Help me help my friend who had a stroke, without going crazy.
August 2, 2013 11:30 AM Subscribe
I want to know if anyone has had experience with a loved one having a stroke, and did it change them permanently or temporarily? Is his new verbal introspection stroke-related?
And for caregivers of loved ones with any sort of health issue, how can I be there for him, in the way he needs me, and not end up tired and cranky (which helps NO ONE).
My Oldest Friend In the World (I've known him since we were ten years old), is now my roommate, and he recently had a stroke.
The first month was all adrenalin-fueled reactions, caring for him at the hospital, getting him home, rushing him back to the e/r, setting up his medication routine, consulting with doctors, all that. Then, as things settled down, I realized he has changed quite a bit. We are both very verbal, and now he is even more-so. He wants to talk -- in depth -- about everything, but especially about us, and our communication issues, and my faults as a roommate.
His criticisms are not unfounded. But, after two months of this hell, I want a gold star for my efforts, not a progress report on what I'm doing wrong, even if it is valid. Not right now.
My Oldest Friend In the World (I've known him since we were ten years old), is now my roommate, and he recently had a stroke.
The first month was all adrenalin-fueled reactions, caring for him at the hospital, getting him home, rushing him back to the e/r, setting up his medication routine, consulting with doctors, all that. Then, as things settled down, I realized he has changed quite a bit. We are both very verbal, and now he is even more-so. He wants to talk -- in depth -- about everything, but especially about us, and our communication issues, and my faults as a roommate.
His criticisms are not unfounded. But, after two months of this hell, I want a gold star for my efforts, not a progress report on what I'm doing wrong, even if it is valid. Not right now.
I had a friend who got a BAD concussion, and to make matters worse he was a psychologist, so probably already prone to self-reflection. For a while it was all "am I making sense?" and "I am speaking clearly, right?"
This sounds a little different, but I can also tell you that after a trauma one often becomes very angry after the smoke clears. I was really nice to everyone when I wound up in the hospital after an accident and then when I was well on the way to mending I noticed I was very angry about what all I'd been through.
Have a gold star from me; it may be a few months before your friend is back to his old self, but if he's as recovered from the STROKE as it sounds, I think his personality will get better.
posted by randomkeystrike at 12:23 PM on August 2, 2013 [1 favorite]
This sounds a little different, but I can also tell you that after a trauma one often becomes very angry after the smoke clears. I was really nice to everyone when I wound up in the hospital after an accident and then when I was well on the way to mending I noticed I was very angry about what all I'd been through.
Have a gold star from me; it may be a few months before your friend is back to his old self, but if he's as recovered from the STROKE as it sounds, I think his personality will get better.
posted by randomkeystrike at 12:23 PM on August 2, 2013 [1 favorite]
The Brain Injury Association is a great resource for support for caregivers and for people who have survived stroke and other injuries. They have local chapters that would be a really important resource for you in having some support as your friend's caregiver.
Personality and behavioral changes are really common after stroke. It sounds like your friend may also have some new issues with attention, particularly perseveration or the tendency to "get stuck" on a thought or action and having trouble shifting to think about or do something else. It might help to just repeat to yourself that those comments aren't really about you, they're a sign of the injury and the fact that it's healing.
What might help would be to talk about this with him in a moment when he's not talking about your faults. Mention that you notice that you are both ending up talking about the same issues over and over again without a resolution. Let him know that this is exhausting, and for the time being you need a system to let these topics go, then agree on a signal you can use to ask for a "time out" to leave the room and take a break when these topics come up. Your disengaging and changing the environment may be enough to get him to move on to something else. It will also allow you a well-deserved break.
Is your friend getting any kind of rehabilitation? If so, you could also ask the social worker or speech/langauge pathologist or other therapists who are working with him to help come up with some strategies you guys can use at home to work around these episodes.
Finally, do you have any other support? Are you able to get out and do little things to take care of yourself? It's so important that you do have that. Caregiving is hard work on the best days and really hard when the person you are caring for is having these kinds of changes in behavior.
Consider yourself the recipient of hundreds of gold stars from me. You are a wonderful and caring friend.
posted by goggie at 12:45 PM on August 2, 2013 [2 favorites]
Personality and behavioral changes are really common after stroke. It sounds like your friend may also have some new issues with attention, particularly perseveration or the tendency to "get stuck" on a thought or action and having trouble shifting to think about or do something else. It might help to just repeat to yourself that those comments aren't really about you, they're a sign of the injury and the fact that it's healing.
What might help would be to talk about this with him in a moment when he's not talking about your faults. Mention that you notice that you are both ending up talking about the same issues over and over again without a resolution. Let him know that this is exhausting, and for the time being you need a system to let these topics go, then agree on a signal you can use to ask for a "time out" to leave the room and take a break when these topics come up. Your disengaging and changing the environment may be enough to get him to move on to something else. It will also allow you a well-deserved break.
Is your friend getting any kind of rehabilitation? If so, you could also ask the social worker or speech/langauge pathologist or other therapists who are working with him to help come up with some strategies you guys can use at home to work around these episodes.
Finally, do you have any other support? Are you able to get out and do little things to take care of yourself? It's so important that you do have that. Caregiving is hard work on the best days and really hard when the person you are caring for is having these kinds of changes in behavior.
Consider yourself the recipient of hundreds of gold stars from me. You are a wonderful and caring friend.
posted by goggie at 12:45 PM on August 2, 2013 [2 favorites]
Depression is an important sequelae of strokes. It's quite understandable, given that people's level of functioning often changes post-stroke and that things that used to be easy can become quite hard. It's very common that depressed people can be hard/negative on caretakers and friends. He should certainly get assessed for depression.
You should also consider connecting with support organizations for family and friends and caregivers of people with chronic conditions. There are many resources out there - if you google things like "care for caregivers" or "family support after a stroke" you'll find lots of helpful resources. If it is workable for you, please consider visiting a support group - you'll find lots of people who have struggled with the same issues and lots of good practical suggestions for things you can do.
posted by jasper411 at 1:00 PM on August 2, 2013
You should also consider connecting with support organizations for family and friends and caregivers of people with chronic conditions. There are many resources out there - if you google things like "care for caregivers" or "family support after a stroke" you'll find lots of helpful resources. If it is workable for you, please consider visiting a support group - you'll find lots of people who have struggled with the same issues and lots of good practical suggestions for things you can do.
posted by jasper411 at 1:00 PM on August 2, 2013
No to having to have dealt with stroke, but i am on a little kick of reading Oliver Sacks books and he has story after story of brain injury causing personality, perceptual, motor, reasoning, and language skills.
The brain and its intact structures run our bodies. Bump it, with mechanical, hydraulic, chemical or biological insults and who the hell knows what you'll get?
I'd expect some permanent changes, ranging from slight to severe or at least, I don't think I'd be surprised.
Good luck. You deserve a gold star. Sounds like you are a prince!
posted by FauxScot at 1:07 PM on August 2, 2013
The brain and its intact structures run our bodies. Bump it, with mechanical, hydraulic, chemical or biological insults and who the hell knows what you'll get?
I'd expect some permanent changes, ranging from slight to severe or at least, I don't think I'd be surprised.
Good luck. You deserve a gold star. Sounds like you are a prince!
posted by FauxScot at 1:07 PM on August 2, 2013
Response by poster: Great suggestions/comments -- thank you all.
He and I moved to a new city and state a little over a year ago, so we are pretty scarce in the "support system" department, and it's showing. if this had happened in other places, we'd each have plenty of people around to pitch in. It's unfortunate timing. I had a gchat rant with a friend this morning, and then decided to post here, which kind of feels sad, in that i'm reaching out to the virtual world of strangers for support, lol. (and i'm grateful for it)
you need a system to let these topics go, then agree on a signal you can use to ask for a "time out" to leave the room and take a break
That's interesting. he suggested that one time, when he could sense I was out of energy on a specific topic.
posted by MoxieProxy at 1:11 PM on August 2, 2013
He and I moved to a new city and state a little over a year ago, so we are pretty scarce in the "support system" department, and it's showing. if this had happened in other places, we'd each have plenty of people around to pitch in. It's unfortunate timing. I had a gchat rant with a friend this morning, and then decided to post here, which kind of feels sad, in that i'm reaching out to the virtual world of strangers for support, lol. (and i'm grateful for it)
you need a system to let these topics go, then agree on a signal you can use to ask for a "time out" to leave the room and take a break
That's interesting. he suggested that one time, when he could sense I was out of energy on a specific topic.
posted by MoxieProxy at 1:11 PM on August 2, 2013
Response by poster: I have to confess, I've not been the best roommate. His complaints are valid. I don't really deserve the gold star, in fact I *do* deserve his criticism, but just not right now, not to this degree, and NOT on a constant loop, you know?
okay, I'll stop. I love this guy so much, and it helps to vent here.
Thanks again.
posted by MoxieProxy at 1:17 PM on August 2, 2013
okay, I'll stop. I love this guy so much, and it helps to vent here.
Thanks again.
posted by MoxieProxy at 1:17 PM on August 2, 2013
Perseveration and persecution delusions are common with brain injury.
You're taking care of him during a medical crisis, you don't have to be a perfect roommate.
posted by Lyn Never at 1:29 PM on August 2, 2013 [1 favorite]
You're taking care of him during a medical crisis, you don't have to be a perfect roommate.
posted by Lyn Never at 1:29 PM on August 2, 2013 [1 favorite]
I imagine you find yourself walking on eggshells a lot, don't you?
Listen no one is a saint, and it's okay to be human. I know you feel like you shouldn't snap at your friend who has gone through so much, but you know, you've gone through it with him, and he may not even realize how irritable he's being. Health issues bring out the worst in all of us. Your friend is very likely depressed, which is common with chronic health issues.what's more, you are at risk for depression, too. Reminding him that you are both in the same boat and could be commiserating with each other rather than bumping heads (okay that's a bad metaphor given the situation but you know what I mean) might help. Everyone needs to vent, and being a caretaker is hard work.
Speaking of which, maybe his short-temperedness and introspection mean it is time to back off just a bit with the caretaking. Have his doctors given you any guidance on how independent he will likely be? Will he require longterm care or if this is a temporary gig? Is he always going to need help getting by?
Whatever the prognosis, make sure you have regular, pre-scheduled downtime. You need this for the sake of your own health. Have someone be your backup, at least once a week and preferably more often than that, so you can go off and do your own thing without having to fret about your friend's status. Going to work, by the way, does not qualify as downtime!. You need free time, so you can relax.
Don't be surprised if you find yourself engaging in more mindless or frivolous pursuits during your downtime, either. I personally know two men who took care of their spouses with Alzheimer's. of course the families helped as much as they could, but still, when their wives passed on, both of these men just wanted to check out for a while and do nothing. They couldn't handle any more responsibilities, after having been responsible for So. Much.
One of the men went and lived at a fish camp, pretty much just fishing, eating, sleeping and communing with nature for nearly a year. Eat, sleep, fish, watch the sunset--that's the only schedule he felt up to.
The other moved out of the four bedroom house with the huge yard he and his wife had shared for nearly forty years and into a one bedroom apartment. Maintaining a home was too much, cooking his meals was too much. Even selling his house was a hassle he didn't want to deal with; he would gladly have just walked away and left all the furniture and antiques (and memories) behind him at that point. This was my FIL, and we ended up buying the house so he could walk away from the reverse mortgage he'd taken out (for his wife's medical bills), and renovating the house). Now he is quite content in his retirement community, with housekeeping, cafeterias, and weekly card games.
Again, caretaking is hard work. Please take care of yourself, too, and it will be easier to be what your friend needs you to be, too. Put on your own oxygen mask first, and all that. It's corny, but it's true.
posted by misha at 1:32 PM on August 2, 2013 [4 favorites]
Listen no one is a saint, and it's okay to be human. I know you feel like you shouldn't snap at your friend who has gone through so much, but you know, you've gone through it with him, and he may not even realize how irritable he's being. Health issues bring out the worst in all of us. Your friend is very likely depressed, which is common with chronic health issues.what's more, you are at risk for depression, too. Reminding him that you are both in the same boat and could be commiserating with each other rather than bumping heads (okay that's a bad metaphor given the situation but you know what I mean) might help. Everyone needs to vent, and being a caretaker is hard work.
Speaking of which, maybe his short-temperedness and introspection mean it is time to back off just a bit with the caretaking. Have his doctors given you any guidance on how independent he will likely be? Will he require longterm care or if this is a temporary gig? Is he always going to need help getting by?
Whatever the prognosis, make sure you have regular, pre-scheduled downtime. You need this for the sake of your own health. Have someone be your backup, at least once a week and preferably more often than that, so you can go off and do your own thing without having to fret about your friend's status. Going to work, by the way, does not qualify as downtime!. You need free time, so you can relax.
Don't be surprised if you find yourself engaging in more mindless or frivolous pursuits during your downtime, either. I personally know two men who took care of their spouses with Alzheimer's. of course the families helped as much as they could, but still, when their wives passed on, both of these men just wanted to check out for a while and do nothing. They couldn't handle any more responsibilities, after having been responsible for So. Much.
One of the men went and lived at a fish camp, pretty much just fishing, eating, sleeping and communing with nature for nearly a year. Eat, sleep, fish, watch the sunset--that's the only schedule he felt up to.
The other moved out of the four bedroom house with the huge yard he and his wife had shared for nearly forty years and into a one bedroom apartment. Maintaining a home was too much, cooking his meals was too much. Even selling his house was a hassle he didn't want to deal with; he would gladly have just walked away and left all the furniture and antiques (and memories) behind him at that point. This was my FIL, and we ended up buying the house so he could walk away from the reverse mortgage he'd taken out (for his wife's medical bills), and renovating the house). Now he is quite content in his retirement community, with housekeeping, cafeterias, and weekly card games.
Again, caretaking is hard work. Please take care of yourself, too, and it will be easier to be what your friend needs you to be, too. Put on your own oxygen mask first, and all that. It's corny, but it's true.
posted by misha at 1:32 PM on August 2, 2013 [4 favorites]
You've been thrust into a caregiver role and it sounds like you've done pretty well, even though you've found it stressful. Talk to your friend and ask that he cut you some slack for a while since you've had to use so much energy taking care of what he needs.
When someone has a major health crisis, I think it's normal and kind of understandable for them to feel that they should be put first and whatever bothers them is important but it's a sure way to make the person helping you feel unappreciated.
Maybe you could have a once a week talk about major things that are a problem and how to fix them and agree to let the smaller stuff go for now. It's important not to let it be a blame session, no using anyone for a verbal punching bag. The most helpful thing I've learned about getting along with people is to let go as much as you can about who is right or wrong and instead look at something as a problem that needs a solution you both can agree on.
It's funny you brought up deserving a gold star. That's an inside joke around here. My Grandma was really smart about saying how wonderful I was when I helped her, how she didn't know what she'd do without me and it totally worked. When you feel like you're appreciated, you're a lot more likely to help someone. Now when someone does something that's drudge work or gets a lot done, I tell them they get a gold star or sometimes two gold stars if it's a big thing. People have started doing it back to me too. It helps.
Ask your friend to tell you you're doing good when you are. It feels weird to ask but it makes you feel appreciated and I think it would help your friend might realize how much more you're doing. Tell him "gold star" when he does something that needs done. If it makes him feel good, he'll understand that it'd make you feel better too. By the way, "Three Gold Stars" for taking care of your friend after his stroke. You deserve them!
posted by stray thoughts at 2:01 PM on August 2, 2013
When someone has a major health crisis, I think it's normal and kind of understandable for them to feel that they should be put first and whatever bothers them is important but it's a sure way to make the person helping you feel unappreciated.
Maybe you could have a once a week talk about major things that are a problem and how to fix them and agree to let the smaller stuff go for now. It's important not to let it be a blame session, no using anyone for a verbal punching bag. The most helpful thing I've learned about getting along with people is to let go as much as you can about who is right or wrong and instead look at something as a problem that needs a solution you both can agree on.
It's funny you brought up deserving a gold star. That's an inside joke around here. My Grandma was really smart about saying how wonderful I was when I helped her, how she didn't know what she'd do without me and it totally worked. When you feel like you're appreciated, you're a lot more likely to help someone. Now when someone does something that's drudge work or gets a lot done, I tell them they get a gold star or sometimes two gold stars if it's a big thing. People have started doing it back to me too. It helps.
Ask your friend to tell you you're doing good when you are. It feels weird to ask but it makes you feel appreciated and I think it would help your friend might realize how much more you're doing. Tell him "gold star" when he does something that needs done. If it makes him feel good, he'll understand that it'd make you feel better too. By the way, "Three Gold Stars" for taking care of your friend after his stroke. You deserve them!
posted by stray thoughts at 2:01 PM on August 2, 2013
Response by poster: I imagine you find yourself walking on eggshells a lot, don't you?
This. This. This.
And remember: this is the one person I've never had to filter myself, censor myself, worry, feel self-conscious, nothing. We fight? We scream and yell, we apologize and hug, we're done.
But not right now.
Okay last question: would it be passive-aggressive to show him this thread?
posted by MoxieProxy at 2:37 PM on August 2, 2013
This. This. This.
And remember: this is the one person I've never had to filter myself, censor myself, worry, feel self-conscious, nothing. We fight? We scream and yell, we apologize and hug, we're done.
But not right now.
Okay last question: would it be passive-aggressive to show him this thread?
posted by MoxieProxy at 2:37 PM on August 2, 2013
Depression is an important sequelae of strokes. ... He should certainly get assessed for depression.
I can't second these sentiments hard enough. I'm not a doctor. I do know that depression is a common side-effect of strokes; if anything in that description rings bells with you, please talk with a qualified physician about getting your friend assessed.
One of the best and clearest explanations of depression I've seen is this one by Robert Sapolsky. Again, this may or may not ring bells. If it does, it might be better to say something like "You know, post-stroke, your behaviors have changed and they look like depression. Are you willing to consider that possibility, and if so, can I help you in getting that conversation started with your doctor?" than to show him this thread.
A difficult situation all around. I hope that you both find the answers that are best for you.
posted by MonkeyToes at 3:52 PM on August 2, 2013
I can't second these sentiments hard enough. I'm not a doctor. I do know that depression is a common side-effect of strokes; if anything in that description rings bells with you, please talk with a qualified physician about getting your friend assessed.
One of the best and clearest explanations of depression I've seen is this one by Robert Sapolsky. Again, this may or may not ring bells. If it does, it might be better to say something like "You know, post-stroke, your behaviors have changed and they look like depression. Are you willing to consider that possibility, and if so, can I help you in getting that conversation started with your doctor?" than to show him this thread.
A difficult situation all around. I hope that you both find the answers that are best for you.
posted by MonkeyToes at 3:52 PM on August 2, 2013
You keep saying that you haven't been the best roommate, but from where I'm standing, you're an exceptional roommate and friend. This is a major brain trauma and your friend has a lot of healing and recovery to do. He's also got the emotional and mental sequelae of the stroke to deal with and none of those things are easy. You're being a caregiver in a situation where you have very little support and you're not a spouse or family member - you're a roommate.
Are there resources available for additional care? Maybe a home healthcare aide or nurse that can come and assist with his care? The hospital social worker can help you with this. Assisting someone who has suffered a stroke is hard work that rarely lets up and you have to take care to not destroy your own life and health in doing so.
In addition to the mental/cognitive side-effects of the stroke people have referred to above, do you think another factor may be that he's unable to deal with being so dependent on you? Maybe he's embarrassed and feels like he's no longer your peer, but your burden? He may be dealing with those feelings by criticizing you, thus minimizing how much you're really doing for him.
This is a terrible thing for him to have to go through, but it doesn't give him carte blanche to be inconsiderate of your feelings and criticize you on a loop. As much as he has a capacity to do, he has to control his anger and frustration or find another avenue to vent it. It's not appropriate or fair for him to lash out at you.
posted by quince at 4:57 PM on August 2, 2013
Are there resources available for additional care? Maybe a home healthcare aide or nurse that can come and assist with his care? The hospital social worker can help you with this. Assisting someone who has suffered a stroke is hard work that rarely lets up and you have to take care to not destroy your own life and health in doing so.
In addition to the mental/cognitive side-effects of the stroke people have referred to above, do you think another factor may be that he's unable to deal with being so dependent on you? Maybe he's embarrassed and feels like he's no longer your peer, but your burden? He may be dealing with those feelings by criticizing you, thus minimizing how much you're really doing for him.
This is a terrible thing for him to have to go through, but it doesn't give him carte blanche to be inconsiderate of your feelings and criticize you on a loop. As much as he has a capacity to do, he has to control his anger and frustration or find another avenue to vent it. It's not appropriate or fair for him to lash out at you.
posted by quince at 4:57 PM on August 2, 2013
I think it would be okay to show him this thread, if you feel like that would be easiest for you. You're a wonderful friend, and you obviously want to do what's best for him, and I think that's going to come out loud and clear.
The rest of the stuff that you haven't been able to say? It might be good for him to hear that, too. It's worth a shot!
posted by misha at 7:01 PM on August 5, 2013
The rest of the stuff that you haven't been able to say? It might be good for him to hear that, too. It's worth a shot!
posted by misha at 7:01 PM on August 5, 2013
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posted by tavegyl at 11:55 AM on August 2, 2013