Remote home care for advanced dementia?

Beluga

I need feedback from anyone who has cared for their LO long distance. Mom fractured her hip 3 months ago which advanced her dementia significantly. She is now at even greater risk of falling again & is unable to do much without assistance. She uses a walker, doesn’t sleep much at night anymore, pees a ton at night, is restless & agitated & wants to go home after being under my care for 3 months. Her home is 2 hrs away. I don’t think it’s sustainable but am willing to try bringing her home if I can find 24 hr care. I will not be able to visit much though which makes me nervous. Anyone have experience with this?

towhee

Has she been home since she fractured her hip? Depending on the stage of her dementia she might not even recognize her home when you take her. People have done long distance caregiving, usually they use cameras, but rarely does it work for more than a short time. Caregivers don't show up, there are hospital trips etc. A live in caregiver sometimes works. If she is now in the middle stages I would think not twice but 3 times.

JeriLynn66

I’m sorry you and your Mom are going through this. It sounds as though she needs full time care and supervision.

Do you have her POA, able to act on her behalf? If not, I’d say it’s time. And, I’d be concerned about her safety from 2 hours away.

harshedbuzz

Running a single bed MCF from a distance has always been a challenge.

There are two approaches.

One would be to hire a live-in caregiver. This will require you finding a good one, training them on your needs for mom, doing payroll and insurance. If mom's not sleeping nights, you may have to hire an additional caregiver so the live-in can get some uninterrupted sleep. Your live-in person will need to have days off and vacations which you could cover yourself or by hiring from an agency.

The other option would be to hire a team to cover shifts-- typically 3 weekday and 2-3 each weekend day. You could hire through an agency which will handle scheduling, reference, insurance, etc. and should be able to get a warm body to cover no-shows and call-outs.

The costs of in-home care absent a LTC policy hare eye-watering. Depending on her finances, this may not be sustainable. Five years ago, dad's HHAs were a little over $30/hour weekday; weekends, overnights and holidays command more. The week has 168 hours in it.

HB

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Beluga

Yes I took her home for a week to see if she’d be ‘happier’ there and she did not initially recognize it. After day 3, it sunk in and by day 5, she did not want to leave. Took me 2 hrs of coaxing her into the car to bring her back to my house. I think ‘home’ is where her things are to her so maybe if I just move the things to a different place, then that’ll be home. No clue, as she had severe transfer trauma the 2 months after her hip fracture staying in 2 different places. Am trying to avoid another cognitive regression.

CaliforniaGirl-1

We tried to care for my LO long distance. I had a sibling local. It did not work out for us. We lurched from crisis to crisis, everyone involved in a constant state of worry and frustration.

In the end we got her into an AL and then a MC and then moved her near me.

@Victoria2020 is correct with saying, I want to go home really means I want to go back to a time when things were familiar and not so scary.

There is no one right answer, whatever works for you and your LO is the right answer. Don't leave yourself out of the equation And as my LO's doctor says - There are 2 of you in this and anything that doesn't take that into account isn't sustainable and not good for anyone. I don't want to end up with 2 patients here. )

towhee

Be careful with bringing her things to her. Often this is helpful, but occasionally it is not. Sometimes they are with it enough to recognize their things as theirs but also know they are not home, so it can be confusing and cause upset, or they realize that since their things are there they are not going home. Try bringing just a couple of easily transportable things first and be ready with a good fiblet in case of problems.