Dementia Journal -- March, 2015 in Daydreaming on the Porch

March 4, 2015

I keep telling myself I need to write in this journal more often, but the subject is painful to explore and hard to recall, ironically enough, because there’s a steady drumbeat of incidents, things my mother says that I want to remember, and mood and thought changes this caregiving journey brings. I am reminded time and agin, any time of the day or night, what it’s like too be very old, suffering from dementia, but also struggling and fighting against it with a spirit and determination that amazes me.

For instance, in the middle of the night when Mom wakes up to go to the bathroom (portable toilet by the bed), she’s mostly alert and knows where she is. I hear her on the monitor calling, and I am usually awake late at night, reading on the iPad. I’m a total night owl and always have been. Sometimes I am asleep and still hear her calling clearly. Those calls to come and assist her in the middle of the night or early morning hours are routine now, and that’s a bit scary. The fact that this almost seems normal scares me. At times, I curse in frustration when I realize I have to go downstairs again, but when I see her, as always, my heart melts with tenderness and compassion. My momentary anger and frustration fade.

“Thank you for all you do,” Mom says. “I hope I didn’t wake you.” When I let my anger and frustration show, and my patience fades, she picks up on it immediately.”Do you think I should be in a nursing home?” she will ask. “No, Mom,” I say. “Of course not.”

This morning about 7 am, an hour after I had gone down to help her and get her some water, I heard her calling, “Mama! Mama?” Sometimes she will say this, and then, as if waking from a dream, she will call my name. I begin to think she is dwelling more and more in her far past in those dreams. When I got in the room and started helping her out of bed, she said, “I think I’m dying.” This is always a brief shock, but, again, it’s something I am used to hearing. There’s nothing wrong with her, as far as I know, and her vitals are fine when I check them, but obviously she is thinking about her own death more often, and I would be too if I was 91. Even with advancing dementia she’s preparing herself for the end, and her conscious awareness of this fact of her old age, and many other related things she talks about, continue to surprise me when they shouldn’t. Sometimes they are unintentional or humorous.

March 8, 2015

Dementia is a very scary disease. It robs a person of memory. Over the years my mother has just about lost her short term memory entirely. Hence, some question or concern will arise in her mind and she will need reassurance and an immediate answer or response to her question. Last night she was in an endless, repetitive loop of asking me whether, 20 years ago (but to her it was like yesterday, literally) she had made the right decision to build the house we currently live in. I assure her that it was. Seconds or moments later, asks the same question again. I answer in the affirmative. Then she wants to know if everything is in order about who owns the house now and in the future, and who will be living in it when she’s gone. This goes on and on for a couple of hours. I get exhausted and extremely frustrated, annoyed and angry. Time for the “Why me?” pity.

Often, first thing in the morning, Mom wants to know where we are. She lived 44 years in New Orleans and sometimes (more often lately) she thinks she’s still there. She can’t believe she has been in Charleston for more than 20 years. Neither can I, as a matter of fact.

“Did I make the right decision?” “How long have we lived here?” It’s about 8 in the morning. It takes her a while to get oriented in time, and she sleeps for much of the morning. After lunch, she is awake and the questions and constant repeating herself start up again.

She brings up again the fact that her three sisters are gone but she can’t remember when they passed away, even though that is a longer-term memory. Or should be. Maybe a lot of that is gone, too, or else it takes specific prompts to help her retrieve those memories. Much, or most, of her recollections from childhood, or decades ago, seem to be intact.

Mom fights this dementia, even if not consciously. I will hear her say, “I don’t feel right,” or she will ask me if her mind is okay. Or, she will say, “Am I losing my mind?” She still knows and senses a lot. The still intact sharpness of her mind is there, in other words. I see it often. When all she has to go through dawns on her for brief flickers of time, she says, “I think I’m going to cry.” But she doesn’t. She takes an anti-depressant, but she is not depressed most of the time. But again, she is aware of much more than I realize and she takes in more of what we are saying about her when I may think she’s not listening. I have to really be careful about this, but I’m not. I have the excuse that she will immediately forget everything I’ve said. That’s no excuse, and I know it. Again, a refrain, “I hate to be a burden. Do you think I should go into a nursing home?” “No, Mom.” “Okay.”

I feel closer and closer to her as the dementia gets worse. Physically, she’s holding her own. The diabetes and atrial fibrillation. Under control. It’s just one relentless march of time, aging and increasing fragility. It’s difficult to maintain balance when she gets up to do anything. We have to hold on to her as she weaves and bobs a bit on unsure footing, trying above all else to prevent her from falling. Then there’s the increasing incontinence which is one of the most stressful things of all to go through. Clear evidence of loss of independence and dignity. She feels terrible. I feel terrible for her. The other morning it took me 45 minutes to clean up her and everything else. It was 4 in the morning.

I’ve been around this for so many years now that it’s my life. It’s all I know. She and our 17-year-old cat, Ginger, are my family. When they’re gone – well, I don’t even want to think about it, but from time to time I do, and I feel a sudden and profound sense of dread. Am I going to be a lonely old man, struggling with depression amid piles of books and magazines in my second floor living area? All my life I’ve had only a handful of close friends. It’s vital that I try to keep up with them. Will I? I like to think I’ll still be working a few more years and that doing so will stave off the loneliness I experience now, and would feel later when I retire. Work. It’s the great distraction. The only social life I have. My away from home family. My co-workers are close having worked so many years together, yet distant, too. Life will be so different before long (or maybe not) I really can hardly even contemplate it.

March 9, 2015

It’s sunny and mild today. Spring is here. This really lifts my mood. I look forward to seeing the azaleas in bloom and visiting the gardens. What a glorious spectacle is ahead! My camera is ready. Escape.

Mom had an amazing night. Hardly any spitting up and phlegm, no incessant worries and questions. She slept straight through until 6 am. What a blessed relief for her and me. One day at a time.

Last updated May 09, 2022