We are coming upon the time the poppy garden is in full bloom. I remember last year how thrilled I was that we fulfilled husband Paul’s dream of having a Monet-like poppy garden. I was happy he would see it before his heart finally failed and he left this life.
Now, a year later, he sees the poppies again.
At the time, we were told Paul had end stage heart failure and had only weeks to months to live.
About six months later, the nurse practitioner who visits every two months to certify Paul for continued care under the Medicare Hospice Program told me and later I told an ecstatic Paul that he could live as long as another year.
We could have but did not call it a new lease on life. What changed the most for us was our perspective of the future.
We had more future — a welcome adjustment.
Surprisingly, it was an adjustment that took work. Much of our daily life would stay the same — I manage his medications, meals and help with dressing, Paul still independently transfers from wheelchair to bed, toilet and chair and back again.
We started a program of arm and legs exercises to maintain his strength. Paul felt renewed energy from the prospect of another year and wanted to do more things, go downstairs to play records, or go through office papers and go out to see things or eat in a restaurant. He wanted to walk through the garden that he created.
The hard reality was that more time had not given him a stronger heart or improved vision. Doing any of those things required help. The risks of falls, shortness of breath and continuous oxygen are always present.
It became my job to figure out how we could do some of it and remind him why we could not do all of it.
Both are difficult jobs — some we will solve, but the reminders will never get easier.
No time to waste
The first problem I had to solve was figuring out a way I could get the heavy awkward wheelchair into and out of the trunk of our car without disabling myself. Up until now, we relied on friends and family when they visited.
Now with more time, we wanted to build flexibility and freedom into going out, whether for appointments or eating out. Conquering the wheelchair lift saves time.
I have written before that being a public health nurse was one of my best jobs. Caring for people in their homes in the days before disposable supplies and with little medical equipment required improvisation. Also, being a smallish woman means I must use my brain since I do not have the brawn. I put all that to work and came up with a plan to get the wheelchair in and out of trunk of car.
So far, the only thing that has gotten banged up is the wheelchair, but a simple bandage of masking tape works to hold the handrail together. As they say, it is not an easy lift, but I can do it. It is a hard lift for Paul who formerly protected me from all such lifts.
Time has become a commodity, one to be spent wisely because we do not have as much ahead as we would like and little room in our daily lives to get done what needs to be done and what we wish to do.
One person suggested I take Paul out more; that I “lean toward quality of life for him.” It was only the second time this year that I felt I could not do enough. I felt terrible and wondered where I could find the time and energy.
So, I did what I always do — talk with Paul.
Even now, with diminished mental capacity, Paul becomes Paul and responds when he recognizes my need. He said that person does not know us and how we are.
He knows the only thing I have left to give up now is the writing I continue to do — this column and a few other writings. He does not want that for me and tells me often how I will write for years and that I must. It is what I do.
No energy to waste
Our age difference of 16 years and life differences have always meant sacrifices on both our parts depending on the phases of life which are likely different phases with differing priorities. We have learned how to do it.
We are both sacrificing so we can be together in our home because we want something greater for us.
This phase is no different except illness (his) and age (his and mine) — both of which limit time and energy.
We are keenly aware we must keep as fit as possible and that requires discipline.
There are no excuses as long as our goal is to be together. My nightmares about something happening to me are more serious now that there is more time. I worry what would happen to Paul, how he would feel and be. I must choose carefully so I am here in all the ways I need to be.
Limited energy has resulted in sad and regrettable losses in relationships, people whom I disappointed because I pulled in my emotional boundaries to preserve my strength. Perhaps it was inevitable, but it still feels like failure.
Sometimes, we simply must let go.
Sometimes, we do not let go unless there is nothing left.
What was a rush to eternity has turned into a slow walk, one that requires adjustments as bits of Paul disappear never to return. As I told a friend, “Everything worries me and everything makes me sad,” but there is not one cell in my body or a whisper in my heart that would have me be anywhere else.
I know deeply that his love for me will be the last thing to disappear.
Bertha Cooper, an award-winning featured columnist with the Sequim Gazette, spent her career years in health care administration, program development and consultation and it the author of the award-winning “Women, We’re Only Old Once.” Cooper and her husband have lived in Sequim more than 20 years. Reach her at email@example.com.