I think I need to move home to care for my family.
July 16, 2022 10:42 PM Subscribe
I have two vulnerable family members with complex and challenging issues. They are no longer able to function reliably. I think I need to move back to take care of them. This is breaking my heart. Mefites who have had to take care of relatives with bipolar disease or particularly challenging considerations: how did you cope?
I am not based in the US or the UK. The medical system where I currently am is quite different from both those countries. We do not have retirement facilities otherwise I would put my relatives in one. Eldercare is a crisis in this country because so many younger people have settled abroad. Traditionally elderly people would be taken care of by their children.
I am in the middle of a crisis situation at the moment, having had to fly back to my country of origin to take care of two relatives who live together. One has bipolar disease and is currently experiencing a manic episode. The other has dementia. Both of them can get violent when their illnesses are flaring up or poorly managed. We have no other close family members or friends who can offer practical support.
I have taken a number of practical measures, including getting my manic relative seen by a psychiatrist with a possibility of hospitalisation if things do not improve; and arranging for an overnight care-giver. But there is a limit to what I can arrange and oversee remotely and I think I need to move back here to take care of them.
My mind is overwhelmed with short-term concerns, such as the current situation with my relative's mania (it's extremely hard to handle both logistically and emotionally and could be the subject of at least 5 Asks in its own right); but also medium and long term concerns, such as how to manage both my relatives and the relationship between them, etc. What if they hurt each other? This terrifies me and is a reasonable concern. I know they have come to blows before. This also makes me very sad. They used to get along very well. But their illnesses turn them into different people.
But also, I worry for myself. The idea of leaving my friends and my apartment and my job makes me incredibly unhappy.
I have friends in this city, I know a good life is possible here. I know I could theoretically afford to travel back and visit the people I miss. I want to be actively happy, not just surviving; and I worry that managing two such vulnerable and demanding people will make it hard for me to spare the time to do things that make me happy. Maybe that is selfish, but I believe I get to be happy. I have had depression and Pure O OCD, and my mental health feels extremely destabilised at the moment with all the worry and concern.
I am trying to take care of myself. I try to sneak off when things are calm to read, or look at my phone, or whatever. I am being very transparent with various friends and family about exactly what is happening. (They are very sympathetic, but none of them are able to offer much in the way of practical support - just a lot of good wishes etc.) But I find it hard to sleep because I am so scared. I can't eat. I have a therapist but I don't have the privacy to speak with her.
I am not asking for practical solutions: as many Mefites are from the US and UK, the systems are going to be extremely different. I guess what I am asking for is hope. Have any of you had to move back to take care of unwell relatives with bipolar disorder and/or dementia? I'm guessing many of you have, but how did you manage to carve out a life for yourself amidst that, one that still had joy in it?
I am not based in the US or the UK. The medical system where I currently am is quite different from both those countries. We do not have retirement facilities otherwise I would put my relatives in one. Eldercare is a crisis in this country because so many younger people have settled abroad. Traditionally elderly people would be taken care of by their children.
I am in the middle of a crisis situation at the moment, having had to fly back to my country of origin to take care of two relatives who live together. One has bipolar disease and is currently experiencing a manic episode. The other has dementia. Both of them can get violent when their illnesses are flaring up or poorly managed. We have no other close family members or friends who can offer practical support.
I have taken a number of practical measures, including getting my manic relative seen by a psychiatrist with a possibility of hospitalisation if things do not improve; and arranging for an overnight care-giver. But there is a limit to what I can arrange and oversee remotely and I think I need to move back here to take care of them.
My mind is overwhelmed with short-term concerns, such as the current situation with my relative's mania (it's extremely hard to handle both logistically and emotionally and could be the subject of at least 5 Asks in its own right); but also medium and long term concerns, such as how to manage both my relatives and the relationship between them, etc. What if they hurt each other? This terrifies me and is a reasonable concern. I know they have come to blows before. This also makes me very sad. They used to get along very well. But their illnesses turn them into different people.
But also, I worry for myself. The idea of leaving my friends and my apartment and my job makes me incredibly unhappy.
I have friends in this city, I know a good life is possible here. I know I could theoretically afford to travel back and visit the people I miss. I want to be actively happy, not just surviving; and I worry that managing two such vulnerable and demanding people will make it hard for me to spare the time to do things that make me happy. Maybe that is selfish, but I believe I get to be happy. I have had depression and Pure O OCD, and my mental health feels extremely destabilised at the moment with all the worry and concern.
I am trying to take care of myself. I try to sneak off when things are calm to read, or look at my phone, or whatever. I am being very transparent with various friends and family about exactly what is happening. (They are very sympathetic, but none of them are able to offer much in the way of practical support - just a lot of good wishes etc.) But I find it hard to sleep because I am so scared. I can't eat. I have a therapist but I don't have the privacy to speak with her.
I am not asking for practical solutions: as many Mefites are from the US and UK, the systems are going to be extremely different. I guess what I am asking for is hope. Have any of you had to move back to take care of unwell relatives with bipolar disorder and/or dementia? I'm guessing many of you have, but how did you manage to carve out a life for yourself amidst that, one that still had joy in it?
I have a few stories about friends who have been handling situations reminiscent of yours, but the more I thought about them, the more I realized that none of them are doing it alone. One friend has a devoted husband and his very involved extended family who help with her dad. Another changed where they are getting their masters degree and are utilizing a lot of university resources to help with their mother, and that university is also where their best friend works. Yet another friend is living with her brother and his family to care for an adult relative with very high care needs. Yes, they’ve all moved far from where they had established jobs and friends, but all of them have moved where they either already had connections, or were not moving alone.
I think, if you have other people there who can support you in person, people who you can rekindle friendships with, or people who can introduce you to communities you want to be a part of, there is hope. But I think trying to do all this alone is asking too much of yourself. It would be a huge challenge even with one relative. That you’re taking responsibility for two people with differing needs is even bigger.
posted by Mizu at 12:00 AM on July 17, 2022 [6 favorites]
I think, if you have other people there who can support you in person, people who you can rekindle friendships with, or people who can introduce you to communities you want to be a part of, there is hope. But I think trying to do all this alone is asking too much of yourself. It would be a huge challenge even with one relative. That you’re taking responsibility for two people with differing needs is even bigger.
posted by Mizu at 12:00 AM on July 17, 2022 [6 favorites]
Is moving them to near your current home a potential situation? Would that be any better?
Honestly... I want to advise you not to do this. I understand that you may not feel you have another acceptable option, but I'm not convinced from your description that *this* option would turn out to be acceptable - or even sustainable - in the long-term.
(((hugs)))
posted by stormyteal at 12:06 AM on July 17, 2022 [13 favorites]
Honestly... I want to advise you not to do this. I understand that you may not feel you have another acceptable option, but I'm not convinced from your description that *this* option would turn out to be acceptable - or even sustainable - in the long-term.
(((hugs)))
posted by stormyteal at 12:06 AM on July 17, 2022 [13 favorites]
Do you or they have the financial means to hire in-house help? Having full-time or even part-time housekeeping, a driver, a regular home nurse to visit - huge. Look at your earning potential in your current country and the cost of these supports in their country. Can you work remotely and boost your income?
It's pretty common where I live in Singapore for people here to pay for elder care in another much cheaper country and visit frequently.
posted by dorothyisunderwood at 12:47 AM on July 17, 2022 [4 favorites]
It's pretty common where I live in Singapore for people here to pay for elder care in another much cheaper country and visit frequently.
posted by dorothyisunderwood at 12:47 AM on July 17, 2022 [4 favorites]
I did what you are describing. One factor to consider: does your relative with bipolar disorder have awareness of their illness and are they willing to be medicated, or do they have anosognosia? Anosognosia is a symptom that happens with a portion of bipolar patients where they insist they are not ill and it is everyone else who has a problem. You mention being able to arrange a psychiatrist and possible hospitalization, so it sounds like your relative might be compliant. Treatment will be much easier if your relative does not have anosognosia.
Just so you know, the US also has a crisis in this area. It is not so simple as "arranging an eldercare facility". One common outcome in these scenarios in the US is that the relative becomes homeless.
I found it helpful to go to support groups and talk to other people going through similar experiences. I met a bunch of people whose relative became homeless. So i felt relieved that I was able to prevent my relative from ending up living on the streets. I also met one person whose relative went to jail, and one person whose relative committed suicide. It was eye-opening to see the other outcomes, and support each other. If there are support groups available to you, I recommend them.
Good luck. I have been where you are, and it is painful and traumatizing. It is an initial horrible shock. Eventually you become more knowledgeable and therefore less overwhelmed by it. Hugs to you.
posted by vienna at 12:57 AM on July 17, 2022 [5 favorites]
Just so you know, the US also has a crisis in this area. It is not so simple as "arranging an eldercare facility". One common outcome in these scenarios in the US is that the relative becomes homeless.
I found it helpful to go to support groups and talk to other people going through similar experiences. I met a bunch of people whose relative became homeless. So i felt relieved that I was able to prevent my relative from ending up living on the streets. I also met one person whose relative went to jail, and one person whose relative committed suicide. It was eye-opening to see the other outcomes, and support each other. If there are support groups available to you, I recommend them.
Good luck. I have been where you are, and it is painful and traumatizing. It is an initial horrible shock. Eventually you become more knowledgeable and therefore less overwhelmed by it. Hugs to you.
posted by vienna at 12:57 AM on July 17, 2022 [5 favorites]
I'm wondering a few things:
* How diligently your relatives are managing their mental illnesses. (Sounds like you are managing your own quite well.) Often people subtly leave it to their more responsible family members to "pick up the pieces" of the consequences of their conditions. You do not owe it to anyone to do that.
* Why you don't think you deserve a quality life for yourself, because what you're contemplating will probably cause you to lose quality of life.
* How you think your presence there will truly benefit your family or yourself. Really and truly. I'm not saying this to disparage your abilities. It's that there's a fine line between helping and enabling.
Only if you are SURE you will have solid, regular in-person support if you make the move would I even begin to think it was a good idea. If you don't know that for sure, consider lining up third party support for your relatives or any of the other ideas suggested above.
Don't sacrifice your own well-being, especially if it's not clear that your presence will help in any concrete or substantial way.
posted by Sheydem-tants at 1:11 AM on July 17, 2022 [1 favorite]
* How diligently your relatives are managing their mental illnesses. (Sounds like you are managing your own quite well.) Often people subtly leave it to their more responsible family members to "pick up the pieces" of the consequences of their conditions. You do not owe it to anyone to do that.
* Why you don't think you deserve a quality life for yourself, because what you're contemplating will probably cause you to lose quality of life.
* How you think your presence there will truly benefit your family or yourself. Really and truly. I'm not saying this to disparage your abilities. It's that there's a fine line between helping and enabling.
Only if you are SURE you will have solid, regular in-person support if you make the move would I even begin to think it was a good idea. If you don't know that for sure, consider lining up third party support for your relatives or any of the other ideas suggested above.
Don't sacrifice your own well-being, especially if it's not clear that your presence will help in any concrete or substantial way.
posted by Sheydem-tants at 1:11 AM on July 17, 2022 [1 favorite]
Once upon a time I had some wilderness first aid training. A big component of the training was to first assess the situation and not put yourself into a situation where you become just one more person who needs rescuing. The context is different but the same principle applies here, I think: currently it sounds like you are managing your own mental health effectively, but how you would be able to hold up if you were to move back to care for your relatives is an important part of assessing the situation. I’m sorry I don’t have more to contribute than that. It sounds like your assessment of the situation is complicated on the one hand by cultural expectations and the associated guilt that can bring, and on the other hand by the significant personal sacrifice that moving back to care for your relatives would be. From what you’ve written, it sounds to me like those are balancing out and that you will make a reasonable and informed decision that accurately takes your own ability to help into account, though I’m sure it doesn’t feel like that to you at present. But hopefully the idea of assessing the situation to ensure that you would not be adding a third person who will need to be rescued/cared for is a helpful framing.
posted by eviemath at 7:43 AM on July 17, 2022 [6 favorites]
posted by eviemath at 7:43 AM on July 17, 2022 [6 favorites]
I'm really concerned that you may not actually be able to help. The two conditions you mention do not lend themselves to cooperation. If you were going back to help a relative with diabetes, you could help them by ensuring they get medication and suitable food throughout the day, and they could thrive with that assistance. Or if one of them had end stage kidney disease you could provide a lot of in home nursing care and pick up prescriptions and get them to appointments. Or if one of them was paraplegic you could help with that.
But you are hoping to help two people whose underlying conditions make them very hard to help. You could install smoke detectors but you can't provide either one of them the support that will stop them from trying to cook a meal and ripping the batteries out of the smoke detector and then setting the house on fire. There could be a perfectly good meal, set up on a tray for them and one of them could still turn the heat to high under a pan full of oil. You could put up a warning sign next to the telephone instructing them not to give data to scammers and telling them to let it go to voice mail, and either one of them could still stand in front of the sign reciting banking details to the nice supportive lady on the other end of the line. You could fill pill boxes every morning and give them each a timer that goes off when they need to take their midday pills and come home to find the timer stuffed under the mattress because the noise was annoying and the pills scattered on the floor.
When people have conditions that compromise their judgement they need constant vigilant supervision from someone who can stop them from doing things that are harmful. That's not actually something one person can do, and it is much worse when the person trying to help doesn't have the social authority to effectively stop them from doing things. You could easily end up in endless conversations like, "Mother, don't use the stove while I am asleep! That's why I hid the pots," being responded to with "Don't be silly dear, I just want to make onion rings. This disposable aluminum pie plate will do - it's metal!"
Worse, there is violence in the household going on, so every chance that you will get sucked into it, both on the receiving end if you say something that annoys someone and as the one committing violence when cajoling and talking fails to work, "Stay in your bedroom until I clean up the flood you made! You're tracking sewage through the house!" can turn into a wrestling match and next thing you know you've left bruises on someone's arms trying to stop them from going through that doorway.
Please do not take this step unless you have good evidence that you actually can help. Dementia is really, really hard because it feels like reasoning with the person should work, but in fact talking to someone with dementia is totally ineffective. They are going to forget and they are going to be unable to understand. It's steady and progressive. The dementia caretaker tries to turn back the deterioration so that the patient can do things they used to be able to do last week, while the patient loses the ability to do even more things. The caretaker is trying to get them to remember to wear shoes outside and the poor patient standing there in their stocking feet is moving into the stage where next week they will forget entirely about wearing pants outside as well.
Please don't muddle your own anxiety and grief and desire to make it not happen with a belief that you can slow down the course of a degenerative illness or make it better. It's a natural instinct. Someone you feel responsible for is going to have bad things happen to them - you want to be there to protect them. You know if you go there you could make meals and be sure the electricity bill gets paid - but those are small temporary comfort fixes. Eating healthy food is important and getting sores treated is important - but are nothing but palliative care because they can't help with the underlying issues of being unable to figure out when and how to eat, and being unable to stop nervously picking the skin with hands that are filthy. You may make a nice meal and the dementia patient will still wander out of the house to try and buy cookies. You may wash the patient's hands and cover the sores with wrappings and they will pull the wrappings off and start scratching while you are putting the materials away. Do not overestimate you ability to help. It's SO hard to make any difference.
Please don't go unless you have an end strategy in mind. You will destroy your own life if you end up in that house with no income because you dare not step away long enough to even work from home, half demented from lack of sleep, trying to help an adult who outweighs you with toileting as it gets increasingly hard to get their cooperation and the utilities get shut off anyway from non payment. What are you going to do to ensure it doesn't go in that direction? Because it can and it does. You won't feel any better if you give up and prioritize yourself only at that point, than if you make the cold blooded decision to prioritize yourself now. You really need to know how deep is too deep and how you are going to avoid drowning. It's so easy to drown.
posted by Jane the Brown at 9:08 AM on July 17, 2022 [25 favorites]
But you are hoping to help two people whose underlying conditions make them very hard to help. You could install smoke detectors but you can't provide either one of them the support that will stop them from trying to cook a meal and ripping the batteries out of the smoke detector and then setting the house on fire. There could be a perfectly good meal, set up on a tray for them and one of them could still turn the heat to high under a pan full of oil. You could put up a warning sign next to the telephone instructing them not to give data to scammers and telling them to let it go to voice mail, and either one of them could still stand in front of the sign reciting banking details to the nice supportive lady on the other end of the line. You could fill pill boxes every morning and give them each a timer that goes off when they need to take their midday pills and come home to find the timer stuffed under the mattress because the noise was annoying and the pills scattered on the floor.
When people have conditions that compromise their judgement they need constant vigilant supervision from someone who can stop them from doing things that are harmful. That's not actually something one person can do, and it is much worse when the person trying to help doesn't have the social authority to effectively stop them from doing things. You could easily end up in endless conversations like, "Mother, don't use the stove while I am asleep! That's why I hid the pots," being responded to with "Don't be silly dear, I just want to make onion rings. This disposable aluminum pie plate will do - it's metal!"
Worse, there is violence in the household going on, so every chance that you will get sucked into it, both on the receiving end if you say something that annoys someone and as the one committing violence when cajoling and talking fails to work, "Stay in your bedroom until I clean up the flood you made! You're tracking sewage through the house!" can turn into a wrestling match and next thing you know you've left bruises on someone's arms trying to stop them from going through that doorway.
Please do not take this step unless you have good evidence that you actually can help. Dementia is really, really hard because it feels like reasoning with the person should work, but in fact talking to someone with dementia is totally ineffective. They are going to forget and they are going to be unable to understand. It's steady and progressive. The dementia caretaker tries to turn back the deterioration so that the patient can do things they used to be able to do last week, while the patient loses the ability to do even more things. The caretaker is trying to get them to remember to wear shoes outside and the poor patient standing there in their stocking feet is moving into the stage where next week they will forget entirely about wearing pants outside as well.
Please don't muddle your own anxiety and grief and desire to make it not happen with a belief that you can slow down the course of a degenerative illness or make it better. It's a natural instinct. Someone you feel responsible for is going to have bad things happen to them - you want to be there to protect them. You know if you go there you could make meals and be sure the electricity bill gets paid - but those are small temporary comfort fixes. Eating healthy food is important and getting sores treated is important - but are nothing but palliative care because they can't help with the underlying issues of being unable to figure out when and how to eat, and being unable to stop nervously picking the skin with hands that are filthy. You may make a nice meal and the dementia patient will still wander out of the house to try and buy cookies. You may wash the patient's hands and cover the sores with wrappings and they will pull the wrappings off and start scratching while you are putting the materials away. Do not overestimate you ability to help. It's SO hard to make any difference.
Please don't go unless you have an end strategy in mind. You will destroy your own life if you end up in that house with no income because you dare not step away long enough to even work from home, half demented from lack of sleep, trying to help an adult who outweighs you with toileting as it gets increasingly hard to get their cooperation and the utilities get shut off anyway from non payment. What are you going to do to ensure it doesn't go in that direction? Because it can and it does. You won't feel any better if you give up and prioritize yourself only at that point, than if you make the cold blooded decision to prioritize yourself now. You really need to know how deep is too deep and how you are going to avoid drowning. It's so easy to drown.
posted by Jane the Brown at 9:08 AM on July 17, 2022 [25 favorites]
I don't know if this is a distinction that could be helpful to you, but "eldercare" is typically quite different from "dementia care" and includes such things as a specialized adult daycare or residential dementia homes. This is more part of the healthcare infrastructure than the eldercare structure, at least in the USA, though there are definitely overlaps. It seems to me that if you could get more care for your dementia relative, that would take huge pressure from you. Surely there is dementia care in their country? A more local professional, your relative's doctor perhaps, could possibly direct you to resources. A medical appointment to address the relative's needs might be the best way to proceed. This seems to me to be the most pressing issue, since dementia is always progressive and care needs will increase greatly as it progresses. There are a lot of issues in keeping someone with dementia at home, as posters have detailed above. I recently attended a social event with family members where a cousin had taken his moderately demented father into his home because he had wandered away twice from the eldercare home he had entered a couple of months before. He got locked outside in the middle of the night in the cold because he was convinced he'd left his car unlocked, and left the facility in his pajamas to check. He hasn't driven in a decade and had no car. The facility (not a dementia facility) insisted he move out since they could not provide the kind of 24/7 supervision he clearly needed. This kind of thing makes it imperative that your relative's care not just be your responsibility. You will need to sleep, perhaps work, have a few stretches of time to recharge yourself. And it will only become more overwhelming as time goes on. My cousin and his wife are now not able to leave his dad alone, ever. His sleep/wake cycle is off (very, very common) and he often wakes from naps convinced he needs to leave the house for something he's imagined, and argues loudly about being prevented from doing so. Belligerence and even violent hitting, scratching, etc. is sometimes part of a dementia illness, and care at home often becomes absolutely impossible. Surely there are some resources in your relative's country? Dementia occurs in every country, after all.
For your bipolar relative, if medication is not optimized or is not being taken regularly, there seems more possibility of your - or a local person assigned by you - to be helpful. If the care of the demented relative is relieved your other relative can have her mental health needs addressed more attentively.
Could you perhaps take a trip to their home to get care coordinated, find local quality services for your relatives and then move back to your home?
posted by citygirl at 10:24 AM on July 17, 2022 [2 favorites]
For your bipolar relative, if medication is not optimized or is not being taken regularly, there seems more possibility of your - or a local person assigned by you - to be helpful. If the care of the demented relative is relieved your other relative can have her mental health needs addressed more attentively.
Could you perhaps take a trip to their home to get care coordinated, find local quality services for your relatives and then move back to your home?
posted by citygirl at 10:24 AM on July 17, 2022 [2 favorites]
Ohhhhhh. I am so sorry.
I have experience with this too, and I've developed a personal rule. If I think I can "solve" the problem—like, help someone at end-of-life die with grace, or help stabilize someone in an emergency situation to the point where they can be sustainably okay—then I do it. I am willing to put time and energy into that. But I am not willing to sign up to become a permanent member of someone's crisis team.
I feel mean typing that, but I have learned the hard way that some people live in a state of permanent emergency, usually at least in part because of untreated/unacknowledged serious mental illness. I used to think that could be "fixed." But I've learned that for some people it can't/won't be. They are just going to be in crisis, no matter what.
So I learned to put a cap on my involvement. Like, I am willing to dedicate some amount of time or money to helping -- but I decide ahead of time how much it is, and it is not unlimited. Because otherwise you just get 100% sucked into the chaos. And it's very tempting to always think 'oh surely this (new doctor, new treatment, new intervention) is the path to solving the problem, but it never is. Some problems can't be solved.
I am worried about you, because I recognize the trajectory you're on. Like, getting your relative seen by a psychiatrist with possibility of hospitalization? I've been there. I remember thinking that was like, step 1 of maybe 10. It was not. It was step 1 of maybe 100,000. I do not have enough years in my life (nor does the other person) to take those 100,000 steps.
Sorry to such be a downer. Really. But like other commenters, I urge you to be realistic about what you can actually accomplish here, and moderate your efforts accordingly. Otherwise you risk sacrificing yourself for literally no payoff. It's not worth it.
posted by Susan PG at 2:46 PM on July 17, 2022 [7 favorites]
I have experience with this too, and I've developed a personal rule. If I think I can "solve" the problem—like, help someone at end-of-life die with grace, or help stabilize someone in an emergency situation to the point where they can be sustainably okay—then I do it. I am willing to put time and energy into that. But I am not willing to sign up to become a permanent member of someone's crisis team.
I feel mean typing that, but I have learned the hard way that some people live in a state of permanent emergency, usually at least in part because of untreated/unacknowledged serious mental illness. I used to think that could be "fixed." But I've learned that for some people it can't/won't be. They are just going to be in crisis, no matter what.
So I learned to put a cap on my involvement. Like, I am willing to dedicate some amount of time or money to helping -- but I decide ahead of time how much it is, and it is not unlimited. Because otherwise you just get 100% sucked into the chaos. And it's very tempting to always think 'oh surely this (new doctor, new treatment, new intervention) is the path to solving the problem, but it never is. Some problems can't be solved.
I am worried about you, because I recognize the trajectory you're on. Like, getting your relative seen by a psychiatrist with possibility of hospitalization? I've been there. I remember thinking that was like, step 1 of maybe 10. It was not. It was step 1 of maybe 100,000. I do not have enough years in my life (nor does the other person) to take those 100,000 steps.
Sorry to such be a downer. Really. But like other commenters, I urge you to be realistic about what you can actually accomplish here, and moderate your efforts accordingly. Otherwise you risk sacrificing yourself for literally no payoff. It's not worth it.
posted by Susan PG at 2:46 PM on July 17, 2022 [7 favorites]
I don't see any reason why you MUST be the one who takes care of these people. Is there a cultural expectation that you would assume this role? (Are you an unmarried woman, no kids?)
You do not have to set yourself on fire to keep others warm. You are not obligated to wreck the life you have built elsewhere. Seriously. I may sound cold and culturally insensitive, but what do you get out of this? Is there a support network that takes care of you in this new caregiver role? Or are you supposed to be a selfless giver, unless there's nothing left but a shell?
Pardon me, but eff that noise.
Also, I am someone who spent months and months caring for an ill parent, I felt the pull to up my roots and move back. But I didn't.
posted by computech_apolloniajames at 4:13 PM on July 17, 2022 [3 favorites]
You do not have to set yourself on fire to keep others warm. You are not obligated to wreck the life you have built elsewhere. Seriously. I may sound cold and culturally insensitive, but what do you get out of this? Is there a support network that takes care of you in this new caregiver role? Or are you supposed to be a selfless giver, unless there's nothing left but a shell?
Pardon me, but eff that noise.
Also, I am someone who spent months and months caring for an ill parent, I felt the pull to up my roots and move back. But I didn't.
posted by computech_apolloniajames at 4:13 PM on July 17, 2022 [3 favorites]
Here to say that Jane the Brown knows what she is talking about. I know this also to be true. You cannot save them from themselves and their disease processes. You will become collateral damage to their diseases - and neither of them will know what they did to you. They may even blame you for all that is going wrong for them because they are not themselves any longer, and grossly confused. As Jane said, "You won't feel any better if you give up and prioritize yourself only at that point, than if you make the cold blooded decision to prioritize yourself now."
Also, a key philosophy in nursing care is that people be "allowed to live at risk" - meaning even when in assistive living situations, people are allowed to get up and wander around within their environments - even if they are a fall risk. Dementia wards are more sparsely furnished so that these people have less equipment that could cause serious harm were they to misuse them, but they are still allowed to move around and do as they like within a relatively "safe" environment. Unfortunately, even in these environments, the people living there can also cause harm to other residents - either by walking into the wrong room and choosing the wrong bed, thinking that someone is their dead partner whom they don't realize has been gone for 20 years... it can go badly for either the one who walked in confused but amorous, or by the other who doesn't expect to be touched by a stranger.
Nursing staff are also at risk, but generally, they are trained and skilled enough to distract someone, de-escalate a situation, or recognize when someone is starting to get agitated and find a way to get them to take their medications. But nursing staff can GO HOME. They work in shifts. Others fill in for them. 24/7 presence in someone's life does NOT prevent issues from arising - but having regular check-ins at intervals throughout the day can vastly improve quality of life for those who need this assistance. Having you there, losing your vitality, losing your sanity, losing everything you've ever worked for (including love and finances) does NOT help the situation...
...think of it this way: If your family members could understand (if they had the capacity to understand, because they don't if they are dealing with these issues), what you'd be giving up in order for you to become their guardian/jailer/gatekeeper... just to watch them decline even with your assistance, and be ruined in the process - do you think they'd want you to sacrifice LIFE for a life of misery and inevitable decay and death? They'd also likely see you as the controlling one, preventing them from living as they want - when really, it is their disease processes that are doing that... but they'll never come to that realization if you want to swoop in and fix it all.
Yes, it is hard to imagine what they must be going through, but that's their path at this point in their lives. You can do what you can from afar, and know that it is the best anyone can truly do for them.
posted by itsflyable at 11:48 PM on July 17, 2022 [7 favorites]
Also, a key philosophy in nursing care is that people be "allowed to live at risk" - meaning even when in assistive living situations, people are allowed to get up and wander around within their environments - even if they are a fall risk. Dementia wards are more sparsely furnished so that these people have less equipment that could cause serious harm were they to misuse them, but they are still allowed to move around and do as they like within a relatively "safe" environment. Unfortunately, even in these environments, the people living there can also cause harm to other residents - either by walking into the wrong room and choosing the wrong bed, thinking that someone is their dead partner whom they don't realize has been gone for 20 years... it can go badly for either the one who walked in confused but amorous, or by the other who doesn't expect to be touched by a stranger.
Nursing staff are also at risk, but generally, they are trained and skilled enough to distract someone, de-escalate a situation, or recognize when someone is starting to get agitated and find a way to get them to take their medications. But nursing staff can GO HOME. They work in shifts. Others fill in for them. 24/7 presence in someone's life does NOT prevent issues from arising - but having regular check-ins at intervals throughout the day can vastly improve quality of life for those who need this assistance. Having you there, losing your vitality, losing your sanity, losing everything you've ever worked for (including love and finances) does NOT help the situation...
...think of it this way: If your family members could understand (if they had the capacity to understand, because they don't if they are dealing with these issues), what you'd be giving up in order for you to become their guardian/jailer/gatekeeper... just to watch them decline even with your assistance, and be ruined in the process - do you think they'd want you to sacrifice LIFE for a life of misery and inevitable decay and death? They'd also likely see you as the controlling one, preventing them from living as they want - when really, it is their disease processes that are doing that... but they'll never come to that realization if you want to swoop in and fix it all.
Yes, it is hard to imagine what they must be going through, but that's their path at this point in their lives. You can do what you can from afar, and know that it is the best anyone can truly do for them.
posted by itsflyable at 11:48 PM on July 17, 2022 [7 favorites]
This thread is closed to new comments.
I'm asking because it's difficult to answer your question without knowing whether you will be sacrificing yourself for no real benefit to your relatives. Is helping them within your power? Or is it a case of "I don't know but I have to try?"
posted by Zumbador at 11:25 PM on July 16, 2022 [15 favorites]