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Katiexo Asked January 2022

Early Onset Alzheimer's and Memory Care at 65?

Hi, does anyone else have experience putting a younger parent in a memory care facility?


 


My Mom went to a day program that she loved and we were on the waitlist for a bed anticipating the future for over 4 years. A bed opened up unexpectedly and given my Dads burnout and her decline we decided to try it. We both have immense guilt.


 


She is the youngest one there, and I just feel so sad that she's not home with us, not with her grandkids or dogs. When she was home she was very aware of who we are and where she is but she has no shorterm memory. Can't get food on her own, we have to pick out her clothes and reminder her to shower although without help she won't remember to use soap, etc.


 


I made the decision because if we pass on the bed we go back to the bottom of the list (state paid bed), my Dad is older and if anything happened to him I'd have no way to care for her while working, and I don't have the finances to pay for her at a facility.


 


I have immense guilt and visiting with her she just seemed so sad although she didn't say she was I could sense it.


 


When she is home she just sits in a chair and follows my Dad around, its no quality of life but she seemed happy.


 


I want to take her home but I'm worried that's my own emotions driving my decision because of my guilt and feeling sad.


 


I guess when I'm there she just doesn't seem as advanced as the rest of them and I'm wondering if I placed her to soon and others experiences with younger parents in memory care...

lealonnie1 Jan 2022
Leave mom be where she's at and give her a chance to settle in and adjust. Bringing her back home puts the burden on DAD once again, which isn't fair to him since he's suffering from burn out. So any future decisions of this nature need to be made by him, especially since it's taken 4 years for this bed to become available in the first place!

Early onset Alzheimer's and dementia is a sad diagnosis for the whole family. Everyone grieves the loss of the person who once was, but is now lost to the nasty disease process that robs them of their personality.

The good thing about memory care is that mom now has others to socialize with AND she still gets to see her husband and daughter. But you and dad don't have to do the hands on caregiving that will only worsen with time. While she may not be as advanced as the other residents yet, that can quickly change.....nobody knows when or how dramatically they will, either.

My mother had to move into Memory Care in June of 2019 for moderate dementia combined with severe mobility issues that made her no longer a viable resident for regular Assisted Living. So she too wasn't quite as bad as the other residents in that she was more cognizant. But the others were more mobile. So they all had different deficits and learned to live well with one another as peers. Today my mother has advanced dementia to the point where she's quite a bit worse than many others that reside there, and it all transpired rather fast. Dementia takes some wild and unexpected turns, let me say.

In 2019/2020 I worked at a Memory Care Assisted Living facility as a front desk receptionist. I got to know the residents who were all in differing stages of Alzheimer's and the other dementias. Linda was a resident in her late 50s, the youngest. The second youngest was a Viet Nam vet at 68. Both of them were very quiet; Linda never seemed happy, but that was her demeanor. She never veered from that straight lipped look either, even when her hubby came to take her to dinner. Her lack of facial emotion was indicative of the dementia, not of her emotional state of mind, which is a very common thing. Maybe your mom is not unhappy at the MC but just like Linda; expressionless. You say she "seemed happy" at home, yet sat in a chair all day and followed dad around. That's called "shadowing" by the way. You say 'that's no quality of life', which is true.....so let her try to develop a better quality of life at the MC thru activities and outings, etc. Allow dad to have a better quality of life as well now that hes free from all the caregiving worries, that's my suggestion.

As far as guilt goes, that's a wasted emotion but goes with the territory for a lot of us. If you brought mom home, you'd feel guilty for putting the burden of care back on dad. It's a no win situation, so accept that mom is cared for where she's at and plan more trips to see her, you and dad, that's my suggestion. Take her small gifts, out for a meal, ice cream, watch a movie on tv, etc. Don't put your guilty feelings onto her and say she's sad and you can sense it....unless she's telling you otherwise, she's probably doing fine. If both you AND dad think otherwise 6 months down the road, then reconsider taking her home. I'd be real careful about doing that though, especially if she becomes incontinent or starts staying up all night wandering around. That's when in home care gets VERY hard bc there's no sleep for you or dad.

I just read about mom's roommate being mean....not okay! See if the administration can give her a new one stat! 😶

Wishing you the best of luck.

Beatty Jan 2022
From what you have written & from my own experience I would have made the same decision as you.

Yes it is sad. It really is. But it does happen that early onset Alz strikes. I remember that film Still Alice - cried
my eyes out.

I think you have made this decision based fairly & sensibly. Many fail to do this. Instead, they get fixated on keeping someone at home, despite the bigger picture. Despite the ever increasing needs. Despite this bringing great stress into the caregivers. We hear many stories here of caregivers that developed major health concerns or even passed away. I personally have heard of 3 that passed (heart attacks/cancer) but also 3+ strokes, survivable but major life changers.

If it helps, change the script a little on this part: "I'm wondering if I placed her too soon".

To get the timing exactly right would have been perfect. But even if all the money in the world, finding the right place with availability just at the right time it was needed is probably a slim chance.

Nonetheless, a little early is propably a lot better than way too late.

I have met a couple of younger people in aged care settings. MS, ID, Down's Syndrome. One lady I especially remember was very social & loved company so the staff ensured she got to many activities, in her area & other floors too. The right day activities can make a big difference. Speak to the Manager or Activities Director about Mom's interests from her day program.

Another place I visited also had 60/70s music, not just 'crooners' era.

I wish you peace as you all adjust to the new situation.
Katiexo Jan 2022
Thank you @Beatty. It was helpful for me to read someone's perspective from the outside as I feel like I made a decision based on the facts and now my emotions are making me second guess everything.

Today was especially hard, my Mom always had low self esteem and was very meak but a heart of gold and today I found out her roomate has been verbally mean to her any targeting her. I plan to talk to the facility to see what measures can be taken. Hearing this just made me want to take her home.

I'm in my early 30s and have been been caregiver for her for a better part of half my life, its taking time to adjust.

Thank you again for your words.

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