How to work the medical system for my far away mother?
July 17, 2017 6:18 PM Subscribe
My parents live a 3.5 hour flight away. My mother seems to be developing dementia (difficulty finding finding words, or completing complex tasks), which I diagnose as primary progressive aphasia She has also broken 3 bones in the past 6 months. My father seems to be helping, but bottom line, I don't trust either of them to be aggressive. I have medical power of attorney. How do I work the system?
So, for the dementia. My mother is socially anxious, and has always filled that with chatter (even or perhaps especially) if no one is listening. About a year ago, she started having trouble finding words, and now she hardly ever talks. She's also started forgetting things - her drivers license when they fly, booking a venue for a big thing she was working on. As an example, for Christmas she always has three cookbooks open, all items purchased, and a timeline for when to start items and put them in the oven. Last Christmas she put meat in the oven and wandered away. No sides, no timer. But the new simplicity in her language and reluctance to talk is the heartbreaking part.
With my "advanced" non-scientific googling skills, see primary progressive aphasia as the most likely diagnosis. I don't think it's Alzheimer's because the only personality change is talking less and being tentative because everything is harder.
She went to a neurologist last year and described her symptoms. So did my dad. (Honestly, I don't expect that he was able to articulate as clearly as I just did what's going on. )
She got an MRI, and it was generally inconclusive (some brain shrinkage, not atypical for age, not in the area associated with Alzheimers). Some assistant explained it to her, and that was that. [I have the report]
I'm going to visit in August, and will try to have an appointment with the neurologist scheduled then so I can go with my mother.
I have a medical power of attorney now, but I'm a little intimidated by calling the neurologist. Will she even call me back? Can I ask for an FMRI (which seems to be more specific because it checks what the brain is doing as the patient tries to answer questions)? What are the protocols. What else can I ask for? Is she being screwed because she's a Medicare patient? Should they buy supplemental insurance? I got the name of a local (to them) elder care lawyer from a reliable source. Should I try to meet wiht him while I'm visiting?
[I haven't broached the topic, but I know the long term solution is for them to move closer. They'll be moving from a paid-off house in a cheap part of the county to the unknown in an expensive part of the country. Our house is not suitable for additional members, especially ones who will have trouble with stairs in the near future.]
I'm finding it difficult to get started. I did find this old ask, and if the anon asker is still a MeFite, perhaps you could memail me.
Off topic, I got started on this experience by reading an article on how scientists uncovered Alzheimer disease in the novels of Agatha Christie & Iris Murdoch. (Posted on one of the never ending Potus 45 threads). Fascinating, and about my level of understanding of medicine.
So, for the dementia. My mother is socially anxious, and has always filled that with chatter (even or perhaps especially) if no one is listening. About a year ago, she started having trouble finding words, and now she hardly ever talks. She's also started forgetting things - her drivers license when they fly, booking a venue for a big thing she was working on. As an example, for Christmas she always has three cookbooks open, all items purchased, and a timeline for when to start items and put them in the oven. Last Christmas she put meat in the oven and wandered away. No sides, no timer. But the new simplicity in her language and reluctance to talk is the heartbreaking part.
With my "advanced" non-scientific googling skills, see primary progressive aphasia as the most likely diagnosis. I don't think it's Alzheimer's because the only personality change is talking less and being tentative because everything is harder.
She went to a neurologist last year and described her symptoms. So did my dad. (Honestly, I don't expect that he was able to articulate as clearly as I just did what's going on. )
She got an MRI, and it was generally inconclusive (some brain shrinkage, not atypical for age, not in the area associated with Alzheimers). Some assistant explained it to her, and that was that. [I have the report]
I'm going to visit in August, and will try to have an appointment with the neurologist scheduled then so I can go with my mother.
I have a medical power of attorney now, but I'm a little intimidated by calling the neurologist. Will she even call me back? Can I ask for an FMRI (which seems to be more specific because it checks what the brain is doing as the patient tries to answer questions)? What are the protocols. What else can I ask for? Is she being screwed because she's a Medicare patient? Should they buy supplemental insurance? I got the name of a local (to them) elder care lawyer from a reliable source. Should I try to meet wiht him while I'm visiting?
[I haven't broached the topic, but I know the long term solution is for them to move closer. They'll be moving from a paid-off house in a cheap part of the county to the unknown in an expensive part of the country. Our house is not suitable for additional members, especially ones who will have trouble with stairs in the near future.]
I'm finding it difficult to get started. I did find this old ask, and if the anon asker is still a MeFite, perhaps you could memail me.
Off topic, I got started on this experience by reading an article on how scientists uncovered Alzheimer disease in the novels of Agatha Christie & Iris Murdoch. (Posted on one of the never ending Potus 45 threads). Fascinating, and about my level of understanding of medicine.
Best answer: I will tell you what I tell most of my friends who are having to deal with parents with dementia: every single action my siblings and I took was 6 months later than we should have done it.
Moving can be a solution, but moving is hard on the demented. You haven't said how old your parents are, but you may want to consider carefully what sort of place you could move them to where they could stay in place even as they decline.
If your father has been the primary caregiver, he may be exhausted and just barely functioning himself -- and caregivers for those with dementia are at high risk of developing it themselves. It took things getting really bad for my dad to finally tell my brothers about what was going on.
Yes, you can talk to the neurologist, although she won't answer questions without sharing a copy of the MPOA. Other things you can do: track down copies of all their important financial documentation and get POAs for property as well as medical. Check in with their PCP to make sure he/she knows about your mother's condition. Find a social worker or geriatric care manager who can directly evaluate their needs and give you advice on next steps. If you can, get access to their finances so you can set up payment for some services when necessary.
Much of this is likely to be resisted by your parents, and it may be necessary to string them along a bit in order to take action.
Good luck.
posted by suelac at 10:19 PM on July 17, 2017 [1 favorite]
Moving can be a solution, but moving is hard on the demented. You haven't said how old your parents are, but you may want to consider carefully what sort of place you could move them to where they could stay in place even as they decline.
If your father has been the primary caregiver, he may be exhausted and just barely functioning himself -- and caregivers for those with dementia are at high risk of developing it themselves. It took things getting really bad for my dad to finally tell my brothers about what was going on.
Yes, you can talk to the neurologist, although she won't answer questions without sharing a copy of the MPOA. Other things you can do: track down copies of all their important financial documentation and get POAs for property as well as medical. Check in with their PCP to make sure he/she knows about your mother's condition. Find a social worker or geriatric care manager who can directly evaluate their needs and give you advice on next steps. If you can, get access to their finances so you can set up payment for some services when necessary.
Much of this is likely to be resisted by your parents, and it may be necessary to string them along a bit in order to take action.
Good luck.
posted by suelac at 10:19 PM on July 17, 2017 [1 favorite]
Best answer: If she's had 3 broken bones, she should be tested for Osteoporosis. Caltrate w/vitamin D or a generic has really helped with my mom.
posted by stray thoughts at 11:02 PM on July 17, 2017
posted by stray thoughts at 11:02 PM on July 17, 2017
People who know about this stuff will want to know the state (US) that your parents live in so they can give better advice, as I assume power of attorney and autonomy issues work differently in different states.
posted by lalochezia at 5:55 AM on July 18, 2017
posted by lalochezia at 5:55 AM on July 18, 2017
Best answer: I am so sorry you are in this situation. In our family, it was a fall and nasty broken ankle that uncovered showed us that the early dementia was worse than any of us had realized. It may have also accelerated the decline.
I don't mean to discourage you from seeking more medical advice (and others are describing details for what to do there) but the odds are very low that more medical advice will improve the situation. I think talking to the neurologist yourself is a good idea, but brace yourself that you're mostly going to be finding out how bad it is, and not getting cures or anything that will change the trajectory.
This is the time to be thinking about housing, discuss end of life directives, get financial POA, et cetera. It's important to prepare for the scenario where your mother is unable to live on her own and is wholly unable to advocate for herself. This is the scenario my family is in with our elderly relative, who unfortunately has steadily declined over several years to severe dementia while remaining physically healthy.
If your mother does move into an assisted living facility, do everything you can at the outset to be sure you'll be happy with the care she receives there. Moving later is extremely difficult. My mother has struggled mightily: as my relative has declined, she has received increasingly inadequate care at her facility, but it would be devastating to her to move her out of the place where she's been for several years. And so my mother resorts to things like folding towels in a specific unusual way so she can monitor whether my relative has been bathed by whether or not the towels have been moved, and so on. The worry takes a great toll on her.
posted by telepanda at 7:37 AM on July 18, 2017
I don't mean to discourage you from seeking more medical advice (and others are describing details for what to do there) but the odds are very low that more medical advice will improve the situation. I think talking to the neurologist yourself is a good idea, but brace yourself that you're mostly going to be finding out how bad it is, and not getting cures or anything that will change the trajectory.
This is the time to be thinking about housing, discuss end of life directives, get financial POA, et cetera. It's important to prepare for the scenario where your mother is unable to live on her own and is wholly unable to advocate for herself. This is the scenario my family is in with our elderly relative, who unfortunately has steadily declined over several years to severe dementia while remaining physically healthy.
If your mother does move into an assisted living facility, do everything you can at the outset to be sure you'll be happy with the care she receives there. Moving later is extremely difficult. My mother has struggled mightily: as my relative has declined, she has received increasingly inadequate care at her facility, but it would be devastating to her to move her out of the place where she's been for several years. And so my mother resorts to things like folding towels in a specific unusual way so she can monitor whether my relative has been bathed by whether or not the towels have been moved, and so on. The worry takes a great toll on her.
posted by telepanda at 7:37 AM on July 18, 2017
Best answer: Small suggestion: Does your parents' medical system have an online portal? I've given my daughter the log-in and password information for mine, so she has immediate access to all of my test results and records.
posted by FencingGal at 7:40 AM on July 18, 2017
posted by FencingGal at 7:40 AM on July 18, 2017
This thread is closed to new comments.
Full disclosure: I work at a skilled nursing facility. The vast majority of patients I have are on Medicare. With Medicare, the first 20 days that a person is in a rehab facility are coveted 100% and starting on day 21 it's 80%. The supplement kicks in the other 20%, so supplements are a good idea and in fact I've encouraged my own parents to go with MC+supplement rather than a replacement plan. In my specific setting Medicare is king and replacement insurance policies are not ideal. It's one thing when my team can set a discharge date going by Medicare guidelines, but I have patients all the time get cut off by insurance who would have not had a problem under Medicare getting more intense therapy for more time.
What I see a lot with patients are folks with mild to moderate dementia who are going along fine in their regular routine until something happens and they can't anymore. The fact that your mom has had so many broken bones is concerning. Are these from frequent falls?
I would also encourage you not to focus on an exact diagnosis, which may sound counter intuitive. Instead look at the accommodations she will need. What does your mom need to get through her day safely? Would a paid caregiver help? Would your parents even accept having help? Who is in the caretaker role? I see lots of couples where the woman continues caretaking work even when, like you've seen with leaving the oven on, it's much less safe.
You're doing a good thing by considering these issues now. Lots of my patients' children can't even bear to have this discussion and then people have to scramble to get plans in place when something really dire happens.
posted by We'll all float on okay at 7:34 PM on July 17, 2017 [7 favorites]