Starting this journey

CassLo

My 87 y/o mother is in the early stages of Alzheimer's and lives in an apartment building that has stairs to get to her apartment. We have been looking at a smaller apartment that she could purchase that has no stairs for entry.

At this point she is still able to do everything except more executive function type things such as banking and getting her meds ready for the week. I do all of those for her and she is still able to do everything else, just slower.

I realize there is no definite timeline to how fast she will progress, but at the moment she can't leave her apartment unless someone helps her as she is very unsteady and we worry she will fall down the stairs. The new apartment would allow her outdoor access that I know would greatly improve her mental state as well as her physical strength as she could walk around more. I have more pros on my list, but the cons are big cons to a move.

I don't know if we risk her buying the affordable apartment and hope it is a slow progression, or keep her (basically locked away) in the current apartment that she cannot leave on her own. She has a limited income and I worry about the kind of facility she would end up having to go to. My family all live out of state and I am the sole caregiver. I would love to be able to have her stay in her home and take care of her, but I don't know if the cost is feasible.

I am 46 and work full time. I can work from home 99% of the time except during a 60-day window at the beginning of the year as my job coincides with our state's legislative session.

Any advise or suggestions are greatly appreciated. This is new to us and its just a whirlwind of questions and indecision.

H1235

Welcome. Sorry you need to be here. My personal experience is that the window between diagnosis and not being safe to live alone is very short. In fact, we were told at diagnosis mom was not safe to live alone and I don’t think she was diagnosed particularly late. I was advised by someone here in the beginning that your loved ones should be in a living situation one notch of care above what they currently need. The idea is, their symptoms are only going to get worse. Waiting to move your loved one after there is a problem or an incident may be too late. One day she may start wandering and get lost, there may be no warnings. Even if she doesn’t use the stove now and understands the possible dangers it could present if she were to forget and leave it on, don’t mean she won’t change her mind tomorrow and decide she is perfectly capable. Many with dementia have anosognosia. This is an inability to recognize their symptoms or limitations. It’s very dangerous! It can also be very difficult to see what is happening behind the scenes. When we moved my mil we found no dish towels in her kitchen. I discovered my mom hadn’t swapped out her toothbrush for a new one in 2 years. I have found that assisted living offers very little extra care and assumes a great deal of independence. You might want to at least take a look at a few and consider that option. Al also offers the opportunity to socialize and make friends.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

April23

Is there anything preventing mom from walking out the door? Just because she knows she can’t leave by herself today doesn’t mean she will remember tomorrow. Also you say she’s unsteady, so things like toileting and showering could also become dangerous.

The advice above to stay one step ahead of progression is spot on. It’s always best to plan ahead for the next stage before it gets here. I don’t think there’s much question she is less safe with stairs than without them.

Victoriaredux

Have you meet with an elder law attorney to discuss medicaid in your state? Have DPOA , health care proxies etc?

Affording 24/7 in home care, because she will need that at some point, is the most expensive option and scheduling is a nightmare . That's why folks select placement , a smaller board & care may be a less expensive homey option -usually 5-6 residents .

I'd check out the options before you buy and sell properties that won't see her to the end . The disease course is not steady and you never know when it may accelerate.

CassLo

https://alzconnected.org/discussion/comment/279918#Comment_279918

I really already knew the answer, I just didn't want that to be the answer. Thank you for the response, this is one of the more overwhelming things to have to tackle.

caregiving daughter

When a person has lived in a home for a long time, and then develops dementia, they are often able to exist in the current environment for a time.

A change to a new environment, could be very, very difficult to the extent they are expected to live independently. The change may even increase confusion and/or create stress. I would recommend that a move or adjustment include additional support.

It's so good that you are trying to think through all this.

CassLo

https://alzconnected.org/discussion/comment/280190#Comment_280190

Thank you, that makes sense.