Feeling overwhelmed with long distance care

GenaD

Hello - I am new here and am hoping to get some advice from other people who have been caring for someone with dementia. I am 38 and live in PA. My mom is 72 and lives in FL. I'm an only child and my dad passed away 10 years ago. My mom was diagnosed with MCI in 2019 and i suspect she has progressed to mild AD (waiting on cognitive testing). Right now I manage all her finances, arranging repairmen when necessary, making doctors appointments, flying down to take her to all appointments, etc. I have POA, am her healthcare surrogate, and I am an authorized user/trader on her bank account/investment portfolio. she has a will and a living will.

What else do i need to have in place? When do i decide she needs someone to come in to check on her? How do i discuss someone coming in daily to check on her? i know she will be extremely resistant because she doesn't think there's anything wrong other than "a few issues with short term memory" and she "feels fine." 

thank you in advance for your advice!

zauberflote

Hi GenaD and welcome to the best little club you never wanted to join. I am so sorry your mom and you are dealing with this. I am 70, and my kids are in mid-30's, so it hits home. 

First thing many here will advise is to have all of your mom's legal stuff gone over by a Certified Elder Law Attorney (CELA) in Florida. You can find one at nelf.org. 

As to getting help in and her being resistant, it is very possibly caused by anosognosia, the inability to realize anything is wrong with one. I imagine she'd feel about the same as you would if someone told you that you have to have someone in your house with you to help. You may have to visit for an extended period to introduce a person as something non-threatening so mom will be less resistant. There are stories here of PWDs firing the help, and if no-one else is in the house, the caregiver has to leave. 

Something to ponder-- what plans has she made for this last season of her life? You do have POA, and there may come a time when you have to take over. Perhaps one of you will move, so you are both jn the same town. Perhaps she must eventually go to assisted living (like, right now would be a good time), and eventually memory care will have to be chosen, unless you are committed to keeping her yourself. All of these scenarios are common on the boards here. 

My personal feeling is that you are too early in your working life to throw it over for mom. You have thirty more years of working to do, to assure your own old age security. I am not not not advising anything, just thinking out loud as I would to my kids if they proposed to keep me. 

Others will come along, most of them better organized than I am-- it's very supportive here!

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mommyandme (m&m)

My brother and I did long distance care for almost two years. My mother also lived alone.  We started with care coming in split shifts, 3 hrs in the morning and evening to make sure meds, bathing, eating and dressing etc were taken care of. Then that went to two 4 hour shifts.  Eventually we needed 24/7 care so while we got that set up we installed cameras everywhere  except the bathrooms.  Still use them today. She had a few great neighbors that we could call, and did, which helped a lot.  She’d lived there for 60 yrs after all.  Then we got 24/7 caregivers in which lasted about six months. It was all quite difficult to manage from afar. Thank goodness for my friends and my MIL that helped fill in the gaps.  Thinking back now, it was soooo hard. Two and a half years ago we moved mom and her two cats near me.  Now I’m her primary caregiver.  

I agree that you need to take a good chunk of time to stay with her to really assess her living situation.  It was only my brother seeing how dirty she and her house was which alerted us that she needed help.  She was still driving too, OMG!  

Long distance caregiving is really hard and I had a sibling helping me. I hope you can get some help in (and cameras) for at least an extra set of eyes. Our caregivers helped inform us of how she was coping too.  

I’m really sorry that you’re on this journey, but welcome to the forum. 

HollyBerry

mmy mom had a stroke and ended up in AL 45 minutes from my brother and 1500 miles from me. 2 years later, my brother's wife took her dream job in Canada. We did distance and long weekend visits for a couple years until it became clear that if she was going to move closer to me, it needed to happen soon. If I were in your shoes, I'd be looking for a continuum of care facility near your home and job,where she can live somewhat independently now but have supports available for later.  If you can do it soon, she might buy in.

harshedbuzz

GenaD wrote:

Hello - I am new here and am hoping to get some advice from other people who have been caring for someone with dementia. I am 38 and live in PA. My mom is 72 and lives in FL. I'm an only child and my dad passed away 10 years ago. My mom was diagnosed with MCI in 2019 and i suspect she has progressed to mild AD (waiting on cognitive testing).

Hi and welcome.

It is very likely that her cognition has worsened in the time since she was given the MCI diagnosis. This is especially likely given that you noticed symptoms well before she turned 70 which is the cut-off for early-onset which tends to progress more quickly.

Right now I manage all her finances, arranging repairmen when necessary, making doctors appointments, flying down to take her to all appointments, etc. I have POA, am her healthcare surrogate, and I am an authorized user/trader on her bank account/investment portfolio. she has a will and a living will.

This is all great. Is the POA durable/springing? Will it allow you to make decisions on her behalf if she becomes incapacitated? Do you need medical professionals to attest to her capacity? 

Going forward, it probably is not practical for your mom to live so far away. In your shoes-- and I was in a similar situation-- I would move mom closer to you now. My parents used to split the year between FL and MD and as their surviving child, I made a trip from PA to MD monthly to check in and at least once down to Florida unless there was an emergency. Dad was as yet undiagnosed, but it wasn't safe for them to be so far away. While mom kept a good eye of dad, he was unable to reciprocate and she nearly died on his watch as he was unable to recognize how sick she was or advocate for her care. When the hospital called me as an emergency contact, it was a real scramble to line up a flight from PHL to MCO Presidents weekend. I ended up going through Miami via Atlanta. 

In addition to needing them to move back to where I could have an eye on them, I wanted them out of Florida as there was a potential for dad to burn through their savings (He'd already day-traded away $350K earlier in the disease because mom wouldn't shut down his computer access) with needed care. Medicaid is better in PA, although it does not fund MC-- only a SNF. 

Depending on where your mom is in terms of actual progression, it might make sense to buy into a CCRC that offers a continuum of care. 

What else do i need to have in place?

In your shoes, I would find a MCF and a SNF in both places that meets your standards. Things could change rapidly and cause a need for a safe place to park her while you sort out the details. And if she has an accident or qualifying hospitalization, you need to know which SNF you prefer for her discharge planning. 

When do i decide she needs someone to come in to check on her?

I know you're waiting on testing, but TBH, you are the best judge of when it's time. It isn't always the case that a medical professional will say a PWD needs full-time supervision or ban driving.

It's best to collect information by staying with your mom for several days to get a real sense of how she's functioning. If she drives, is the car maintained? Is it covered with dents? Is the food in the house fresh or out-of-code? Is the house clean and tidy? Is she clean and fresh-smelling? 

Unfortunately, sometimes family thinks a PWD is OK and only realizes they aren't in retrospect. Like if she gets lost driving and turns up in another state. Or has a kitchen fire? Or wanders into a neighbor's home? Sometimes APS is involved.

How do i discuss someone coming in daily to check on her? i know she will be extremely resistant because she doesn't think there's anything wrong other than "a few issues with short term memory" and she "feels fine." 

She likely has anosognosia and thinks she's fine. There is no reasoning or arguing this. She can't recognize all of the ways in which, aside from memory, her brain is no longer working. If you are going to introduce an aide, it's best to do so with a fiblet she might accept. Perhaps the person is a friend of yours checking in. Maybe the person is a cleaner because she deserves to not have to clean house anymore. Or maybe her doctor ordered some help in the house for some reason unrelated to her memory. Maybe it's a free service for seniors as part of Medicare.  

That said, I would create a story now to get her to PA- perhaps she could come for Thanksgiving to see your new kitchen or help you make dinner. Then you can postpone her return-- maybe the weather is too bad to travel or her house is being tented for termites and it isn't safe to stay there. You could then move her into a CCRC or setting appropriate to her needs now calling it a senior hotel and deal with her house and stuff after she's safely moved. 

thank you in advance for your advice!

Elliern

We and friends have similar situations.   My suggestion would be you have your mom move home with you or at least close by. We plan to move in with our daughter and son-in-law in a few months because of my husband’s Alzheimer’s. Many of our friends are also moving back to be closer to family because they were simply too far away to be of help in an emergency. We all know we are getting older, even your mom. While we don’t want to leave our homes and friends most of us know when it’s too much for our children to handle when we are not close by. Maybe try explaining to your mom that you are concerned with her being so far away you can’t be there whenever she needs help.   But if she is living in an assisted living type of facility then it might be best for her to stay there.