Older and not wiser - elderly family member demanding unavailable help
March 23, 2024 7:59 PM Subscribe
What do you do when a family member who is too frail to live on their own will only accept help from people who can't help as much as they need? If you accept that you must help to some degree, how do you endure constant criticism and demands for additional assistance that you can't give? How do you stop this pattern repeating over and over?
A very elderly family member ("Jack", age 98) usually lives with his daughter ("Laura", aged early 70s), who is about to go on holiday for a month. Jack is eligible for residential respite care or for paid carers to visit him in his home, but he has declined every kind of help because he believes the 2 grandchildren who live in his city should care for him. Between them, the local grandchildren (both mid-career professionals who have stacks of responsibilities already) can probably manage a total of 2 visits a week for a few hours each time, and this will not be enough. Jack has been told this multiple times, but this just results in a lot of ranting about how everyone is selfish and a tool of capitalism, and the information does not change his mind about refusing all the available help. This is a very similar scenario to what happened last time Laura went away, and Jack ended up in hospital, at least partly due to stress.
What I'd like to know:
- Has something similar happened in your family, and how did your family manage it?
- Is it meaningfully possible to help an elder to meet their practical and social needs when they can't seem to stop blasting you with negativity and criticism? What would appropriate boundaries look like in this case?
- How do you cope with anticipatory dread about feeling trapped in this situation?
- How do the family members stop getting sucked back into this same scenario every time Laura goes away?
Added notes:
- Recent interactions make me wonder whether Jack could benefit from a closer assessment of his emotional and mental situation, but this would not be in time to assist with the current conundrum. Assume Jack is cognitively sharp enough that he will not be seen as incompetent to make decisions.
- We are in Australia so suggestions of services etc will only be helpful if they're Australian or accessible here.
A very elderly family member ("Jack", age 98) usually lives with his daughter ("Laura", aged early 70s), who is about to go on holiday for a month. Jack is eligible for residential respite care or for paid carers to visit him in his home, but he has declined every kind of help because he believes the 2 grandchildren who live in his city should care for him. Between them, the local grandchildren (both mid-career professionals who have stacks of responsibilities already) can probably manage a total of 2 visits a week for a few hours each time, and this will not be enough. Jack has been told this multiple times, but this just results in a lot of ranting about how everyone is selfish and a tool of capitalism, and the information does not change his mind about refusing all the available help. This is a very similar scenario to what happened last time Laura went away, and Jack ended up in hospital, at least partly due to stress.
What I'd like to know:
- Has something similar happened in your family, and how did your family manage it?
- Is it meaningfully possible to help an elder to meet their practical and social needs when they can't seem to stop blasting you with negativity and criticism? What would appropriate boundaries look like in this case?
- How do you cope with anticipatory dread about feeling trapped in this situation?
- How do the family members stop getting sucked back into this same scenario every time Laura goes away?
Added notes:
- Recent interactions make me wonder whether Jack could benefit from a closer assessment of his emotional and mental situation, but this would not be in time to assist with the current conundrum. Assume Jack is cognitively sharp enough that he will not be seen as incompetent to make decisions.
- We are in Australia so suggestions of services etc will only be helpful if they're Australian or accessible here.
This has been an issue in my extended family and the only way to deal with it ended up being to accept the elderly person's autonomy, their right to make bad decisions for themselves, and their responsibility for the consequences.
Put that on a plaque. And part of that is, unfortunately, being aware that “Jack” may never understand that the corollary of insistence on autonomy is acceptance of the potential consequences: injury, worsening health, or worse... and may blame family for the effects of his decisions. You have my sympathies.
Your specific sub-questions… look, I hate to say this, but you are in a generally stressful and unpleasant situation that’s about to get worse. “Enforcing boundaries” is (in my experience) a fool’s errand in these situations. As long as y’all are communicating to “Jack” what you can do, you’ve done the best you can.
As far as the anticipatory dread, I found the usual stuff helpful—exercise, a (1) drink, meditation, trying to make time to see friends and vent.
posted by cupcakeninja at 4:09 AM on March 24 [6 favorites]
Put that on a plaque. And part of that is, unfortunately, being aware that “Jack” may never understand that the corollary of insistence on autonomy is acceptance of the potential consequences: injury, worsening health, or worse... and may blame family for the effects of his decisions. You have my sympathies.
Your specific sub-questions… look, I hate to say this, but you are in a generally stressful and unpleasant situation that’s about to get worse. “Enforcing boundaries” is (in my experience) a fool’s errand in these situations. As long as y’all are communicating to “Jack” what you can do, you’ve done the best you can.
As far as the anticipatory dread, I found the usual stuff helpful—exercise, a (1) drink, meditation, trying to make time to see friends and vent.
posted by cupcakeninja at 4:09 AM on March 24 [6 favorites]
how everyone is selfish and a tool of capitalism
On the (probably unlikely) chance that he's at all open to reason, if the reason is couched in his own terms: everyone in his family is living inside capitalism, which means they are forced by capitalism to spend most of their time on work and aren't able to provide 'round-the-clock unpaid labor to him. Him demanding care from others is him being an owner, treating them as an asset to squeeze free labor out of regardless of their own needs. Meanwhile there actually is a less-capitalist resource available to him (residential respite care)! In a socialist system it's not his personal descendants who would be taking care of him, it's the state. So at minimum he should be accepting and supporting the existence of this service, which society (including him) has paid for.
How do the family members stop getting sucked back into this same scenario every time Laura goes away?
Is it possible for Laura to start bringing in outside help while she's home? If Jack's resistance is rooted in part in a fear of strangers taking care of him, or abandonment, or being at the mercy of people who don't have any personal connection to him, then this would be a chance for him to develop a relationship with more carers, and maybe once he feels comfortable and familiar with them he would be willing to let them care for him while she's away.
posted by trig at 5:06 AM on March 24 [35 favorites]
On the (probably unlikely) chance that he's at all open to reason, if the reason is couched in his own terms: everyone in his family is living inside capitalism, which means they are forced by capitalism to spend most of their time on work and aren't able to provide 'round-the-clock unpaid labor to him. Him demanding care from others is him being an owner, treating them as an asset to squeeze free labor out of regardless of their own needs. Meanwhile there actually is a less-capitalist resource available to him (residential respite care)! In a socialist system it's not his personal descendants who would be taking care of him, it's the state. So at minimum he should be accepting and supporting the existence of this service, which society (including him) has paid for.
How do the family members stop getting sucked back into this same scenario every time Laura goes away?
Is it possible for Laura to start bringing in outside help while she's home? If Jack's resistance is rooted in part in a fear of strangers taking care of him, or abandonment, or being at the mercy of people who don't have any personal connection to him, then this would be a chance for him to develop a relationship with more carers, and maybe once he feels comfortable and familiar with them he would be willing to let them care for him while she's away.
posted by trig at 5:06 AM on March 24 [35 favorites]
Another possibility is to talk to one of Jack's neighbors and have them check on Jack daily. If you give them a small sum of money (which may be a lot to them if they are on a fixed income) for a daily visit and your phone numbers so they can call you if anything seems off, it may provide distraction for Jack and peace of mind for the family.
Another thing you might do is sign him up for meals for the elderly (in the US we call it "Meals on Wheels")
Having been in a similar scenario in the past, let me take a minute to advocate for Laura. Make sure her month off is carefree. DON'T call her or give her status updates on Jack. She needs to be cared for as well if she is going to continue in this role long-term
posted by eleslie at 5:29 AM on March 24 [13 favorites]
Another thing you might do is sign him up for meals for the elderly (in the US we call it "Meals on Wheels")
Having been in a similar scenario in the past, let me take a minute to advocate for Laura. Make sure her month off is carefree. DON'T call her or give her status updates on Jack. She needs to be cared for as well if she is going to continue in this role long-term
posted by eleslie at 5:29 AM on March 24 [13 favorites]
Also, if Jack has any friends who have their own professional caretakers, there's a chance he would be more open to having some things done by them (if they're able to split their hours temporarily) or by other carers in their professional or social network. "Recommended by a friend" or "I'm doing the same thing my friend is" can carry a lot of weight for some people and provide a more personal connection.
posted by trig at 5:43 AM on March 24 [2 favorites]
posted by trig at 5:43 AM on March 24 [2 favorites]
I was coming back for two reasons.
1) To suggest what trig said about strangers and getting to know people. The framing of your post leaves out the possibility of extended family (if any) or community/neighbor care (eleslie's idea), if that's a thing.
2) he believes the 2 grandchildren who live in his city should care for him
Conflict of family expectations and ability (and/or willingness) is tough, and can vary wildly from family to family and culture to culture. It can be a hard conflict to cope with, let alone manage. Journaling, therapy, etc. may help, but they don't fix the "rock and a hard place" situation that you are describing. This is such a basic sort of comment that I am almost embarrassed to offer it, but in moments of stress, I have variously found it helpful to:
* Pause and count to 10 when I'm stressed
* In stressful/anxious conversations, after "Jack" has spoken, pause for 2-3 seconds to think before responding, and to provide a micro-break to lower the tension
* Remind yourself that your active participation in this situation and conversations about it is already a form of care
* Remind yourself that "Jack" is expressing many things that may be hard (or impossible) to respond to in the way he wants, but they may be coming from a place of fear or worry. If you can find it in your heart to hear the worry and not the anger, that can be helpful.
re: "Laura": yes, sounds like she could likely use a real break. She is herself elderly, as such things are defined by the Australian Institute of Health and Welfare. If "Jack" lives another ten years and "Laura" remains his primary caregiver, she needs to refill her well, for everyone's sake.
posted by cupcakeninja at 6:29 AM on March 24 [5 favorites]
1) To suggest what trig said about strangers and getting to know people. The framing of your post leaves out the possibility of extended family (if any) or community/neighbor care (eleslie's idea), if that's a thing.
2) he believes the 2 grandchildren who live in his city should care for him
Conflict of family expectations and ability (and/or willingness) is tough, and can vary wildly from family to family and culture to culture. It can be a hard conflict to cope with, let alone manage. Journaling, therapy, etc. may help, but they don't fix the "rock and a hard place" situation that you are describing. This is such a basic sort of comment that I am almost embarrassed to offer it, but in moments of stress, I have variously found it helpful to:
* Pause and count to 10 when I'm stressed
* In stressful/anxious conversations, after "Jack" has spoken, pause for 2-3 seconds to think before responding, and to provide a micro-break to lower the tension
* Remind yourself that your active participation in this situation and conversations about it is already a form of care
* Remind yourself that "Jack" is expressing many things that may be hard (or impossible) to respond to in the way he wants, but they may be coming from a place of fear or worry. If you can find it in your heart to hear the worry and not the anger, that can be helpful.
re: "Laura": yes, sounds like she could likely use a real break. She is herself elderly, as such things are defined by the Australian Institute of Health and Welfare. If "Jack" lives another ten years and "Laura" remains his primary caregiver, she needs to refill her well, for everyone's sake.
posted by cupcakeninja at 6:29 AM on March 24 [5 favorites]
For Laura's upcoming absence is it possible for other family members to step in and help Jack's grandchildren with their responsibilities in order to allow them to visit Jack more frequently? Another possibility is for the grandchildren to bring other potential helpers with them, so Jack becomes more comfortable with alternate carers in Laura's absence, and would also signal that the grandchildren approve of the ancillary carers. Maybe Jack would accept these other people if he knows his grandchildren know and trust them. If they were people who were observant, tolerant of ranting, and could alert the grandchildren if his heath seems have declined this would effectively enlarge the group of carers he would accept.
This could be a temporary solution for this time Laura goes away, but could also set a precedent for future absences. Jack is obviously not getting any younger or more able to live independently, which he probably views with , but this could add a layer of help that could be employed in the future even when Laura is home.
I have become an informal carer (grocery shopping, rides to the bank/physician/ once or twice going to a hospital emergency room for a solvable problem) to a 98 year old of my own because his only local grandchild is a busy teacher and not available (nor, apparently particularly interested in carving out time to help) when the bank/physician is open for business. He's the father of a childhood friend so he does know me, though I hadn't seen him for many years until about 10 years ago. This man is in pretty good health, but he does accept my help because his actual children are not local and have their own health issues. I've also been the person he called when he needed to go to the hospital emergently, and I feel good about that. He is incredibly stubborn and lives alone in a big house - if he becomes disabled in some way and can't live alone any more I'm not sure what the family will do. I'll be reading the other answers for advice.
posted by citygirl at 6:50 AM on March 24 [6 favorites]
This could be a temporary solution for this time Laura goes away, but could also set a precedent for future absences. Jack is obviously not getting any younger or more able to live independently, which he probably views with , but this could add a layer of help that could be employed in the future even when Laura is home.
I have become an informal carer (grocery shopping, rides to the bank/physician/ once or twice going to a hospital emergency room for a solvable problem) to a 98 year old of my own because his only local grandchild is a busy teacher and not available (nor, apparently particularly interested in carving out time to help) when the bank/physician is open for business. He's the father of a childhood friend so he does know me, though I hadn't seen him for many years until about 10 years ago. This man is in pretty good health, but he does accept my help because his actual children are not local and have their own health issues. I've also been the person he called when he needed to go to the hospital emergently, and I feel good about that. He is incredibly stubborn and lives alone in a big house - if he becomes disabled in some way and can't live alone any more I'm not sure what the family will do. I'll be reading the other answers for advice.
posted by citygirl at 6:50 AM on March 24 [6 favorites]
A lot of repeating to myself "[Relative] is an adult and can do what they want and deal with the consequences."
posted by wintersweet at 12:42 PM on March 24 [1 favorite]
posted by wintersweet at 12:42 PM on March 24 [1 favorite]
... accept the elderly person's autonomy, their right to make bad decisions for themselves, and their responsibility for the consequences.
This is very important and something you must keep in mind no matter what else you may put in place. It's also important to ensure the person understands they are the one making decisions about their care and are able to refuse care if they wish. It can be incredibly hard to stand by and watch a relative make decisions that may well harm them, but trying to force care on an elderly person is a big no-no in the aged care sector. Unless and until it is determined they are not competent to make decisions on their own, you must honour their wishes.
In your situation, while the person is able to refuse care at the point of (eg) a caregiver turning up at the front door, there should be nothing to stop you arranging for professional carers to visit so that care is at least available if Jack decides he does want some help after all. Such visits would, at least, act as a regular 'welfare check' and an experienced carer will be skilled at persuading Jack to accept help, despite his feeling that family should be fulfilling this role. Home visits should be available as part of his aged care package. At the worst, having someone come in once a day on the days relatives can't make it will ensure he doesn't go longer than a day without help being available or at least confirm he's well enough to refuse help.
posted by dg at 6:06 PM on March 24 [3 favorites]
This is very important and something you must keep in mind no matter what else you may put in place. It's also important to ensure the person understands they are the one making decisions about their care and are able to refuse care if they wish. It can be incredibly hard to stand by and watch a relative make decisions that may well harm them, but trying to force care on an elderly person is a big no-no in the aged care sector. Unless and until it is determined they are not competent to make decisions on their own, you must honour their wishes.
In your situation, while the person is able to refuse care at the point of (eg) a caregiver turning up at the front door, there should be nothing to stop you arranging for professional carers to visit so that care is at least available if Jack decides he does want some help after all. Such visits would, at least, act as a regular 'welfare check' and an experienced carer will be skilled at persuading Jack to accept help, despite his feeling that family should be fulfilling this role. Home visits should be available as part of his aged care package. At the worst, having someone come in once a day on the days relatives can't make it will ensure he doesn't go longer than a day without help being available or at least confirm he's well enough to refuse help.
posted by dg at 6:06 PM on March 24 [3 favorites]
The man is 98. Realistically, this problem will end sooner rather than later. I would focus on the current Laura vacation. I would schedule some of the caregivers you mention he is eligible for and if he turns them away, he turns them away. I would also give him instructions on who to contact in an emergency. I would also stop by as often as feasible even if he says he does not want your/their help. Criticism? Remember, it is only a thankless job if you are expecting thanks. Let it roll off your back. I would just keep saying, "I am sorry, this is the best I can do. I cannot make others come and I cannot do more myself. I know you think that is terrible, but that is the way of the world these days."
Or, what dg and the others said above.
posted by JohnnyGunn at 7:39 PM on March 24 [2 favorites]
Or, what dg and the others said above.
posted by JohnnyGunn at 7:39 PM on March 24 [2 favorites]
I kind of disagree with some of these answers. There's no way I'd feel comfortable leaving someone who's 98 on their own because they're an adult. It sucks but sometimes you have to be unpleasantly blunt with people.
His grandchildren love him but they have their own life with responsibilities. They can't quit their jobs, ignore the kids/pets and whatever else needs done to devote their life to taking care of him. They're willing to help but they can't do it all. Tell him it would really help you and everyone else if he allows some outside help to come in and take care of things. Sympathize that it's uncomfortable but it's necessary and you don't want him to end up in the hospital like last time. Focus on his self interest. I'm sure he wants to avoid being in the hospital.
The idea of having paid help start coming over when his daughter is still there is good. It would give him a chance to meet them and he can't kick them out since his daughter gave the okay. She probably could use the help now anyway.
Work on not letting him make you feel guilty. It's a hard situation and you're doing the best you can for him. If he's angry, let him be angry. You're doing what you need to so he's safe and well cared for.
posted by stray thoughts at 5:19 PM on March 25
His grandchildren love him but they have their own life with responsibilities. They can't quit their jobs, ignore the kids/pets and whatever else needs done to devote their life to taking care of him. They're willing to help but they can't do it all. Tell him it would really help you and everyone else if he allows some outside help to come in and take care of things. Sympathize that it's uncomfortable but it's necessary and you don't want him to end up in the hospital like last time. Focus on his self interest. I'm sure he wants to avoid being in the hospital.
The idea of having paid help start coming over when his daughter is still there is good. It would give him a chance to meet them and he can't kick them out since his daughter gave the okay. She probably could use the help now anyway.
Work on not letting him make you feel guilty. It's a hard situation and you're doing the best you can for him. If he's angry, let him be angry. You're doing what you need to so he's safe and well cared for.
posted by stray thoughts at 5:19 PM on March 25
My FIL has MS and needs round the clock care. His partner is his full time at home carer but she needs respite and so goes on holiday occasionally for a break. This means my FIL has to go into respite care. He wants me and my husband to look after him but we have full time jobs and young kids and FIL can’t even walk or toilet himself so it’s not possible for us to do 24/7 care.
Our way of dealing with it is to literally tell him there’s no other choice. (We visit him every day while he’s there, he’s not just abandoned!). He doesn’t like it but FIL accepts it because if he doesn’t his partner will burn out and then he’ll be in nursing care full time.
Just because he doesn’t like it, doesn’t mean it’s still not the right thing to do. Sometimes you just need to put your foot down.
posted by Jubey at 11:10 PM on March 25 [1 favorite]
Our way of dealing with it is to literally tell him there’s no other choice. (We visit him every day while he’s there, he’s not just abandoned!). He doesn’t like it but FIL accepts it because if he doesn’t his partner will burn out and then he’ll be in nursing care full time.
Just because he doesn’t like it, doesn’t mean it’s still not the right thing to do. Sometimes you just need to put your foot down.
posted by Jubey at 11:10 PM on March 25 [1 favorite]
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Dealing with the person's anger and your guilt is harder, but accepting that this was a tough situation, and that their upset was understandable, helped a lot. Yes, it would be great if the situation were different, but it's not. Keep visits businesslike and regular, don't get bogged down in arguing about why you can't do more. If the person isn't coping, do what is necessary for their safety, including calling social services.
posted by rpfields at 9:18 PM on March 23 [22 favorites]