Feeling guilty

NizhoniGrrl

We’re moving my mom into a smaller apartment in Independent Living this weekend since I’ve had to up her caregiver hours recently and the cost of her 1-bedroom has recently gone up significantly. My hope is to give her more time where she is happy before making a bigger move. But of course she’s just annoyed and unhappy because she doesn’t want anything to change and can’t see or appreciate all that I do for her.

I feel like she is more and more unhappy because I won’t let her spend money like she wants to on things she doesn’t need, I won’t buy her food she wants but is not supposed to have, and she seems pretty bored most of the time. She has put the burden of her happiness on other people for a long time, especially after she was dx with MCI 15 years or so ago. She complains that family members don’t call her when I tell her about something but she won’t call them, for example.

I know rationally that I’m doing the best that I can for her and much of her situation is not only the advancement of her dementia but a consequence of her personality and passivity/over reliance on my father, etc. She has let me down in so many ways over the years and I feel like I just don’t have a well of patience for her, but I’m the one stuck with all the responsibility for her.

I do wish that something clarifying would happen to make the next step for her more clear. Like she starts wandering, or forgets how to dress herself or skips meals, so I can justify a move to MC, or she develops a physical disability so we can move her to AL (and her LTC can kick in). But I’ve made the decision to try the smaller apartment and we’re just going to roll with it. Wish us luck!

Quilting brings calm

It’s possible she’s feeling unable to cope in independent living. My thoughts are that someone who needs a caregiver for other than a temporary issue should not be in independent living. They should be in assisted living. One of her issues in IL could be the way other residents treat her because she has a caregiver. They may feel she doesn’t belong there and may be isolating her.

Are you sure that the LTC policy could not be triggered by her MCI diagnosis or by getting her an updated dementia diagnosis? The average period of time in the MCI stage is 7 years. The behaviors you mention for the future are actually a couple of stages past MCI. You might not need to wait for those to get her LTC to pay for parts of AL. Honestly they could even be required to pay for the caregiver hours you are already paying for.

housefinch

Independent living is for people who can live independently. Sadly, it doesn’t sound like she can do that safely anymore.

NizhoniGrrl

Her LTC policy only applies if she needs help with 2 ADLs on their list. She has one (incontinence) but there is nothing on the list that is cognitive. It won't help with Memory Care or AL until she needs help dressing, bathing, transferring, or eating (not preparing food). In other words, a physical disability (or her dementia is so bad she stops doing any of these things on her own). Her aides give her medication, empty the trash, wash the dishes daily, and another cleans her apartment and does her laundry weekly, they aren't with her outside of the apartment and are only there for these tasks. She plays bridge 3-4 times a week, pinochle and pool, and watches tv the rest of time. She eats most of her meals in the dining room, but she isn't safe with food in her apartment. I throw out ancient and moldy food regularly that she brings back from the dining room, and handle all of her financial and medical management. She bathes daily but doesn't handle her incontinence supplies in a safe manner, which is why I have her bathroom disinfected weekly.

Her recent cognitive assessment called for 30% cognitive support, independent living with daily check-ins, and her scores were: ACLS-5 score 4.6/5.8, MOCA 21/30. She can dress herself and never misses a meal, or wanders, etc. It's frustrating. If money was not an issue I would pay for daily aides for 4 hours a day.

mabelgirl

wow that’s so unfortunate. My mom is in AL and they do all the tasks your moms aide do and my mom is not totally incontinent. Is there any way to challenge the LTC denial? Could a doctor categorically state she needs AL?
Prayers for smooth transition and hopefully a break on the LTC policy.