(Written on March 21, 2014
Updated on May 6, 2026)
…people suffering from dementia have the ability to feel the emotions of those around them, particularly those who have been closest to them, emotionally. “Reading” another person’s emotional state is a skill learned very early in life and lasts very late in the [dementia] process…
From “No Act of Love is Ever Wasted: The Spirituality of Caring for Persons with Dementia” by Jane Marie Thibault and Richard L. Morgan
Dementia progresses with my mother along its ugly, relentless and excruciatingly slow path. I have to constantly control and bridle my emotions, and most of the time I do. This is especially difficult when she has repeated a comment or question multiple times. This morning (March 21) I had to fight to keep from losing it altogether when I heard her calling at 7:30 and rushed down the stairs to find that she had not made it onto her portable toilet by her bed. I had to spend a half hour cleaning up before I could do any of the morning routines such as taking her blood sugar reading and vitals, and starting breakfast. Some days I just don’t want to bother with breakfast at all. I don’t want to even get up. You want to curse and you do. You want to scream but you stifle it. Control. Acceptance. Resignation. She can’t help it. You take a deep breath and carry on and try to have as normal a day as possible, given the way it started.
All this is heartbreaking on a number of levels. First, when I do lose my temper, she is affected emotionally at the time, even if she might forget everything minutes later. But she’ll say things like, “Am I too much for you?” Or, “I think I need to go into a nursing home.” “No, Mom, you’re staying at home where we (myself and four caregivers) can take care of you. Or, “As long as I’m standing, Mom, I am going to take care of you at home.” A tall order, and big words I realize ruefully as soon as I utter them.
What I am trying to say is that despite her loss of memory and cognitive function, she “reads” my emotional state, senses how tired and frustrated I am, and acts and says things accordingly. Again, it’s heartbreaking. I wish I had more self-control but I say to myself, “I’m getting more patient and resigned to this way of life. Yes, I am.”
It’s been a very slow progression this vascular dementia Mom suffers from. I remember as recently as two years ago she was able to get around so much better, was more mentally alert, and not as fatigued. She didn’t sleep as much.
It’s a wrenching experience to witness this slow decline, week after week and month after month. But she tries so hard to remain engaged with us and the world around her. And this is a good sign, even if it means listening to endless repetitions of questions and comments. Even if some of it is irrational, paranoid or dreamed up out of her disturbed mental state.
Today there were a multitude of cedar waxwings devouring berries in our Savannah holly trees. Mom kept looking out the big floor to ceiling windows in the den and marveling at the sheer number of birds. She looked at the blue sky and commented on how beautiful it was. Then she started asking, as if she really needed to know, where the birds had come from. Of course this was difficult to answer, but I have to assume, on thinking about it later, that they were making their annual migrations north from wintering grounds to the south.
In a very real sense she has regressed back to a more innocent, childlike state, but it’s very difficult for me to fully absorb all this because I am often think of how she once.
There’s a photo of her taken 22 years ago that sits atop a narrow bedroom drawer amid photos of me and my brother and sister when we were children and my father when he was a young man in the late 1940s. There’s a huge amount of pathos in this small family photo collection which she assembled years ago and which she has not touched or altered since. When I’m helping her get in bed at night and she moves the wrong way and cries out in pain, I can’t help but look over to the picture of a glowing and vibrant grandmother of 68 holding her one-year-old granddaughter. I am stunned and saddened by the contrast between the person in this photo and the frail, bent-over and near-helpless mother and grandmother of today.
Yet despite her increasing infirmity, how often do I hear her expressions of love for her children each day, her appreciation for the flowers that we surround her with, and the tiny, everyday miracles of life that she still is very much aware of and understands.
She is my mother. She fed and clothed us when we were children. She nurtured, protected and comforted us when we were growing up. Now, when she needs me, and for as long as I am physically and mentally able, I am there for her, doing my best to make her happy and cheer her up despite all else.
P.S. March 22. Mom had a good night and morning. She feels much better. I am so relieved. I have a reprieve. I am going to go to the gardens and take pictures
Updated, May 5, 2026
To care is the most human of human gestures…In the very act of our caring for another, you and I possess a great treasure. One of the great riches of caregiving is that it embraces something more than simply a focus on cure. Caregiving carries within it an opportunity for inner healing, liberation and transformation for the one being cared for and the one who cares…
Henri Nouwen
In the first half of this essay, I am re-posting the first of many diary entries chronicling my mother’s experience as she declined with vascular dementia and diabetes over a period of seven years. This was a condition which required my full-time caregiving, along with home aides, for those remaining years of her life.
I had moved from my residence of 15 years to Mom’s house in downtown Charleston in 2010 to take care of her and continue working full time as a librarian until I retired from that career in 2017.
Looking back on that time 12 years ago, which seems like eons now, I am briefly updating my life since caregiving. It’s like a classic “before and after.” Life is totally different for me now. I am alone in a quiet apartment rather than constantly alert, busy, and “on call” in a house with my mother and home aides coming and going. I had a sense of purpose, and finally knew what true sacrifice for another meant.
What I wrote back then was a continuously cathartic experience. I didn’t write often on this subject, maybe every other month or so, but when I did, everything just poured out that I had been going through and coping with since the prior entry, often lengthy and intensely emotional. Being a writer, I felt compelled to at least attempt to put into words what it was like back then. Many people related to what I wrote and seemed to be helped by reading about my experiences, recorded in much detail.
What I have realized in the years since Mom died in early 2020 at 96, right before the pandemic started, is that the intense years of caregiving, as well as the preceding years of caregiving when she was more independent but still needed help, were done out of pure love for a parent who gave me life, and who lovingly nurtured me all during the years I was growing up, and who gradually became totally dependent for all her needs on me. I didn’t imagine this would happen, as no one thinks about the later consequences of what first manifests as deepening forgetfulness and mild cognitive impairment, and then slowly advances to Alzheimer’s or other forms of dementia until it becomes the focal point of both the loved one’s and the caregiver’s lives, for every waking moment.
There are many loving caregiver souls out there who had, or presently have, a more difficult job than I did because their loved one might be an adult with severe developmental disabilities, or someone born with cerebral palsy and has to be cared for 24/7 at home by a devoted parent. There are those who care round the clock for their children severely injured in accidents in the prime of their lives.
And, not everyone is fortunate enough to tap into long-term care insurance to hire home aides to help and offer some respite time for the primary caregiver, such as we had. Some of our home aides were with us six years. I never could have continued working at my job and retiring on time without them. They became like family to us, but the biggest benefit was being able to keep Mom in her own house which she dearly loved.
At one point a couple of years before she passed away, my sister and I looked into a few memory care facilities because I didn’t know if I could continue on. Thank God that stage passed and we never did that.
If you’ve ever been in a nursing home visiting someone, you see, even in good facilities, the very end stages of lives in their most visible, lingering reality. Old people who were once young and vibrant now sit in wheelchairs in common rooms, medicated and nearly unconscious. Sleep might be too charitable a word to use in these situations.
Of course residents in these homes have varying degrees of mental and physical capacity, as well as a wide range of mobility incapacity. Even if you see residents engaged in an activity, it’s still depressing. As you leave, you pass open doors and rooms with nearly bed-ridden elderly men and women, many of whom have few if any family or friends to visit them. It’s especially tragic when their own children don’t visit and have all but forgotten them.
I cannot even imagine myself in such a situation, though it could happen to any of us. That’s the reason I told a young friend of my nephew just recently when asked about my plans for the week, that I had none, and was at that stage in life when I truly was living one day at a time. This is wisdom for anyone entering old age, by it was never as true or meaningful to me as now.
I try to keep well informed about health and well-being practices and strategies, including exercise, diet, physical activity and keeping my mind active and engaged. All of these things help ensure a longer and better quality of life, but nothing is guaranteed, ever and I have many health risk factors accumulated over a lifetime.
I hope when I am older, if I make it that far, and need assistance with the routines of daily life, I will be able to stay in my apartment for as long as I can with outside help coming in for an appropriate amount of hours each week.
I never cook and depend on my microwave. I handle all the basic functions needed to live independently, but if and when I make it to 80 or beyond, all bets are off. I won’t have a single, unattached son or daughter to care for me. I have no children. I am more cut off from people than I ever have been. I maintain an interest in writing, photography and many intellectual pursuits. But I don’t know how long this will continue. You realize your oldest or closest friends, with their spouses, families and concerns of their own, will be of little help, if contact is maintained at all. This is just a fact of life and old age.
I’m trying to be optimistic about this great transition to old age, but I have so many events, situations, depression episodes, terrible and lengthy periods of unemployment, and lifelong loneliness and solitude in my past, that I could be much more pessimistic than I am. But I have a small but deeply caring family consisting of my brother and sister, their spouses, and her children. I believe we’d do anything we could for each other.
I greatly fear getting dementia or Alzheimer’s myself. I’m hyper sensitive to any clues it may be coming, or that I might be close to developing mild cognitive impairment (MCI), which often, but not always, leads to dementia. I saw close at hand what my mother experienced. This is why it is essential that I keep my mind focused on the moments and hours of each day, and each day itself, rather than injuriously ruminating or worrying about some imagined figure. This is probably the simplest and yet wisest thing anyone can learn by the time they are old.
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