How do you deal with a spouse who refuses to do therapy?

Has he given you a reason why?

He thinks what they are asking him to do is nonsense. He also has aphasia and memory loss. He gets frustrated that they keep asking him to do things that he does not remember doing. He is also not talking much because he is having a hard time getting the right words.

@tazcat Welcome to Mayo Clinic Connect. It must be heartbreaking for you that your husband had a stroke which is life threatening and now appears to not want to do the therapy to gain back some function. Are you caring for your husband at home on your own? That's a huge task as you wrote that your husband is in a hospital bed and a tilt wheelchair. Do you have any help?

Has your husband already had an evaluation with the speech-language pathologist? I ask this because the evaluation will tell the speech-language pathologist and you about his capabilities in understanding speech and expressing himself. If your husband's speech understanding (comprehension) is good then here is my suggestion.

Please try to let your husband know how much you love and care about him. You almost lost him to a stroke and you were very frightened by that prospect. You'd like him to participate in therapy (physical therapy? speech therapy? home exercises?) so he can regain as much as is possible. You want him "around" longer and you aren't ready to lose him. Four months is a short period of time since his stroke and there is still a lot of possibility to regain physical and speech function.

In a previous career I worked in speech rehab (as a speech-language pathologist) with patients with strokes. Many of my patients were not motivated to participate because they were very depressed. I would then ask for a psychiatry consult in the hope that a medication trial would be helpful for the patient. I'm wondering if your husband's refusal to do therapy is related to depression. Research and patient experiences tell us that depression is treatable so this is why I bring this up.

You have probably figured out that you cannot "make" your husband participate in therapy. It has to come from him. So, the above are a few ideas of ways you can encourage him.

Hi, @tazcat. That must be frustrating that your husband refuses to do therapy. @naturegirl5 had a lot of useful thoughts to share, so I'm glad you are in contact.

Tagging a few others on Connect who know about stroke rehab @strokesurvivordynamo @maryar @livetheday @macto @thinkitseeitdoit @sueinmn. Hoping they will have some input about their own or a loved one's experience with post-stroke therapy and how you might work with/encourage your husband given his refusal to do the therapy. @lakelifelady also may have some ideas.

tazcat, how are you feeling today about your husband's reluctance to do therapy outside of the very little he does with in-home therapists? How is the rest of caregiving going for you?

Thank you for the encouragement . Yes, I am caring for my husband at home alone. He was evaluated by a speech therapist and they really didn’t seem to click. His OT and PT were very good with him. Unfortunately , today I learned that because he has not made significant gains and insurance required significant gains, they will no longer be coming. They did leave me with ideas on how I could help him myself though. He is already on an anti depressant and has been since in patient rehabilitation and also a seizure medication that I am told also can be a mood stabilizer. The problem with that is that they also make him very tired and sleepy, that is part of why he doesn’t participate with the therapists much . They had him on over 13 medications in in patient rehab and our family DR has worked with me to reduce some of the medications and adjust dosages on others. He is awake much more often and He does much better with me when I do the exercises with him, but still is hesitant. A substitute OT suggested I try and get him into a neuro - ophthalmologist to see if his left side neglect has something to do with his vision. He can see , but it seems like his depth perception is off. So I am trying to pursue that avenue . I really appreciate your feedback and encouragement.

Hi, it is frustrating, but I do the majority of the therapy as they only come for 40 minutes each time . OT, PT and SLP come once a week . He is better with me than he is with them. I have my version of what I call “ scream therapy”……no , I don’t scream at him. I live in a slightly rural area, with quite a few farms around me. If I feel frustrated at the end of the night, after my spouse is in bed , I go out in to the corn field that backs up to our back yard ( the farmer is friendly with us and he does not mind) and scream into the field, have a little crying jag once in a while . Remind myself that I might be frustrated , confused and angry if it was me in his position. Then I go back inside take a shower and I am good. The rest of the caregiving is going pretty good. We are on a routine , stick to it most days . He seems to like knowing what he is going to be doing , even if I have to remind him . The longer we stay in the routine , the easier it gets. It’s also a bonus when he is having a good day and he remembers to tell me that “ I am the love of his life” . Thank you for your response I appreciate it.

Hi @tazcat - first off, you're doing an amazing job as a caregiver. Don't forget that your support and encouragement makes a huge difference! Plan your week so that YOU also get time. Maybe that means a coffee date with a friend, a movie, a walk with someone you plan and look forward to. It's important to build resilience into your days so you prevent feeling overwhelmed.

Have to say that some days we don't feel like doing therapy - it happens. Sounds like you've worked well with your PCP to adjust medications and improve awake-times. If your husband participates when you do the therapy with him that's a huge WIN. I'm sure it is frustrating to have a loss of paid services due to lack of progress with a therapist, perhaps there can be a reevaluation after a period of time.

For me, my family had a log book. I'd write in it daily when I completed the therapy exercises. A good friend of mine baked me delicious lemon squares. I would treat myself to a half a square twice a day when I finished my therapy exercises. Perhaps ask your husband what he might find encouraging for him to treat himself with - maybe you sit out and have a wonderful coffee on the porch, or go for a ride after therapy.

Also, are there therapy exercises you can stack with everyday routines already, so they are easier to manage broken up during the day?

You mentioned vision in a post - I did vision retraining after my stroke, and twice after concussions that have happened since my stroke. My longest stretch was 10-months of therapy. It is really valuable. I don't have any paralysis/neglect, but a year and a half after my stroke I was diagnosed with Post Trauma Vision Syndrome and the vision therapy improved things dramatically. Just 5-minutes a day (seems silly that it is so short) was all it took. Once I did 10-15 minutes on one day, and I could barely speak afterwards I was so exhausted.

Prior to the vision therapy I was tired all the time - you mention his fatigue - it was because my eyes weren't teaming properly and I had nystagmus, my poor brain was processing 2 jumpy images and converting them to an "in focus" image to tell me things were ok. It used up a lot of brain processing power and I fatigued quickly. I couldn't read a page in a book without needing a nap. I had no idea it was a vision issue. I also found out that my vision was compensating for a lot of my balance issues. Closing my eyes highlighted how much my balance and proprioception had been impacted. I saw a Neuro-Optometrist for my diagnosis and treatment sessions. I'd go once a month to see her and had daily exercises to do at home.

Something an early physiotherapist told me "be comfortable with being uncomfortable". If you keep doing the same thing, you're going to get the same outcome. To get improvement, you have to stretch outside your comfort zone with what you're doing. Gradually increase duration of exercises, graduate to harder exercises. I remember for my vestibular therapy I had to do the exercises with my eyes open, then my eyes closed, then my eyes open while standing on a 4" thick piece of foam, then eyes closed standing on the foam. If I had an exercise I was perfecting that required walking, then we'd do it eyes open, then closed, then do it walking backwards, then backwards eyes closed (VERY tough). There are always to build increased challenge into everything. All that to say, the exercises he is performing now need to change over time to become more challenging. It may mean paying for a session and asking them to provide the next 3-6 steps that he'd progress too - so you can do that progression with him week-over-week (ask if a week of exercises is enough to jump to the next step) and then when he perfects those, perhaps he can be reevaluated and show improvement and requalify for coverage.

For reference, I had a left inferior ischemic cerebellar stroke December 2015. I was 48.

Wishing your husband continued improvement and cheers to you on the great job you are doing as his coach, cheerleader and caregiver!

Sharon

Hi, thank you for your encouragement and I do appreciate all the ideas / suggestions I have been getting here. I do take time for myself because I do not want to burn out. I enjoy working out , so I do a 30 minute beach body workout every day when he is taking a nap….even when I don’t feel like it because I need it.
I am very glad that the neuro ophthalmologist worked out for you and you had improvement . I am hoping he can get similar results over time.

I like the log book idea and rewarding yourself for completing your exercise routine. We do something similar ….as he completes his tasks I save one that I can put a treat into ( like unscrewing a lid off a plastic jar) and he has to open it to get his treat. I also have a different approach to “ exercises” . We play poker or black jack to help with fine motor skills and help with recognizing numbers and suits. I “ dance “ with him to music he likes to help stretch his arm muscles , shoulder muscles , biceps and help with his hand grip. We do weights and other things, but it’s not his favorite so I try to stretch and do arm movements in ways he likes. I try to make it fun and not so much work. I try to think of fun things that will mimic the movement that therapy wants him to do.
Both the OT and PT did leave me with extra things to do as he progresses and did say that if he showed more improvement that our family Dr. could request more therapy .
I really appreciate the suggestions and the encouragement……plus it’s nice to just be able to say things out loud and have someone listen. Thank you

Hi @tazcat - it’s really difficult when we forget and it’s hard when we hear “I told you that” or “you did it yesterday, remember.”

I can’t relate to aphasia but the Aphasia Institute (link below) may be a helpful resource for him and any caregivers.

Patience is important, approach each day as a fresh start…explain that today’s exercises are XYZ - and they will help you with this-that-and the other thing. Understanding why I was doing something was very helpful.

Also there is strong research and evidence that cardiovascular exercise (even just walking) is helpful in stroke recovery. It’s helps to pump oxygenated blood to the brain. I’m sure I can find you more info if you need it.

Final note, it took me 5-years to realize that recovery is a journey and not a destination. It took a lot of the pressure off me on where I was right now.
https://www.aphasia.ca/

@tazcat it sounds like you’re doing all the right things! Your husband is very fortunate to have you on his team. I felt like a burden for a long time when I couldn’t drive. Hearing positive feedback from my family and getting encouragement every day was really helpful.

My OT had me use an app called ConstantTherapy for the cognitive stuff. You can get a free 30-day trial to try it. It was helpful for cognitive exercises and it measures improvement which I liked. I was discouraged from doing puzzles or games because there is no evidence they help with anything except getting good at the puzzle or games - I was surprised to hear that.

This is a good OT account to follow on Instagram, possibly things you can learn from and adapt.
https://www.instagram.com/poststrokeorg?igsh=bWhrMnhqcWptMTZk