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A bit of history - my grandmother (Nana, 85, severe dementia, homebound and not too mobile in Arkansas) has lived with dementia for at least the past 10 or so years, but it is very bad now. Falls once every 1-2 weeks, forgets how to feed her cats/where her dishes are, thinks I am her husband sometimes. My grandfather took care of her up until he passed somewhat suddenly (from complications with a fall) in July. He rushed to start the process of putting her in the nursing home/rehab facility that he was put in, but didn't make it too far along before passing. Her 3 children (my mother, an aunt, and an uncle) have already passed away. My younger sister, older brother, and myself are the only grandchildren. Sister is in town, but not in a place to handle Nana outside of a few hours at a time (newborn child, anxiety issues, etc), and my brother lives in Florida, expecting for the first time as well, etc. Which leaves me, who is living with Nana (away from my wife and kids in Maine) since July. I have PoA and guardianship, and have been providing 24/7 care.


I am long past my wits end however, and *really* need to get back to my family, for both my benefit and Nanas. I have crushing indecisions about EoL care for her though. The options are down to placing her in a nursing home here in Arkansas, and moving back to Maine; continue letting her age in her own home, or bringing her with me to Maine and finding a place for her there. Each has it's pros and cons obviously, but I find that I have issues thinking about leaving her, and I don't know even logistically if it's going to be feasible to drive/fly her from Arkansas to Maine. She has trouble being in the car for longer than an hour or so, and is terrified of flying. Not to mention, she can barely walk more than 3 or 4 minutes at a time (in conjunction with always being fiercely independent, which really irritates her and leads to mood swings/paranoia/generally earlier sundowning)


To make a long story short (too late!), how have you all decided between what to do for end of life care? Has anyone else faced the troubles of caring for a loved one while family is out of state and hurting?

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Obviously this is a personal opinion but my choice would be to place her in memory care where she currently is. Your sister can visit and your brother is close enough that he could also visit on occasion. You need to return to your family. You can still manage to advocate for her remotely. Decisions can be made remotely as well.
Contact Hospice and get her on Hospice. As a matter of fact it might be easier to get her placed if you have the help of Hospice and their Social Worker. It will also be another level of care that grandma will get. And many Hospice use an App that allows for easy, secure communication. (The Hospice I used had Tap Cloud)

If you would feel more comfortable with grandma closer the trip north is possible. probably the best way would be to rent a camper van for the trip. And discuss with her doctor anti anxiety medications that would keep her calm. Again contact a Hospice in your area to help with placement so that she can be settled in right away.

Either choice expect grandma do decline with the move.
Make plans to clear the house and sell it ASAP and tidy up any financial aspects as well.
Difficult decision any way you choose. You have done what you can your priority is your family
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Sorry you're dealing with this. One doctor who has a Youtube video put it thusly when talking about those with Dementia. "The person is there in the flesh but what he/she was is gone" I had not heard of it described that way, but it made sense.

Sad as it is, your grandma is "gone", with only her flesh and bone physical presence left.

You can search your heart to find out what you feel is best.
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I’m so sorry to hear about your Nana. Would she qualify for assisted living/memory care? I also live in Arkansas and moved my mother into a nice assisted living facility which also has a memory care unit. She is now in the memory care area and is watched fairly closely to prevent falls, etc. They allow pets, so your Nana could possibly take one of her cats if she was in the assisted living area. They probably wouldn’t allow a pet in memory care due to increased risk of falls.
Best of luck…lots of hard decisions.
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She needs to stay in her state and be admitted to a NH for round the clock care.

Get a geriatric psychiatrist involved. Sometimes a low dose of antipyschotic medication can make a huge difference is how manageable an elder is.

There are no GOOD choices at some EOL points, only the least bad ones. The day I figured that out, I regained some semblance of normalcy.
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xandomize Nov 2021
"There are no GOOD choices at some EOL points, only the least bad ones."

This really rings true, and helps tremendously to know that I'm not alone in feeling this way. Thank you.
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I live in KY. My Mom is on Hospice and living in NH in N.C. I visit every month or so. It works. I call daily. Anything she needs, I order online and have delivered.
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Well, from all you say the option of letting her age in place in her own home is pretty much a death sentence. Winter is here. She could easily wander and perish in the snow or set her home on fire.
My option, my vote would go to placing her in her own town in a nursing home there, hope that your Sister can visit and update you, and that you may be able to visit if she is cognizant and wishes to see you, a few times a year.
You don't mention who her POA, guardian or conservator is? That person is the one who has the power. Is there a diagnosis already? If not, the cart is ahead of the horse.
I think from all you say about her inability to fly or to be in a car, that a car trip or plane trip is not an option.
I surely do wish you the very best. Sorry for the situation. Not everything has a very good answer and you are left with the best you are able to do.
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xandomize Nov 2021
Thank you for the input. I didn't mention, but remaining in-home would involve me remaining here with here. I am the PoA and guardian, so the decision is left to me, I am just finding it difficult to find the "right" course of action - and providing her daily care and keeping her calm during the day is taking so much effort (and time, she gets extremely paranoid and verbally abusive if I am on the phone and she doesn't know what its about. It makes it difficult to schedule her appointments when she thinks that she can do it her self. She doesn't remember that she has memory problems).

Thank you again for your response, your last line is oddly reassuring.
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Unless she has loads of money, you don't want to change states at this point.

From what you said, your sister will be able to go visit regularly to ensure that she is being cared for and the rest of you can visit periodically. So keeping her in her home town would be my choice.

I think that you should continue with grandpa's plans.

I am sorry for your loss. Your grandma is very blessed to have you to get her safely placed.

It is time for you to do so and get back to your family.
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xandomize Nov 2021
Thank you for your kind words. Having you all offer your guidance has really helped me hone in on getting her placed so that she can get the best care possible.
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I think you have answered your question.

A long car ride and flight are out of the question.

That leaves a local Arkansas nursing home.

Once she is settled, you will be relived of the duty and back with yoru family in Maine, You can visit on a semi regular basis, every few months.

You can order any things she may need online and have them shipped to her.
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Cover99 Nov 2021
What kind of "life" is that?
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