Nancy Reagan’s daughter Patti wrote a memoir about losing her father, President Ronald Reagan shortly after he died. She named it after watching her mother describe losing him that way.
She titled it “The Long Goodbye.”
Although the book was a beautiful journey through dementia and Alzheimer’s, it was the title that resonated with me.
“The Long Goodbye.”
Patti’s and her mother Nancy Reagan’s goodbye lasted years. It encompassed saying goodbye to the person who lived inside their loved one’s body, all of the shared memories and conversations that became theirs alone, and then, the slow decline of the body that once starred on the Hollywood stage.
When I read it, I did not relate to the Alzheimer’s piece so much as that title. Her descriptions of what it was like to lose him, little by little, followed by the need to reinvent reality, to recolor the landscape of her life, framed her farewell in a painfully beautiful way.
I don’t think I had language for it then, but I do now.
There is something very specific about living through a long goodbye with dementia, something that stretches time in a way that feels both cruel and strangely quiet at the same time.
Before I knew what it meant to lose someone slowly
It was about ten years before I read this book that I actually had my first experience with Alzheimer’s, but in the late 1970’s and early 80’s things like this were hidden from the public view (as well as the family sometimes) so most of my memories centered around listening to my mother talk to my grandmother about it.
That is, until my “Grampy Max” showed up at Week’s Family Restaurant on a sunny summer afternoon in 1979. I was a waitress there. When I approached him, I gave him a big smile and said hi. At first, I thought his smile was sincere and familiar, that he knew me.
But that wasn’t it at all.
He began to flirt with me.
Really inappropriate flirting.
He told me I was a hot little thing.
I was horrified.
The manager on duty that day caught on to what was happening and came to offer support. The look on my face, coupled with the look on his face, painted a pretty clear picture of what was going on. Before he could intervene, I pulled him aside and mentioned that this customer was my grandfather and that he did not recognize me.
We stood for a moment, and then Grampy Max demanded a cup of coffee. The mood change was swift and sudden. I smiled and apologized and brought him his coffee. As he sipped it, I called my grandmother while my manager chatted with Max. It took several minutes for me to reach anyone. My mother finally answered and she managed to track down my grandmother.
“Don’t let him leave!” was the message from both my mother and my grandmother.
When they arrived, Grampy Max was confused. Again, a sudden mood shift and bizarre answers. They loaded him into my grandmother’s car and off they went.
That moment—standing there while he looked at me like I was a stranger—was probably the first time I experienced what it truly means to be losing someone slowly while they are still right in front of you.
The strange rhythm of dementia and memory loss
Grampy Max was a runner. Not a competitive one like me, rather an “in the throes of dementia” runner. He was an escape artist. My poor grandmother had him delivered to her doorstep several times before she made the painful decision to put him in a nursing home.
Looking back now, I can see how much stress it must have put on her as his caregiver, trying to manage someone who could be completely different from one moment to the next.
While many of these memories of him are agonizing, some are funny. Their dog got really fat because Grampy Max would feed him several times a day. He also read the same newspaper all day long.
The character “ten second Tom” from the movie “50 First Dates” comes to mind.
My Grampy Max was a PTSD suffering Korean War Vet. He was a hard worker. He was funny. I was in college when he died, and I do not recall attending his funeral, although I may have.
My Grams Butterfield, my mother’s mom, lived another twenty or so years. She faded in a much more manageable way.
She had macular degeneration and lost her ability to see effectively long before she died. However, she “saw” lots of things that she loved to talk about. One Thanksgiving she casually asked me if I was going to invite the Puerto Ricans on the porch in for dinner.
I paused for a moment, and then went outside to invite them in. (I told her they declined but sent best wishes.)
My Aunt Michelle became her full-time caretaker and they enjoyed many years of adventures and shenanigans.
Aunt Michelle is in a nursing home now and maintains full control of her faculties.
I often ponder the fact that once people lose their memory, they can live quite comfortably and happily in safe settings. The hard part is for the people looking at a familiar face and seeing a stranger living inside.
It’s not just emotional either—it wears on your mental health in quiet ways, the kind you don’t always notice until you’re already deep in it.
The in-between part is hard on everyone. It’s a kind of grief that doesn’t have a clear beginning or end. I’ve since learned people call it anticipatory grief, but at the time, it just felt like living in a constant state of almost-loss.
That is the part of watching loved ones fade that no one really prepares you for, the kind of grief that doesn’t fully arrive all at once.
When they come back, even for a moment
Grampy Max would have times when he was lucid. Totally himself. We would regale him with the stories of his escapades and he would laugh and cry. He did not like to hurt my grandmother or lose control. Yet that is what happened again and again.
In those moments, he wasn’t just my grandfather again—he was also a patient aware, at least in part, of what was happening to him, which somehow made it harder.
Those moments matter. They linger.
Because in those moments, you realize they are still in there somewhere.
And maybe that is what makes dementia and memory loss so complicated—it is not a clean break. It is not a single moment of loss. It is a repeated awareness that something is slipping, over and over again.
I never had that kind of goodbye with Molly
I never had a long goodbye with Molly. It is not always old people who decline slowly. Molly was essentially alive and fine and then dead. The brick in the throat suddenness of this event took me a long time to process.
I often wondered if it would have been easier to know she was sick and have the time to get ready for her death.
Except then the entire end of her life would be about her brain tumor. The suffering. The long goodbye that Molly would have had to endure.
That kind of waiting has a name too—anticipatory grief—and I’m not sure it would have made any of it easier.
I think I like the short version of goodbye.
Even writing that feels strange, but it is true.
Because when I think about sudden vs slow death, I don’t actually know which one is kinder. One destroys you instantly. The other stretches the pain out across months or years and asks you to live inside it.
Living through it again, in different ways
As I age, I find myself dealing with memory, dementia diagnoses (or misdiagnoses) and Alzheimer’s. This makes sense, as my community is aging.
It does little to ease my mind.
My friend David, who presented with some cognitive issues that looked like dementia but is really a response to trauma and medication.
My mother, who seems quite fine at the moment, but can no longer live alone. There is a quiet shift that happens there, where you begin stepping into the role of caregiver whether you feel ready for it or not.
And Kenny, who better stay healthy because we have a five-year-old to raise.
Then there is my neighbor Bill, who began to repeat himself, then wandering off, then not recognizing people he has known for a lifetime, to not saying much at all. He comes outside less and less.
It is almost like we simply disappear.
Which is heartbreakingly terrifying. Not just because of the loss, but because of the stress and the slow erosion of certainty, the toll it takes on your mental health as you try to keep up with something that keeps changing.
And this is where I understand, in a much deeper way, what it means to be living through a long goodbye with dementia—not just once, but over and over again, with different people, in different forms.
The people who stay are the ones holding everything
I often think about how the people losing their memory may, in some ways, be spared from the hardest part.
Because they are not the ones holding onto what used to be.
We are.
The ones remembering who they were.
The ones noticing what’s changed.
The ones adjusting, again and again.
That is the quiet weight of losing someone slowly, you are grieving while still showing up, still answering, still loving.
What I carry now
So, I love you Grampy Max. You taught me a lot about things I am still trying to understand.
In my efforts to care for my mother, my friend David, and Kenny, I carry knowledge and caring. Empathy and fear. Loyalty and love.
I carry the long goodbyes and the sudden ones.
I carry what it means to be living through a long goodbye with dementia, even when no one calls it that out loud.
I carry the ones that gave warning and the ones that didn’t.
I sure wish it was 1980 sometimes.
It seems much easier to see your life disappearing in the distance ahead of you, than in the distance behind you.
And so it is.
