Stroke recovery a year later: Six things I’d do differently

I realized recently that it’s been a year. I want to take a moment to thank everyone who’s been there all year when I haven’t always been the most response person. I appreciate every moment of your support and I don’t say that enough.

Know more about stroke symptoms ahead of time

Especially since we knew dad was at risk for stroke! I kept saying “something’s not right” because dad’s speech was wrong. Unfortunately while it was occurring we were at a party and dad had been drinking. We were also out of mobile Internet range or I might have googled for more information. If I’d been aware of some of the more unambiguous signs I might have acted more quickly and/or convinced others to support me. (As usual, I’m dealing with the gaslighting problem with my relatives all the time.) At the same time, though, the “quick guides” have very vague information that might not have been all that useful anyway. We did okay, but still we could have been at the emergency room earlier than we were if I’d been more aware, and more insistent.

Have dad stay in the hospital longer

The day of the stroke is chaotic in my memory — we were outside at a party, then in the truck, then in an emergency room, then dad was admitted to the hospital. I drove home, picked up some stuff for him, drove back to the hospital, then drove back home, and then fielded phone calls and fell asleep on the sofa. I woke up in the morning and was at the hospital by 8, but of course they start very early there, and the first question I got when I walked in was whether he’d have twenty-four-a-day supervision if they discharged him. I answered “yes” and that led to his discharge. I should have asked more questions before agreeing to that.

He did really badly want to go home. However, I didn’t have a good idea of how severe his problems were, and home was not in the least ready for him. Heavy Lifter did get into the house before we got home, move furniture, and install disabled support in a bunch of places, so that was great, but there were so many little problems that created big problems that we could have avoided with just twenty-four hours to correct them (and better information). For example: a jar of nuts on the living room end table — he was not supposed to eat them at first because of choking risk — I didn’t notice them in time and although he knew he wasn’t supposed to eat them, he was throwing them into his mouth anyway, then refused to give me the jar. That first week was especially bad and it would have saved us a lot of tears if we could have had a little more space to get the house ready and a better idea of what needed to be done.

Insist on more / better evaluation during the hospital admission

I think the hospital had decided to discharge him after twenty-four hours and they were only going through the motions in terms of initial evaluations. His observation while in the hospital was noticeably faulty. Occupational therapy observed him eat and declared that he was okay to eat without being observed, at some time before I got there. All day we were waiting on the speech therapist; they wanted to discharge him without that evaluation and that was the point at which I put my foot down — so they got her in there at 4:30 p.m. and she discovered he’d pocketed his breakfast (he had declined lunch). You’d think they’d have noticed that in the morning, rather than after the food had been in his mouth all day long. Or: it’s a general rule that they want you to have a bowel movement before you are discharged from a hospital. So far, so good — but dad’s bowels were incredibly disordered those first days and it was a source of embarrassment and distress to him. This shouldn’t have been a surprise to anyone as it’s an area frequently affected by stroke. They could have warned us but they just pushed us out the door. I got a sheet from his “case manager” with a few FAQs but I was completely under-prepared for what was coming and that was not necessary.

Book dad into residential rehab, possibly over his protests

I felt like our therapy schedule was onerous, especially given that it involved a forty-mile roundtrip each time: three kinds of therapy three times a week (at the beginning, four times for some of the therapies). He was also given exercises to do at home and we faithfully did them every day that we weren’t scheduled for an office visit, including on days when we had to be outside in incredibly hot weather. I thought this meant we were doing the most possible. However, the GCM told me that had he been sent to rehab, he’d have had all those therapies every day with a practitioner, which would have been better for him in that he would always have had the professional advice and done it all in a comfortable atmosphere. It also would have been better for our relationship in that I wouldn’t have had to transform myself (against personality and inclination) into a combination of parent and drill sergeant. This is one of the dynamics that has taken over our relationship unpleasantly — that I have to tell him to do so many things. Just avoiding that would have made our current situation so much more bearable, as it might be easier for him to tolerate instructions if he hadn’t had a whole summer of me ordering him around.

(This might not be possible for everyone — dad’s stroke was not considered severe enough for Medicare to pay for the rehab — but dad could have afforded it and we should have spent the money. We would have had to, had I not been unemployed at the time, and it turns out it might have been better for him.)

Insist on faster and more relevant cognitive assessment

Dad has good social skills and can be very charming. He’s also, on a normal day, smarter than the average bear. So the speech / cognitive therapist had seen him five times before she saw signs that necessitated his first assessments (MoCA, RBANS). It would have been helpful to have this information earlier, in that we thought for a long time that his unwillingness to comply with certain directions (e.g., not using the stairs) was the result of willfulness, when it might have been out of organic inability to comply (eventually we put up a babygate until the physical therapist cleared him to go up and down stairs on his own). A lot of unnecessary tension was created by this lack of knowledge, and I feel like I’ve been turned into his jailer in some respects. There are still some cognitive problems that we’re not clear on the cause of (mostly executive-functioning related) that we will hopefully get more information about later this summer.

But there’s a lot of anger between him and me because my assumption had been that he could comply with directions, but refused to. (All the issues around driving are a good example.) If I knew he was simply unable to comply I would not only have responded to his criticisms of me differently, but also structured our lives differently to put him out of the way of temptation, and I would feel comfortable taking those steps because I would know that a number of ordinary situations simply test him beyond his limits. As it is, I feel like I am both required to be present protect his autonomy but also assume all, or at least protect him from, all the consequences of his faulty decisions, and that’s been an unbearable situation.

The other thing was that we had no baselines for measurements on these cognitive assessments. So there were parts of them where the results alarmed me but the therapist felt they were normal. Dad was a systems analyst, he coded in three early computer languages, he studied accounting for a year, he broke down and reassembled mainframe computers, his visual-spatial perception was always off the charts. So things that the therapist was not concerned about have been ringing alarm bells for me, and we needed to address that issue earlier and differently.

Get different / more help

The GCM has been really great, in terms of understanding what’s normal but also in terms of helping me reconcile what dad’s three doctors have said about his situation. (Note to U.S. healthcare system: it’s really about time that doctors actually speak to each other.) She’s also connected me to resources I was not aware of. I’ve also had to end a few friendships — unfortunately I had two friends who felt that their solutions to dad’s problems were superior to mine, and they would not take no for an answer, and I got sick of having to justify my decisions all the time. Last summer was definitely one of those decisive moments in that regard.

~ by Servetus on June 24, 2019.