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