Parent with rapidly developing dementia. What do we do?
October 9, 2020 11:18 AM Subscribe
We've only known something was wrong since March 2020, but the parent (70s) realized something was wrong May 2019. Things were stable until a week ago when they began to have hallucinations, paranoia, and anxiety, and their spouse is no longer comfortable leaving them alone.
They don't have an official diagnosis--they visited a neurologist in March who ruled out other causes for the initial symptom (progressive difficulty finding words) and have a follow up in a few weeks (I think to measure the decline and make an official diagnosis) that we are trying to move up.
It took a while for the immediate family to accept this was probably dementia--they originally blamed it on normal aging and/or alcohol abuse--including the spouse, so nothing has been done since March in terms of planning.
The parent and spouse made wills several years ago (using forms on the internet, I think mostly leaving everything to each other with some sentimental items going to the children) but no other legal documents. Parent has medicare as well as PPO insurance through spouse's work. The parent has no retirement savings; the children have some money but cost will be a factor for ongoing care.
Children are talking about family members taking shifts to watch parent, but this doesn't seem sustainable especially since there are young grandchildren who would need to tag along. There are also vastly different covid risk tolerances amongst the group which is causing friction (strict quarantine vs repeated high risk activity).
I am an in-law and am trying to gather resources and come up with a checklist of what needs to be done and which professionals we need to find. In addition to the neurologist, the children want to contact the primary care doctor to get anti-anxiety medicine. I think they also need an elder care attorney to set up power of attorney (or maybe guardianship/conservatorship at this point) and some sort of social worker who can tell them what care options are available for what cost.
Is that right? Anything else we should be looking into or doing? How do we find these professionals? Any specific recommendations (northern Virginia)?
They don't have an official diagnosis--they visited a neurologist in March who ruled out other causes for the initial symptom (progressive difficulty finding words) and have a follow up in a few weeks (I think to measure the decline and make an official diagnosis) that we are trying to move up.
It took a while for the immediate family to accept this was probably dementia--they originally blamed it on normal aging and/or alcohol abuse--including the spouse, so nothing has been done since March in terms of planning.
The parent and spouse made wills several years ago (using forms on the internet, I think mostly leaving everything to each other with some sentimental items going to the children) but no other legal documents. Parent has medicare as well as PPO insurance through spouse's work. The parent has no retirement savings; the children have some money but cost will be a factor for ongoing care.
Children are talking about family members taking shifts to watch parent, but this doesn't seem sustainable especially since there are young grandchildren who would need to tag along. There are also vastly different covid risk tolerances amongst the group which is causing friction (strict quarantine vs repeated high risk activity).
I am an in-law and am trying to gather resources and come up with a checklist of what needs to be done and which professionals we need to find. In addition to the neurologist, the children want to contact the primary care doctor to get anti-anxiety medicine. I think they also need an elder care attorney to set up power of attorney (or maybe guardianship/conservatorship at this point) and some sort of social worker who can tell them what care options are available for what cost.
Is that right? Anything else we should be looking into or doing? How do we find these professionals? Any specific recommendations (northern Virginia)?
I would strongly recommend connecting with your local Alzheimer's association, as they will be able to provide information on the "must do"s, but also the range of support options that will be available to you (homecare, respite, etc). I am in Canada so can't make specific recommendations, but to me it sounds like you've got the right professionals. Again I'd just advise a connection with the AA & looking into local support options. Also this may be something that you personally don't have control over, but if you can influence the folks providing care at all: DO NOT WAIT until everyone is in crisis before seeking support. This is such a common thing that caregivers do, and the earlier you can connect with resources that help the caregivers and person with dementia, the better off everyone is.
posted by DTMFA at 11:30 AM on October 9, 2020 [3 favorites]
posted by DTMFA at 11:30 AM on October 9, 2020 [3 favorites]
Best answer: Children are talking about family members taking shifts to watch parent, but this doesn't seem sustainable
Long term this is absolutely not sustainable. Care for an elderly patient with dementia is beyond the scope of family members taking turns.
My father had memory loss and dementia and eventually needed to go into a care facility full time. His sundowning and other needs were just too much for a home caretaker. I wish we'd moved him into the facility a bit earlier, honestly.
This was in Wisconsin and Medicare took care of everything. He had no assets to speak of at the time and it was fully covered. I can't say how this works in other states.
There are likely to be many memory care facilities near you. I would contact one and ask them for resources. Speak to someone who works with intake for patients, they can point you in the direction of community resources, etc.
If they are still deemed competent now is a good time to arrange guardianship. If similar to WI this will involve losing some rights / privileges including voting and ability to hold a driver's license. (Though, weirdly in WI, they can still have a fishing license.)
I've only been through this once but my advice is - don't plan for the parent's present condition, make plans with the expectation that they are going to continue to decline and what you will do when they do so through the various stages of dementia. Obviously it's not a uniform path, but when you talk to people who work with dementia patients they can likely give you a good idea where things are headed. When my father was starting to really decline the folks I spoke to were pretty much spot on with what the progression would look like and general time-frames.
Also big +1 to getting anti-anxiety meds. At least for my father they did help.
posted by jzb at 11:33 AM on October 9, 2020 [6 favorites]
Long term this is absolutely not sustainable. Care for an elderly patient with dementia is beyond the scope of family members taking turns.
My father had memory loss and dementia and eventually needed to go into a care facility full time. His sundowning and other needs were just too much for a home caretaker. I wish we'd moved him into the facility a bit earlier, honestly.
This was in Wisconsin and Medicare took care of everything. He had no assets to speak of at the time and it was fully covered. I can't say how this works in other states.
There are likely to be many memory care facilities near you. I would contact one and ask them for resources. Speak to someone who works with intake for patients, they can point you in the direction of community resources, etc.
If they are still deemed competent now is a good time to arrange guardianship. If similar to WI this will involve losing some rights / privileges including voting and ability to hold a driver's license. (Though, weirdly in WI, they can still have a fishing license.)
I've only been through this once but my advice is - don't plan for the parent's present condition, make plans with the expectation that they are going to continue to decline and what you will do when they do so through the various stages of dementia. Obviously it's not a uniform path, but when you talk to people who work with dementia patients they can likely give you a good idea where things are headed. When my father was starting to really decline the folks I spoke to were pretty much spot on with what the progression would look like and general time-frames.
Also big +1 to getting anti-anxiety meds. At least for my father they did help.
posted by jzb at 11:33 AM on October 9, 2020 [6 favorites]
Other people have great suggestions for the longer term but I also want to remind you that the emergency room is an option! The sick parent will be kept safe at the hospital, the caretaker spouse gets at least a short break, and often you can get connected to things like VNA and other palliative care (and nursing home/memory care facilities if necessary) more quickly directly from a hospital setting than from home.
If the caretaker spouse doesn't feel like they're able to safely care for the sick parent, they should at least keep (temporary) hospitalization on the table as an option. I know hospitals don't feel the absolute safest right now but that has to be weighed against a very real danger that a person with rapidly deteriorating mental state could hurt themself or others.
posted by mskyle at 11:42 AM on October 9, 2020 [1 favorite]
If the caretaker spouse doesn't feel like they're able to safely care for the sick parent, they should at least keep (temporary) hospitalization on the table as an option. I know hospitals don't feel the absolute safest right now but that has to be weighed against a very real danger that a person with rapidly deteriorating mental state could hurt themself or others.
posted by mskyle at 11:42 AM on October 9, 2020 [1 favorite]
Best answer: They need a doctor visit to make sure there isn't a hidden infection, like a UTI. A sudden shift from word-finding problems into paranoia and hallucinations isn't at all typical of early stage dementia and may well come from another, treatable condition - an infection can really escalate/change dementia symptoms. When there is a sudden turn for the worse, it's always worth a doctor's visit.
It's going to be a different situation if your relative has Alzheimer's with an atypical presentation, one of the variants of primary progressive aphasia or behavioral variant frontotemporal dementia - although they all end much the same, their courses vary a lot.
posted by Frowner at 11:46 AM on October 9, 2020 [30 favorites]
It's going to be a different situation if your relative has Alzheimer's with an atypical presentation, one of the variants of primary progressive aphasia or behavioral variant frontotemporal dementia - although they all end much the same, their courses vary a lot.
posted by Frowner at 11:46 AM on October 9, 2020 [30 favorites]
I was going to say what Frowner said - sudden onset of cognitive difficulties in the elderly is a hallmark symptom of a UTI. Definitely check for that first before you and your family start making big arrangements.
posted by keep it under cover at 12:01 PM on October 9, 2020 [9 favorites]
posted by keep it under cover at 12:01 PM on October 9, 2020 [9 favorites]
Best answer: Acute-onset psychosis requires an immediate trip to the doctor or ED to rule out medical conditions (infections, alcohol withdrawal, med side effects) that may be causing/worsening symptoms
Once stable, I would recommend a psychiatrist specialized in geriatrics to manage any psychotropics—not your PCP. Academic centers are a good place to start. Schedule the appt now as these specialists are in high demand and short supply. Expect a long wait.
IANYD
posted by namemeansgazelle at 12:05 PM on October 9, 2020 [7 favorites]
Once stable, I would recommend a psychiatrist specialized in geriatrics to manage any psychotropics—not your PCP. Academic centers are a good place to start. Schedule the appt now as these specialists are in high demand and short supply. Expect a long wait.
IANYD
posted by namemeansgazelle at 12:05 PM on October 9, 2020 [7 favorites]
IANAD, but a friend’s parent’s dementia was caused by hydrocephalus, which was completely treatable. Internet says this causes mild dementia, but this person had symptoms a lay person might describe as hallucinations or psychosis. A full medical workup is needed here.
posted by FencingGal at 12:10 PM on October 9, 2020 [2 favorites]
posted by FencingGal at 12:10 PM on October 9, 2020 [2 favorites]
Best answer: AARP/Alzheimer's Association Community Resource Finder database
I'm so sorry. Two things I wish my family had done early: hired professional caregivers to be in the house, while the patients had some capacity to incorporate new faces into the very necessary daily routines, and worked out legal matters. Maybe your family lawyer is a good resource, or maybe you'll want an elder law attorney.
Sort stuff like wills, policies, accounts, deeds, power of attorney... in my grandparents' case, it's 15+ years on and safe deposit box contents and life insurance policies are still turning up on state comptroller unclaimed-property sites. There's lingering internecine squabbling in the family over how the situation was handled, not that the experience has necessarily spurred everyone to get their own affairs in order since then (denial and avoidance are pretty strong in some people.) Good on you for addressing matters head-on.
If the expectation is that they'll be cared for in their home (or a relative's home) as long as possible, here are checklists for making that space safer.
Lastly, while your parent is seeing a neurologist, so I would hope the usual lower-level issues have been ruled out (UTIs, long-term exposure to low levels of carbon monoxide, vitamin malabsorption, etc.) (and you mention alcholism -- compromised liver function presenting as dementia happens), please check their heart and lung function, and triple-check any of their medications, new or recent, for averse side effects. Today, there's speculation that a series of small strokes (which necessitated a pacemaker, and ought to have been caught earlier) plus at least one inappropriate medication contributed significantly to my grandfather's decline in the last few years of his life. Best wishes to you and your family.
posted by Iris Gambol at 12:15 PM on October 9, 2020 [1 favorite]
I'm so sorry. Two things I wish my family had done early: hired professional caregivers to be in the house, while the patients had some capacity to incorporate new faces into the very necessary daily routines, and worked out legal matters. Maybe your family lawyer is a good resource, or maybe you'll want an elder law attorney.
Sort stuff like wills, policies, accounts, deeds, power of attorney... in my grandparents' case, it's 15+ years on and safe deposit box contents and life insurance policies are still turning up on state comptroller unclaimed-property sites. There's lingering internecine squabbling in the family over how the situation was handled, not that the experience has necessarily spurred everyone to get their own affairs in order since then (denial and avoidance are pretty strong in some people.) Good on you for addressing matters head-on.
If the expectation is that they'll be cared for in their home (or a relative's home) as long as possible, here are checklists for making that space safer.
Lastly, while your parent is seeing a neurologist, so I would hope the usual lower-level issues have been ruled out (UTIs, long-term exposure to low levels of carbon monoxide, vitamin malabsorption, etc.) (and you mention alcholism -- compromised liver function presenting as dementia happens), please check their heart and lung function, and triple-check any of their medications, new or recent, for averse side effects. Today, there's speculation that a series of small strokes (which necessitated a pacemaker, and ought to have been caught earlier) plus at least one inappropriate medication contributed significantly to my grandfather's decline in the last few years of his life. Best wishes to you and your family.
posted by Iris Gambol at 12:15 PM on October 9, 2020 [1 favorite]
Best answer: I would absolutely get them to an urgent care now, today, if a GP can't get them in that fast. UC should at least be able to do urine and basic bloodwork. (Given age and presentation, they might boot you straight to Emergency Room, except possibly with covid they will try to avoid doing so. You might call first.)
Something you especially risk with a silent infection is a sudden high fever and seizure, which will complicate everything else you need to get done dramatically. I know for the family this escalation probably is creating a lot of big feelings about the future, but they need to climb over them a minute and recognize there is a medical emergency they are ignoring.
posted by Lyn Never at 12:18 PM on October 9, 2020 [7 favorites]
Something you especially risk with a silent infection is a sudden high fever and seizure, which will complicate everything else you need to get done dramatically. I know for the family this escalation probably is creating a lot of big feelings about the future, but they need to climb over them a minute and recognize there is a medical emergency they are ignoring.
posted by Lyn Never at 12:18 PM on October 9, 2020 [7 favorites]
Best answer: I'm so sorry for your spouse and your family.
I agree with those who say acute increase in symptoms should be treated as an urgent medical concern. I'd also say get a phone call in to your local Alzheimer's Association as soon as possible; you should call the 24/7 Helpline at 800-272-3900. They can help you walk through the next steps and help you find the appropriate types of people to call, or make you an appointment for same with someone local via phone or video chat.
https://www.alz.org/nca should be their local chapter site, and the AARP/Alzheimer's Association community resource finder posted by Iris Gambol is also a good resource.
(severe alcohol abuse can be a cause of dementia, as well, so it's good to mention this to the neurologist and anyone else you work with through all of this).
posted by assenav at 1:13 PM on October 9, 2020 [1 favorite]
I agree with those who say acute increase in symptoms should be treated as an urgent medical concern. I'd also say get a phone call in to your local Alzheimer's Association as soon as possible; you should call the 24/7 Helpline at 800-272-3900. They can help you walk through the next steps and help you find the appropriate types of people to call, or make you an appointment for same with someone local via phone or video chat.
https://www.alz.org/nca should be their local chapter site, and the AARP/Alzheimer's Association community resource finder posted by Iris Gambol is also a good resource.
(severe alcohol abuse can be a cause of dementia, as well, so it's good to mention this to the neurologist and anyone else you work with through all of this).
posted by assenav at 1:13 PM on October 9, 2020 [1 favorite]
Yes, you need to disclose approximate alcohol consumption, and also if this uptick in symptoms might at all be concurrent with a sharp decrease in consumption (because they are too incapacitated to drink like they normally do) you NEED to tell the doctor this is the case and this situation has just gotten even more emergent. Abruptly stopping/reducing can kill someone, as can a sudden inability to metabolize alcohol like they did before, which could happen if they are experiencing organ failure. We had a crisis around this with a family member who suddenly developed a reduced swallowing capacity that meant they could not drink at their normal daily pace, and DTs manifest in paranoia, hallucinations, and other serious neurological symptoms that need to be medically managed.
Also, a doctor or nurse is going to ask the family member about their alcohol habits, and whoever family is in there with them should say nothing - let the person answer. Then provide the doctor with your actual estimate out of hearing of the family member, or hand them a post-it.
posted by Lyn Never at 1:46 PM on October 9, 2020
Also, a doctor or nurse is going to ask the family member about their alcohol habits, and whoever family is in there with them should say nothing - let the person answer. Then provide the doctor with your actual estimate out of hearing of the family member, or hand them a post-it.
posted by Lyn Never at 1:46 PM on October 9, 2020
Response by poster: Thank you all so far. I informed my spouse of the UTI possibility and they are working on getting parent tested.
To clarify about alcohol--parent is not alcoholic but alcoholism runs in the family so a few family members interpreted seeing parent with a glass of wine plus the speech issues and sundowning as a sign that parent had been drinking all day. Spouse has been able to confirm that parent is not drinking more than a glass or two of wine per day and that the problems do not correlate with alcohol consumption.
posted by jessica fletcher did it at 1:57 PM on October 9, 2020
To clarify about alcohol--parent is not alcoholic but alcoholism runs in the family so a few family members interpreted seeing parent with a glass of wine plus the speech issues and sundowning as a sign that parent had been drinking all day. Spouse has been able to confirm that parent is not drinking more than a glass or two of wine per day and that the problems do not correlate with alcohol consumption.
posted by jessica fletcher did it at 1:57 PM on October 9, 2020
In addition to the UTI sort of thing, you might want to look at B12 and folic acid. As people age, their ability to absorb B12 becomes less, and it can also cause problems. Maybe if they are checking for a UTI, they can include this in the panel. Lack of D can also cause problems.
posted by Marie Mon Dieu at 4:24 PM on October 9, 2020 [1 favorite]
posted by Marie Mon Dieu at 4:24 PM on October 9, 2020 [1 favorite]
UTI was my first thought, too.
Also, is she on any medications (blood pressure, etc.)? Missing dosages or accidentally doubling up can have dramatic effect.
posted by Kriesa at 6:22 AM on October 10, 2020
Also, is she on any medications (blood pressure, etc.)? Missing dosages or accidentally doubling up can have dramatic effect.
posted by Kriesa at 6:22 AM on October 10, 2020
This thread is closed to new comments.
posted by theora55 at 11:23 AM on October 9, 2020 [2 favorites]