Caring for parents - Long distance

Tuco · December 6

New here, live out of state of my parents. Dad is over 90, now in a long term care facility for almost a year. Recently formally diagnosed with Alzheimer’s. Mentally he continues to deteriorate but for the moment he seems medically stable otherwise.

My concern now is my mom, approx 90. She is having fairly severe short term memory issues, and other people are noticing, including at my dad’s facility. I’ve received a couple of calls from my dad’s therapists and medical professionals there, concerned for her, and concerned she can still serve as his health care proxy for my dad. Currently my dad is still “full code” and brother or I can’t change it, since my mom is primary health care proxy. Trying to get my mom to make this decision is difficult between not fully understanding and remembering. Even though I get calls from people like the NP and PT, the onsite social worker,who’s impossible to contact, is pretty dogged that mom is primary health care surrogate and mom would have to sign forms to surrender.

That’s one issue, the other is just my mom’s situation. She now lives by herself. I try to get there once every month or two, and so does my brother who is also out of state. She is at this point firmly against any help, such as in home help, and against entertaining moving somewhere more accommodating. Any discussion of memory issues gets her angry and she starts demanding who contacted me and says I am talking about her behind her back. I’ve tried to encourage her to see a doctor about this but she won’t.

I’ve kind of accepted that like my dad, we just have to wait for something to happen and that will set things in motion. My dad fell at home with Covid a year ago, went to the hospital, deteriorated significantly and never went back home.

luckily early this year I was able to get durable financial attorneys for both and am managing all finances. Also have health care proxy for mom as primary but not for dad, she is primary and brother and I are secondary.

This week was rough as mom kept text spamming me to add money to her no interest bank account (which probably has 5 years of expenses in it) and also demanding giving her names of people talking about her memory. Yesterday I kind of lashed back at her. Today I’m trying to patch things up.

I have the 36 hour book, only started reading it last night.

psg712 · December 7

That is all so tough. The distance makes it much harder. Is it feasible for you to go stay with your mom for about a week? At her house? That may give you a clearer picture of how she is functioning day to day. Make an appointment with her doctor for a day you can be with her. Give the doctor and staff a heads up about your concerns before she goes, and ask for a cognitive assessment without her finding out it was your suggestion.

You may also want to start checking on options for both parents in your town or your brother's. At some point, long distance caregiving may not fill their needs. Forcing a move is really hard but sometimes has to be done.

Tuco · December 7

https://alzconnected.org/discussion/comment/260140#Comment_260140

Thanks. When I do go it is sometimes for as much as 5 days. I am retired but I have 2 young adult kids at home, one special needs, the other with some issues, so going there much longer isn’t an option.

what’s weird is on a day to day basis she seems to function ok - she drives to my dads place and back, and easy 3 mile drive, and to the grocery store which is on the way. None of those are major throughways.

for the most part she just doesn’t want me in her medical business. She’s fine with me doing all finance stuff, but when I get into her medical stuff she gets her dander up - usually followed by BACK OFF!!!

At this point I really don’t see anything changing until something (bad ) happens

H1235 · December 7

If you have a healthcare proxy and financial poa you should be able to do what needs to be done. Since people with dementia don’t recognize their symptoms she is never going to agree to see her doctor about dementia symptoms (she doesn’t have any!). I would suggest getting her to the doctor for absolutely any reason you can. Tell her the doctors office called you because they couldn’t get a hold of her and she needs to be seen for a routine checkup (insurance requires it). You must be at the appointment, because even if the pcp refers her to a neurologist for further testing she is not going to tell you (because it’s not necessary), or she will forget. I would suggest you bring a note (patient portal works well also) to the pcp before the appointment explaining what is happening. I agree it’s time to start thinking about a facility for both parents near you. There can be a waiting list. I think if you haven’t stayed with her for any extended period of time you would probably be very surprised. Good luck. This is tough stuff.

ARIL · December 7

You have been given good advice already. This is all very hard stuff, we know. I tried to manage long-distance caregiving for several years, and I understand the frustrations and the sleepless nights. I too went for multi-day visits every few months—eventually every month—while working full time. It became impossible. My parent is now in a care facility near me, and the house was cleared and sold. It is still hard, but so much better.

There is a lot here. You will get to it all in time, but you will need to prioritize. Your father’s situation (“full code” is worrisome), your mother’s safety (can you get her to a doctor somehow?), and the finances look like the top priorities. People on this forum can provide support and good suggestions. We are with you.

SDianeL · December 8

welcome. So sorry about your parents. Your Mom has Anosognosia

Definition: A neurological symptom where a person is unaware of their deficits, such as memory loss, poor judgment, or impaired executive function, caused by damage to brain areas like the frontal lobes.
Not Just Denial: It's different from simple denial; the person genuinely doesn't perceive the change in their mental state or functioning, making it difficult to see they need help.

2 things I learned here: Never argue with someone with dementia and 2) you can’t reason with someone whose reasoner is broken. Your Mom will never agree to get help. You must make the decision for her. She should no longer be driving. Do whatever you have to to stop her. If she has an accident her insurance could refuse to pay and she could be sued and lose everything. She could hurt or kill herself or someone else. Long distance care is extremely difficult as you know with your Dad. We understand what you’re going through.

Tuco · December 8

Thanks for all of the thoughtful replies.

i don’t have a health care proxy for dad - at least not primary. It is secondary to mom, who probably isn’t capable of this, but apart from a court order I’m not sure what else I’m supposed to do. This coming week I’ll try to enlist the help of my dad’s facility new social worker starting this week. The prior one was not interested in intervening in any way and took a rigid stance that only my mom could make decisions.

I have spent a week there, several times. She’s functional, but it’s not optimal, and could change in a heartbeat.

Im not sure how insurance can refuse to pay if there is a car accident.

I’ve toured a nearby facility that would have been great for both, took her along 6 months ago, she was completely overwhelmed and just not interested. She wants to stay at home. Full stop. The only way that changes is if a government social worker were to force her. I’m not ready to pull that trigger and she’s not to that point yet. I scheduled a in home help service to visit and she made me cancel because the house was a mess (in her mind)

I’ve tried back channeling to her doctors, and mostly that goes nowhere, due to obvious privacy reasons. I could schedule an appointment but she would get angry and go online and cancel it. She has before.

I really feel like there’s little I can do right now. This week I alienated her between suggesting doctor visits and arguing about bank money so I’m trying to dig back out of that hole (unfortunately she seems to remember this). My brother while helpful and empathetic is not one to forcefully interject and cause any conflict, plus he has a full time job.

One of the stresses I feel is feedback that “you need to do something” when given legalities and everything else, there is only so much that I can do. I can’t force her to do anything, and it isn’t to the point that I want to get government agencies involved (as a father of a disabled young adult with guardianship and state programs, I’m well aware of this path)

I’ve been down this path with my dad and the only thing that changed anything was him getting Covid and falling and going to the hospital, and never coming back home.

psg712 · December 8

I feel for you. What you describe with your mom is truly one of the hardest stages. Your mom does still have agency and is fighting for her independence, although she needs more help than she realizes. It's so nerve-wracking waiting for the other shoe to drop. But you have the experience with your dad and with your adult child and understand your family's situation better than any of us can do.

I'm sorry if the feedback you've received adds stress to your situation. We want to offer ideas and support, understanding that each person's situation has its unique aspects. Take what is helpful for you and bypass what isn't. Please update us when you can … we do care.

Tuco · December 8

https://alzconnected.org/discussion/comment/260180#Comment_260180

thanks - I value all feedback. I can be argumentative…I wonder where that comes from?!!

I hope at least I can learn some lessons for myself if I’m lucky enough to live that long, because by nature I’d probably exactly the same.

Caring for parents - Long distance

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