Dementia journal, Nov. 19, 2014 in Daydreaming on the Porch

One of the hardest things about caring for an aging parent with dementia, day in and day out, year after year, is the constant awareness and strain of coming face to face with not only my loved one’s mortality and the fact that we could lose her at any time, but the fact of my own mortality as well. There’s a constant background apprehension of the finiteness of things, the fact of chronic illness, and of Mom’s progressively declining mental faculties. She’s more and more frail and afraid of falling, but she continues to get around the house with our help and the aid of her walker. She can never be left alone, or at most, just for a few minutes if I have to take out the garbage, for instance. Even at work, when our caregivers are with her, I am thinking of her, hoping she’s doing okay, hoping things will be alright, getting through another day that is heavy laden with the consequences of love and devotion to a parent.

My health is being affected in subtle ways, and some not so subtle. I’m sort of in denial about this. I have had tests done in the past six months that include a CT scan, and I am on a low dose of high blood pressure medication, the first time ever for this, and I am 63. The overall, underlying stress of this life never completely goes away, even when I am walking at the gardens ten miles from here or when Mom is in bed and I can start to relax at night. But who knows when she’ll call me – 2 am, 4 am, 6 am – for help using the bathroom (a portable commode next to the bed). Often, just when I have picked up a book and settled down a bit, I hear my name called on the monitor. Down the stairs I go. I never have required much sleep, so this is a blessing. But still. Yesterday at work I was very fatigued and drowsy by the end of the afternoon. But that is rare. I generally have plenty of energy. How, I don’t know.

Mom’s so afraid of falling. I would be, too. While I help her out of bed, or we’re moving from the sofa to the bathroom, she’ll say, “Please help me, God.” or “God, help me.” Sometimes she just hurts from arthritis, or she’s disoriented about where she is and fearful and anxious. She’ll start to cry briefly and then stop abruptly as if she knows that will do no good. It’s very painful to hear this and feel powerless to do anything but calmly try to reassure her and show my love.

Nights are always the worst times, especially late at night. It’s wrenching. And I sometimes get impatient and upset with her. It shows in my voice. I feel terrible about that. A couple of nights ago she said she wished she could take something to help her sleep. I said I didn’t think she needed anything quite yet that night, but she said, “No, meant to sleep forever.” This shocked me because I had never heard her say anything like that before. I didn’t know what to say.

How do I cope? I love her and will do anything I can. She constantly tells me how much she appreciates all I do. I cannot do other than what I am doing now. Often I long to be free of all the worry, the stress, and the complications of my life. But there is also the personal satisfaction of knowing that because of me she can continue to live in her home and receive the loving care she gets from me and six caregivers. Thankfully, she still knows and recognizes us, even if she gets confused about the names of the caregivers. Sometimes she confused me with my brother, or, rarely with my father who died in 1992.

I get out on the road for drives during the weekends to the gardens and nature preserves I love. I have been doing this for many years. This helps immeasurably. When I no longer have these caregiving responsibilities, I worry about myself and what kind of void will exist as I shift to living alone again, after years of being in a house with my mother and caregivers here every daylight and early evening hour. Yesterday, in a quiet moment in my room upstairs, I looked at piles of books and bookshelves crammed with books and thought, “What will it be like? How can I stave off depression? Will I be able to immerse myself in life again doing things I have only dreamed of doing for years? Will I get out and volunteer and try to be active in the community, as much as is possible for an introvert and loner such as myself.”

I’m getting older, too. We live right next to an urban college campus, and all around us are young people and college students in the prime of life. This makes me much more aware of my past at that age than I ever would be normally, even though I often think of the past and have quite unsettling recurring dreams about some of my previous jobs and job mistakes. I think back to periods of time when I was happy, busy and content and wonder if I can capture those feelings again and that enthusiasm for life. You are supposed to be much happier after you reach a certain age – the wisdom of life manifests itself – and I want that – to feel more contentment with myself and closure for all the past’s failures and mistakes.

I hold back my tears and emotions. I try to go with the flow of life, with all its complications, and find a measure of peace in simple things such as sitting on the porch in my favorite rocking chair on a warm Sunday morning, listening to the birds, relaxing and not thinking too much about myself, or much of anything actually. It’s very difficult, but I do get those mellow moments, fleeting as they are. My mother’s faith is strong. She asks for our prayers. I need to learn to effectively pray for myself and others. And I also need to reaffirm that I can only do so much by myself. I need God. I need others.

Last updated May 09, 2022