Progression - coping with ongoing loss

Anonymousjpl123

Just a vent and an update. My mom is safe in a great MC. It costs a fortune and probably some of whatever inheritance I’d get but it’s worth it. I’m her sole caregiver. She’s doing well overall - still able to go out to dinner sometimes, still mostly knows me, still able to laugh - but her memory and adls and symptoms are progressing so fast. Because she has Alzheimer’s and NPH, its memory, incontinence, and mobility all going down. I see her 3-4 times a week.

There’s no crisis, but watching her downward progression is horrific. The minute anyone hints I take her home with an aide I’m racked with guilt, although I’m getting better at shutting it down with “That’s not an option.” Another care meeting next week to talk about assessment (mostly her declining Adls, double incontinence, refusing help from staff).

I know we usually post about specific issues, but how do others get through the daily slog? If I had even one other family member involved it might take some of the pressure off.

M1

it’s very hard when you’re the sole support, regardless. Wish I had suggestions, but I don’t. Lots of empathy though. Frankly not sure that someone to share it with would make it easier though. At least you get to make the decisions without argument or disagreement.

H1235

I have a sibling to share in all of this and trust me it’s all you might think it would be. My sibling probably causes me more grief and anxiety than my mom. I find myself thinking this would be so much easier on my own. I guess the grass is always greener. It’s amazing how strong we can be when we really have no other choice. Hold strong you are doing the best you can, that’s all you can do.

Anonymousjpl123

M1 I always tell myself that. Empathy helps.

Chug you’re so right. I’m sure I would feel that way if my sibs were involved.

Thanks to both of you for the encouragement. It’s so true: this has definitely been more difficult than I was expecting.

2parents/brain change

My mom is 8 hours away from me. She is Skilled Nursing Facility, Memory Care Unit. I have so many 'sister issues!" as my sister does the hard work of visiting mom along with my brother. Without texting, I would not much less and i often think, if I knew less i would worry less. That probably doesn't make any sense at all. Here's the thing, my sister and I are miles apart in how we would communicate with mom. It's a daily job for me not to judge my sister but let things be. The staff is competent. I relate to my brother which is a very, very good thing. In the end, we all just do the best we can with what we have. I truly believe that. There are those who don't try at all, but for the most part, folks are doing what they can. Take good care of yourself so you can go the distance, no matter what lies ahead!

livefree2

https://alzconnected.org/discussion/69723/progression-coping-with-ongoing-loss

I also have family members and even friends that think I should bring mom to live with me. I like your answer …it’s not an option” vs me explaining all the reasons it wouldn’t work. Thank you!

Anonymousjpl123

@2parents/brain change so true. I imagine my siblings question things too. Memory Care, home care, it’s all such a difficult road. I love your reminder: we really are just doing the best we can!

@livefree2 I so agree. Usually I over explain but that first answer is the best. The most important thing is caring, and sticking with someone, and making sure they are safe and not alone. It’s truly the best we can do.

Anonymousjpl123

Also, if I may add to my vent, the number of CNAs who actually make negative comments about MC at my moms place - and who I sense the “tsk tsk” that moved my mom - is so much higher than I can count. Not sure how they are in a position to judge me, and it seems obvious she would deteriorate since her progression is why I moved her in the first place! God. People are so annoying.

Anonymousjpl123

Using this a bit as a blog. Pet peeve number 2 about caregiving: two days off to myself and I feel guilty.

Emily 123

No worries, jpl!

It amazes me that there are a lot of places out they won't consider resident's appropriate for the move to MC until the very late, physically debilitated stages.

My mom's original 'dementia focused' AL was like that. They wouldn't move her because she hadn't physically deteriorated 'enough', but they weren't staffed or willing to take care of her increasing needs. The expectation was that we would provide significant support by paying out of pocket for an aide. The CNA's were amazed I wanted to move her from there, where they wouldn't/couldn't manage her care enough to keep her clean and presentable. Ridiculous.

Don't you dare feel bad for taking care of your mom. And I hear you about the guilt, & I don't visit nearly as often as you do.

Anonymousjpl123

ahhhhh!!!!! @Emily 123 i cannot thank you enough for “getting it.” You get it. I’m so happy I did do some self care as I can now visit my mom and not feel off balance or resentful. Guess the guilt was worth it.

I am fascinated by how limited the mindset you just described is. That is EXACTLY what the aids at my mom’s place recommended, and we not only couldn’t afford it but she had a breakdown before it could happen. I never questioned her need for memory care but when others ON STAFF where she is question it, it makes me feel nauseous. I feel like there has to be some in between, which, frankly, is what I’m providing by making sure she gets out and spending a lot of time there. They also, to their credit, have been getting her more involved.

The thing I can’t handle was the implication that she deteriorated BECAUSE of the move, rather than the reality that I moved her because I saw the deterioration and couldn’t handle it or make sure she was getting proper care in AL.

anyway thank you for listening to my vents. I’m so glad you found this place too.

Quilting brings calm

The ‘deteriorated because of the move to a facility’ is so annoying. Yes, PWD get stressed out from a move to unfamiliar surroundings and temporarily show signs of that stress. But it’s not permanent. If we decided that the best place for them to be was in a facility - we decided it because it was in their best interest. A temporary reaction to the move doesn’t change that.

In addition, PWD decline. That’s the truth no matter where they are. It may be slow, it may be fast. It may be gradual, it may be sudden. Trying to make caregivers feel guilty about it is usually done by people who don't understand dementia, don’t understand the benefits of facilities, or refuse to admit their own caregiving choices might have not been any better than ours.

Anonymousjpl123

@Quilting brings calm absolutely. But what I cannot for the life of me understand is why STAFF would say it! My mom is in one of the top facilities in my area.

And yes, she’s declining - but nowhere NEAR the point I think she would be without the care she’s getting. She’s got dementia. That’s part of this gig.

We’re actually having a really nice visit today and at the moment she’s resting, but she literally just told me how glad she is to “have very few responsibilities and everything she needs.” I found a book on her bedside table! She’s actually doing really well there overall - so much so that we can still have day trips. Her old friends are coming next week to visit for her birthday. And yes, I have warned them about her decline but she still knows who they are and that they’re coming to see her.

I have got to stop listening to people who are not in my shoes or my life.

Maybe staff there are a little resentful that I “get to have” this time with my mom without having to worry about the day to day. Who knows. I’m done guessing why they would ask “have you ever thought of taking her home to live with you?” They are all actually quite good. For all I know they ask because I visit so much.

quilting, it’s true - my mom has had periods when she declined rapidly, and she still is progressing, but she is not in any way miserable the way I worry. I’m so glad for this place.