Lewy Body Dementia is known for being a roller coaster - insofar as there are no definitive stages/phases through which the patient passes. While one week the family may begin grieving, they may find that the patient is back to her old self again. So, that being said, it’s difficult to convey what’s going on with Mom.
Mom at Christmas 1994
This week, Mom has been rather unwilling to get out of bed, and her eating habits have also been rather lethargic; however, until yesterday, she was eating something of each meal. Yesterday, Saturday, she ate 40% of her lunch and 10% of her dinner - nothing else. She has been refusing assistance in the evenings, and many times during the day. She is weaker than last week, and her voice today was fragile (compared to last week). Difficulties with walking and holding on to utensils, glasses, and other items have also arisen this week - much as it has in the past.
She doesn’t seem to be in any pain but seems rather comfortable. Her cough has vanished, as well. Yet, the edema in her legs seems to have returned, so the staff is elevating her legs when possible.
On Thursday, Jean came for her visit and her account reads as follows:
Hi, Tony,
This time, I took pen and paper and vowed to take notes...and I did just that.
I was alone this time, so had to talk to myself on my travels to and from St. A's.
Signed in at 11:25 then found Norma seated in her chair at the head of the long row of tables. Head down, she was nodding, and there was a good looking breakfast in front of her.
I woke her, then started to offer spoonfuls of a tasty-looking yogurt--something with berries in it. Gradually she ate all that, then I heated up her breakfast, told her it looked good and started to give bites. Because I can't remember, I tallied up the bites she took of banana--5, egg--2, and French toast--4. She was content to let me feed her, and it was slow going. I had offered to heat the coffee but did not push that, as it was more important to get some nutrition into her. There was a glass of red juice, too--that was taken readily.
A few partial bites landed on Norma's maroon shirt (with gray pants), so we both worked on getting rid of those. The napkin on her bosom seemed to slip down each time it was put there. Lianna told Norma she would help her put on a clean shirt later.
I'd brought nail polish, hoping she would be agreeable to having that. Gave her a choice of light pink or clear, showed her the two on my nails. No decision; is that something more difficult lately?
She was fine with resting her hand on the table, then on my hand, as I painted on the pink polish. That took a few minutes to dry, then I did the other hand. It was easy, no comments from Norma, who was
nodding off as I did this. I admired my work; no comment from Herself.
The Oregonian was there, and Norma glanced at it but did not read it--I think, maybe because I was talking with her. We looked at ads, pretty people in colorful clothes. I asked her if she needed an electric mixer (an ad we saw)and she said, "No, but my mother might."
When I was wiping off her messy shirt, she said, "You could go a little bit quicker." Indeed, I could.
"Thank you," she said when that task was done, and a clean napkin set on her bosom.
"Is it cold today?" she asked. "About 45." "That's not too bad."
All, this time, five other ladies were there, hardly speaking but seeming content.
All too soon after breakfast came LUNCH! It did look good. There was soup with little bits of veggies, chicken with dumplings, string beans.
Again, I counted bites, most of them courtesy of my help. Chicken--11 bites, soup--5 spoonfuls, string beans--5 bites plus 4 "solo" bites. Dumpling--one bite, as I wanted to concentrate on the other solids.
There was pie for lunch, probably a sweet potato or yam pie, which brought "Oh, my goodness!" and "How nice!" when I pointed to the two little dabs of whipped cream next to the pie. But she ate only half of it. I, on the other hand, ate all of mine, which appeared silently from smiling Iofina (that's "Yofina"). No coffee offered, nor did Noma ask. Elsa brought her a pill, and told me to "Keep talking," obviously to distract her resident. Later there was a tiny cup of a fluid.
Elsa told me you had brought pies for the caregivers, and she had a piece of a berry pie that was so good. We agreed it was a nice thing for you to do.
Twice during my two-hour visit Norma coughed 4-5 times in succession, productive coughs, I think. I asked her where it hurt, and she pointed to her throat. Got cough drops for her, but no interest there.
I don't remember what inspired, "Now that is a nice thought." See, even with notes, I don't catch it all.
I took two pictures with my little phone to send you, but the memory was full; should not have been, as
I'd erased a few pictures. She was willing to pose with almost a smile, and I said: "There's your face" as I snapped the picture. "Such as it is," she answered smartly.
I asked if she usually has a nap after lunch, with "Sometimes" the answer. Left her at the table, seeming content, and said a quick goodbye with a hug.
I definitely do not want to be a reporter when I grow up.
As you can tell, her appetite is not what it once was. Perhaps it’s the medication, or it may be the progression of the syndrome of LBD. Whatever it may be, she is growing weaker and less interested in much of anything.
Today, she was still in bed when I arrived. She asked what I had done so far and I told her - cleaning, dogs, and park, shopping, coming to see her. I also mentioned I was going to her great-grandson’s birthday later and she asked if Dad was going. I told her I wasn’t quite sure, but I knew he’d be there one way or the other. She smiled and nodded back to sleep.
Mom hiking Sol Duc and luxuriating in the beauty and warmth (ca 2000)
I tried to give her some juice, but she demanded to hold the glass herself and then, after drinking a bit, her hand began trembling and she dropped the cup so juice went all over her blouse and sheets. I was cleaning it up when Rosa and another aide came in to roust her from bed.
They pulled out her portable recliner (to help elevate her feet) and began making her fashion choices for the day. They are so good natured!
I kissed Mom goodbye, but as I left I began wondering if there was going to be another incline, or if this was the beginning of the final portion of the ride; best to treat it as the latter while hoping for the former, I suppose.
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