“Inconvenient,” husband Paul proclaimed when he realized there was yet another obstacle stopping him from doing something he very much wants to do.
“Yeah, I guess we could call it inconvenient,” I laughed at the dry understatement of our circumstance and began reciting inconvenient titles. The most prominent I recalled were “Inconvenient Truth” and “Inconvenient Woman,” the former being the dark side of our circumstance and the latter being the title of a book that I liked better than the book.
We did not know what to expect when we were given the news that Paul’s heart condition was end stage signaled by shortness of breath and a test that showed his heart working at 25 percent capacity. We thought three days, three weeks, three months — who knew?
We still do not know what to expect but I can gratefully report we are in our third month since learning Paul’s prognosis. He continues to have shortness of breath when he exerts himself and cannot stand for any length of time. He sleeps more during the day and eats less at dinner. He smiles every morning and gets up and dressed with my help. He adopted the wheelchair as his main way of getting around independent of my help. He is quite proficient unless the wheel of the chair successfully attracts the oxygen cord.
Dailiness one day at a time
I can also report that we have adjusted to a new routine, one that required both of us to adapt to new things to do and new ways of doing old things. We do our best in a time I would not describe as convenient or inconvenient. It is just what it must be.
We like being together and in our home. Now that is convenient! Neither of us can think of a day in the last fifty plus years that we did not want to end the day together. The underlying compatibility worked well for us during the pandemic and now when it is unwise for Paul to be alone.
I have learned to order groceries online for pickup usually by friends in our ever-present support system. I have learned online ordering through stores that provide delivery service. Most have worked out well and I am learning more about “gig” culture from some very nice people who shop and/or deliver. (Watch this space.)
We are experimenting with taking short trips for scheduled supply pickups or short shopping trips. We are grateful the “air hunger” attacks have been few and far between. We have become more confident in our ability to manage the attacks, enough so that on good days Paul will ride along for a grocery pick up.
The first time Paul was on a ride along, he felt so good I made a note-to-self to try more outings. The main problem is finding shade in shade-desert parking lots since he stays in the car. The best spots are usually taken.
Paul really wants to go into the store and shop. This is the man who adores grocery stores and makes friends with staff. As unworldly as this bucket list item is, it is his and we explore making it happen.
The roadblock or as Paul called it an inconvenience is getting the wheelchair to, into and out of the car. Neither of us can do it. Hospice nurse Michael suggested looking into a transport wheelchair which most likely I can get to, into and out of the car.
How are you holding up?
Family and friends ask me. I hear a real concern for my well-being and continuing ability to do what I need to do for Paul behind their question. Health care workers, close observers and past and present caregivers know the consequences of caregiver “burnout.” I share the concern and will do everything I can to avoid it.
The pain of not being with Paul would exponentially increase the pain I feel now so it just cannot happen. We all had a glimpse of that pain during the pandemic when we saw families’ last contact with a beloved person occur over a screen.
I am helped by having unflinching support from family and friends and the certain promise of help from nurse Michael or other nurses should I need them. Ashley the hospice bath aid comes twice a week and does a much better hygiene job than Paul was able to do recently even with my standby support. She feels like family.
I also feel surrounded by opportunities for comfort. Friends visit. People from years ago contact us with love and caring. I receive an email from a subscription in which the featured writer writes about his life following the recent unexpected death of his wife which feels like sharing to me. My antenna is set on receiving any message to help me navigate this uncertain time with as much certainty as I can.
Most important for me is self-awareness coupled with self-acceptance. I am not always good at it, but I try daily. For example, I have been overtaken by a strange spaciness. It shows itself in small tasks like taking Paul’s coffee to the microwave and forgetting to bring it back until he reminds me.
I suppose it happens in part due to unsuccessful multitasking, but I think it is more that I am always in a state of two plus anxiety. The more anxious we are, the less we can focus. I am alright with the state because the time warrants some anxiety.
Besides two plus anxiety is easier to manage than my first report of being in exhausted high alert. Which brings me to the most important thing for caregivers and one we all know — we need good sleep.
Sleep, Paul by my side and people with whom to share our story. Thank you for listening.
Bertha Cooper, a featured columnist in 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 firstname.lastname@example.org.