“When you come to a fork in the road, take it.” Yogi Berra
The summer was a long road through concerts, through visits from Sam and trips with David, through Amy moving in. It wound through medical procedures sprinkled liberally on the older tier of the family. It rolled on through private times and public times.
The road rolled on into fall. The medical matters are winding down. Symphony seasons have opened, first in Mansfield and then here in Delaware. Indianapolis and the percussion convention are just ahead, as is New York again for the orchestra conference. Halloween is just past, more holidays are in the offing.
The road indeed goes ever on, but we have come to a fork.
Over the last several months, my mother has been changing, slowly but surely. Her once frequent phone calls have now all but stopped. After a lifetime of dominating any conversation, she more often than not is quiet. When she pulls up short too many times in a conversation, stymied as to what comes next, she covers with “I’m brain dead” and makes a joke. She asks the same question within a few minutes of first asking it. And when those rare phone calls do come and she repeats the same story for the second time within minutes of the first telling, I afterwards hang up the phone quietly and just stand for a minute, gazing out into the backyard.
Some of us – “us” being me, my sister-in-law, and two of my three brothers – started comparing notes many months ago. Because Mom had major surgery earlier this summer, none of us said much more or raised the issue with Dad while they were preoccupied.
But we were watching all the same.
Recently, my youngest brother Mark and I, after weeks of comparing notes and concerns and fears, agreed it was time to say something to dad. With the backing of our spouses, we came up with a plan to meet at mom and dad’s when Mark and I could both be there.
Mark arrived first to work on his car; he phoned me to let me know he was en route. I arrived a little later to look for canning jars stored overhead in the garage. Dad, already out in the garage talking to Mark as we hoped he would be, climbed up with me to help get the jars down the stairs. After we both were back down the stairs, I asked, as casually as my suddenly uncertain voice would allow, about mom’s upcoming visit with her family physician.
Mark shot me an appreciative look as dad answered. I then asked the hitherto unasked question.
“Dad, is mom all right?”
Mark stopped working. Dad looked at me. He hesitated in replying, and I took the pause to jump.
“I’m asking because we are noticing things.”
Dad cut right to the chase, which is his style. “You mean her memory? Yes, there are problems.”
The tension sagged out of the air. We all talked then, throwing our worries and notes one by one onto a growing stack. Dad listed the changes that he lives with now, both small and big changes of which we weren’t aware. She has stopped reading books, which saddened me. She still works crossword puzzles, but more and more she asks my dad for help on the clues. Dad, a notoriously poor speller, barked a short, rueful laugh at this turn of events.
The pile of worries and observations grew larger. It was painfully clear that mom is showing increasing signs of what the medical world calls “cognitive impairment.” It was painfully obvious that dad was relieved that he didn’t have to break the news to us.
Finally someone, Dad perhaps, said the word out loud.
Mom hates that word. Mom is terrified of that word. She much prefers “dementia,” which she thinks of as a different, less severe illness than Alzheimer’s.
Dementia, Alzheimer’s, senility.
The words all mean more or less the same thing: our family is at a fork in the road. And when you come to that particular fork, you take it. You have no choice. Mom has turned down a twisty fork that goes way over that way while the rest of us are still on the other path over here. We can still see each other and talk and laugh together, but looking up ahead, we know that at some point her path will diverge more steeply from ours and while we will always be able to see her on her path, she will no longer see us on ours.
In 1994, former President Ronald Reagan released a written statement that he had been diagnosed with Alzheimer’s. He did so in the hope that others might be encouraged to seek early intervention and diagnosis, writing “I now begin the journey that will lead me into the sunset of my life.”
We are all journeying into the sunset of our lives. My dad does not pretend at 78 that his sunset is not most likely right around the corner. I know that my sunset will very likely come far earlier for me than if I had not been diagnosed with an incurable cancer.
I have had this piece written for several weeks, and delayed posting it until now. It has tugged at my conscience, it has pulled hard at my heart. My mother's cognitive impairment is a very difficult topic because it is so personal and so immediate. What finally made me decide to post it was my saying out loud, as I thought through the post for the nth time, "what is my motive?"
My motive? To know that I am not alone. To know that we are not alone.
I wrote this in mid-September and am posting it now in November. Some things are unchanged, especially mom’s continuing decline. What has changed is that we are now speaking aloud to each other about what is happening, at least to one another.
No one mentions it to mom. (For those of you who know my mother, I would ask that you not feel you need to break the news to her.) I don’t know which of us will undertake that task. Dad recently tried to and she became so distraught that he quickly backtracked and calmed her down.
It does not surprise me that he cannot bring himself to break her heart. My father has spent 59 years being protective of my mother. It seems that he is growing even more so as she slips away. He has spent his whole adult life calming her fears, giving her reassurance, being there for her.
It does not surprise me that he will go along with her on the road for as long as possible. He will make the path as smooth as possible; he will stoop to clear away any debris.
Dad will hold mom's hand for as long as he is able.
My dear friend Katrina wrote me a long letter about what we are facing, having gone through it herself in her family. It was thoughtful and heartfelt, so much so that I copied the lines and sent them on to Mark so he and his wife could read them. She closed her comments with this: Finally, enjoy your Mom as much as you can for as long as you can. There will be glimmers of gains and lots of puddles. Only God knows the timing and we all have to live with that.
Enjoy your Mom as much as you can for as long as you can.
We plan on it.
We plan on it.