Caregivers and Research

I’ve been emailing back and forth with Brooke.  Her husband recently had a cerebellar injury and she’s asking a ton of questions.  That’s awesome.  My primary caregiver did not do an ounce of research on my behalf, no one did.  All research regarding cerebellar strokes, I researched myself.  Everything I’ve learned in the last 2 years, I learned myself, because of myself, because I found it and read about it.  No one brought anything to me and said “you should try this.”  When I fell in love with meditation, no one read about it, researched it, or learned anything about it.  That’s what you should do when someone you love is sick.  Don’t prove your love and devotion by treating the person like an invalid and doing everything under the sun for them – do that at first, but not for long.  Figure out how to get them better.

Categories: Health, Recovery, Stroke stuff

Tags: , , ,

14 replies

  1. Yes! Figure out how to encourage them to get better–but the caregivers need information. That is where your blog comes in, giving the care givers something to direct them as well as encourage them.

    Keep up the good work!

  2. Your blog is a great resource for those looking for answers. Yes, in a perfect world, it would be awesome to have the caregivers doing the research. In my case, I was a nurse and the “go to person” for everything medical in my family. I was thankful when I got home from inpatient rehab that I still remembered a lot of what I knew since I was in charge of setting up my own out pt. therapy…and all of my recovery. Peters book was like the bible to me. And another book I enjoyed Rewire your brain, Rewire your life. Both provided so much hope and helped me formulate a plan when my brain was still all messed up.

    • The world ain’t perfect, that’s for sure! I’ll have to read that book.

    • Same situation here…I was always the go-to person for medical stuff, so it was a big jump for my family that I was looking to them. My sister’s best friend was the most helpful because she’d been through this before with a family friend about ten years ago. Otherwise, yeah, it was up to me to do the research. But then, I’m also the one who researches schooling options for the kids and the best way to make compost for our garden. I guess it’s just my job in the family. Kind of sucks when the research is about my own strokes. :-b

  3. The odd thing is that I have had people tell me that I shouldn’t research. We are what you would call “church folks”. 🙂 Zack was (is) a pastor before all this happened. He was the associate pastor of worship/youth/connections at our church. He comes from a very strong Christian background. I am a Christian, I love Jesus, I believe in his healing power..but I don’t believe in being in denial. That is just going to hurt me and make me mad at God in the long run. So, I have struggled with having faith that God CAN heal Zack and he may do it miraculously quick and that he may not. Some family members are not on the same page. And it is really hard for me to hear about what they say IS going to happen. Especially because they haven’t researched…they don’t know the reality of our situation. But they don’t have to live my life. They are not the ones whose lives have been changed forever. They don’t live in my home. They get to carry on normally while we have to figure out how we are going to do life now. As care givers, we have to fight on your guys’ behalf when you can’t fight on your own. He is worth it. You are worth it.

    • Hi Brooke,
      We have a similar branch of the family. The last thing you need to hear right now is someone not dealing with the reality telling you that you should “trust God” and not do anything to help yourself. I think this is antithetical to the truth. Nowhere in the Bible does it say that we should be stupid. 🙂 There are a lot of smart women in the Bible who proactively do something to save their families. Look at Abigail, Esther, Deborah, Jael. Even the Psalm 31 woman is running a business and speaking with wisdom.

      I found a very helpful perspective.

      Hope your husband continues to recover. How long ago was his stroke?

    • Yes, denial is incredibly strong, I’m so glad you’re not denying anything!!

      • I HATE, HATE, HATE the phrase “God never gives you more than you can handle.” HATE IT!

        • Yeah. Those of us who have been given more than we can handle know how stupid that phrase is.

          • Right. That’s such a silly cliche anyway. That’s so not what God’s about. Anyway. Robin, my husband woke up one day with swelling in his brain. We waited around for about 3 weeks while doctors in our little tiny town told us it was allergies, then vertigo. (horrifying) Finally we went to Stanford and they told us it was inflammation in his cerebellum. They finally got the swelling down after a few weeks…a couple of surgeries to take out a mass in his chest they thought was causing an autoimmune response, pneumonia, bleeding into his lung, an emergency surgery, infection in his arm from a central line…etc. It was a nightmare. One thing after another. Docs still aren’t sure why he had the inflammation. The mass they took out was a rare disease that hasn’t been associated with this kind of reaction…joy! (sarcasm) He is recovering now. He has been in rehab for about 5 1/2 weeks. He couldn’t hold his head up when he got to rehab and is now almost transferring himself from wheel chair to bed and vice versa. Still lots of communication and speech issues, nystagmus, weakness, lack of coordination, etc. But he is coming along slowly but surely.

            Thanks for the links. I will check them out!

        • That from my parents probably finished tossing me to atheism.

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