Mom With EOAD Lacks Motivation

allenico

Hi,

I’m grateful to have come across this resource. Last year, my mother (60 years old at the time) was diagnosed with EOAD. While the diagnosis came as a shock for someone of her age, we were noticing a decline in her cognitive functions, particular with regards to time (not knowing what day it is, showing up to to events/appointments far too early). But overall in terms of severity, it still seems “mild.” As in, she hasn’t forgotten friends and family yet, and if she’s out and about, she can find her way home.

She’s just recently started Leqembi which we’re very hopeful for, but the big problem is she just lacks a motivation to do anything. She’s never been technologically-savvy, so now it’s almost impossible to expect her to look for classes/activities to take. And we sign her up for Alzheimer’s groups and whatnot, which she participates pretty willingly in. But anything “fun” like an art, cooking, yoga class etc. always gets shut down by her. She’ll come up with excuses like “I’m already doing enough” and “it’s too expensive” and just get it in her head before trying anything that it won’t work out. This is despite her doctors telling her that staying active mentally and physically is the best thing she can do right now.

Realistically, this is probably something more akin to depression than anything, but has anyone else here dealt with a similar issue and have any advice?

She lives with my dad who still works full-time. I (27 years old) live ~5 hours away, and my sister (31) is very far away in a different country. I try to help out where I can, as does my sister, but it’s definitely been taken its toll on our dad who has been juggling with being a caregiver and living his own life.

Thank you

M1

Welcome to the forum, though i am sorry all of you are dealing with this at such a young age. Unfortunately, apathy and loss of executive function are major features of the disease, and there's no fixing it. she can't overcome this, and you should not push her. She will likely do less and less with time. Doctors say "stay active" because they have nothing else to offer, there's absolutely zero evidence that "staying active" makes any difference whatsoever. The brain is not a muscle, as a wise member said on a different thread today.

unfortunately leqembi does not appear to be very effective in women, so I wouldn't put a lot of eggs in that basket either. I hope you can visit frequently while she's still in the early stages, this is definitely bucket list time. And I'm sorry, again. It's a very hard road. You have come to a good place for advice and support, and if you read a lot of threads you will learn a lot. Maybe your dad would like it too.

mabelgirl

I wonder if it’s really lack or motivation or just feeling frustrated that she can not do the activity? It’s very difficult for me to sit back and just let my mom be because I’m thinking just try it , but she doesn’t. What kind of life is that? So I have to remind myself it is her life such as it is and I should not look for her to live like I think I would if the tables we turned.
I hope your dad and you look into getting in home care companion to help lighten his load. I wonder if driving is still a good thing? My mom got lost in the VA/WV mountains for nearly 2 hours with a 9 month old baby because my brother thought she wasn’t that bad (we warned up many times prior to not let her drive). I’m thankful that God watched over them until they found her driving around.
Prayers for guidance.

kblau

could be side effect of leqembi but most likely this is the disease. It’s hard to watch this. You can try an anti depressant. I did with my mom early on in her disease but it didn’t do much - as they lose brain receptors some drugs don’t work as well. I would say - let her lead. Don’t push. Just listen. And enjoy these moments. Focus on building her confidence. Never knocking it down.

allenico

https://alzconnected.org/discussion/comment/217550#Comment_217550

Sorry for the late reply, I really appreciate your response. I do think it’s more a lack of motivation - she’s on antidepressants as well. While, granted, it might be hard to introduce her to a brand new activity (she tried yoga but didn’t wish to continue with the classes), something more familiar to her such as arts and crafts or baking I’d hope would interest her more. Or even reading. And no she doesn't drive - we live in a very walkable city which is great since she can go out in the neighborhood which I think gives her a sense of autonomy.

But like I said, she just invents these excuses that aren’t related to her disease. And then can get frustrated when we push back against that. And the thing is, I know she’s bored because some days she’ll call me and/or my dad all throughout the day.

At the end of the day we just want her to be comfortable and happy, and it can be hard to when she doesn't tell us what she wants.

allenico

https://alzconnected.org/discussion/comment/217554#Comment_217554

She has been on Lexapro, and of course you're right in that she should lead. But she just does nothing all day really. Not even TV or reading a book. And maybe it's the optimist in me, but I just feel like the disease is still too early stage for her to be like this.

allenico

https://alzconnected.org/discussion/comment/217477#Comment_217477

Apologies for the late reply, but thank you very much for your response. I hadn't realize apathy was also a feature of the disease. Sometimes it's tough to separate the personalities from before and after the onset of the disease.

We just want to make sure she feels comfortable and happy. It just gets worrying when, on some days, she'll call me and/or my dad constantly. I had always attributed that to a feeling of boredom, so I was thinking some kind of activity to keep her mind occupied would be helpful. It's just tough when she doesn't really tell us how she's feeling or what she needs from us. Are there any methods to coax that kind of information out of her now while she still can, without her getting too frustrated?

M1

Hi Allen, she probably can’t tell you what she needs because she herself can’t identify it. Is she by herself during the day when she’s calling you? That itself may be the problem. People with dementia become very dependent on the people around them to provide orientation and structure (also called scaffolding). The calls may indicate that it’s no longer okay for her to be left on her own. At some point, you may need to take the phone away too, but that’s another discussion. I hope it’s not a smartphone, as internet access is probably not a good idea.

You say you think it’s too early for these things-but honestly, I doubt it. It’s a natural tendency for all of us to underestimate the disease progression and overestimate our loved ones abilities.

rosecoloredglasses

My mom is also 60 living with Alzheimer's Disease, and she has the same lack of motivation. Unfortunately, as other members have already stated, there no amount of suggesting or nudging that will make your mom become involved in any activities she doesn't want to do. My mom's lack of wanting to do things comes from frustration of not being able to do the thing easily, so I've found the best thing to do is to put my energy into supporting the few things she does want to do. For my mom, it's crossword puzzles! Maybe find that thing your mom still really loves to do if there is one, I also highly recommend you suggesting to your dad the idea of an aid or an adult daycare program for your dear mama, I'm wrestling with this myself but your dad will definitely need some constant physical support sooner rather than later. I hope you give yourself and your family the props you all deserve. Much love!

mabelgirl

https://alzconnected.org/discussion/comment/219160#Comment_219160

you know I read something that your response triggered the memory of. In order to learn something you must have short term memory, if you do not I imagine trying to do things is frustrating. Maybe this is the reason for her behavior.

kblau

https://alzconnected.org/discussion/comment/219169#Comment_219169

Hi M1 - this is the first time I am hearing about scaffolding. I think this has a lot to do with what my mom is struggling with now. I googled Scaffolding and retrieve research from Pubmed. Do you mind dumbing this down for me? I’m trying to understand it…

kblau

https://alzconnected.org/discussion/comment/219161#Comment_219161

yes, apathy is part of the disease. They withdraw for numerous reasons. I think giving yourself and her grace throughout this process will help both of you. I try to do things with my mom to get her engaged. And a get a lot of phone calls from her when she’s restless. She wants to do something but doesn’t want to do anything. It sucks and I’m sorry. When my mom was earlier stage I would give her tasks - like wrapping boxes (saying they were presents), folding laundry, drying dishes. Things I knew she liked to do bc she liked feeling useful and needed.

M1

Kblau, scaffolding is just a term for all the support a caregiver provides for their loved one. It props them up and keeps them functioning, and they come to rely on it and cling to that person in order to keep going. You provide structure and support for them with everything you do, be it keeping the household, fixing meals, helping them dress and toilet, answering questions, giving meds - it's all scaffolding. They would all die a lot sooner if they didn't have a carrgiver to take over the things that they can't do for themselves any more.

kblau

https://alzconnected.org/discussion/comment/219387#Comment_219387

ahh ok thank you. Mom lived with my sister and her family before AL. This probably adds to her demand now for my sister. And knowing where my sister is. Thanks.