Should my father, who has dementia, come to stay with me for a few days?
January 21, 2020 1:17 PM Subscribe
My 90-year-old father has serious dementia and is very physically frail. My mom has it in her head that my wife and I should have him stay at our house for a week or so, which seems like a terrible idea to me as he would be in unfamiliar surroundings, we have lots of stairs and he wouldn’t have access to the hospice team he sees every week … but maybe I’m wrong? Would it be OK for us to take him for at least a weekend to give my mom a break from caretaking?
He should be in a skilled nursing facility, but my mom refuses to put him in one because Medicaid would pay for it and she thinks they will take all the proceeds from the sale of the house that she plans to sell after he’s gone. He is in hospice through Medicare, and a team of people comes by throughout the week to check on him, give him showers, etc.
He should be in a skilled nursing facility, but my mom refuses to put him in one because Medicaid would pay for it and she thinks they will take all the proceeds from the sale of the house that she plans to sell after he’s gone. He is in hospice through Medicare, and a team of people comes by throughout the week to check on him, give him showers, etc.
Would you be able to go to him and visit him there? It is terribly disruptive to change environments and routines. Perhaps swap houses with your mom?
posted by tipsyBumblebee at 1:26 PM on January 21, 2020 [13 favorites]
posted by tipsyBumblebee at 1:26 PM on January 21, 2020 [13 favorites]
Response by poster: I should have added that I have offered to come stay with him and even pay for her to stay in a hotel but she really wants him to come stay with me
posted by Clustercuss at 1:27 PM on January 21, 2020
posted by Clustercuss at 1:27 PM on January 21, 2020
No. It is not reasonable. You, taking care of him in-place, is reasonable, if a stretch. Transporting him, keeping him in an unfamiliar place and having to maintain constant supervision would stress him out terribly.
posted by notsnot at 1:31 PM on January 21, 2020 [73 favorites]
posted by notsnot at 1:31 PM on January 21, 2020 [73 favorites]
Best answer: Be firm that you both caring for him at your home is an absolute no and that there's not going to be any negotiation about it. It would be extremely stressful and dangerous for him. Try to redirect her into taking a week off to either travel somewhere or even go for a staycation at a hotel or Airbnb in her town. She clearly needs a break and it's good that she's asking for one, but she can't take one at the dangerous expense of your father's well-being.
posted by quince at 1:40 PM on January 21, 2020 [23 favorites]
posted by quince at 1:40 PM on January 21, 2020 [23 favorites]
Go stay there so she can have a break, and get her an appointment with some kind of legitimate, trustworthy individual that can advise on what Medicare can and cannot do to her house. I am pretty sure the thing she's saying will happen does not exactly work that way and why not make these decisions based on information rather than rumor or assumption?
posted by Lyn Never at 1:49 PM on January 21, 2020 [13 favorites]
posted by Lyn Never at 1:49 PM on January 21, 2020 [13 favorites]
Medicaid almost certainly will require that your parents spend down their assets considerably before it covers the cost of a skilled nursing facility, and she is right to worry about this. You need to hire someone who knows the system in your state to advise you on how/if to move forward with that while still protecting their assets as much as possible.
In the meantime, another vote for you go to him to caretake and she goes to another place for R&R. She may *want* him to go to you, but that would be extremely disruptive and unsafe for him, please do not even entertain this notion. You should be able to get "backup" for this argument from the social worker who is part of his hospice team.
posted by mccxxiii at 1:56 PM on January 21, 2020 [28 favorites]
In the meantime, another vote for you go to him to caretake and she goes to another place for R&R. She may *want* him to go to you, but that would be extremely disruptive and unsafe for him, please do not even entertain this notion. You should be able to get "backup" for this argument from the social worker who is part of his hospice team.
posted by mccxxiii at 1:56 PM on January 21, 2020 [28 favorites]
There was a MeFi discussion re: Medicaid recovery just a couple of weeks ago.
posted by jacquilynne at 1:56 PM on January 21, 2020 [3 favorites]
posted by jacquilynne at 1:56 PM on January 21, 2020 [3 favorites]
Is your mom trying to get something done in the house (repair appointments, painting in walk-through area or his bedroom, deep cleaning, etc.) that his presence (and need) is making difficult-to-impossible to achieve?
posted by Iris Gambol at 2:02 PM on January 21, 2020 [7 favorites]
posted by Iris Gambol at 2:02 PM on January 21, 2020 [7 favorites]
Best answer: Been there, done that with my father in law a few years ago. Bad idea. Significant changes in environment can and will very likely be extremely distressing to him. Your mom obviously needs and deserves a break, but kicking him out of the house is not a good way to do this.
I suggest you try to get the hospice team to explain this to your mom.
posted by qurlyjoe at 2:18 PM on January 21, 2020 [6 favorites]
I suggest you try to get the hospice team to explain this to your mom.
posted by qurlyjoe at 2:18 PM on January 21, 2020 [6 favorites]
No, you should pass on that.
You say he has "serious dementia", has he been diagnosed with Alzheimer? You mention that hospice is involved, there should be a process that will offer respite care for the primary care-giver. Check into that. Is there a hospice facility where he could be admitted short-term. It is not an unusual occurrence and they would be used to this situation.
You also correctly mention unfamiliar surroundings and STAIRS!. If he falls in your house, what are the implications? Ask your homeowners insurance carrier, the answer may be interesting.
I understand you want to help but you really have to consider yourself (and family) first. I am currently going through something similar; you really have to take care of yourself.
Have you consulted a lawyer that specializes in Elder law? There is probably a way to create a situation where all the assets are not lost to Medicare.
Good Luck
posted by sandpine at 2:25 PM on January 21, 2020 [3 favorites]
You say he has "serious dementia", has he been diagnosed with Alzheimer? You mention that hospice is involved, there should be a process that will offer respite care for the primary care-giver. Check into that. Is there a hospice facility where he could be admitted short-term. It is not an unusual occurrence and they would be used to this situation.
You also correctly mention unfamiliar surroundings and STAIRS!. If he falls in your house, what are the implications? Ask your homeowners insurance carrier, the answer may be interesting.
I understand you want to help but you really have to consider yourself (and family) first. I am currently going through something similar; you really have to take care of yourself.
Have you consulted a lawyer that specializes in Elder law? There is probably a way to create a situation where all the assets are not lost to Medicare.
Good Luck
posted by sandpine at 2:25 PM on January 21, 2020 [3 favorites]
is someone from the hospice team there daily? if not, is it possible for one to be while your mother gets a break?
posted by brujita at 2:35 PM on January 21, 2020
posted by brujita at 2:35 PM on January 21, 2020
There is some confusion between Medicare and Medicaid. The second is state run so the rules vary by state but that is the program that pays for long-term/nursing home care. The house will not be seized while your mother lives there but can be used to recover money after she dies. My mother had to pay with her own meager assets until a certain balance was reached but she was widowed and didn't own property so her situation was different. Calling the program office in your parents state should get some answers to her questions.
posted by Botanizer at 2:37 PM on January 21, 2020 [1 favorite]
posted by Botanizer at 2:37 PM on January 21, 2020 [1 favorite]
I'm a caregiver for my wife (though we are in our late 30s). Caregiving is really hard, and I'm sure your mom really does needs the break. It's possible that she's so burned out that packing, traveling, etc. is just too much friction for her and all she can do is crash at her own house. If that is the case, I totally get that.
That being said, I don't know what you should do here. It sounds like a tough situation all around. If having your father stay with you is too much, try to find other ways to take things off your mom's plate. Whatever you end up doing, any inconvenience to you will likely be small compared to the relief she will get.
posted by bajema at 2:49 PM on January 21, 2020 [1 favorite]
That being said, I don't know what you should do here. It sounds like a tough situation all around. If having your father stay with you is too much, try to find other ways to take things off your mom's plate. Whatever you end up doing, any inconvenience to you will likely be small compared to the relief she will get.
posted by bajema at 2:49 PM on January 21, 2020 [1 favorite]
no, he can't travel, poor guy. But she obviously needs a break outside his presence.
How about SHE comes to live at your place, taking a restful break, while you go be the caretaker at their home, for a few days? You can stock your fridge, make sure the beds are comfortable, give her the wifi password, and let her completely off the hook for chores for the duration. Much less stressful than having her go to a hotel etc.
posted by fingersandtoes at 2:57 PM on January 21, 2020 [14 favorites]
How about SHE comes to live at your place, taking a restful break, while you go be the caretaker at their home, for a few days? You can stock your fridge, make sure the beds are comfortable, give her the wifi password, and let her completely off the hook for chores for the duration. Much less stressful than having her go to a hotel etc.
posted by fingersandtoes at 2:57 PM on January 21, 2020 [14 favorites]
Best answer: One resource you have available is the hospice agency. They have a social worker and a clergy person who are 100% there to support your family around this kind of thorny issue. They are literally required by Medicare to provide these services, not just to your father, but to the whole family. Call the hospice agency directly, ask for a call back from the social worker and then ask their recommendations for achieving respite for your mom. Perhaps with their encouragement she will take you up on the offer of going to a hotel for a few days. If the social worker is not helpful or does not have a style that gels with you, try the clergy person (they support all denominations and non-denominations, and are simply there to support your spiritual well being, whatever that means to you)
posted by latkes at 2:58 PM on January 21, 2020 [7 favorites]
posted by latkes at 2:58 PM on January 21, 2020 [7 favorites]
Your mother is crying out for help. Get her some, ASAP.
Look into respite for your father—hospice can help locate this. I know a 101 year old on hospice who just had 3 days of respite because her late 70s-aged caregiver has to have a medical procedure.
Also, research assisted facilities and be ready to pick one in a crisis. This is not a sustainable situation. Be ready for it to change.
Finally, get the information to answer your mother’s concerns. Ask his Medicaid caseworker to explain about how she can protect herself. This is what they do.
posted by Riverine at 3:37 PM on January 21, 2020 [5 favorites]
Look into respite for your father—hospice can help locate this. I know a 101 year old on hospice who just had 3 days of respite because her late 70s-aged caregiver has to have a medical procedure.
Also, research assisted facilities and be ready to pick one in a crisis. This is not a sustainable situation. Be ready for it to change.
Finally, get the information to answer your mother’s concerns. Ask his Medicaid caseworker to explain about how she can protect herself. This is what they do.
posted by Riverine at 3:37 PM on January 21, 2020 [5 favorites]
Talk to your mum about why she wants him out of the house & her to stay there. Is she getting something done around the house, is she getting something medical sorted out for herself, does she just want a break in her own home for a week without having to worry about him? Having him come to your place is a terrible idea for him but maybe talk to his hospice people about some sort of short stay place for him & if you can afford it offer to pay for it so she get's the break in her home if that's what she wants.
posted by wwax at 4:37 PM on January 21, 2020 [6 favorites]
posted by wwax at 4:37 PM on January 21, 2020 [6 favorites]
Is it possible the reason your Mum wants you to care for your Dad in your home, rather than her home, is that she's going to refuse to accept him back?
Eg she's at breaking point and this is a stealth plan to get your Dad into your home for 3 months or longer...
posted by Murderbot at 4:53 PM on January 21, 2020 [19 favorites]
Eg she's at breaking point and this is a stealth plan to get your Dad into your home for 3 months or longer...
posted by Murderbot at 4:53 PM on January 21, 2020 [19 favorites]
People with memory and/or cognitive problems can get dramatically more disoriented when they have to figure out a new setting. I'd avoid moving him unless you're permanently moving him into skilled nursing.
My experience was that my mom was allowed to continue to own her house while receiving skilled nursing care. But if we had sold the house, the resulting pile of cash would have been regarded as an asset that we would either have to have 'spent down', or that would have been eligible for 'estate recovery' when she died.
posted by Sing Or Swim at 5:24 PM on January 21, 2020 [2 favorites]
My experience was that my mom was allowed to continue to own her house while receiving skilled nursing care. But if we had sold the house, the resulting pile of cash would have been regarded as an asset that we would either have to have 'spent down', or that would have been eligible for 'estate recovery' when she died.
posted by Sing Or Swim at 5:24 PM on January 21, 2020 [2 favorites]
When my dad was in hospice (not for dementia, though) he had a notion to travel a couple of hours away to the ocean before he got too sick to travel. The hospice had a cooperative arrangement with a hospice in another city. This distant hospice would perform all the normal hospice services, but in the other location. Is this a possibility for you? I think moving your father is not a good plan, but if your mother insists maybe this would help.
I agree though that respite care is what's needed, and again, this is something my dad's hospice offered. If my stepmother needed to travel or take a break, my dad could be admitted to the in-patient hospice facility for several days. This was not unlimited, but if your mom talks to the nurse or hospice social worker - which every hospice must have - perhaps a solution can be found that doesn't include moving your dad to a completely unfamiliar environment. I agree with others that this can be dangerously debilitating for those with dementia. Leaning on the hospice for help might yield real help, but she needs to ask.
The social worker can probably help her understand the financial requirements when applying for Medicaid. The spending-down issue is very real, and people who try to move assets to avoid this need to do it years, like 5 years, before applying. They are rigid and the amount of assets you are able to keep is alarmingly low. I currently have an aunt who is living in a nursing home and paying out of pocket. It won't be long before she is out of financial assets and will need to sell her home to continue staying there. When that money runs out she'll be eligible for Medicaid.
posted by citygirl at 7:07 PM on January 21, 2020
I agree though that respite care is what's needed, and again, this is something my dad's hospice offered. If my stepmother needed to travel or take a break, my dad could be admitted to the in-patient hospice facility for several days. This was not unlimited, but if your mom talks to the nurse or hospice social worker - which every hospice must have - perhaps a solution can be found that doesn't include moving your dad to a completely unfamiliar environment. I agree with others that this can be dangerously debilitating for those with dementia. Leaning on the hospice for help might yield real help, but she needs to ask.
The social worker can probably help her understand the financial requirements when applying for Medicaid. The spending-down issue is very real, and people who try to move assets to avoid this need to do it years, like 5 years, before applying. They are rigid and the amount of assets you are able to keep is alarmingly low. I currently have an aunt who is living in a nursing home and paying out of pocket. It won't be long before she is out of financial assets and will need to sell her home to continue staying there. When that money runs out she'll be eligible for Medicaid.
posted by citygirl at 7:07 PM on January 21, 2020
I flew to my parent's home in another state for 10 days every other month for 2 years to help give my mom a break from caretaking my dad with vascular dementia. It is a BAD idea to move him, period - his security is in everything staying the same. But your mom definitely needs two things - a break, and a caretaking support group.
This is the time to spend some time with them, help her find and get started in a caretaking support group, and appreciate the days you have left with your dad. The two years I spent helping was definitely hard - the hardest, longest goodbye I ever had - but the days and memories were sweet and I'm so glad I did it. It's a privilege to be able to give back to them after their lifetime of sacrifice for and giving to me.
posted by summerstorm at 8:40 PM on January 21, 2020 [1 favorite]
This is the time to spend some time with them, help her find and get started in a caretaking support group, and appreciate the days you have left with your dad. The two years I spent helping was definitely hard - the hardest, longest goodbye I ever had - but the days and memories were sweet and I'm so glad I did it. It's a privilege to be able to give back to them after their lifetime of sacrifice for and giving to me.
posted by summerstorm at 8:40 PM on January 21, 2020 [1 favorite]
I can understand her wanting to have some peace, in her own home, for a few days. Having peace in a hotel isn't the same -- she may just want to get _stuff done_ or even _relax_ in a way that's impossible somewhere else.
I'm not suggesting you help her achieve this in the way she is suggesting -- just bringing it up so that you can factor this totally legitimate, but difficult-to-achieve, desire into your eventual solution.
posted by amtho at 11:27 PM on January 21, 2020
I'm not suggesting you help her achieve this in the way she is suggesting -- just bringing it up so that you can factor this totally legitimate, but difficult-to-achieve, desire into your eventual solution.
posted by amtho at 11:27 PM on January 21, 2020
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