How do we move an elderly relative with OCD from one state to another?
May 17, 2015 9:56 AM Subscribe
Our relative lives in one state. We live in another. She has lived her entire life within a 1-mile radius and 70 years on one city block. She's rarely traveled. She's lived in her current house for 4 decades. She has deep anxiety/anger issues and is OC. She had planned to live and die in the same place. It looks like that will not be possible. How do we make this move the safest & sanest way possible for all concerned?
Our family member's health is failing. She's lived alone for 40 years. She has her routine and her life, and she's not fond of other people. She's going to have to move to a nursing home near us in the near future so we can see she is taken care of. She will go from ambulatory & independent to bedfast and dependent in a very short time.
Everything that has been her source of security in her life will be gone.
We're looking for help to make this move the easiest possible for her, for us, for the nursing home. There is one logical nursing home - it might not be the best, but it will be the best for her. We'll make an appointment to see it this week. What do we need to tell them? What should we be looking for?
She'll be selling a house and crossing state lines. What legal bombs are waiting for us? Does she need a new will/power of attorney?
If you've been through this situation, what do you wish you'd known going into it that you know now?
How do we help an isolated loner with OCD adapt to a nursing home full of other people?
Our family member's health is failing. She's lived alone for 40 years. She has her routine and her life, and she's not fond of other people. She's going to have to move to a nursing home near us in the near future so we can see she is taken care of. She will go from ambulatory & independent to bedfast and dependent in a very short time.
Everything that has been her source of security in her life will be gone.
We're looking for help to make this move the easiest possible for her, for us, for the nursing home. There is one logical nursing home - it might not be the best, but it will be the best for her. We'll make an appointment to see it this week. What do we need to tell them? What should we be looking for?
She'll be selling a house and crossing state lines. What legal bombs are waiting for us? Does she need a new will/power of attorney?
If you've been through this situation, what do you wish you'd known going into it that you know now?
How do we help an isolated loner with OCD adapt to a nursing home full of other people?
You can contact the local Area Agency on Aging (AoA), which may offer referrals to a variety of resources, including supportive and caregiver services, elder justice and health promotion programs.
For legal questions, the MeFi Wiki Get a lawyer page has information about how to find an attorney and free or low-cost resources, and collected AskMes about Disability/Elder legal issues and Wills/Trusts.
posted by Little Dawn at 10:26 AM on May 17, 2015
For legal questions, the MeFi Wiki Get a lawyer page has information about how to find an attorney and free or low-cost resources, and collected AskMes about Disability/Elder legal issues and Wills/Trusts.
posted by Little Dawn at 10:26 AM on May 17, 2015
She's going to have to move to a nursing home near us in the near future so we can see she is taken care of.
This doesn't sound like a good idea to me at all if it's not what she wants. Her health is failing; ok that sounds bad, and this sounds bad too but, how old is she? Does she want to improve her health? Does it seem likely that living in a nursing home will improve her health? It doesn't seem likely to me. I've worked at a nursing home and I've had relatives in nursing homes and it's not at all self-evident to me that nursing home = improvement. Does she want to be looked after? Does she want to live 5 more years in sterile, noisy misery or 1 more year in the life she chose? I know you mean well, and you want this because you think it's best, but I wonder if you're aware that there's nothing in your question that suggests you'll actually be helping her in any way. Use whatever money you were going to spend on this to help her stay in her home and live out the life she chose.
posted by bleep at 10:49 AM on May 17, 2015 [4 favorites]
This doesn't sound like a good idea to me at all if it's not what she wants. Her health is failing; ok that sounds bad, and this sounds bad too but, how old is she? Does she want to improve her health? Does it seem likely that living in a nursing home will improve her health? It doesn't seem likely to me. I've worked at a nursing home and I've had relatives in nursing homes and it's not at all self-evident to me that nursing home = improvement. Does she want to be looked after? Does she want to live 5 more years in sterile, noisy misery or 1 more year in the life she chose? I know you mean well, and you want this because you think it's best, but I wonder if you're aware that there's nothing in your question that suggests you'll actually be helping her in any way. Use whatever money you were going to spend on this to help her stay in her home and live out the life she chose.
posted by bleep at 10:49 AM on May 17, 2015 [4 favorites]
Does she have a regular doctor or a mental health professional that she sees? Because their input would be valuable.
I expect she is going to hate being moved, especially as a forced choice.
I almost wanted to say "move her to your 2nd choice nursing home first" because then when she absolutely hates what has happened, you can offer an improvement and maybe she will be happy with a sense of agency when she is able to switch. (I thought I was just pulling this out of thin air, but we coaxed my grandmother into moving into a room in an assisted complex by decorating it with her stuff and her photos. She was disoriented at this moderately large facility and moved from that place to a room in a house that offered care for 4 residents and was happier there. She had never liked driving and had been paying other people to do her errands for sometime, so she didn't fade like someone whose freedom had abruptly been removed. She seemed pretty happy and lived in this "home" for about two years. (She only had one grown child and there was uh-uh no way that they were going to cohabit successfully.)
Agency is important. People who have choices, even really effing small choices like which plant they would like in their room, seem to thrive better in assisted living situations. (citing Freidan's book Fountain of Age)
Some deep disquiet down inside me is fearfully saying that if your relative can't cope and is freaked out, then she is going to end up sedated. That kind of thing is a gross imposition on her personhood, but its a short cut that can end up looking appealing to the people around her who are trying to cope with her needs and their own needs. I suppose it is possible that a small dose of anti-anxiety meds would improve her life without reducing her functioning. Crap. I feel like I opened a big can of worms that I'm not qualified to close. I really don't like the idea of medicating people without their consent.
Anyway, I'm speculating and I tend to have exaggerated worries. But I think it would be responsible for you to talk to someone who knows a lot about Elder Care to figure out how to investigate the ethics of any institution that might provide care for her. Go beyond whether the facility is clean and the staff is gentle to look at how much they are using medication to get the behavior that they want.
posted by puddledork at 11:39 AM on May 17, 2015 [1 favorite]
I expect she is going to hate being moved, especially as a forced choice.
I almost wanted to say "move her to your 2nd choice nursing home first" because then when she absolutely hates what has happened, you can offer an improvement and maybe she will be happy with a sense of agency when she is able to switch. (I thought I was just pulling this out of thin air, but we coaxed my grandmother into moving into a room in an assisted complex by decorating it with her stuff and her photos. She was disoriented at this moderately large facility and moved from that place to a room in a house that offered care for 4 residents and was happier there. She had never liked driving and had been paying other people to do her errands for sometime, so she didn't fade like someone whose freedom had abruptly been removed. She seemed pretty happy and lived in this "home" for about two years. (She only had one grown child and there was uh-uh no way that they were going to cohabit successfully.)
Agency is important. People who have choices, even really effing small choices like which plant they would like in their room, seem to thrive better in assisted living situations. (citing Freidan's book Fountain of Age)
Some deep disquiet down inside me is fearfully saying that if your relative can't cope and is freaked out, then she is going to end up sedated. That kind of thing is a gross imposition on her personhood, but its a short cut that can end up looking appealing to the people around her who are trying to cope with her needs and their own needs. I suppose it is possible that a small dose of anti-anxiety meds would improve her life without reducing her functioning. Crap. I feel like I opened a big can of worms that I'm not qualified to close. I really don't like the idea of medicating people without their consent.
Anyway, I'm speculating and I tend to have exaggerated worries. But I think it would be responsible for you to talk to someone who knows a lot about Elder Care to figure out how to investigate the ethics of any institution that might provide care for her. Go beyond whether the facility is clean and the staff is gentle to look at how much they are using medication to get the behavior that they want.
posted by puddledork at 11:39 AM on May 17, 2015 [1 favorite]
If your state doesn't have in-home services for the elderly like Little Dawn mentioned, you might consider a care home vs a nursing home. The difference is your relative would live in a house with only a handful of other elderly folks with 24-hr caregivers who she can beckon at will. The caregivers prepare meals and administer meds on schedule. She can have her own room and carry on, for the most part, as she has been. There would be living space where she could congregate with the other residents or not. It wouldn't be a stale environment like a nursing home and be much less stressful because there are fewer people living there.
I only mention this because my grandma was moved to a care home like this a couple years ago after fighting tooth and nail to stay in her home and she loves it. She now says she wishes she had done it years sooner. I mean it definitely took some time for her to get used to it, but she is thriving and has more weekly family visitors than she ever had when she was at home. She likes the security of being able to summon a caregiver with the push of a button. She had a life alert button at home, but wouldn't push it because she didn't want to bother the family, which drove us all a little bonkers, especially one night when she fell. If she had gone to a nursing home, I know she wouldn't be here today. Like your relative, my grandma was fiercely independent and would have never tolerated a nursing home environment or a roommate. She would have declined rapidly.
posted by wherever, whatever at 11:54 AM on May 17, 2015 [1 favorite]
I only mention this because my grandma was moved to a care home like this a couple years ago after fighting tooth and nail to stay in her home and she loves it. She now says she wishes she had done it years sooner. I mean it definitely took some time for her to get used to it, but she is thriving and has more weekly family visitors than she ever had when she was at home. She likes the security of being able to summon a caregiver with the push of a button. She had a life alert button at home, but wouldn't push it because she didn't want to bother the family, which drove us all a little bonkers, especially one night when she fell. If she had gone to a nursing home, I know she wouldn't be here today. Like your relative, my grandma was fiercely independent and would have never tolerated a nursing home environment or a roommate. She would have declined rapidly.
posted by wherever, whatever at 11:54 AM on May 17, 2015 [1 favorite]
Response by poster: I'll try not to thread sit. She's almost 90. She was given a choice of hospice or surgery. She chose neither. Neither is not a choice. She will have the surgery, after which, if she survives, it is likely she could live another year or two, but she will probably never walk again; she will probably be bedridden. She was given choices over the years that would allow her to stay in her home. She refused them. She is developing early stages of dementia. She can't live alone.
She has NO ONE in the city where she currently lives. Her family and friends are all dead. She lives in a neighborhood that has changed around her. Her cleaning lady is in her late 70's. Her driver is in her late 80's.
Living in a nursing home will not improve her health. We know that. We have held off as long as we possibly could. However, she cannot continue to live alone. Her house has become a prison. She has alienated everyone who has ever known her. We live hundreds of miles away, and she expects us to come and do her grocery shopping. We supported her staying in the house for the past 10 years, going there, doing her shopping, dealing with her medical emergencies. But she is now hospitalized at least once a month. We have lives, jobs, pets, and we can't commute hundreds of miles every week to keep her in her home. Plus, we have other family members we care about who live two thousand miles away in another direction.
Sight unseen, we are choosing a nursing home that is religiously aligned with her beliefs because that matters more to her than anything else. Religion is her sole refuge.
The doctors and social workers have told us she may not stay in her home. It's not a decision we are making lightly. So - not moving is not a choice. She cannot be put into a nursing home hundreds of miles away where we can give her no oversight. We need to know how to make this move as humane and successful as possible, given that it is not a positive process.
Web sites on elder care are helpful. Any suggestions for who to contact, how to manage the process, what order to proceed with would be helpful. She was just hospitalized. The plan is for her to go to rehab for two weeks, then go home for two to four weeks to build up her strength. I will make the drive - again - to get her settled in at home. She'll have the same battery of visiting nurses, OT, PT, and aides that she's had off and on for the past 3 years. Then, she will have her surgery and go into rehab. She will move here in August.
Please note - two of our main concerns are her OCD and her anxiety/anger issues. She has refused to address them all of her life. That is why she is utterly alone now. Given that not moving is not an option, how do we help her cope?
posted by clarkstonian at 11:56 AM on May 17, 2015
She has NO ONE in the city where she currently lives. Her family and friends are all dead. She lives in a neighborhood that has changed around her. Her cleaning lady is in her late 70's. Her driver is in her late 80's.
Living in a nursing home will not improve her health. We know that. We have held off as long as we possibly could. However, she cannot continue to live alone. Her house has become a prison. She has alienated everyone who has ever known her. We live hundreds of miles away, and she expects us to come and do her grocery shopping. We supported her staying in the house for the past 10 years, going there, doing her shopping, dealing with her medical emergencies. But she is now hospitalized at least once a month. We have lives, jobs, pets, and we can't commute hundreds of miles every week to keep her in her home. Plus, we have other family members we care about who live two thousand miles away in another direction.
Sight unseen, we are choosing a nursing home that is religiously aligned with her beliefs because that matters more to her than anything else. Religion is her sole refuge.
The doctors and social workers have told us she may not stay in her home. It's not a decision we are making lightly. So - not moving is not a choice. She cannot be put into a nursing home hundreds of miles away where we can give her no oversight. We need to know how to make this move as humane and successful as possible, given that it is not a positive process.
Web sites on elder care are helpful. Any suggestions for who to contact, how to manage the process, what order to proceed with would be helpful. She was just hospitalized. The plan is for her to go to rehab for two weeks, then go home for two to four weeks to build up her strength. I will make the drive - again - to get her settled in at home. She'll have the same battery of visiting nurses, OT, PT, and aides that she's had off and on for the past 3 years. Then, she will have her surgery and go into rehab. She will move here in August.
Please note - two of our main concerns are her OCD and her anxiety/anger issues. She has refused to address them all of her life. That is why she is utterly alone now. Given that not moving is not an option, how do we help her cope?
posted by clarkstonian at 11:56 AM on May 17, 2015
Search your county web page for elder services. I am sure someone would be happy to advise you. You could even call your county mental health providers to discuss the situation. Thank you for doing all of this for your relative. I know it is hard.
posted by wherever, whatever at 12:06 PM on May 17, 2015 [2 favorites]
posted by wherever, whatever at 12:06 PM on May 17, 2015 [2 favorites]
I get that this is super super hard. And, you guys have already done a lot. Let me just communicate my deep empathy - I get it. We did it and it was so hard. And you've been doing it for what sounds like a while. And that sounds really hard too.
It sounds like your relative doesn't want to move and will not do anything to aid or participate in this move. I would sort out the legality of this - I get that the doctors and social workers say "she cannot stay in her house" but this is not like the police saying "you can't stay in your house." Do you have legal guardianship to allow you to make these decisions on her behalf? Again - its sounds like you're in much the same place I was half a dozen years ago, frustrated by my Grandma's lack of willingness to make plans and arrangements which would have allowed her to stay in her home longer.
I felt a certain imperative for action. I love my Grandma. I had to do everything I could to protect her. But, I strongly feel looking back that the most loving thing I could have done would have been to let her stay - even if it meant she got to enjoy just 2-3 months eating moldy food, tripping over dirty clothes, bumping into walls, she would have experienced the end of her life on her terms.
I get that this is incredibly tough right now. But to the degree possible, I'd encourage you to take a breather and talk with your family members and others about this before moving forward. And if you feel this is the right thing to do, definitely get her her own room.
posted by arnicae at 12:10 PM on May 17, 2015 [7 favorites]
It sounds like your relative doesn't want to move and will not do anything to aid or participate in this move. I would sort out the legality of this - I get that the doctors and social workers say "she cannot stay in her house" but this is not like the police saying "you can't stay in your house." Do you have legal guardianship to allow you to make these decisions on her behalf? Again - its sounds like you're in much the same place I was half a dozen years ago, frustrated by my Grandma's lack of willingness to make plans and arrangements which would have allowed her to stay in her home longer.
I felt a certain imperative for action. I love my Grandma. I had to do everything I could to protect her. But, I strongly feel looking back that the most loving thing I could have done would have been to let her stay - even if it meant she got to enjoy just 2-3 months eating moldy food, tripping over dirty clothes, bumping into walls, she would have experienced the end of her life on her terms.
I get that this is incredibly tough right now. But to the degree possible, I'd encourage you to take a breather and talk with your family members and others about this before moving forward. And if you feel this is the right thing to do, definitely get her her own room.
posted by arnicae at 12:10 PM on May 17, 2015 [7 favorites]
You probably want to start with finding a geriatric or elder care social worker. Your local Area on Aging or Department of Aging and Adult Services can help. The hospital caring for your relative might be able to refer you to a geriatric social worker (a discharge planner would be the person to ask).
Once you have the social worker lined up, then you probably will want an elder-law specialist lawyer. As Arnicae points out - it can be a really vexed question whether you have any legal standing to compel your relative to move out of her home, especially if you don't have healthcare power of attorney. If you do not have power of attorney and your relative is not legally incompetent (and most courts are cautious about declaring legal incompetency, for understandable reasons) - you might not be able to compel your relative to move. I have friends who are going, or have gone through this, and it is a mess and exhausting.
Good luck to you and your relative.
posted by Rosie M. Banks at 12:19 PM on May 17, 2015
Once you have the social worker lined up, then you probably will want an elder-law specialist lawyer. As Arnicae points out - it can be a really vexed question whether you have any legal standing to compel your relative to move out of her home, especially if you don't have healthcare power of attorney. If you do not have power of attorney and your relative is not legally incompetent (and most courts are cautious about declaring legal incompetency, for understandable reasons) - you might not be able to compel your relative to move. I have friends who are going, or have gone through this, and it is a mess and exhausting.
Good luck to you and your relative.
posted by Rosie M. Banks at 12:19 PM on May 17, 2015
Best answer: The easiest thing to do would be to talk to the social worker at the hospital where she is currently staying. They will have resources and you can talk to them over the phone or via email.
Also, of course you have to get the legal guardianship and power of attorney, both medical and financial, and that requires a lawyer.
If you have medical power of attorney, and can legally speak to the doctor, then when you visit, speak to the doctor about medications that are helpful. For instance, my FIL had dementia and had to take Ativan, a common anti-anxiety medication. That may or may not be suitable for your relative, so I would ask what can be done to alleviate her symptoms. It is not a case of "drugging someone against their will," my FIL knew he was taking meds and he took it. Often visiting nurses can get elders to comply with taking their meds, while they might be angry or resistant to relatives because of family issues.
I am not sure about transport, if she will be able to ride in a car, etc., again, talk to the doctor and nurses and social worker to inquire about the best way to go about it without her getting agitated.
I will share one incident: my FIL was going to have surgery and by the time he got it scheduled, his dementia had proceeded to the point where he didn't really know why he was in the hospital. The surgeon called us (we had medical POA) and said he wasn't comfortable performing surgery due to his mental state. It also would not have prolonged his life substantially and the post-op would have been very stressful on him. Just FYI.
Make sure you take notes, keep copies of all paperwork in a folder, etc. Also make sure the house is secure and if she does go on hospice, don't tell people, because people on hospice are targets for drug thieves. We were advised to not even talk about it anywhere in public, such as at a restaurant, for this reason.
Good luck, it's rough, I hope you and your relative get the help you need.
posted by Marie Mon Dieu at 12:22 PM on May 17, 2015 [4 favorites]
Also, of course you have to get the legal guardianship and power of attorney, both medical and financial, and that requires a lawyer.
If you have medical power of attorney, and can legally speak to the doctor, then when you visit, speak to the doctor about medications that are helpful. For instance, my FIL had dementia and had to take Ativan, a common anti-anxiety medication. That may or may not be suitable for your relative, so I would ask what can be done to alleviate her symptoms. It is not a case of "drugging someone against their will," my FIL knew he was taking meds and he took it. Often visiting nurses can get elders to comply with taking their meds, while they might be angry or resistant to relatives because of family issues.
I am not sure about transport, if she will be able to ride in a car, etc., again, talk to the doctor and nurses and social worker to inquire about the best way to go about it without her getting agitated.
I will share one incident: my FIL was going to have surgery and by the time he got it scheduled, his dementia had proceeded to the point where he didn't really know why he was in the hospital. The surgeon called us (we had medical POA) and said he wasn't comfortable performing surgery due to his mental state. It also would not have prolonged his life substantially and the post-op would have been very stressful on him. Just FYI.
Make sure you take notes, keep copies of all paperwork in a folder, etc. Also make sure the house is secure and if she does go on hospice, don't tell people, because people on hospice are targets for drug thieves. We were advised to not even talk about it anywhere in public, such as at a restaurant, for this reason.
Good luck, it's rough, I hope you and your relative get the help you need.
posted by Marie Mon Dieu at 12:22 PM on May 17, 2015 [4 favorites]
Best answer: The Department of Health & Human Services offers an online Eldercare locator that is searchable by location for a wide variety of resources, and a telephone referral service at 1-800-677-1116.
posted by Little Dawn at 12:27 PM on May 17, 2015 [2 favorites]
posted by Little Dawn at 12:27 PM on May 17, 2015 [2 favorites]
If her physical condition is as bad as you indicate, I have to wonder why the surgery is taking place. If she has dementia, OCD, and anger issues, she's not exactly a good candidate: she won't comply with the doctor's instructions, and may well not recover in the inpatient facility or at home.
I second the recommendations above that you line up the paperwork like conservatorship and various powers of attorney. However if she's as difficult as you indicate, she may not agree to give you this kind of power, in which case your options are limited.
What are her financial resources like? Is it possible for her to pay for some of the support she needs, without you providing it directly?
I am also concerned that she would be sedated in the new facility, which won't help her incipient dementia.
All that said, you have my support and empathy: it's such a difficult position, when someone has such anger issues and yet needs help. Good luck.
posted by suelac at 12:32 PM on May 17, 2015 [4 favorites]
I second the recommendations above that you line up the paperwork like conservatorship and various powers of attorney. However if she's as difficult as you indicate, she may not agree to give you this kind of power, in which case your options are limited.
What are her financial resources like? Is it possible for her to pay for some of the support she needs, without you providing it directly?
I am also concerned that she would be sedated in the new facility, which won't help her incipient dementia.
All that said, you have my support and empathy: it's such a difficult position, when someone has such anger issues and yet needs help. Good luck.
posted by suelac at 12:32 PM on May 17, 2015 [4 favorites]
She's almost 90. She was given a choice of hospice or surgery. She chose neither. Neither is not a choice. She will have the surgery, after which, if she survives, it is likely she could live another year or two, but she will probably never walk again; she will probably be bedridden.
Seriously, seriously reconsider the choice to have the surgery. She does not want this. Why prolong her suffering, prolong her life with a terrible quality of life? Living bed bound is no way to live for someone like her (or anyone in my opinion, but if she was mentally with it she could make that choice). She'll be living just a few extra months, probably suffering infection after infection, risking bedsores, blood clots, and guaranteed daily indignities?
There is no answer to how to deal with that smoothly. It's not going to go well. Please, I beg you to get a palliative care consultation.
posted by treehorn+bunny at 12:54 PM on May 17, 2015 [35 favorites]
Seriously, seriously reconsider the choice to have the surgery. She does not want this. Why prolong her suffering, prolong her life with a terrible quality of life? Living bed bound is no way to live for someone like her (or anyone in my opinion, but if she was mentally with it she could make that choice). She'll be living just a few extra months, probably suffering infection after infection, risking bedsores, blood clots, and guaranteed daily indignities?
There is no answer to how to deal with that smoothly. It's not going to go well. Please, I beg you to get a palliative care consultation.
posted by treehorn+bunny at 12:54 PM on May 17, 2015 [35 favorites]
First, I just want to say that I really feel for you -- this is so tough and ultimately I think ends up feeling like NO decision you make will feel right, just because the whole thing is so messed up and sad. :(
In any case, a few thoughts:
--Is hospice (either in her home, near her home, or near your home) still an option? I wasn't clear from your response whether the surgery was a decision she had suddenly made or not, but if not, it seems a lot kinder to go the hospice route. Being bedridden and surrounded by strangers for ones last year or two is a fate most of us would not want to have, and unless she's actively seeking this surgery, hospice may well give her better quality of life for whatever time she has left.
--I'm not clear why you're moving forward with a nursing home sight unseen? I assume you are choosing somewhere that is close to you (as opposed to close to her current home) so you can visit sometimes? If so, why in the world would you not at least visit and make sure you feel good about the place? There also could be hospice-oriented places near where you are -- my grandmother spent her last months at a Catholic hospice (although we are not Catholic) and although I was too young to know too much at the time, all the older relatives in my family have talked frequently about what a wonderful place it was and how amazing the nuns were who cared for her. Just something to consider.
posted by rainbowbrite at 2:16 PM on May 17, 2015 [2 favorites]
In any case, a few thoughts:
--Is hospice (either in her home, near her home, or near your home) still an option? I wasn't clear from your response whether the surgery was a decision she had suddenly made or not, but if not, it seems a lot kinder to go the hospice route. Being bedridden and surrounded by strangers for ones last year or two is a fate most of us would not want to have, and unless she's actively seeking this surgery, hospice may well give her better quality of life for whatever time she has left.
--I'm not clear why you're moving forward with a nursing home sight unseen? I assume you are choosing somewhere that is close to you (as opposed to close to her current home) so you can visit sometimes? If so, why in the world would you not at least visit and make sure you feel good about the place? There also could be hospice-oriented places near where you are -- my grandmother spent her last months at a Catholic hospice (although we are not Catholic) and although I was too young to know too much at the time, all the older relatives in my family have talked frequently about what a wonderful place it was and how amazing the nuns were who cared for her. Just something to consider.
posted by rainbowbrite at 2:16 PM on May 17, 2015 [2 favorites]
>She chose neither. Neither is not a choice. She will have the surgery, after which, if she survives, it is likely she could live another year or two, but she will probably never walk again; she will probably be bedridden.
Neither is certainly a choice. It's none of my damn business and I don't know the details of the situation, but she's ninety years old. I strenuously urge you not to try to extend your relative's time on Earth by bargaining away the only things that make it tolerable.
My mom lost most of her capacities to a stroke some years ago. She was in nursing care for five months after the stroke. To describe it as human storage and a fate worse than death sounds hyperbolic but is merely factual.
She is now living at home, which she has no business doing--but she'll continue to do so as long as it's remotely possible and I have anything to say about it. If she manages to die of something before she has to be permanently institutionalized, she will have been extremely fortunate. If I had a choice between living another six months in my house and on my feet, or another ten years in a nursing home, I know what I'd pick.
posted by Sing Or Swim at 3:04 PM on May 17, 2015 [11 favorites]
Neither is certainly a choice. It's none of my damn business and I don't know the details of the situation, but she's ninety years old. I strenuously urge you not to try to extend your relative's time on Earth by bargaining away the only things that make it tolerable.
My mom lost most of her capacities to a stroke some years ago. She was in nursing care for five months after the stroke. To describe it as human storage and a fate worse than death sounds hyperbolic but is merely factual.
She is now living at home, which she has no business doing--but she'll continue to do so as long as it's remotely possible and I have anything to say about it. If she manages to die of something before she has to be permanently institutionalized, she will have been extremely fortunate. If I had a choice between living another six months in my house and on my feet, or another ten years in a nursing home, I know what I'd pick.
posted by Sing Or Swim at 3:04 PM on May 17, 2015 [11 favorites]
I am going to take clarkstonian at her word and assume the facts, choices and alternatives posted are accurate and true. To answer the question--there may be nothing you can do except be very clear, decisive and drop any expectations you might have of of cooperation or of a non-conflictual (somewhat) cooperative transition . Sometimes at this point in life and physical/mental health there are no good or palatable answers. Her mental illness is long standing--it is not going to change and what needs to be done may well need to be done. Do it in good faith, with kindness, with honesty and little or no expectations. Wishing the best for you
posted by rmhsinc at 4:00 PM on May 17, 2015
posted by rmhsinc at 4:00 PM on May 17, 2015
I can't imagine how frustrated you are. In reading your follow-up, it did seem to me that there's an undercurrent of anger too. Totally possible I'm misreading things, but I wonder if it could be worth stepping back a little and trying to seperate out your feelings and needs from her feelings and needs. Like taking a time-out when a toddler is really trying to get your goat. It may be that there is no good option. She's dying and unhappy, and has had mental illnesses that are now compounded by physical and neurological ones. Since faith is important to her, maybe her local priest, or the priest of her new location, or even the hospital chaplain, could be sources of support and help facilitate these conversations with her.
posted by Yellow Silver Maple at 4:04 PM on May 17, 2015
posted by Yellow Silver Maple at 4:04 PM on May 17, 2015
Response by poster: "Neither is certainly a choice. It's none of my damn business and I don't know the details of the situation, but she's ninety years old. I strenuously urge you not to try to extend your relative's time on Earth by bargaining away the only things that make it tolerable."
We did not choose the surgery. The doctor told her she could choose hospice and die or have the surgery and have a possibility of life. They also told her, if she did not have the surgery, she should not come back because she is refusing their recommended treatment. It's inappropriate for a public forum to describe her illness. She is afraid to die. She doesn't want hospice. She agreed to the surgery. We have power of attorney in the state in which she currently resides, but not in the state to which she is moving. She has agreed to the move. We are not going to sell her house out from under her. She is going to sell it.
We ARE going to visit the nursing home this week. We will do due diligence. We have checked it out online. But we have chosen because she has chosen. She will go there because it is of her faith. She doesn't care about the way a place looks or the food they have. She doesn't care about the social aspect. She is not social. She can't eat. She won't be walking. She'll be in a bed. She put her own mother in a nursing home; she knows what's ahead of her. We will visit her. The goal is not to punish her. It's to help her as much as we can.
The only thing we have done is tell her we can't keep making a 700-mile round trip drive every week or two to take care of her. The rest of it is up to her. There is a very long road from her home to the nursing home. We are trying to facilitate the move and anticipate the legal, medical and emotional problems that are inevitably going to crop up. That is what I am asking about. That is the help I need.
posted by clarkstonian at 5:25 PM on May 17, 2015 [1 favorite]
We did not choose the surgery. The doctor told her she could choose hospice and die or have the surgery and have a possibility of life. They also told her, if she did not have the surgery, she should not come back because she is refusing their recommended treatment. It's inappropriate for a public forum to describe her illness. She is afraid to die. She doesn't want hospice. She agreed to the surgery. We have power of attorney in the state in which she currently resides, but not in the state to which she is moving. She has agreed to the move. We are not going to sell her house out from under her. She is going to sell it.
We ARE going to visit the nursing home this week. We will do due diligence. We have checked it out online. But we have chosen because she has chosen. She will go there because it is of her faith. She doesn't care about the way a place looks or the food they have. She doesn't care about the social aspect. She is not social. She can't eat. She won't be walking. She'll be in a bed. She put her own mother in a nursing home; she knows what's ahead of her. We will visit her. The goal is not to punish her. It's to help her as much as we can.
The only thing we have done is tell her we can't keep making a 700-mile round trip drive every week or two to take care of her. The rest of it is up to her. There is a very long road from her home to the nursing home. We are trying to facilitate the move and anticipate the legal, medical and emotional problems that are inevitably going to crop up. That is what I am asking about. That is the help I need.
posted by clarkstonian at 5:25 PM on May 17, 2015 [1 favorite]
I think what you're having to do is very difficult and that you're doing extremely well under the duress. I'm so sorry you have to go through this. I wish I had good answers for you, but the only thing I can say is that you are asking all the right questions and taking all the correct steps.
posted by The Noble Goofy Elk at 5:30 PM on May 17, 2015 [1 favorite]
posted by The Noble Goofy Elk at 5:30 PM on May 17, 2015 [1 favorite]
Okay, I realize that this is a very small thing, but when she gets to the home, I'd wait a few days and then ask her if she'd like music, with large headphones. Honestly, when my dad was in the short term care part of an elderly home, he just wanted to tune out during the day, and the music helped him sleep, from all of the loud noises (people shouting, etc.).
Best of luck to you. Personally, the greatest gift that I plan to give my daughter is to do my darndest to plan our care and choices now, and not put her in the incredibly awful, draining position that comes with being the sole person responsible/caregiver to someone who doesn't care about how awful their decline is for you, as you become responsible for navigating their legal, medical and emotional issues. It may still all go to pot, because at least in the US, choices for the elderly suck, but I'm going to try. .
posted by It's a Parasox at 5:37 PM on May 17, 2015
Best of luck to you. Personally, the greatest gift that I plan to give my daughter is to do my darndest to plan our care and choices now, and not put her in the incredibly awful, draining position that comes with being the sole person responsible/caregiver to someone who doesn't care about how awful their decline is for you, as you become responsible for navigating their legal, medical and emotional issues. It may still all go to pot, because at least in the US, choices for the elderly suck, but I'm going to try. .
posted by It's a Parasox at 5:37 PM on May 17, 2015
Best answer: I'm going through something similar right now. (I would have responded sooner if not.) My mother is still at home and we hope she can stay there as long as possible, but as in your case this might not be sustainable over a long period of time. One of the possibilities my siblings and I have discussed was having her non-essential possessions gathered together (maybe carefully packed or labelled or crated?) before she moved, if she turns out having to move, so she would know where they were in case she wanted to ask for something. My mom is very attached to the objects around her (I am too, so I don't think this is an odd thing) and we've needed to move a lot of them even while she has been at home in ill health. She hasn't asked about many of them, but has been comforted knowing (when she did ask) that they were locatable and retrievable and hadn't simply disappeared.
I'm really sorry for what you are going through.
posted by sophieblue at 6:26 PM on May 17, 2015
I'm really sorry for what you are going through.
posted by sophieblue at 6:26 PM on May 17, 2015
You're in the same place I was in about ten years ago with my mother. She lived over a thousand miles away from me, had isolated herself from her neighbors, holed up in her house where she'd lived for 40+ years, was in her 80s and her health was failing. And my mother was openly hostile, just as a matter of course. After she narrowly missed dying from a bowel obstruction and then nearly starved herself to death after the surgery, she wanted me to come live with her and take care of her, which I couldn't do for a number of important reasons - I stayed there for seven months, but that was all I could do. I offered to bring her here and get her set up in a nice apartment where my daughter and I could watch over her and see her every day; nope - she was staying in her house.
After many months of caring for her, discussions with her doctors, researching assisted-living facilities and/or in-home caregivers, none of which she'd have anything to do with, I had to make a very big decision - similar to the one you're dealing with. After much struggle, I decided to leave her in her home rather than force her into an incompetency judgement and a forcible nursing home placement. I did insist she have a caregiver, which she finally agreed to after her physician told her it was that or a nursing home. She fired the caregiver within a week, of course, but then eventually hired another one and another one and another one until she found someone who could deal with her - and then she slowly and begrudgingly went downhill until she died about four years later.
The decision is impossible because you're damned if you do and damned if you don't. I made my decision based on 1) what I'd want done with me in the same situation, and 2) my years of working in nursing homes, good ones and bad ones. My mother had a history of accidents - like falling off the roof where she went to "fix the cooler because it wasn't working right" - which it never did when a storm was coming in and it was muggy outside - and other falls and bloody messes. I knew when I decided to let her live in her house where she'd probably die with no one to help her - oh, Lord - how hard it all was - but it was the right thing to do and I knew it.
There is nothing I can tell you that will help because you're in the black hole and you have to decide for your own self and your own situation - and your own mother - what's best. You'll do it and it will be right.
Now that I'm old and dancing on the razor's edge of stuff like broken hips and dementia, I frequently think of something an old lady in a nursing home told me many years ago. She said the only reason people are in nursing homes is because no matter how hard they try they just can't seem to die and get it over with. I live around a lot of old people and there's always someone in trouble here - physical, mental, or with family - and I reflect on how true Mabel's words are; most of us just hope we can die before we put ourselves and our loved ones in the position you and your mom are in right now.
I wish you courage and peace in your heart and the same for your mother.
posted by aryma at 1:57 AM on May 18, 2015 [4 favorites]
After many months of caring for her, discussions with her doctors, researching assisted-living facilities and/or in-home caregivers, none of which she'd have anything to do with, I had to make a very big decision - similar to the one you're dealing with. After much struggle, I decided to leave her in her home rather than force her into an incompetency judgement and a forcible nursing home placement. I did insist she have a caregiver, which she finally agreed to after her physician told her it was that or a nursing home. She fired the caregiver within a week, of course, but then eventually hired another one and another one and another one until she found someone who could deal with her - and then she slowly and begrudgingly went downhill until she died about four years later.
The decision is impossible because you're damned if you do and damned if you don't. I made my decision based on 1) what I'd want done with me in the same situation, and 2) my years of working in nursing homes, good ones and bad ones. My mother had a history of accidents - like falling off the roof where she went to "fix the cooler because it wasn't working right" - which it never did when a storm was coming in and it was muggy outside - and other falls and bloody messes. I knew when I decided to let her live in her house where she'd probably die with no one to help her - oh, Lord - how hard it all was - but it was the right thing to do and I knew it.
There is nothing I can tell you that will help because you're in the black hole and you have to decide for your own self and your own situation - and your own mother - what's best. You'll do it and it will be right.
Now that I'm old and dancing on the razor's edge of stuff like broken hips and dementia, I frequently think of something an old lady in a nursing home told me many years ago. She said the only reason people are in nursing homes is because no matter how hard they try they just can't seem to die and get it over with. I live around a lot of old people and there's always someone in trouble here - physical, mental, or with family - and I reflect on how true Mabel's words are; most of us just hope we can die before we put ourselves and our loved ones in the position you and your mom are in right now.
I wish you courage and peace in your heart and the same for your mother.
posted by aryma at 1:57 AM on May 18, 2015 [4 favorites]
Take PHOTOS of everything in the house - especially the bedroom - before the move, so that everything can be placed exactly the same way in the new place, down to the pictures on the shelf and the slippers under the bed. My husband works with seniors and he tells me that all top-quality senior movers do this... it's not the most labor intensive thing to do but it makes a huge difference to the comfort of the senior.
I would also strongly encourage you to look into a Residential Care home instead of a Nursing Home. They tend to me smaller with just a few residents; they are almost always cheaper so you would be able to afford a no-roommate placement, and they tend to be run by nurses so they typically offer the highest levels of care with higher staffing ratios than a nursing home.
posted by rada at 6:23 AM on May 18, 2015 [5 favorites]
I would also strongly encourage you to look into a Residential Care home instead of a Nursing Home. They tend to me smaller with just a few residents; they are almost always cheaper so you would be able to afford a no-roommate placement, and they tend to be run by nurses so they typically offer the highest levels of care with higher staffing ratios than a nursing home.
posted by rada at 6:23 AM on May 18, 2015 [5 favorites]
Best answer: 1. Earplugs drown out the endless beeping in hospitals.
2. A soft fabric eye mask blocks out ever present fluorescent lighting so you can sleep.
3. Entertainment kept at hand, in the form of earbuds and a radio, or an iPod full of free audio books from librivox.org, or an e-reader full of free books from Project Gutenberg, will relieve boredom.
These three small things have eased my suffering when bedridden, far from home.
posted by pickles_have_souls at 9:03 AM on May 18, 2015
2. A soft fabric eye mask blocks out ever present fluorescent lighting so you can sleep.
3. Entertainment kept at hand, in the form of earbuds and a radio, or an iPod full of free audio books from librivox.org, or an e-reader full of free books from Project Gutenberg, will relieve boredom.
These three small things have eased my suffering when bedridden, far from home.
posted by pickles_have_souls at 9:03 AM on May 18, 2015
we are choosing a nursing home that is religiously aligned with her beliefs because that matters more to her than anything else. Religion is her sole refuge.
Perhaps speaking with someone who she considers to be a religious authority would help ease her mind, and make this an easier transition. Maybe you could arrange for a representative from her religion to travel with her, or at the very least see her off.
posted by sam_harms at 12:25 PM on May 18, 2015
Perhaps speaking with someone who she considers to be a religious authority would help ease her mind, and make this an easier transition. Maybe you could arrange for a representative from her religion to travel with her, or at the very least see her off.
posted by sam_harms at 12:25 PM on May 18, 2015
There is a very long road from her home to the nursing home.
It sounds like you are planning to drive her yourself? (Or maybe you meant that figuratively)
Look into medical transport options. Some of them fly people who would otherwise be too ill to fly, and not being regular commercial flights might be able to come much closer to you or her even if you aren't near a commercial airport with scheduled flights.
posted by yohko at 12:36 PM on May 18, 2015
It sounds like you are planning to drive her yourself? (Or maybe you meant that figuratively)
Look into medical transport options. Some of them fly people who would otherwise be too ill to fly, and not being regular commercial flights might be able to come much closer to you or her even if you aren't near a commercial airport with scheduled flights.
posted by yohko at 12:36 PM on May 18, 2015
The dementia is the game changer here. I absolutely support a choice of a nursing home, especially one which will allow hospice care. Absolutely make sure her health care proxy and power of attorney form are up to date. If her dementia progresses quickly, she may not be competent to make these choices soon. Think very carefully about surgery (and do that paperwork before!) because sedation and surgery often result in catastrophic changes in the elderly, especially those with dementia. This should be discussed in great detail with all of her health care providers, who may well change their minds about how to proceed.
Best of luck.
posted by Riverine at 9:08 AM on May 19, 2015 [1 favorite]
Best of luck.
posted by Riverine at 9:08 AM on May 19, 2015 [1 favorite]
The doctor told her she could choose hospice and die or have the surgery and have a possibility of life. They also told her, if she did not have the surgery, she should not come back because she is refusing their recommended treatment. It's inappropriate for a public forum to describe her illness. She is afraid to die. She doesn't want hospice. She agreed to the surgery.
With all due respect, if this is the only conversation that she's had with a doctor on the subject, and you're trying to do what she personally expresses that she wants, I still very strongly urge that she gets a second opinion from someone who specializes in palliative care and who won't put the decision to her in this way. Based only on the facts you have given, the surgeon gave her a false choice. No wonder she answered neither. It sounds like she was bullied into consenting to surgery ("what, you want to die? Then go home and die and don't waste my time!" is how that comes off)
Palliative care does not mean "giving up on life", and it does not mean necessarily dying sooner than a choice for aggressive care. Palliative care is not at odds with religious faith. I would second having a religious authority consult and advise her if this is her concern. I know you're in a very tough situation and I don't mean to make it tougher for you by questioning decisions you've clearly spent a lot of time and emotional energy in considering. Your family member is lucky to have someone who cares for her so much trying to help her. I am saying these things as someone who has seen a lot of suffering as a result of similar situations in the hopes that it might help ensure you don't miss an option that might help with avoiding suffering and regret, I hope what I said did not upset you as that was not my intent. Best of luck.
posted by treehorn+bunny at 1:04 PM on May 23, 2015 [2 favorites]
With all due respect, if this is the only conversation that she's had with a doctor on the subject, and you're trying to do what she personally expresses that she wants, I still very strongly urge that she gets a second opinion from someone who specializes in palliative care and who won't put the decision to her in this way. Based only on the facts you have given, the surgeon gave her a false choice. No wonder she answered neither. It sounds like she was bullied into consenting to surgery ("what, you want to die? Then go home and die and don't waste my time!" is how that comes off)
Palliative care does not mean "giving up on life", and it does not mean necessarily dying sooner than a choice for aggressive care. Palliative care is not at odds with religious faith. I would second having a religious authority consult and advise her if this is her concern. I know you're in a very tough situation and I don't mean to make it tougher for you by questioning decisions you've clearly spent a lot of time and emotional energy in considering. Your family member is lucky to have someone who cares for her so much trying to help her. I am saying these things as someone who has seen a lot of suffering as a result of similar situations in the hopes that it might help ensure you don't miss an option that might help with avoiding suffering and regret, I hope what I said did not upset you as that was not my intent. Best of luck.
posted by treehorn+bunny at 1:04 PM on May 23, 2015 [2 favorites]
This thread is closed to new comments.
That's what I'd be asking, and what I'd tell myself if I could go back 7 years to a somewhat similar situation with my Grandmother. Living alone was clearly not working for her; like your relative, her health was failing. She had had several little fender bender accidents - ran into the door of her garage once, into a few trash cans. She clearly needed to be off the road. Her fridge was filled with six months of progressively moldy food. Every two weeks when I'd drive across town (I only lived 3 hours away) she would let me throw away about a third of it and restock with good food, but some of it she insisted was still good. She ate food that was spoiled on a regular basis. We had a cleaner going in but her home was still quite messy. We all worried about when, not if, she would fall, or have a car accident, and no one would be there to help her.
So we moved her.
She didn't want to go, but we all convinced her, and she ultimately agreed. She moved from the house that she'd lived in for fifty years to an assisted living facility just down the street from two kids and a grandkid. I saw her three times a week rather than every two weeks. She got great care and ate good food every day.
And...she faded. It wasn't slow, it was fast. The brainy, feisty woman who had moved across the country to go to graduate school as a single woman in the 1950s and had accepted a job by herself in a remote fire lookout, who had traveled the world and worked with vulnerable, interesting populations was just absent. I could find her sometimes. I engaged her interest helping her study to get back her driver's license. She never got it back, but she wanted it back with a passion, and I saw her - saw my Grandma - when we were pouring over the DMV guide. I got her interested in a few projects. But she just slipped.
Looking back, I think as long as she was in her own little ecosystem she was able to hang on - by her fingers - but hang on to herself. But taken out of the community and the home in which she'd lived for decades, put in a new place in a small apartment without any of the autonomy that she had cherished all her life, she just wasn't able to stay with us.
She died two years ago. But I lost her long before that.
Going back, I'd have done it differently. I would have done whatever I could to support her staying in that house across town. What seemed like clearly the right choice then I see now as a misstep. Though it protected her life, it did not protect her quality of life.
I'm guessing you don't feel that you have this option with your relative - I certainly would have felt I didn't - but be prepared for her feeling of total alienation and significant loss when she moves.
Try to identify ways to still give her personal autonomy in her decision-making and privacy in what will be her home while protecting her from abuse. You said "nursing home" - is there a chance of giving her independent living with support? Many retirement communities have levels of care that range from an independent apartment with appointment and food support to full care. If you have the financial means, see if you can get her her own small apartment. Certainly make sure she doesn't have a roommate. And plan to spend a lot of time helping her create a support structure and a new life when she moves out. It is VERY difficult - several of us were very engaged in this when my Grandma moved and it still didn't work. But, it is worth the effort.
Good luck. And protect your family and your well-being through this, we found this to be a very draining period (emotionally and physically) demanding a lot of us.
posted by arnicae at 10:24 AM on May 17, 2015 [39 favorites]