Down the down staircase.

The downward path that any of the dementias take follows various routes, with stops and starts along the way. There are plateaus when it seems the diagnosis is a bad dream, when everything seems all right again. Normal.

Until the next minute or hour or day when the nightmare resumes.

Even though I often say — and truly believe — that my husband isn’t as bad off as most, that my caregiving tasks are easy compared to some, truth is, it’s a roller coaster ride that is not for sissies.

We’d been coasting along with mild ups and downs, a kiddie roller coaster, until one day three weeks ago. Peter and Nobby returned from a weekly nursing home outing with ever-faithful Bill. My husband came back so distressed and overwrought that it was as if had morphed into another person entirely. His mild-mannered self was gone, and in its place was a man I didn’t recognize. His face was different, his eyes were wild, his whole demeanor changed.

“That’s it. We’ll never go back there. Can’t go anymore,” he yelled as he paced. “They won’t let Nobby in any more.”

My worst fear came to mind. “Did Nobby knock someone down?” I asked. He’s a big dog, but as affable and lovable as a puppy. I envisioned him jumping on a frail old lady causing her to fall and break her hip.

“No, no, but they won’t want us anymore!” I continued questioning, but he couldn’t explain.

I contacted Bill to ask what had happened. He said Peter seemed “off,” very quiet, and he hadn’t wanted to go to their usual lunch. Nobby had been his usual friendly self,  no one was harmed, the visit had gone as well as it always does. Bill chuckled when I told him Peter thought he had gone to visit his mother. (Bill’s mother passed away twenty-some years ago.)

That day was a turning a point, a sharp turn in the steep, down staircase. I had hoped he’d magically snap back to the way he was, to the holding pattern he’d been in, but he hasn’t. This, then, is his new normal.


Nobby always watches Peter.

Header photo: Who is walking whom?

2016 National Society of Newspaper Columnists’ contest finalist. 



18 thoughts on “Down the down staircase.

  1. I’m so sorry. This disease is so entirely unpredictable. When you wrote about that 3 weeks ago, I assumed Peter would go back to his “old plateau,” not his old self, but latest usual. It is an incredibly difficult roller coaster because, like that proverbial ride, you cannot see ahead. How are you doing…that is the real issue! What can I do for you…

  2. Sending hugs to you filled with gratitude for you as a caregiver, it is an extremely difficult job, but you are doing it well.

  3. Judy, I know you’ll still keep on keepin’on… as long as you possibly can. But please know when it’s too hard to do that and another arrangement is necessary. I am thinking about you and Peter every day.

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