Caregiving 101: How Not to Be a Pain In the Ass
Several of my friends are engaged in caregiving. Â Mostly these caregivers talk to each other for support but the voice of the person who is waging the war against the dis-easeÂ is generally not heard. Â I want to share this piece by one of my readers who is also my friend. My hope is that it will help you to be a better caregiver when the opportunity presents itself.
A Pain in the Ass.
Posted Sept 4th 2012
There comes a time in a life when comfort comes in very limited currency and peace of mind becomes too difficult to negotiate. Stakes are high and old strategies die fast. Food is simply not enough. No measure of smooth garlic-mashed potato will soften the edge; nor will sweet baby corn doused in olive oil or any combination of exotic foods from the Far East fit the bill. Yet, at the end of a day man finds a way to carry on.
I was doing better than well enough, or so I thought. I wanted to congratulate myself and hinted to my wife one morning as we shuffled around our re-built galley-style kitchen making breakfast. She was working on a home brew fix. The smell of new wood and coffee mingling in the morning air was enough to get a good man drunk. I love the smell but have no appetite for the darker than black intoxicating drink. I was to start my day with a purple colored smoothie of berries and flax seed. The oversized blender interrupted our exchange with a thundering roar like that of a passenger jet cruising the runway.
â€œWhy,â€ she asked. â€œWhy are you to be congratulated?â€
Well I am doing everything I can to get a handle on the rectal pain, I responded.
I was proud of myself but a little self-conscious and in need of a reward, a badge of some sort â€“ a purple heart? Something more than food.
â€œYou know,â€ I continued, â€œ I have experimented with just about every remedy there is out there from orthodox to alternative. And after years of chronic pain there is still no peace, and I remain in relatively good spirits.
She is listening.
I could make a good case for a man in my position. After years of effort with no significant change and little to show, a man could go off without warning. I could hear the story on the radio. Man goes out to the Mall with a cache of artillery and opens fire on an unsuspecting public. Police are investigating the cause. The scene is totally pedestrian, totally mainstream, and totally American.
I continue: Since you would have the car at work I will have to rely on the Harley, my ammunition will be divided between saddlebags and a backpack. Reader, you already have a new twist to the narrative: man, motorbike, and semi automatic rifle. Before the investigation takes wing you already know the story.
The media profile would first list the maladies, intersected with interviews of our neighbors dovetailed with samples of my work and a bit of international history. Then later that night the updated installment would include sound bites from old friends in the Hudson Basin region. One of them would be sure to say â€“ â€œThis is no ordinary man gone mad, stage four cancer â€“ you are talking dead man walking.â€
Wife, you would be left out of the interviews-naturally. Better the neighbors than the wife. Neighbors might reveal some surprising tidbits.
Knowing that no such thing would happen she looked at me with a toothy grin and said: You are a funny man.
By the time we finished our morning ritual I was no further ahead. I had made my case for support and that was that. No reward. No certificate of sanity under strained conditions, no star to pin on my morning shirt. I was a man with a pain in the ass and that was all. As long as I had not become â€œa pain in the assâ€ to myself , all was well with the world.
We can agree that no one really wants to hear about another personâ€™s suffering. To be fair itâ€™s understandable. Day one, you can get away with a headache, or, â€œHoney I stumped my toe on the bedpost,â€ but beyond that you are on thin ice-no takers.
Chronic pain is a terribly depressing affair and since one can do very little to change the course of events , who wants to hear! When we ask our partners how are you, all we want to hear is â€œFine.â€
It is in part for this reason, among other considerations, that I have stopped writing the cancer chronicles with any frequency. I have shifted my gaze from a focus of fighting cancer, to living with cancer, a quantum leap. A conscious fight with the demon keeps it front and center to the living experience. And therefore exploiting critical energy that could be otherwise engaged. Hence, I am out of the ring and reflecting on the life-scape, looking inside and out at once.
In doing so, I have made several instructive observations.
As long as I was busy in the studio creating new work the pain was reduced to background noise. I could be working on a musical composition, a new drawing, installation, or simply rehearsing the roycrosse quintet. In all cases the creative process had a compelling punch. New and exciting work engaged the intellect, fed the spirit ,and reduced pain â€“ – -what a revelation.
Conversely, when I retired for the day, when I had put my tools away, put my head down and the machinations of my brain were put to rest, the pain returned with a vengeance. Hence, a goodnightâ€™s sleep has become a mythological construct. You might call it a self styled pain with its own rites of passage. It has occurred to me that the puzzle of sleep and pain might be resolved with an equally creative invocation. But, by the time I am ready to rest , that investment is already spentâ€¦whatâ€™s a man to do!
In a recent article on pain (AARP Aug/Sept issue) the famous Dr. Mehmet Oz talks about â€œa more complex but little understood cause, one thatâ€™s tied to how the brain processes pain signals. With long exposure to pain, nerves may actually hard-wire that pain into a kind of neurological memory, so even when the source of the pain is gone, you still hurt.â€
It is also noteworthy that positive thinking can enhance the bodyâ€™s tolerance for pain. In simple terms, if you cannot get rid of pain, you can notch upwards your bodyâ€™s capacity to bear it out. The combination of these two coping techniques can and will increase oneâ€™s pain threshold, so that pain that was unbearable a year ago can now be tolerated as long as one remains active and mentally stimulated. You can avoid the temptation to jump out the windowâ€¦or go to the Mall (loaded).
We assumed that my rectal pain is directly related to the status of the colorectal cancer- a reasonable assumption. Meanwhile, the lower extremities and parts related to the sternum which have been compromised, have taken on new and mysterious ways to issue random pain episodes. Sometimes this occurs at the expense of days and nights without productive work or sleep.
But clear and distinct links and the relationship between all the players have yet to be established. It will be some time again, I imagine, before I can get a measurable handle on the cause and geography of pain. The most recent scans â€“ two months ago- say itâ€™s not getting better. One oncologist says: I am surprised you can breathe. It has spread to your lungs.
Well I am breathing easily, living vigorously and I am not going to the Mall.
August 31, 2012
This is one post in roycrosse’s cancer chronicles, a series he wrote so that he would not have to repeat the dreary details to everyone who called to inquire into his health. Does this give you any ideas about how to care for someone better. What do you think about seeing the world through the writer’s eyes? Â We hope to publish these as an e-book to help pay for the treatments roy’s medical insurance WILL NOT pay for. Â I hope you will help me support him by buying this book in the very near future. Meanwhile leave a comment and let me know what you think about the post.