Long Distance Mom has Dementia, and I am the only Child

I am responding mostly in solidarity, as an only child and POA with a full-time job who was managing a deteriorating situation occurring an eight-hour drive from me for several years. It became impossible. My parent is now in MC near me, and the house is sold.

You may find the Dementia Resources on this site to be helpful as you evaluate your circumstances. Whether you can manage with some in-home care versus AL depends on your mom’s current condition and the specifics of your situation. I went the in-home assistance route for a while; it felt like a stopgap and wasn’t nearly enough, but it was much better than it had been.

You may also find some good advice at your (or your mom’s) Area Agency on Aging. They can tell you about available resources. Your mom’s primary care doctor can also be helpful in evaluating your mom’s needs and abilities.

I wish you the best. This is a hard road.

@FFNovi

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Speaking as an only in similar circumstances, some thoughts.

My parents split the year between MD and FL (I'm in PA) in the early and middle stages of dementia. Mom was resistant to forcing an evaluation, so he was undiagnosed. Dad was paranoid and refused to create a trust or sign a POA. When mom ended up in critical condition in the hospital because dad was unable to recognize how sick she was, I finally got looped in as an emergency contact. It would be another 6 months of missteps leading to the other shoe dropping which forced their move which was less than ideal. I don't work, I am married to the most understanding man in the world and my kid was college-age so I didn't have the balancing act with which you are dealing, and it was still a lot.

Do you already have the legal documents to act on mom's behalf in terms of legal, financial and medical matters? It's not clear if you are on mom's checking account helping or have full POA status. If not, you'll need these asap while mom is still deemed competent to sign. Ideally these would be drafted by an elder law specialist who will also explain Medicaid in her state and planning for transition once assets are used up. If she already has a boilerplate POA off the internet, you'd want it vetted to make sure it allows you to do what you'll need to do going forward. If she can't or won't sign, you'll need to obtain guardianship.

You're going to need to move her closer to you. If funds were unlimited, you might be able to engage a Senior Care Manager to be your eyes and ears on the ground and help with placement when the time comes but you'd still be traveling to visit, at times with little notice as the disease progresses and emergencies arise. IMO, the POA needs to live close enough to the PWD to meet the ambulance as it arrives at the ED.

There are risks to kicking this can down the road. It is possible mom is showtiming when you visit for a weekend and reporting all manner of normal behavior when you aren't there. Dad did. He wove a narrative of days golfing, swimming and getting together with friends. It was all a delusion. When I packed up the FL house, neighbors came to ask after mom and reported that they had seen dad in several years. There could be an issue if someone reports her living situation to APS— say a neighbor she's had a spat with or one who is just generally worried about her living alone. You don't want APS stepping in especially if you're POA and have a legal obligation to look out for her welfare.

It might make sense to move her to your house under the guise of visiting the children to get a sense of how she's really doing. If you have the room, she might be OK with you and attending a day program for a time. From there, you could sell her home as POA and use those funds for a placement. Medicaid is her safety net. Many facilities operate under a business model of self-pay for 2-3 years before converting to a Medicaid bed. In some states that is AL, while in others (like mine) Medicaid only covers SNFs. Near me, it's only the fancy corporate facilities that don't take Medicaid— most, including some very nice ones, do.

HB

You need to move her before there is an accident or problem not after. If you wait it could be too late. As DPOA it is your responsibility to keep her safe. I have attached a copy of a staging tool. Notice it has rough age equivalents at each stage. Figure out what stage she is in and ask yourself if she is really able to care for herself at that age equivalence. Anosognosia is tough. My mom thinks she would be perfectly fine to live alone in her home. She also thinks if she can push he walker there is no reason she can’t push a lawnmower. Dementia is so much more than memory problems.Good luck.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf