Updated 9/23/17
A String of Good Days
I have again succumbed to the “string of good days” syndrome, not realizing I was adjusting my definition of “good” along the way.
Quality of Life
When I was interviewed a couple of months ago for a story in the Portland Tribune about genetic testing, I mentioned Florence. The reporter wanted to know why I thought people living with dementia still experienced quality of life.
“She enjoyed the smell of roses I brought her for Mother’s Day,” I said.
When I visited her last week, I knew she didn’t recognize me. It was the first time that had happened. Her cognition had slipped another notch.
In three years, I don’t think she’s ever known my name, ever even said my name. I’ve always known she knows me by how she would light up when she saw me, reach out for me as I approached her. I’ve been telling families for years that “people with dementia always know your presence by your energy—they can feel your love up until their last breath.”
I still believe this to be true, but I am reminded again how difficult it is to know that when you feel stabbed in the heart, seeing the person you love not recognize you, realization sinking in that another battle in a long war with an inevitable outcome has just been lost.
A Significant Change
I sat next to her, held her hand, and got…nothing. No response.
This woman who always grabbed my hand and rubbed it in hers to warm them up, who made a point of touching every piece of jewelry I was wearing (to the point I started wearing more than usual for my visits, because I knew it delighted her), was no longer able to make eye contact.
She was leaning too far to the right. Her feet, decked out in wool socks, were so cold they chilled my always-warm hands.
I called hospice. “I think she’s had a significant change,” I said to the nurse. I described what I was seeing. The nurse said she would come do an assessment.
“Um, I know I hate it when families ask me this question, and you probably do too, but I’m asking it anyway…” I rushed out in a whoosh, while another part of my mind chided me for asking. The nurse kindly said, “Well, as you know, we can’t predict the future exactly, but…” and went on to explain to me what everything I was reporting meant.
If You Tell Me a Timeline
I cringe when families ask me a timeline. I don’t have a crystal ball, and I don’t want to unintentionally mess with their emotions. Nor do I want to mess with their plans by giving them an educated guess that turns out to be off the mark.
As I asked the question, I realized what I was really trying to convey. “If you tell me a timeline, then I can be prepared. I can steel myself and I can see this coming and I won’t be blind-sided.”
And of course that’s just bullshit, because it’s always just as much of a shock as if the person was hit by a bus—it goes straight back to the “string of good days” syndrome. Because our definition of “good” evolves over time. The absence of bad is enough to be good.
By Any Definition
I was reminded of when my Grandma Anna was dying. Her respirations had dropped to eight per minute. I made the call to hospice while my mom sat with Grandma Anna.
The nurse on call, a wonderful human being, happened to be one I worked with frequently in my capacity as a memory care director. I reported the information to her, and asked the same question.
She answered the same way, “Well, Christy, as you know….”
The memory just brought home to me all over again how difficult it is to watch someone you love move through the dying process. So difficult that even a professional can get rattled enough to have all her knowledge desert her.
All I know for sure is that the string of good days, by any definition, is over.
Christy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.