Sunday, September 9, 2018

TRY TO REMEMBER

Try to remember the kind of September
When life was slow and oh so mellow
Try to remember the kind of September
When grass was green and grain was yellow
Tom Jones, The Fantasticks

S. Lee Manning: September is a month of memories for me. I’m writing this today, on what would have been my father’s 99thbirthday if he hadn’t died of Alzheimer’s four years ago – on September 15. He loved to sing, and he’d often sing, off-key, the song that gave this post its name. Ironic, because he tried so hard to remember in those last bad eight years – although towards the end, he no longer realized that he couldn’t remember.


Still – I used to think that Alzheimer’s was painless to the patient. That you wouldn’t remember that you couldn’t remember – and it would be like a second childhood. That was before I spent the six years after my mother’s death caring for my father. He was scared. He was angry. He couldn’t focus enough to read. He couldn’t keep a plot line in mind enough to watch a movie. Going through the disease was anything but painless. For him, or for me, who loved him so very much. I watched my smart, funny father lose so much of himself – although he did retain his humor, his love for me, to the end. It was not an experience I would wish on anyone else. Not for myself. Not for my husband. Not for my kids. But I feared that I would follow in his path. His father had had it. All three of his siblings. It looked like there was a genetic component here.

So four years ago, at the end of September, after burying my father next to my mother in a Jewish graveyard in Cincinnati, my husband and I retreated to Vermont – to grieve and to heal. One morning, I found an article in The New York Times about an innovative program at Cornell Presbyterian run by a Dr. Richard Isaacson that aimed at Alzheimer’s prevention. I called the next day to make an appointment – and a few months later went in for blood work, physical testing, and cognitive testing.

So after all the testing, Dr. Isaacson worked up an individualized plan for me. It turns out I do not have the gene for Alzheimer’s – although as Dr. Isaacson said – having the gene doesn’t mean you’ll get it – not having the gene doesn’t mean you won’t get it. Dr. Isaacson estimated that one case out of three could be prevented by life style changes, one case out of three could delay the onset of the disease, but there would still be the one/third who would get it regardless. One of the scarier facts: the changes in the brain that will eventually result in Alzheimer's begin twenty or thirty years before symptoms show up.

My father developed his dementia in his mid-80s. His sister got it in her 60s. One brother, in his 70s. The other brother, close to 90. My aunt who got it at the youngest age was overweight and sedentary. My uncle who developed it in his 70s was also sedentary and had issues with alcohol. My father had been physically active, walking two miles a day, until he moved back to Cincinnati from Florida to be with my mother. The change in exercise coinciding with his mental decline could have been a coincidence – but maybe not. His diet also changed when he moved back to Cincinnati. 

Maybe what happened to my father and his family was indeed illustrative of Dr. Isaacson’s theories. The more athletic brothers managed to push the disease much later than the two siblings who were in less than ideal shape. And maybe not. Hard to know after the fact.

Still, with the fate of my father and his family in mind, I’m following the program. I’ve changed my diet to one recommended by Dr. Isaacson (he has a book detailing it), added supplements as suggested, and I exercise at least 5 days a week. I play guitar and study French, both protective activities. I try to sleep at least 71/2 hours a night – and I’ve cut back on the coffee that could affect my sleep.

I don’t know if it’s working. I’m in better shape: I’ve lost weight and I’ve developed muscles. My endurance is up. Is my brain doing any better? I still have moments when I can’t remember a famous artist or I can’t retrieve the precise word I want to use. It’s frightening. But it may be normal aging. It may not. I’m hopeful that I’ll avoid the disease – or at least delay it enough that I’ll die of something else. I'm also aware that I may not avoid the disease - and I and my family will have to deal with it yet again.

But it’s September. This September, like every September since he died, I remember my Dad – and am glad that I don’t have to try too hard to remember. Not yet. Happy 99thbirthday Daddy.




10 comments:

  1. What a wonderful tribute to your father and your family, S. Lee, that you would dive into Alzheimer's research and find Dr. Isaacson. As you know, I'm a believer -- because of you and your research. Thank you for all that and more!

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    1. Thank you, Gayle. I am still hoping that someday Alzheimer's will have a cure. In the meantime, Dr. Isaacson does offer something for us to do to fight it off.

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  2. My grandmother had some sort of dementia her last years. It started when I was a kid, living with her. The emotional trauma it inflicted as we'd get in arguments over things that she couldn't remember--and the thought frightens me that it will be my fate, every time I can't recall a word or notice some sign of aging. I'll look up Dr. Isaacson to see if there's anything more I can do.

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    1. I was 14 when my grandfather stayed with us and clearly had dementia. What a trauma. It hard enough as an adult. And boy, do I understand the fear. You can check out Isaacson's book as well. He details his whole plan.

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  3. Very nice piece about your family, S. Lee -- then in your research you discussed changes you have made. Tell us more about the recommended diet that you adopted. We all could use advice on that score, I'm sure!

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  4. It's a modified version of the Mediterranean or MINd diet - with low carbs, low sugar, heart healthy proteins. You can also get Dr. Isaacson's book for more details. (No, I'm not getting a kickback.)

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  5. What a beautiful remembrance of your father, and honest assessment of the fear of what can come. I think we all have moments of worrying about what might happen. If we let it control us, we'd be paralyzed. Still, it's so great to have proactive things one can do. I'm going to go out and get that book immediately. Thanks, S. Lee.

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  6. Your words touched me deeply. My mother had Alzheimer's. We, as a family, lived its progression with her for 13 years before she died. Now I, too, get terrified when my memory slips or I can't pull the precise word out of my mind when I need it. As an author, I can have a quality of life and still live with a variety of diseases or physical limitations if necessary. But my mind???? Thank you for sharing your family, your thoughts, your fears, and your solutions.

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  7. Very nice tribute to your dad, S. Lee.My mom has had Alzheimer's for almost seven years now. She's 100% bedridden now, including all body functions. She's receiving 24h hour care. I'm the only one in the family she recognizes, and only intermittently. She knows Andy is her son, but I think she thinks of me as a child since we believe her own mental age is 30 or so. She still thinks her parents are alive and they died 35 years ago. Sadly, she was a vibrant,passionate woman-- tho married 5 times-- very active in GMHC the gay community of New2 York-- was their first Aids buddy before aids was even known and ended up head of all buddies. Many stillcomne visit her. She has no idea who anyone is now. She doesn't even remember GMHC. All very tough of course. But our irony is-- my mom was never a particular nice woman. She had a hairpin temper and could cut you in half with her judgmental stare. Now-- she's the nicest person on the planet. All she say over and over is, "I love you." So there are benefits, even in the sad last chapter of a vibrant life. Thx for writing yours. Andy Gross

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