What helped you cope after a loved one had a stroke?
August 30, 2023 1:29 PM Subscribe
Dealing with the anxiety of loving a patient who does not want further treatment.
The stroke was "mild". 4 days in the hospital just ended. They did a CT and monitored blood pressure and heart, but did not provide results for the latter two yet. Speech was slurred and the right-side extremities are impaired. Writing is not readable. Moving around looks dangerous, there's swerving. Mental capacity was not affected. She's almost 80. Now home alone. At risk of smoking, drinking, and falls. Meds will be taken reliably, people can check in continually, but she does not want to be "supervised". Doctors have recommended rehab, but she won't go.
I'm recovering from depression/burnout and do not have a lot of resilience. How do I stay functional? How do I soothe other family members who are more vulnerable? I'm spiraling.
The stroke was "mild". 4 days in the hospital just ended. They did a CT and monitored blood pressure and heart, but did not provide results for the latter two yet. Speech was slurred and the right-side extremities are impaired. Writing is not readable. Moving around looks dangerous, there's swerving. Mental capacity was not affected. She's almost 80. Now home alone. At risk of smoking, drinking, and falls. Meds will be taken reliably, people can check in continually, but she does not want to be "supervised". Doctors have recommended rehab, but she won't go.
I'm recovering from depression/burnout and do not have a lot of resilience. How do I stay functional? How do I soothe other family members who are more vulnerable? I'm spiraling.
If you have caregiving duties, are you in a country and a job that offers family leave?
Do you live nearby or is there a travel component to this?
Do you know what is behind your person's refusal? You may find that she changes her mind about what treatments she is willing to consider, which isn't an invitation to badger her but a reminder that we all take time to adjust to things. Life in the hospital sucks and with time she may start to appreciate that staying steady on her feet could help her reduce the number of hospital days in her future. Also, physical therapy can sometimes be done via telehealth if she is technologically connected enough. I have a trainer who works with a lot of elderly, trying to keep them independent (this is not the same as rehab of course -- but it's got a family resemblance). Doing unfamiliar exercises in a familiar place may be less objectionable to her than returning to the hospital to be seen.
Fully agree with shock muppet that soothing other people is Not Your Job right now. Assuming you are next of kin, your job is (1) your person (2) yourself. Other people bring you and her the casseroles, not the other way around. Is there someone in your family who is less close, and not fragile, that you can appoint as the spreader of news, when there is news to spread, good or bad?
It's OK that you're not OK. This is an ugly thing that everyone goes through unless they die too young themselves. Depending on your age, your peers might not have experience with it yet, but they will.
posted by eirias at 3:09 PM on August 30, 2023 [1 favorite]
Do you live nearby or is there a travel component to this?
Do you know what is behind your person's refusal? You may find that she changes her mind about what treatments she is willing to consider, which isn't an invitation to badger her but a reminder that we all take time to adjust to things. Life in the hospital sucks and with time she may start to appreciate that staying steady on her feet could help her reduce the number of hospital days in her future. Also, physical therapy can sometimes be done via telehealth if she is technologically connected enough. I have a trainer who works with a lot of elderly, trying to keep them independent (this is not the same as rehab of course -- but it's got a family resemblance). Doing unfamiliar exercises in a familiar place may be less objectionable to her than returning to the hospital to be seen.
Fully agree with shock muppet that soothing other people is Not Your Job right now. Assuming you are next of kin, your job is (1) your person (2) yourself. Other people bring you and her the casseroles, not the other way around. Is there someone in your family who is less close, and not fragile, that you can appoint as the spreader of news, when there is news to spread, good or bad?
It's OK that you're not OK. This is an ugly thing that everyone goes through unless they die too young themselves. Depending on your age, your peers might not have experience with it yet, but they will.
posted by eirias at 3:09 PM on August 30, 2023 [1 favorite]
One of the things I tell people who enter situations in which a loved one does not want further care is to be clear about what you can and cannot do for someone. This should be fairly factual conversation, acknowledging the persons wants regarding their own care. This is not about changing their minds or controlling someone. This is very much this is the reality of the situation, and how is this person processing that
It's hard conversations to have. Some people have higher expectations than caregivers can offer and sometimes unrealistic expectations about their own abilities or progress without guided help. The conversation can go something like...
Loved one, I know that you really don't want to do rehab. I'm worried I can't [limitation for example be with you all the time because of my job] and won't be able to help you [ complete task like walk to the bathroom]. How do you feel about that? Do you have a plan if [consequence] happens and I'm not there? Is there [ intervention, service, realistic options*] you'd like to consider so that you can live more independently.
You can do this over and over for lots of different things.
*Some things for people going home might be be adult day programs, homemaker services, meals on wheels, nursing services like home health if applicable, in home pt/OT, and / or emergency response buttons, moving to assisted living for community based options.
I'm sorry you are going through this. Please connect to as much support as you have. There are caregiver support groups out there. Try to take breaks. Rememver to hold that this situation isn't your fault and not everything cannot be a crisis. Sometimes people will experience consequences to their decisions, and that isn't your fault.
posted by AlexiaSky at 5:52 PM on August 30, 2023 [3 favorites]
It's hard conversations to have. Some people have higher expectations than caregivers can offer and sometimes unrealistic expectations about their own abilities or progress without guided help. The conversation can go something like...
Loved one, I know that you really don't want to do rehab. I'm worried I can't [limitation for example be with you all the time because of my job] and won't be able to help you [ complete task like walk to the bathroom]. How do you feel about that? Do you have a plan if [consequence] happens and I'm not there? Is there [ intervention, service, realistic options*] you'd like to consider so that you can live more independently.
You can do this over and over for lots of different things.
*Some things for people going home might be be adult day programs, homemaker services, meals on wheels, nursing services like home health if applicable, in home pt/OT, and / or emergency response buttons, moving to assisted living for community based options.
I'm sorry you are going through this. Please connect to as much support as you have. There are caregiver support groups out there. Try to take breaks. Rememver to hold that this situation isn't your fault and not everything cannot be a crisis. Sometimes people will experience consequences to their decisions, and that isn't your fault.
posted by AlexiaSky at 5:52 PM on August 30, 2023 [3 favorites]
Use whatever coping mechanisms you have to make your life easier even if you don't consider them healthy or sustainable long term: takeout food, curling up in a ball in front of TV, massages, etc.
If you have friends, ask for help even for minor stuff, like making the phone call to make a massage appointment.
Monitor your energy and try not to go too far beyond your sustainable capacity. It feels weird to say no when you feel like you should be there, but you need to take care of yourself first.
posted by metasarah at 6:45 AM on August 31, 2023 [1 favorite]
If you have friends, ask for help even for minor stuff, like making the phone call to make a massage appointment.
Monitor your energy and try not to go too far beyond your sustainable capacity. It feels weird to say no when you feel like you should be there, but you need to take care of yourself first.
posted by metasarah at 6:45 AM on August 31, 2023 [1 favorite]
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Soothing family members might not need to be on your task list. Your person is not OK, might never be OK, and this surprising change in circumstances completely sucks. Your family members are responsible for helping themselves come to terms with this. It’s not a soothing exercise.
If you have a therapist, call them. You could use a safe space to vent, cry, set boundaries, and come up with a game plan.
posted by shock muppet at 1:45 PM on August 30, 2023 [5 favorites]