I woke from a terrible nightmare — which some refer to as night terrors — early in the night. Events in my early life left me what I call a legacy of dreaming. I also call them an efficient compartmentalization of anxieties, stresses or fatigue.
While not quite awake, I turn to Paul in fear. He reaches out to hold me and tells me repeatedly “You are OK,” “You are safe” and “I have you and won’t let you go.”
His words comforted me as I woke up and until I realized it was an unbelievably bad dream.
I write this not to worry about my mental health but rather to tell you about husband Paul’s comforting response. He is the caregiver, and I am the one that needs care.
And that from a man who has lost most of his memories and much of his cognitive skills.
Shared care-bearing
I have been a primary “caregiver” for the nearly two years Paul has been in the home hospice program.
As efficient as “caregiver” is in describing my current daily life — I use it when I need to hurry through a conversation or task — it is not how I see my role or circumstances.
Hearing that someone is a caregiver suggests to me the image of a saintly person taking care of someone who needs help. The term leaves the listener to imagine the circumstances and gravity of giving care.
The term is vanilla to me, not the chocolate raspberry moose track that caregiving really is.
“Caregiver” does not tell you there is so much more action, drama, and color to the teaming life inside that home.
It does not tell you there are at least two people living in the drama and both have equal starring roles.
It does not convey how very hard it is for both people.
It does not convey the burden of relentless tasks of daily life or the daily losses and grief. I as the supporter and Paul as the supported one share the burden in what is an upside-down world for us.
I am doing much more than I did because I picked up all that I could of Paul’s responsibilities on behalf of our home life.
Paul is doing much less, a state that is intolerable for a man who was active up to the last four years of his life. He is grieved by all I must do.
He has time. He wants more time with me.
I do not have time and am hooked on a routine that meets his care needs, gets us, cats and hummingbirds fed, pays bills, balances checkbooks, keeps the kitchen functional, gets full garbage and recycle bins down the steep driveway for pickup, and coordinates with people who help and support us in staying in our home.
I want more time with him.
All of it is why I think of it as more than caregiving and much more than me. It is us sharing the burden so we can sustain our love, our freedom to be together and our ardent desire to support each other in a time of need, however upside-down it is.
Care bears
By now readers know I am naming this dynamic dramatic time for us as “care-bearing.” We are bearing the burdens of a challenging time.
Yet care-bearing means so much more. Care bears is a term to describe people who are kind, compassionate, and supportive of others.
Although, in my word search to be sure I did not write anything that would offend bears, I learned that care bears is a”derogatory” term used in gaming to describe people who game but avoids violence and competition.
And so do our care bears with us.
Our care bears are our supportive friends who help and are always ready with bear hugs much like care bears given to children in the aftermath of a trauma.
Happily, and with the love and support of others, we are bearing up.
Unfortunately, the term “care-bearer” does not solve the problem that “caregivers” have as well. People in their kindness and understanding of the burden may hesitate to or avoid asking us for help, telling us about their difficult life happenings or asking us to participate in something we would do in the past.
Of course, they are right, but still, I try to be active occasionally doing things I like to do. My friend Paul Cunningham has given me the opportunity to participate in public presentations.
Every invitation I accept comes with a disclaimer that my Paul comes first, and I may have to cancel the day of the presentation. Gratefully, I am usually still invited.
Cunningham and I have been on the radio twice talking about “taboo” subjects such as sexuality and aging. We will be doing a presentation on “Stresses of Aging” put on by Dungeness Courte Memory Care on Wednesday, April 24, at John Wayne Marina.
The time spent in such events is fun and rewarding and reminds me there is always more.
Later at home, Paul does not remember where I was — Costco? Safeway?
I tell him and he is happy. Later, he asks me again where did I go — Costco? Safeway?
I am all right with his lapse because I know he cares deeply and when really needed, he is there and will hold me as long as I need to be held. I lay on his arm and slept the other night so long I was worried later that his shoulder would be stiff and sore.
It was. But care bears never complain.
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 columnists@sequimgazette.com.