By Rev. Dr. Peter Tremain

When taking care of a loved one who is declining, there sometimes comes a point at which there is a transition from husband or wife, mother or father, son or daughter, to “patient.” A sort of clinical distance emerges and the tasks are carefully, responsibly, and compassionately done with gentle concern. That clinical distance helps the caregiver keep from getting lost in the emotions, disabled by his/her own feelings.

Up to the very end, I never ceased to be her husband first and foremost. There was never any clinical distance. Mary Ann was never a patient to me with her Parkinson’s. She was my wife. The way I kept from being disabled by my feelings was to live in what I have recently described as intentional denial. There was never any waning of the intimate romantic feelings as she became more disabled. In fact, if anything, they grew stronger as our battle with the disease got tougher. Certainly we had all the usual times of irritation and snipping at one another. That comes with longevity in a marriage. It means nothing other than that the relationship is secure enough to provide the freedom to be grumpy with one another at times.

What I will describe next will sound as if it is at odds with what I just said in the previous paragraphs. What I said above and what I say next are both the truth, even if it seems impossible for that to be so.

After I retired to take care of Mary Ann, I struggled to find a way to feel a sense of accomplishment each day. When I was working, there were all sorts of external signs that I was doing something worth doing, something that had meaning and purpose—a job. When I retired, everything that had confirmed that I had a job ceased. One day I had a job as the senior pastor of a large congregation with a staff for which I was responsible. The next day, I was at home with Mary Ann, helping her just as I had been the time I was at home and not at work before I retired.

There was no tangible evidence that I had worth. Constant care was needed, so I was working more and harder than when I was actively serving the parish. There was no paycheck, nor were there people telling me that I was doing a good job. It took some months and some mental gymnastics for me to realize that what I was doing with Mary Ann was not only as important but more important than what I had been doing when I was working for pay.

The result of that realization was that the caregiving I was doing became my job. I came to treat it as an important job, each task needing to be done well, taking all the attention and skill I could muster. I needed to become expert at it, doing it in a way that reflected back to me a sense of accomplishment.

Caring for Mary Ann became my job. When that transition came, I felt as if I was freely choosing the job. There was no reason for resentment since what I was doing was my profession.

Caring for Mary Ann became my job, but Mary Ann never ceased to be or to feel like my wife. I was her husband, and she was my wife. I do not deny that what I have just said makes very little sense. All I can say is that is exactly the way I felt. For the last two years especially, when I retired to do full-time care, Mary Ann was my wife and caring for her was
my career.

I can’t explain to you how it worked, why it worked; it just did. I am grateful that it did. Mary Ann never had to suffer the indignity of being my patient. I didn’t have to give her up until she died. I got to have my beloved wife with me every minute of our marriage. The result of doing it that way meant that when she died, it hit very hard. We did not ease into it. I did not get accustomed to her leaving before she actually left. It has been excruciatingly painful, but I am not sorry that we did it that way. Even knowing the depth of the pain, I would do it no differently were we to have to do it again (God Forbid!!!) Yes, I would try to be kinder more of the time, more understanding, less grumpy, more affectionate, but I would not change the way we approached our relationship.

I was her husband, and I was her caregiver. She was my wife and taking care of her was my job. While thinking about it that way helped me feel worthwhile, the truth is, caring for her was exactly what it meant to be her husband. We loved each other romantically (in spirit), in words, and in actions. As devastating as it has been to lose her from here, I feel full of deep joy that we got to experience that kind of love.

The Rev. Dr. Peter Tremain is a retired parish pastor and currently travels the world as a digital nomad. You can find his current writing at PeterTremain.substack.com.