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Picture Worth A Thousand Words

Picture Worth A Thousand Words

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.

Why now? Why not a year ago?
So my brain automatically started to look for a solution. Engineers like to analyze a situation in order to understand what happened. We need to know what makes things work. Maybe it will help someone else to cope better if they know what I went through and why.

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, anger, bargaining, depression and acceptance

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.

Normal Grieving curve looks like:

Long Term Caregiver curve is more like: Guess who is in the middle?

Be happy you survived a major battle

Discussion

  1. Dee  July 16, 2012

    Clearly one cure doesn’t fit all and everyone’s picture will be different dependant upon individual circumstances. Family situation-young or older children, Family support, Friends support, Employment situation- demanding job, Financial situation- sometimes the long term care depletes any reserves built up. There are so many internal plus external factors that make it impossible to compare grieving spouses-what works for one will likely not be as effective for another. From my experience I’ve found that too many try to handle the situation on their own ( ladies are just as guilty as the men in this regard) and justify their actions by stating that they are trying to protect the kids and give them as normal a life without Dad (or mom) as possible. What a waste of bothTime and Energy and no one is fooled, especially the kids! Rather than a grieving process, I found it much more beneficial to label it a “Change Process” as this to me depicted what was going on, not just in my changed life, but the lives of my children also. By accepting that things will never be the same and that until we accepted this fact we would continue to roll about in the “Grieving Activity Trap” with a victim mentality. It’s up to each spouse to determine when best to shake off the victim mentality and get on with facing the changes that are necessary to move forward. This is never easy but with the support of family and good friends the journey can be a wonderful experience.

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