primary support person, not direct care-giver

Welcome. You are in the right place! I understand and sympathize with your situation. My mom wants her sewing machine, wood craft bead, an iron, curlers, hot glue gun, the list could go on and on. Like you I kick the can down the road, hoping maybe with luck she won’t bring it up again. I also avoid any conversation that may lead into these demands (that can be very hard). Sometimes I tell her I couldn’t find the particular item or I forgot it and apologize. When I tell her the facility won’t allow it she gets mad and sometimes says I told them to say that. I try to avoid telling her she doesn’t need it or will not remember how to use it, I can’t imagine that would go well. It’s hard, because if she actually needs something realistic I want to make she she has it, but asking if she needs anything is a bad idea. She would not be ok with me looking through her bathroom or dresser to see if she is out of something legitimate like hand lotion (she would be through the roof mad). I usually just get nosy when I go to the bathroom. I’m too scared to go through her room while she is in the dining room. Again I think this would set her off if she caught me. I hate conflict and I really don’t want to upset her. But when she runs out of something she forgets to tell me or complains that she has been out for weeks and it’s all my fault that it hasn’t been replenished. It’s a difficult situation.

You are definitely in the right place. You can post in any of these sub-forums, and you should read posts from all of them too. Many of us have/had our loved ones in assisted living or memory care, while others feel they should keep their loved one at home. That option isn’t always feasible or appropriate for all.
Are her requests coming during visits or via phone? If visits, try to limit the visits in frequency or duration - when you find yourself overwhelmed by her requests just leave. I found that once a week worked best unless I had a reason to be there more often. If by phone, try to limit answering the phone to once or twice a day. The staff will contact you if you are needed.

Hi pjasso,

It sounds like you've done a good job identifying that your mom's disease is exhausting both her and you. With her having multiple ways to contact you this becomes more a question of how to reduce the disruptions. Am going to assume you're not going to remove her devices, so it will have to be on your end.

Your strategy to have your husband intercept her texts is good. Why not also mute her or turning your phone's settings to 'focus' while you do things for yourself or other family? It sounds like much of what she's texting you isn't emergent. It's one thing to be responsive, another to let this disease run you ragged.

Most of her urgency around her requests will be driven by her memory loss. She may not realize she's calling you so much, even though she can see all the calls or texts—short term memory, the sense of time passing, and the ability to use logic consistently are all lost fairly early in the disease. It may even be that seeing her outgoing texts gets her into an angry hyper-focused feedback loop about a single thing.

Is she on any meds for anxiety or depression? It might be worth discussing starting or adjusting these with her physician. Her state of mind due to the disease can't be comfortable for her (or you). My mother was started on a low dose of Lexapro and it helped her 'let go' of a lot of her anxiety--she wasn't doped up or groggy, but it did help with repetitive behavior. Prior to that she would start looking for something, go through all the drawers, then forget that she'd already looked there and start all over again.

The Ipad—Consider if a longer charging cord will help—I bought my Mom a 10' cord and it helped because she didn't unplug as much, but had to be set up so as to not be a trip hazard.

@pjasso

Hi and welcome.

You are, by definition, a caregiver. It's a rare individual who can be a 24/7 caregiver; dementia care is a team sport. Every kind of caregiving is hard. The emotional responsibility for your mom's emotional well-being carries tremendous weight.

All stages of dementia have their own difficulties for those diagnosed and those who care for them. Given my own dad's disposition, the middle stages were the mostly challenging. He was angry and unpleasant and hellbent on taking mom down with him. Not conjecture on my part, he told me he wanted her to be as miserable as she made him. As he progressed into later stages, he could still be unpleasant, but because we could work around him without triggering him as often and because he couldn't hold a grudge, it was easier in many respects.

Your phone idea is brilliant. Another strategy some here have used is to get yourself a burner phone and program that number into mom's phone. This allows you to avoid her drama while you (or DH) check once daily at your convenience. The AL has your number and will contact you in a true emergency.

HB

Hello pjasso- Welcome.

With your Mother having so many tech toys that can reach the outside world I hope you hold your Mother's DPOA and ,after reviewing the wording that it is active and these actions allowed- have blocked her credit reports with the bureaus , set up an ID acct with the government and control her assets , except ,if needed, a controllable cash card. Money scammed is rarely recovered.

I received a fake traffic ticket recently via some i message route I wasn't aware off [scammers troll for i message addresses, up popped a green notification on laptop, not on the phone ] so if she has open portals they could reach her.

[off topic -

these recent lectures were a real treat , excellent quality , a bonbon box for the eyes & soul. Museum website also has a talk on Monet & Venice]

love the “kick the requests down the road” metaphor. That concept just clicked in a way it hasn’t before and it feels extremely helpful all of a sudden.

I think one of the most common misunderstandings about being responsible for a loved one with Alzheimer’s is the that we are still providing the great majority of the care and mental labor even if our loved one is in AL or MC. I spent all of my breaks during work today dealing with medication issues for my dad, having to deal with the emotional stress of escalating the issue to a manager, and the multiple communications between multiple agencies trying to fix the issue and then make make it was actually fixed…just so my dad doesn’t miss another night of an important med that could affect his mood and comfort. And I am an RN who is well versed in all things health related. In addition to this, I fielded several calls from my dad that were unrelated. All while trying to work. This is a typical day. I also see my dad once or twice a week (for a 5-6 hour day) for mostly appointments (sometimes for fun). And when I’m not with him, I’m mentally problem solving the issue of the day. It’s still a whole other job that takes up time and energy each and every day. This is caregiving.

I also like the term mental labor. It seems my mind is almost always on mom. Should I bring her this, I need to call about a bill that didn’t seem right, she wants new pants but does she need more pants, I need to remember to put snacks for her on my grocery list, I’m concerned about this or that what should I do (thank goodness for the advice I get here), there was rain did her basement leak, she is struggling with her cpap how much longer will she be able to use it…… Its not even big heavy important things or things that need to physically be done, its worrying, wondering, planning, organizing, scheduling EVERYTHING. The weight of it, the pressure, knowing I am responsible for her and her only real advocate it’s all consuming. It just rarely leaves my mind. My brother visits every two weeks and thinks as DPOA I just pay her bills (how hard can that be?).

Mental labor is a perfect description. I live with my mother who has vascular dementia. There is the physical part of assisting her in the bathroom, shower, getting her meals, etc. The emotional part of dealing with the ever changing behaviors, some of which are frightening. I don't know what stage she is in, this is year two of it. We have called 911 on a couple of occasions but often there is nothing they can do. The lab results are all negative and her vitals are probably better than mine. A couple of times we have debated a visit to the ER but then she has snapped out of the almost catatonic state. I have a HHA but she is only four days a week for four hours. Otherwise it's me wondering what is next and how to deal with it. I've a support group but they don't understand because they don't live with it. This has become my support group. Thanks.

Hi @pjasso , like the others, I'm walking a similar journey and really feel for you. It's exhausting to constantly be on high alert, trying to cope with every new crisis. I found "The Caregiver's Script" and "The Second Parenting" by Rutha Powers, to be invaluable. These resources helped me address the tough conversations/situations in providing care for my mother who also has mild-to-moderate dementia, especially the stubbornness that is so difficult to cope with.
Wishing you strength for the journey.

I found fairly robust sample page sections for both on Amazon . That will give you a good flavor.

Totally get what you mean @H1235. The thoughts don't turn off. My mother is always on my mind, it's like there is another life occupying my head space, taking up all the room, while I fit in the attic. I try to find different ways to shut the thoughts off and distract myself from thinking about my mom, but it's not easy. I'm also dealing with a "ghost sibling" who's hardly there and has no conception of the million and one things required to care and advocate for a vulnerable senior.

When I am not with her, I long to be there, worrying about how she is doing (she recently moved into a lovely LTC home). Yet, when I visit, I long to be away. From the feelings of guilt. I know deep down this is the best solution for her given her health needs, but the heart sings its own song. Stay strong!