Mom with early onset dementia, I'm feeling lost

MW42

Hey all, this is my first post here so I hope this is okay.

I'm the oldest of two siblings and our mom was diagnosed with lewy body dementia around two years ago at the age of 60. She's been in assisted living for roughly that same amount of time. She's on a laundry list of medication and often seems to be in a daze, is slow to respond, gets confused easily, and so on.

Recently (two days ago) she had an episode that was really difficult for me and my wife. We typically see her at least once a week in person, she likes to go for drives so my wife and I take her out, get her a coffee, and she rides along and chats with us. On top of that, I speak to her every day by phone to check in, see how she is feeling, and make sure she doesn't need anything.

Anyway, a couple of days ago she called me on a Saturday morning and said she was feeling blue, she was crying, kept telling me she wanted to "go home" and we offered to come pick her up and take her for an extra ride for the week. We did, and during the drive she was weepy, she said she asked the nurses for her meds ahead of time so she could come stay with us at our house for a while. My wife and I had plans for the day and we couldn't just bring her over and leave her at our house, and I just felt absolutely terrible.

When we dropped her off, I kind of lost it, and just cried and cried, and my wife did as well. I feel so completely lost, frustrated (to the point of anger at nobody in particular, just in general) and overwhelmingly guilty. I can't convince myself that I'm doing enough for her, and I always tell myself I should be doing more.

My sister has three kids and is very busy but she still finds time to visit my mom once a week as well, and frequently speaks to her on the phone. Unfortunately, my mom's husband left town after she was placed in assisted living and has been essentially out of her life since then. I have a lot of anger and resentment for him, but I try not to focus on that.

I just need to connect with some more experienced people about this, which is why I'm posting here. I'm not sure what to do. I feel incredibly lost. I've also been dealing with my own anxiety issues which have flared up recently, so this was especially bad timing, and it just made everything worse.

I hope this was easy to follow, I know it's kind of disjointed.

Any help or guidance would be appreciated. Thank you all so much.

ZarkinFrood

Hello!

Reading through your post, I found that our situations sound very similar and thought I would respond if only just to connect with someone in the same situation. My mother is turning 60 next year, I am the youngest of 3 siblings (although both live in different states, and can’t be physically present much), and I’ve been caring for my mother for the last 3 years, the latter 2 of which she’s been living in our house with my husband, toddler, and I.

I completely understand the anxiety, anger, and guilt that you’ve been feeling. Something I saw on here that has been very difficult to accept, but helpful, is that at a certain point, your loved one’s physical safety is the most you can hope for. It sounds like you and your sister are still playing very active roles in your mom’s life, and while it may be hard, try to give yourself some grace.

I think it’s incredibly easy to fall into that cycle of feeling like you’re not doing enough, and consequently burning yourself out trying to do too much. But know that you can only care for your mother if you’re also caring for yourself. You may not be able to help her work through her feelings, but letting her know you understand, and sympathize with her is often all you can do.

You’re doing a great job, your mother is very lucky to have you and your family!

MW42

https://alzconnected.org/discussion/comment/182236#Comment_182236

I really appreciate the perspective and the kind words. You're right of course, there's only so much we can do. I know you know how it feels, so I won't overexplain, but you're spot-on with the physical safety aspect. She is completely safe and comfortable (at least physically).

I'm always questioning what meds she's on and trying to think of ways to make her better, but I realize that that's all likely just busy work on my part. I've convinced myself at different times that I need to have her here at my house so I can control her diet and that somehow that will make her better. It's just so incredibly hard to accept that this is happening to her, and even though it's been a couple of years, I feel like I still haven't accepted it or let it sink in.

It sounds like you're doing an incredible job for your mom, and I'm sorry that you're going through this as well. Comfort is hard to come by, but your post gave me some, so thank you.

Emily 123

Hiya MW42,

A little Teepa? https://www.youtube.com/watch?v=pfrKFfXkedI

It sounds like you're all taking great care of her. It could be that her disease is progressing and she's feeling a bit more disoriented and lost in time. If her teariness persists, you can always discuss this with her provider to see if her meds might be adjusted.

So often it's a yearning for feeling comforted and in a place that's not confusing, but the disease makes every day confusing, no matter where they are. [I think that's part of why a person is more content to be less active and involved--they're not bombarded with decision-making and environments that don't make sense.]

Think about if you can adjust your visits if she's out of sorts. What can divert her? Should you reschedule? Bring her a coffee rather than take her out? What have you or the staff noticed lately that might be a trigger, and is there some activity they think she might like?

I think I would have tried to take her out for a drive too, if it had been me, since it's your usual activity that she enjoys, but...in hindsight (oh, dementia, it's ALWAYS hindsight!)...putting yourselves in a situation where you had to eventually return her to 'not home' was going to be tough on everyone given how she was that day.

So. You live and you learn, and you try to do what you can, and you don't beat yourself up. We're limited as to what we can make better, and every day is a different day with dementia.

I bet she knows how much she's loved. And she will not want you to tie your emotional well-being into knots over how some disease is affecting her, or be so focused on her that you have nothing left for the family and friends in your life. Easy to say, hard to do, I know, but sometimes you should give yourselves a little break.

MW42

https://alzconnected.org/discussion/comment/182257#Comment_182257

Hey Emily,

Thank you very much for the response and the kindness. And yeah, it's been hard for me to come to grips with the fact that things that SEEM like good ideas to me, might just not work in this situation, like getting her out of her AL apartment and stuff like that. I think that I sometimes project my own fears onto her, and I think "oh i'd be freaking out if I were in that situation" but we never really know what is going on inside someone else's head. If she gets comfort from sitting and watching the western TV channel instead of reading or visiting other residents, then I need to allow for that flexibility in my mind a bit more. Thank you again.

Mike