Rebellious Thoughts of a Woman

Wakodahatchee Wetlands

JOHN*. MOVE. NOW. NO. JOHN. JOHN. STOP. JOHN. STOP. NO. MOVE.

That was the background “conversation” at the doctor’s office the other day when I went for my annual. One old White woman in a wheelchair, a late middle-aged White man pushing her, and her young Black aide. I did a double-take at them when I heard the man say something to the receptionist about his wife because she looked much older than him, her husband, who I thought was her son, a very good son.

When I was brought back to an examining room, the nurse and I could still hear her shouting. I said something about how hard it is to hear the woman yelling at her husband so harshly. The nurse said that the woman hadn’t always been like that, that she had been a lovely person. Apparently, the anger is an expression of her dementia. It was upsetting to be witness to such an open display of what would normally be hidden in one’s home and to see what dementia can do to a person, that memory loss is also a loss of self.

Up until COVID put a stop to visits, I was a hospice volunteer for about a year. During, that time, I visited a few patients with dementia. Since some of them lived in a memory care unit in a senior living community, I saw other people with dementia when I visited them. In all that time, I hadn’t seen anyone so hostile, though there had been glimmers of insistence and impatience. Hearing her was scarier than when one woman called me “Mother.” If the harshness is not uncommon, then perhaps the angry patients there were in their rooms or medicated or taken care of differently.

Weekly for most of that year, I visited a man whose wife visited him daily. She used my weekly visits as a little break for herself—she would go an hour later to be with him. She was watchful over the aides and took care of him like a mother hen. The situation, his dementia and other health issues, took a heavy toll on her, even with the help he received. It was so hard to see that everything she did was from her love of him, while he was sunk into his own world. I couldn’t imagine how the husband in the doctor’s office was managing when it seemed that it was just him and one aide. Not just the work of taking care of her physically, but the drain on him to care for this woman who had taken over his wife. How does a person keep going, keep giving from love, when the spousal relationship no longer exists? Is the connection at the soul-level or the commitment and vows level, so that the nature of the relationship no longer matters?

One of the things that I learned that year of volunteering was how difficult it is for a spouse or child to care for a loved one who is sick, especially with dementia. It was relentless, harder than caring for an infant. There is no positive trajectory to expect or a break in demands when independence comes, and, perhaps, too, it is hard knowing that all the love and care you give will be unrequited. Not that we do things to be appreciated, but this is a truly selfless love, where your giving takes so much from you—even if you don’t think of it that way. There are so many things that can push a person into being fully committed to another to practically blanking of the self, even if it is temporary. Maybe my thoughts say more about my fears, than they do about this man and his patience.

Perhaps I’m focusing on this because it’s a fear that naturally comes when a parent is in their 80s. My mother’s memory and sense of self are firmly intact. Sure, she forgot what time her haircut was a few times, but I would forget that, too, if I didn’t put it into my calendar. Knowing that she took care of her mother and my father when they were sick at the end of their lives and that I said I would do the same for her scares me. Living with her, seeing this woman who would walk at a New York City pace now hesitant to walk from the living room to the kitchen concerns me, makes me anxious about the future. We each have tests, a lifetime of tests. Some we pass; some confuse us; some we learn from the hard way; and some we anticipate or fear, but hope that we won’t disappoint ourselves and those we love.

* Not his real name.  

M, my first hospice patient, who I started visiting in June 2018, passed away in October. Expected, but still difficult. I was grateful to have been a part of her life and the lives of those who loved her and cared for her, so I have not wavered in my commitment to continue as a hospice volunteer.

She had prepared me to see her death as the natural progression of her life through her gradual decline to the point where death was, clearly, the next step. Still, to lose someone, even someone I just met knowing that death is the expectation, strains the heart.

When I first visited M, she sat in her wheel chair and I sat on an armchair next to her. I read to her. No, I tried to read to her. I was so pleased at the idea of going beyond the Memory Bag, which I got at hospice volunteer training, thinking that this could be my way to connect with her. Clearly, I was anxious about how my visit would go. I came with a feeling of expectant satisfaction to sit there and share with her a book that my daughter gave to me. It didn’t take long, though, to realize that she wasn’t interested in hearing the story, in sitting passively, in trying to listen to my voice speaking words, phrases, sentences, that, I would quickly learn, had lost their value to her. She wanted to hold the book, to look at the pages, the words, the images. She read aloud a few words, then looked at the small drawings, pointing to them, trying to say something about them. My response was to name things. Starfish. Dolphin. Seashell. It’s a book, so I thought words were the keys. But she had Alzheimer’s, so I couldn’t know what she was connecting to, trying to share with me. I did sense that nodding and agreeing with what I thought she was saying wasn’t a bad way to go.  

At that moment I realized that I was not there to do something or provide something, I was there to be: to be with her, as she needed me to be, as I tried to intuit. This insight helped me, and I hope her and future people I visit, understand that at our core we are people connecting to each other through our hearts. This was a relationship where there were no parameters to meet, it was simply two people sitting side by side.

It was for me to follow her lead. To me the book had contained a story to tell, while to her it was, honestly, I’m not sure. Nevertheless, it was something that I could share with her and that’s the idea, isn’t it? She was going to experience it her way, not the way I had intended, but my giving up control to her was key, both to appreciate her and to appreciate my role. Her determination, something I would learn more about at her memorial service, was obvious from that first visit. A personality, as changed as it may be from dementia, still contains the essence of that person.

The last time I visited her she slept in her bed the hour-and-a-half of my visit. I sat on a chair next to her and read the last two chapters of the book I brought on my first visit: Grayson, the story of a woman who helps a baby whale and his mother reunite in the waters off Seal Beach, California. This time, reading it soothed me and kept me from focusing on how she had changed. She had gotten so thin, just a skeleton. She didn’t look at me with her charming smile that was as much eyes as mouth; she lay there, mouth open, unmoving, I even checked a few times to see that her blanket rose and fell. I kept focused on the words and the story, because they soothed me and I hoped they did her, somewhere in her sleep.

The reading was a joyful recollection of being witness to the effervescence of dolphins swimming and playing together, and then experiencing the moving reunion of a mother whale and her child. It was stunningly beautiful in its simplicity, in its appreciation and celebration of life. While I wasn’t able to engage M at this moment, I was able to present myself to her, one last time, with words and a tone that, I hope, reflected the love that she had shared with the people in her life—and got back from them—us.

All around me people are holding hands. Hand covering hand. Thumb caressing back of hand. Fingers soothing fingers. The gentlest of here I am gestures continually, lovingly, regretfully, thankfully. The activity room in a memory care facility. Husbands and wives. Non-patients soothing patients, their spouses.

Watching them I can imagine scenes from other, healthier, times on a drive, at a celebration, on a walk, when the fingers of both were grasped in love and unity, while now they are the hands of the caregiver and the care-receiver.

It is both a sad and joyful scene. This is love as an expression of concern and history, not passion. It is not the necessary culmination of a lifetime spent together; it is what may happen when one mind remains intact and the other wanders, then goes beyond reach.

The man I visit has dementia; my visits often include talking to his wife who visits him daily. She includes him in our conversations. He sits in his wheelchair, occasionally responding. This is and isn’t the man she has loved for decades. This love is a beautiful, painful thing. For me, the volunteer who visits them, who did not know him before, this is who he is; I am not overwhelmed with the imposition of memory on present moment.

Children who are my age, the middle-aged children of these parents who they have and have not lost, look stricken. They cringe at the parent who is in the baby phase, at the parent who may or may not respond to them, at the parent who is so changed, who needs to be in his facility. 

My mother, who lives in Florida, is on a cruise.

In two weeks, it is the yahrzeit (anniversary) of my father’s death nine years ago.

Tomorrow I will make my weekly visit to my patient. It feels like visiting a relative. I enjoy having an older person to visit, to spend time with. Being too, even for an hour, part of a community that lives within the walls of the facility and their minds. So much kindness, gentleness, but remoteness and pain too. Eyes looking: what do they see? Eyes closed: what do they see?

So much of my time is spent with the young, the anxious to go do be, but in these visits, I watch and share. I surprise myself that this can be enough. It is a break from my apartment where alone I live the life I have created for myself. Perhaps these visits help me see that it is an illusion that I am alone. Other people are in my thoughts and I am in theirs. We are connected, holding hands and memories, threads of lives interweaving even as they unravel.