Caring for myself when caring for people who won't care for themselves?
June 9, 2022 9:01 AM Subscribe
I'm providing supplementary care for aging family members who are difficult to deal with, and it's draining. Assuming therapy is on deck, what other resources can you recommend to cope?
I deleted several walls of text because I'm not sure the gritty details matter. Here's the (still not short enough) summary:
For the last 6 months I've been spending every other week providing supplementary care for two elderly/disabled family members. They live together and are sort of each other's care providers in an Odd Couple sort of way. But they're both self destructive and are too proud/self-denying to accept direct help. I spend tons of energy trying to judo their passive-aggressiveness and encouraging them to do basic self care (take meds, elevate swollen feet, etc) in ways that they don't resent. I have to be hypervigilant because they're both so stoic they'll hide treatable conditions until they develop into a full-blown emergency. At the same time I also try to head off the self-destructive, impulsive things before anyone really hurts themselves. (One example: They tried to go swimming the same day they had eye surgery. They knew they shouldn't do it but I still had to talk them out of it.) They claim they're grateful for what I do, but fight me tooth and nail for everything I try to do—even things they say they want done! It's exhausting. They say they want me there and value what I do, but their resistance feels like a complete lack of gratitude. I do my best to treat them with kindness and respect, but that also means I watch them needlessly (to me) suffer, and that's taking a toll.
It's (past) time to get at least one of them to an elevated level of care, but they refuse to consider it. It's going to take some serious health emergency, like a fall, to get them to change living arrangements. And when that happens I'll feel like it was my job to prevent it.
Plus they're family, my surviving parent and oldest sibling (I'm the youngest), so that's an additional layer of complicated baggage.
tl;dr: Again assuming therapy is already on the table, what are resources, books, blogs, frames of reference, etc that can help me find my boundaries when I'm unable to help the people I love.
Piggyback Ask: I see a lot of myself in the way they're crappy care recipients, and I'd like to not do that when I need care. Any resources for being a good patient?
I deleted several walls of text because I'm not sure the gritty details matter. Here's the (still not short enough) summary:
For the last 6 months I've been spending every other week providing supplementary care for two elderly/disabled family members. They live together and are sort of each other's care providers in an Odd Couple sort of way. But they're both self destructive and are too proud/self-denying to accept direct help. I spend tons of energy trying to judo their passive-aggressiveness and encouraging them to do basic self care (take meds, elevate swollen feet, etc) in ways that they don't resent. I have to be hypervigilant because they're both so stoic they'll hide treatable conditions until they develop into a full-blown emergency. At the same time I also try to head off the self-destructive, impulsive things before anyone really hurts themselves. (One example: They tried to go swimming the same day they had eye surgery. They knew they shouldn't do it but I still had to talk them out of it.) They claim they're grateful for what I do, but fight me tooth and nail for everything I try to do—even things they say they want done! It's exhausting. They say they want me there and value what I do, but their resistance feels like a complete lack of gratitude. I do my best to treat them with kindness and respect, but that also means I watch them needlessly (to me) suffer, and that's taking a toll.
It's (past) time to get at least one of them to an elevated level of care, but they refuse to consider it. It's going to take some serious health emergency, like a fall, to get them to change living arrangements. And when that happens I'll feel like it was my job to prevent it.
Plus they're family, my surviving parent and oldest sibling (I'm the youngest), so that's an additional layer of complicated baggage.
tl;dr: Again assuming therapy is already on the table, what are resources, books, blogs, frames of reference, etc that can help me find my boundaries when I'm unable to help the people I love.
Piggyback Ask: I see a lot of myself in the way they're crappy care recipients, and I'd like to not do that when I need care. Any resources for being a good patient?
Do you have recourse to hiring some assistance for some of this work? It's possible that being accountable to someone else - who is not a relative - may affect some of these behaviors.
Regarding this:
I do my best to treat them with kindness and respect, but that also means I watch them needlessly (to me) suffer, and that's taking a toll.
If mental illness on their part is not a factor, and this is just a case of being plain old ornery/stubborn, then consider that we can't want something for others more than they want it for themselves. Their agency has to come into this at some point. If you've warned them off a particular action or habit, and they've freely chosen it anyway, you've done what could be reasonably expected. Carrying the responsibility for their action and the aftermath falls on the wrong side of 'reasonable expectation.' That burden is not yours to carry. As to resources - there are a whole lot of caregiver support groups out there - faith-based and otherwise. Get in touch with one as soon as you can; you're in no way alone in this sort of thing.
posted by jquinby at 9:17 AM on June 9, 2022 [7 favorites]
Regarding this:
I do my best to treat them with kindness and respect, but that also means I watch them needlessly (to me) suffer, and that's taking a toll.
If mental illness on their part is not a factor, and this is just a case of being plain old ornery/stubborn, then consider that we can't want something for others more than they want it for themselves. Their agency has to come into this at some point. If you've warned them off a particular action or habit, and they've freely chosen it anyway, you've done what could be reasonably expected. Carrying the responsibility for their action and the aftermath falls on the wrong side of 'reasonable expectation.' That burden is not yours to carry. As to resources - there are a whole lot of caregiver support groups out there - faith-based and otherwise. Get in touch with one as soon as you can; you're in no way alone in this sort of thing.
posted by jquinby at 9:17 AM on June 9, 2022 [7 favorites]
I am sorry you have to go through this. Caring for my mom with dementia and other health issues was challenging and she was not even actively fighting me. In addition to getting therapy for yourself, have you looked into elder care consultants or seeing what elder services are available in their town. I met with a local consultant, and she was so helpful as she had a depth of experience and a big toolbox. If you find someone to do and in-home assessment, don't ask if you can bring them, just do it and deal with the consequences after.
But the big thing to remember is that this is behavior they've learned over a lifetime--if they are not willing to change, it will be almost impossible for you to change them. They are adults and, ultimately, you are not responsible for the consequences of their choices.
posted by agatha_magatha at 9:18 AM on June 9, 2022 [1 favorite]
But the big thing to remember is that this is behavior they've learned over a lifetime--if they are not willing to change, it will be almost impossible for you to change them. They are adults and, ultimately, you are not responsible for the consequences of their choices.
posted by agatha_magatha at 9:18 AM on June 9, 2022 [1 favorite]
And with respect to being a good patient, I think its a lot about the (REALLY HARD) work of being skeptical of your own abilities - physical, mental, financial management, etc. Its really hard, but there is no one who as capable/flexible mentally at 80 as they were at 60. I think we get hung up on this because we take a really black-and-white view of competence, value, intelligence, etc. Like at 80 or 90, you can still be really intelligent, perceptive, wise, and oriented, but not as quick in new situations, or when you're tired or stressed, or whatever. It's not just 100% independent adult or ready for the hospital bed - there's a spectrum in old age, just like there is in childhood, but we're not well equipped to recognize and address it.
posted by mercredi at 9:20 AM on June 9, 2022 [10 favorites]
posted by mercredi at 9:20 AM on June 9, 2022 [10 favorites]
I have my mom here visiting and am grappling with my own understanding of her diminished capacity. What I am concluding is that there are a lot of parallels between the aging brain and the aging reproductive system. It's not a linear decline; instead it's just chaos as various functions intermittently slow down, rev up, go haywire, look normal, stall out, etc.
It's really hard to calibrate my own expectations of my mom because it's impossible for either one of us to understand her abilities. Her emotions are all over the place (and why wouldn't they be? Imagine how all of this must feel) which makes everything harder for all of us. She is in the middle of the storm and can't see what's happening to her. She's spent an entire lifetime thinking that when she knows something to be true, it actually is, so she continues to be confident in her totally wrong assertions now. When it becomes apparent that she's confused, it's really upsetting to her. I explain things and impress on her what she needs to do, she agrees and understands, then later does the exact opposite, but meanwhile she's able to retain other information perfectly well. Is she just placating me and doing what she wants anyway? Or is her mind on the fritz? It's all just so hard. Right now I'm trying to come to terms with the chaos and accept that we're both going to have to feel our way through every situation.
posted by HotToddy at 10:27 AM on June 9, 2022 [6 favorites]
It's really hard to calibrate my own expectations of my mom because it's impossible for either one of us to understand her abilities. Her emotions are all over the place (and why wouldn't they be? Imagine how all of this must feel) which makes everything harder for all of us. She is in the middle of the storm and can't see what's happening to her. She's spent an entire lifetime thinking that when she knows something to be true, it actually is, so she continues to be confident in her totally wrong assertions now. When it becomes apparent that she's confused, it's really upsetting to her. I explain things and impress on her what she needs to do, she agrees and understands, then later does the exact opposite, but meanwhile she's able to retain other information perfectly well. Is she just placating me and doing what she wants anyway? Or is her mind on the fritz? It's all just so hard. Right now I'm trying to come to terms with the chaos and accept that we're both going to have to feel our way through every situation.
posted by HotToddy at 10:27 AM on June 9, 2022 [6 favorites]
It's (past) time to get at least one of them to an elevated level of care, but they refuse to consider it. It's going to take some serious health emergency, like a fall, to get them to change living arrangements. And when that happens I'll feel like it was my job to prevent it.
I am so sorry that you are dealing with this. I'm in the thick of it myself, but I am on the other side of the medical emergency of which you're afraid.
So allow me to offer, as someone in the trenches: that medical emergency is not something you can prevent, it's not your fault if it happens, and it might literally be the best thing for them when it does happen.
My parent finally, after YEARS of myself and my siblings contorting ourselves to try and prevent it, hit rock bottom with her health last month and had to be hospitalized via the ER. It was awful for us, and certainly worse for her, but a week in the hospital did more for her than fully three years of our at-home efforts. The doctors could be blunt with her in a way we could not, both about her condition and the consequences of not caring for herself.
I cannot express the relief my siblings and I felt once she was hospitalized. We expected to feel guilty and awful, just as you expect to. And instead we just knew, for the first time in ages, that she was entirely safe and cared for.
You're not their doctor, you're not a god, and you're not their parent, even if it sometimes feels like it. Their suffering, to the extent it's preventable, is a choice they're making, and if it is hard for you to watch, then it is YOUR adult responsibility to start drawing healthy boundaries for yourself, including how much time you spend with them. "I won't stay here if you're just going to yell at me when I try to help you" is a completely valid position.
It's hard to do! I don't mean to make light of it. And it means you have to manage the anxiety this creates in you, which isn't nothing, but that's why therapy is on the table, right?
posted by We put our faith in Blast Hardcheese at 10:31 AM on June 9, 2022 [13 favorites]
I am so sorry that you are dealing with this. I'm in the thick of it myself, but I am on the other side of the medical emergency of which you're afraid.
So allow me to offer, as someone in the trenches: that medical emergency is not something you can prevent, it's not your fault if it happens, and it might literally be the best thing for them when it does happen.
My parent finally, after YEARS of myself and my siblings contorting ourselves to try and prevent it, hit rock bottom with her health last month and had to be hospitalized via the ER. It was awful for us, and certainly worse for her, but a week in the hospital did more for her than fully three years of our at-home efforts. The doctors could be blunt with her in a way we could not, both about her condition and the consequences of not caring for herself.
I cannot express the relief my siblings and I felt once she was hospitalized. We expected to feel guilty and awful, just as you expect to. And instead we just knew, for the first time in ages, that she was entirely safe and cared for.
You're not their doctor, you're not a god, and you're not their parent, even if it sometimes feels like it. Their suffering, to the extent it's preventable, is a choice they're making, and if it is hard for you to watch, then it is YOUR adult responsibility to start drawing healthy boundaries for yourself, including how much time you spend with them. "I won't stay here if you're just going to yell at me when I try to help you" is a completely valid position.
It's hard to do! I don't mean to make light of it. And it means you have to manage the anxiety this creates in you, which isn't nothing, but that's why therapy is on the table, right?
posted by We put our faith in Blast Hardcheese at 10:31 AM on June 9, 2022 [13 favorites]
My SIL and I finally went to talk to someone at the Alzheimers Association. It was a huge relief to be told it was okay, to not drive ourselves crazy, and to accept the limits of what we could do. My mother was difficult, negative, and somewhat depressed. I was, sadly, far less patient than you.
You are doing everything you can. Maybe it's time to step away and look after yourself.
Find your local social service provider and have them assess your elders to see what assistance they need, and what can be provided.
They also might be able to refer you to support groups and therapy.
posted by Enid Lareg at 7:35 PM on June 9, 2022
You are doing everything you can. Maybe it's time to step away and look after yourself.
Find your local social service provider and have them assess your elders to see what assistance they need, and what can be provided.
They also might be able to refer you to support groups and therapy.
posted by Enid Lareg at 7:35 PM on June 9, 2022
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So in the same way that it's really frustrating when a three year old won't do things that they obviously need to do and will make them happier/feel better, but you have to remember that they're doing that bc they're three and that's just what they can do.
For most people you don't have the same mental abilities as you age as you did when you were in middle age. Even when people seem oriented, their capacity to rationally, consistently engage in self care is less than it was. So to the extent that you can see them as doing what they are able to do, that helped me.
Also, is there any way for you to frame the conversation about moving to more skilled care about the other person (the sibling or the parent). So telling the more impaired person that the two of them need to move to care, so the less impaired person has more opportunities and isn't responsible for them? And telling the less impaired person that its so the other is safe?
Finally, it's not your job to prevent falls and medical emergencies. These are an UNAVOIDABLE part of aging. We have a lot of liability/medicalization focus on preventing these things, but ultimately those preventative measures often are in direct conflict with other real goals like movement and exercise, autonomy and (semi) independent living. Aging and ultimately dying is hard and complicated, and you can only partly manage it from the outside.
And not to add one other thing on, but have you had conversations about medical power of attorney and a living will/advanced directive? If you haven't, I don't mean to add another thing to your plate, but I would suggest it's urgent.
posted by mercredi at 9:15 AM on June 9, 2022 [3 favorites]