How to deal with relative's illness
October 19, 2020 10:58 AM Subscribe
I just spent 24 hours with a relative, who is my age, who has a debilitating illness affecting both their physical capabilities and their brain. I did not have much to do, apart from preparing meals and giving them their medicine, which left lots of time to think. That was a problem.
So now I am home and super sad (no surprise) but also exhausted from being worried the whole time if they might fall (not yet) and also about the general unfairness of life (again, no surprise). I want to be able to help this relative and their partner, to the extent possible, but the decline between a month ago and now was noticeable.
I am one of those sponge types and I am wondering how my nervous system can cope with being around this person and feeling shitty for them. I am super careful not to show it; we went for a walk and were able to laugh. But the clock is ticking on their ability to do things like put on shoes, etc. Like, they kind of couldn't without my help and that is new. Any and all advice about being helpful and not drowning in my feels in the process would be much appreciated.
Have spoken to their partner; eventually my relative will be shifted to a nursing home or similar facility when the partner believes it is necessary. So this is not about getting partner to acknowledge relative's decline, it is about me figuring out how to cope emotionally and also, not feel obligated to be there 24/7, which I have not been asked to do but am afraid not to do when partner is out of town. Relative has Lewy body dementia. Thanks!
So now I am home and super sad (no surprise) but also exhausted from being worried the whole time if they might fall (not yet) and also about the general unfairness of life (again, no surprise). I want to be able to help this relative and their partner, to the extent possible, but the decline between a month ago and now was noticeable.
I am one of those sponge types and I am wondering how my nervous system can cope with being around this person and feeling shitty for them. I am super careful not to show it; we went for a walk and were able to laugh. But the clock is ticking on their ability to do things like put on shoes, etc. Like, they kind of couldn't without my help and that is new. Any and all advice about being helpful and not drowning in my feels in the process would be much appreciated.
Have spoken to their partner; eventually my relative will be shifted to a nursing home or similar facility when the partner believes it is necessary. So this is not about getting partner to acknowledge relative's decline, it is about me figuring out how to cope emotionally and also, not feel obligated to be there 24/7, which I have not been asked to do but am afraid not to do when partner is out of town. Relative has Lewy body dementia. Thanks!
Best answer: You need to rely on your own support, as you provide support to your relatives. If you don’t have that support already, start building it now. Maybe that’s forming a working relationship with a therapist. Maybe it’s engaging with different or more social groups. Maybe it’s asking a significant other to help you out at home more than usual so you have space to process and grieve. You need to expand your circle outward, you know? Your relatives can’t currently reciprocate the care you are providing, but you do need that care; look outward for it. Use other people to check in with, ask them to remind you not to subsume yourself with this problem, take time for yourself.
From my own family history I can also say that getting your affairs in order can be really key in making progress on working through this kind of stuff emotionally. Like, making a will, deciding who would have power of attorney for you, talking to someone you trust about your wishes for long term care and even making a death plan so your wishes are followed. Confronting these inevitabilities can be really therapeutic and help you get on with the hard work of being a caretaker for someone else. Basically, half my family has done this, and the other half has sunk deeply into denial, made caretaking much harder for other people in the family, and created absolute chaos years down the line. So have a think about these things and see if part of the trouble you’re having is unresolved anxiety about questions this caretaking has created about your own future. Getting help with these can also be part of expanding your own support network.
posted by Mizu at 11:16 AM on October 19, 2020 [3 favorites]
From my own family history I can also say that getting your affairs in order can be really key in making progress on working through this kind of stuff emotionally. Like, making a will, deciding who would have power of attorney for you, talking to someone you trust about your wishes for long term care and even making a death plan so your wishes are followed. Confronting these inevitabilities can be really therapeutic and help you get on with the hard work of being a caretaker for someone else. Basically, half my family has done this, and the other half has sunk deeply into denial, made caretaking much harder for other people in the family, and created absolute chaos years down the line. So have a think about these things and see if part of the trouble you’re having is unresolved anxiety about questions this caretaking has created about your own future. Getting help with these can also be part of expanding your own support network.
posted by Mizu at 11:16 AM on October 19, 2020 [3 favorites]
Best answer: I first encountered therapy a little under two years ago, so I'm by no means an expert. But I was a sickly kid and have a chronic illness, and that's led me to an adulthood mired in anxiety around health and life and death. One of the practices therapy introduced me to is the Buddhist approach to contemplation of death. It's wise to wade into these practices gently, since they do get pretty gnarly as one's comfort with the approaches grows over time, but they are sensible and practical practices that help us acquaint ourselves with the realities of illness and death. Getting acquainted is one of many ways to cope with situations like these. Vox put out a podcast episode not long ago that might serve as a gentle intro. If you'd like some in-person guidance, there's quite possibly a zen group meeting near you (I recently went to an in-person meeting at the botanic gardens in my city, which was pretty amazing) and, also, therapists and counselors who specialize in grief would be ideal resources.
I hear you loud and clear on your sponge nature. I'm the same way. I really can't underscore the value I've found in having a confidante or two (and I don't just mean a therapist, I also mean a close friend with whom I feel comfortable discussing what might seem selfish to the wrong ears, i.e. my exhaustion from being empathetic and attentive to other peoples' needs). I have a friend who is just a empathetic as I am, who also isn't scared off by tears welling up, and he's also got a well-developed sense of humor that I appreciate. We make a good pair when it comes to talking to get the restless energy of these situations out of our "sponges." Do you have someone like that you can turn to when you need a release valve, or even just as healthy emotional maintenance on a regular schedule?
Lastly, I'd remind you that (from my perspective) your presence and participation is appreciated and gracious even if you can't hold yourself to the standard of decorum and stoicism that you aspire to. Sometimes... sometimes it's great to be the sick person who has a friend who doesn't sugarcoat anything and just openly struggles with their feelings in a difficult situation. For lack of sounding crass, misery loves company so don't be too hard on yourself no matter what.
posted by late afternoon dreaming hotel at 1:10 PM on October 19, 2020 [4 favorites]
I hear you loud and clear on your sponge nature. I'm the same way. I really can't underscore the value I've found in having a confidante or two (and I don't just mean a therapist, I also mean a close friend with whom I feel comfortable discussing what might seem selfish to the wrong ears, i.e. my exhaustion from being empathetic and attentive to other peoples' needs). I have a friend who is just a empathetic as I am, who also isn't scared off by tears welling up, and he's also got a well-developed sense of humor that I appreciate. We make a good pair when it comes to talking to get the restless energy of these situations out of our "sponges." Do you have someone like that you can turn to when you need a release valve, or even just as healthy emotional maintenance on a regular schedule?
Lastly, I'd remind you that (from my perspective) your presence and participation is appreciated and gracious even if you can't hold yourself to the standard of decorum and stoicism that you aspire to. Sometimes... sometimes it's great to be the sick person who has a friend who doesn't sugarcoat anything and just openly struggles with their feelings in a difficult situation. For lack of sounding crass, misery loves company so don't be too hard on yourself no matter what.
posted by late afternoon dreaming hotel at 1:10 PM on October 19, 2020 [4 favorites]
Best answer: When I was going through a few vaguely similar things, I found it comforting to read some of the human experience around disability and death.
I think the "one cool trick" realization that I had, and it was reading Jean Vanier's Becoming Human (sadly it turns out he was a jerkface) which is...we ascribe so much of our worth around things we can do, and do for others. But what if one of the things we "do" is letting others love us. Like, your relative is entering a season where they will need the care and love of others and what if...that in itself is fully, equally valuable, because that too is a big part of being human.
I hope I have explained that right. For me it helped me accept certain things and conditions of people around me...that this was their season or state, to be loved, not just a season of loss. And I could either withdraw from that reality and shut out that one day that is likely to be me too, or I could fiercely commit to being there despite being the person who wants to fix it all etc.
I think it is fine to grieve and feel everything that you are grieving and feeling, so I hope this doesn't come across as negating that.
Other books that are signposts for me in grief and loss and humanity:
When Bad Things Happen to Good People (terrible title, great book, has a religious bent to it but talks a lot about The Feelings of People)
When Things Fall Apart or most things by Pema Chodron
The Year of Magical Thinking and Blue Nights by Joan Didion
Still Alice by Lisa Genova (novel about dementia; I haven't seen the film)
posted by warriorqueen at 1:23 PM on October 19, 2020 [10 favorites]
I think the "one cool trick" realization that I had, and it was reading Jean Vanier's Becoming Human (sadly it turns out he was a jerkface) which is...we ascribe so much of our worth around things we can do, and do for others. But what if one of the things we "do" is letting others love us. Like, your relative is entering a season where they will need the care and love of others and what if...that in itself is fully, equally valuable, because that too is a big part of being human.
I hope I have explained that right. For me it helped me accept certain things and conditions of people around me...that this was their season or state, to be loved, not just a season of loss. And I could either withdraw from that reality and shut out that one day that is likely to be me too, or I could fiercely commit to being there despite being the person who wants to fix it all etc.
I think it is fine to grieve and feel everything that you are grieving and feeling, so I hope this doesn't come across as negating that.
Other books that are signposts for me in grief and loss and humanity:
When Bad Things Happen to Good People (terrible title, great book, has a religious bent to it but talks a lot about The Feelings of People)
When Things Fall Apart or most things by Pema Chodron
The Year of Magical Thinking and Blue Nights by Joan Didion
Still Alice by Lisa Genova (novel about dementia; I haven't seen the film)
posted by warriorqueen at 1:23 PM on October 19, 2020 [10 favorites]
Best answer: I'm so sorry you're going through this! Caring for a loved one is draining on many levels, especially for those of us who are susceptible to the emotions of others. I very much encourage you to try a support group for caregivers of people with dementia. You can contact the Lewy Body Dementia Association at lbda.org or by calling the Lewy Line at 800-539-9767. I can't find anything about current support groups on the website, but the Lewy Line can probably help with that. The Alzheimer's Association support groups are open to part-time and full-time caregivers/loved ones, of people with all kinds of dementia, despite the name of the group. They're all virtual right now bc Covid. You can find them here or by calling the Helpline at 800-272-3900.
Something extra tough about LBD is the fluid nature of the symptoms. Family member might have seemed worse today, seem better the next time you see them, and worse again a third time. This rollercoaster can be even more exhausting than a steady decline, so just be aware of that when you make your next visits.
posted by assenav at 4:12 PM on October 19, 2020 [2 favorites]
Something extra tough about LBD is the fluid nature of the symptoms. Family member might have seemed worse today, seem better the next time you see them, and worse again a third time. This rollercoaster can be even more exhausting than a steady decline, so just be aware of that when you make your next visits.
posted by assenav at 4:12 PM on October 19, 2020 [2 favorites]
Best answer: First of all, you're doing a really wonderful thing and I'm so sorry you're having to go through this. These are two really small recommendations from my part (much wiser things have been said upthread) but I volunteer on a Rape Crisis hotline and the two best pieces of advice about secondary trauma I got was (1) not to worry if I was reacting "wrong" internally, not to beat myself up for not being affected enough or being affected too much - there's no right way to feel about facing up to someone else's pain, there's only the right thing to do, and if you are doing that all the morbid humour or intrusive thoughts or feeling like you're making it about you by needing self care are completely valid ways to try and cope with that and (2) the book "Trauma Stewardship" which was originally more about medical/social workers but for me also really spoke to the experience of caregiving for a loved one and of secondary trauma. You are doing something so hard, so well - I hope you are reaching out wherever you can.
posted by MarianHalcombe at 4:27 AM on October 20, 2020 [1 favorite]
posted by MarianHalcombe at 4:27 AM on October 20, 2020 [1 favorite]
This thread is closed to new comments.
It's hard stuff. You can take pride in the fact that you are putting this beautiful kindness into the world.
posted by fingersandtoes at 11:05 AM on October 19, 2020 [11 favorites]