Getting Mom On Board with In-Home Care
August 17, 2015 10:51 AM Subscribe
Recently my 62-year-old mom mom was hospitalized and committed due to—as best I can gather from a vague diagnosis—Wernicke-Korsakoff syndrome (aka "wet brain") as a result of alcoholism, malnutrition and thiamine deficiency (Here's my previous question on this subject). Now she's home, but unable to live on her own—though she can't admit it. Help me convince her she needs in-home care. Details below.
I gave a bunch of details in my previous post, but here's the long and short of it:
- 62 year old mom has a lifelong history of depression and probably more (my guess is Borderline, but this is all conjecture, as she refuses therapy), and has been a functioning alcoholic for 30+ years.
- She's been slowly losing her mental faculties over the last 5-10 years, and lost her longtime job last Sept. because she couldn't perform her duties anymore. After this, she sank into deeper depression, and stopped cleaning her house and paying her bills.
- Then, she had a mental breakdown in last January which resulted in an acute loss of short-term memory and cognitive function. Afterwards, she couldn't read anymore because her eyes can't follow columns, was putting on her clothes backwards and became incontinent, among many other problems. We're still not totally sure what happened to cause this; her doctor said it was "pseudodementia" but I'm skeptical.
- Last month, she was hospitalized and involuntarily committed because she set off her home alarm in the middle of the night and was talking gibberish when EMS arrived. After 5 days in the hospital, a CT Scan and an MRI, she was diagnosed with Metabolic Encephalopathy, and her doctor mentioned Wernicke-Korsakoff in passing. Through this whole experience, it's been nearly impossible to get a definitive diagnosis. They discharged her, saying Neurology couldn't do anything more to help her, and Psych said she wasn't a danger to herself or others. She was prescribed thiamine supplements and a multi-vitamin and released.
So, that's what happened up to now. Currently, she's back at home and relying on sporadic help from the one family member who'll have anything to do with her (she has a toxic personality and has driven virtually everyone in her life away).
This isn't enough.
I, her only child, am doing all of her bills from across the country, where I live. She still has ZERO short-term memory and has trouble with things like turning the TV on and off, keeping her pills organized and keeping the house maintained. She also can't drive, so she has to rely on said family member to take her to and from appointments. This is unsustainable.
When I talk to her about some possible scenarios, she freaks out and hangs up on me. These scenarios include an in-home care professional 1-2 days a week, moving her to live closer to me and my husband, and my husband and I moving closer to her so that I can help her every week or two. She isn't open to any of these scenarios, and I suspect if I hired someone to help her, she wouldn't let them in the house.
So my question is this: How does one convince, or even force, a parent into a new living situation against their will, AND at what point do they lose their decision-making abilities? Hubby and I are leaning toward relocating to her region (she's in North Carolina), but this will only be greeted by anger and frustration by my mom...so should we even do it?
Any personal experiences or advice would be fantastic, as I am kind of at a loss.
I gave a bunch of details in my previous post, but here's the long and short of it:
- 62 year old mom has a lifelong history of depression and probably more (my guess is Borderline, but this is all conjecture, as she refuses therapy), and has been a functioning alcoholic for 30+ years.
- She's been slowly losing her mental faculties over the last 5-10 years, and lost her longtime job last Sept. because she couldn't perform her duties anymore. After this, she sank into deeper depression, and stopped cleaning her house and paying her bills.
- Then, she had a mental breakdown in last January which resulted in an acute loss of short-term memory and cognitive function. Afterwards, she couldn't read anymore because her eyes can't follow columns, was putting on her clothes backwards and became incontinent, among many other problems. We're still not totally sure what happened to cause this; her doctor said it was "pseudodementia" but I'm skeptical.
- Last month, she was hospitalized and involuntarily committed because she set off her home alarm in the middle of the night and was talking gibberish when EMS arrived. After 5 days in the hospital, a CT Scan and an MRI, she was diagnosed with Metabolic Encephalopathy, and her doctor mentioned Wernicke-Korsakoff in passing. Through this whole experience, it's been nearly impossible to get a definitive diagnosis. They discharged her, saying Neurology couldn't do anything more to help her, and Psych said she wasn't a danger to herself or others. She was prescribed thiamine supplements and a multi-vitamin and released.
So, that's what happened up to now. Currently, she's back at home and relying on sporadic help from the one family member who'll have anything to do with her (she has a toxic personality and has driven virtually everyone in her life away).
This isn't enough.
I, her only child, am doing all of her bills from across the country, where I live. She still has ZERO short-term memory and has trouble with things like turning the TV on and off, keeping her pills organized and keeping the house maintained. She also can't drive, so she has to rely on said family member to take her to and from appointments. This is unsustainable.
When I talk to her about some possible scenarios, she freaks out and hangs up on me. These scenarios include an in-home care professional 1-2 days a week, moving her to live closer to me and my husband, and my husband and I moving closer to her so that I can help her every week or two. She isn't open to any of these scenarios, and I suspect if I hired someone to help her, she wouldn't let them in the house.
So my question is this: How does one convince, or even force, a parent into a new living situation against their will, AND at what point do they lose their decision-making abilities? Hubby and I are leaning toward relocating to her region (she's in North Carolina), but this will only be greeted by anger and frustration by my mom...so should we even do it?
Any personal experiences or advice would be fantastic, as I am kind of at a loss.
You may want to look into whether it's possible to get a conservatorship/guardianship over your mother. I'm not familiar with NC law specifically, but conservatorships are generally granted when the conservatee does not have the ability to care for themselves - it sounds like your mother may qualify. There are different types of conservatorships, but generally in this kind of situation you'd want to get the ability to determine where your mother lives and make health care decision for her. It sounds like she may need some kind of assisted living situation, or at the least a daily caretaker.
I'd start by talking to an elder law attorney who practices in her state. Here's one association that has national listings of elder law attorneys. There may also be a state and/or local bar association that runs a referral service. You can usually get a free or inexpensive first consultation.
posted by insectosaurus at 11:10 AM on August 17, 2015 [7 favorites]
I'd start by talking to an elder law attorney who practices in her state. Here's one association that has national listings of elder law attorneys. There may also be a state and/or local bar association that runs a referral service. You can usually get a free or inexpensive first consultation.
posted by insectosaurus at 11:10 AM on August 17, 2015 [7 favorites]
Have you talked to any home health aide organization/company directly?
When we were trying to handle this kind of situation with my grandma, the company (we use Home Instead) were a big help. Basically, my mom talked with the company director, and the company director helped talk my grandma into coming for an interview/meeting. People who work for these organizations are used to dealing with people with these sorts of needs, so they can be a great resource.
During the meeting, the director got a chance to assess my grandma's needs and convinced my grandma to at least meet a few aides. (FYI, the aides that my grandma was meeting were called "companions." The job title is different based on what kinds of duties the aide is supposed to take on, whether there's any nursing involved, etc. To me, it sounds like your mom would need a companion rather than a nurse, because she needs help with stuff like ADLs and transportation and stuff, which is a similar level to where my grandma was a few years ago -- but the director should be able to tell you more).
Eventually, my grandma found a "companion" who she basically fell in love with and came to see as a daughter. The companion herself was wonderful and a gigantic help. She's since moved away to be closer to her own family, but we're still in touch. There is no way my grandma could have survived so well for so long if she hadn't had her help.
The biggest issue is that this particular home health org doesn't take Medicare or Medicaid, so it's been very expensive (though still less expensive than putting my grandma in some sort of retirement home/facility). A lot of companies do take Medicare or Medicaid, though, so you can probably find one that does if you shop around. How *much* Medicare or Medicaid is willing to cover is a different story -- we're still figuring that out. (What *is* your mom's insurance situation?).
Also, it hasn't been possible to move my grandma out of her apartment (she refuses, and it would be such a big logistical undertaking that she's tbh, we don't really think she's well enough to do a full move out). So now, on the days that she doesn't have an aide coming in, she stays with family. That's something I think you'll probably want to avoid if possible, because it's pretty ad hoc and disruptive to have a needy, medically fragile person living in different places on different days of the week. But it's what happened to us because we didn't figure out a more solid plan earlier, when my grandma wasn't so ill and we (well, hypothetically) had more options.
posted by rue72 at 11:19 AM on August 17, 2015
When we were trying to handle this kind of situation with my grandma, the company (we use Home Instead) were a big help. Basically, my mom talked with the company director, and the company director helped talk my grandma into coming for an interview/meeting. People who work for these organizations are used to dealing with people with these sorts of needs, so they can be a great resource.
During the meeting, the director got a chance to assess my grandma's needs and convinced my grandma to at least meet a few aides. (FYI, the aides that my grandma was meeting were called "companions." The job title is different based on what kinds of duties the aide is supposed to take on, whether there's any nursing involved, etc. To me, it sounds like your mom would need a companion rather than a nurse, because she needs help with stuff like ADLs and transportation and stuff, which is a similar level to where my grandma was a few years ago -- but the director should be able to tell you more).
Eventually, my grandma found a "companion" who she basically fell in love with and came to see as a daughter. The companion herself was wonderful and a gigantic help. She's since moved away to be closer to her own family, but we're still in touch. There is no way my grandma could have survived so well for so long if she hadn't had her help.
The biggest issue is that this particular home health org doesn't take Medicare or Medicaid, so it's been very expensive (though still less expensive than putting my grandma in some sort of retirement home/facility). A lot of companies do take Medicare or Medicaid, though, so you can probably find one that does if you shop around. How *much* Medicare or Medicaid is willing to cover is a different story -- we're still figuring that out. (What *is* your mom's insurance situation?).
Also, it hasn't been possible to move my grandma out of her apartment (she refuses, and it would be such a big logistical undertaking that she's tbh, we don't really think she's well enough to do a full move out). So now, on the days that she doesn't have an aide coming in, she stays with family. That's something I think you'll probably want to avoid if possible, because it's pretty ad hoc and disruptive to have a needy, medically fragile person living in different places on different days of the week. But it's what happened to us because we didn't figure out a more solid plan earlier, when my grandma wasn't so ill and we (well, hypothetically) had more options.
posted by rue72 at 11:19 AM on August 17, 2015
The specific office that you want to talk to is called "adult protective services," as they deal with disabled adults who cannot or will not care for themselves.
From my limited experience: moving closer to her is unlikely to make things better for anyone, though it seems she's unlikely to pull a runner (which is what happened in our case.) It's much easier to deal with an angry and erratic person if they don't feel cornered.
You can still get a conservatorship and receive services from the state; she should also be working on an SSDI application, and you or a local provider (lawyer, etc.) should be designated as her payee.
posted by SMPA at 11:20 AM on August 17, 2015 [1 favorite]
From my limited experience: moving closer to her is unlikely to make things better for anyone, though it seems she's unlikely to pull a runner (which is what happened in our case.) It's much easier to deal with an angry and erratic person if they don't feel cornered.
You can still get a conservatorship and receive services from the state; she should also be working on an SSDI application, and you or a local provider (lawyer, etc.) should be designated as her payee.
posted by SMPA at 11:20 AM on August 17, 2015 [1 favorite]
How does one convince, or even force, a parent into a new living situation against their will
One doesn't. One respects whatever fucked-up choices this other adult is insisting on making. If she has chosen to drink and drug herself to death, she has that right.
at what point do they lose their decision-making abilities?
Generally when a mental health professional has declared them to be a danger to themselves and/or other people.
posted by flabdablet at 11:23 AM on August 17, 2015 [3 favorites]
One doesn't. One respects whatever fucked-up choices this other adult is insisting on making. If she has chosen to drink and drug herself to death, she has that right.
at what point do they lose their decision-making abilities?
Generally when a mental health professional has declared them to be a danger to themselves and/or other people.
posted by flabdablet at 11:23 AM on August 17, 2015 [3 favorites]
I would not move to help a toxic, hostile parent you already know isn't going to accept the help. That isn't going to end well, is it? Here is what the state of North Carolina has to say about getting someone declared incompetent and legal guardianship.
FWIW I would consider moving to managed a parent who was my legal ward. That situation is thankless but not pointless, at least.
posted by DarlingBri at 11:23 AM on August 17, 2015 [4 favorites]
FWIW I would consider moving to managed a parent who was my legal ward. That situation is thankless but not pointless, at least.
posted by DarlingBri at 11:23 AM on August 17, 2015 [4 favorites]
She has to have a three day inpatient stay that will lead to being committed as a medicaid patient in permanent, long term care. Social services was seriously remisss in failing to place her.
I don't know her financial state, but at 62 she can start social security. Her primary care physician can order home health, but demented patients refuse it, hate their bathers, caregivers etc. You will have to listen about how crappy they are, longer than the care they provide in any day. Home care outfits have valuable social lessons, instruction sheets for compassionately providing care for demented people.
The Allen Cognitive index is a test a Speech Pathologist or Social Worker administrates. It establishes the patient's relative ability to make decisions or live independently. It is helpful in establishing disability.
If she has dementia and early onset Alzheimer's disease, even if she brought it on with alcohol abuse, she needs inpatient placement so she is protected from further self abuse. You may want to help her, by being there, but it is too late for that except to buy her clothes, presents, and visit with her.
If she has the angry type of dementia and Alzheimer's, you and your marriage will be at risk.
posted by Oyéah at 11:25 AM on August 17, 2015 [1 favorite]
I don't know her financial state, but at 62 she can start social security. Her primary care physician can order home health, but demented patients refuse it, hate their bathers, caregivers etc. You will have to listen about how crappy they are, longer than the care they provide in any day. Home care outfits have valuable social lessons, instruction sheets for compassionately providing care for demented people.
The Allen Cognitive index is a test a Speech Pathologist or Social Worker administrates. It establishes the patient's relative ability to make decisions or live independently. It is helpful in establishing disability.
If she has dementia and early onset Alzheimer's disease, even if she brought it on with alcohol abuse, she needs inpatient placement so she is protected from further self abuse. You may want to help her, by being there, but it is too late for that except to buy her clothes, presents, and visit with her.
If she has the angry type of dementia and Alzheimer's, you and your marriage will be at risk.
posted by Oyéah at 11:25 AM on August 17, 2015 [1 favorite]
So sorry you're going through this! I live in a retirement community and several of my neighbors and their children have had to deal with this.
One of the more successful approaches is to convince mom to at least talk to a home health aid and/or a patient advocate - not sure if these are common in non-retirement focused towns, but they're basically retired nurses and the like who get access to all sorts of medical info and help make sure all the doctors are on the same page as far as meds, in addition to other duties. Let her know that you are willing to let her in on these decisions and that her continued independence is your goal, but that if she doesn't you will have to call social services. Follow up on that threat. (A wellness check or two from the police are usually enough to convince the most hesitant parents that their kid is serious).
From personal experience... good friends of the family lived down here (FL) and their daughters (a few years older than me) were in NYC. Dad had Alzheimers, still early, but not able to care for himself. Mom fell, hit her head, and was hospitalized. Dad was convinced Mom would be ok (she wasn't - she passed a month later) and was not at all willing to have help. Wouldn't even let me in the house and I'd spent the past year taking Dad to appointments and to a senior center to play. He was feeling extremely threatened. I was able to convince him that I was on his side by doing things to show him that we wanted him to have his independence, and he eventually agreed to let me spend the night (fears of nighttime wandering that you don't have). After two nights, he agreed to have a home health aid instead of burdening me. That lasted about a week before the daughters could get down here and get him settled into a memory care unit.
So, maybe that is an approach you could take. I know your relationship is toxic and you have to look out for you in this. I wouldn't suggest a full out move until you know more. Maybe visit her, under the guise that you need to see her and make sure she's ok (let her think you're overreacting, if it helps). While there, she can see that having you around is beneficial (meds, appts, etc) and that you aren't threatening her very existence & independence. Let her see you taking time for yourself and trusting her to be on her lonesome - when, instead, you can use that time to speak to local elder law firms, social workers, home health aids, etc. Near the end of your visit, have one of the home health aids stop by to talk to mom so that you can all get on board with what needs to be done.
Remember that in addition to all the other mental stuff your mom is going through is a very real threat to her independence. That is probably where a lot of her anger & fear is coming from right now - it's just exacerbated by her/your history, her mental illness & addiction. She's already lost her car, which is a huge loss to freedom. If you can convince her that your goal is to help her remain independent as long as possible, that will help. She'll start seeing you as a bit more of an ally than a threat.
Good luck!
posted by imbri at 11:56 AM on August 17, 2015
One of the more successful approaches is to convince mom to at least talk to a home health aid and/or a patient advocate - not sure if these are common in non-retirement focused towns, but they're basically retired nurses and the like who get access to all sorts of medical info and help make sure all the doctors are on the same page as far as meds, in addition to other duties. Let her know that you are willing to let her in on these decisions and that her continued independence is your goal, but that if she doesn't you will have to call social services. Follow up on that threat. (A wellness check or two from the police are usually enough to convince the most hesitant parents that their kid is serious).
From personal experience... good friends of the family lived down here (FL) and their daughters (a few years older than me) were in NYC. Dad had Alzheimers, still early, but not able to care for himself. Mom fell, hit her head, and was hospitalized. Dad was convinced Mom would be ok (she wasn't - she passed a month later) and was not at all willing to have help. Wouldn't even let me in the house and I'd spent the past year taking Dad to appointments and to a senior center to play. He was feeling extremely threatened. I was able to convince him that I was on his side by doing things to show him that we wanted him to have his independence, and he eventually agreed to let me spend the night (fears of nighttime wandering that you don't have). After two nights, he agreed to have a home health aid instead of burdening me. That lasted about a week before the daughters could get down here and get him settled into a memory care unit.
So, maybe that is an approach you could take. I know your relationship is toxic and you have to look out for you in this. I wouldn't suggest a full out move until you know more. Maybe visit her, under the guise that you need to see her and make sure she's ok (let her think you're overreacting, if it helps). While there, she can see that having you around is beneficial (meds, appts, etc) and that you aren't threatening her very existence & independence. Let her see you taking time for yourself and trusting her to be on her lonesome - when, instead, you can use that time to speak to local elder law firms, social workers, home health aids, etc. Near the end of your visit, have one of the home health aids stop by to talk to mom so that you can all get on board with what needs to be done.
Remember that in addition to all the other mental stuff your mom is going through is a very real threat to her independence. That is probably where a lot of her anger & fear is coming from right now - it's just exacerbated by her/your history, her mental illness & addiction. She's already lost her car, which is a huge loss to freedom. If you can convince her that your goal is to help her remain independent as long as possible, that will help. She'll start seeing you as a bit more of an ally than a threat.
Good luck!
posted by imbri at 11:56 AM on August 17, 2015
We can't presume to say that social services was remiss in failing to place a patient who didn't want to be placed. She was seen by psychiatry, therefore they presumably deemed that she had the capacity to make her own medical decisions. That doesn't mean she's going to make good decisions, but it's illegal to force a person to be held in rehab or other inpatient facility unless they are a clear and immediate danger to themselves or others (not just eating badly and poor hygiene), and in fact it could be grounds for charges of assault and battery if you did try to do so.
I would agree with trying to move forward with the conservatorship process. That is what most people do in these situations. There is no point in trying to argue with someone who isn't a rational actor, so don't waste time trying to find the right words or the right scenario to convince her. You just have to keep pushing to get the legal ability to make the decision yourself. It's a professional determination that psychiatrists make whether a person has medical decision making capacity or not. Here's an article that describes some of the nuts and bolts of the process if you're interested. Feel free to MeMail me if you have other questions.
posted by treehorn+bunny at 6:39 PM on August 17, 2015 [1 favorite]
I would agree with trying to move forward with the conservatorship process. That is what most people do in these situations. There is no point in trying to argue with someone who isn't a rational actor, so don't waste time trying to find the right words or the right scenario to convince her. You just have to keep pushing to get the legal ability to make the decision yourself. It's a professional determination that psychiatrists make whether a person has medical decision making capacity or not. Here's an article that describes some of the nuts and bolts of the process if you're interested. Feel free to MeMail me if you have other questions.
posted by treehorn+bunny at 6:39 PM on August 17, 2015 [1 favorite]
« Older Old student loans - any options for forgiveness or... | Can you help me identify an old Macintosh... Newer »
This thread is closed to new comments.
posted by Etrigan at 11:02 AM on August 17, 2015 [7 favorites]