Long-distance Caregiver for mother with AZ

jgbw · January 27

Hello, my 80-year-old mother seems to be declining more rapidly this year (she was diagnosed in 2020 wit AZ). She lives in NYC and I moved to Boston,MA, in July from Los Angeles, CA, partly to be closer to her to make caregiving easier. She is very challenging, however, and I often feel lost as to what she needs because she does not tell me, she refuses to go to the dr unless I practically drag her, and she is no longer able to remember anything from day to day, how to shower, how to do her laundry. She just agreed two weeks ago to have an aide come in one day a week, but she apparently goes to the neighbors on her floor asking for food and toilet paper even though I send her groceries, etc., twice a month to make sure she has what she needs. I also have a tracker on her keys and she has not wandered outside of her building yet. She returned the laundry I had professionally cleaned for her and then accused them of stealing her clothes. I feel so anxious and depressed, I am exhasted all the time. That being said, I know she wants to stay in her apartment and I am trying to make that happen for her as long as possible. Is it still possible, tho? It feels more and more like she is in a dangerous situation.

jenspeed · January 28

This is really hard. I'm also caring from afar for a mom in NYC with AZ. I worked with a geriatric care manager to both provide some coaching for me and to set up resources for my mom. NYC has a ton of help that will come to the house. I now have an aide come in 4 days per week, which has been very helpful. I use freshdirect to send groceries every week. She has an occupational therapist who comes once a week and a nurse practitioner come every six weeks - all covered by medicare. The more systems you can set up, the easier it will eventually be for you. It'll be really hard at first as your mom won't like it - and once she settles in, it'll ease your anxiety a ton.

I've had the current care set up since last August. I know I need to get her care 7 days a week, and I'm not looking forward to the upset over introducing a second aide.

Feel free to DM me if you want any NYC specific resources.

jgbw · January 28

[Deleted User]

Jan 28, 2025

Hi Jean-
Sorry you had to find this group but glad you did. At 80 , 5 years after her Dx. sounds like your Mother has reached the end of her independent living and needs oversight - probably MC or higher end AL [ but there you could be facing a lot of add on charges].
You could try 24/7 caregivers in home but long distance , even with a good agency there will be days the caregiver is late etc. , it costs a lot more and your Mother can just throw them out.
This part of the website doesn't get as many eyes as the caregivers, or for parents so you can read or post there also.
https://alzconnected.org/group/32-new-caregiver-help
This section has a lot of good info.
Do you hold her legal powers - DPOA , health care proxy? If not try to get those , if not too late, to avoid a guardianship filing . Also, if you do place her having a elder law attorney check which state - your or hers is better for medicaid [long term care type] is helpful but having her close to you will help you manage and assist her in the future.
You can't expect her to understand, agree or remember the changes that need to be made in the immediate future to keep her safe. And that's the goal- safety. And sounds like she needs it now . She's shown she can't understand or take care of her needs or how the world functions around her.
It's really hard for us family members to see, and accept, but we need to work around them most of the time to get them safe.
[On wandering, she could be —and just leaves her apartment unlocked- because she doesn't remember she needs to]. At the stage she sounds like you can't accept what she says on the phone. She may say she ate but didn't, not because she's "lying"- she just can't process or remember. And yet , she still answers in that "Mom" voice, right?
And she may have
https://www.agingcare.com/topics/295/anosognosia
No stage is easy for caregivers but the unsettled early days are the worst - like juggling jello. Once you scope out and acquire the powers you need to get her settled for her safety it will be a bit easier - you'll have the agency or care home staff to monitor and recommend.

Thank you so much for this response, I really appreciate it.

jgbw · January 28

Thank you so much for this response!

H1235 · January 31

I think it’s probably not safe for her to live alone any longer. What would happen if she forgets she has something on the stove and starts a fire, would she know to leave or would she try to put it out?, it the fire alarm goes off will she know what it is? In my opinion you don’t want to wait til an accident happens to move her, she needs to make the move before. I understand she wants to stay in her apartment, most of us hope we never have to go to a facility either, but then here is reality. She is not capable of understanding that reality at this point, it’s up to you. It’s very hard.

Long-distance Caregiver for mother with AZ

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