Caregiver Education

This blog post isn’t about a caregiver learning to maneuver a wheelchair correctly or how to guard someone on the steps.  This is about something that I was never taught, my friend who’s an OT was never taught, and we both never would’ve thought of this stuff if not for me going through this hell.  I would say that for about 6 months after my stroke I absolutely HATED everyone and everything.  To say I was miserable is a HUGE, GROSS understatement.  I HATED being alive.  Now, I think I can safely say this about anyone that has just gone through something extremely traumatic and whose life has just been turned upside down and inside out.  Until those issues are addressed, you can forget about making any kind of progress in PT and OT.  I remember that an OT made a home visit about 2 months after my stroke and she said to me “pet your animals with your right hand.”  (My right side is all messed up).  That’s great advice.  Did I take it?  Hell no.  I hated her.  :)  Poor girl, I didn’t hate her because of her, I didn’t know the girl.  I just hated the world.  So if you’re a PT, an OT, or a caregiver expect this for a while.  Expect your patient/loved one to be miserable, expect massive mood swings, expect rude behavior.  I still have terrible moods but they are few and far between and I don’t think I’m rude to people, I hope I’m not.  Anyway the point of this is that your person undoubtedly has all kinds of anger and depression and whatnot.  Until those negative feelings can be released, working on yourself physically is not going to be a priority, it might not even be a goal at all.

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

Tags: , , , ,

27 replies

  1. As usual, Amy, your post is spot on. Even a year out I’m still angry I’m also working very hard on controlling my negativity. Not easy, but I agree that recovery can’t happen until the negative feelings can be released. I have been talking with a wonderful shamanic healer who has been helping me with this. She’s far better than any psychiatrist I ever saw because many of the the issues are philosophical/spiritual in nature and can’t be fixed with a pill. Perhaps this wouldn’t be as hard if I weren’t an atheist.

    • Oh my goodness, yes being an atheist would make that quite hard – but I hear ya.

      • But being an atheist should make it easier because you aren’t praying to a non-existent being that never does anything. I tipped to atheism when my parents told me, ‘God doesn’t give you anything more than you can handle’. That’s a sign of an evil god and I didn’t want anything to do with it.

    • I agree that not being angry is helpful, but…..I experienced tremendous progress in my angry state. The anger and all the emotional issues were some of last things I attacked. I wasn’t ready sooner. I felt I could not do all of it at once, so I shoved all the emotion on the back burner until my physical recovery was well underway(almost completed), and lastly took on the emotional aspects. I was never depressed though…..just mad as hell. Depression will stop any recovery in a heartbeat. Anger seemed to propel me, not that I’m recommending it. It was just too overwhelming to even think about dealing with my emotions at the time. Once I did fix the emotional stuff, I did see a boost in my recovery though. I was not religious before this( I hated religion…I was raised catholic and it has been a long road to recovery from that nonsense), but now I would consider myself more of a reformed atheist after thinking there was nothing more than this for many years. I am now spiritual, still not clear on a lot of things, but find energy to be a common denominator that is the basis of my current spirituality.

      • I was severely depressed. Severely. I’m spiritual now too, though not clear on anything.

        • Im sorry to hear about your depression. That will stop recovery like nothing else. You’re not depressed anymore, right? I’m guessing its not so much the anger holding back recovery as much as the depression. People just can’t get better when depressed. I was so scared of getting depressed, I was getting evaluated constantly….to be sure I was ok, even though I thought I was fine. I actually had a big argument with one of the nurses that tried to insist I take an antidepressant. I didn’t need it, nor did I want it…..but I was a little scared my hard head would hurt me in the long run. Nope. I hoping they didn’t know something more than I did. Nope. I was fine…thank god!

  2. I understand what you are going through. I mean who wouldn’t. But I would like to share too that I also sometimes undergo a phase like yours, hating the world and everybody. But that is not because I have experienced the same state as you are in. It is just a different kind of state. Anyway, I hope things would get better with you. 🙂

  3. Thank you for this. Zack gets crabby….understandably. Very, very understandably. But, the man amazes me. He still fights to be who he is: loving, kind, sweet, thoughtful, gentle, generous. Even as I write this I am in tears, I can’t believe how graciously he is handling this. I surely would not be as gracious. I would probably be a raging biotch who scared everyone around me because I don’t like not being able to do things on my own. Gosh, I can’t even imagine. I’ll say it for the rest of my life and never understand fully…you guys are amazing. God bless you all.

  4. To help everyone around me and me, first you have to realize this is typical of grief counseling. With a death of a loved one it usually takes a year to go through the process, but with a stroke or other devastating trauma it may take longer. You can flip flop through the stages depending on your mood and it creates the moods.

    Five stages of grief…
    1)Denial and isolation

  5. I am a raging bitch because I don’t like not being able to do things on my own. I knew I would be this way if I was ever disabled and I told my attorney that I wanted that in my living will, but he wasn’t comfortable with it so he didn’t put it in. When I was in acute care, I kept telling them I didn’t want to survive but no one listened and I ended up with neurosurgery which may or may not have saved my life. Then again maybe I ended up with neurosurgery because the surgeon (Dr. Steig at Weill Cornell in New York City)) was paid $57,000 for about an hour’s work, which I believe he screwed up but that’s another story for another time. My husband tried to tell them that I was philosophically okay with dying and that I would prefer it but nobody listened. I don’t have much hope that things will change. I need a full recovery in order to survive and the odds of that happening are slim to non-existent, so says the medical establishment. Depression is nasty, but, frankly, I think not to be depressed for me under these circumstances would be abnormal. My animals are an enormous help. As a physician, I have learned that life isn’t sacred, it is actually living that is sacred, but very few in the medical industrial complex seem to get this. Dean, I read your blog every day (right after Amy’s) because 1- you save me lots of time by putting all the papers I need to read in one place and 2- you are kind of pissed off all the time which I like.

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