Welcome to the Misadventures of Widowhood blog!

In January of 2012 my soul mate of 42 years passed away after nearly 12 years of living with severe disabilities due to a stroke. I survived the first year after Don’s death doing what most widows do---trying to make sense of my world turned upside down. The pain and heartache of loss, my dark humor, my sweetest memories and, yes, even my pity parties are well documented in this blog.

Now that I’m a "seasoned widow" the focus of my writing has changed. I’m still a widow looking through that lens but I’m also a woman searching for contentment, friends and a voice in my restless world. 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. I say I just write about whatever passes through my days---the good, bad and the ugly. Comments welcome and encouraged. Let's get a dialogue going! Jean

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. ©

27 comments:

  1. Na Na Na Ah Na Nah! We are south of the snow line this time!
    I read that book a few years ago as my Father's Mother's Father, came from Guernsey Island. Good read. P.S. I DO NOT trust doctors--of any kind or specialization!! That's why I research and read everything about any of my "conditions"!

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    1. I did not know about the island of Guernsey and Jersey before reading this book. Great read so far. I love Guernsey and Jersey cows and can't believe I never knew where the breeds (probably) started. I have to research that.

      You are smart to know as much as you can about your conditions. The days of blind trust is gone. The medical community can't know everything and the smartest ones know that. We had one neurologist, though, who I'd trust to make compassion decisions but he moved his practice to Traverse City.

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  2. It snowed here last night. I went to a concert (a saxophone duo) after my band practice and when I walked outside it was snowing. It was still above freezing, so it was melting as it touched the ground which was a good thing because otherwise I would have been really angry! The weather forecast isn't any better for the next few days. Breathe in, breathe out...spring will come!

    I read that book (Guernsey) years ago. I remember that it was a good read. My husband's brother and family live on Jersey (one of the other Channel Islands) so I know a bit of the WWII history and have been there.

    Regards,
    Leze

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    1. The band of snow that is headed to Michigan is very narrow, they say. One end of town might get nothing and the other end get 12 inches. Looks like spring has to wait another week. I don't mind the snow that melts as it falls. Glad you got your concert in!

      Fiction books likes this sure can bring history alive. I guessed you'd know about the Channel Islands and I was hoping you'd comment. The book doesn't say that Jersey was also occupied but I figured it was so close it would have been, too.

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  3. I was thinking of getting a Kindle but I still like the feel of a good book. I must be getting older then I thought but many of these electronic gadgets make me feel stupid or maybe I am when it comes to them. Ha,ha,ha.

    You know Jean, when it comes to these neuro doctors, many of them see so much saddness but at the same time, they still should realize that the family is worried don't want to here the worst especially the brain is dead and they know that their love one is still there though not the best. I was told that the doctors are like that because they deal with so much sickness & death that if they show any feelings, that they might break up every time when they have to inform the famiies about the end. I say, be natural. It would help the family I say.
    A foot of snow, wow! I hope I don't get any of the white junk, especially since I'm planning on taking my Camero out soon. My baby has never been out in the snow. How silly of me.

    Have a great Wednesday Jean. See ya.


    Cruisin Paul

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    1. I prefer reading a real book over my Kindle. But the Kindle is good when you need a to take a book with you but you don't want to carry the weight/size of a book in your purse.

      I've heard that too about neuro doctors and I agree with you. When Don was five years out from his stroke I wrote a letter to the neurologist who gave him a chance at rehab telling him about Don's life, accomplishments and the Thank-God-I'm-Alive party we had at the five year mark. And he wrote back saying how much he appreciated the letter. He said it's hard for doctors who see the beginning of massive strokes but never know what they look like a few years out so they never see what determination can accomplish. I tried to write another one at the ten year mark but he had moved his practice out of town and I couldn't find him.

      I think the bulk of the snow is going to miss me. Keep you baby in the garage for a week longer. No need for her to meet snow!

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  4. hey Jean :

    not having speech is such a tough for every one involved. you are so much in mercy of every one. unless you are supported by supporting caregiver I shiver to even think where survivor would end up. right after my stroke when I was crying so hard & those indian resident doctors trying to console me saying you don't realize this clot could have gone either side of your brain & with amount of damage it caused you are lucky that it went to right side of brain & not left side of brain. ofcourse at that time no consoling workds helped I did not want any clot to go any part of my brain :). Though I always got great set of medical professionals help & support from friends & family to rebound in life again & enjoy to fullest my new normal

    Asha

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    1. Those right brain strokes can really mess with your emotions, though. I always felt sorry for the caregivers to the right brain survivors that we ran into because some of them had so much trouble understanding and thus dealing with the changing emotions in their spouses. Thankfully, you, Don, me and your husband all were able to accept the new normal and go on to get the most out of life possible. I'm so proud of you, Asha. I know it wasn't easy.

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    2. Asha, I wanted to add that something very good came out of your stroke. Your son found his life's goal and he's going to make a very compassionate doctor when he finishes his schooling. Think of how many lives he will touch.

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  5. I've tried and tried to get with my Kindle, but I've abandoned it so totally that I've had to charge the battery just from it sitting around. I have found it useful for a few particular chores, but for just reading, I'll still take a book.

    When my mom was deep into hospitals, her experience only confirmed a suspicion I'd had since working in the medical field: surgeons, and especially neurosurgeons, do fabulous work, but they often aren't the best doctors -- at least in terms of relating to patients.

    On the other hand, we once feared Mom had a brain tumor. There were MRIs, etc., and then an appointment with a big-time neurosurgeon in The Texas Medical Center. When we toted in the films and such, he looked them over, going "HmmmUmmmUhhhhh...." Then, he asked a few questions. Dizziness? Memory loss? Balance off? Etc.

    Finally, he said, "Look. You're 83. Something is going to get you, but there's no indication it's going to be a brain tumor. Go home, put these films under the bed, and get back to living. If you start having symptoms, pull these back out, and come see me again."

    It was wonderful! And she never had a problem that required going back. I'd forgotten that particular story. Thanks for bringing it back!

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    1. I much prefer reading real books, too. I like to write in the margins. But I play a few games on it every night and take it with me to offices. They'd be great for travelers, I think.

      You mom's neurosurgeon sounds like he was a common sense kind of guy. And your family trusted him enough not to keep looking for other answers that might have require treatments she didn't really need.

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  6. Full moon, huh? I'm going to have to pay attention to that. Oops! I just googled it. Full moon was last night, which may explain why I'm wide awake in the middle of the night.

    Dad had a stroke when he was about eighty. The doctor told us the same thing. My brother tried to tell him that Dad understood us, but just couldn't talk. The doctor had none of it. He said that he understood that we wanted to believe that, but it wasn't possible. He said that Dad would have to go to long-term-care and would remain there the rest of his life. The next morning, when my brother walked in the room, Dad was sitting up and shaving. Docs can be great, but they just don't know everything. The doctor actually apologized to Dad, and said he'd never been so surprised in his life. Of course, Dad's next stroke wasn't as easy to recover from.

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    1. The full moon really does keep people awake. More babies are born then and more murders happen then. It makes sense because if a full moon can effect the seas why can't it effect the fluids in our bodies?

      At least your dad's doctor had the good graces to apologize. If they'd just learn not to talk like that in front of patients it would be wonderful. For one, not being able to talk doesn't mean one can't understand!

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  7. 1. So that's why I can't sleep!!!
    2. I read that book and liked it even if now I can't remember anything about it. Maybe a re-read one day.
    3. I'm about to write a blog post on my tech difficulties and days in the Apple store with their tech "Geniuses".
    4. It's very discouraging when doctors are abrupt and uncaring. Some are. Some aren't. Most are doing their best, and second opinions and strong family advocacy are always called for! My defenses get whacked out though when I hear across the board Doctor Bashing....yep, I'm married to one. He works so hard to help his patients (many of whom have no interest in helping themselves through diet and lifestyle change and only want him to "fix" or give a pill so they can go on living in a way that makes their disease worse...but I digress). So, yes, what you describe is troubling and I'm glad people step up to advocate for their loved ones in a health care system that is far from perfect.

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  8. Chart your sleepless nights sometime and see how they line up with the moon phases.

    I didn't know your husband is a doctor! If you read my reply to Paul's comment you'll know I'm not down on all doctors. The one who gave Don a chance at rehab is a saint in my eyes. We definitely ran into more caring doctors over the years than those who need to tune up their bedside manners. His internist after the stroke was wonderful and talked directly to Don and could read his non-verbal communications really well...not common with people addressing someone in a wheelchair who can't talk.

    Can't wait to ready your 'tech' post!

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    1. Oh, I didn't interpret your post as anti doctor. I just get a little sensitive but that perspective from some people. I have run into docs that I don't like too and I have had mistakes made with my own health care. I firmly believe in finding someone who is a "good fit" and then having an advocate to help troubleshoot the system. Not always easy. We have seen the medical care system become a very difficult institution for both patients AND doctors, but it's most often the doctor who gets blamed for changes over which they have no control either and are equally frustrated. Just sayin'.

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    2. I hear ya! I just wish I was younger while these changes are going on. In time I think they will actually help the healthcare system be more efficient but maybe I'm fooling myself. LOL

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  9. With such rapid advances in knowledge, I think its best for everyone to keep an open mind. Re doctors, the doctor (an old timer) told my husband at a repeat visit that he was surprised he was still around. I found that most insensitive. Now think sometimes, it may be better than giving false hope? I don't know. BUT do not like any patient being talked over at any time - those conversations should be out of patient's sight and hearing. Hope, love and self-will are amazing.

    I find the GOP's predicament with T hilarious!!! talk about being between a hard place and rock. Uninspiring choices. I find a similar situation in many countries (well, at least the ones whose politics I follow, albeit cursorily).
    ~ Libby

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    1. Ya, it's a balancing act, I suppose, between giving false hope and too much. I'm glad I don't have to be the one to decide in situations like we've all been in. I know enough, now, not to let a doctor talk in front of patient's hearing but the down size is there's only the dog health left who'd put me in that situation.

      Easy for you to say about Trump. You don't have to live in the same country as him should he actually get elected. I may have to come visit you for four years. LOL

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    2. Ah! its just not the 'locals' that are impacted by Prez T (horrible thought!!) but the Whole of the Free World. ~ Libby

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    3. That's a thought that will keep me up at night.

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  10. Right now, I bet Tim is feeling very blessed to have you as an honorary mother. What a difference it makes in these difficult medical situations to talk with someone who truly understands and who can provide a more hopeful perspective than some bone-headed doctor. -Jean

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    1. I hope I could do that for him. He's got the biggest heart of anyone I know and will help his aunt a great deal. When Don was in rehab he'd come down 3-4 times a week to cheer him on. Tim has a crazy sense of humor that makes everyone feel better when he walks into a room.

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  11. My goodness. So many replies. It took a long time scrolling down to the bottom! I love all the comments, and Tim is blessed to have you as his honorary mother. I cannot for the life of me understand why people take a doctor's word as gospel, before they have educated themselves. The patient, his/her advocate and the doctor are in partnership. All for one and one for all - no egos allowed. Tim is on a steep learning curve, and it is invaluable that you are in his corner.

    The full moon. So THAT'S why I didn't sleep well a couple nights ago. My bedroom was so bright I had to talk myself out of getting up at 3:30. Here I thought it was the contraband wine I'd drunk.

    I have two Kindles, the second generation and the latest paperwhite. I am SO IN LOVE with my paperwhite Kindle. I splurged and bought it without all the advertising, and am so glad I paid extra. I've 59 books on it, and I write notes and highlight like crazy. I think I can download the notes; I just haven't tried. Just the act of writing notes is clarifying.

    I've downloaded Audible books as well, and have a couple on my phone. I haven't learned how to play them through my car's speakers. I will try it this weekend when I drive 3 hours to visit family.

    Have a good Easter, if we don't connect before then :-)

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    1. I would not characterize myself as an honorary mother to Tim. He has plenty of stepmothers, a mother and in-law mothers in his life. He does think of Don as a father figure to him, though. And he's a great friend and is truly the person I'd pick if we could pick a son our of a catalog.

      Audible books are great for long drives. The ending of my Kindle saga might not be over yet. I tried to download another free book after the deadline and it worked! I'm going to wait a week in case there is a grace period and try again. I never got the notice on my Kindle that the update was completed, but now I'm wondering if it actually did work and I just didn't get the notice saying so.

      Full moons effect more people than they realize. We're all werewolves. LOL

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  12. Some doctors shouldn't be doctors. I don't know what they should be, but they should never interact with the public. I can see why you were so angry.

    Happy Easter to you and scritches to Levi. ☺

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    1. Thank you. Happy Easter to you, too.

      Doctors who specialize in ICU and ER should take a course on how to talk to families.

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