Saturday, October 22, 2022


Date night by yourself is surely a different experience.

I have been questioned several times recently about what is going on a) with my husband’s health, and b) why I have not been more public about that.

Alright. I guess that is valid.

So maybe today is the day. And I guess this will be the vehicle. After all, I do call this blog RADICAL EXPRESSION.

In 2016 my husband Donald was diagnosed erroneously with Alzheimer’s Disease. This came less than two months after my mothers passing. To say that I was devastated is the king of all understatements.

I felt shattered.

Donald was emphatic that he did not want other people to know about what was going on in him and for us. While I honored his request, I also knew I could not cut myself off from the support of those closest to me. With his hesitant permission, I was able to slightly enlarge our circle of transparency and so support.

One person particularly close to us helped us get into a research center that was Alzheimer’s specific. While I am leaving out many details for brevities sake, Donald and I began an adventure in Alzheimer’s that lasted for over two years.

In most ways Donald received excellent support and care. And yet something felt off about it, at least for me. I noticed physical symptoms that did not coincide with the usual effects of that kind of dementia. I brought this to the attention of the head of the research center, who assured me I was mistaken about what I increasingly believed to be a misdiagnosis. I stubbornly pointed to what I saw to be an extremely different trajectory of the disease. Donald was not declining at the rate typical of an Alzheimer’s patient. While grateful for that I was also internally nagged that the doctors were missing and so not treating what was going really on.

At the end of a rather contentious session at the center a palpable dawning occurred for the lead neurologist.

His usually booming and assured voice dropped several decimals as he said, “I think I may have been mistaken.”

And so ended our journey with Alzheimer’s.

And so began our journey with Lewy Body dementia.

Donald was and is a genius. That has gifted him with a brain that compensates in miraculous ways for the losses the growths are neurologically claiming. The trajectory and prognosis for patients of Lewy Body dementia is always unique. Donald’s has been comparatively slow.

Until recently.

As privately as Donald wanted to traverse through this illness it is no longer possible. Many obvious physical symptoms telegraph not exactly what is occurring, but certainly that something serious is occurring. It can no longer be hidden. He now requires a level of constant care. While I am blessed to be generously gifted with some in-home care for him, it is mostly mine to feed, dress, and provide for his everyday needs. His opportunities to venture away from home are minimal at this point.

Subsequently, so are mine.

He remains the undeniably adorable expression of humanity that I fell in love with more than thirteen and a half years ago. He is cognitively still at a relatively high level of function, especially for where we are in the typical progression. He has moments of wit that still bring me to gales of laughter. His smile still melts me. His eyes still dazzle me. He is still Donald.

And the Lewy Body rheostat dims his expression slightly with every passing day.

He is still Donald.

And yet somehow, he is not.

Little, almost imperceptible parts of him are lost, and I cannot get them back.

I cannot get him back.

No matter how well I feed and dress him, I cannot get him back.

No matter how privately I go about this, I cannot get him back.

No matter how much I am criticized or praised for how I go about this, I cannot get him back.

As I have an aide who watches over him on Friday evenings, I have taken to allowing myself an evening away from home on that night. It is my version of a date night. Except it is without my favorite date.

Last evening, I went to an outside café in a busy public space. It is somewhere Donald and I had been together. As I settled into a table and awaited my dinner, I looked around at a bustle of people all going about their Friday evening activities. I recalled the last time Donald and I had visited this spot together. I pondered our level of engagement at that time. What we said and what we did not say. What we might have said had me known it would be our last chance to date night there together.

As I glanced about, I noticed a couple at a nearby table. They were busily scrolling on their phones, seemingly oblivious to each other’s presence.

I wanted to go to them. I wanted to grab away their phones. I wanted to implore them to look at each other. To listen to each other. To speak openly to each other. To be fully there for each other. I wanted to somehow impress upon them to relish each precious moment they had together.

I wanted to shout to them: "Be together!Be here, now! Do not lose this experience!Do not miss this chance! You cannot get it back!"

Dammit. You cannot get it back.

To you reading these feeble yet heart-felt words: you cannot get it back. Each wondrous, awkward, painful, joyful, heart opening-breaking moment. Once they are gone you cannot get them back.

And so I am here to tell you that date night by yourself is surely a different experience.

And I chose to be fully present to the experience that I was having, as I allowed myself to simply have it. All of it. The memories and the current reality. What I have lost, and what I still have. The man Donald was, and the man Donald is now. Even with the rheostat continuing to dim, he is still the only man for me. He is still warm, smart, adorable, and witty. No one has ever loved me like Donald loves me. And I have never loved anyone the way I love Donald. And while Lewy Body can take many things it cannot take our love. No diagnosis can rob us of that. The prognosis is our love is forever. It is undimmable.

This is long. This is not really the blog I set out to write. I suspect it is more than most of you will want to read, let alone digest.

Yet it is what my heart feels compelled to share. It is what is currently unfolding for Donald and I. When asked for transparency I will not veil it with filters for other people’s comfort.

When asked to be real I give you what is real.What is raw.What is authentic and vital. And once I share it I do so knowing I cannot take it back.

And so my words go forth.

And I cannot get them back.