“Who am I?” husband Paul asked when I rolled over to say good morning.
Hmm, I wondered. He was smiling, but seemed serious. Not knowing who he is happened once before, and he has yet to tease about any of his forgetfulness.
Smiling back, I asked him, “Who am I?”
“I don’t know,” he said.
The most remarkable feature of this morning conversation is that it did not seem to bother him that he was in bed with a strange woman.
The next most remarkable feature was that I was not puzzled or frightened by his strange questions.
I have grown used to the unexpected resulting from the dementia that has befallen Paul in this, his last phase of life. His heart no longer does the work of renewal.
I have written before about the small losses that together turn into the greater loss of the man I love, married and been with for 53 years. The pathway of his mind losses has been difficult, more for him than me.
Paul lost his sense of control and parts of his sense of self.
He fought it while experiencing ever increasing symptoms of distorted memories and incidents.
We were helped through all of it by Dr. Paul Cunningham who prescribed the right medication to control agitation and our Optum hospice nurse Laurie Conville, who taught — and continues to teach us — more about expectations.
For example, Paul began swearing more when he was unable to do a task he could have easily done before or on hearing disturbing news. Most of us have or do respond with colorful language in similar situations; the difference for Paul is he has less words to explain his feeling or point of view.
Laurie explained that his vocabulary is declining. What will remain the longest are strong emotional responses.
I know his love for me and us is his strongest emotional response.
Paul’s bucket list
Despite some of the frustrations, Paul maintains a pleasant nearly happy countenance most of the time with me and always with visitors. He welcomes them with a warm smile and brightly asks how they are. He talks about the weather.
Paul can still make his wishes known and can be quite insistent. He wanted to listen to music records. As a result, and with the help of a good friend, the cabinet with a decades old sound system was moved to our central living area.
We have many albums from our young lives and time together that never fail to evoke emotionally beautiful feelings, as if every one of our cells holds a piece of beautiful music memory.
Listening to some music is an almost painful experience — not because it hurts or is long gone, but because it is crushingly beautiful.
Along with music, perhaps higher on Paul’s bucket list was a strong desire to walk into our yard, put his feet on the ground of his creation over our 25 years in Sequim.
As simple as it sounds, it is complicated because it is on a slope without a safe way of walking down that slope.
Paul said we needed stairs so that he could walk down into his garden creation. We had them built. I call them “Our 2023 Trip to Paris Stairs.”
Once built, the challenge became helping Paul get safely down and back up the stairs. After hearing Paul complain no one would take him into his garden, Amelia Malcolm, our great hospice nursing aide and supporter, made an extra visit and walked him down and up the stairs.
Paul was happy and I was relieved that Amelia was there, not only is she strong, but she also knows what to do to keep Paul and her safe.
Paul talked for days about the “good day.” Weather permitting, Amelia has offered to take the walk with him again.
Reflections on ‘hand love’
I still feel disbelief that we have gotten to where we are. Paul and I made it through many challenges and arrived at a way of living neither of us would have imagined. If I had known this at the start of the journey, I would not have been as scared.
Of course, I thought I was going to lose Paul in one or two months. Neither Paul nor I were ready. I like to think the universe knows and is giving me and Paul the gift of time.
We still do not want our time together to end but we are not as anxious and often go a day without feeling sadness. Dying is not the shadow it was.
We are having new experiences. We have a new language or better said, I have learned what Paul means when he searches for a word to describe something like a Q-tip and comes up with the wrong word, “napkin.” Or, holding a hearing aid and saying, “I can’t get it in my mouth.”
Sometimes, it is amusing, and we both laugh. More times than not it is endearing, such as “hand love.” He said to me one day, “We have hand love.”
I knew exactly what he meant because we fall asleep holding hands or search for each other’s hand during the night.
The other morning when he wondered who he and I were, I told him and reminded him of how long we have been together.
He was pleased and by the time I brought coffee, he knew me well.
The experience of the last year is one I will never forget. Nor is it one one I would exchange for another.
Meanwhile, I can look forward to more time with this determined resilient man.
Bertha Cooper, an award-winning featured columnist with the Sequim Gazette, spent her career years in health care administration, program development and consultation and is the author of the award-winning “Women, We’re Only Old Once.” Cooper and her husband have lived in Sequim more than 25 years. Reach her at firstname.lastname@example.org.