After my mother died at age 96, I was asked to give a talk at Dartmouth-Hitchcock, New Hampshire's only academic medical center. I had only recently moved to New Jersey from New Hampshire and hence, I chose not to do this. However, I offered to write something that the administrator of the memory unit where my mother had once lived (it was within a continuing care retirement community, Kendal-at-Hanover) could read on my behalf if that was acceptable. It was, and so I ended up writing a piece for that conference. More recently, though, I revised that piece and came up with what is posted below. Since
I suspect other adult children of elderly parents with some form of denentia could face what I did, but might not find the staff always as caring or compassionate as the staff at this facility, I thought it might be helpful to post this. And by the way, I believe that if my mother could know what I've done, she'd certainly approve. She was a very special lady--a very kind and generous soul.
Staff members from Kendal, the continuing care retirement where my ninety-three-year-old mother had lived, had certainly phoned me unexpectedly before. But the thing is, most of those calls had been about my mother falling off of a bed, not into one with a man I’d never met.
The social worker assured me that the staff of the memory unit, to which my mother had recently moved from assisted living, had no problems with her behavior. “I just want to discuss the measures we intend to take to ensure your mother and this man enjoy the type of respect and privacy they likely desire but, because of their mutual problems, might be unable to request,” she said.
“That sounds great,” I mumbled. I hardly knew what else to say. My mother was ninety-three –years –old, after all. The man involved, I learned, was ten years her junior.
The social worker never raised the issue if such a relationship should be encouraged or discouraged in the first place. Was this because she knew I was a clinical social worker and hence, assumed I’d be immediately accepting of whatever had come to pass? Or, was this how she would have addressed the daughter of any resident in the memory unit who’d been found in bed with another resident?
I didn’t ask. I was willing to accept this social worker’s guidance on this one. It was hardly my area of expertise, and I’d been pushed outside of my comfort zone.
And so began a new type of relationship with my mother—one I’d never anticipated, needless to say. See, following my father’s death almost six years earlier, my mother had told me that while some widowed people in their community became romantically involved and even married, she had no interest in walking down that pathway.
Dementia and this man would change all that.
The two of them were ambulatory and capable of at least some level of communication when my mother and Jim became an item. However, because my mother had only recently entered this unit, whereas Jim had required this level of care for almost two and a half years, my mother’s communication skills were superior to not only his, but to probably all other residents on the unit. However, despite the fact she seemed more reality-based than those in her midst, my mother still failed to understand the nature of their problems. Oh, and this was despite the fact she’d once served this group of people as a volunteer.
“The men and women here don’t have very good social skills,” my mother told me more than once. However, I don’t remember her making such a comment about Jim despite the fact I found him to be uncommunicative.
Many times I’d enter her large room—it had both a living room and a bedroom area—to discover photographs bearing faces I did not recognize. They’d be strewn about on the sofa and chairs.
“Mom, whose photographs are these?” I’d ask.
“Oh, they’re Jim’s,” she’d answer, and then proceed to tell me something about his family or his past. So, it appeared they did have some conversations, but not to the degree she would have preferred.
Indeed, she told me several times about how they’d sit together in his room while he watched sports on television, but he’d not say anything to her. She seemed to be confused as to why this would be his response. Also, she didn’t understand why he insisted upon watching Red Sox games when she’d have preferred to view tennis and golf matches. But then, after telling me such things, she’d invariably conclude, “But this is still preferable to being alone.”
The good news was, Jim did seem content to hold her hand and walk the unit’s corridors with her. He also seemed to always have a smile atop his lips as he sat opposite her at the breakfast, lunch, or dinner table. Furthermore, it would be there again when he sat down beside her at unit activities. So, even though my mother might have wished for more, these things seemed to be enough to cause her to value this relationship immensely.
And what about me? Well, I wanted to be happy for my mother, but sometimes when I felt as if I’d lost my position as the most significant person in her life, it did bother me. Perhaps this was because I’d disrupted my life to be present for her as she entered the twilight hours of her own life?
In truth, when I knew my father was about to depart this world, I’d made the decision to leave the life I’d crafted for myself in Italy. Yes, I’d move to New Hampshire, the place to which my parents had retired after a lifetime spent in central New Jersey, to be near her. Certainly, this was not my first choice as a place to live—and especially not as a divorced childless woman in my early fifties who also had no other immediate family. (My brother and his children had been killed in a house fire decades earlier.) But I moved to that New England state anyway—as opposed to returning to Dallas, the place where I’d lived for fifteen years prior to moving to northern Italy.
I must admit, my mother had never asked me to do this. In fact, my parents had chosen to move into a continuing care retirement community in large part so I wouldn’t feel compelled to change my life to attend to their changing needs. No, this was something I wanted to do for her, and particularly because I wanted to show my gratitude for what she and my father had done for me. After all, they’d rescued me from New Jersey’s foster care system just two weeks short of my sixth birthday. Yes, I knew how different my life might have been if this forty-year-old-woman and thirty-eight-year-old man hadn’t been brave enough to take on a child already essentially shaped by both the genes and child-rearing practices of others. Oh, and this was after they’d already lived as a childless couple for nine years.
For this reason primarily, then, I strove to accept Jim’s presence in my mother’s life. Well, and it was obvious she was feeling happier and more at peace since meeting him. In recent times, things had been difficult for my mother. She’d initially found it upsetting to be forced to move from her independent living apartment into assisted living. But then, only nine months after that, she had to be moved into the memory unit.
My mother had still had enough awareness at the time to recognize some of the losses she’d be sustaining. For example, she would no longer be able to join others on the golf course. But there were also the long-time friends who’d now be hesitant to visit her. With regard to the latter, I had always hoped this would never happen. But my mother anticipated this turn of events. “Oh, they had to watch their husbands slip into people they hardly knew. They don’t want to watch the same thing happen to me,” she told me one day when I’d broached this type of conversation.
Not surprisingly, she missed seeing them nonetheless. However, this became less the case after she and Jim became a couple.
Sadly, there were downsides to this relationship, too. In fact, I sometimes felt that I was dealing with a teenage girl who was always worried that someone might seduce her new boyfriend. And in truth, my mother was convinced that another woman on the unit was trying to move in on her man—a woman who was a former neighbor and someone my mother had actually once liked. But of course, at this point neither remembered the other, and so my mother would become angry regarding some of the actions this woman took. On the other hand, the staff and I perceived them as perfectly innocent. Fortunately, though, because the staff members were sensitive to the distress my mother experienced wherever this woman was anywhere nearby, they took to ensuring she was always seated quite a distance from where my mother and Jim sat.
There was another woman my mother came to be concerned about, too. Since this woman lived across the hall from Jim, she had to walk in the same direction as him to get to her room. Sadly, mu mother failed to grasp this, and so she was troubled as well by this woman’s innocent actions.
Needless to say, it saddened me to observe my mother’s distress at such times. I’d try to console or comfort her as best I could. And fortunately for both her and me, the unit administrator might do the same when I wasn’t present.
Perhaps because of my mother’s concerns about these other women, she began to talk about wanting to marry Jim. Because of such remarks on her part, as well as the fact I had the legal right to make decisions on her behalf, I chose to meet privately with the unit administrator.
“I don’t know that he wants to get married,” I said. “But even if he does, I’m not about to let this happen. There would be too many legal and financial ramifications.”
“Perhaps if she keeps pushing for this, we could arrange a pretend wedding,” the administrator replied.
Fortunately, soon after that, my mother stopped talking about marriage. I was relieved because, in truth, I hadn’t been totally comfortable with the administrator’s suggestion.
Approximately fourteen months after my mother and Jim had first met, he developed significant health issues. As a result, he had to be transferred to the community’s nursing home unit.
The administrator of the memory unit was kind and considerate enough to accompany my mother to that unit so she was able to visit Jim during the few days that elapsed before his death. In fact, they were waiting outside his door to visit when a health care professional stepped out of the room and informed them both that Jim had just died.
Jin’s death presented a new situation for which I felt ill-equipped. See, I was concerned about how my mother might react to his death—both in the short-term as well as the long-term. I wanted to support her and demonstrate that I appreciated the fact his death was a significant loss for her. However, did I offer to take her to the funeral, or just give her some glowers, a sympathy card, and let her talk about him and their relationship as much as she needed to do in the weeks to come? Also, what action should I take with regard to Jim’s daughter, a woman near my own age whom I’d met once? It had been at a celebration of the coming Thanksgiving holiday held on the memory unit. We had both sat their stiffly—along with her adolescent son—struggling to make small talk while the two of them sat there seemingly oblivious to us.
I arranged for another private meeting with the unit administrator. I slid onto a chair by her desk and asked, “Should I take my mother to the funeral?”
“Oh, definitely not,” she replied with a look of horror now stretched across her face. “The family would be so uncomfortable.”
Shortly thereafter, the staff gave me a framed picture of Jim. I placed it on my mother’s bedside table. I could do this because there was no picture of my father perched there. But then, she seemed to have forgotten that she’d ever had a husband.
She appeared to find this photograph of Jim comforting.
In those days following his death, my mother would often speak of Jim. She would tell me what a fine person he’d been, as well as comment on the pleasure he’d delivered into her life. But as the days turned into weeks, and the weeks turned into months, it appeared that she’d forgotten him just as she’d forgotten that she’d once had a husband named Clifton whom she’d always called Clif.
As my mother’s dementia and other health issues worsened, it became necessary to move her into the nursing home unit. In time, she became non-ambulatory. Interestingly enough, it was at this point in her journey that she seemed to remember deceased family members—my father, her parents, and her three siblings. Perhaps, then, it’s not surprising that one day when I wanted to push her around the entire facility in her wheelchair, she appeared reticent to leave the unit.
“What’s the problem, Mom?” I said.
“What if Clif comes to visit me?” she answered. “He’ll be upset when he can’t find me.”
“I’ll alert the nurses,” I answered “Then, if he should come by to visit, they can tell him you’ll be back shortly.”
There had been a time when I'd tried to keep my mother reality-based. In time, though, I saw how upsetting it was to her to be told that someone she thought was alive was actually dead. And so, since the nursing station was in her line of vision, I walked to it and exchanged a few pleasantries with the nurses sitting there completing paperwork. By the time I returned, my mother was happy to proceed with that week’s tour of her community.
As death’s arrival seemed ever and ever closer, my mother spoke more often about being visited by my father, her parents, and her siblings. She never mentioned a visit by Jim, however.
My mother lived for over two more years following Jim’s death. She suffered a more severe decline than some experience before death takes them away. As a result, there were many days when I sat beside her and observed a once vibrant woman, someone who’d truly loved life, become reshaped into a person with little more capacity than that of an infant. As I sat there and watched her, I found myself feeling more and more gratitude for her relationship with Jim.
Sure, there had been times when I might have preferred to have taken her out to lunch versus sit there in the unit and have lunch with the two of them—while he invariably smiled, but otherwise sat there silently. I didn’t always appreciate him hanging about her room, again saying nothing, when I had something I needed to discuss with her. And yes, it was also annoying the way he’d pull books off of the bookshelf and leave them covering both the sofa and nearby chairs. Nonetheless, I would remember those months of joy he’d provided my mother despite his limitations—that short period before she moved farther down a pathway we’d both prayed she’d never be forced to take.
Yes indeed, all-in-all their relationship had been a good thing. I was glad I'd been present to observe this love story which emerged and flourished despite the fact dementia had essentially stripped both people of their former identities. And yet, it was as if both of them could still detect what had once been the true essence of the other.