Tuesday, June 19, 2012

Ten Things I've Learned (in the last three years)

  1. I've learned to ASK QUESTIONS.
    OK, I did ask questions before, but now I've taken it to a different level. A couple of years ago, one of Boo's doctors called me the Question Lady. If I don't know something, I ask. If I don't understand, I ask...and I continue asking until I understand. If I simply don't understand one person's explanation, then I ask if there's anyone else who can explain it right then. Sometimes a different explanation can make a tremendous difference. However, I have an absolute rule: Until I understand, I do not leave and I keep asking!
  2. I've learned that I am Boo's best ADVOCATE.
    Boo cannot adequately communicate in the hurried environment of a doctor's office and doesn't clearly understand his limitations. As his wife and caregiver, it is my responsibility to ensure that the doctor, nurse, therapist, etc. has a clear understanding of Boo's needs and to ensure that those needs are being met. I've learned to speak up early and often and to be insistently polite.
  3. I've learned to SYSTEMATICALLY RECORD medical information.
    I've come to depend heavily on Boo's home health notebook. In an emergency, I cannot accurately remember his blood pressure readings every fifteen minutes. So, I write them down. Emergency personnel can more easily determine the best course of action if they know what has recently taken place. Boo's primary care physician can more readily spot “hidden” issues and adjust his care accordingly when s/he reviews Boo's daily and weekly records.
  4. I've learned the importance of CONSISTENT PHYSICAL AND COGNATIVE THERAPY.
    Since Boo's strokes, he seems to lose his abilities more rapidly when he doesn't use them often. So, we have an ongoing daily therapy routine at home. Improvements come slowly. It's been over two years since his last stroke and he's just beginning to follow and participate in thirty minute conversations consistently.
    This is an ongoing process for me! One of Boo's walkers had a flaw and needed to be replaced. Contacting the medical supply center from which we purchased it was not enough. I also had to prove that this brand of walker had a particular flaw. Another way I try to be a good consumer is by investigating all forms of treatment. Just because one form of treatment may be in vogue at the moment, doesn't mean that it is the most appropriate treatment for Boo. One doctor insisted that a certain drug was the drug of choice to treat type 2 diabetes. With further questioning, he admitted that even though Boo was having some nasty side effects he wasn't familiar enough with other drugs to prescribe them. We found another doctor that day.
  6. I've learned to expect and insist on POLITENESS AND RESPECT from anyone in contact with Boo.
    Very sadly we've had too many experiences where Boo is ignored or marginalized. Even worse are the few times when he's actually been mistreated. We went to one dentist that yelled at Boo. I expect medical personnel to be respectful and polite and will promptly intervene when that isn't the case. In a public place, sometimes a little polite education is needed.
  7. I've learned to THINK OUTSIDE THE BOX.
    So many of Boo's little quirks since his strokes are due to his inability to adequately communicate that I've learned to think outside the norm. When he resisted a particular cognitive exercise, I had to examine it from all angles. Finally, I realized that it wasn't the type of exercise, but the silly, inane readings that he was supposed to remember for several hours. As soon as we substituted readings that were meaningful to him, he actively participated.
  8. I've learned to let him DO AS MUCH AS HE CAN.
    Instead of rushing through dressing, eating, etc., I've learned to let Boo take things at his own pace. If it takes him forty minutes to dress himself, then that's what it takes. If he needs external prompts to remember how to perform daily activities, then I make sure they're in place. As independent as Boo is, nothing compensates for that feeling of accomplishment.
  9. I've learned to be more PATIENT with myself and with Boo.
    This is definitely the time to let go of our perfectionist tendencies. Our home will never be as clean and decorated as I'd like. (OK, it wasn't before either.) There are so many things that I feel I should do, but simply can't right now. I can breathe. I can calm myself, do what I am able to do and leave the rest for later. Besides Boo is able to do far more when he doesn't feel pressured or rushed.
  10. I've learned to PRAY more consistently.
    Absolutely nothing accomplishes more than prayer. It is our mainstay and support. When I don't know what to do, I pray. When I've got too much to do, I pray. Even when everything is going well, I pray. I really think I accomplish far more and with greater effectiveness when my day is under girded with prayer. My focus is on what is most important instead of on minor things.
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  1. Most or all of this is applicable to my life as well... ESPECIALLY #10.

  2. This is such a helpful list! Your thoughtfulness shows through and I know you will bring hope to many who need help in similar situations.

  3. Hi - jumped here from the WWLW link up. My husband had a massive stroke at age 39 - that was 20 years ago! (Hard to believe!) He had to learn to walk, talk, function, think, etc all over again. On top of that, his throat was paralyzed for over 2 years and was fed thru a G-tube in his belly. Since that time, my Sweet Rev has developed diabetes, heart failure, as well as congestive heart failure. If you ever need to talk (vent), ask questions, anything - please contact me. My email is joyfulprayz@gmail.com.