Early dementia with aging parent
April 8, 2023 7:30 AM Subscribe
How to deal with elderly parent showing signs of dementia but refusing to acknowledge it or to seek any care for it?
My mom is 77 and in great physical health. Over the last few years though, she's definitely been suffering from a cognitive decline and relatives who hadn't seen her in a couple years are visiting and pulled my sister aside and rang the alarm saying how stunning the difference is. Of course my sister and I have only been seeing it happen incrementally and initially attributed some of her behaviors to her lifelong anxiety which has been the source of strain between us and our mother and have generally gone ignored for the sake of peace, but we are now aware that we can't just keep putting off some kind of care.
She will ask the same question multiple times over the course of just minutes. She gets very frustrated and overwhelmed by simple tasks that used to cause her no trouble in the past (like replying to an email). She can't remember simple details (like dates and appointments) that she used to have no problem with, even when she has written them down because she doesn't remember to look at her calendar. Other things like this. Currently nothing she does puts her safety at risk (though her impatience/compulsion has caused her to run red lights or answer texts while driving), and we'd like to do what we can now to prolong the time before we get to that point.
Her reactions when these behaviors are called out are very disproportionate and childlike, blaming 'stress' [which is mostly due to her own anxiety, not any environmental factors as she is very comfortable and otherwise unburdened] and then trying to turn it around as if we are attacking her. These overly-emotional responses are not her usual way of acting, and they are getting worse.
We have tried to have calm, direct, unemotional conversations with her to ask that she at least talk to her doctor to seek some kind of evaluation, even if no intervention is currently needed, just to get a conversation going. She refuses to acknowledge that there is even an issue (again leaning on we are just 'being mean' to her or 'she's been under a lot of stress'). She lives alone but has a partner of almost a decade who she is with many days out of the week who has also noticed the decline and has also tried to talk to her about it, but backed down when it similarly wasn't well received. We have all tried talking to her as a group but she either shuts down emotionally and won't engage or borders on hysterical and spins out, and then forgets the conversation ever happened.
So my question is mostly how do we get her to talk to a doctor about this? My sister (she's local to my mom, I am not) has medical power of attorney in case of incapacitation, but we aren't there yet thankfully. Can my sister call my mom's doctor to talk about the issue and get a referral? At the very least we'd love to get a baseline on where she is so that we can monitor her and get information on when intervention is needed. We really just aren't sure about next steps regarding getting our mother care and would appreciate any suggestions. She lives in North Carolina (Asheville) if that is relevant at all.
Thanks!
My mom is 77 and in great physical health. Over the last few years though, she's definitely been suffering from a cognitive decline and relatives who hadn't seen her in a couple years are visiting and pulled my sister aside and rang the alarm saying how stunning the difference is. Of course my sister and I have only been seeing it happen incrementally and initially attributed some of her behaviors to her lifelong anxiety which has been the source of strain between us and our mother and have generally gone ignored for the sake of peace, but we are now aware that we can't just keep putting off some kind of care.
She will ask the same question multiple times over the course of just minutes. She gets very frustrated and overwhelmed by simple tasks that used to cause her no trouble in the past (like replying to an email). She can't remember simple details (like dates and appointments) that she used to have no problem with, even when she has written them down because she doesn't remember to look at her calendar. Other things like this. Currently nothing she does puts her safety at risk (though her impatience/compulsion has caused her to run red lights or answer texts while driving), and we'd like to do what we can now to prolong the time before we get to that point.
Her reactions when these behaviors are called out are very disproportionate and childlike, blaming 'stress' [which is mostly due to her own anxiety, not any environmental factors as she is very comfortable and otherwise unburdened] and then trying to turn it around as if we are attacking her. These overly-emotional responses are not her usual way of acting, and they are getting worse.
We have tried to have calm, direct, unemotional conversations with her to ask that she at least talk to her doctor to seek some kind of evaluation, even if no intervention is currently needed, just to get a conversation going. She refuses to acknowledge that there is even an issue (again leaning on we are just 'being mean' to her or 'she's been under a lot of stress'). She lives alone but has a partner of almost a decade who she is with many days out of the week who has also noticed the decline and has also tried to talk to her about it, but backed down when it similarly wasn't well received. We have all tried talking to her as a group but she either shuts down emotionally and won't engage or borders on hysterical and spins out, and then forgets the conversation ever happened.
So my question is mostly how do we get her to talk to a doctor about this? My sister (she's local to my mom, I am not) has medical power of attorney in case of incapacitation, but we aren't there yet thankfully. Can my sister call my mom's doctor to talk about the issue and get a referral? At the very least we'd love to get a baseline on where she is so that we can monitor her and get information on when intervention is needed. We really just aren't sure about next steps regarding getting our mother care and would appreciate any suggestions. She lives in North Carolina (Asheville) if that is relevant at all.
Thanks!
This is super hard to go through and you have my sympathies. My mom had this issue with my dad when he began exhibiting signs of dementia and it was really hard to get him to go to the doctor to get it checked out, not least because he had no patience to actually wait in a doctor's office for the doctor to see him to even begin the diagnosis conversation.
You'll probably have to go about this less directly if you are to have success, so pitching it as a regular checkup to ensure you are on top of anything age-related is a good idea, if she is open to that, without raising specific issues - even better if your sister can get the doctor's office to phone your mom to get that appointment set up so that it seems like it's just a regular routine visit, and then your sister should also have the appointment information to make sure she gets there. I'm not sure of the details of American health care system rules, but it seems reasonable that if one of you were to phone the doctor's office to raise this and ask them to help with that step it shouldn't violate any privacy issues and I suspect the doctor's office would be happy to help. The good news (sort of) is that for any referrals/follow-ups, your mother probably won't remember what they are, and will be open to going to an appointment if you are there to remind and take her to them.
That said, if you are pretty sure of what is going on, a diagnosis isn't totally essential because you can apply strategies for working with people with dementia even without a diagnosis. There aren't a lot of medications that do much for dementia itself and most other medications prescribed help deal with the comorbid conditions, like anxiety and depression, that present themselves in a person with dementia. If you really can't move her forward on a dementia diagnosis, just move to the next step and start working with her like she has dementia.
In addition to the above, you should look into getting her driver's license taken away. She could kill someone or herself - you could do this by anonymously reporting her to the DMV so she has to go in for re-testing. This might automatically be triggered by the doctor if you can get her there; this is how my father's license was (mercifully; oy, was he a terrible driver near the end of his licensed life) taken away.
posted by urbanlenny at 8:04 AM on April 8, 2023 [7 favorites]
You'll probably have to go about this less directly if you are to have success, so pitching it as a regular checkup to ensure you are on top of anything age-related is a good idea, if she is open to that, without raising specific issues - even better if your sister can get the doctor's office to phone your mom to get that appointment set up so that it seems like it's just a regular routine visit, and then your sister should also have the appointment information to make sure she gets there. I'm not sure of the details of American health care system rules, but it seems reasonable that if one of you were to phone the doctor's office to raise this and ask them to help with that step it shouldn't violate any privacy issues and I suspect the doctor's office would be happy to help. The good news (sort of) is that for any referrals/follow-ups, your mother probably won't remember what they are, and will be open to going to an appointment if you are there to remind and take her to them.
That said, if you are pretty sure of what is going on, a diagnosis isn't totally essential because you can apply strategies for working with people with dementia even without a diagnosis. There aren't a lot of medications that do much for dementia itself and most other medications prescribed help deal with the comorbid conditions, like anxiety and depression, that present themselves in a person with dementia. If you really can't move her forward on a dementia diagnosis, just move to the next step and start working with her like she has dementia.
In addition to the above, you should look into getting her driver's license taken away. She could kill someone or herself - you could do this by anonymously reporting her to the DMV so she has to go in for re-testing. This might automatically be triggered by the doctor if you can get her there; this is how my father's license was (mercifully; oy, was he a terrible driver near the end of his licensed life) taken away.
posted by urbanlenny at 8:04 AM on April 8, 2023 [7 favorites]
Response by poster: No we don't have a HIPAA release, but we aren't actually trying to get her doctors to tell us anything so much as we are just trying to get her care. Maybe we can try to get that though. We don't have access to any portals, not that she is actively hiding that info from us, but she doesn't see why it would be necessary (unable to acknowledge) and then we go down that road again and nothing is accomplished.
She has never acknowledged her anxiety, she's not really a big believer in 'mental health' to begin with, which was fun as a depressed teenager, but I digress. We have tried couching everything behind her desire to 'not be a burden' and saying 'this is just normal senior care and being preventative' but she still shuts down and promptly forgets those conversations and doesn't take any action.
I think we are past the point of talking her into it, and trying to figure out what actions outside of her cooperation we can actually/legally take. We do think she might listen to a doctor if we could get her to see someone who will act on this specifically (her anxiety has always led her to copiously following doctors' orders), but she won't be the one to make an appointment at all. She is very on top of her physical health, goes and gets check ups all the time, but her cognitive decline wouldn't be readily apparent in a 5 minute interaction necessarily. It takes sustained contact to really recognize it.
And I get her driving is unsafe (I have taken her phone away when she's driving with me and she freaks out), but she would easily pass a drivers exam I believe. She can contain her compulsive behavior somewhat if she needs to. She still follows all the rules of the road unless she thinks she can get away with it otherwise.
posted by greta simone at 8:05 AM on April 8, 2023
She has never acknowledged her anxiety, she's not really a big believer in 'mental health' to begin with, which was fun as a depressed teenager, but I digress. We have tried couching everything behind her desire to 'not be a burden' and saying 'this is just normal senior care and being preventative' but she still shuts down and promptly forgets those conversations and doesn't take any action.
I think we are past the point of talking her into it, and trying to figure out what actions outside of her cooperation we can actually/legally take. We do think she might listen to a doctor if we could get her to see someone who will act on this specifically (her anxiety has always led her to copiously following doctors' orders), but she won't be the one to make an appointment at all. She is very on top of her physical health, goes and gets check ups all the time, but her cognitive decline wouldn't be readily apparent in a 5 minute interaction necessarily. It takes sustained contact to really recognize it.
And I get her driving is unsafe (I have taken her phone away when she's driving with me and she freaks out), but she would easily pass a drivers exam I believe. She can contain her compulsive behavior somewhat if she needs to. She still follows all the rules of the road unless she thinks she can get away with it otherwise.
posted by greta simone at 8:05 AM on April 8, 2023
I really do want to reiterate that she is absolutely putting her life and the life of others in danger by running red lights. That is not something to brush off. It’s a bad way to die.
posted by showbiz_liz at 8:29 AM on April 8, 2023 [26 favorites]
posted by showbiz_liz at 8:29 AM on April 8, 2023 [26 favorites]
FYI, I listen to The Brain Health Revolution Podcast, which is by two neurologists, and one of them has said more than once that when he diagnoses a patient with dementia, he is legally required to take that person's driver's license away, so being able to pass a driving test may not matter. I don't know if he's referring to a specific kind of dementia or level of diagnosis. He is in California.
This is a very hard situation. My aunt had dementia and avoided doctors as much as possible. She was only diagnosed because she was hospitalized for something else and they did an assessment. If a person is functioning, there is often not much you can do but wait for it to get worse.
I would also add that I'm an older person with a serious illness, and the absolute worst thing is talking to my kids about it because there is just a natural desire to protect your children. I struggle a lot with how much to even tell them, though one has access to my online portal (I have asked her to only look at my blood tests though, which monitor my illness - and I have no doubt that she's sticking with that). I know you feel that you're being rational and calm with her, and you've referred to her reactions as "overly emotional," but really, when facing a possible dementia diagnosis, there's no such thing. The prospect of losing your mind is huge - probably worse than terminal cancer for most people. It's clear that you have the best intentions here, but it concerns me that you think an "unemotional" conversation is even possible.
posted by FencingGal at 8:29 AM on April 8, 2023 [5 favorites]
This is a very hard situation. My aunt had dementia and avoided doctors as much as possible. She was only diagnosed because she was hospitalized for something else and they did an assessment. If a person is functioning, there is often not much you can do but wait for it to get worse.
I would also add that I'm an older person with a serious illness, and the absolute worst thing is talking to my kids about it because there is just a natural desire to protect your children. I struggle a lot with how much to even tell them, though one has access to my online portal (I have asked her to only look at my blood tests though, which monitor my illness - and I have no doubt that she's sticking with that). I know you feel that you're being rational and calm with her, and you've referred to her reactions as "overly emotional," but really, when facing a possible dementia diagnosis, there's no such thing. The prospect of losing your mind is huge - probably worse than terminal cancer for most people. It's clear that you have the best intentions here, but it concerns me that you think an "unemotional" conversation is even possible.
posted by FencingGal at 8:29 AM on April 8, 2023 [5 favorites]
You may never convince her, and it could get very unpleasant. All you can do is prepare as much as possible for a series of plateaus that will require different approaches. My mom went from independent living to being non-communicative and wheel chair bound within 2.5 years. It is different with everyone, but the downward process requires quick adaptation...it becomes more about "How" vs "Why"! Best of luck, and be sure to take care of yourself during this sad time.
posted by lobstah at 8:34 AM on April 8, 2023 [1 favorite]
posted by lobstah at 8:34 AM on April 8, 2023 [1 favorite]
Assuming she's using Medicare, you could encourage her to get an appointment for a Medicare Wellness Annual visit. Part of it is a dementia screening but it's also just a general check on medical history and preventative screenings. It's not a physical exam so it might be less intimidating and possibly you can sell it as a paperwork drill to make sure everything is up to date? It would also be with her normal PCM (assuming she has one).
Depending on how tricky you're willing to be, you could make the appointment for her and sell it as something mandatory for Medicare.
posted by macfly at 8:40 AM on April 8, 2023 [1 favorite]
Depending on how tricky you're willing to be, you could make the appointment for her and sell it as something mandatory for Medicare.
posted by macfly at 8:40 AM on April 8, 2023 [1 favorite]
I know from personal experience how hard this is, and I'm sorry you're dealing with it.
Caveat: I live in Canada; things may work differently here.
We were able to get my dad to agree to give Power of Attorney to a family member who lives nearby by telling him it's "for later" or "just in case." Although he was already admitting to memory problems sometimes, he would then forget and start denying it again. We just talked about "What if" scenarios (you have a stroke, heart attack, in an accident) and said he should decide who he wants in charge now while he still can. It gave him a feeling of having control over his own affairs.
That was a few years ago. FYI, the PoA process is now underway and it is very long -- it takes many appointments with banks, doctors, lawyers, etc to get full control of someone's finances. It's been a year and counting. So it's best to start early if possible.
Before the PoA process, when my dad's capacities were similar to what you've described with your mum (he was in his late 70s), my dad's doctor was unwilling to talk to us kids. After a lot of pushing, we got them to agree just to listen to information we were providing about dad's changing abilities. All they would agree to is asking him some questions the next time he came in for a prescription renewal. That happened but it took about two years before he saw the doc and got the required follow-up with a gerontologist last week. Now it's back to the family doc to see if we can get him declared incompetent.
Best of luck to you and your family.
posted by Frenchy67 at 9:17 AM on April 8, 2023
Caveat: I live in Canada; things may work differently here.
We were able to get my dad to agree to give Power of Attorney to a family member who lives nearby by telling him it's "for later" or "just in case." Although he was already admitting to memory problems sometimes, he would then forget and start denying it again. We just talked about "What if" scenarios (you have a stroke, heart attack, in an accident) and said he should decide who he wants in charge now while he still can. It gave him a feeling of having control over his own affairs.
That was a few years ago. FYI, the PoA process is now underway and it is very long -- it takes many appointments with banks, doctors, lawyers, etc to get full control of someone's finances. It's been a year and counting. So it's best to start early if possible.
Before the PoA process, when my dad's capacities were similar to what you've described with your mum (he was in his late 70s), my dad's doctor was unwilling to talk to us kids. After a lot of pushing, we got them to agree just to listen to information we were providing about dad's changing abilities. All they would agree to is asking him some questions the next time he came in for a prescription renewal. That happened but it took about two years before he saw the doc and got the required follow-up with a gerontologist last week. Now it's back to the family doc to see if we can get him declared incompetent.
Best of luck to you and your family.
posted by Frenchy67 at 9:17 AM on April 8, 2023
It may very well be dementia but it may be something else that is actually treatable. I felt like I was going downhill, turned out I needed a new furnace and none of the safety measures that are supposed to prevent co2 poisoning were doing their job.
posted by BoscosMom at 10:03 AM on April 8, 2023 [7 favorites]
posted by BoscosMom at 10:03 AM on April 8, 2023 [7 favorites]
Depression, nutritional deficiencies, side-effects from medications and emotional distress can all produce symptoms that can be mistaken as early signs of dementia, such as communication and memory difficulties and behavioural changes.
Dementia-like symptoms: What else could it be? - SCI
Just saying...
Iif nothing else this idea might make her more willing to be evaluated.
posted by BoscosMom at 10:16 AM on April 8, 2023 [6 favorites]
Dementia-like symptoms: What else could it be? - SCI
Just saying...
Iif nothing else this idea might make her more willing to be evaluated.
posted by BoscosMom at 10:16 AM on April 8, 2023 [6 favorites]
One avenue you might want to explore is a geriatrician (they're usually well versed in dementia patients) introduced as "how about we talk to this person about how you'll age and what to do to stay healthy as long as possible", plus meds interaction review if she's taking a lot - again, older people react paradoxically to many meds and combinations.
Anecdotally, I've seen much improvement in my family once blood pressure was sorted out and antidepressants introduced, in multiple cases. It turned out that previous high pressure was suppressed with so many drugs that they catapulted one particular person into 80/60 pressure episodes that had her terribly confused.
posted by I claim sanctuary at 12:55 PM on April 8, 2023 [2 favorites]
Anecdotally, I've seen much improvement in my family once blood pressure was sorted out and antidepressants introduced, in multiple cases. It turned out that previous high pressure was suppressed with so many drugs that they catapulted one particular person into 80/60 pressure episodes that had her terribly confused.
posted by I claim sanctuary at 12:55 PM on April 8, 2023 [2 favorites]
I'm sorry your family is going through this, and strongly second BoscosMom about a thorough medical work-up. If your mom's partner is also in their 70s, can they can raise the baseline-testing idea as something to do together?
greta simone, my mother's GP recommended a neurology consultation shortly before the 2020 shutdown. We fought about it, and in the end I had to just insist, schedule the appointment despite her anger, and make sure to be in town for it. (This consult was moved back several times anyway, for reasons beyond my control.) Late February, I brought Mom to the doctor's office and stayed with her during the exam. By then I'd been accompanying her to medical appointments with her approval (to take notes and fill in details) for over a year. After the labs came in, the neurologist referred her to hematology.
Mom's in the midst of more testing, but it's already clear that some of her issues -- which include the mood swings, forgetfulness, emotional outbursts, anxiety, and risky behaviors detailed in your question -- could have developed at a slower pace, or possibly been avoided altogether, with earlier diagnosis and treatment. The damage can't be undone. I so, so wish I'd been a metric fuckton pushier in 2019, when my own hyper-capable, 77-year-old mom was suddenly struggling with paperwork (and housework, and other sequential-planning tasks) and super-touchy about it.
posted by Iris Gambol at 2:15 PM on April 8, 2023 [2 favorites]
greta simone, my mother's GP recommended a neurology consultation shortly before the 2020 shutdown. We fought about it, and in the end I had to just insist, schedule the appointment despite her anger, and make sure to be in town for it. (This consult was moved back several times anyway, for reasons beyond my control.) Late February, I brought Mom to the doctor's office and stayed with her during the exam. By then I'd been accompanying her to medical appointments with her approval (to take notes and fill in details) for over a year. After the labs came in, the neurologist referred her to hematology.
Mom's in the midst of more testing, but it's already clear that some of her issues -- which include the mood swings, forgetfulness, emotional outbursts, anxiety, and risky behaviors detailed in your question -- could have developed at a slower pace, or possibly been avoided altogether, with earlier diagnosis and treatment. The damage can't be undone. I so, so wish I'd been a metric fuckton pushier in 2019, when my own hyper-capable, 77-year-old mom was suddenly struggling with paperwork (and housework, and other sequential-planning tasks) and super-touchy about it.
posted by Iris Gambol at 2:15 PM on April 8, 2023 [2 favorites]
I'm so sorry for this...my mom is in late-stage dementia now, and it was a long road.
My mom has a history of dementia in the women of her family, and so was well-prepared legally and financially, writing out a full financial and health care power of attorney that was triggered by a simple diagnosis from her doctor. If you can, please try to get a full power of attorney written while she still can sign it. Do either you, your siblings, or her partner have co-signer rights on her bank accounts? It has made caring for her much, much easier than all the rigamarole necessary to get rights to manage her finances after the fact.
You might also look into a senior adviser service, which we used to help find an excellent memory care facility for her. It's hard to think this might be needed down the road, but we had no idea such a service existed until we were in the panic stage of having to get my mom out of an independent living community into memory care.
posted by lhauser at 3:35 PM on April 8, 2023 [2 favorites]
My mom has a history of dementia in the women of her family, and so was well-prepared legally and financially, writing out a full financial and health care power of attorney that was triggered by a simple diagnosis from her doctor. If you can, please try to get a full power of attorney written while she still can sign it. Do either you, your siblings, or her partner have co-signer rights on her bank accounts? It has made caring for her much, much easier than all the rigamarole necessary to get rights to manage her finances after the fact.
You might also look into a senior adviser service, which we used to help find an excellent memory care facility for her. It's hard to think this might be needed down the road, but we had no idea such a service existed until we were in the panic stage of having to get my mom out of an independent living community into memory care.
posted by lhauser at 3:35 PM on April 8, 2023 [2 favorites]
One thing to consider is to frame the conversation as a hypothetical, "if you ever seem to show signs of dementia, how should we get you care? There are more and more medicines that might help someone with early dementia, if you show signs, how do we get your doctor involved as soon as possible to slow the disease? What are signs of early memory loss that we should all be aware of?
posted by papergirl at 3:54 PM on April 8, 2023 [1 favorite]
posted by papergirl at 3:54 PM on April 8, 2023 [1 favorite]
This is such difficult stuff. Part of her response to your trying to discuss it may be that she is aware of her own decline and it is terrifying for her - that's a pretty common response and makes it very hard to broach the topic.
If you have medical POA already, you can probably get her doctor to discuss her care with you once you give them the paperwork. I established online access for my three in-laws (for whom I am medical POA) and have had success with this, though it does take time.
If the changes are new to the doctor, they will probably want a brain MRI and other tests to rule out treatable causes. May be worth pursuing - insurance of course often requires these steps if you're going to get coverage for dementia care (though there's not a lot to be done apart from palliation of symptoms and living adjustments for her safety).
Definitely make a geriatrician appointment, which may also be a good way for the POA to immediately establish a relationship with the new doctor and be the primary point of contact.
posted by Pantengliopoli at 7:49 AM on April 9, 2023
If you have medical POA already, you can probably get her doctor to discuss her care with you once you give them the paperwork. I established online access for my three in-laws (for whom I am medical POA) and have had success with this, though it does take time.
If the changes are new to the doctor, they will probably want a brain MRI and other tests to rule out treatable causes. May be worth pursuing - insurance of course often requires these steps if you're going to get coverage for dementia care (though there's not a lot to be done apart from palliation of symptoms and living adjustments for her safety).
Definitely make a geriatrician appointment, which may also be a good way for the POA to immediately establish a relationship with the new doctor and be the primary point of contact.
posted by Pantengliopoli at 7:49 AM on April 9, 2023
I would recommend trying to schedule an appointment with a social worker and/or elder care lawyer to have a more full conversation about understanding your mother's wishes as she ages and exploring options. I think one of the reasons your mom is reacting so defensively is that this issue, which she must be aware of, is a sign of losing control and independence (very hard things).
Meeting with a social worker and elder care lawyer is a way of taking control and making choices while she can instead of having choices made for her later on when she will be unable or less able to be a part of those choices. Hearing a suggestion about getting a neurological work up from a third-party might be easier for your mother to actually hear and act on.
posted by brookeb at 11:11 AM on April 9, 2023 [2 favorites]
Meeting with a social worker and elder care lawyer is a way of taking control and making choices while she can instead of having choices made for her later on when she will be unable or less able to be a part of those choices. Hearing a suggestion about getting a neurological work up from a third-party might be easier for your mother to actually hear and act on.
posted by brookeb at 11:11 AM on April 9, 2023 [2 favorites]
Oof, this a hard one. From your descriptions, it certainly sounds like your mom is experiencing the early stages of dementia. Before you start to panic, you really need to get your mom to her doctor and have a relatively complete physical done. Some of those symptoms can also indicate a UTI at work, something older people become more and more susceptible to. There are also memory tests the doctor can give her.
But, if this is dementia starting, you need to do everything you can to get a whole lot of paperwork in order, to make the near future a lot less painful that it could be. You need to get her authorization to be able to speak with her doctors on her behalf. This is critical, as you eventually will need to be her legal advocate with her doctors. You may also, eventually, need to have her doctor determine her to no longer be competent (I had to have to do this with my own mom.)
You’re going to need a POA drawn-up, too. You need to get your name added to all of her bank accounts. You might do well to gather-up all her credit/debit cards, checks, etc. and keep them safely stashed.
I’m so sorry you might be going down this path. Your descriptions certainly remind me of when we really started noticing my mom’s decline. It was surprising (and scary) how quickly her decline was once it started.
I would also suggest you contact the Alzheimers Association in your area and see if they have any support groups you could join. When my mom started going downhill, my support group was invaluable. There were people in it who were much further along the path than we were, and they were so helpful in giving me tips, tricks, connections, etc.
posted by Thorzdad at 1:10 PM on April 9, 2023 [2 favorites]
But, if this is dementia starting, you need to do everything you can to get a whole lot of paperwork in order, to make the near future a lot less painful that it could be. You need to get her authorization to be able to speak with her doctors on her behalf. This is critical, as you eventually will need to be her legal advocate with her doctors. You may also, eventually, need to have her doctor determine her to no longer be competent (I had to have to do this with my own mom.)
You’re going to need a POA drawn-up, too. You need to get your name added to all of her bank accounts. You might do well to gather-up all her credit/debit cards, checks, etc. and keep them safely stashed.
I’m so sorry you might be going down this path. Your descriptions certainly remind me of when we really started noticing my mom’s decline. It was surprising (and scary) how quickly her decline was once it started.
I would also suggest you contact the Alzheimers Association in your area and see if they have any support groups you could join. When my mom started going downhill, my support group was invaluable. There were people in it who were much further along the path than we were, and they were so helpful in giving me tips, tricks, connections, etc.
posted by Thorzdad at 1:10 PM on April 9, 2023 [2 favorites]
Agree with the above posters about prioritizing legal paperwork at this stage. It will probably be easier to frame the conversation NOT around dementia, but just in terms of ageing overall. My parents and I went together to an estate planning/elder care attorney when they were about your mom's age. My dad was having early signs of dementia by that time, and fortunately my mom saw it as a good opportunity to pass the baton to us kids, update their wills, etc. Once my sister and I both had PoA and designation of health care surrogate (HIPAA release) we were able to start increasing our involvement in their healthcare and finances, so this is a critical first step.
You might find it helpful to suggest a visit to an attorney with your mom and sister. Treat it as taking care of "family" business, and if your mom needs convincing, explain how at her age (77), it's time to have a plan in place for the future; you don't want to wait for a medical emergency to occur before she gets her affairs in order. It's not about you taking over control, it's about ensuring that the future is as stress-free as possible for everyone. If she's willing to start keeping/sharing a log of her financial accounts and passwords, that's helpful too. When we met with the attorney, they had many recommendations for the above documents, and it was easier for my dad to hear from a professional that these things were needed than to take our word for it.
As for "getting care" for dementia, I assume you know that there isn't a lot that can be done to mitigate the advance of the disease, apart from having her doctor note the changes, request cognitive tests, and be in a position to revoke driving privileges depending on the result. In my dad's case, my mom did eventually force him to get tested by a dementia specialist, and they immediately revoked my dad's license (my mom already did all the driving, in any case). They prescribed Donepezil, which is said to slow the progression of the disease, but I have no idea if it was effective. His dementia gradually and steadily increased, but maybe it was slower than it would have been. His GP was good about talking to him about memory loss as a "normal" thing as we age, and not something to be ashamed of. I will say that once his confusion got to a certain point, he stopped denying that it was happening, and he started to be able to talk about how scary and frustrating it was for him. All the same, he would have never voluntarily surrendered his driver's license.
posted by amusebuche at 12:19 AM on April 10, 2023
You might find it helpful to suggest a visit to an attorney with your mom and sister. Treat it as taking care of "family" business, and if your mom needs convincing, explain how at her age (77), it's time to have a plan in place for the future; you don't want to wait for a medical emergency to occur before she gets her affairs in order. It's not about you taking over control, it's about ensuring that the future is as stress-free as possible for everyone. If she's willing to start keeping/sharing a log of her financial accounts and passwords, that's helpful too. When we met with the attorney, they had many recommendations for the above documents, and it was easier for my dad to hear from a professional that these things were needed than to take our word for it.
As for "getting care" for dementia, I assume you know that there isn't a lot that can be done to mitigate the advance of the disease, apart from having her doctor note the changes, request cognitive tests, and be in a position to revoke driving privileges depending on the result. In my dad's case, my mom did eventually force him to get tested by a dementia specialist, and they immediately revoked my dad's license (my mom already did all the driving, in any case). They prescribed Donepezil, which is said to slow the progression of the disease, but I have no idea if it was effective. His dementia gradually and steadily increased, but maybe it was slower than it would have been. His GP was good about talking to him about memory loss as a "normal" thing as we age, and not something to be ashamed of. I will say that once his confusion got to a certain point, he stopped denying that it was happening, and he started to be able to talk about how scary and frustrating it was for him. All the same, he would have never voluntarily surrendered his driver's license.
posted by amusebuche at 12:19 AM on April 10, 2023
Just to add, another piece of this is figuring out what happens once your mom loses her license. People are always so quick to insist that older people surrender their driving privileges, but then what? How do they get to appointments and do their shopping and go to church and see friends? How is her daily routine going to have to change? It is a major thing to expect people to suddenly stop living their life as they know it. It might be necessary thing, but for the person, it does not feel in any way reasonable. It's a shocking loss of freedom, both symbolically and literally.
With my dad, he went from having my mom to drive him around, to his daughters, until we moved him to an independent living community where they had shuttle bus transport to shopping, doctors, and church, but that never really worked as promised. The shuttle to doctors or church left him waiting (and confused) for an hour or more after appointments/church; the shopping bus didn't go to the stores he liked or was familiar with. Eventually we hired some elder care support to take him around, but they often sent different people, sometimes even different people for drop off and pick up, and so for him he never felt like he was in control and it amplified his grief over losing his driving privileges. It meant that he had to stop going out, and my sister and I had to schedule frequent visits to ensure he got to all of his medical appointments.
When your mom stops driving (and it does sound like when, not if), you are going to need a good support network and possibly a range of services that she is not currently connected with.
posted by amusebuche at 12:48 AM on April 10, 2023 [1 favorite]
With my dad, he went from having my mom to drive him around, to his daughters, until we moved him to an independent living community where they had shuttle bus transport to shopping, doctors, and church, but that never really worked as promised. The shuttle to doctors or church left him waiting (and confused) for an hour or more after appointments/church; the shopping bus didn't go to the stores he liked or was familiar with. Eventually we hired some elder care support to take him around, but they often sent different people, sometimes even different people for drop off and pick up, and so for him he never felt like he was in control and it amplified his grief over losing his driving privileges. It meant that he had to stop going out, and my sister and I had to schedule frequent visits to ensure he got to all of his medical appointments.
When your mom stops driving (and it does sound like when, not if), you are going to need a good support network and possibly a range of services that she is not currently connected with.
posted by amusebuche at 12:48 AM on April 10, 2023 [1 favorite]
OK so you are very lucky in that Asheville has a world class memory care facility. It's really great; it was one of the first established and the people there are extremely knowledgeable and very helpful. Ask your mom's doctor for a referral and then get her in there for an assessment. Here is the deal with that: your mother's doctor cannot give you any information but you can give them information. So you call and say, ok, this is my parent, we are concerned, we'd like the doctor to see her about memory care issues and/or we'd like a referral to Memory Care. Ask when her next general appointment is and then you make sure that you or your sister go with her. I got my parent & aunt to agree to take someone else to every doctor's appointment by just talking about it in glowing terms, like, it's so helpful! You need two people to ask questions and remember everything they say! and so on. Then I went to every single doctor's appointment and when you are 77, there are a lot of them. It actually is super helpful to have someone else there no matter how old you are, so just frame it like that. Then when you are there and they bring up Memory Care, you can be all, oh that place is amazing!
A lot of caregiving for older people, with or without dementia, is redirection. Nobody wants to admit weakness, nobody wants to think they may need help doing things that used to be simple, nobody wants to give up being an adult. So the best way to make that happen is often kind of quietly, gently, sneaky. Going in blunt with Mom! Your memory sucks! is never going to work. Going in saying, "I just read this article online about how helpful it is to have someone accompany you to doctor's visits. Appointments cost so much! You're wasting money if you don't have someone else there to write everything down. I'm going to do that from now on, what do you think? I could start coming with you if you come with me," gives you a much better chance of getting them to actually agree.
posted by mygothlaundry at 1:43 PM on April 10, 2023 [2 favorites]
A lot of caregiving for older people, with or without dementia, is redirection. Nobody wants to admit weakness, nobody wants to think they may need help doing things that used to be simple, nobody wants to give up being an adult. So the best way to make that happen is often kind of quietly, gently, sneaky. Going in blunt with Mom! Your memory sucks! is never going to work. Going in saying, "I just read this article online about how helpful it is to have someone accompany you to doctor's visits. Appointments cost so much! You're wasting money if you don't have someone else there to write everything down. I'm going to do that from now on, what do you think? I could start coming with you if you come with me," gives you a much better chance of getting them to actually agree.
posted by mygothlaundry at 1:43 PM on April 10, 2023 [2 favorites]
Oh and you may need her regular doctor's referral not just for insurance or whatever but also to make her want to go. My relatives wouldn't want to just do something I recommended but let the doctor say they needed to go to this specialist and they were all about it.
posted by mygothlaundry at 1:46 PM on April 10, 2023
posted by mygothlaundry at 1:46 PM on April 10, 2023
I want to warn you up front that this is a very tough part of dementia. It's all tough, a lot of feeling helpless, but the early to middle part is where something could be done but the person with dementia will prevent it from happening. The system in the U.S., in general, makes it extremely difficult to force someone to accept help. The strong presumption is that as long as the person can understand their situation and make a choice, that choice must be followed. Even if there is medical or financial power of attorney, you can't go against the person's wishes in the few cases I have personally seen. And of course, you're not going to get a diagnosis of incapacity without involving the medical community, which the person with dementia can refuse.
So it's all too possible that your mom will refuse and refuse to get any help until she becomes unsafe to live on her own, and there won't be anything you can do. Then the tipping point will come after a 911 call and you'll have a few weeks to set up a whole new life for her. I'm really sorry. My own father was living in a hording situation, with uncontrolled diabetes, asking the neighbors for help showering, and there was nothing I could do. Even after multiple 911 calls, bouncing around in rehabs, I finally had to fly out in order to convince him to move into a nursing home. He never, not once, agreed that he needed to go. Even though the rehab was not going to release him, even though his kids were all worried about him, even though he had the money to go to a beautiful private place. And then we basically did the whole thing over again six months later to empty his apartment. A couple years ago he had a 1,000 day streak on Duolingo and now he can't remember the names of his grandkids, it happened that quickly. Calling the Alzheimer's Association was very helpful, an elder care manager if you can afford it, but there are real limits to what you can do. The anxiety of having dementia is overwhelming even to the mentally healthy. Again, I'm sorry.
posted by wnissen at 5:07 PM on April 11, 2023
So it's all too possible that your mom will refuse and refuse to get any help until she becomes unsafe to live on her own, and there won't be anything you can do. Then the tipping point will come after a 911 call and you'll have a few weeks to set up a whole new life for her. I'm really sorry. My own father was living in a hording situation, with uncontrolled diabetes, asking the neighbors for help showering, and there was nothing I could do. Even after multiple 911 calls, bouncing around in rehabs, I finally had to fly out in order to convince him to move into a nursing home. He never, not once, agreed that he needed to go. Even though the rehab was not going to release him, even though his kids were all worried about him, even though he had the money to go to a beautiful private place. And then we basically did the whole thing over again six months later to empty his apartment. A couple years ago he had a 1,000 day streak on Duolingo and now he can't remember the names of his grandkids, it happened that quickly. Calling the Alzheimer's Association was very helpful, an elder care manager if you can afford it, but there are real limits to what you can do. The anxiety of having dementia is overwhelming even to the mentally healthy. Again, I'm sorry.
posted by wnissen at 5:07 PM on April 11, 2023
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With my father it took a precipitating medical event to get him to let me take over bill paying and oversee his care. Dementia is often a stair-step descent where things abruptly get a lot worse. It sounds as if you're very close to needing to do hard things like take car away and take over her financials. Good luck - this stuff is so so hard.
posted by leslies at 7:40 AM on April 8, 2023 [4 favorites]