Dementia journal, Aug. 14, 2014 in Daydreaming on the Porch

"Am I okay?" "Yes, Mom, you're okay," I reply somewhat wearily. "Is everything okay?" "Yes, Mom." This goes on and on. She is okay, as far as I know. I checked her vitals, gave her insulin, fixed breakfast and got her day started as I do every morning before the caregiver comes at 8:30 and I head off for work.

It's been a long, long journey, my mother's gradual descent into vascular dementia. I have been taking care of most of her needs now for about ten years, running the house, paying the bills. I moved in with her four years ago because it was obvious she could no longer live on her own. She's pretty much homebound now. It's very difficult to get her out to the doctor or dentist. It's hard for me to even recall that only five years ago I lived in my own apartment ten minutes from Mom's house. Mom could still fix her meals and get around enough to take care of her basic needs.

That's all changed now. We have four caregivers that come all during the day when I am at work and at night until 9:30 when she gets her blood sugar reading and snack before going to bed around 10:30. I don't know what I'd do without them. I'd have to quit my job. The caregivers are like family now. Thank goodness. Still, I hang in there day after day because she is my mother and I love her. I am the sibling out of three that all this responsibility has fallen on.

She enjoys life for the most part, living in the present. She loves flowers and the blue skies she sees out the big floor to ceiling den windows. She remembers nothing that has just happened or been said, although she will often say she remembers that one of her other sons or daughters has just called her. J lives in Seattle. There's not much she can do but call. N__ lives about 15 miles away at the beach and calls twice a day or so and fixes up things around the house but is rarely here. But I know I can call on him if I really need help or just someone to talk too. I don't do that too often though. Sort of awkward. I can talk in much more detail with my sister.

Mom has few friends anymore. Every once in a while the associate minister at the church will come by for a visit with an elder and bring her communion. This means so much to her. She fairly glows with happiness during the visits.

As for myself, I could retire and take care of her full time with the caregivers coming as they do, but I'm afraid to retire early, frankly, for financial and social reasons. For better or worse, work is my only real social outlet. It lets me be around people, and it gives me a sense of accomplishment apart from all I do in my role as primary caregiver.

Mom is almost 91 now. She had her initial severe diabetic attack more than 15 years ago and had to go on insulin. It's fallen to me, as I mentioned earlier, the child without a family or children of his own, to care for her. I am the eldest of the siblings. It's been such an incredibly slow decline for her, as our doctors years ago predicted. I can hardly believe that in 2006 I was traveling to Kentucky and Tennessee and she was staying home by herself. Now all her meals are prepared for her and she has to be assisted everywhere she goes in the house with her walker. Thankfully, she has that much mobility. We have a constant fear of her falling as she did two weeks ago, but she is very tough.

What being a caregiver means to me is that I no longer have any real freedom or autonomy. I am tightly bound to my role as caregiver. I still have my job. I go on drives on weekends and I get out of the house for a few hours. But I am never for a second free from the fact that I must return by a certain time. I can never leave the house when a caregiver is not there or do anything spontaneously. This often makes me depressed. I have a trapped feeling at times when I realize this is the proverbial "long haul" and there's no end in sight. And who among us can ever see what the future holds?

I don't even have an Internet life as I did years ago, and even this online journal with its minimal number of readers is a far cry from the old "Open Diary" days when I sometimes had 40 diarists to read and keep up with, not to mention emailing special online friends, instant messaging and the like. All gone now.

The one great comforting constant is my love of Nature and beauty and my desire to capture as much of it as I can in my photography: sunsets, spring blooms at the gardens, walks by the marshes or in the woods, sitting by the ocean and thinking vast, oceanic thoughts. By these I am sustained and always have been. If you count on other people to be faithful friends, online or in real life, you're going to be sadly disappointed. Only a precious few stay the course with you. That's been the case for me.

My mother is still very much with us, but this also is something that may or may not last much longer. In my opinion, she still has a fairly good quality of live. She has good doctors, takes her medicines, eats well and is not depressed. As she called for me for the umteenth time last night, and as I was helping her get ready for bed, I was grumbling and silently cursing, sick of it all and frustrated and angry with my state in life. Yet I always, deep down, realize I have to keep on keeping on no matter what. I have to stay the course, somehow.

In the middle of last night when I heard her call me on the monitor to help her use the bathroom (a portable toilet beside her bed), I looked at the clock and saw that it was 4:15 am. Next to the clock was a photo of her taken with her granddaughter when K__ was a year old. What a radiant smile Mom had. She looked so much younger than her 68 years. I remember taking that very special picture. "I hope I didn't wake you," she said when I entered the room. "Thank you for all you do. I don't want to be a burden."

Last updated August 17, 2014