“Not in Assisted Living (Yet): Dispatches from the Edge of Independence!

Welcome to my World---Woman, widow, senior citizen seeking to live out my days with a sense of whimsy as I search for inner peace and friendships. Jeez, that sounds like a profile on a dating app and I have zero interest in them, having lost my soul mate of 42 years. Life was good until it wasn't when my husband had a massive stroke and I spent the next 12 1/2 years as his caregiver. This blog has documented the pain and heartache of loss, my dark humor, my sweetest memories and, yes, even my pity parties and finally, moving past it all. And now I’m ready for a new start, in a new location---a continuum care campus in West Michigan, U.S.A. Some people say I have a quirky sense of humor that shows up from time to time in this blog. Others say I make some keen observations about life and growing older. Stick around, read a while. I'm sure we'll have things in common. Your comments are welcome and encouraged. Jean
Showing posts with label stroke survivor. Show all posts
Showing posts with label stroke survivor. Show all posts

Wednesday, March 23, 2016

Kindle, Books and Stupid Doctors



KINDLE: If you own an older Kindle you probably got the email notice about the required updates that if you don’t do them by midnight on the 22nd you will no longer be able to download books. The directions for doing the updates sounded easy enough and I followed them to the letter. Four nights in a row without success. Then I googled some troubleshooting advice and found out my 3rd generation Kindle can’t be updated with a simple sync via Wi-Fi like the email said, but supposedly there is another way. Once again I followed directions, this time to do a manual download delivered through my computer via a UBS cable and again multi tries didn’t get me anywhere. After a couple of hours of monkeying around and reading troubleshooting tips I refused to waste any more time deciding, instead, to go with Plan C. Plan C involved spending time on Amazon, downloading a bunch of free classic books----50 in all---and enough puzzles and games to keep me happy for a decade. Part II of Plan C also includes me deciding to take the plunge to buy an Apple I-Pad Air and putting a Kindle app on it. Like I need another electronic gadget to torture my patience.

BOOKS: I have a lot of trouble sleeping around the full moon. If I had any sense I’d take a sleeping pill at midnight but it usually doesn’t dawn on me that I need one until it’s too late to take an Ambien and still get up in the morning. Last night was no exception. I hung in the zone where my brain wouldn’t turn off but I wasn’t fully awake either. In my head I was busy "writing" about the lives of the people living on Guernsey Island during the WWII when it was occupied by the Germans. I’d been reading a book on that subject before I turned off the light. One of the first lines in the book was worth scribbling on a Post-It note: “Perhaps there is some sort of secret homing instinct in books that brings them to their perfect readers.” I think that homing instinct brought me The Guernsey Literary and Potato Peel Pie Society. At the last Red Hat Society tea someone had returned that borrowed book back to its owner and everyone was saying such positive things about the book. So when the owner offered it for loan again, I raised my hand. I had no idea of the topic or time frame of the story or the fact that it was written like an exchange of letters between an England author, her editor in Australia and the islanders in the Society. With a title like that I thought it would be a bit of fluffy fun. It wasn’t. Nor was it as gloomy as the topic sounds. It's a great study of characters set in the little known---at least to me---occupation of an island in the English Channel.

STUPID DOCTORS: “Gloomy” did enter my life this week though. Tim, the son-I-wish-I-had called me looking for advice. His uncle just had a massive stroke that sounds very much like the one my husband had---right side paralysis and no speech. Tim was at the hospital when a doctor came in and told his aunt (right in front of his uncle) that there was no hope for recovery, his brain is gone. The aunt said, “But he can squeeze my hand! I know he understands what I’m saying” and the doctor told her it was just instinct like when a baby holds on to your finger. Then Tim told his uncle an insider-type joke that no one outside the family would recognize as a joke and his uncle laughed. (We did that with Don, too, to test his reactions.) The doctor didn’t believe the laugh meant anything! How can doctors who spend minutes with someone presume to know better than a family member if a speechless stroke survivor is or isn’t communicating in non-verbal ways? I was told that Don had half his brain destroyed, that he’d be "nothing but a vegetable for the rest of his life." I was so angry at the neurologist who said it that I snapped back, “Half his brain is still better than most people’s whole brain!” The more Tim and I talked the madder I got to the point that I was literally shaking by the time I got off the phone. 

The sad thing is that during the twelve years following Don’s massive stroke we ran into at least a dozen others in speech classes who’d been told the same thing---people who, like Don, had proven they were anything but vegetables. Speech therapists will tell you that communication is about more than just the words that come out of our mouths and anyone who’s been married a long time can back that up. A touch, a look, body language---we read it all and it gets sharper when vocabulary is gone. To be fair, I do understand why some/many ICU doctors act that way. They see the brain scans, see only the beginnings of the stroke but they never see a scan a year later when the blood has dissipated and new neuron-paths find their way around the damaged areas. And without a family member to be a strong, hands-on advocate for a massive stroke survivor it's nearly impossible to get a quality of life back on their own. Advocacy to push for therapies and a patient with a strong will to recover are key. One without the other doesn’t work. 

Well aren’t I ending on a little Miss. Sunshine note today? I’ll try to do better next time. I've got a couple of interesting things on my day planner if the coming snow storm doesn't knock them off. ©

Friday, August 31, 2012

Keeping Busy, Keeping Sane

Oh, my God, I thought I was going to pee my pants sitting at my computer this week. I was so wrapped up in debating politics on a message board that several times I didn’t want to leave the keyboard to answer Nature’s call. I used to frequent the political message boards for a couple of hours every day before Don passed away and this is the first time since then that I’ve gotten my old fighting moxie and tolerance for the trollers back. Nothing like a national convention of politicians to draw me back into an activity I used to love. In college I was on a debating team and taking part on political message boards reminds me of those days with the added benefit of keeping the wheels in my old brain moving, like exercise to prevent Alzheimer’s from setting in. If this week is any indication, part of my pre-widowhood personality is returning.       

A couple of days ago I got a call from a woman who’d lost her husband about a year before Don passed away. Her husband and mine had a lot in common. Both had strokes in the same time frame that left them right side paralyzed and with extreme language disorders. They both worked hard at therapy and had positive attitudes. The four of us attended speech therapy classes together two days a week for several years plus we did a little socializing with the entire class of eight as well. You get to know a lot about another couple when you go through something like that and it didn’t surprise me when my friend said that she still cries almost every day. Widowhood is hard.

After that phone call I couldn’t help wondering why I’m not crying every day. At a widowhood support site I go to on occasion, other women further out than I am report the tears are still coming frequently. I decided it was partly due to the fact that I’ve been keeping myself insanity busy. Busy with downsizing Don’s stuff and daydreaming about what I want my next transformation to look like. I’ve turned my sun porch into a sort of hope chest; squirreling things in the corners that will fit the new décor of the condo I hope to buy next year. The antique gas pumps in Don’s collection are up for auction right now---the last of the big things to go---and his sign collection is gone. I did keep one sign from the bus company his father started back in the 1920’s. A beach cottage décor can always use a sign or two.

My speech class friend still has her husband’s clothing hanging in the closet. Hearing that made me so glad I bit the bullet early on and cleaned the closet out of all but a half a dozen of Don’s shirts. Maybe walking by a closet full of your deceased husband’s clothing keeps you from moving forward? I don’t know, but all widows have a hard time with closet purging. I had a hard time, that’s for sure. I blogged two entries about the process but looking back, for me, it was the right thing to do at the right time. Still, it seems to me the widows who are still crying daily after two years are the ones who haven’t dealt with their husband’s clothing. But could this be the classic question of which came first---the chicken or the egg? Do they cry daily because the clothes are keeping them struck in the beginning stages of grief or is the daily crying an indication of a deep depression that is preventing them from purging the closet?

I don’t have a good ending for this blog entry so I’ll just share the fact that my beautiful dog now has green feet. I made the mistake of taking him out to run in the back yard just after the grass had been cut. It was still wet from morning dew and it stained his white paws up high enough so it looks like he’s wearing socks. I know how to get grass stains out of clothing but I don’t know how to get it out of Schnauzers which just goes to show that no matter how old you get there is always something new to google.  ©