Respect my sister's wishes, or pursue options?
April 16, 2024 1:24 PM Subscribe
My sister wants my mom to come live with her due to her Alzheimer's; I am asking for a little time to find out what our options are re: assisted living. Is that a big ask?
My mom has Alzheimer's; it is progressing rapidly and I can see the writing on the wall. She will not be able to live independently in the near future. I want to do some research about our options in South Carolina. I live in Canada; my younger sister lives a few minutes away from her.
Here are the complications:
*Younger sis thinks Mom should live with her, her husband, and two kids. She is already caregiving, but is also trying to tackle sobriety and raising two teenagers, one of whom has been acting out big time for a while now. My concern is that with sis's PTSD (untreated), this could be a bad bad thing for her stress levels. Like, she has a sharp tongue and temper and it feels like a lot to have her also be 24/7 with my mom in her house.
* Finance. Mom is on Medicare and Sis is convinced we can afford nothing. I feel otherwise; I feel we have help available to us, but my sister and her husband are of the opinion that that's for "other" people, not us.
*The cat. My mom has a companion cat that she dotes on and loves, and if she moves with my allergic sister, she will have to give up the beloved cat. (I have offered to look for rehoming options because my sis is no fan of cats.)
I'll be honest with you all: for years my sister and I had a very rocky relationship. That has changed since I got sober five years ago. It's been nearly a year of actually talking to each other, listening to each other, and being there for each other when so much of our lives weren't that way. She's the only sibling I have. I don't want to lose this relationship again.
Basically: I just want to do some research on options for our mother that don't have her living with sis, but sis is insistent mom will have to live with them. Do I let this go and let her take the lead? She's already POA and I am never going to contest any of that. I just worry about her mental health. There's a lot of trauma she never dealt with and I worry that this might the straw that breaks the camel's back. Thanks for reading.
My mom has Alzheimer's; it is progressing rapidly and I can see the writing on the wall. She will not be able to live independently in the near future. I want to do some research about our options in South Carolina. I live in Canada; my younger sister lives a few minutes away from her.
Here are the complications:
*Younger sis thinks Mom should live with her, her husband, and two kids. She is already caregiving, but is also trying to tackle sobriety and raising two teenagers, one of whom has been acting out big time for a while now. My concern is that with sis's PTSD (untreated), this could be a bad bad thing for her stress levels. Like, she has a sharp tongue and temper and it feels like a lot to have her also be 24/7 with my mom in her house.
* Finance. Mom is on Medicare and Sis is convinced we can afford nothing. I feel otherwise; I feel we have help available to us, but my sister and her husband are of the opinion that that's for "other" people, not us.
*The cat. My mom has a companion cat that she dotes on and loves, and if she moves with my allergic sister, she will have to give up the beloved cat. (I have offered to look for rehoming options because my sis is no fan of cats.)
I'll be honest with you all: for years my sister and I had a very rocky relationship. That has changed since I got sober five years ago. It's been nearly a year of actually talking to each other, listening to each other, and being there for each other when so much of our lives weren't that way. She's the only sibling I have. I don't want to lose this relationship again.
Basically: I just want to do some research on options for our mother that don't have her living with sis, but sis is insistent mom will have to live with them. Do I let this go and let her take the lead? She's already POA and I am never going to contest any of that. I just worry about her mental health. There's a lot of trauma she never dealt with and I worry that this might the straw that breaks the camel's back. Thanks for reading.
A lot of the processes for moving your mother into assisted living, etc., will be the same as for moving her into your sister's home. I'm not sure there's much harm in getting started on moving her out of her current home, for instance.
Does your mother have assets? Does she own her home and is it paid off? Is it possible your sister is worried about preserving those assets, which can be clawed back if/when you mother ends up in a nursing home on Medicaid? I don't have a good sense of how deeply you or your sister have looked into the various options - from your question it seems equally possible that you don't understand the situation OR that your sister is dismissing options without really considering them.
posted by mskyle at 2:21 PM on April 16 [5 favorites]
Does your mother have assets? Does she own her home and is it paid off? Is it possible your sister is worried about preserving those assets, which can be clawed back if/when you mother ends up in a nursing home on Medicaid? I don't have a good sense of how deeply you or your sister have looked into the various options - from your question it seems equally possible that you don't understand the situation OR that your sister is dismissing options without really considering them.
posted by mskyle at 2:21 PM on April 16 [5 favorites]
Best answer: It’s not an either/or proposition. There are many steps between living with her daughter as full time caretaker and living separately in a care home. There are nurses and other caretakers who can come part time to help with your mom’s specific needs to your sister’s home. There are also different skilled workers who could come to help with your sister’s other obligations to free her up to help your mom more consistently. There are programs to help her teens gain confidence and independence like work studies and mentor systems and community organizations so they can ride out these transitional years more smoothly. Depending on their exact location there might be local senior centers where your mom could spend chunks of time, and animal rescue groups who could try to find a home for the cat where your mom could make visits, or even just places with other cats she could visit to spend time with animals in a calm space.
I think you are right that there are resources available. But I also know that accessing these resources is a huge undue burden for a lot of people. It is absolutely reasonable for your sister and her husband to see these resources as inaccessible to them, because in the US there are so many hoops to jump through and boxes to squeeze into to access them that it can become a full time job just to learn what they are and who is eligible for them. It is likely that your sister sees the situation as very urgent and does not have the time, preexisting knowledge, or energy to look into things like you want to.
Would it be possible for you to come visit her for a good chunk of time while they move your mom in? Don’t stay with them, that would probably be too much unless their house is huge, but do a long term stay nearby, like maybe a month. Be there to help move things physically and also do a ton of phone calls, research, and other kinds of getting in touch with people and groups who can help out in the community. Things your sister won’t have the time or willingness to struggle through. Being there in person will help a lot because you will be able to visit places and meet people face to face, as well as physically help your family with all the moving and cleaning and organizing needed.
It is quite likely that your sister has some resentment about you, since you are so far away and she has taken responsibility for your mom with power of attorney and everything. You coming to visit and help as much as you can might be perceived as sticking your nose in where it doesn’t belong. So I think if you can have a couple of conversations with her that show her you are absolutely okay with her calling the shots and making final choices she might be more open to you doing some of this research and helping out in whatever ways you can. It might also not work out like that at all - every family is different. But if you have come off as bossy or stubborn with her in the past she may be projecting that attitude onto you now. It can be really hard to dig past years of messy sibling relationships and get to a place of mutual compassion and assistance. Don’t give up trying, but also give her space.
As for the cat, there has recently been some progress in the realm of cat allergies. There is a cat food that can reduce the cat’s production of allergens over time. Of course it isn’t guaranteed and doesn’t work 100%, but it might be worth a try, especially if it’s something you could bankroll from afar. But otherwise, finding a no-kill shelter or cat rescue group is the ethical thing to do. There are lots of reasons cats get surrendered by their owners and what you describe is a totally normal and common one. There might also be something akin to Home to Home nearby, which might facilitate a rehoming process.
posted by Mizu at 2:22 PM on April 16 [6 favorites]
I think you are right that there are resources available. But I also know that accessing these resources is a huge undue burden for a lot of people. It is absolutely reasonable for your sister and her husband to see these resources as inaccessible to them, because in the US there are so many hoops to jump through and boxes to squeeze into to access them that it can become a full time job just to learn what they are and who is eligible for them. It is likely that your sister sees the situation as very urgent and does not have the time, preexisting knowledge, or energy to look into things like you want to.
Would it be possible for you to come visit her for a good chunk of time while they move your mom in? Don’t stay with them, that would probably be too much unless their house is huge, but do a long term stay nearby, like maybe a month. Be there to help move things physically and also do a ton of phone calls, research, and other kinds of getting in touch with people and groups who can help out in the community. Things your sister won’t have the time or willingness to struggle through. Being there in person will help a lot because you will be able to visit places and meet people face to face, as well as physically help your family with all the moving and cleaning and organizing needed.
It is quite likely that your sister has some resentment about you, since you are so far away and she has taken responsibility for your mom with power of attorney and everything. You coming to visit and help as much as you can might be perceived as sticking your nose in where it doesn’t belong. So I think if you can have a couple of conversations with her that show her you are absolutely okay with her calling the shots and making final choices she might be more open to you doing some of this research and helping out in whatever ways you can. It might also not work out like that at all - every family is different. But if you have come off as bossy or stubborn with her in the past she may be projecting that attitude onto you now. It can be really hard to dig past years of messy sibling relationships and get to a place of mutual compassion and assistance. Don’t give up trying, but also give her space.
As for the cat, there has recently been some progress in the realm of cat allergies. There is a cat food that can reduce the cat’s production of allergens over time. Of course it isn’t guaranteed and doesn’t work 100%, but it might be worth a try, especially if it’s something you could bankroll from afar. But otherwise, finding a no-kill shelter or cat rescue group is the ethical thing to do. There are lots of reasons cats get surrendered by their owners and what you describe is a totally normal and common one. There might also be something akin to Home to Home nearby, which might facilitate a rehoming process.
posted by Mizu at 2:22 PM on April 16 [6 favorites]
Best answer: Medicare doesn't pay for much except hospital/doctor/medication depending on what "plan" one is under. Medicaid is for those folks with zero assets and there is a process for qualifying. It's a LOT of paperwork. Perhaps you can look into handling that from Canada so everyone is clear about the rules specific to South Carolina. Medicaid will only pay for a skilled nursing facility which means shared room and very little belongings (the cat is not an option there.)
Yes. Looking after an Alzheimers patient full time without help is not sustainable for one person. So you are right to be concerned. Unfortunately many patients cannot be safely left alone. From a distance there's no way for you to assess your mom.
If you can plan a trip to SC soon, that's a good way for the family to come to a better understanding.
posted by mightshould at 2:31 PM on April 16 [8 favorites]
Yes. Looking after an Alzheimers patient full time without help is not sustainable for one person. So you are right to be concerned. Unfortunately many patients cannot be safely left alone. From a distance there's no way for you to assess your mom.
If you can plan a trip to SC soon, that's a good way for the family to come to a better understanding.
posted by mightshould at 2:31 PM on April 16 [8 favorites]
Best answer: Sorry I was on the train and got confused, I thought your sister lived in another state so I'm going to try again
In general medicaid eligibility ( the thing that pays for facility care) is complicated. It is possible your mom falls into the self pay for nursing care category right now. Lots of people do. The asset limits were set decades ago and are very very very low. In general it is possible for people to spend down their assets to qualify for medicaid but that can be incredibly complicated. Consulting an eldercare navigator/advisor and or a lawyer to look at all this stuff and help you figure it out is important. The insurance aid is complicated and the ramifications can be very real.
Staying with your sister doesn't mean she has to stay out of a facility forever. Many times caregivers bring patients to emergency rooms essentially for placement bc caregiveing demands get to much. It happens, people will get placed, even if providers give some push back about it. At the end of the day if they aren't safe to discharge the patient is not safe to discharge. You can also get placement from outpatient directly to facilities. They key thing is to emphasize in that situation is the things that are make it unsafe like my parent wonders and gets lost, she's a fall risk etc .
Honestly in my opinion at home care is in general usually better unless there is a clear safety issue. People have more meaningful social interaction, they have more incentive to move around, have more control over their diet and in general your sister will have a better idea of your mother's health and changes way better than a parade of medical professionals working at a facility.
.
posted by AlexiaSky at 2:35 PM on April 16 [3 favorites]
In general medicaid eligibility ( the thing that pays for facility care) is complicated. It is possible your mom falls into the self pay for nursing care category right now. Lots of people do. The asset limits were set decades ago and are very very very low. In general it is possible for people to spend down their assets to qualify for medicaid but that can be incredibly complicated. Consulting an eldercare navigator/advisor and or a lawyer to look at all this stuff and help you figure it out is important. The insurance aid is complicated and the ramifications can be very real.
Staying with your sister doesn't mean she has to stay out of a facility forever. Many times caregivers bring patients to emergency rooms essentially for placement bc caregiveing demands get to much. It happens, people will get placed, even if providers give some push back about it. At the end of the day if they aren't safe to discharge the patient is not safe to discharge. You can also get placement from outpatient directly to facilities. They key thing is to emphasize in that situation is the things that are make it unsafe like my parent wonders and gets lost, she's a fall risk etc .
Honestly in my opinion at home care is in general usually better unless there is a clear safety issue. People have more meaningful social interaction, they have more incentive to move around, have more control over their diet and in general your sister will have a better idea of your mother's health and changes way better than a parade of medical professionals working at a facility.
.
posted by AlexiaSky at 2:35 PM on April 16 [3 favorites]
Best answer: “I’m worried it will be a lot for you. Do you mind if I do some research into alternatives before we make a final decision?”
Have you said this already? If not, of course you can say it. Once. But if you’ve said it once, and she said no, cede gracefully. I am going through something similar now with my siblings and my rule of thumb (from al-anon, actually!) is to say my opinion once and then let it go. This will be a long process; the most likely outcome is that your mom lives with your sister for a while and then goes somewhere else. Since your sister is taking the brunt of the work, ask her how you can help and then do that. If you push it too hard now, and it turns into a fight, then she might be more reluctant to come to you later if admitting she is overwhelmed also means admitting she was wrong.
posted by Merricat Blackwood at 2:38 PM on April 16 [8 favorites]
Have you said this already? If not, of course you can say it. Once. But if you’ve said it once, and she said no, cede gracefully. I am going through something similar now with my siblings and my rule of thumb (from al-anon, actually!) is to say my opinion once and then let it go. This will be a long process; the most likely outcome is that your mom lives with your sister for a while and then goes somewhere else. Since your sister is taking the brunt of the work, ask her how you can help and then do that. If you push it too hard now, and it turns into a fight, then she might be more reluctant to come to you later if admitting she is overwhelmed also means admitting she was wrong.
posted by Merricat Blackwood at 2:38 PM on April 16 [8 favorites]
Best answer: I second the suggestion to let your sister move your mom in for now - to satisfy her sense of urgency, and because what you describe isn't dangerous or harmful to your mom. (Yes, the cat, but if you ask your mom if she'd rather have her cat and be cared for by strangers or lose her cat and be cared for by her daughter, I'm pretty sure she would pick her daughter.)
You can do your research and check in with her in a couple of months to show her what you found. But let her be the judge of whether or not she is overwhelmed. Consider your role to be the person she can trust enough to admit it if she is overwhelmed. Make it so she feels safe to tell you "you were right all along, and I was wrong, I can't handle this." ---> If she is to trust you this much, you can't be telling her now that "No its going to be too much for you, no this is a bad idea because of your PTSD" etc.
You know your sister and you know more than any of us do what her relationship to caregiving is, how her relationship with your mother is, etc. It's clear from your post that you feel protective towards both your sister and your mother: you don't want your sister to become overwhelmed, you don't want your mother to have to deal with possible conflict or chaos in this most vulnerable time of her life. Your opposition to your sister becoming the caregiver is not only understandable, it may also be "correct".
But I'd encourage you to consider the positives. A daughter as caregiver (even one who comes with possible conflict and chaos) is likely going to be much preferable to your mother compared to even the best professional caregivers. To have a caregiver to whom one feels strongly connected and attached is a gift, and it is much more so to an Alzheimer's patient. What does your mother say about your sister's plan? She should have a say, even if she's only 60% "there".
posted by MiraK at 2:46 PM on April 16 [6 favorites]
You can do your research and check in with her in a couple of months to show her what you found. But let her be the judge of whether or not she is overwhelmed. Consider your role to be the person she can trust enough to admit it if she is overwhelmed. Make it so she feels safe to tell you "you were right all along, and I was wrong, I can't handle this." ---> If she is to trust you this much, you can't be telling her now that "No its going to be too much for you, no this is a bad idea because of your PTSD" etc.
You know your sister and you know more than any of us do what her relationship to caregiving is, how her relationship with your mother is, etc. It's clear from your post that you feel protective towards both your sister and your mother: you don't want your sister to become overwhelmed, you don't want your mother to have to deal with possible conflict or chaos in this most vulnerable time of her life. Your opposition to your sister becoming the caregiver is not only understandable, it may also be "correct".
But I'd encourage you to consider the positives. A daughter as caregiver (even one who comes with possible conflict and chaos) is likely going to be much preferable to your mother compared to even the best professional caregivers. To have a caregiver to whom one feels strongly connected and attached is a gift, and it is much more so to an Alzheimer's patient. What does your mother say about your sister's plan? She should have a say, even if she's only 60% "there".
posted by MiraK at 2:46 PM on April 16 [6 favorites]
If your mom is still able to weigh in here, I’d try hard to have conversations with her while you still can about what her wishes are. But since you don’t mention that I will assume it’s not an option at this point.
So: yes, I think a discussion with an elder care navigator about options would be a good idea. But I don’t see any reason not to support your sister in moving your mom in with her in the meanwhile, if that’s what she’s asking for. I think you have to respect your sister’s right to decide for herself what she is willing to take on and what the effects on her mental health might be. You can certainly make sure to frame it as a trial run and leave your sister the explicit out of letting you know at any point if it’s not working out, and reiterating that you will absolutely be up for taking the lead on exploring other options if that happens.
posted by Stacey at 2:59 PM on April 16 [2 favorites]
So: yes, I think a discussion with an elder care navigator about options would be a good idea. But I don’t see any reason not to support your sister in moving your mom in with her in the meanwhile, if that’s what she’s asking for. I think you have to respect your sister’s right to decide for herself what she is willing to take on and what the effects on her mental health might be. You can certainly make sure to frame it as a trial run and leave your sister the explicit out of letting you know at any point if it’s not working out, and reiterating that you will absolutely be up for taking the lead on exploring other options if that happens.
posted by Stacey at 2:59 PM on April 16 [2 favorites]
Best answer: I know there are a ton of complexities and challenges and limitations to consider in this but I just want to drop a comment that I think your mom getting to have access to her companion cat is valuable. Your mom is going to go through a transition that will probably be very frightening and destabilizing for her and having a familiar companion animal that she loves could go a long way towards helping her stay comfortable during a housing situation change. If your sister is an absolute no-go on the cat, maybe there is a way for you or someone you know to foster the cat (ideally) temporarily while longer term possibly-cat-friendly plans are made?
posted by crime online at 3:02 PM on April 16 [5 favorites]
posted by crime online at 3:02 PM on April 16 [5 favorites]
Best answer: It's one thing for your mother to live with her sister and family in the earlier stages of Alzheimer's. It's another thing entirely as the disease progresses and I doubt your sister has a realistic view of what's involved. There's no way one person can be an effective caregiver of someone with advanced Alzheimer's, at least not without pretty much completely walking away from her role as a mother to two children.
Moving in with your sister is probably a reasonable option in the short term and perhaps better for both your mother and your sister. But there needs to be a realistic approach taken with the fact that your mother will deteriorate quickly at the core and an understanding that this is in no way a viable longer-term solution. Having her live with your sister while you collectively investigate a more permanent solution is likely to be a good compromise, allowing your sister to have her way (which seems important to her) and keeping your mother with family close for as long as possible. Alzheimer's will progress to a point where your mother both needs professional care to live with some level of dignity and loses enough sense of reality that she won't be adversely affected by no longer living with family.
The longer your mother can stay with family and 'at home', the happier she will be, so plan for that but don't get caught out having to make hasty decisions when that environment is no longer safe for her. Plan ahead.
It's incredibly hard for both you and your sister to watch your mother deteriorate before your eyes and it's also unbelievably hard for your mother to go through that loss of self. Be kind to yourselves and each other.
Realistically, I don't see any way for your mother to have her cat with her long-term.
posted by dg at 3:19 PM on April 16 [12 favorites]
Moving in with your sister is probably a reasonable option in the short term and perhaps better for both your mother and your sister. But there needs to be a realistic approach taken with the fact that your mother will deteriorate quickly at the core and an understanding that this is in no way a viable longer-term solution. Having her live with your sister while you collectively investigate a more permanent solution is likely to be a good compromise, allowing your sister to have her way (which seems important to her) and keeping your mother with family close for as long as possible. Alzheimer's will progress to a point where your mother both needs professional care to live with some level of dignity and loses enough sense of reality that she won't be adversely affected by no longer living with family.
The longer your mother can stay with family and 'at home', the happier she will be, so plan for that but don't get caught out having to make hasty decisions when that environment is no longer safe for her. Plan ahead.
It's incredibly hard for both you and your sister to watch your mother deteriorate before your eyes and it's also unbelievably hard for your mother to go through that loss of self. Be kind to yourselves and each other.
Realistically, I don't see any way for your mother to have her cat with her long-term.
posted by dg at 3:19 PM on April 16 [12 favorites]
Best answer: The person with the most skin in the game calls the shots.
Been there, done this for both parents.
It's hard to step up for the person you love, but it is even harder if someone is backseat driving from a distance. If your sister is the person who sees the whole process every day, then give her grace to make the best decisions.
Trust me, it gets harder in different ways from here. At least it sounds like she is past negotiating with God about how this can't be happening. Good for her.
Unless you have solid evidence of neglect/abuse, then family caregivers are the way to go until you hit the slippery slope of skilled medical needs that cannot be met in the home.
Tell your family that you love them and are there for them.
Ask what do they need from you.
Be their wingman.
And yes, they need to get an elder care advisor on board now for medical, financial, spiritual and mental health care. This is an "all hands on deck" approach, for the son-in-law and grandchildren as well as the mother and both daughters. I haven't checked your primary family stats, but your household needs support, too.
But it will be a work in progress. It will evolve. Mistakes will be made.
Step back, take a breath, try something else.
This is hard.
.
.
.
And the instinct to swoop in and fix things is hard to fight. And you are the big sister.
But your mom needs one person to filter the garbage from the things that really make a difference for her.
There will be experts and they may have conflicting and confusing professional goals for your mother as her health issues progress.
And everybody has an opinion.
One person needs to take charge.
Stress relief --
If your sister can keep a folder or computer file of what has already been done, what is going on now, and what to expect, that would be great.
It is incredibly easy to misunderstand what the doctor says, whether the insurance has been filed correctly, when to contact outpatient services, etc. If it's in writing, everyone is up to date.
But that may be too stressful. It feels so permanent to relive some of those words on paper or file.
If she's up to it, have a backup plan to give your sister some relief, even if it's a few hours to herself. She may fight this.
No one is keeping score.
This is a team effort.
There are a few ways to get "caring for an ailing parent" wrong, but there are enough people involved to take up the slack.
And let your sister know that along with helping mom, you need to take care of her, too. You can't be a doctor, but you can be a sister. That's your best job, and you have her back, one hundred percent.
Be good to yourself. Psychic hugs.
posted by TrishaU at 3:28 PM on April 16 [6 favorites]
Been there, done this for both parents.
It's hard to step up for the person you love, but it is even harder if someone is backseat driving from a distance. If your sister is the person who sees the whole process every day, then give her grace to make the best decisions.
Trust me, it gets harder in different ways from here. At least it sounds like she is past negotiating with God about how this can't be happening. Good for her.
Unless you have solid evidence of neglect/abuse, then family caregivers are the way to go until you hit the slippery slope of skilled medical needs that cannot be met in the home.
Tell your family that you love them and are there for them.
Ask what do they need from you.
Be their wingman.
And yes, they need to get an elder care advisor on board now for medical, financial, spiritual and mental health care. This is an "all hands on deck" approach, for the son-in-law and grandchildren as well as the mother and both daughters. I haven't checked your primary family stats, but your household needs support, too.
But it will be a work in progress. It will evolve. Mistakes will be made.
Step back, take a breath, try something else.
This is hard.
.
.
.
And the instinct to swoop in and fix things is hard to fight. And you are the big sister.
But your mom needs one person to filter the garbage from the things that really make a difference for her.
There will be experts and they may have conflicting and confusing professional goals for your mother as her health issues progress.
And everybody has an opinion.
One person needs to take charge.
Stress relief --
If your sister can keep a folder or computer file of what has already been done, what is going on now, and what to expect, that would be great.
It is incredibly easy to misunderstand what the doctor says, whether the insurance has been filed correctly, when to contact outpatient services, etc. If it's in writing, everyone is up to date.
But that may be too stressful. It feels so permanent to relive some of those words on paper or file.
If she's up to it, have a backup plan to give your sister some relief, even if it's a few hours to herself. She may fight this.
No one is keeping score.
This is a team effort.
There are a few ways to get "caring for an ailing parent" wrong, but there are enough people involved to take up the slack.
And let your sister know that along with helping mom, you need to take care of her, too. You can't be a doctor, but you can be a sister. That's your best job, and you have her back, one hundred percent.
Be good to yourself. Psychic hugs.
posted by TrishaU at 3:28 PM on April 16 [6 favorites]
Seconding a lot of what dg says, other than that sometimes the course is actually very very slow. The drugs they have now principally work by making it slower. You need to have back pocket plans for what happens if your sister is still in the throes of this in several years.
posted by eirias at 3:30 PM on April 16 [3 favorites]
posted by eirias at 3:30 PM on April 16 [3 favorites]
It's one thing for your mother to live with her sister and family in the earlier stages of Alzheimer's. It's another thing entirely as the disease progresses and I doubt your sister has a realistic view of what's involved.
Yes, with my grandma who had Alzheimer's there was a relatively short period between being in assisted living and needing to be in a nursing home with full-time care. Of course, it's a disease with a wide variety of symptoms and severity for different people, but I'd start planning for range of potential futures.
posted by coffeecat at 3:30 PM on April 16 [1 favorite]
Yes, with my grandma who had Alzheimer's there was a relatively short period between being in assisted living and needing to be in a nursing home with full-time care. Of course, it's a disease with a wide variety of symptoms and severity for different people, but I'd start planning for range of potential futures.
posted by coffeecat at 3:30 PM on April 16 [1 favorite]
As an addendum to my previous comment, Table 2 in this paper has some survival statistics for dementia patients broken down by different characteristics at diagnosis. Survival time tool to guide care planning in people with dementia
posted by eirias at 3:43 PM on April 16 [2 favorites]
posted by eirias at 3:43 PM on April 16 [2 favorites]
Best answer: The details in your question reminded of your previous Ask about your mom's situation, in which she had Medicare and Medicaid coverage. Do you know if it's solely Medicare now? (I swear I am not nitpicking, Kitteh, $$ for assisted living depends on her current status.)
posted by Iris Gambol at 3:43 PM on April 16 [2 favorites]
posted by Iris Gambol at 3:43 PM on April 16 [2 favorites]
There are lots of good comments here, and you can also find resources with the Alzheimer's Project or your local version of Elder Care Resources; I don't need to rehash all of that.
I do want to point out that Alzheimer's patients can go on an emotional roller coaster, and if your mom gets argumentative and your sister has a "quick temper" things can get bad. My wife and her mother had some problems but Mom went through the argumentative stage quickly and it got way better. Her aunt, who we also were caregivers for, was an entirely different story; she was argumentative for just about the entire duration of her Alzeheimer's.
posted by TimHare at 4:09 PM on April 16 [1 favorite]
I do want to point out that Alzheimer's patients can go on an emotional roller coaster, and if your mom gets argumentative and your sister has a "quick temper" things can get bad. My wife and her mother had some problems but Mom went through the argumentative stage quickly and it got way better. Her aunt, who we also were caregivers for, was an entirely different story; she was argumentative for just about the entire duration of her Alzeheimer's.
posted by TimHare at 4:09 PM on April 16 [1 favorite]
I don't understand why you would have to avoid looking at these options if she does go to live with your sister?
There are lots of people who live with family for a bit and eventually end up in assisted living. Just because she is moving in with your sister doesn't mean that's going to be a suitable place forever.
It is not necessary to make a big deal about how you are looking at these things or argue with her about where your mom will live. You can just look into them just in case for later.
posted by yohko at 5:32 PM on April 16 [3 favorites]
There are lots of people who live with family for a bit and eventually end up in assisted living. Just because she is moving in with your sister doesn't mean that's going to be a suitable place forever.
It is not necessary to make a big deal about how you are looking at these things or argue with her about where your mom will live. You can just look into them just in case for later.
posted by yohko at 5:32 PM on April 16 [3 favorites]
There is an Area Agency on Aging for every area of the US; this is their specialty, call them. If your Mom stays with Sister, you may be able to pay for some cleaning, cooking, laundry, etc., help which would reduce some strain on your sister.
posted by theora55 at 6:30 PM on April 16 [4 favorites]
posted by theora55 at 6:30 PM on April 16 [4 favorites]
Best answer: Even if your sister only lives a few minutes away from your mom, having to manage two separate households of people who need caretaking is no small feat. It may well be that the convenience of having everyone under one roof will offset any stress it may cause, at least in the short term. Your sister is correct in that Medicare will not pay for assisted living or other services your mother will need - is she willing to collaborate with you on accessing services for the aging so you can see what she qualifies for? Helping your sister by taking the lead on applying for these services instead of quibbling over your mom's living situation will likely be more productive in the long run.
If your mother can't care for herself then the need to rehome the cat is sadly a question of when, not if.
posted by fox problems at 8:25 PM on April 16 [4 favorites]
If your mother can't care for herself then the need to rehome the cat is sadly a question of when, not if.
posted by fox problems at 8:25 PM on April 16 [4 favorites]
You should do all the research and identify any and all available local support. Compile it and have it available but do not force it on your sister.
The situation will evolve and it will come in useful at some point but for now your sister has a plan that she wants to pursue so let her pursue it.
Also, your sister will taken on significant extra care responsibilities/will be spread a lot more thinly. Ask her what remote support she would find helpful.
Could you pay for help for her to reduce her burden in areas that do not relate to your mother_
What is important is that this is not what you would find helpful or think she would find helpful but something she would actually find helpful - e.g. a cleaner 1x week for x hrs, or getting somebody to take mother out to weekly x at the senior centre or lawn mowing or a regular teen activity related expense or whatever it may be. Does your mother have mobility needs and would your sister have to make modifications to her home to accommodate these? And then you pay or contribute to payment for whatever it is.
Can you visit for a few days to clear out your mother's home / stay with mother in your sister's home while sister and her family get a vacation or break etc?
In addition, there will be a lot of admin/organisational things, a lot of that could be done remotely for the most part - things like putting in place POA, medical appointments or researching options to re-home the cat etc.
posted by koahiatamadl at 3:36 AM on April 17 [1 favorite]
The situation will evolve and it will come in useful at some point but for now your sister has a plan that she wants to pursue so let her pursue it.
Also, your sister will taken on significant extra care responsibilities/will be spread a lot more thinly. Ask her what remote support she would find helpful.
Could you pay for help for her to reduce her burden in areas that do not relate to your mother_
What is important is that this is not what you would find helpful or think she would find helpful but something she would actually find helpful - e.g. a cleaner 1x week for x hrs, or getting somebody to take mother out to weekly x at the senior centre or lawn mowing or a regular teen activity related expense or whatever it may be. Does your mother have mobility needs and would your sister have to make modifications to her home to accommodate these? And then you pay or contribute to payment for whatever it is.
Can you visit for a few days to clear out your mother's home / stay with mother in your sister's home while sister and her family get a vacation or break etc?
In addition, there will be a lot of admin/organisational things, a lot of that could be done remotely for the most part - things like putting in place POA, medical appointments or researching options to re-home the cat etc.
posted by koahiatamadl at 3:36 AM on April 17 [1 favorite]
Best answer: Loads of sensible stuff here - agree it's likely that ultimately she will need full-time care, but probably sister taking it on first is right (she might also have a lot of guilt or expectation that she HAS to do it; my grandfather did when his wife went this way) and logical as many above have said. I think the research is for you to do, but not share until necessary/sister asked. I think she will find it more stressful than she's imagining (especially as things progress, or like you say other life stresses add in), and when she's seeing the bigger picture you'll probably find you're pushing more at an open door.
posted by london explorer girl at 6:25 AM on April 17 [1 favorite]
posted by london explorer girl at 6:25 AM on April 17 [1 favorite]
Bit of a wet blanket here but raising the question of why she "must" go to your sister, is there, for example, a family home that will be sold and where your sister assumes those funds will go to mom's care, remodelling for accessibility etc?
posted by Iteki at 8:29 AM on April 17
posted by Iteki at 8:29 AM on April 17
Response by poster: Wow! This is giving me a lot to think about, but I am definitely getting the upshot that Mom will be okay with my sister until she can't be anymore.
Additional info from the comments:
She has Medicare; her sole source of income is her SSN cheque.
She rents an apartment; there has never been a family home to sell. I'll level with you guys: my mom has nothing. She owns nothing of financial value. Historically, my parents were awful with money and unfortunately, that means retirement was never planned for or maybe got derailed at some point.
I have offered to come down and help her, and she gently rebuffs me, saying that she will let me know when I am needed. That's fine. I can wait but I do remind her that I am here if needed.
Honestly, a lot of this comes down to guilt on my part. I cannot help that my life is in another country so I feel pretty helpless in this whole situation. I am working on this in therapy.
My sister and her family own a hunting dog, so the cat definitely cannot live in their home. I want to try and find someone who will let her visit the cat if she moves in with my sister because she really is very attached. I'm a cat person, so I get it.
I wanted to tackle the possible LTC stuff because I sense that it is overwhelming from a paperwork standpoint, but maybe it's better to collect info quietly and have it on hand if needed.
Financially, my husband and I can contribute but not often. We are doing okay but like anyone right now, shit is precarious. My BiL is very controlling with their money and has decidedly Southern male patriarchal views, so I can't talk money without talking to him, though he prefers to talk to my husband in those matters.
I definitely appreciate you all giving me some perspective in that having a family member care for her is a good choice until it just can't be. It makes me back down in my zeal to feel like I'm contributing.
posted by Kitteh at 9:27 AM on April 17 [4 favorites]
Additional info from the comments:
She has Medicare; her sole source of income is her SSN cheque.
She rents an apartment; there has never been a family home to sell. I'll level with you guys: my mom has nothing. She owns nothing of financial value. Historically, my parents were awful with money and unfortunately, that means retirement was never planned for or maybe got derailed at some point.
I have offered to come down and help her, and she gently rebuffs me, saying that she will let me know when I am needed. That's fine. I can wait but I do remind her that I am here if needed.
Honestly, a lot of this comes down to guilt on my part. I cannot help that my life is in another country so I feel pretty helpless in this whole situation. I am working on this in therapy.
My sister and her family own a hunting dog, so the cat definitely cannot live in their home. I want to try and find someone who will let her visit the cat if she moves in with my sister because she really is very attached. I'm a cat person, so I get it.
I wanted to tackle the possible LTC stuff because I sense that it is overwhelming from a paperwork standpoint, but maybe it's better to collect info quietly and have it on hand if needed.
Financially, my husband and I can contribute but not often. We are doing okay but like anyone right now, shit is precarious. My BiL is very controlling with their money and has decidedly Southern male patriarchal views, so I can't talk money without talking to him, though he prefers to talk to my husband in those matters.
I definitely appreciate you all giving me some perspective in that having a family member care for her is a good choice until it just can't be. It makes me back down in my zeal to feel like I'm contributing.
posted by Kitteh at 9:27 AM on April 17 [4 favorites]
You might want to start researching Medicaid now to see if she is eligible. Medicare has copays plus the dreaded doughnut hole of prescription drug coverage so the patients share can add up to a lot of money. If she is eligible for medicaid, it will start to help with costs right away plus already be in effect if she needs nursing home care.
Here is an overview of South Caroline.
She will qualify now if her income is below $20783.
posted by metahawk at 12:08 PM on April 17 [1 favorite]
Here is an overview of South Caroline.
She will qualify now if her income is below $20783.
posted by metahawk at 12:08 PM on April 17 [1 favorite]
If she has no assets ( some people can have life insurance policies with cash out values or a too expensive burial plot or other random things that can count as assets that people don't necessarily concider assets but medicaid can) and she is low income then she should qualify for medicaid.
Sometimes if people are above a spenddown limit they can spend a certian amount on healthcare per month to qualify for medicaid. Talk to someone like an eldercare advisor in this stuff in her state to get a handle on those rules.
Some people are on MMAI plans ( this is a medicare medicaid alignment initiative plan) where they have both but it is one card. People get confused about this sometimes.
Note that your mother's SSI check will go to the facility when admitted to one aside from an small allotment ( here in IL it is 30USD). Sometimes family members or patients themselves may have reasons to keep someone out of a facility that are financial. Especially because your the parent will no longer be able to afford say a cellphone bill or the only flavor ensure that she will drink.
It also just helps to have part of the check go to the mortage/ utilities for the person doing the caregiving. I'm not saying this is a part of your sister's motivation but it does happen and for some people it is a part of their motivation.
If she's medicaid eligible she also may qualify for help at home through the home based community services waivers.
posted by AlexiaSky at 2:23 PM on April 17 [1 favorite]
Sometimes if people are above a spenddown limit they can spend a certian amount on healthcare per month to qualify for medicaid. Talk to someone like an eldercare advisor in this stuff in her state to get a handle on those rules.
Some people are on MMAI plans ( this is a medicare medicaid alignment initiative plan) where they have both but it is one card. People get confused about this sometimes.
Note that your mother's SSI check will go to the facility when admitted to one aside from an small allotment ( here in IL it is 30USD). Sometimes family members or patients themselves may have reasons to keep someone out of a facility that are financial. Especially because your the parent will no longer be able to afford say a cellphone bill or the only flavor ensure that she will drink.
It also just helps to have part of the check go to the mortage/ utilities for the person doing the caregiving. I'm not saying this is a part of your sister's motivation but it does happen and for some people it is a part of their motivation.
If she's medicaid eligible she also may qualify for help at home through the home based community services waivers.
posted by AlexiaSky at 2:23 PM on April 17 [1 favorite]
Just speaking from the PTSD perspective: often people with PTSD are terrible at managing their *own* lives but really great at managing *other* people’s lives: it’s a way of displacing the trauma and helps to handle some of the issues around uncertainty. For many people with PTSD, having someone else to care take actually helps them, not hurts them. This is counterintuitive, but true. It is possible having your mother in a managed facility your sister can’t control would be more aggravating than having her under your sisters care.
posted by corb at 2:31 PM on April 17 [3 favorites]
posted by corb at 2:31 PM on April 17 [3 favorites]
Wow that’s a lot. Completely appreciate your concern for your sister (and mom).
Listening to her vent (without offering opinions, hard as that may be) is the best you can do. That is not a small thing, by the way.
Want to recommend paying rent or mortgage through one of those visas that has great deals on air miles or aeroplan points so you can visit more often. They’re usually high interest, but if you’re good (tbh, kind of have to be perfect) about paying it off ahead of time, those points can rack up. If/when there is a need or use for them.
posted by cotton dress sock at 2:50 PM on April 17
Listening to her vent (without offering opinions, hard as that may be) is the best you can do. That is not a small thing, by the way.
Want to recommend paying rent or mortgage through one of those visas that has great deals on air miles or aeroplan points so you can visit more often. They’re usually high interest, but if you’re good (tbh, kind of have to be perfect) about paying it off ahead of time, those points can rack up. If/when there is a need or use for them.
posted by cotton dress sock at 2:50 PM on April 17
Lots of good advice here. I'd like to add that the AlzConnected forum is helpful with all of these issues and more if you hit snags implementing the advice you've gotten here.
At some point, hiring a geriatric care manager can give you and your sister an objective look at the question "what care needs does mom have now and how can they be met?" They can also be very helpful with local resources. And most importantly here, they can speed up the access to medicaid, get you on waiting lists, etc.
Another way to get the scoop on local stuff is a local support group if your sister can possibly manage to attend or if you can zoom in. Churches and libraries often host and you can find a vetted caregiver that can take one shift a week or a good respite program so that the caregiving family can take a week or so off. Or the best local prices on spendy things like Depends, special protein drinks, etc.
All the research you do now is, unfortunately, going to pay off later. If she's ok now, great, but start planning the next step and keep doing this all the way through. Also consider possibilities such as what happens if sis is too ill to caregive. The care manager can be a big help here.
It is true that the "away" sibling often causes the local sibling stress, but this is often because the away sibling thinks the parent is doing much better than the caretaker describes. That does not seem to be the case here.
posted by egk at 5:43 AM on April 18
At some point, hiring a geriatric care manager can give you and your sister an objective look at the question "what care needs does mom have now and how can they be met?" They can also be very helpful with local resources. And most importantly here, they can speed up the access to medicaid, get you on waiting lists, etc.
Another way to get the scoop on local stuff is a local support group if your sister can possibly manage to attend or if you can zoom in. Churches and libraries often host and you can find a vetted caregiver that can take one shift a week or a good respite program so that the caregiving family can take a week or so off. Or the best local prices on spendy things like Depends, special protein drinks, etc.
All the research you do now is, unfortunately, going to pay off later. If she's ok now, great, but start planning the next step and keep doing this all the way through. Also consider possibilities such as what happens if sis is too ill to caregive. The care manager can be a big help here.
It is true that the "away" sibling often causes the local sibling stress, but this is often because the away sibling thinks the parent is doing much better than the caretaker describes. That does not seem to be the case here.
posted by egk at 5:43 AM on April 18
Response by poster: Listening to her vent (without offering opinions, hard as that may be) is the best you can do. That is not a small thing, by the way.
I do this! I am happy to do so because I know that my sister doesn't have the kind of supports she needs in her life. She feels very lonely (in her words) because she has no one to really confide in except me and my best friend (who has been part of her life for 20 years and cares about my sister too).
It is true that the "away" sibling often causes the local sibling stress, but this is often because the away sibling thinks the parent is doing much better than the caretaker describes. That does not seem to be the case here.
I can tell that my mom masks when she talks to me so yeah, I know she is not doing as well as she thinks she is. I consider my sister's narrative to be more reliable when she visits and assists my mom.
posted by Kitteh at 6:08 AM on April 18 [1 favorite]
I do this! I am happy to do so because I know that my sister doesn't have the kind of supports she needs in her life. She feels very lonely (in her words) because she has no one to really confide in except me and my best friend (who has been part of her life for 20 years and cares about my sister too).
It is true that the "away" sibling often causes the local sibling stress, but this is often because the away sibling thinks the parent is doing much better than the caretaker describes. That does not seem to be the case here.
I can tell that my mom masks when she talks to me so yeah, I know she is not doing as well as she thinks she is. I consider my sister's narrative to be more reliable when she visits and assists my mom.
posted by Kitteh at 6:08 AM on April 18 [1 favorite]
You are not logged in, either login or create an account to post comments
I would suggest a compromise. 3 months with sister, and you use that time to investigate, and your sister has time to evaluate the situation, and you have time to come up other solutions. And if your sister knows that at 3 months, she can bow out gracefully, it might help to keep the stress at bay. And perhaps, that the cat can stay for those months to ease the transition.
posted by Ftsqg at 1:31 PM on April 16 [31 favorites]