When do you know it's time for a facility?

beach4mia · March 24

Hello. My name is Maria and I'm new to this forum. My mother will be 83 in July and is still living independently in a 2 story townhome with laundry in the basement. She has a companion that comes from 11:30 - 4:30 on weekdays. My sister and I spend time with her every Wednesday evening and on weekends when we can. We are both in our 50's and work full time jobs. I am mostly in charge of mom's finances while my sister handles much of the medical end. With that said we support each other when we can, and are just trying to do the best we can. We have seen a lawyer and have all the neccessary documents put in place.

My moms most fervent wish was to be as independent as she can for as long as she can.

It's becoming more difficult to keep that wish. I don't think she is washing herself. She covers it up by using powder. She does get dressed (the same clothing every day for weeks), combs her hair, and applies makeup on most days. Her appetite is not the same and she eats the same food every day. Her nutrition is not good. Her companion plays cards with her and takes her to the store and hair appointments. I can see her mobility is starting to diminish because she doesn't move enough and i'm getting very concerned about the stairs. She is healthy ootherwise except for bursitis in the shoulder.

My question is…when do you stop addressing each new issue that comes up aka (putting a bandaid on things) and decide that a memory care place would be better??

It's so hard to make that decision. She has about 2-/12 years worth of money for private care then she'd have to go on Medcaid. What if they don't have a bed for her? What happens then?

H1235 · March 24

Welcome. When we moved mom to Al these are the things that it considered. If there was a fire would she know and be able to get out (the idea of her dying in a fire is horrifying)? Will she listen to the limitations you set for her or is she becoming deficient? For example will she go up and down the stairs when alone even if she is asked not to? Is she eating well? (You have said no) It sounds like hygiene is also an issue. Is she wondering? I was told that the idea is to make the move before there is an incident. You don’t want to wait til you come to visit and find her at the bottom of the steps. You mentioned mc, is there anyway she could do Al with the option to move to mc when needed. At moms AL they remind her to shower and will help her with dressing if needed(for an extra fee of course). I think AL still offers opportunities for independence. At the very least I think it would be a good idea to start looking at what is available, where and if there is a waiting list. In my opinion safety should be the number one priority.

beach4mia · March 27

Thank you for your thoughtful advice. You just confirmed my concerns exactly. Her judgement is definately impaired. She is a very regimented person and thrives with routine. She still makes her bed, combs her hair, gets dressed, and puts makeup on every morning. I'm concerned with new surroundings she will feel and be totally lost and she will regress faster.

She can't cook anymore and we had to remove the microwave because it was dangerous. Her diet consists of english muffins with pb and jelly, bananas, and tastycake choc juniors lol

I didn't really think that AL was an option but maybe it could work.

Thanks!

H1235 · March 27

https://alzconnected.org/discussion/comment/239364#Comment_239364

When we moved mom to Al they sent someone to the house for an evaluation. They use the evaluation to determine the level of care she would need(which of course influenced cost) and to determine it Al was a good fit for her.

cfinnell · March 28

In addition to AL facilities, I would also consider an adult home. I moved my mom into one a week ago. It's been tough but I am confident I made a good decision. Going into this process I had a dim view of adult homes and thought an AL facility would be much better. However, in doing more research I came to the conclusion that she would likely be assisted by a revolving door of caretakers. The adult home I selected is run by a wonderful couple. She has a large room with a private bath and a nice view outside. They agreed to a 2 year spend down and then a transition to Medicaid. The only downside is that the other patients are further into their journey. Her attitude towards me and the home swings wildly throughout the day, which is gut wrenching, but I tell myself that this is the best possible way to navigate this horrible disease.

beach4mia · March 28

Thank you….I will do some research on that option in my area. This disease is so heartbreaking. I'm positive we are all just trying to make the best decisions possible for our loved ones. Best to you and your family!

CaliforniaGirl-1 · March 31

I think that people have found that family members often overestimate their loved ones capacity. They put on their best face for us and we fill in the gaps based on our love and experience with them,

This is a decision you will be continually re-evaluating as time goes on.Some of the issues to think about:

-Many PWD seem to be doing ok in their homes in a familiar environment. But as time goes on keep an eye on how they will do in an emergency, particularly when there is no caregiver. That is often where PWD gets in trouble.

-Does she know where she lives and your contact information, in case she decides to go out and becomes disoriented. (Maybe a bracelet with this information?)

-Can you get her a panic button and would she use it? (My LO would not)

-Is she eating? Can she use the stove and microwave safely? Are you finding food left out?

-Is she taking her medication?

-Is she lonely and would she enjoy more social engagement?

It sounds like you are on top of a lot of these things. By and large almost all of us are coming from a place of love and reluctance to decrease our LO's independence. The desire to care for and protect our parents is very strong. So we may end up deciding that they need to move only after some precipitating event occurs (us)

Laurakoetje · March 31

For us, when we were worried about her safety, it was time to move. Frankly, I wish I had moved her sooner. Also wish I'd have moved her to her current home first. (Transition was horrible.)
She loves hanging out with people her age, enjoys the activities and now feels that this is home.

Bluebird · 1:35AM

https://alzconnected.org/discussion/72621/when-do-you-know-its-time-for-a-facility

Make sure wherever you place her will accept Medicaid. In some states Medicaid will cover the cost of AL or memory care in others Medicaid will only cover nursing home care. In my state Medicaid will only cover care for nursing home care or memory care if it is attached to a nursing home.

Don’t be surprised if your mom is worse after you place her. Years ago when I placed my mom she was worse. We think she was barely holding things together at home and because she no longer had to worry about taking care of things, after being placed in Assisted Living, she was finally able to relax. Our guess is once she was able to relax and knew she was safe the progression she’d been trying to handle the best she could started showing up. After a couple of months although her Alzheimer’s was worse she was much happier and content than when she was at home.

beach4mia · 5:38PM

https://alzconnected.org/discussion/comment/239722#Comment_239722

I think that's a true statement in the beginning. I'm around her enought to know that she needs more help then she lets on. My mother is a very private person who dislikes asking for any help. My concerns are her diet, her hygyine and safety. The companion is good for keeping her company, taking her out, doing some laundry, telling her to take her meds and some light cleaning. but her hours are 11:30 to 4:30. She comes down a flight of steps in the morning and goes back up at night without anyone there. Do I invest in a chair lift??

She can eat 4 englsh muffins in a day and about 4 bananas. That's literally all she eats. She won't open the refrigerator. She prepares what is the easieat for her. No stove. We took the microwave away.

I don't think she knows her address or phone number in the event of an emergency. I don't think she'd wear a pendant or know how to use it. All elecronics confuse her. She keeps 1 channel on the TV.

She has a clock that tells her the date or she wouldn't even know what month we're in.

I offered to help her with a nice hot shower and she refused.

I think it's time, sadly. Thank for your input. I really appreciate it.

beach4mia · 5:40PM

https://alzconnected.org/discussion/comment/239754#Comment_239754

Thank you for your comment. It really does help to hear others experiences.

When do you know it's time for a facility?

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