Caretaking: How to deal with parents' rapid joint decline from afar?
December 7, 2021 3:46 PM Subscribe
My dad has suffered major health problems forcing him into early retirement and pushing my mom into an abrupt caretaker role. He was a high earner and his income supported my mom's "vanity" business which will now need to close in the near future. My mom is NOT taking this well and rapidly descending into serious depression, anxiety and alcoholism.
I live in a different state and can only occasionally visit. I'm the only one who knows the true extent of their situation and not sure how to navigate additional care for them considering issues around HIPAA, etc.
My dad has disability income and both have SS income kicking in, they're not destitute by any means, but will need to adjust to living on probably less than 50% of their previous income. My mom currently has full PoA with my dad.
While my mom pops up early in the morning, takes care of my dad and is generally functional during the day, by 5:00 pm she has descended into a drunken stupor, sometimes threatening suicide and saying other dark and resentful things to my dad. I'm worried that my dad could have an issue later at night and she won't be capable of taking care of it.
My mom agrees she needs help but she's not proactive about it, and I don't know how to compel her to take the necessary steps to get help. My parents' primary doctor doesn't seem to fully know or care about her drinking situation and I don't know if I can even interact with her doctor or how best to coordinate additional therapy and/or other alcohol use disorder services on her behalf.
My dad is impaired to the point he has trouble using the phone, difficulty with memory...so it's very hard to buck him up and get him to retain ideas of how to disengage with my mom when she's drinking, so he calls me almost every other night scared about my mom's condition.
What is a realistic action plan considering my out-of-state distance and other challenges in facilitating additional care for my mom? Are there specific services related to caretaking and AUD people might be able to recommend? Thank you.
I live in a different state and can only occasionally visit. I'm the only one who knows the true extent of their situation and not sure how to navigate additional care for them considering issues around HIPAA, etc.
My dad has disability income and both have SS income kicking in, they're not destitute by any means, but will need to adjust to living on probably less than 50% of their previous income. My mom currently has full PoA with my dad.
While my mom pops up early in the morning, takes care of my dad and is generally functional during the day, by 5:00 pm she has descended into a drunken stupor, sometimes threatening suicide and saying other dark and resentful things to my dad. I'm worried that my dad could have an issue later at night and she won't be capable of taking care of it.
My mom agrees she needs help but she's not proactive about it, and I don't know how to compel her to take the necessary steps to get help. My parents' primary doctor doesn't seem to fully know or care about her drinking situation and I don't know if I can even interact with her doctor or how best to coordinate additional therapy and/or other alcohol use disorder services on her behalf.
My dad is impaired to the point he has trouble using the phone, difficulty with memory...so it's very hard to buck him up and get him to retain ideas of how to disengage with my mom when she's drinking, so he calls me almost every other night scared about my mom's condition.
What is a realistic action plan considering my out-of-state distance and other challenges in facilitating additional care for my mom? Are there specific services related to caretaking and AUD people might be able to recommend? Thank you.
This might sound like a lot of work, but I would really look into (mental health) therapy for all of you. I know what it’s like to have your health situation change suddenly, and it is stressful, hard and lonely at times for both the person and those around them in their support system. I put it off for 10 years after my incident after a poor first experience with a therapist, and only now am realizing how beneficial having a safe place to express my hopes/fears/worries/etc would have helped in adapting to my new reality.
posted by carabiner at 5:46 PM on December 7, 2021 [1 favorite]
posted by carabiner at 5:46 PM on December 7, 2021 [1 favorite]
Best answer: An eldercare socialworker can help with a lot of questions about what is even possible. My brother called the local elderservices agency near where mom lived and asked them for a recommendation. We didn't understand what the options for care were, and the social worker did. Caveat, they weren't cheap ($75 an hour?) - but you don't need that person doing actual hands-on care for your parents, you want them to help you and them figure out options.
If you visit to meet with the eldercare social worker, they may be able to help you with questions like gathering contact info for your parents' doctors. Your mom's doctor might not be able to share info with You unless she agrees to that, but you can always call/email them to mention a problem.
But mostly, if you can help your folks get the care they need, it'll help both of them. Whether or not they can afford all of the care may be a question, but an eldercare social worker can help you figure out 1) what your dad needs, 2) what the possible help would cost, and 3) might even be able to help your mom by, at the very least, easing her care burden.
I'm sorry, as a fellow child trying to help from a distance, this stuff is Hard. My experience got better when my remaining parent moved into an assisted living that helps with things like showers and falls (and will help with other things as the need increases). Her doctor was the one who convinced her, so doctors can be important allies. Good luck!
posted by ldthomps at 6:39 PM on December 7, 2021 [5 favorites]
If you visit to meet with the eldercare social worker, they may be able to help you with questions like gathering contact info for your parents' doctors. Your mom's doctor might not be able to share info with You unless she agrees to that, but you can always call/email them to mention a problem.
But mostly, if you can help your folks get the care they need, it'll help both of them. Whether or not they can afford all of the care may be a question, but an eldercare social worker can help you figure out 1) what your dad needs, 2) what the possible help would cost, and 3) might even be able to help your mom by, at the very least, easing her care burden.
I'm sorry, as a fellow child trying to help from a distance, this stuff is Hard. My experience got better when my remaining parent moved into an assisted living that helps with things like showers and falls (and will help with other things as the need increases). Her doctor was the one who convinced her, so doctors can be important allies. Good luck!
posted by ldthomps at 6:39 PM on December 7, 2021 [5 favorites]
My mom agrees she needs help but she's not proactive about it, and I don't know how to compel her to take the necessary steps to get help
This isn't unusual. Agreeing "to get help" can be a kind of fallback defensive position; it somewhat appeases concerned loved ones, but it's vague and not leading to any actual action, so.....you can keep drinking.
I'd expect resistance, but if there is any chance she could try an online AA meeting, then that could be beneficial. If she's not open to that, then there are other recovery groups that maybe she would agree to trying. Even just get her to start reading alcohol recovery forums. She needs to establish communications with other people who have been where she is. If you can even just get some sort of harm reduction going, like she stops drinking before she reaches a stage of just passing out, that would at least be a start.
It's not possible to offer much in the way of advice without really knowing someone's situation. Is she an alcoholic, needing to seek permanent abstinence, or is she a person abusing alcohol as an attempt at coping, who could potentially stop doing so? Does she need to detox to safely stop drinking? Does she need rehab? It's difficult to find answers to these questions even under better conditions. I'm sorry that you and your family are going through this.
posted by thelonius at 7:21 PM on December 7, 2021
This isn't unusual. Agreeing "to get help" can be a kind of fallback defensive position; it somewhat appeases concerned loved ones, but it's vague and not leading to any actual action, so.....you can keep drinking.
I'd expect resistance, but if there is any chance she could try an online AA meeting, then that could be beneficial. If she's not open to that, then there are other recovery groups that maybe she would agree to trying. Even just get her to start reading alcohol recovery forums. She needs to establish communications with other people who have been where she is. If you can even just get some sort of harm reduction going, like she stops drinking before she reaches a stage of just passing out, that would at least be a start.
It's not possible to offer much in the way of advice without really knowing someone's situation. Is she an alcoholic, needing to seek permanent abstinence, or is she a person abusing alcohol as an attempt at coping, who could potentially stop doing so? Does she need to detox to safely stop drinking? Does she need rehab? It's difficult to find answers to these questions even under better conditions. I'm sorry that you and your family are going through this.
posted by thelonius at 7:21 PM on December 7, 2021
Best answer: alcohol is a so-so painkiller, a pretty good numbing agent, and the only mental escape for someone alone with their burdens and bound by the iron chains of moral commitment not to seek literal physical escape. the way to convince her to stop using it for these purposes is to offer her superior alternatives that give the same relief without the health risks. there may not be any.
she does "need help", as you say: with her husband's full-time care. alcohol is only very indirectly the thing she needs help with; she is using it AS the help because it's all she's got. this isn't good! or in any way your fault! but the problem here is not that your mother is falling down on the job and being irresponsible, but that she has been drafted into a job that nobody old enough to have adult children can do full-time in the long term.
I'm worried that my dad could have an issue later at night and she won't be capable of taking care of it.
this is a valid worry. Your mother is also having issues right now and nobody is capable of taking care of her. working from early in the morning to 5 at night is the limit of what can reasonably be asked of her day in and day out forever; there is no way she can be expected to stay on the clock round the clock dawn to dusk and on call all night as well, too. if she never had another drink she'd still need sleep. getting her help cannot be a euphemism for getting her into shape to be the permanent help.
and knowing that this is what's needed doesn't do a thing to make it practically possible or affordable, I know. but even just affirming to her that she needs help for her, for her life, not simply to help your father through her, is something. the sense of isolation, imprisonment, her life being effectively over, are things you can combat to some extent with emotional support from a distance. but I do not think that exhorting her to "get help" is the way. there's only so much a person can do to help themselves when their whole life is taken up with helping their partner.
posted by queenofbithynia at 9:51 PM on December 7, 2021 [22 favorites]
she does "need help", as you say: with her husband's full-time care. alcohol is only very indirectly the thing she needs help with; she is using it AS the help because it's all she's got. this isn't good! or in any way your fault! but the problem here is not that your mother is falling down on the job and being irresponsible, but that she has been drafted into a job that nobody old enough to have adult children can do full-time in the long term.
I'm worried that my dad could have an issue later at night and she won't be capable of taking care of it.
this is a valid worry. Your mother is also having issues right now and nobody is capable of taking care of her. working from early in the morning to 5 at night is the limit of what can reasonably be asked of her day in and day out forever; there is no way she can be expected to stay on the clock round the clock dawn to dusk and on call all night as well, too. if she never had another drink she'd still need sleep. getting her help cannot be a euphemism for getting her into shape to be the permanent help.
and knowing that this is what's needed doesn't do a thing to make it practically possible or affordable, I know. but even just affirming to her that she needs help for her, for her life, not simply to help your father through her, is something. the sense of isolation, imprisonment, her life being effectively over, are things you can combat to some extent with emotional support from a distance. but I do not think that exhorting her to "get help" is the way. there's only so much a person can do to help themselves when their whole life is taken up with helping their partner.
posted by queenofbithynia at 9:51 PM on December 7, 2021 [22 favorites]
It seems your parents need a caregiver ASAP, to check on them at least a couple hours a day.
I don't suppose moving to assisted living is an option?
posted by kschang at 9:51 PM on December 7, 2021
I don't suppose moving to assisted living is an option?
posted by kschang at 9:51 PM on December 7, 2021
I'm offering an entirely different perspective on the underlying financial situation. As a "high earner" I would be very surprised if your dad didn't have investment income he could tap. Does he have IRAs, 401k's, life insurance, disability insurance and the like? Can you have a frank talk with your dad and mom, especially if his disability might make communication in the future much harder. If he has a financial advisor organizing this perhaps your dad would allow you to contact them for an overview. They may have potentially significantly more income to ease their situation.
It seems like part of the stress for them is a drop in income, and I think it would be surprising if they must now live only on your dad's disability and Social Security.
Hiring a caretaker or at least a houskeeping aide could reduce the pressure on your mom, and investigating resources can make this easier to afford. Caretakers, especially healthcare aides are expensive and the need only increases over time. It sounds like your parents have lead somewhat separate lives, and constant contact, much less a caretaking role probably increases pressure on a woman who doesn't handle it well.
I wonder if any of these "vanity businesses" might, in fact, have a dollar value. Would it be possible to sell one or more business to add to the financial pot?
posted by citygirl at 6:36 AM on December 8, 2021 [3 favorites]
It seems like part of the stress for them is a drop in income, and I think it would be surprising if they must now live only on your dad's disability and Social Security.
Hiring a caretaker or at least a houskeeping aide could reduce the pressure on your mom, and investigating resources can make this easier to afford. Caretakers, especially healthcare aides are expensive and the need only increases over time. It sounds like your parents have lead somewhat separate lives, and constant contact, much less a caretaking role probably increases pressure on a woman who doesn't handle it well.
I wonder if any of these "vanity businesses" might, in fact, have a dollar value. Would it be possible to sell one or more business to add to the financial pot?
posted by citygirl at 6:36 AM on December 8, 2021 [3 favorites]
Best answer: This sounds like a nightmare for all of you and I am sorry you are facing it. I was a long-distance caretaker of sorts for my dad in the sense that I was the contact for his nurse, healthcare, etc. Which was challenging given that I lived in another country.
I would strongly encourage you to outsource an assessment of what resources are available to your parents. That means financially (perhaps you and your mother might need to do that together) and medically for both your parents. If your parents have the means, paying for an eldercare social worker to help assess the situation and/or a case manager would be completely worth it.
You can explain the situation confidentially to whomever is hired and get their take on the frequency and urgency of adding additional caretakers to the caretaker team. Some places have respite programs that take over care for a weekend or some period of time so the primary family caretaker can get some rest. Your mom should not be the 24/7 caretaker; that will kill them both prematurely. (But if they insist, well, it's their decision.)
I would encourage you to attend online or in-person (if safe) meetings of Al-Anon, the fellowship for family members and friends who love people with drinking problems. Your mom may not consider her drinking a problem. But if you consider her drinking a problem, check out Al-Anon and its resources for helping you cope with the situation. Al-Anon is about self-help for you, not fixing your mom. (Note: I am not religious nor spiritual, but Al-Anon has helped my life enormously, especially when I spent a month with my dad as he was dying.)
This situation, though common, is deeply sad and painful. So please, get all the support you personally can to help deal with the new and declining normal. Try not to be too judgmental of either of your parents, at least not to their faces. If there is anything you can do in your conversations with them to still sound like their son, someone who loves them and discusses whatever y'all used to discuss before things got so bad, try to do that from time to time. Everyone I know who has ever been this kind of sick or done this kind of caretaking has been grateful for moments when they got to talk and think about other things.
Good luck!
posted by Bella Donna at 12:30 PM on December 8, 2021 [1 favorite]
I would strongly encourage you to outsource an assessment of what resources are available to your parents. That means financially (perhaps you and your mother might need to do that together) and medically for both your parents. If your parents have the means, paying for an eldercare social worker to help assess the situation and/or a case manager would be completely worth it.
You can explain the situation confidentially to whomever is hired and get their take on the frequency and urgency of adding additional caretakers to the caretaker team. Some places have respite programs that take over care for a weekend or some period of time so the primary family caretaker can get some rest. Your mom should not be the 24/7 caretaker; that will kill them both prematurely. (But if they insist, well, it's their decision.)
I would encourage you to attend online or in-person (if safe) meetings of Al-Anon, the fellowship for family members and friends who love people with drinking problems. Your mom may not consider her drinking a problem. But if you consider her drinking a problem, check out Al-Anon and its resources for helping you cope with the situation. Al-Anon is about self-help for you, not fixing your mom. (Note: I am not religious nor spiritual, but Al-Anon has helped my life enormously, especially when I spent a month with my dad as he was dying.)
This situation, though common, is deeply sad and painful. So please, get all the support you personally can to help deal with the new and declining normal. Try not to be too judgmental of either of your parents, at least not to their faces. If there is anything you can do in your conversations with them to still sound like their son, someone who loves them and discusses whatever y'all used to discuss before things got so bad, try to do that from time to time. Everyone I know who has ever been this kind of sick or done this kind of caretaking has been grateful for moments when they got to talk and think about other things.
Good luck!
posted by Bella Donna at 12:30 PM on December 8, 2021 [1 favorite]
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My FIL as his need has increased, has gone from one visit a day from a disability/care aide to three times a day. They help toilet him, do odd chores around the house and basically take the pressure off his partner so she can get out and get a coffee or have a walk or wash her own hair. This care is government subsidised based in need and he’s considered the highest need before it’s time for a nursing home. (We’re in Australia, not sure where you are.)
On top of that, after ten years of his partner going solo in managing my FIL’s care, my family and I have moved from across the country to help support them too. My husband looks after him sometimes during weekend nights so she can go out with friends and we catch up during the week and do what we can. It has been a massive upheaval for our whole family to say the least but it has been worthwhile and they both live having us around and the break we can give them.
To be honest my FIL should be in full time care but that’s not what they want so we support them as best we can. We don’t know how much longer we will have him for so just being able to be here for him is worth it.
I think your mother needs a lot of additional support in caring for your dad. The drinking most likely comes from her being overwhelmed and also losing her business/sense of purpose and independence. I would look into additional support services for your father to take the pressure off her. Make sure she’s getting out of the house and having a social life. Being a caregiver is exceptionally lonely and isolating.
Talk to both their doctors about what extra services are available for people in their situation. If he has a common illness like MS or Parkinson’s there will be groups you can contact whose job is to help you navigate this.
Then you can tackle the drinking, but you need to deal with the root of it. Is it possible for you to move closer to them? I’m so sorry your family is dealing with this. I know how heartbreaking it is. PM me if you need to.
posted by Jubey at 4:49 PM on December 7, 2021 [14 favorites]