. Almost all of my free time on weekends goes to her. I feel guilty for even complaining.

I dread seeing her much of the time (it’s usually better than I think it will be). This disease is horrible. Even saying this out loud feels so selfish.

H1235 · January 17

It’s been three years for me. It’s so emotionally draining. Like you, I have fallen into a kind of rhythm. I visit mom once a week, but never know what to expect. I think I brace myself for the worst and like you it’s usually not as bad as I expected. Just once I would like to get groceries without having to pay with two separate orders for moms things and then mine and then have to bring home receipts and record everything. Even with her in a nursing home there is a lot to do. I’ve been trying to coordinate insurance payments with Medicaid for weeks now. No one can give me a straight answer on how to handle this. I check on her house every two weeks. Her house is full but unoccupied (long ugly story), the roof started leaking when we had a thaw a few weeks ago and her sidewalk still needs to be shoveled (my brother can’t be counted on to do it even though he is 2 minutes away and I’m an hour away). My brother hasn’t visited her since Christmas, but she tells me how she calls him every day after her lunch. I don’t think she called me more than a half dozen times all last year. She just called to tell me she needed something and expected me to bring it right over(I’m an hour away). Then told me she told my brother not to visit this weekend because she has a cold and didn’t want him to get sick(what about me). It’s unfair! I can understand those feelings of self pity. Sorry I kind of got off on a bit of a rant there. I get it.

Anonymousjpl123 · January 18

@H1235 that’s exactly it - everything you just described. My mom’s taxes. Trying to figure out how to afford everything. Worrying about all of her affairs - AND seeing her once a week. It’s a LOT: not to mention the emotional toll of trying to stay present and loving when nothing about it is easy. Navigating family. I don’t know why, but your post helped me more than you know. I literally never expected any of this.

Thank you. We’ll keep going.

SiberianIris · January 18

Not selfish at all, and it's good to have a place like this where we can speak freely. It does us no good to keep these feelings inside where they eat away and do a number on our health.

I feel the same way, and it's hasn't even been 3 years yet with my mom. I feel guilty admitting that things are better now since Mom moved to MC 5 months ago.

Mom is actually enjoying the activities and extra attention in MC. If I were to ask if she wanted to go home, I'm sure she would say "Yes", but that's because she has no concept that she needs 24/7 supervision and help with all her ADLs. She's in early Stage 6 with no short term memory. In her mind, she thinks she's doing her ADLs herself and perfectly capable of living on her own.

I've told my husband that if I get dementia to move me to MC sooner rather than later.

Anonymousjpl123 · January 18

Oh yes @SiberianIris you are absolutely correct. That’s the confusing thing with MC - it has allowed me to keep some semblance of a life, livelihood (I’m single and need my job) yet even that small/ big respite comes with guilt.

I actually think your mom may be happier in MC than if she stayed at home - it seems that way for many of the residents in my mom’s MC.

Almost no one has left in 1.5 years, except those in later stages who passed away, which is to be expected. So they have come to know and even love each other, or at least are very familiar to each other, they laugh, and many of the staff really love and engage with the residents too. One woman has zero short term memory but remembers virtually every lyric to old songs, and last night a few of us sat around singing after dinner.

And yet….i feel incredibly guilty not having my mom at home. We have this idea that’s what we’re supposed to do. And for some families, it absolutely is. The “Guilt no matter what” is part of what makes things exhausting. Even with a loved one in MC - finances, health care, etc take enormous time and energy.

I absolutely know it’s part of life. But this disease is different.

4.5 years in caregiving

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