by Ginnie Horst Burkholder
It seems like a lifetime ago that we were first confronted with the words “Lewy body.” At that moment, we began the long road to acceptance. At times the journey has been daunting. Chronicled here are some of the thoughts along the way.
This morning Nelson asked if I was done with my cereal dish. I was so pleased that he was helping me clear the table — until he stood at the microwave ready to put the empty dish in there. How can one ever heal when the loss multiplies in front of your face? There is an endless letting go, an endless sadness, an endless mourning. And it wears down the spirit and eats away at hope. There are times when I can’t wait for the joy that is supposed to come in the morning.
How is it that he can turn the heater off when I am using it, but not turn off the lights after using them? How is it that he can pick a piece of lint from my clothes, but he cannot see that the toilet needs flushing? How is it that he can clear away the dish that I am still using, but not push in his chair? Where is the sense of it?
The caregiver of a spouse with dementia must give up all rights to reason in the relationship. There is no room for reasonable. There is only “this is the way it is and will be.”
“Choose to fight it,” and “choose to accept it.” I go in and out of those two doors over and over again. And there are so many doors like them. There are doors that say, “why me?” and “why not me?” There is the door that reads, “I can’t do this any more,” and the other one that says, “I can and will do this.” The doors are always open. I want to close the one that says, “I can’t accept this,” and walk permanently through the “I will accept this” door. But about the time I think I have done that, I am thrown back into anger and pain and grief, and am fighting my way back to the door of “acceptance.”
It will never be my turn to be the one cared for in this relationship. It will never be my turn to let him cover the bases, fix the broken, cover my back, get our ducks in a row. Never. The door that says “my turn” is permanently closed.
The triggers are endless. A spousal caregiver has no shortage of triggers to work on their own issues. There is no counting on memory or comprehension to navigate a problem, no hope that the person beside you can pick up and carry life while you relax. It’s not going to happen. The caregiver carries all his or her own baggage, and then must accept all of the spouse’s baggage without qualification. If you don’t, you lose it. Today I lost it, and now it is time to forgive myself and move on.
This morning I awoke thinking about how the disease is like a kidnapper. It carries you off to a place where no one would go by choice. You feel violated and helpless, and you just want to go home, but home is not an option. Something bigger and more powerful is making the decisions for you. You are not consulted. You have limited, few, or no choices. You go along. In the case of the disease, you go along out of commitment. You go out of love that takes on a different wardrobe than the one it wore when you were both healthy. You give yourself what you need when you can in order to continue in this relationship where love is costly.
Acceptance is like a greased watermelon. Just when I think I have a good hold, it slides to the floor and lies at my feet — messy, undone, and sweet but not very tempting. Do I want to try again? Or shall I give up? Somehow I keep coming back to that endless supply of greased watermelons and trying once more to hang on to the wholeness and the sweetness of it.
You learn eventually. As a spousal caregiver you must change, or you will be filled with constant stress. So you give up your right to this or your preference for that, and you accommodate the needs of the person you care for. And if you are wise, you find other places and times to assert your own needs and wants.
The moments and hours of acceptance are there. They are noteworthy. They are critical. They are undocumented. When I am accepting, I have no need to process the emotion. I do not write about acceptance. I just feel it, savor and enjoy it.
This morning Nelson said to me, “You take such good care of me.” He acknowledged it, and I loved him for it in that moment without the burden of regrets and heaviness. We have come a long, long way.
© 2007 Ginnie Horst Burkholder
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