That is a reality that Caregiver’s often simply refuse to accept. I think one of the things that allowed me to survive and resulted in a better life for Mary Ann was that I didn’t waste much time on things I couldn’t fix. My goal was to try as hard as possible to figure out what we could actually do that would make a difference for good in whatever new symptom or return of old one or change in the effect of a medicine or loss of ability was impacting her.
When a Caregiver does not accept the reality that he/she cannot fix his Loved One, the frustration becomes almost unbearable. The illusion that the Caregiver can fix his/her Loved One is often worst in folks who seek to get their world under control, folks who tend to take charge, just the sort of folks you want among your close and trusted friends, since they are not shy about saying what they think. In a group, they are the ones that organize activities, the ones who actually get the work done. The trouble with that view of the world is that it is an illusion. None of us controls the world around us, really. We might be able to keep hold of a small corner of it for a while, but sooner or later (usually sooner) something or someone messes up our orderly world.
Another problem with the illusion of control is that Caregivers often become depressed themselves, feeling guilty that they are not doing enough. If they were doing enough their Loved Ones would get better, they think, or more importantly, they feel. There are frantic attempts to make things perfect for their Loved Ones so that they will be completely insulated from the consequences of the disease. Sometimes Loved Ones, especially if they are in denial about their disease, feed into the expectations that their Caregivers should make their world work again. I remember how often Mary Ann, when asked about meal preparation, would say without hesitation, “They won’t let me in the kitchen.” I, her Caregiver, was “they.”
The truth is, Caregivers don’t own responsibility for their Loved One’s sickness. Caregivers cannot fix what they have no power to control. Caregivers can be empathetic and caring and loving and sensitive to the needs of their Loved Ones. Caregivers can be Advocates for their Loved Ones, especially with all those who are responsible for their medical care. Caregivers can and should learn as much as possible about the disease so that they can be more effective as Advocates. Caregivers cannot remove the consequences of the progression of the disease, or the debilitating side effects that come from the medications or treatments. That is just the way it is. Knowing that can eliminate a lot of wasted energy. Knowing that can reduce some of the frustration, some of the feelings of failure, feelings of guilt that plague most Caregivers.
In the moments of pain at what Mary Ann suffered, it helps to remember that I couldn’t fix her. If I could have made her better, I would have. I didn’t have the power to stop the ravages of the Parkinson’s Disease and Parkinson’s Disease Dementia. She often refused to accept that there were consequences to the Disease, consequences that neither of us could remove. While at times that caused problems in trying to keep her safe and secure from hurting herself, it was her way of coping with an impossible situation. She needed to deny part of her reality to keep from crumbling under the weight of it.
Her coping mechanisms worked. She never crumbled, not even close. Spending 24/7 with someone results in getting to know one another very intimately. It would be virtually impossible to keep up some sort of false front. While we went toe to toe sometimes as we confronted a difficulty of substantial proportions, she never faltered. She moved through whatever it was, no matter how impossible, with a calm spirit, like a ship securely anchored in a violent storm. The times that was not so happened in hospital stays. It is why we both hated them so. A sort of psychosis would emerge as the days went by. In the last months, the flair ups of the Lewy Body Dementia took her to very strange places where the equilibrium was inaccessible.
While I did not have the power to fix her, I did what I had the power to do. She remained strong, and when the time came, she left here to find healing and wholeness. This is one of those times I lament that tears do not easily come. They lay just behind my eyes. It is a sadness that I cherish.