Editor’s Note: Bill Eisen has twice experienced once-in-a-lifetime loss: the death of one’s spouse to dementia. This is his story, written in his own words. The events are chronological, yet they begin with an ending, and they end with a beginning.
Have you ever watched someone die? I have. Twice now.
The first person — my wife Diane — took a long time. She was diagnosed with Alzheimer’s disease in 1998 and lived for more than five years until her brain no longer allowed her to be the smart, caring person she once was. During those five years, she stayed active, spending mornings at a day program. In the evening, we attended plays, the opera, and the public theatre. In 2000, we completed a 10K run. Five years after her diagnosis, Diane moved into an assisted living facility. We could talk and even occasionally take walks through the park, but she gradually lost the ability to do all the routine activities of daily life.
In the last few months of her life, she was dead, but still living. She continued to breathe, but essential aspects of humanness had left her. Judaism teaches that when God made man in his own image, He gave man free will. In her last months on earth, Diane no longer had that free will. She existed, but not as a human being.
Because her changes were so gradual, sadness and grief hit me gradually as well. I had already made peace with myself. I had loved her from the day we first met, and loved her until the day she died, but I was relieved. Her suffering was done. Mine was dormant.
Nine years later, life is repeating itself.
In May 2014, Yvonne, my second wife, was diagnosed with Lewy-Body dementia. For some time, our life hardly changed. In June, we spent a week in Provence. We continued to enjoy the opera in both Philadelphia and New York. We went to the Philadelphia Orchestra and the Chamber Orchestra, but by the winter of 2015, our life began to radically change.
Yvonne needed assistance in the daily activities of life, including bathing and dressing. A home health aide began staying with her three times a week when I was away. There were no satisfactory day programs. Within a month she was totally dependent on the aide or me. In late June she fell and broke her pelvis and, though she was able to walk again a month later, she used a walker or wheelchair when traveling. She had also lost her ability to understand verbal prompts, but could still understand written words. By the end of August, Yvonne was no longer communicating verbally. She either could not or would not chew foods. She maintained a blank stare while sitting in her wheelchair or on the couch.
Dementia is the cruelest disease. There is no cure, so we who have loved ones with dementia watch the deterioration that robs them of their human qualities while we’re left feeling a mixture of sadness, anger, and often depression. Human beings are different from animals because we have the innate ability to think, to feel, and to be aware of what we think and feel; to communicate and to be sociable. People with dementia lose these qualities.
Yvonne’s rapid change in less than a year threw me off balance. I was so busy trying to do so much for her that I was unable to really know my own feelings. I know that this change is not over. I love Yvonne and joyfully remember who she was. Three weeks ago, she too moved into an assisted living facility. I see her frequently, but I continue to feel sad for her and angry about this horrible disease that has stolen two people from me.
I am writing these present words, six months later. In the last two days, I have read two articles about Alzheimer’s disease: one, a nine-page documentation in the New York Times about a woman’s experiences in the early stages; the second, an article in the Philadelphia Inquirer about recent experimental work in PET scan and how it is used to determine brain function. Perhaps it is my age, personal, educational, and professional experience that makes me tired of reading these same articles. I have been looking for results for nearly 20 years and am totally frustrated by the lack of them. Yes, there has been progress, but until research can definitively tell us the root causes of the plaques, tangles, and neuron dysfunction in the brain, we will not have a cure or preventative measure.
Stop telling us stories about people with early to middle stages of dementia. Stop trying to convince us of the horrors of this disease. There are millions of us who know what they are. We see and feel them every day. Why not tell the world about late stages, when the person with the disease can no longer express how she feels? When the only persons who know what is going on are those of us whose sadness is overcome only by the belief that merely holding hands with our wives, husbands, mothers, or fathers is, hopefully, giving them some comfort. We can only guess at what they may be thinking or feeling. We continue to live with the hope that our presence does give them something.
June 7, 2016
I have read many first-hand descriptions as well as an imagined one of the symptoms of early and mid-stage dementia. But I have never read nor heard anyone describing what a person with the late stages of dementia feels or thinks. This is probably not possible because the person’s brain has lost its ability to communicate with someone else. There is such an internal disconnect that a person is unable to express his thoughts or feelings.
We observers can see the external symptoms, but we are ignorant about the emotions that may still exist within that person. What follows is an attempt to guess at what may be happening inside the brain of my wife. This first-person description is a fantasy because it is largely made up of what I hope she is feeling.
Every morning, I look forward to Bill’s arrival. When he finally comes, I try to say hello, but the only thing that comes out of my mouth is a grunt, yet I know he sees something in my eyes that says, “I am glad to see you.” It is almost time for lunch, and while Konjit feeds me, Bill sits next to me and holds my hand. This physical contact is important, because it is one of the few moments when someone about whom I care and love is actually touching me.
As each spoonful of food approaches me, I open my mouth. I don’t know what I am eating, because I don’t really have to chew it — I just swallow. When the plate is empty, Konjit offers me a glass of thickened juice. I try to hold the glass and sometimes succeed, but usually she tips it up for me to swallow. Now it is time for dessert. I can’t eat what most of the other residents have, because everyone is concerned that I might choke. So it is pudding or applesauce, or, my favorite, ice cream.
During all this time, I have been quiet, because eating takes all my energy. But now, what will we do? Bill usually asks me if I would like to go into the library and listen to music. I am no longer able to walk, so I sit in a wheel chair all day long except for during my afternoon nap. I’m not sure what he means, but he usually pushes my chair to go there. I scream at first, because it is something different. When we get to the library, the TV is usually on to some old show like Gunsmoke, or Bonanza, or Rawhide, but it doesn’t matter. Bill sits down and adjusts my wheelchair so that I am watching the television. He then turns on Pandora. My eyes seem glued to the TV set as I stare aimlessly at it. Bill usually plays music from the ’60s, probably because that is what he likes, but maybe he thinks I like it. I do.
Every once in a while, he will call out my name. I’ll turn my head and look at him with a blank expression. I know that he is trying to figure out what I am thinking, and I wish I could tell him something, but my mouth and my brain do not seem to be connected. All that comes out is a scream. I know this upsets Bill, and he tries to figure out whether I want something. I wish I could speak and make life easier for him.
While we are sitting down, some of the other residents will wander in and out of the library. One of them talks and seems to know the words of every song that Bill plays. The others are like me: no talking, or if some sound does come out of their mouths, it does not mean anything.
There are 17 people in my neighborhood, all with dementia. Some, like me, can’t talk. Some, like me, can’t walk. Some can eat without any help. Most of us need help when it is time to eat. The staff is busy all of the time, but especially during meal times, during bedtime, and when it is time to get us up in the morning. They see us for only eight hours each day, and I don’t know how they do it. And — would you believe it — most of them smile a lot of the time.
I wish I could smile. I used to smile all of the time — and laugh a lot, too. One day, Bill showed me pictures of the two of us. Both of us were laughing and smiling. I don’t remember where we were. Bill tries to get me to laugh by making funny sounds that used to make me laugh, but he has given that up since all I do now is stare at him. I know that he tries to guess at what I am thinking or feeling, and I would like to know how he feels. Is he sad? Angry? Both?
It is Tuesday morning and I vomited just after I awoke. I can’t wait to see Bill. He wasn’t here yesterday and I missed him. I don’t feel very well — really tired, so Konjit put me in my bed to rest. They put air in my nose to help me breathe, but it is getting more difficult just to breathe in and out. A few minutes later, the nurse came in and tried to take my blood pressure and temperature. She tried very hard to get a reading, and I don’t know if she succeeded. I am getting more and more tired.
Bill finally arrived. He walked into the room and sat down next to the bed and held my hand. It was all that I wanted. I was alone with him. He was next to me and now I can rest forever. It is time to go.
This morning, as I was driving to visit Yvonne, my phone rang. It was a nurse from Harmony Village. I said I would be there in five minutes. Upon my arrival, the head of nursing told me she was unable to read Yvonne’s blood pressure, and that her temperature was 96.2 degrees. She said, “I think Yvonne is shutting down.”
Yvonne stopped breathing about five minutes after I was in her room. We were alone. Her eyes were open, but there was no movement. I called for a nurse who put a stethoscope near her heart and said after a few moments, “She is gone”.
Yes, Yvonne is gone, but her memory and our love lives on. That vibrant, always-smiling person will never be forgotten, not by me or anyone who knew her. We won’t recall what she had become in her last days, because they will fade quickly, and that is the way it should be.
She was strong, and throughout the course of the disease that robbed her of life, she never lost her dignity. Yvonne looked for and found beauty in so many things — the arts, the city, France, Paris and love.
Shortly after we met, Yvonne told me that she had written poems. She had thought about publishing them, but never did. I want to end this story with one of them.
It should not matter what the past has wrought.
Sad or happy, all for naught
It’s now that counts I must insist.
With all of life’s beauty, who can resist?
The heart can break.
Some sadness reigns.
But overall, who can complain?
I’ve seen the rain.
I’ve felt the chill.
Yet most of life has been a thrill.
To love, to laugh, to read a book
To share it all is all it took.
This short poem is like a guide for my future. Her poetry has helped me to no longer be sad or angry about my loss and made me recognize that I can choose to continue to live, and strive to find a new meaning for my life. Unlike most stories, this one started with the end and ends with a beginning.