What is different between caring for a parent and caring for a spouse?

Sometime during the late summer or early fall of 1993, I received a call from my mother. Calls like this one were always from my mother, not my father. In our conversation, she brought up the topic of their planning ahead and thinking of moving out of West Palm Beach to some place that would be closer to either my brother or me. We didn’t settle anything in that conversation, but after that I talked with Kate and then Larry who talked with his wife. Together we decided that being near to us would be a good option, and over Memorial Day weekend in 1994, I flew to West Palm Beach and drove them to Knoxville. The movers delivered their furniture the following day.

Although I knew that my dad had had several medical problems over the years, I didn’t think that might be the motivation for their move. I still don’t know. I do know that three or four years later, the social worker at their gerontological practice informed us that Mom had dementia. She approached the subject with us very delicately, but we already knew. Exactly when we became aware I am not sure. It wasn’t right away. Now that I have had a little more experience with dementia, I feel sure that she was showing signs of dementia before their move. She died in 2002, four or five years after the social worker gave us the news.

I spent a significant amount of time with my parents immediately after they arrived in Knoxville and through her death. After her diagnosis, I was particularly attentive to helping Dad to the extent I was able. I was still working and traveling, but I was with them a good bit. During the last year or two of Mom’s life, I frequently took them an evening meal. Larry and I worked with the social worker to design a plan for their care as Mom’s condition worsened. Dad was never receptive to having anyone come in to help. Neither was he interested in moving to an assisted living facility. He didn’t have the financial resources to pay for it, but Larry and I were already subsidizing their income significantly and would have been willing to pay for it.

Looking back, I am amazed that Dad was able to handle her care so well. I never heard him complain. He did many things to keep her active. They delivered Meals on Wheels. They volunteered at a local senior center. They attended a local theater. They made a lot of friends. When she died at home, he was turning her every two hours. Fortunately, that lasted only a day or two.

I thought I understood exactly what he was going through as her caregiver. Since Kate’s diagnosis, I feel I really understood very little. I also feel quite different about Kate than I did about my mother. I loved Mom, but I never felt as troubled or sad as I have felt about Kate. I have also read a lot about other caregivers who cared for their parents. As a result, I have made two observations. First, I realize how easy it is for sons and daughters to miss the many signs of dementia. Second, I am often surprised at how long it takes for us to take action. These go hand in hand. Unless we are living with our parents, we don’t fully grasp the symptoms of dementia.

I don’t believe that I have felt differently about Kate’s Alzheimer’s than that of my mother’s because I loved Mom any less. I believe it’s because sons and daughters whose parent is not living with them never have sufficient information to fully understand what is happening. It is easy to miss. Many of the people who have known Kate have been surprised to know that she has Alzheimer’s as well as how far along she is. That is because they don’t have the same opportunity to observe all of the symptoms. They see her doing much better than they can imagine. They generally imagine the latter stages of dementia.  They don’t understand how much time there can be between the first signs and the state of a person at the end. In addition, they don’t understand that someone with dementia still retains many capabilities even as they lose others.

Of course, there is something more that makes me respond differently to Kate than to my mom. That’s the nature of the relationship itself. At least in successful marriages, the two partners live such intertwined lives that in a way each becomes a part of the other. At lunch on Tuesday, I noticed a “Yin Yang” tattoo on the arm of the hostess. I pointed it out to Kate. It was no surprise that is something that has faded from her memory. She asked about it, so I pulled up a picture on my phone and then explained the meaning of it. As I did, I thought it applied beautifully to our marriage and that of many other couples as well. In significant ways, we are very different personalities, but we complement each other. We also overlap in other important ways. During the past 55 years, we have shared many highs and lows together. There is no other person with whom I have shared so many significant experiences. In our particular case, that has been especially important in helping us adapt to the changes brought on by Kate’s Alzheimer’s.

It also means that what happens to her also happens to me. When she suffers, I suffer. When her life changes, my life changes. This helps me understand the difference in the way I feel about her compared to the way I felt about my mom. Not living with my mom, I never fully understood what she was experiencing. Perhaps more importantly, the love relationship between a husband and wife is quite a bit different from the love one has for a parent. It isn’t that it’s any less. It’s just different.