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.

37 Responses to “Stroke recovery a year later: Six things I’d do differently”

  1. I agree about your assessment of the US healthcare system (and I could speak at length about my dissatisfaction with it). when my dad was hospitalized for a lengthy period of time and was being seen by multiple specialists, it was a constant frustration for him to be told by one doctor that he was “good to go” but the other doctors would tell him “nope, you’re not ready to leave”. And on any given day, any one of his doctors would dismiss him, unaware that a new problem had cropped up in another area. Poor dad never had a clue who to believe, and he just wanted to go home. Horrible time all the way around. Hindsight is 20/20, but unfortunately that won’t do you any good right now. Hang in!!

    Like

    • We had this issue with mom, too — the internist never spoke to the surgeon who never spoke to the oncologist — it’s insane.

      Like

  2. Thanks for sharing the wisdom you gained from painful experience. So sorry you and your dad had to go through all this “learning the hard way”. In no way would it ever be easy, but as you have discovered, it didn’t have to be as bad as it was. I sincerely hope that the worst is over for the two of you, and if not, then you have discovered how to cope with your dad’s problems without erasing your own life. If you could be as good a caregiver for yourself as you are for your dad, I think you would be a lot better off. However, I have never had to deal with half of what you are faced with, so for all I know (not much) I might handle things much less effectively. I think you are doing a great job, considering all the obstacles around you.Your Dad is lucky to have you.

    Liked by 1 person

    • I agree with what you wrote KJ. I add Servetus you have got an excellent capacity for the analysis and being ever alert helps the understanding. I expect you not be too much longer in that mode for the foreseeable future, it could be draining, leading to burn out. So take care of yourself.

      Like

      • On the day of the first occupational therapy session I asked so many questions that the therapist asked me what I do for a living. When I told her, she was really sort of freaked out, and I said, look, I had years and years of lessons in how to observe things. It comes in handy sometimes. (Also I may personally be disinclined to turn that function off.)

        Like

        • 🙂 I feel like I’m hearing my daughter. “Don’t worry, Mom, I got this.”

          Like

        • or my son: “Mom, do you doubt my abilities?”

          Like

          • it’s not that so much. I think I normally have a reasonable self-awareness of things I can and can’t accomplish. The problem of course is that there are dozens of things one doesn’t anticipate, and I don’t have the training to know if they matter or not, and most medical people aren’t used to dealing with people like me.

            Like

            • and to dealing with people like me too. I understand.

              Liked by 1 person

              • I so often had to stress to mom’s team that I was capable of understanding anything they said to me. It was a real struggle. And G-d forbid you tell a practitioner that you read a medical journal article. I read an article about digoxin toxicity three weeks ago and called to ask the doctor a question about it in regard to dad. You’d have thought I had sprouted a third arm. And he admitted afterwards that my question was relevant.

                Like

                • C’est un remède qui sort de la nuit des temps. A la faculté, nous devions nous remémorer, entre autres, la règle des 3 R:
                  R enforce, R alentit et R égularise le coeur.
                  La dose thérapeutique est très proche de la dose toxique. Donc la surveillance des patients et le danger de surdosage sont à prendre en considération en permanence.
                  En stage, j’avais réalisé des pilules de Lancereaux , composées de poudre de Digitale, de Scille et de Scammonée. Il fallait éteindre les poudres avec du miel, puis en faire un bâton de pâte, ensuite le couper en morceaux égaux, avant de le réduire en billes rondes entre les doigts. Il fallait ensuite enduire une à une les pilules de poudre pour ne pas qu’elles collent entre elles. Séchées les pilules obtenues étaient mises en boîtes. Nostalgie de mes 20 ans!

                  Une aventure, du même style que la votre, est arrivée récemment à une de mes collègues dont la mère a une maladie rénale et pulmonaire. Le médecin a reconnu ses tords. Souvent ils ne s’investissent pas à fond quand les patients sont ignorants ou passifs…

                  Like

                  • Isn’t it the same thing that they used in Berlin Station 3 to poison the Estonian dissident? (foxglove)

                    Dad has lost a lot of weight, and one of the symptoms of digoxin overload is confusion, so I asked about that, b/c they established at his annual physical that he had quite a bit too much of it in his blood. The doctor was uncertain, but agreed that it was relevant to be asking. Then I asked about hyperkalaemia b/c dad has mild kidney disease and he said, oh, come on, you don’t know what that is, and and I said, hyper, Greek for over, Kalium, Latin name for potassium and he was totally flummoxed. I know way more Latin or Greek than the average physician, although not much for a historian.

                    Like

                    • Les prises de sang sont fondamentales aussi bien pour le potassium (kaliémie) que pour la digoxine (digoxémie) , sinon le coeur subi. C’est une histoire d’équilibre trop ou pas assez les conséquences sont néfastes. Souvent le traitement contient des diurétiques, pour éviter les oedèmes, certains sont hypo d’autre hyperkalièmant…
                      Au théâtre, Molière dénonçait le langage savant des médecins, qui gardaient ainsi les malades ignorants.
                      Les digitales dans BS ? SPLENDIDE! dommage je suis restée à la saison1…. j’en parlais déjà dans mon article sur Pilgrimage.
                      Mais il y a la digitale pourpre et la laineuse blanche les principes actifs et les concentrations n’y sont pas les mêmes…

                      Like

                    • I need herbal tea to sleep well!

                      Like

                  • I need herbal tea to sleep well!

                    Like

    • I think there may be a trap involved, in that I tend not to realize when I’m in over my head because I think, well, we can manage that. And then we can’t.

      Like

  3. I am surprised that your dad left the hospital so soon. I am not surprised about having to pay for rehab. It sounds that your dad could have used it and maybe things could have been figured out sooner with his cognitive health. I have used the MoCA but not the RBANS. I can only hope that they figure out something for both you and your dad. I will say that with what all your dad did for a job that it might be harder to detect declines with your dads cognitive health. One of the things that we where told in school is that you will love your job but not dealing with the insurance.

    Like

    • I was surprised that they discharged him so quickly, too (esp because they were not short of beds). I think they have criteria relating to Medicare or insurance or something that encourages them to discharge quickly.

      I’ve also read that people who have had higher order careers are harder to diagnose with cognitive difficulties — they hide it better and have a lot of more resources to drawn on. Honestly, it doesn’t bother me if he can’t balance his checkbook (although I admit the first time I observed him not being able to count backwards from 100 by 3s it did shock me), but I really hope we can find some way to keep him from making bad decisions.

      paperwork: I can only imagine — but we just got the bill for the bloodwork he had done last month and it is so badly organized that it took me twenty minutes to sort out.

      Like

      • My uncle can’t write a check or balance a check book. About 4 1/2 months after his stroke he when into an auto parts store to buy parts for a car he was working on, he thought the manger was shorting him his change and the only way we know this was that my oldest son worked there at the time. My son called to let me know so I called my aunt to let her know. He has become abusive to her and others. He don’t understand numbers at all and has decided that he is going to die and now he wants to sell everything. My aunt has to be there or it will go all wrong. She somewhat can get him to somewhat understand.

        Like

        • That’s really miserable. We’re not there yet. However, we’re in the “sell everything” phase and it has weird moments. Yesterday dad wanted to put a bunch of stuff out by the road. I pointed out that we had a forecast of 100% chance of rain. Well, he did it anyway and then we had to rush out there and cover it all with tarps … he would not listen.

          Like

  4. The comment about having your dad stay in the hospital longer is an important one for everyone to hear. We also learned the hard way, taking mom home after she was diagnosed with a broken pelvis. It was a miracle that none of us got hurt taking care of her. We all want to bring our parents back to their home and hospitals want beds for incoming patients, but advocate for them to stay another couple of days while the adrenaline wears off and reality sets in, then make the decisions. Thank you for sharing what you’ve learned so far, more people need to hear this more often.

    Like

    • I had an absolute line — which was that he needed to be able to handle toileting by himself. But in the end that didn’t matter because of all the bowel issues — the line that I had my own mind turned out to be meaningless. And you’re not kidding about the risk of hurting oneself. We had a moment early on where I tried to take dad to Flower’s house and he fell while he was there and I realized that short of a few mitigating factors he’d have had to stay there till the first responders got it there. I can’t dead lift 150 lbs.

      Like

  5. These are such interesting and helpful points. I wish they wouldn’t get lost here on a blog that is otherwise unrelated to healthcare topics. This could be valuable to other people who find themselves in a similar situation. And even for someone who has not had to deal with strokes, I found this a very interesting read. So, on a more personal note, I hope that you (together with GCM?) can actually make up for some of the mistakes that were made.

    Like

  6. It’s been a long, hard year for you (and for your dad). I really admire your perseverance and loyalty. I’m also amazed at the level of blogging activity that you have managed to maintain through it all. I hope that the GCM and the scheduled assessment give you some strategies and prognoses that will make a difference in your lives. Hopefully, sharing some of these points does help someone else and enable them to advocate for better care, even though I think it is really hard in the moment to try to rationally evaluate something that we are not expecting and therefore can’t ever really be prepared for.

    There are a lot of things I would do differently, too, if I could go back to my younger son’s childhood. I feel that I should have pushed harder to get assessments for him earlier. But we rely so much (too much?) on the observations of the professionals (doctors, daycare providers, counselors, resource teachers), who have the training and the wider experience to be able to make judgments and recognize signs. Or are they all just too busy? We were hampered, too, by the fact of my son being intelligent and articulate and getting reasonable marks. Similarly to your situation, should a parent know and recognize these disorders in their children? Maybe, but even someone like me who has read a lot about autism spectrum and other disorders couldn’t actually apply it when it came to my own child.

    The campaign for people to recognize and react to the symptoms of stroke by FAST (face, arms speech, time) actually does seem to have increased the knowledge of people here and hopefully that simple acronym will save some lives and some quality of life, too. And I do think that we can’t rely on the professionals to be able to give individualized attention. Maybe what is needed are patient advocates, who have no personal stake, to help navigate the system. I guess similar to your GCM, if only that were routinely offered.

    Like

    • speaking as a daycare provider, we are not allowed to diagnose. At best we can refer parents to their pediatrician if they raise concerns. That said, an observant provider will usually spot the signs because they are with the child all day and have the advantage of comparison with 15 other kids in the class. It is harder for a pediatrician, who may see the child for 10-15 minutes in an office visit.

      Liked by 2 people

      • Oh I know. It’s only that when a child is having screaming melt downs, it would be nice if the daycare providers would ask if you have considered having him assessed for autism spectrum. (This was a large provider, not home-based, and my child was with them after school and summers for many years.) They did of course mention the unusual behaviours, but as if they were something we should correct rather than something to be investigated. But I think that assessment is much more likely to be suggested for a child who is non-verbal, and it’s harder to spot in a child who presents as intelligent and articulate and even social. We were lucky in his teenage years to find a psychologist who, while documenting the ADHD that we knew was present, said her spidey sense was tingling and sent him for an ASD assessment.

        Like

      • thanks for this perspective, C.

        Like

    • This blog was the way I wrestled my way back to sanity in 2010 and I was really insistent that it was the one thing I would not give up. But it’s been a sparse year, that’s for sure.

      As a very brief answer to what you say about the situation with your son — I think sometimes family members are at an advantage in recognizing problems but often they are not. I have frequently wished that dad had an independent patient advocate, insofar if I get vocal or insistent about something, there tend ot be problems with that (practitioners see me as the problem).

      Liked by 1 person

      • I’m glad that you were able to hang on to the blogging. Sounds like the GCM is really helping — I had assumed that she was also acting as an advocate, but it sounds like she is there more to work with you and your dad, which is good too. As for families recognizing problems, yes I think it varies and even recognizing them doesn’t always give us the answers. We do need to ask lots of questions and push for answers and solutions. Even if some practitioners don’t like it.

        Like

  7. Thanks for sharing this! People in similar situations will find this very helpful.

    Liked by 1 person

  8. This has been a tough year for you! Those are some good lessons, the basic principles of which I am sure you will still be able to use in times to come as well, Trusting your instinct is one underlying lesson, I think, and always asking questions. You did good, despite the difficult situation, and you are a caring and loving daughter. Those around you may not always see that but it’s an absolute truth from where I stand. Hugs to you.

    Like

  9. Thanks for the tips. As a recent stroke caregiver, I can agree with everything you wrote.

    Like

Leave a Reply to Stephanie Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

 
%d bloggers like this: