One Step Forward, Three Steps Back

We celebrated Cindy’s birthday on Sunday at our usual haunt: The Wood Creek Bar and Grill. We invited a few family members and the local companions who have been visiting Cindy. We would have invited more but I knew word of mouth might draw in a few others, this is Norfolk after all, and too many people would be too confusing for Cindy.

Cindy with her sister Lynn and brother Ray

After the party I looked back on a post I made a year ago, about the birthday potluck supper we held for Cindy last year at our church. The post shared what I anticipated would happen to Cindy in a year, enabling me to reflect on what has changed and what has come true.

Many people were invited and came to the potluck gathering last year. Even so, Cindy enjoyed herself both times and both times people were enamored with Cindy’s smile. However, last year there was a time when Cindy teared up because of the nice things being said about her; this year there was a time when she could not fathom what was going on, even with the smaller gathering of about a dozen people, because of sensory overload.

Last year I was not certain if she would even have another birthday, adding that she probably would not be able to walk by then. That forecast was half true. Cindy really cannot walk on her own at this point, but where there is a will there is a way. The weather was spectacular for a day in February; we placed Cindy in the “date mobile” and I wheeled her to the pub.

We think of dementia as a disease of continual, unrelenting degradation. In truth, even a diseased brain has some plasticity, some ability to learn, even if the “learning” is simply relearning of things already known. I once thought the point at which Cindy could no longer walk on her own would be the point when the battle to maintain her quality of life, and our relationship as husband and wife, would be lost. Thanks to the brain’s plasticity, along with some perseverance, that has not been the case. It’s one step forward, three steps back for the mind with dementia. The trick is to keep that one step forward heading in the same direction.

Just like with vector geometry, there are two components to the direction I hold for Cindy. One is levity, the other love. I combine these every day when I tell her the same bad jokes over and over and over again about our relationship. Occasionally, she still comes back at me with a real zinger.

I am getting Cindy ready for bed when I ask her: “Don’t you think I’m a hunk?” At the end of the day she is tired and answers at first with a spacey “Yeah.” Then she suddenly snaps out of her trance, declares “No!” with a laugh and I can tell she is quite proud at how she just put me down.

Similar to this are all the times I get Cindy up from the chair and hug her to help her regain balance. Invariably she sighs, because even getting out of a chair requires effort on her part. Yet I say to her: “That’s OK. All the women sigh in my arms,” to which she practically snorts her derision.

Even without humor I use subtle opportunities every day to remind Cindy that: “We make a good team,” or “I’m so glad I married you,” or “We have a good life.”  I’m hoping that, even as all else might fade, Cindy holds onto the thought of being happily married to me until the end. The trick is in the steps forward.