Going Home.

BigBlueTruck

Mom is 87. I am her 60 year old son. She has been in our home since Thanksgiving. She is memory impaired. Family doctor refuses to be helpful. He tells her she has age related memory loss. Then tells her it happens to the best of us. Mom’s house is 180 miles away. She has ZERO support system. All the neighbors have home care aides themselves. She doesn’t eat unless it is prepared for her. She doesn’t bathe unless harassed for days. We go through the I want to go home conversation at least three times daily; as many as 20 times daily. She won’t talk to family on the phone. I have to call them and put her in the phone for the 5 minutes she talks to them. My 34 year old daughter doesn’t not want to move to stay with her. A relatively new thing is locking all the doors. I have to keep a key on me as I never know what door will be locked. She has locked herself out at home. I called a locksmith to go open the door. Gave a key to a neighbor.

Neurologist in the area are asking for diagnosis I don’t have one, again family doctor is of zero help.

Using the DBAT chart she has 15/22 in stage 4, and a few stage 5. She will not acknowledge any deficiency. She has told my wife and daughter that I am holding her hostage.

Today she told me she wants to go home to sit in her chair, watch TV until she dies in her home. How does one deal with that? She became very emotional (Rare for me to see.).

She sleeps between 10 & 13 hours a day. If left to her own devices, she eats Reese’s cups and ice cream. Any food I buy her she puts in the freezer waiting for me to visit before eating it. Used local delivery service to stock the house weekly.

Looking for opinions on whether home care (180 miles away) is an option or are we looking at a facility? Worried about the DBAT scoring.

Thanks.

KK

H1235

One of the most important questions- do you have DPOA? If not you need to se a lawyer. If she won’t sign you may need guardianship. Home care from a distance is going to be rough. You are going to have someone not show-then what? Often nighttime behaviors can be worse. An aid 24/7 is going to very expensive and finding someone to be there through the night might be difficult (if your area is rural). You may not think she needs 24/7 (and she may not today, but what about tomorrow) care. The idea is to act before there is an incident! Without 24/7 care you may end up with her burning the house down or wandering the streets in the middle of the night. As she progresses there will inevitably be emergency trips to the hospital. That’s going to be hard if you’re 180 miles away. Quality care workers may be tough to find. Will you end up with a 25 year old kid spending most of their time on their phone? Assisted living near you would offer companionship, real meals in a dining room, activities (at her level), a reason to get dressed in the morning and a new doctor . Most importantly you would be close by, not just for visits, but to monitor her care and her needs. I would think this would be easier on you as well. She may not be happy with this move, but she is not thinking clearly and you need to do what is best for her and her safety, even if she doesn’t like it. I hope you find a solution.
Some assisted living facilities have a waiting list.

cdgbdr

In my opinion, her home is not an option. This is so difficult for you and her doc is a waste of time. Could you obtain an evaluation by a geriatric providers? In any event, you will need DPOA to make arrangements for her. If you don’t have this, it can be much more difficult.

weareallunique

"She will not acknowledge any deficiency." Very common - called Anosognosia

Their brains tell them , they are fine, you've got the problem.

https://www.agingcare.com/topics/295/anosognosia

So you can't expect to convince or cajole them into any behavior based on acceptance or acknowledgment of the situation.

psg712

Agree with H1235. It was difficult to move my mother from her home in another state to a facility close to my home, but it was impossible to keep her safe in her own place anymore. Enough near- disasters ... I couldn't delay any longer and wait for a real tragedy to happen. I was thankful that she had established DPOA for me more than ten years earlier, enabling me to act on her behalf without her permission. I hope that you are able to get the documents that you need.

ARIL

Also agree with H1235. I tried to manage care from hundreds of miles away for too long, and it was impossibly hard. Moving my parent to a facility near me was challenging too but SUCH a good decision. I am sleeping again. I aspire to attend to my own health. My parent is safe and cared for, and I visit a lot, which helps the adjustment (even culture shock). Things are better for us all, and as the disease progresses, I feel so much more able to weather the storms.

I hope you can find some peace for everyone in your family.

harshedbuzz

@BigBlueTruck

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

A couple thoughts. Do you accompany her to the PCP's appointments or are you relying on her reporting that PCP has actually told her this is normal aging? Can you access the clinical notes via a patient portal to get a sense of whether the doc has done the preliminary testing to rule out another, perhaps treatable condition?

If you've not been to her doctor with her, that might be a way to get the diagnostic process started. You could contact the doctor ahead of time with a bulleted list of specific symptoms and ask for imaging, bloodwork, and an in-office screening like MMSE or MoCA. You need to be in the office, sitting in the doc's line-of-sight so you can confirm/deny what she gives as history. Ideally non-verbally.

Another option would be to skip that and schedule her an appointment with a new doc near you to establish care and get a referral to a neurologist or memory center for an evaluation. I'm confused by "neurologists asking for the diagnosis"— that's what they're for— to evaluated and diagnose.

The more critical piece, aside from ruling out something like a hormone or vitamin deficiency that could be treated and make a move unnecessary at this time, is the legal piece. Do you have a DPOA to act on her behalf? You'll also need HIPAA authorization; POAs generally cover that but medical people don't always understand that so having both is expedient. If not, that's a next step. If she refuses to cooperate, then you would need to obtain guardianship through the courts. That process nearly always includes a court-ordered evaluation for competency.

Generally speaking, moving the PWD local to the POA makes the most sense. You should be able to meet the ambulance as they pull into the ED when the falls and UTIs begin.

Most people here would frown on asking an adult child to abandon their lives doing whatever wherever (careers, relationships, planning for their own futures) to look after grandma. This isn't necessarily a short-term gig. You could be asking your daughter to put her life on hold until she's in her 40s.

Theoretically, a PWD can remain in their own home aging-in-place. The logistics are challenging. Especially from a distance. Firstly, she'd need a lot of money or a robust LTC policy to fund her care. Depending on the COL where she lives, an agency aide would run roughly $30-40/hour. You might find someone privately, but they're not much cheaper. You'd need to cover shifts for no-shows, illnesses and vacations/PTO. If you hire privately, you'll need to do background checks, payroll and make sure there's insurance in the event someone is injured working in the home.

One piece to this, is that while you're focusing on DBAT you need to keep in mind that you/your family are providing a great deal of scaffolding through the day to support her ability to function as well as she is right now. If she goes home without that level of support, things could look very different.

Also, with staging, the general rule of thumb is that if a PWD is considered to be in the latest stage for which that have any symptom/behavior. Families naturally tend to focus on the positive which can give a sense that a PWD is not as far in their disease progression.

Good luck. This is hard stuff.
HB