Saturday, December 6, 2008

Impact of a Stroke

My grandparents on my mother's side have been there for me throughout the past decade of ups and downs. This past year especially.

My grandmother has always been a spitfire woman. My grandfather is absolutely the love of my life. At 83 and 87 years old, they celebrated their 64th (yes, sixty-fourth) wedding anniversary on November 18th. They are often up and about, still driving, and don't take more than a multivitamin. My grandfather would tell you - at his yearly checkup everything came in clear as day; cholesterol is perfect!

I love my grandparents. When I worked weekends for a few years, I called them every Sunday morning for some small talk before it got busy. Every holiday or anniversary, every birthday or every picture they sent me, I would send them a card or a thank you note. Both things I haven't been able to do in over a year - it's been too overwhelming or too much.

I am fortunate to have them close by, so when I started therapy in RI, I was leaving my mother's car at their house and my gram would pick me up at the T when I needed to drive down for a few days. Since July, I had been lucky to start seeing them a lot as I would get my attention and processing therapy or whatnot.

My grandmother has never been very tactful. She means well, but she surely lacks tact. I've had to ignore some of her comments and remind myself she means well. Such as "If you just went back to work, you wouldn't have to play all these stupid games that aren't getting you anywhere and you'd be just fine," or "you start to wonder how far 'support' goes until you're just plain babying someone..."

And it's OK, I know she just doesn't get it. I know I don't get it sometimes. I know that a lot of people just don't understand. I know there are instances where people have concussions and they are, indeed, perfectly fine. But I know more than ever, there are cases where that bump in the head isn't just a bump in the head and there are serious things wrong. I know because I'm sure I've been bumped in the head before and was fine. I know because this particular bump in my head was more serious and definitely changed my entire life and future.

Throughout all of this, accepting that she and others do not understand, I have never once wished they would. I have never wanted anyone to actually "get it," and the day I walked into the hospital and saw my grandmother absolutely beside herself because she "got it," I could only relive the dispair I had felt a year ago after my accident.



The Friday before Thanksgiving, my grandmother had a stroke. She's doing OK. She looks great - really great - fantastic actually. And she hates hearing it. As I do.

She gets it. And when she sees me when I visit, she just cries and says sorry - which causes me to cry and not be able to say anything except "it'll be OK, it comes back..." She asked me "how have you done this for a year, this is just so frustrating, how do people do this and not just want to quit?"

She can't do a lot of things she used to right now. She is beside herself as she tells doctors that she can't mechanically write, the words are just scribble - I got my love of writing from her, I got my verbose and often superfluous nature from my gram. She was going through old stories she's written - and she can read, and she's shocked she can still read when she can't write. She's also shocked she was able to do so much before. She gets it.

When I went in to visit, I brought my favorite photograph of her and my grandaddy from a few years ago to have at her bedside. I also brought some playing cards because she loves solitaire. Lastly, I brought her a 'word search' book. She loved the photograph - as it connected her to people who care about her. The cards and word finds - just made her discover some new things that are harder than they were before.

She speaks very slowly and is processing things even more slowly. On Thanksgiving, I watched as my family talked so normal to her and she pretended to listen, but her response just showed it was too fast for her to understand. I slowed my speech for her to answer her when she asked if she had just stayed at home and not gone to the hospital if she would have been worse. And she got it, she understood. She's still bright, just different. She gets it.

That day in the rehab nursing home, as the family was around she was telling us about her decision to be DNR. She was asked if she understood that it meant "do not resuscitate?" Her response was that she absolutely did and she doesn't want to live if she has another stroke. I don't think she will, most strokes that actually become a DNR decision happen one after the other, and their clots are just firing all over the place. But I don't think she'll have a life threatening one. And if another one happened, she just might become a little more disabled... this woman could probably still run circles around you and I. But the point is that the loss of who she used to be has had her thinking about dying. Her brain injury from the stroke has completely taken the life-loving spirit out of her. She gets it.

Finally, touching on personality changes that happen to those brain injured, some people, like me, get angry and resentful. However, my grandmother's clot was in the area of the brain that "controlled inhibitions." She went from being a stickler to saying outlandish, hysterical things! My father said, "Holy smokes! She is not herself, she's practically ready to run Saturday Night Live!!"

As comical as that is, it still breaks my heart. It had frustrated me that she didn't understand before, but I would go through it all again - the pain, the sleepless nights, the frustration, the anger, the loss, the fear, the unknown, the desperation, and all the struggling through this recovery - I would do it all over again if she never had to know. If she never had to really understand what I was going through I would experience it all over. Watching someone you love go through this, for me it resonates so profoundly because I've been through it. I get it.

5 comments:

Colette Amelia said...

I am so happy to find you! I am adding you on to my blog!

Anonymous said...

Oh, wow - so sorry to hear about your grandmother!

Stroke runs in my family, too, and I've had people very close to me sustain multiple ones. They have been able to come back remarkably well -- to the point where people would never be able to tell something was "off" about them.

Here are a couple of resources for you:

"Brain, Heal Thyself"
A Caregiver's New Approach to Recovery from Stroke, Aneurysm, and Traumatic Brain Injuries
by Madonna Siles and Lawrence J. Beuret, M.D.

"Brainstorming: The Serper Method for Brain Recovery, Regrowth, and Vitality"
By Lynn Lazarus Serper, Ed.D, with Dr. Dale Koppel.

A “can't put it down” read containing the inspirational story of Dr. Lynn Lazarus Serper’s recovery from a ruptured brain aneurysm that caused her to lose her ability to speak, read, write and think clearly.

You can find info at
http://www.serpermethod.com/ - Lynn Serper is in the Boston area, I believe, so if you're there, she may be able to help you directly.

If your grandmother needs to express herself through writing, but she cannot physically write, you may want to hook her up with speech-to-text software, like Dragon Naturally Speaking. I use it when my hands get tired.

Also, Norman Doidge's Book "The Brain that Changes Itself" has an account of a gentleman who suffered a severe stroke (I think when he was in his 60's) and lost a massive amount of functionality in a critical part of his brain -- they didn't realize it till after he passed, because he learned to get back ... and more... First he learned to crawl, then walk, then function. Literally. He eventually passed from a heart attack in his late 70's while he was hiking or mountain climbing.

Good luck with your grandma. And if you like, please tell her I have someone very close to me who sustained what "should" have been a totally debilitating stroke, and they are up and around and more than functional, less than 2 years later -- managing their own international business. It takes time, and it can be scary, but it can be done! Lynn Serper is living proof.

Not everyone is the same, not every recovery story is as hopeful. But stroke is NOT the end of the story!

Good luck with everything.
Cheers
BB

BrainInjuryLand said...

What a wonderful, heartfelt, and insightful post. Yes, to 'get it' we must see with new eyes, which is usually aqcuired by injury ourselves. I too would never wish this on another living soul, but am grateful there are folks out there who do understand from a deep place of knowing.

Bless your heart for your comment in my blog, thank you. I'm way behind on life as I am struggling with this latest set of circumstances. I appreciate your noting to call the BI Association and even offering what to say, that's where I get stuck a lot!

Blessings,
RH

NEdream26 said...

Thank you BB!! I appreciate your well wishes and your great resources! Thanks so much for the effort - I know I've had minimal energy for anything these days.

I also read your post from my comment - and as always loved your insight but didn't have enough energy to post anything afterwards :( Please forgive me! I have to figure out a better way to respond to things...

Thank you again!!!! Hope you're staying warm this winter :)

NEdream

NEdream26 said...

RH-
Thank you for your wonderful comments! I'm glad you stopped by again!

I know all too well that sometimes you can get halfway to doing something, but get stuck at the easiest places... I hope to hear if you make any progress with the BIA, or the appeal. I haven't called yet myself again - but eventually I'll have the energy!!

Best of luck,
NEdream