How can I best support my newly disabled dad?
October 21, 2017 3:21 AM Subscribe
My dad who is dealing with new & severe physical limitations - and I'm trying to understand what that must be like and figure out how to support him best. What advice do you have?
My dad has been dealing with some relatively new (increasing over the past six months or so) medical challenges that have left him, at least for the time being, in a wheelchair and physically limited from the waist down. There's a lot that's unclear about what to expect in the future, due to the nature of his condition, so it may or may not be permanent. He has about as good a medical team as one could ask for, solid insurance, etc., so the actual medical particulars are pretty well taken care of. He's been in hospital-based rehab for the last several weeks but he's headed home today. I'm trying to figure out what I can do to support him best (from a distance) and I'm really out of my depth.
His condition does not affect him cognitively and he seems to have a good attitude about everything, all things considered. He's honest about feeling frustrated but he's almost weirdly pragmatic about everything else. He's always been someone who, if he's going through something tough, says something like "yeah, it's very frustrating" when asked but otherwise just doesn't show it. He doesn't take it out on people in other ways or anything, he just...swallows it? I don't know, I don't understand, I'm someone who processes things very externally and I've never quite gotten how that sort of thing works for him. He's the sort of person who is hard to buy gifts for because he doesn't spend a lot of time thinking about or wanting things, but if there is something that makes sense to own, he just buys it - he doesn't really dwell on what isn't there, if that makes any sense. When he's needed help with something specific and easy to define like heavy lifting, getting someone to go to the house to meet the wheelchair-ramp-builders, whatever - he's had no problem asking friends and neighbors for favors (my parents do have a pretty solid social network, and they've been generous in others' times of need, so I think the resources are there as long as they need them.)
Before this started, he was extremely active in several physically demanding hobbies (ski patrol, volunteer firefighting, search and rescue, and random other volunteer EMT stuff) that were really meaningful and fun for him. I know losing that has been really difficult. He does have one social activity he can still do - his long-running board game group - which is a whole lot more than zero and I'm really glad he has that. He can still work - his job is entirely computer-based - and his employer has been tremendous about making necessary accommodations so that's great too.
I've never experienced such sudden physical limitations and I can't really imagine what it must feel like. I'm sure developing adaptations for - or needing to stop doing - a lot of previously-easy things is tiring and frustrating. I'm sure losing hobbies so quickly is hard. I'm sure there are so many things I haven't thought about. And I don't know what I can do to help. What does it...feel like, emotionally? What helps? Time? Adaptations? Are there narratives and books I should read to understand better? I'm so out of my depth, and I'm trying to embrace ring theory so I don't put any of the confusion and helplessness I feel back on him.
Some specific notes - we're both in the US, but on opposite coasts. I call daily-ish to chat (we've always been people who can kill hours talking about random stuff) and I'm trying to travel home as often as possible but that's still once every few months. My siblings are similarly far, and my dad has expressed that he strongly doesn't want his health to get in the way of us living our day-to-day lives (he's expressed that our whole lives - he feels strongly he wants to be placed in a nursing home rather than in one of our homes if/when the time comes, etc.) My mom is very present and capable and I know she's doing a lot to help him, but I think the focus has been more on the big-ticket needs (they've been building ramps and adding shower adaptations and stuff like that) than the other stuff and I'm worried about how much this will impact her as well. Oh yeah, and they're also newly-minted empty nesters as my youngest sibling started college while my dad was in the hospital. So anything I/we can do or say or help with from a distance is particularly appreciated, but also, what we can do when we're there in person (or arrange to have done in person) would be helpful. They live in a major city with pretty much endless services available (there are, like, an overwhelming number of sharing economy companies operating in the area) so I'm happy to arrange for stuff like that if I can just figure out what might be useful. They're financially comfortable enough that while things aren't necessarily money-no-object, it doesn't need to be a limiting factor for worthwhile changes/accommodations/expenses. I'm interested in all of the advice - the practical, the emotional, the fun and the silly - what I can do (& what I should be sure /not/ to do) to support him and meet his needs and try to help him live a happy and meaningful life with his new limitations.
My dad has been dealing with some relatively new (increasing over the past six months or so) medical challenges that have left him, at least for the time being, in a wheelchair and physically limited from the waist down. There's a lot that's unclear about what to expect in the future, due to the nature of his condition, so it may or may not be permanent. He has about as good a medical team as one could ask for, solid insurance, etc., so the actual medical particulars are pretty well taken care of. He's been in hospital-based rehab for the last several weeks but he's headed home today. I'm trying to figure out what I can do to support him best (from a distance) and I'm really out of my depth.
His condition does not affect him cognitively and he seems to have a good attitude about everything, all things considered. He's honest about feeling frustrated but he's almost weirdly pragmatic about everything else. He's always been someone who, if he's going through something tough, says something like "yeah, it's very frustrating" when asked but otherwise just doesn't show it. He doesn't take it out on people in other ways or anything, he just...swallows it? I don't know, I don't understand, I'm someone who processes things very externally and I've never quite gotten how that sort of thing works for him. He's the sort of person who is hard to buy gifts for because he doesn't spend a lot of time thinking about or wanting things, but if there is something that makes sense to own, he just buys it - he doesn't really dwell on what isn't there, if that makes any sense. When he's needed help with something specific and easy to define like heavy lifting, getting someone to go to the house to meet the wheelchair-ramp-builders, whatever - he's had no problem asking friends and neighbors for favors (my parents do have a pretty solid social network, and they've been generous in others' times of need, so I think the resources are there as long as they need them.)
Before this started, he was extremely active in several physically demanding hobbies (ski patrol, volunteer firefighting, search and rescue, and random other volunteer EMT stuff) that were really meaningful and fun for him. I know losing that has been really difficult. He does have one social activity he can still do - his long-running board game group - which is a whole lot more than zero and I'm really glad he has that. He can still work - his job is entirely computer-based - and his employer has been tremendous about making necessary accommodations so that's great too.
I've never experienced such sudden physical limitations and I can't really imagine what it must feel like. I'm sure developing adaptations for - or needing to stop doing - a lot of previously-easy things is tiring and frustrating. I'm sure losing hobbies so quickly is hard. I'm sure there are so many things I haven't thought about. And I don't know what I can do to help. What does it...feel like, emotionally? What helps? Time? Adaptations? Are there narratives and books I should read to understand better? I'm so out of my depth, and I'm trying to embrace ring theory so I don't put any of the confusion and helplessness I feel back on him.
Some specific notes - we're both in the US, but on opposite coasts. I call daily-ish to chat (we've always been people who can kill hours talking about random stuff) and I'm trying to travel home as often as possible but that's still once every few months. My siblings are similarly far, and my dad has expressed that he strongly doesn't want his health to get in the way of us living our day-to-day lives (he's expressed that our whole lives - he feels strongly he wants to be placed in a nursing home rather than in one of our homes if/when the time comes, etc.) My mom is very present and capable and I know she's doing a lot to help him, but I think the focus has been more on the big-ticket needs (they've been building ramps and adding shower adaptations and stuff like that) than the other stuff and I'm worried about how much this will impact her as well. Oh yeah, and they're also newly-minted empty nesters as my youngest sibling started college while my dad was in the hospital. So anything I/we can do or say or help with from a distance is particularly appreciated, but also, what we can do when we're there in person (or arrange to have done in person) would be helpful. They live in a major city with pretty much endless services available (there are, like, an overwhelming number of sharing economy companies operating in the area) so I'm happy to arrange for stuff like that if I can just figure out what might be useful. They're financially comfortable enough that while things aren't necessarily money-no-object, it doesn't need to be a limiting factor for worthwhile changes/accommodations/expenses. I'm interested in all of the advice - the practical, the emotional, the fun and the silly - what I can do (& what I should be sure /not/ to do) to support him and meet his needs and try to help him live a happy and meaningful life with his new limitations.
My mom is very present and capable and I know she's doing a lot to help him, but I think the focus has been more on the big-ticket needs (they've been building ramps and adding shower adaptations and stuff like that) than the other stuff and I'm worried about how much this will impact her as well.
I'm glad you're thinking about your mom in all of this. I'm in a similar situation, but its my mom who is incapacitated and my dad who has to now do all the shopping, cooking, laundry, assisting with biological needs, etc. Taking care of the caregiver is important to remember because they're not usually good at doing it themselves - especially when it is a spouse. The caregiver wants to do everything they possibly can to help the other get well and sometimes unintentionally neglects their own needs, which has the potential to create other sets of problems. Everyone needs to be well.
Can you arrange for a cleaning service to come in a few days or a delivery service to bring dinner to give your mom a little break? Send her giftcards for manicures/pedicures to get her out of the house a bit on her own? It might also give your dad a break of some alone time too.
posted by NoraCharles at 6:56 AM on October 21, 2017 [2 favorites]
I'm glad you're thinking about your mom in all of this. I'm in a similar situation, but its my mom who is incapacitated and my dad who has to now do all the shopping, cooking, laundry, assisting with biological needs, etc. Taking care of the caregiver is important to remember because they're not usually good at doing it themselves - especially when it is a spouse. The caregiver wants to do everything they possibly can to help the other get well and sometimes unintentionally neglects their own needs, which has the potential to create other sets of problems. Everyone needs to be well.
Can you arrange for a cleaning service to come in a few days or a delivery service to bring dinner to give your mom a little break? Send her giftcards for manicures/pedicures to get her out of the house a bit on her own? It might also give your dad a break of some alone time too.
posted by NoraCharles at 6:56 AM on October 21, 2017 [2 favorites]
Your dad sounds awesome, and like he's taking all of this really well. So where he may not need the support, focus on your mom, because she's just had her workload increase tremendously. I second a cleaning service, possible meals, see if you can get her set up for a massage or something on the regular - something that lets her have time to herself and helps her relax. This will be good for both her and your dad, because your dad will be aware that things are harder on her, and will want to help but won't be able to, which will up the stress on everyone.
posted by bile and syntax at 7:02 AM on October 21, 2017 [3 favorites]
posted by bile and syntax at 7:02 AM on October 21, 2017 [3 favorites]
It may help to provide emotional support to other family members to ensure that their struggles don't end up affecting your parents when they have their own stuff to deal with. For example, keep in touch with your college-freshman sibling to ensure they are doing okay (since they're probably more personally stressed by the situation than you since they were living at home so recently and because they're in a brand new situation themself).
posted by metasarah at 10:24 AM on October 21, 2017 [1 favorite]
posted by metasarah at 10:24 AM on October 21, 2017 [1 favorite]
It sounds like your father is adjusting well because he's a differently constructed person than you, and the things he's focused on are practical rather than emotional. That would be my focus, too.
I agree that your energy may be better expended supporting your mother and just providing your father with normalcy.
posted by DarlingBri at 4:09 PM on October 21, 2017 [1 favorite]
I agree that your energy may be better expended supporting your mother and just providing your father with normalcy.
posted by DarlingBri at 4:09 PM on October 21, 2017 [1 favorite]
I don't know what advice to give, but I can say that your description makes it sound like your dad is really content and at peace with his situation, and probably would do just fine without any more support than what he's getting right now.
(Of course, I hope you come up with some nice ways to help further! But I also hope you don't feel very sad if you can't figure out how to do much more. It might just be that there isn't too much that needs doing.)
posted by value of information at 6:53 PM on October 21, 2017
(Of course, I hope you come up with some nice ways to help further! But I also hope you don't feel very sad if you can't figure out how to do much more. It might just be that there isn't too much that needs doing.)
posted by value of information at 6:53 PM on October 21, 2017
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Having been through something similar with my mom, I would say that one helpful thing you can do (since many things are already taken care of) is to treat him the same as you always have. When you call, don't ask about his disability first. Instead, chat about your boyfriend troubles, that weird thing that happened at work, etc. Interacting with him in ways that don't have anything to do with his disability will become increasingly rare if his physical challenges continue. Being the person who sees him first and not his wheelchair will be a gift only you can give him. Also, don't forget to care for the caregiver. If you visit, take some time to go out for coffee just with mom so she can unburden about her struggles if she needs to do that.
One other thing. Be sure you listen to your dad and respond to what he asks for. It has been my experience that people with disabilities are sometimes overwhelmed by well-meaning people who want to provide something to the disabled person EVEN WHEN IT IS NOT WHAT THAT PERSON WANTS. If you think Dad needs a potty chair next to the bed, but what he asks for is a hand rail next to the toilet, get him the hand rail next to the toilet. Respond to what he asks for, not what you think he needs.
posted by eleslie at 5:35 AM on October 21, 2017 [12 favorites]