The brain! The brain!

August 20, 2015

Dad in frame cropdThis is my father. He was…quite a character. Every day of his life he was quite a character.

I can’t say that we had a close relationship growing up–I was “yes” and he was “no.” A victim of his upbringing, and yes, I use victim purposely, he was a challenging father. But then again, I was a challenging daughter. But I shouldn’t make excuses for him. It wasn’t me at all. It really was him. But that was a long time ago.

His pediatric practice kept him busy, so busy, in fact, that he nearly always forgot about social outings he’d agreed to. After a while, my mother made him initial wedding and party invitations to prove that she’d discussed them with him. It was mildly amusing to me, because it was standard operating procedure starting, maybe, in his 40s. Just the way things were.

When he retired from his practice at age 78, I have to admit I was shocked. He loved to work and lived to work. It gave his life meaning in a way nothing else did, including his family.  He really was a good doctor and I figured he’d practice forever.

“I had to retire,” he told me, “because I began forgetting things.”  Well, ok, that happens with age, right? It’s normal, isn’t it? Or is it?

I began to notice other anomalies. His driving was super-erratic. He and my mother had an accident while taking their annual road trip to Miami. Nothing serious, but they left Dad’s Olds for repair and rented a car to complete the trip.  Again, normal aging, right? Or was it?

My mother covered for him for a very long time, but finally she expressed concern about his memory and then, made a doctor’s appointment for him. It sounds ridiculous to say I didn’t take her seriously, because I did. But not really. Does that make sense? My father was invincible. Obviously, nothing could be wrong with him. Right? He’d always been forgetful.  I can’t remember if the appointment was with his longtime internist, a peer of his, whose skills were…questionable, I always thought, or if it was with the younger doctors that saw my mother through her illness with skill and compassion. I don’t remember the outcome of that appointment at all.

Because at just about that time, my mother’s health took a serious turn and she ended up in the hospital for most of 1999.

I came back to Rochester from my home and job in Tampa, Fla.  to stay for a week or two every month so I could spend time with her. She used to say that every visit of mine was like a party; there was so little partying in her hospital room that I was glad to be of service.  Sometimes, she lay in intensive care, barely conscious. I hung over her bedrail for hours, watching her, willing her to get well.

Then, a voice from the still body in the bed:

“Carol. Go home.”  I had to laugh. She was sick of me. Or maybe I was scaring her. In any case, it was my mother, alright. I went home for the night.

Dad, modeling, Univ of Illinois at Champagne-Urbana undergrad.

Dad, modeling, Univ of Illinois at Champagne-Urbana undergrad.

Because I stayed with my father during those visits, I saw up close the severity of his memory issues. The things we thought were “dad being an asshole” were actually “dad having memory problems.”  We kids made him an appointment with a neuro-psychiatrist for 10am on December 22, 1999.

My mother died at 5am that day.

We expected her passing. I had her  medical proxy and although everyone knew how hard she’d tried to hold on to this life, it was ready to end.  The doctors had asked me to sign a DNR as things got really bad and they believed she’d leave us very soon. Months before my father had told me he believed she’d be gone before Christmas and she was. Three days before.  It was…eerie… that he knew.

And then, she was gone from this life.

Upon her death, my father was heartbroken. No one would say he’d treated her very well for most of their marriage, but relationships are complicated. I won’t pretend to understand. Well, I think I do understand but it’s too complicated for this post.

Maybe it wasn’t a good idea, but we went ahead with my father’s medical appointment a few hours later. In retrospect, perhaps we shouldn’t have. But we’d had to wait so long for that appointment with this top doc and I wanted to be there. So we kept the appointment. It’s not like things would be any different, either way. Mom would still be dead and he would still be memory-impaired.  They ran him through a series of cognitive tests, examined him, and then:

Alzheimers

I found this in a box I hadn’t opened in more than 10 years.

The fact is that he had had memory issues for a very long time at home. It’s a wonder he didn’t have them at his office earlier, but that part of it came later. I have to wonder if his forgetting social events my mother had discussed was the early warning sign of what was to come, even though he was still relatively young at the time.  While he gave his history, my sister and I added color that often conflicted with his view of things.  I was the person referenced above who saw him struggle with a map; it was on a visit to me and his problems with navigating were so out of character that I could hardly believe it.

This history probably  minimized the issues he had been having, they were quite severe and he was expert at masking them, but the diagnosis was clear enough to the physician:

20150331_104757
Probable dementia of the Alzheimer’s type.

The following morning, after we’d gotten up, my father asked me quietly, “Carol, did your mother die?”

“Yes, Dad. Yes, she did. She died yesterday morning.”

What is email

A Post-It note I found in my father’s things. It’s so endearing, I had to keep it.

My father was diagnosed on Dec. 22, 1999 and  died in May of 2008.  The neuro guy told us he would live about eight years and he was right. He spent most of that time in a memory care facility, where he declined quickly.  Always proud of his physique and fitness, he gained a tremendous amount of weight.  He cold-cocked some guy (that’s my dad!) and they put him on anti-psychotics that drained him of personality. He introduced me to his nurses as his son (my ex-husband didn’t think that was much of a mistake, either–“you’re more of a son to him than his son,” he told me) and later, Dad didn’t know me at all.

His pleading eyes on the day he died haunt me still. What was he trying to tell me?

Dad n bookI write about him a lot these days. I don’t write about the pain of seeing him turn into a stranger, although as my fingers pick at the keyboard now my eyes brim with tears.  Yes, there was pain.

When you’re the kid who lives away, you’re not expected to feel like this. It’s as if others feel you have no right to it because you opted out of the hometown life long ago.

And yet he was my father, too. That had nothing to do with where I chose to live. He was my father, too.

The year she died my mother told me I’d been his favorite. Who knew? The thought still astonishes me. Later, I realized that the issues he had with me were probably a response to the ways I was like him: fiercely independent, among other things. And maybe even a little arrogant.

Now, 15 years past his diagnosis, I find myself with the memory of a senior citizen. I forget more often. What does it mean? I wonder. Do I have it? Will I get it? Should I be tested?

I can’t read books or movies about people with dementia. I just can’t. It strikes too close to home. I’ve seen it up close and personal and it is the saddest thing ever.

There ARE some things that we can do to help retrain our failing brains. My friend, Ruth Curran, suffered a traumatic brain injury after an accident and fought her way back like many others have to. Her blog contains puzzles and activities that are brain exercises. I try to take time to do some every week, to exercise those neurons that are a little sluggish when they ping these days.  Words I lose far more frequently. Things I can’t remember.

Ruth is living proof that we can retrain our brains and I’m hoping activities like hers will stave off dementia. Not to mention my fears. I admire her tremendously.  Her blog is HERE and she recently published a book which you can buy HERE.  I highly recommend it.

Retraining the brain sounds like a good idea to me.  My father, on the other hand, did almost everything right, all the things that are recommended today. He worked out two hours a day every day for decades. He ate salmon. He engaged his brain with his hobby, which was immunology. Not kidding. That was his hobby, the stuff he read for fun.  And still, Alzheimers got him.  So who knows. If it’s meant to be, will a few pushups a day make the difference? I doubt it.

I’m now part of an Alzheimer’s study. It was a little scary to sign up for it–do I really want to know? But at some point we have to find a way to stop this and if I can help in that way, well, I have to. My father would want me to. I do it for me, but really, I do it for him.

My parents subscribed to Reader’s Digest when I was growing up, and I remember the monthly feature called My Most Unforgettable Character. Although I’ve met many unforgettable people, there’s only one unforgettable character in my life and that was my father. For good, for bad, and even with his memory problems–and mine–he was unforgettable.

 

68 comments on “The brain! The brain!
  1. Oh, Carol, this made me cry. What a beautiful tribute and a very scary subject. Thank goodness for people like Ruth who are inspiring and teaching us to do everything we can to take care of our brains.

  2. Michelle says:

    Carol…what a wonderful post. This is haunting and sad and beautifully written.

  3. There’s so much to say here. First, your touching and honest story about your Dad. It so touches me because I lost my dad at age 4. Then your brain journey. I am such a fan of Ruth Curran. I have been a caregiver for my friend who suffered a TBI 6 years ago and the journey has been enlightening for all of us, even those without brain injuries. I love Ruth’s book and recommend to everyone I can think of. Thanks for sharing. Your bravery and honesty always makes me smile. I’m so proud of you, Carol, as was your Dad, obviously.

  4. Beautiful and haunting, made me wistful for my own parents. My mother-in-law suffers with Alzheimer”s as did her father. I look at my husband and wonder. And worry.

  5. Sandy says:

    My dad passed from Alzheimer’s Disease so this hits home. What a lovely post….very touching. 🙂

  6. As I sit here reading this with my cup of coffee I just burst into tears. I’m so sorry for your loss. My mother has Dementia and it runs strong one my mother’s side – seeing what our family went through I’m worried for my children having to take care of me too soon. We seem to have a pill for everything these days, just not what we need most. ((hugs))

  7. East Coast Kid ("ECK") says:

    A touching, and heartfelt recollection of a thoughts, feelings, and memories which are sure to make anyone with a parent child relationship become emotional. Beautifully written and true to its core, fear of the unknown can be crippling but MUST be addressed. Blessings and well wishes as you embark on the journey of discovering the why’s of this terrible disease. And to end on the lightest note, good luck on those memory puzzles. 😉

  8. Thanks for sharing your dad with us. Yes, for good or bad, we take them as they are!

    • Or we lose, that’s my opinion!

      • “Or, we lose…” Exactly! I wouldn’t trade the beautiful memories I made with my father for the world. All the love, laughter, and good times we shared would have been lost if I hadn’t made a decision, as an adult daughter, to accept and love him for exactly who he was.

        Thank you for posting your wonderful story and giving all of us a peek into your tender heart.

  9. Stacey says:

    Your story hit very close to home, Carol. My grandmother (who lived with us) had Alzheimer’s. It’s a terrible disease that steals you from your loved ones a little more each day. And, based on what I saw as it progressed, it is terrifying for the afflicted patient.

  10. Robin Herman says:

    Carol, thank you for this. It’s about so much more than Alzheimer’s and resonates for me in any number of areas. Yes, one of your best.

    • Thank you, robin. I am so looking forward to seeing you next year and having the luxury of time to talk about “all things.” And you know, all my best writing has been about my parents.

  11. Ruth Curran says:

    And so it goes, doesn’t it Carol? The leg up that you have though my friend is a focus on the positive and the good that will serve you and nourish your brain with repeated baths of healing and supportive chemicals! Do it all and do it well because variety is not just the spice of life but the best medicine for your brain.

    Your dad, in the end, gave you the gift of understanding and perspective and they too are, once embraced, unforgettable.

    Staggeringly beautiful piece.

  12. Lara says:

    This is such a wonderful post and a beautiful way to celebrate your father’s life. Thank you for sharing your story with us.

  13. Mary Hill says:

    My grandmother also had Alzheimer’s Disease. She died about the same time your father did in 2008. I hd a great aunt that died from the disease too. I know how you must feel. I worry too because it runs in my family, and I have memory and focus issues. I think mine might be related to my arthritis pain, however. Your story of your love for your father is so touching. Thanks for sharing it.

  14. I can so relate – I cared for my dear aunt (like a mother to me) through her 10 years living with Alzheimers. Like you, I worry this will be my fate too. You are brave to take part in the study. When you posted the note of your father’s I remembered all the little notes like that I would find among my aunts things.
    It is a devastating illness.

  15. Sandy Nelson says:

    Carol, how can I be speechless when my heart as so much to say?

    Having a loved one with Alzheimer’s takes the family on a long ride in a torrent river. Every emotion slams the heart and mind without reprieve. My father-in-law endured Alzheimer’s for eight years. He lived with us until his safety became an issue the last few years.

    Cognitive decline impacts the entire body and everyday life. I see it in my husband. His two strokes has left him with the brain function of a 10 year old.

    Bless you, Carol, for your spunk and bravery, for doing everything you can to assist the study of Alzheimer’s. You do it for all of us!

  16. Tammy says:

    Carol, this was a wonderful post. So raw, personal and endearing. We have all had a relationship like the on you had with your dad. Difficult, but in the end, precious beyond words. Thank you for the share.

  17. Well. I’ve never been to your blog before and here I am, feeling your pain and your love for your father. With tears in my eyes too, I might add. This was so sad and lovely to read. Brain injury is close to my heart, having had an aunt who suffered one in an accident years ago (before they knew as much about them). Her decline was different, yet similar. Thank you for sharing your story. Nice to meet you.

  18. A truly unforgettable post about your unforgettable character. So much love here. And concern. I wish you well in the study (and beyond) and am so grateful Ruth’s wisdom (and amazing book) is helpful to you and so many others.

  19. Liz Mays says:

    This is so heartbreaking on many levels. You had to deal with so much hurt with both parents at the same and different times. His pleading eyes at the end just gave me tears too. 🙁

  20. Diane says:

    So touching and honest and REAL. Alzheimers is like a thief, robbing loved ones of so much, but especially of . . . themselves. Thank you for this wonderful tribute – and for the wake-up call. My mother, suffering from Parkinson’s disease had very Alzheimers-like symptoms. We need to be aware of the danger signs.

  21. Susannah Stuhl says:

    So uplifting. Must have been so difficult for you to watch his daily decline, as the main caregiver.

  22. Alana says:

    Right now, a dear relative is showing some signs of….some kind of decline. It’s subtle. Her son is in denial. I hope I am wrong. I so hope I’m wrong. Carol, what a moving tribute. Beautiful.

  23. A very raw and thoughtful piece that hits you in the heart. I think most people of a certain age will find comfort and dread in equal measure here. Must have been SO hard to write this. Thank you. The fear of Alzheimer’s has many of us in its grip, especially if, like you, we have watched a family member or friend disappear in plain sight. My 94 year old Aunt has it and is deteriorating quick quickly. My feeling is we have to go with it and give them plenty of comfort – it must be terrifying. Bless you for sharing your touching story.

  24. Carol, such a touching post. As my parents are aging, I do fear of Alzheimer’s and I’ve seen family members with this disease. It is so hard to imagine memory fading and not knowing about the past or even able to understand the future. It must have been very hard for you to write this post.

  25. This disease is such a difficult thing for everyone in the family and also for the individual. I pray everyday that a cure can be found for this and cancer.

  26. Estelle says:

    Wow Carol. You had me riveted right to the very end of this post. I’m so sorry for your mom’s passing and your dad’s slow deterioration from Alzheimers. It’s such an insidious disease. I’m glad you are in a study–it will probably bring you solace.

  27. Thanks for sharing your family’s foray into the world of dementia. To be honest, dementia is what I fear most, for me or a member of my family. I too appreciate Ruth Curran’s work. Her book is one of my favorites. Doing her brain exercises is a great way to keep your brain fresh.

  28. Janie Emaus says:

    This was a beautiful post. My father had the same condition and died at 91, three years ago.

  29. pia says:

    Carol
    First this was exceptionally beautiful. Even for you. You captured the complexity of family relationships so well. I like to think we who come from complex families have a leg up in the elderworld as we had to navigate difficult terrain from early days.

    In another life I was a geriatric social worker who specialized in dementia. I was good at it but it burnt me out and crazed me like nothing else.

    I keep up because how can I not?

    The sad truth is nobody knows anything for certain.

    I know how hard it must have been to sign up for that study. I also know how much that can help. Because all this knowledge we’re gaining—one day, I hope selfishly in the next decade or two—will be put together and maybe we will really begin to understand and with that understanding find ways to stop dementia in its tracks.

  30. This is such a striking personal account of loving someone with Alzheimer’s. It is such a devastating disease. It is an unbiased disease and you can live a healthy lifestyle and do the things thought to avoid Alzheimer’s and still be struck by it. P.S. I love the sticky note. 🙂

  31. Hi Carol,

    I appreciate you sharing your experience and at the same time it’s something I don’t like to think about. It is such a painful prospect to consider this happening to someone I love or to someone I love.

    Shellie

  32. Carol Graham says:

    Whenever I read posts like this one, I realize how blessed I am that I never had to experience this in any form. Both my parents, step-mom, and my husband’s parents were alert to the very end. My MIL died at 96 and was playing cards the night before she died – when she beat me.

    Even though you did a great job in describing it, I cannot imagine how difficult it must have been.

  33. Tara Reed says:

    Carol – You made me tear up too! I’m currently living this… my dad is 76, was a college professor and now hasn’t known us for over a year. He’s been in a memory care home for over 2 years. While I read “Still Alice” when we started getting more information about what was going on, I can’t watch the movie. My friends can’t believe it, I simply say, “I’m living it.” Thank you for this heartfelt post!

  34. Tracy S says:

    Carol, what a beautiful tribute to your Dad. It’s funny how our understanding of past memories change as we ourselves age. My father has 2 sisters who have dementia, one is still living, and I know what a difficult time he has had with watching them go through such a thing. Your bravery is honorable.

    I don’t think we can worry about if we’ll get dementia/Alzheimer’s or cancer (which runs amuck in most families), or any disease. We just need to live in the present. ???? great post! Thanks for sharing.

  35. What a beautiful essay. I find myself thinking a lot about my dad these days…of course, I have always thought about my dad. It is almost 30 years since we lost him. It kind of freaks me out that now, he and I would be contemporaries. Please keep us posted, dear friend, on your journey.

  36. Lisa Rios says:

    I just loved reading every part of this post. This is such a great tribute to your dad & honestly a touching story that brought tears. Thanks for sharing your story.

  37. Cheri says:

    Love this, dear Carol. Ditto what everyone else said!

  38. The brain. Indeed! So agonizing. To be tested or not to be tested. That is the question and for now, I’m choosing no. I admire you for taking part in a study and wish you continued strength (and stubbornness) as you make your way forward.

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