Dementia Journal, May 29-30, 2016 in Daydreaming on the Porch

A long stretch without a caregiver took its toll on me this morning. I was tired and sluggish and in a bad mood. We’d been waiting for the tropical storm to come our way, but the winds didn’t materialize —just 18 hours of light to moderate rain, which we needed badly.

Sunday’s are usually nice and relaxing — no work to get to and I take my time eating breakfast before getting Mom up. By the time I’d had my second cup of coffee (made the old-fashioned way in a percolator), I was feeling better and more altert. My mood had definitely brightened.

I read the Sunday paper while having my cereal, and, of course, the headline in the travel section blared, “Skip the flight, board the train to Glacier National Park.” Oh, how I’d give anything to do that. What a way to get away from everything! I haven’t been on a vacation in five years.

Being a caregiver for a parent with dementia (and also a diabetic with atrial fibrillation to control) makes me dream a lot about escape. Freedom. The sweet taste of doing whatever I want, anytime I want. All that’s impossible now. After being cooped up here for 24 hours with no caregiver, one of them mercifully came for two hours this afternoon so I could take a short walk and take pictures at the state park. The sky and clouds were very interesting, and I got some good pictures while there. The air and light were pure and clear after so many hours of cleansing rainfall.

Yesterday and today haven’t been too bad compared to the other night. Mom had what I call one of her occasional (or more frequently occurring) “dementia storms.” They happen later at night, either before or just after her 11 pm bedtime. It starts with a series of questions which she has to settle in her mind. They included asking if her sisters and mother and father were still alive. What happened to them? Did they die? Where are they? Where are we now? Is this home? Is home New Orleans or Charleston? Do I have any children? Who are they? Where do they live? These questions were repeated in endless succession for over an hour. I thought I was going to go mad. It made no difference if I tried to ignore any of the questions. She just kept asking in a louder and more urgent voice. If I tried to escape to the living room, she threatened to get up by herself, and “If I fall it’ll be your fault.” If there’s any pause in my ceaseless repetition of answers to those endless questions, she’ll get angry and say something like, “Maybe I should be in a nursing home where I’ll get better care.” This always floors me as she obviously has no idea what she’s talking about. She has no thought at that time about how every ounce of my patience and endurance are tested just to keep from getting more upset, angry and frightened.

Monday, May 30, 12:45 pm

The night before last Mom was so confused and trying so hard to get things right in her mind that I had to write on a piece of paper my name and those of my brother and sister and where we lived. I also wrote down the names of her three sisters who passed away many years ago, and wrote that they are in Heaven, as she ask where they are. I placed the sheets of paper on the coffee table in front of where she sits. This morning I am home from work on Memorial Day, and the caregiver is here, the one she calls all the other caregivers. J___ has been with us almost five years and has witnessed all the slow and gradual changes brought about by the dementia.

A short while ago, Mom asked J__ if I was her son. Then she said, “I love you.” She knows who I am when she sees me, but she might forget I am in the house and asks where I am. She often asks for me when I am at work, according to the other caregivers. Her disposition remains sweet overall, and all the caregivers are very fond of her. She still can get around the house with us assisting with the aid of her walker. She often comments on the blue skies outside the floor-to-ceiling windows in the den. Our dear cat, Ginger, sits beside her on the sofa all day. Ginger is 19 now. Mom is happy with all the cut flowers I buy to keep in the den. This is a must for her and for me. Flowers bring cheer and beauty into a room, so I have them out for her to enjoy every day, without fail.

Dementia has taken a lot of Mom’s sense of time away from her. She can tell time and is cognizant of the current time, but past time is now becoming a meaningless frame of reference, especially recent past which is not remembered at all. An hour ago, 20 years ago — more land doesn’t register that much anymore, but time still matters very much to her. It’s difficult to explain. “How long have we lived here?” she will often ask. “Twenty years,” I’ll reply. The response is invariably shock and disbelief. I have to keep reminding myself that she lived in New Orleans for 44 years before we moved to South Carolina.

This morning at 6 am I heard her calling. “Mama!” “Daddy!” Then my name and my brother’s name.She needed to go to the bathroom.

So I would say she lives in a land of an eternal present. It’s always “now.” She’s still quite perceptive and aware of many things. She remembers wistfully how she loved to go walking years ago. That comes up time and again as she sits on the edge of the bed looking at her walker and portable commode. She fleetingly remembers what she formerly could do, and she still recalls her days teaching and doing volunteer work, 40, 50, 60 or more years ago.

It’s all rather complex right now, the state of her life and mine as a caregiver. Compared to those with advanced or rapidly progressing Alzheimer’s, she has a remarkable quality of life at 92. She can read out loud to me her favorite Bible verses from her lifetime indispensable source, “Thought Conditioners” by Norman Vincent Peale, although it is becoming more difficult as the words seem to get jumbled at time as she’s trying to read them. She’s read “Thought Conditioners” all her life, and today, if she doesn’t read Guideposts Magazine or the Upper Read as she once did, she will always open that little treasured booklet. We also keep many gardening books and garden magazines nearby for her to look at, especially our favorite, “Country Gardens.” She also enjoys the beautifully designed magazine, “Victoria Bliss.” She certainly appreciates the beauty in those magazines, as she enthusiastically lets us know.

A couple of mornings ago, out of the blue as she was having breakfast, she said, “I think I’m ready to go to Heaven,” followed by, “I don’t think I’m going to be here much longer.” How does one respond to this? It’s not something you can just dismiss with, “Oh Mom, you’re fine. You’re going to be here a long time,” or something equally fatuous. What I said was, “Mom, you and God will know when it’s time.” She’s much more devout than I am, but I try to believe what I say. I try to have faith, even its it’s it’s much weaker than hers. I don’t think she’s afraid of dying so much as being feeble and helpless, or a “burden,” as she puts it. “No, you’re not a burden, Mom,” I reply. “I’ll do anything I can for you.” But I say to myself at the same time, “If I can keep this up.”

It’s all taking its toll on me, more so in the past year than ever before. Seven years now I’ve been a full-time caregiver, but for years longer than that I have been in the house with her after work and until 10 at night, tending to all her needs. I used to have my own apartment until 2010. I miss it very much. I do manage to tend to my needs as well, going to the doctor, trying to eat right, taking vitamin supplements, walking when I can and getting away to the parks and gardens where I love to take pictures. All these things keep me from getting depressed, plus, working full-time keeps me engaged with others. Sure, I could retire now if I wanted to and do a lot of other things to keep me busy, but work is a defined and precise regimen, professionally and socially, that I need now, even though I’ve just turned 65. At least that is what I keep telling myself and what others will invariable tell me.

While Mom’s sense of time is diminished greatly or lost altogether, mine seems to be more in the forefront of my consciousness all the time. I look back on my youth with great longing now because then all my life was ahead of me. Whoever thinks about death and dying, illness and infirmity, dementia or Alzheimer’s when one is young, unless you have to. Mortality hardly registered in my consciousness. In my 30s and 40s — not an issue. I never went to the doctor until my 50s. My main preoccupation was getting a job and career I could stick with instead of bouncing all over the country. I finally found it in 1994 at age 43.

Now I long to be free of the demands, and the physical and psychological toll of caregiving, when I am taking her vitals and giving her insulin every day. I worry about her and whether I am taking care of her properly, and whether there are any alternative home situations that would be better for her. I can’t think of any. And, I really don’t like to even think about this. I’ve been doing this so long, a move from her for Mom would be an astronomical change. At the same time, I’m afraid of the future vacuum that would appear in my life when Mom and Ginger are gone. But I perceive my life to be on hold now, at least in terms of thinking or planning for retirement, or a future time when I am not on call 24/7. It’s hard to even imagine that now. Just fleetingly. Fantasies. Imaginings. Dreams. I often think of my favorite town in North Carolina, Brevard, where I’d like to retire. I also think of being in Seattle near my sister and her family, but it all still seems so far off. What about my thousands of books and photographs? What will I do with them? And my life here over the past 20 years — I have a very strong attachment to this one place on the map. There are many times when I can’t imagine being anywhere else even with the yearly danger of floods and hurricanes. Just thinking about that now gives me some justification for wanting to leave. Start all over in a new place. Make new friends. See the country and the world from a new home base.

Yes, it’s all tantalizing. But who can ever know the future? Life is full of constant obligations and concerns. In the future, however, I envision a time when I will be free enough and busy enough to finally put my present day worries aside and begin a newer, freer chapter in my life.

Our dear cat, Ginger