Help us get mom into a long term care facility
January 30, 2012 2:52 PM Subscribe
What words can we say to convince my dad that he needs to place my mom in a long term care facility?
My mom is in her late 50s and has Alzheimer's and (separately) dementia (specifically primary progressive aphasia). She is cared for by my dad in their home with the assistance of her friends from their church while my dad works. In the last two months, she has been quite difficult- exhibiting behaviors that are unmanageable at home, and definitely unmanageable by her friends. Hitting, kicking, scratching, throwing, extreme paranoia, etc. She is now on two different anti-psychotics to control the behaviors. They have "kicked in" over the past week or so, making her much more docile. That said, just last week, she tried to strangle me with an article of clothing in front of my 2 year old son. This, for obvious reasons, was my absolute breaking point. A single day spent caring for her is absolutely exhausting, even on a good day- there is no question that my dad is near his breaking point as well.
At the height of the behavior issues, my dad initiated, at my sister's and my request, looking for a LTC facility or a skilled in-home caregiver. He agreed it was necessary. We found both a LTC facility and in-home caregiver that we all like and are comfortable with. The in-home care provider started last week. My dad also stated, on Friday last, that he was going to call the LTC facility today (Monday) to set up the intake procedures.
As of this morning, he released the in-home caregiver and has decided not to begin intake procedures at the LTC facility, because she is "doing better." This is unspeakably frustrating. Of course, my dad gets to decide what he wants to do- he is her husband- but at the same time, my sister and I are watching his health decline, work life suffer and become more stressful, and their relationship suffer and devolve (he tells us that she thinks he is "the devil", and the bulk of her negative behaviors are directed at him). He refuses to go to any support groups or private therapy.
The LTC facility was clear that the positive parts of their lifestyle don't need to change- he can still take her to dinner, movies, walking, etc- exactly like he does now except that he doesn't have to do any of the horrible, stressful, dangerous parts. He can go to work without worrying about her. It is also clear that any move/transition needs to be made during a "good" period so that it is somewhat less stressful and negative for everyone. The three of us (dad, sister, myself) discussed this at length, in person, on Friday. Money is not the issue.
My sister and I live two hours away and I am expecting a baby in a couple months, so there is not a whole lot we can do to provide respite care, though I am there at least once per week (I will not be able to keep it up much longer). There is no other nearby family. My sister and I are both at our wits end and not sure what else to do- I guess I am hoping that someone has some magical words that we can say to convince my dad that a couple of church ladies watching mom a few hours a week isn't cutting it.
I should say that I get where he is coming from- they have been married for 40 years and he doesn't want to be away from her. He feels like its giving up (though we have told him definitively that it is absolutely not). I get this, and it tears my heart out- but it is necessary and it will make things better.
Any advice? BTDT?
My mom is in her late 50s and has Alzheimer's and (separately) dementia (specifically primary progressive aphasia). She is cared for by my dad in their home with the assistance of her friends from their church while my dad works. In the last two months, she has been quite difficult- exhibiting behaviors that are unmanageable at home, and definitely unmanageable by her friends. Hitting, kicking, scratching, throwing, extreme paranoia, etc. She is now on two different anti-psychotics to control the behaviors. They have "kicked in" over the past week or so, making her much more docile. That said, just last week, she tried to strangle me with an article of clothing in front of my 2 year old son. This, for obvious reasons, was my absolute breaking point. A single day spent caring for her is absolutely exhausting, even on a good day- there is no question that my dad is near his breaking point as well.
At the height of the behavior issues, my dad initiated, at my sister's and my request, looking for a LTC facility or a skilled in-home caregiver. He agreed it was necessary. We found both a LTC facility and in-home caregiver that we all like and are comfortable with. The in-home care provider started last week. My dad also stated, on Friday last, that he was going to call the LTC facility today (Monday) to set up the intake procedures.
As of this morning, he released the in-home caregiver and has decided not to begin intake procedures at the LTC facility, because she is "doing better." This is unspeakably frustrating. Of course, my dad gets to decide what he wants to do- he is her husband- but at the same time, my sister and I are watching his health decline, work life suffer and become more stressful, and their relationship suffer and devolve (he tells us that she thinks he is "the devil", and the bulk of her negative behaviors are directed at him). He refuses to go to any support groups or private therapy.
The LTC facility was clear that the positive parts of their lifestyle don't need to change- he can still take her to dinner, movies, walking, etc- exactly like he does now except that he doesn't have to do any of the horrible, stressful, dangerous parts. He can go to work without worrying about her. It is also clear that any move/transition needs to be made during a "good" period so that it is somewhat less stressful and negative for everyone. The three of us (dad, sister, myself) discussed this at length, in person, on Friday. Money is not the issue.
My sister and I live two hours away and I am expecting a baby in a couple months, so there is not a whole lot we can do to provide respite care, though I am there at least once per week (I will not be able to keep it up much longer). There is no other nearby family. My sister and I are both at our wits end and not sure what else to do- I guess I am hoping that someone has some magical words that we can say to convince my dad that a couple of church ladies watching mom a few hours a week isn't cutting it.
I should say that I get where he is coming from- they have been married for 40 years and he doesn't want to be away from her. He feels like its giving up (though we have told him definitively that it is absolutely not). I get this, and it tears my heart out- but it is necessary and it will make things better.
Any advice? BTDT?
Hi!
I am sorry that your family is going through with this difficult situation.
My advice is to engage a non-partisan and objective social worker, who has a lot of experience with geriatric care. This person will focus solely on the best interest of your mother. Let this person come in, analyse the situation, and provide advice to the family on how to arrive at the best care for your mother.
Sincerely
posted by jchaw at 3:11 PM on January 30, 2012 [2 favorites]
I am sorry that your family is going through with this difficult situation.
My advice is to engage a non-partisan and objective social worker, who has a lot of experience with geriatric care. This person will focus solely on the best interest of your mother. Let this person come in, analyse the situation, and provide advice to the family on how to arrive at the best care for your mother.
Sincerely
posted by jchaw at 3:11 PM on January 30, 2012 [2 favorites]
Seconding jchaw's suggestion. Some useful search terms are "geriatric care manager" and "geriatric care social worker" (I know your mom is younger, but the best way to find folks with expertise in the dementia field is working with people who specialize in gerontology).
I really feel for you. What a tough situation.
posted by Sidhedevil at 3:21 PM on January 30, 2012
I really feel for you. What a tough situation.
posted by Sidhedevil at 3:21 PM on January 30, 2012
I am so, so sorry.
Okay. The words I think you need to say are very harsh, I warn you, but they are true. They are, "Dad, you're in over your head and someone - Mom, you, one of the church people - is going to get hurt. When that happens, Adult Protective Services will become involved and none of us will have much say about where Mom goes."
posted by gingerest at 3:31 PM on January 30, 2012 [7 favorites]
Okay. The words I think you need to say are very harsh, I warn you, but they are true. They are, "Dad, you're in over your head and someone - Mom, you, one of the church people - is going to get hurt. When that happens, Adult Protective Services will become involved and none of us will have much say about where Mom goes."
posted by gingerest at 3:31 PM on January 30, 2012 [7 favorites]
Yeah, finding someone your father trusts, such as a family doctor, lawyer or financial advisor, or accountant may help change his mind. Speaking from experience, in families old dynamics can be hard to break out of.
posted by KokuRyu at 3:40 PM on January 30, 2012 [1 favorite]
posted by KokuRyu at 3:40 PM on January 30, 2012 [1 favorite]
Please, for your own safety as a pregnant mom stay away!
Have you spoken with their minister? Contact her/him explain all this. You need allies whose opinions your father respects. Surely some of the church members who have been helping out see how difficult the situation is; can you persuade any of them to try to talk some sense to your father? Does either of your parents have siblings in the area? If so, they might be helpful. Longtime family friends?
posted by mareli at 3:41 PM on January 30, 2012 [1 favorite]
Have you spoken with their minister? Contact her/him explain all this. You need allies whose opinions your father respects. Surely some of the church members who have been helping out see how difficult the situation is; can you persuade any of them to try to talk some sense to your father? Does either of your parents have siblings in the area? If so, they might be helpful. Longtime family friends?
posted by mareli at 3:41 PM on January 30, 2012 [1 favorite]
Seconding gingerest and adding: say it once and let it go. It's in your dad's hands from there on in, unless or until that choice is taken away from him, and things will unfold as they will. I wish there was an easier answer but there isn't. Keep yourself and your kids safe in the meantime; if that means not visiting their home, so be it. I hope that things go as smoothly as possible for you and your family.
posted by Currer Belfry at 3:41 PM on January 30, 2012
posted by Currer Belfry at 3:41 PM on January 30, 2012
Oh, Anonymous, I'm so sorry.
If it helps, last year when I was resisting my sister's advice to go back to the hospital emergency room, even though it was fairly obvious I needed medical help, she finally said something that convinced me I needed to go. She simply said, "I couldn't bear it if something terrible happened to you at home and I wasn't equipped or experienced enough to help save your life."
I saw the look of grief and concern in her eyes, and that was finally what I needed to hear and see to know that I needed to let go of my pride and guilt.
Perhaps a version of this statement would be helpful for your dad to hear.
posted by HeyAllie at 3:42 PM on January 30, 2012 [2 favorites]
If it helps, last year when I was resisting my sister's advice to go back to the hospital emergency room, even though it was fairly obvious I needed medical help, she finally said something that convinced me I needed to go. She simply said, "I couldn't bear it if something terrible happened to you at home and I wasn't equipped or experienced enough to help save your life."
I saw the look of grief and concern in her eyes, and that was finally what I needed to hear and see to know that I needed to let go of my pride and guilt.
Perhaps a version of this statement would be helpful for your dad to hear.
posted by HeyAllie at 3:42 PM on January 30, 2012 [2 favorites]
You have my sympathy.
For my family, the sad fact that people had to come to accept was that my grandmother's (Alzheimer's and dementia) potential to hurt us and herself was increasing exponentially -- and it was irresponsible and selfish to keep her at home, where everyone including her was unhappy, when she could be somewhere that she could thrive and we could all heal. It was (and still is) quite difficult to remember that even when she has a "good" day it's still not a GOOD day, you know?
My mother was her primary caregiver and at some point I told her that I believe that my grandmother's incredibly stressful life had contributed to her developing these illnesses and that I would never forgive my mother or myself if I let that pattern continue. It sounded a little petty at the time (still does I guess) but I think it helped lever my mother towards putting my grandmother into a home.
It's not "giving up," it's doing the best thing for everyone, including the afflicted person. But it can be so incredibly hard to get someone to see that. Again, you have so much of my sympathy.
posted by sm1tten at 5:35 PM on January 30, 2012
For my family, the sad fact that people had to come to accept was that my grandmother's (Alzheimer's and dementia) potential to hurt us and herself was increasing exponentially -- and it was irresponsible and selfish to keep her at home, where everyone including her was unhappy, when she could be somewhere that she could thrive and we could all heal. It was (and still is) quite difficult to remember that even when she has a "good" day it's still not a GOOD day, you know?
My mother was her primary caregiver and at some point I told her that I believe that my grandmother's incredibly stressful life had contributed to her developing these illnesses and that I would never forgive my mother or myself if I let that pattern continue. It sounded a little petty at the time (still does I guess) but I think it helped lever my mother towards putting my grandmother into a home.
It's not "giving up," it's doing the best thing for everyone, including the afflicted person. But it can be so incredibly hard to get someone to see that. Again, you have so much of my sympathy.
posted by sm1tten at 5:35 PM on January 30, 2012
The advantage of working with a professional is that they have dealt with situations like this before, and they don't have the history with your dad or your mom that you and your sister do. Or that the minister does.
An objective third party can be direct in ways that someone engaged emotionally simply can't. Since you say money isn't a major issue, it might be worth the investment.
posted by Sidhedevil at 6:38 PM on January 30, 2012
An objective third party can be direct in ways that someone engaged emotionally simply can't. Since you say money isn't a major issue, it might be worth the investment.
posted by Sidhedevil at 6:38 PM on January 30, 2012
Since he almost did it and then backed out, it just seems like he is not ready. This is probably heartbreaking for him. I bet most of him knows he has to do this but part of him is retaining hope. I think really pushing it might make him push back (in his mind defending her, in a bit of an irrational way). I would think about supporting him and guiding him in a way that is gentle, loving, and practical. Really bring up the good things. Get him to start thinking of plans with her so he doesn't feel like he is abandoning her. Dinner dates, great places to walk, etc. Guide him towards seeing the good things he can get with his relationship going forward, do not focus on 'the end' of things.
(also, if they are in their 50's their intimate life is still there. That should not be lost if it can be helped, it's important. So do bring up possibilities of overnight visits, private time, etc.)
posted by Vaike at 7:01 PM on January 30, 2012 [2 favorites]
(also, if they are in their 50's their intimate life is still there. That should not be lost if it can be helped, it's important. So do bring up possibilities of overnight visits, private time, etc.)
posted by Vaike at 7:01 PM on January 30, 2012 [2 favorites]
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It might be very helpful to find a local support group for families of people with dementia and related illnesses and attend a meeting with your father (and with your sister as well if she is able). My sister and BIL just went through this with her FIL, and a friend recently went through this with her mother, and in both cases the support group was invaluable. It *really* helps to hear a room full of people facing similar issues discuss how their loved ones are declining, how they are handling things day to day, how they themselves are holding up to the strain, etc. It lifts the veil and allows you to see the situation clearly for what it is, while also allowing you to commiserate honestly with other people who DO understand the impossibilities of your situation. It can also tell you where you are in the progressions of the different illnesses, and what you can expect in the coming weeks and months.
Good luck.
posted by mosk at 3:10 PM on January 30, 2012