The heartache, uncertainty and acceptance of caring for a loved one with dementia in Daydreaming on the Porch

(Written on March 21)

"...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