I Never Thought I Could Be a Caregiver

We had just returned from the doctor’s office where we’d finally learned the diagnosis. In shock from hearing the words, “Early Onset Parkinson’s Disease,” we hardly knew what to say to each other.

The house felt stuffy and closed in, Parkinson’s hanging over us like a dead weight. More to lift the weight than for any other reason I could discern, my husband walked over to the porch window and began ruminating about the new bird’s nest that had shown up there that morning being a sign that change was coming to our lives.

Many people, when they think of Parkinson’s, think of tremors and uncontrollable movement. My husband’s Parkinson’s however, manifested in a poverty of movement. I already had to help him perform the personal tasks that required repetitive motion or spontaneous action such as combing his hair, buttoning his shirts, or even washing himself in the shower, so his poetic musings about the bird’s nest sounded ridiculous to me. Under the circumstances, the only thing I could think about was how I was going to manage everything.

I loved my husband and didn’t want him to suffer but I was conflicted by doubt. How could I do it all? How could I provide him with the amount of personal care I was already providing, plus meet the demands of the additional care he would need, and do all this while I was also responsible for everything else?

There was no family living nearby to help, and we didn’t have the resources to hire professionals. I was terrified of what our future could bring — terrified and overwhelmed.

Of course, it’s not a good idea to look that far ahead in life, especially a life with Parkinson’s disease in it, but that wasn’t advice I was following. While my husband was talking about birds’ nests — which I basically considered denial of his illness — I was having anxiety.

A crisis came for me one morning, as my husband and I were standing in the bathroom together while I combed his long hair. He had a ponytail, and I was wondering when I would have the time to shampoo it.

I stood with my hands carefully doing the untangling when I glanced into the mirror. In that moment the ghost of my mothering days rushed back to me. I’d had three children, and almost every morning before school, I’d stood just like this, gently working the knots out of their hair. I’d done it naturally then, as their mother.

With a shock, I realized that I had stopped seeing myself as my husband’s wife/sweetheart/lover and saw myself instead as his mother/caregiver/nurse. I no longer had erotic or sexy feelings toward him. Instead, I felt maternal feelings for him and what was worse, I felt as if sexual intimacy risked becoming some sort of virtual incest.

A sense of shame and guilt washed over me; shame for not wanting to lose my identity as a sexual being, and guilt for thinking of my sexuality in the first place.

After all, he was the one who was losing everything. He already looked smaller to me, shrunken even. His hands, frozen in place, seemed incapable of doing his bidding and he could barely walk down the hall in our house without holding onto something.