by Ginnie Horst Burkholder
A friend whose husband died of complications from Lewy body disease wrote to tell me about the beautiful day and the perfect ceremony that came together when they interred her husband's ashes. I thought about all the goodbyes that we caregivers of spouses with LBD have had to say.
Before I knew Nelson had a disease, we were beginning to struggle in our relationship. Why did we argue so often? Why did we feel so distant? Why couldn't we communicate effectively? Something was wrong, but I couldn't uncover what it was.
When Nelson was struggling with his teaching job, I began to communicate with his principal. She affirmed that there were problems that had to be resolved in order for him to return the following year. I think it was then that I said my first goodbye to the competent man I had married. It was then I began consciously to function for him.
A 'killing goodbye'
We both resisted that goodbye. He couldn't see why he shouldn't go back to teaching. He had to say the first of many goodbyes; goodbye to making his own decisions. I had to say the first of many goodbyes to the capable Nelson I loved. I had to begin to override his decisions.
It was a killing goodbye. I loved his solidness. I loved his confidence, his comfort with himself and his choices. I had to take over that part of him, and it put a wedge between us. He didn’t want to give me the job. I didn’t want to take it. But I did. I said goodbye to my dependence on his good judgment. I began the perpetual goodbye that happens when you watch someone you love shrink into more and more incapacity.
After Nelson’s diagnosis of Lewy body, I knew there would never be a recovery. We could help him compensate for a while, have him write things down, use a datebook, but gradually he would lose the reliability of his memory and observation. I could see the goodbyes coming. He would forget to look at his datebook, and it would be discarded. He wouldn’t remember what he did last week, and then yesterday, and then an hour ago. Goodbyes piled up in front and behind.
When his driving became erratic, again I had to step in and override his judgment. It was the beginning of many goodbyes - this time to our division of labor and being able to relax while someone else took charge. That goodbye spread slowly into every function and responsibility in our lives. Goodbye to counting on him to help with the checkbook, house maintenance, car maintenance, and lawn care. Eventually even taking out the garbage was removed from the list. Then I had to stop asking him to bring me something from the next room. Goodbye. The list of things he could do to help me diminished to nothing. Next we said goodbye to the personal care items he could no longer do for himself.
What we do in order to cope
Early on, communication became a monumental task. He might say, “Bring me a chair,” when he meant, “Bring me a stool.” When I brought the chair, he would be frustrated and repeat the same misleading request. It strangled our easy way of living together. Goodbye. We distanced from each other in order to cope. Goodbye. Then we would come back together and try again with similar results.
His ability to mesmerize others with funny stories disappeared. He’d start the story and forget an important detail, but not realize it. He’d laugh, while we, his family or friends, would politely laugh along to cover up our puzzlement and the awful reality of another goodbye we saw unfolding.
Problem-solving escaped him, and when he tried to hang on to that ability, craziness happened. The shelves he tried to build ran cattywampus. The mower he tried to fix ended up more damaged after his efforts. He would put gas in the car with the engine running. Goodbye, goodbye, goodbye.
When he couldn’t organize his medications, I began to do it. Goodbye to the Nelson who could do anything he set his mind to. Then he couldn’t remember to take the medications. So I gave them to him and watched to make sure he swallowed. After more years, I began to put them in his mouth and hold the cup for him. Another goodbye is always just around the corner. And when it comes, another shred of memory, competency, reliability, or capability that has been guarded viciously, has to be relinquished. Yet another item falls irretrievably onto the pile of losses. Goodbye.
The new 'growing-down'
We spousal caregivers must constantly adjust to the new growing-down spouse. While we are trying to adjust to each goodbye, the disease teases us in and out of higher and lower function. These on-again, off-again goodbyes take their toll on both partners. The spouse with Lewy body can shut down or fight to hold on. The stress on the caregiver takes its toll – manifesting health problems, depression, and loneliness.
Somewhere along the way we realize that we have neither the perks of marriage nor the perks of being single. We do, however, have the responsibilities of both. Even more confusing is that we are now the parent of our spouse. We cannot fix this with pills or panaceas. All these confusing new roles require emotional gymnastics in order to cope, and we have to say goodbye to every expectation.
I suspect my friend’s goodbye on that beautiful day will not be her last. But I would be surprised if she told me it was the hardest. People tell me I’m strong. Saying goodbye for 20 years either makes you tough or it breaks you. But now I am wondering, how many times can you say goodbye without breaking?
© 2010 Ginnie Horst Burkholder
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