I was watching the Ted Danson show, A Man on the Inside, on Netflix the other day. My husband and I have only just started watching this. It was something I was interested in but was unsure I felt ready to watch until recently. I didn’t know if it would be slightly triggering. I knew this first season took place in a retirement home, and I thought it might focus too heavily on the Alzheimer’s and dementia experience, for me. Seeing what my dad went through with dementia was one of the hardest things I have ever gone through. I wasn’t sure I’d enjoy the show, or if I’d simply be rubbing salt in a still open wound.
We took a chance with it about a week ago. It’s been three years since my dad died, and though I miss him terribly and will always be grieving in a way, I don’t still struggle with the more intense aspects of the grieving process. The show is pretty great; we have both enjoyed it a lot. Although it takes place in a retirement home, that’s what it is – a retirement home, not a nursing home. The residents are far more mobile than the residents had been where my dad was, which was a nursing and rehab facility. They come and go as they please, and live in suites, not constantly attended to by nurses or nurses’ aides. It is a different environment with just a few similarities.
Memory care
It wasn’t until the last episode we watched that the show pointedly focused on memory issues, or “memory care.” There is a memory care unit in the facility, called “The Neighborhood.” In my dad’s facility, there was an Alzheimer’s unit too. Despite his ever-worsening dementia, he was never moved into it.
Becoming the forgotten
In this last episode, the increase in cognitive decline of one of the residents is discussed. Also discussed is the fact that she has begun to lose her friends because of it. They have simply stopped coming to see her. This struck me immediately, since I saw this firsthand. Not just with my dad, but with other residents in his facility. It is almost a blocking out, a removal, a brushing aside, and ultimately (ironically) a forgetting.
People become uncomfortable with seeing their friends and loved ones seemingly disappear before their eyes. I know the pain of this. I first saw it with my husband’s grandmother, who I met when her Alzheimer’s was already well advanced. Everyone in the family told me how different she had become. She was almost an entirely different person than the woman she had been. Because I hadn’t known her previously, I just became close to the person she had become, but I saw the pain etched on my father-in-law’s face, and the discomfort others had in being around her.
The list goes on
Others in my family and among family friends, also went through Alzheimer’s, and a beloved great-aunt of mine had dementia. I hadn’t seen her for several months, and when I next came to visit I had been warned of the changes. I was not prepared. Nothing can really prepare you, can it? I had to hold back tears, and visit with her as if I wasn’t heartbroken seeing what had happened to her, and to her vivacious, witty, and warm personality.
My grandmother also went through Alzheimer’s. It was the first time I actually felt a huge punch in the gut by the experience. She, like my husband’s grandmother, became an almost different person. She also had immense memory loss, and forgot who all of us were. We would visit just as kind strangers. My grandmother had been a very strong, very independent, and very smart woman. In Alzheimer’s she barely spoke, and there was always a look of fear to her.
Unfortunately, this listing of my loved ones who’ve gone through these illnesses and conditions could be far longer. I think at this point we all have had at least one or two people in our lives who have gone through it. If not, then we probably know others who have gone through the grief of losing someone to a memory disease.
Erasure
I have talked about being with my dad through his progression of dementia here on this blog. I don’t need or want to focus on how that looks or feels. Instead, I just want to talk about this removal of the Alzheimer’s or dementia patient from people’s lives, from their everyday, from their own memory.
Early in my dad’s diagnosis and for a short while after he moved into a nursing home, he regularly received visits from his friends. He had had many friends. My dad was fairly well-known in town. He had worked in local media, had worked with local leaders, had lived there virtually his whole life. My dad had also dedicated many years’ work to the town’s revitalization, as well as to running enriching community programs. He also never forgot his friends. When a very close friend of his was diagnosed with early dementia, my dad didn’t let discomfort or sadness govern his actions. Instead, he visited frequently and assisted in his care. It was not shocking but it was upsetting to me, that so many of his own friends then seemed to simply forget he still existed.
Angels
When he first went into the home, he received visits from friends every week. By the time he had passed away, it was down to us – his immediate family – his significant other and occasionally her children, one close friend, and a few cousins once in a while. Old friends would occasionally call, and they would sing and laugh together. Very occasionally, he would receive a visit from out of the blue, from someone he hadn’t seen in years.
As his daughter, this was of such significance to me. Those people who stayed in touch, who remembered him, who still had love and warmth for him, were like angels in my mind.
Not the same kind of remembering
Why don’t people visit? Is it just to avoid the pain of it? Or maybe they’re embarrassed, to see someone who had been so capable, become utterly reliant on others. Perhaps they think the person with Alzheimer’s or dementia simply no longer thinks, or understands, or feels. Certainly, they do not remember in the same way, but this varies. I learned with my dad that he remembered much. It was spotty, and he had his “good days and bad days.” But, he never forgot who we were. He might forget where he was or why he was there, but he always knew us.
Also, although he forgot specific occasions, there was a remembering still tied to those times. For example, he no longer had any memory of taking me to a Van Gogh exhibit at the Met when I was a teenager. But as we flipped through the exhibit program together one day, his eyes lit up, and some part of him remembered. He had sung in the opera Aida with the Connecticut Opera, in the 1980s. It was another highlight of my childhood. During one visit with the whole family, we played Aida from Met Opera on Demand on a laptop. He watched, enrapt, and he sang the songs, from some kind of memory. As he sang, he taught some of the words to my daughter, his granddaughter. He did not remember having actually performed these songs on stage, but he still recognized the opera, and still knew the songs.
These things may not be the same kind of memory, but they still show a deep survival of something, inside. The specific memory doesn’t have to exist the same way it had before, for it to demonstrate that they, our loved ones, are still there. My dad had lost much of his memory. Some of his behavior had changed. He suffered new feelings, new emotions, new internal struggles, but he was still there.
If wishes were horses…
This is what I wish people understood. I wish people would not turn away from the person with Alzheimer’s, dementia, or other cognitive condition. That they would not put them out of their own mind, turning them into just one of their own memories (that they may think they will have forever). I wish they would continue to visit or at least call or send a card. I wish they would continue to come be with their old friends, even if those old friends look at them with confused eyes, can no longer laugh along with shared memories, or might not even speak aloud.
It’s childish, I know, to say “I wish…” But I have heard it from others as well, others who have also gone through this process with their mom or dad, or their grandparent, or sometimes, their partner. It is another part of grieving, this watching as people stop visiting or reaching out.
One of the lucky ones?
I was actually fairly fortunate. Our family had quite a few years after my dad’s dementia diagnosis, and although visits from his old friends waned, he continued making new friends in the place where he lived. Even through covid the facility encouraged socializing, as much as was deemed safe. My dad was spared the devastating isolation that I know many others endure. He had us, his closest loved ones, as well as his new friends, and the dedicated family of the home he lived in.
A larger family
I’ll end on that positive note. The facility that cared for my dad was highly rated, and people there were dedicated to their residents. It became another, larger family. All of us – the residents and their families; the people running the facility; the staff, from doctor to nurse to rec director to housekeeper to cook; we were all part of this family. I think that kept many of us going. Each of those people saw our loved ones as people. They treated them as people. They hadn’t, in most cases, known our loved ones before they were stricken with their conditions, so they got to know them by who they had become. And that was okay. They treated them with respect and with love. They knew they were still people, that they were still in there. That’s all I’m really hoping for, and it was that sentiment that was reflected in the episode of the show. There is still someone in there, and they should not be forgotten.
Thanks for reading, and as always, please feel free to reach out with comments or just to say hi.
~ Nellie
image: my dad took the photo above, of a sunset at Hammonasset Beach in Madison, CT
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