Evans “Buddy” King
Several months ago, I wrote a column about my wife’s battle with “Early onset dementia, Alzheimer’s type” as they like to call it.
It is a form of Alzheimer’s, which comes on its victims in their 50’s and 60’s and sometimes even earlier. That piece was mainly about the wonderful, purposeful woman, some 20 years older than Joyce, her roommate Anna, who took charge of fighting a lot of the emotional battles surrounding the nursing home experience for my wife and for me.
I could write a book about Anna who sadly passed away a couple of months ago. This piece though is about other aspects of this illness and some of its effects on the survivors.
This topic is serious, serious as a heart attack as they say. This piece is not as light-hearted as I prefer to be normally, but I think it may be valuable to share some of the personal scars left by this terrible disease.
My wife is a beautiful woman by almost anyone’s measure. My wife was a great and dedicated runner. My wife is a sweet and caring person. My wife was a gracious lady and a lively conversationalist. My wife is, my wife was. My wife was, my wife is.
This confusion of tense is part of the collateral damage of the big A. I don’t know how to phrase things. J is not gone. She is still here. But then, she isn’t really here. Do I use the present tense or the past?
When I use the past it is gut wrenching, and when I use the present, it is a mirage — a delusion, an attempt to sustain a once-shared life that is now gone. I am never sure what is now and what was then, what is left and what is gone forever.
The same goes for “we” and “us.” Which do you use? Referring to “my house,” or “my cat” or “ my anything” is like having the chilling water of reality splashed in my face. It brings on an instantaneous attitude adjustment. Instant sadness. But using “we” and “our” rings hollow in the world I am living in. It almost feels deceptive and can sound like a form of denial. It probably is.
The chief casualty in this war is the memory of the victim of course. Most dramatic, as in my wife’s case, was the dastardly attack on the mind’s ability to remember how to tell the body to perform. Joyce went, in a few short years, from a graceful, athletic lady who loved running and yoga and aerobics, to being bedfast.
For several years, she not only won her age group in the local 10K (she joked there were not a lot running at her age), but her times also would have won a couple of age groups beneath her.
She loved yoga with her friends. She loved traveling. She loved the beach. She loved gardening and even cleaning the house. She loved singing in the choir at church. She enjoyed playing the piano.
But the loss of communication between her mind and her body slowly wrenched these parts of her life from her, and eventually took away her ability to function altogether. Now, at the age where we should be enjoying retirement and travel and more family time, there is a vacuum.
The memories of the survivors are casualties too. When I try to recall times and places for Joyce and even people, she often smiles sweetly and seems at times to grasp the topic, but more (and more) often, she smiles and then shrugs her shoulders.
So while I hold on to the memories of holidays and beach trips and ball games and family events, she has little to sustain her. Memories, the fabric of our lives, have been eaten away. Memories for the survivors, while comforting, are also painful and constant reminders of what is no more.
The value of memories is lessened and diluted if they can’t be shared with the person who made them special. Not surprisingly, the Big A also brings “survivor syndrome” into the lives of the families of the victims, particularly spouses.
While not wanting to be (too) self-pitying, the writer is living proof. You are left to wonder why your mate and not you of course. And you are left to reflect on how hard it is to find someone you want to spend your life with and then how that joy and comfort can be painfully stripped away too early.
Perhaps dementia is God’s way of easing its victims into accepting the finality of earthly existence. Slowly fading away. But Early Onset, as the name suggests, comes when there is more life to live, short changes its victims and is not necessarily slow.
Hopefully, the impact may be worse on the survivor than the victim, watching the erosion of the most important relationship of your life. I prefer to think that my wife now lives in a state of blissful ignorance.
Similar to the challenge of having every day speech trigger emotional car wrecks, and dealing with survivor guilt, is trying to deal with the way others act around the victim. In my world, Joyce is still here. She almost always smiles when I arrive at the Manor, with childlike excitement at times.
She likes me to kiss her, she enjoys me holding her hand, and she tries to talk at times. She sometimes gets out a few words. But others, usually well intentioned but clueless (and whatever word is the opposite of empathetic), talk as if she is not in the room.
They ask questions or talk about her as if she isn’t there. Not true! Not to me. I like to say J still has her essence – her sweetness, her playfulness, her concern for others force their way through the clouds in her mind at times, even though without the vibrancy once there.
And then the survivor lives with the reality that the clouds get thicker every day.
Evans “Buddy” King grew up in Christiansburg and graduated from CHS in 1971. He lives in Clarksburg, West Virginia, where he practices law with the firm of Steptoe and Johnson PLLC.