Lying Down

Sorry about the previous email.  I hit publish and didn’t mean to.  But Dean got in there at the perfect time and left a comment.  I guess your blog is doing ok when you get comments on blank posts.  Anyway, the stimulus for this post is because I just had a private yoga lesson.  Some of the meditations that I do are lying down on my back.  I was in the hospital for a month.  So for a month, I laid in a hospital bed and did NOTHING.  DOES ANYONE SEE A PROBLEM WITH THAT?  I could have utilized a significant portion of that time doing meditations and HELPED HEAL MY BRAIN.  When I type in all caps can you tell that I’m angry about something?

Categories: Brain stuff, Health, Recovery, Rehab, Stroke stuff

Tags: , ,

32 replies

  1. Couldn’t agree more. Zack was in the hospital for seven weeks. He was up about 30-45 mins a few times a week. Other than that he was only up after the doctor literally had to scold the nurses about getting him up, out of bed and into a chair. He had asked nicely numerous times and the nurses never did it. Lame-tastic. Then he was in a rehab hospital for five weeks where, at times, he had to lay in his own pee because no one came quick enough for him. And he was only up for three hours a day there then when I got him up for meals. Crazy to think how far he has come from then. He didn’t like being out of bed, though. But I agree, it should absolutely be more of a priority. Sickening to think about, really.

  2. I thought being made to lie in an ICU bed for nine days was bad enough, I can’t imagine an entire month!

    All caps = anger? Hmm, I thought it was to help those of us who read along on our phones to see your posts more easily, LOL. 😳

    • For lots of people it was a lot more than a month. And I know of someone who they put restraints on, as if she didn’t already feel trapped enough. I think I’m gonna throw up.

      • The nurses kept putting on my bed alarm. I’d tell my visitors how to turn it off so that I could sit on the edge of the bed to talk to them. The next nurse in would get pissed and put it back on. One thing I perfected in rehab was pissing off nurses. I got multiple lectures about having my visitors check me out before wheeling me outside. Right.

      • Restraints?! That’s ridiculous! Sounds more like a psych ward than Neuro.

      • I believe there were restraints. one old guy in my hall was zipped into a tent-like thing so that he couldn’t wander away. He often worked his way out (usually during the night) and he would book it down the hallway (unlike the rest of us, he could walk just fine without aid), nurses calling after him until they captured him and walked him, contrite, back to his room and zipped him in again.

  3. I still think nap time? is the appropriate response

  4. I went out of my mind those 4 weeks in rehab. There was a whiteboard in my room for my daily schedule, but it wasn’t updated until I had already left my room for my first therapy session of the day. I was kept in the dark about EVERYTHING: my daily schedule, my length of stay, milestones, prognosis, what i could do to recover. I count things , so I used to just COUNT, often to 60, trying to pass the time. I could have been trying to nurture my brain, but it just idled for 4 weeks instead. At least I didn’t watch TV – my mind was mushy enough.

  5. My entire subacute phase where the most recovery happens was wasted in an inpatient rehab hospital where I just got sicker. I can never get that time back.

  6. The sheer thought that some of you guys were able to even sit up and visit with company while you were in the hospital is slightly mind blowing and equally depressing for me. When Zack came out of the ICU and hospital he could barely sit up in a chair for longer than 5 minutes. His first goal in therapy was to be able to sit up on the raised mat unassisted. He was so dizzy, lightheaded and lacked trunk control that he would fall right over. Not to mention, he told his best friend that he needed to leave because he was talking too much, couldn’t come close to holding a conversation, and (from what one nurse told me) he would buzz the nurses every few minutes for no apparent reason while I was gone. He told me it was because they didn’t come in time…but he didn’t realize he was buzzing them every 3-5 minutes. It makes me sad because I know he was lonely. I really wanted to be there every single minute of every day, but it was scary and lonely for me to be there, and I needed to be with our 1 and a half year old as well. As time passes, and he gets better, I realize just how bad his injury was. I don’t think I had eyes to be able to see it. I think that was probably a protection thing. It is both a good thing and a bad thing.

    Can I be honest and say that it is slightly depressing to hear how quickly you all seem to have progressed in contrast to Zack…I know it was by no means quick. I also think that his injury was probably a decent deal worse than some. I guess, I don’t know. It’s hard to measure. It’s so intriguing just how individualistic brain injuries are. Sorry if this last paragraph seems ignorant or frustrates anyone. I don’t mean to be, and I worry that since I am not the one who has had the injury that I will over step some boundaries.

    • No don’t ever worry about that Brooke. What you’re doing for Zack is something very very few of us had – a loving caregiver that did a ton of research and asked a ton of questions and tried like hell to understand. Most of us did not have that and I think I speak for everyone here when I say ask and say whatever you want. It does sound like Zack had it worse, it does. 😦

      • Thank you, Amy. I appreciate your care so much. Speaking of trying to understand- the other day in church I was singing and worshipping and kinda doing my own thing. Then I looked over to zack and I saw his face, his eyes, and he just seemed so sad and in an effort to connect and be empathetic I tried to imagine how he may be feeling and dude, it nearly took me out! I had to take the reigns of my emotions. Empathy is really hard. Not as hard as having something happen to your brain, though.

  7. I went back and reread, I want to clarify…I am SO glad that many of you could do all that you could just after your stroke and so incredibly happy for the progress that has been made now. I was just being vulnerable in sharing that to compare (and I know I shouldn’t) it is hard for me to see where Zack is in contrast. I know he is early in this journey, I have a ton of hope for him, and I am his biggest cheerleader. Sorry if I came across as not feeling happy for other’s progress…that’s no the case at all.

  8. KY meditations in the hospital? I wish – but no insurance company would pay for that….
    You laid in the hospital for four weeks and did nothing? I can’t even imagine that. Could you play word games or move any of your limbs? Did you have to just lay there and watch tv? I’d have gone nuts!!!
    It’s a shame that there’s so much that doesn’t get done during the important sub-acute phase.

  9. The more I read this the more I know why I am going to school. Because there is a need! (I know I keep bringing up school … not trying to be boring but it is what I am spending HOURS DAILY thinking about or working on.) There is an expectation that we will bring one on one programming to EVERY bedridden or isolated person on a daily basis and when possible bring them to events.

    Meditation and Yoga will have places in my repertoire! It is not all about bingo.

    All personal care homes, adult day programs, rehab facilities etc. up here with 100 or more people are being required to have a certified recreation therapist on staff and written recreation & activity plans and goals are required to be in place for every person and reviewed very frequently.

  10. Right after my stroke, I spent 89 days in the hospital part of the time I was unconscious after the brain hemorhage; but as soon as I became aware, I had a lot of visitors, I immediately started planning my return to work, but I didn’t know how deficient I was until I started physical therapy. It was a great shock to me, just how big and many my deficits were, and I had absolutely no idea how long it would take just to get functional at a rudimentary level. I returned to work at 5 months post stroke, although I was physically challenged quite a bit – my walking was slow and awful looking, but the only thing my company cared about was that I could think, and write. It was very hard, but I persevered and stayed for 3 years. To this day, I don’t know how I did it, just blind determination which is part of who I am, Then I retired and came to work in the business I own with my husband. It had had a very rough go during the recession, and is now healing along with me, but it’s all slow. slow going. But we are each making progress. M

    • Your company sure wouldn’t have liked me.

    • Marta, I was OBSESSED with going back to work, and even started working remotely while I was still in rehab. I was totally incompetent, but my boss had depended on me so much pre-stroke that he wanted me back and was willing to give me a stab at it. He hated my work, but doesn’t have the strength to ever tell any employee when his/her work isn’t good enough. I was in charge though, so repeatedly demoted myself until I finally resigned. It wasn’t pretty.

      • I had quit my job 10 years ago to take care of a dying parent. When I got ill 5 years ago I was taking Web design at college in order to start a new business with my husband who also went back to college and trained as a photographer. After I got sick he pulled out of the plan. Basically he gave up on me too.
        No job to go back to .. no new business of our own. I was not going to get through any interview process in the shape I was in. I probably was fit to work at the 3 year post mark and I have been working with a reemployment service ever since.

        Not working at the time I got sick has been financially devastating. We have good public health and medical benefits so that was okay, but this left me with no other insurance, no ability to work, my pension is totally screwed now and here I am at college with a bunch of 20 year olds desperately hoping to start a new career at the age of 57 and wondering if they are going to want to hire me or the perky but ditzy 19 year old that sits behind me.

  11. I guess praying is a type of meditation. In the mornings I got up out of bed and was encouraged to go to the communal dining room. There were only 2 stroke patients in the TCU. One ended up going to a nursing home and the other came in about 3 days before I was released.

    But I was their cheerleader and they were mine. The only time I was in bed was when I took a nap or went to bed. The rest of the time I was pedal powering myself around the ward in my wheelchair to get stronger.

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