Dementia Journal - July 8, 2016 in Daydreaming on the Porch

You know it’s going to be a rough night when the caregiver for your parent who is leaving after a six hour shift, says to you, “Good luck!”

And so another in a years-long series of nights taking care of my mother began. The difference tonight was that for the first time since I have been doing this full time (January 2010), I was fearful and afraid during my brief visit to Waterfront Park after work and before the caregiver was scheduled to leave at 8 pm. In the past month, I have noticed a marked change in Mom’s personality and mood shifts. Mostly the sweetest person you’d ever know, she has on several occasions in the past week turned into a bit of a beast — angry, belligerent, lashing out, frustrated to the extreme and trying desperately to make sense of her diminishing world where she can’t remember anything that happened a minute before.

The night before last, it started with not remembering if she had been given supper and criticizing the caregivers for coming and then leaving, when I wasn’t there. Totally irrational. Of course that never happened. How could any son of hers hire such people, she said of the two caregivers who have been with us for years and patiently and lovingly attend to her needs. “They are idiots,” she said, to my growing disbelief. “Are you my son?” she then said to me. “Im getting terrible care.”

After that outburst, and for another hour and a half the questions began and continued until I wanted to pull my hair out. There was no way to avoid answering. If I did, all kinds of rather mean accusations would follow. “Who are my children?” “Where do they live?” “What happened to my sisters?” “Where are they now?” (As you may recall from a previous entry, I had to write down all the names of her children and siblings on two sheets of paper and also include where they were).

“Am I in Charleston?” “Why did we sell the house in New Orleans?” “Am I well off financially?” “Do my other children care about me?” “You’re the only one who does anything for me?” “Are you my son?” “Is B gone? R? F___? (Her sisters, the last having passed away in 2003). She has no idea whether they are still alive or whether she has seen them yesterday. The questions continued for an hour and a half more until it all stopped and she was quiet and asleep finally by 1 am. A half a milligram of a sedative was imperative, as much as I hate for her to take them. She will generally sleep much of the next day.

The frightening thing is that whereas these kinds of manic, desperate, question-filled nights might happen once a month in the past, they now occur several times a week. And, the worst of it is late at night generally, but also just after sundown. I’m convinced something unconscious about the night closing in makes her fearful and insecure. I don’t hear reports of this kind of behavior from the caregivers when I am at work. It seems to fall on me to bear the brunt of these “sundowner” manic episodes of dementia. The other night I was almost in tears. I was beside myself. Nothing seemed to settle her mind. Finally, I called my sister in Seattle at 1 am and she helped her calm down just enough for me to continue to cope with the situation until she finally went to sleep.

People might say, “Why don’t you hire someone at night?” We can’t afford it. We’d totally go broke. The insurance covers most of the day, early evening and weekend caregivers, but no more. A set amount per day which has been a lifesaver and has enabled me to hire good people and continue working.

Consider at last putting her in memory care, others might suggest. I can’t bear the thought, but for the first time I am really considering the “what ifs” . Could I find a decent and compassionate place? Could I NOT be taking care of her? Would my nights be filled with worry about whether she was being neglected or abused? All kinds of unbearable thoughts ensue.

Tonight when I got her in bed and the ranting and questions continued, and it looked like I was in for another intolerable night, I tred very deliberately to not raise my voice, to stay patent and calm, and to show as much love as I could. And it appeared to work. Either that or she was too exhausted to keep pressing me with questions. “I’m trying to get things straight in my mind. I need to ask you one more question,” she might say. The only problem is she didn’t remember the answer I just gave her, and so, Questions. Answers. Repeat again.

The morning after the recent terrible night, she was her “usual” self. Sweet. Quiet. A beautiful smile. Asking if it was going to be a pretty day. What was for breakfast? “Guess who’s coming this morning?” I asked. “J, “ she said. Yes! “I’m so glad.” I was, too. The door opened and my relief was there. How very glad I was to see her. I proceeded to take mom’s blood sugar, give her insulin, take vitals and fix breakfast after J got her up and ready for her day.

Mom didn’t remember a thing from the night before. But I sure did.

“Are you my son?”

“Yes, Mom,” I replied wearily and with sadness. The person Mom used to be is no longer. I knew that before, but it’s just been this week when this reality truly hit home with a finality that seemed to close a lot of doors on the past and make me very anxious about what lay ahead. But before I could dwell on any of that, I had to be out the door and on my way to work. What a relief.! But oh so fleeting and temporary. My work days fly by very quickly now.

Last updated July 10, 2016