A picture is worth a thousand words. – As seen by a caregiver
Dedication: -This article is dedicated to the ‘Band of Brothers’ (like the war movie series) my three daughters and I who were in this battle together. We battled for 5 years to give the best care and support to my wife/ their mother. The outcome for each of us may have been very different without each other.
Recently, I was trying to understand why my energy and focus was returning. I am also making decisions quickly without the usual counsel of a partner. I can’t pass the buck anymore. This is a critical time for somebody who has never really been alone: an exciting but stressful time.
Rather than accept where I am, I needed to know why. My Real Estate training coupled with my background in engineering and problem solving forces me to look for a solution.
My last 7 years are a blur; 5 years of caring for my dying wife and 1½ years of constant low energy and lack of enthusiasm after her death. I always seemed to be running on one cylinder, or first gear, and constantly running out of steam.
My problem solving skills grabbed a solution out of my ‘grey cells’ which seemed to explain the change. Somehow I remembered that acceptance was one of the stages in the classic grieving process. I looked it up and there it was – the last stage. So maybe I am going through the last stage of the grieving process. Problem solved? Could this apply to the caregiver in a long term terminal illness like mine- 5 years? I wondered…could it be as simple as that?
But deep down it did not make sense to me, as I felt that I still had a long way to go.
But I could not put my last 7 years into the classic grieving process which are:-
Denial did not fit: As a care giver there was no room for denial. A caregiver cannot be in denial, who will deal with the day to day issues, financial concerns and discuss issues with the medical profession?
Anger did not fit: Anger was not allowed. Since I had nothing to be angry about, I was not dying. That was my wife’s prerogative.
Bargaining did not fit: All the bargaining was done by my wife. I was the one to deal with the arguments. Even though I could not give any concessions. Why me – ‘you drink and I do not’, ‘others drink and smoke’, ‘others very bad people’ etc. ‘why me and not them’.
Depression did not fit: No time for depression; had to have the cheerful face all of the time , there would be enough time for depression after she had died.
Acceptance did fit’ in spades’: Some of the things that to be accepted all the time:-
• Can’t complain – you are not dying.
• No immediate future.
• Stress – never ending.
• Failure is a given – no matter how hard you work – the patient dies.
• You and your wife can never again be completely in synch – one is going and one is staying.
• Guilt – for living.
• Impotency – can fix the problem – but the end result is the same.
Based on my findings, I realized that only item in the classic grieving cycle worked which is’ acceptance’. So this is not the answer.
Then ‘Battle Fatigue’ came to mind. There has been a lot written about it and it is recognized as a genuine condition. It occurs as a result of the continuous stress, survival uncertainty and constant fear encountered by soldiers in battle situations. The stress associated with caregiving for terminal patients are very similar. This constant state of stress reduces the bodies’ reserves. When the source of the stress is removed body needs a long time to accept that the stress is gone and also to build up its reserves again.
What is depleted and recovered I do not know. Probably a brain related chemical. I was at a cooking class recently and I discovered the brain operates as a constant chemical reaction. So the stress depletes certain chemicals, which have to be replenished. I think restoration of the reserves is both a chemical and a memory/experiences area of the brain. This takes hard work to restore the memory area through new ideas, activities, time and the reactions/ chemicals generated by them.
So now, I think I am at the beginning of the end and not the end of the grieving process.