What is it like when your spouse finally dies from Early Onset Alzheimer's?

I knew that the average lifespan of Early Onset Alzheimer's is just seven years from diagnosis. However, when my wife Kimmy died twelve years after diagnosis, her long expected death actually came as a shock or a surprise. Why?

I think during the first seven years after her diagnosis, I was too busy taking care of her and raising our kids. My life was on a high speed track, while Kimmy's was derailed and slowing down.

Her admittance to an assisted living facility three years after her diagnosis, was designed to help her have a better quality of life. At home, Kimmy was surrounded by things she could no longer process or understand. It caused her great anxiety, behavioral mood swings, and anger management issues. This led to a concern for Kimmy's health as well as the health of our kids. A year or so later, after a series of stays in a psych ward (caused be her deteriorating brain cells and behavior) Kimmy's health declined to a point where an assisted living facility was no longer a safe environment for her. In 2017 she was placed in a skilled nursing facility. I guess at that point I (and others) assumed Kimmy was digressing fast and that she would probably die soon,within that seven year window.

Well, that is not what happened. Kimmy was able to withstand much of the decline and issues the disease inflicted upon her. She settled into a state of existence that truly had no ups or downs relative to her decline. Other than her ability to move around on her own, it was a long period of status quo. She eventually ended up wheelchair bound for her own safety.

During the last four years, things just stayed the same. It felt like she would or could go on living for a long time. She did! Until I got the call from the director of nursing. Prior to that call, there were some subtle signs that she or her life might be waning. "Cachexia" is an end of life stage common with many long term illnesses, including dementia. It is when the body is unable to maintain muscle mass and the person starts to lose weight, even when fully eating and getting supplements. This had started happening to Kimmy about a month or so before she died. I had recognized that she might be entering the final phase of her life, but thought it meant she would be on a slow final decline.

So, yes! When I got that call from the director of nursing telling me that Kimmy had died in her sleep, I was initially shocked,but then somewhat relieved. No one should have to live as she had the past few years. Kimmy had no quality of life, period.

The calls to my kids and both of our families went out. Planning for her cremation and a memorial service took up a lot of time and energy during the weeks that followed her death. Family and friends from all over joined us as we prayed for her and honored her life as a woman, mother, and wife. Then, as suddenly as she died, her service was over. and everyone left town.

A day or two later, I was outside with our dog Koda. It was early morning,the valley my house looks over was serene. A red tail hawk screeched its familiar "kree-eee-ar" as it floated above me,then disappeared over a ridge. I stood there for a moment, taking the countryside in. It was peaceful.

Then I heard it!!! Have you ever heard an expression or thought that goes like this...

"What is that sound I hear? It's silence!"

"It" was a silence unlike any I have heard for twelve or fourteen years. I was like, whoa, it is really quiet around me. Not just around me though, but also within me. Within my mind, my body, my soul, my very being. It was startling! Then I realized what it was...there had been an audio track of life creating a chaotic and stressful buzz, or ambient noise within me. The churning, grinding noise created by the issues Kimmy and I were experiencing prior to her diagnosis. Then, her seven month period of testing. Then, her diagnosis and the realization that she had a terminal disease. That I would lose my wife and my kids would lose their mom. Then, taking care of Kimmy and the kids. Then, dealing with her family, who did not see eye to eye with me on the direction for Kimmy as she battled her disease. Then, Kimmy going to assisted living and skilled nursing. Then, all of the medical and family decisions. Then, the financial woes her disease created for our family. Then, issues with her health and the skilled nursing facility, which caused her pain and suffering. Then, a criminal case I had to be involved with. Then. her sudden death and having to share that with our kids. Then, the arrangements for Kimmy and creating a memorial service. Then, the actual day of the memorial and entertaining family from both sides .

Then...suddenly, it was all over!!! Fourteen years of a chaotic, stressful, twisted, abnormal, loud, screeching, and grinding audio track was turned off. Silenced! Deleted! Gone!

The sound of that silence was startling and profound. It made me think...if I had all of that noise going on in my being, what must it have been like for Kimmy during those early years when she knew what her diagnosis was, and that she was doomed to disappear into herself and fade away?

Thankfully, there comes a point where their cognitive function declines to a point where they no longer know what is going on around them or within them. They experience a "silence".

I do not know what to do with this silence I am experiencing. I yearn for the wonderful, beautiful, poetic, amazing, adventurous, and loving noise Kimmy and I had prior to her disease. Thankfully I guess, I have tons of memories, photos, and videos to keep the "noise" of Kimmy and Me alive forever. I simply just have to hit the play button and turn up the voluime!