Long-distance Caregiver for mother with AZ

jgbw

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

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

https://alzconnected.org/discussion/comment/235145#Comment_235145

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

jgbw

Thank you so much for this response!

H1235

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.

amdenny4702

I was in the same boat a couple of weeks ago, when my father was admitted to the hospital for a heart issue one morning. I continued to believe that I could manage all of his life from a distance, when I had no idea what his daily routines were devolving into. When he was admitted, it was obvious to all the hospital staff that he should not be living alone as he was showing similar symptoms to your mother. I had no idea all of the other things that were going on that no one told me about until I began searching for a memory care facility for him to live in. The hospital visit made it easy for us to transition him into memory care as we told him it was to rehab for his heart issues. It has been difficult emotionally for me, but after realizing the delusions were so bad, I now realize that he is safe from wandering, he's getting 3 meals daily, and he is taking his meds on a regular schedule as well as getting more regular, positive community interaction. If you don't have it, I'd work on getting your POAs in place and begin looking for a place that might be able to care for her that would be safe and remove the worry on your mind. Praying for you both!

ARIL

This situation sounds tough, and many aspects if it feel familiar. I agree with others that her staying at home seems unsafe and unrealistic. I also know a lot about feeling anxious, worried, and sleepless. I did it for a few years, long distance with endless trips back and forth and endless time on the phone in between. My parent is now in a facility near me, and—wonder of wonders—I can sleep again. It is still hard—this disease is horrible—but it is WAY easier for me and better for everyone.

And really expensive, but that’s a different topic.

eaglemom

I was just checking to see how your mom was doing? Did you end up moving her? Let us know.

eagle