My mom has middle stage Alzheimer’s disease at the age of 68. She’s been in assisted living for almost a year and instead of her settling in, she’s getting more restless. She’s too confused to know what activities are going on and because a lot of the other residents are significantly older, she gets frustrated that they do not want to do much.
She is constantly calling all of us to take her out and even though she goes out multiple times a week, it’s never enough. She keeps calling a select group of us sometimes 15 times a day each, because she’s bored and wants to go out. Because of her disease, she doesn’t understand if someone is working or has other plans.
As part of her disease, she also has severe aphasia, so she’s incredibly difficult to understand.
This is completely heartbreaking and I feel guilty any time I do anything without her.
We are looking into moving her to memory care as they keep the residents busy everyday. However I know she will be resistant.
I second guess every decision we make for her.
Any advice for helping her adjust?
I wouldn’t wish this stuff on anyone.
It's normal to second guess because there is honestly no guidebook that can get any individual's problems "right". This is as individual as one's own finger print.
I think personally that this is rapidly progressing to the point where memory care is needed, and where you accept that there is very little "happy time" in a disease this severe, that takes from one all dignity, choice and sense of self. I am so sorry. This is I know just dreadful to watch.
As one last ditch effort suggestion, some actually have medical marijuana now for some in care, and a friend's mother who was non verbal and acting out, dreadfully depressed, and very confused is now, in Austin Texas, QUITE happy and relaxed. Go figure. Drugs at our age! (I am 81 and avoided them in "my time"; something to look forward to). Then there are some getting good result with a low dose mild anti-depressant.
I wish you very good luck and am so sorry.
Memory care seems like a better place for her. Another thing might be meds for agitation. She may not be as bored as she is agitated. Don't worry about overmedicating. Doctors are used to this sort of thing in dementia patients and will work with her to find the right dose.
I'm not sure who is "all of us" that she calls, but you don't have to take every call. That isn't cruel - it's saving your sanity so you can keep slogging on day to day! This may get worse before it gets better, so pace yourself and do only what you feel you can manage every day.
It might be a good idea, when you are explaining why you can't take her out, to make it more simple. Such as, "I'm working today," then silence followed by no elaboration even if she asks. The broken brain sometimes can't handle (1) "I'm working today" (2) "because remember I told you I have to work Fridays now" (3) "and I have a long shift today" (4) "because we have 3 people out" (5) "with flu." The dementia brain struggles to understand all those words, and your mom has aphasia, which means words don't come easily when she talks or when she tries to link words with meaning. And then the whole explanation must be decoded in her brain, which is not possible if it takes her 5 minutes to remember what flu is. "I'm working today" will suffice.
My LO has aphasia, and this is what I've learned.
Your mother is asking for the impossible by wanting to be taken out constantly. That's part and parcel of dementia....expecting and demanding things nobody can realistically provide. AL is not set up to cater to the needs of dementia residents specifically as memory care is. While your mom may resist the move, she's going to resist everything ANYWAY.....may as well have her resistant in an environment where she is better suited to thrive. Dementia is a no win situation for all involved, so we wind up picking the least bad option for them. Stop second guessing yourself and more importantly, stop jumping thru fiery hoops to make her happy because that's highly unlikely to happen. If you were to take her out 7 days a week, she'd just come up with a new demand! Or forget you took her out at all and insist you didn't. That's the nature of the beast. As long as she's safe and well cared for, that's all you can hope to accomplish with the monster known as dementia. I dealt with it for 6 years with my mother and it's brutal.
Best of luck to you.
Your role now is to make informed decisions for her, as her brain is broken.
As for the phone, I would take it away as she really does not need it, if there is an emergency the facility will call you. We had to do this when our step-mother went into MC, she kept calling us. After 1 day she forgot that she even had a phone.
I am sorry about this, but it is what it is and has to be dealt with it accordingly in her best interest as well as those involved with her. This disease has tenacles that reach far & wide and negatively affects all that come into contact with it.
I'm 60 dealing with an 88 yr old mom. And it's so hard. That's nothing compared to what you have on your hands
I can't even imagine what this is like for you. My heart goes out to you and your family
Activities, however, likely be more limited than al, and there’s no guarantee your mom will do them.
Perhaps it is time for the phone to be “lost or damaged” with your understanding thst the al will call you for a true emergency, along with a med consult for drugs to lower her agitation. The reason anyone’s in a facility is because it’s equipped to do more than family realistically can.
Mine is also bored.. has increased frequency of compaigns* for outings, especially to big box stores. (*request being too mild a term).
Hopefully memory care can be a good fit despite the age gap - 68 so young..
(((Hugs))) to you.