Wednesday, March 27
I decided to visit Mom this evening, even though I expected to sit silently at her bedside. As of yesterday, she's receiving Hospice care. She's in the same nursing home but a new team of nurses, a bath aide, social worker, chaplain and volunteers are now at our beck and call. This individualized care is a relief, knowing their goal is for her to be comfortable. But it's also the death knell we've dreaded. She's lost a lot of weight, hasn't been eating, and won't always swallow her medication.
In the last 48 hours, the phrases "end of life" care, pain management, and POLST (physician orders for life sustaining treatment) have entered my vocabulary. A Hospice nurse met Mom yesterday and we (my sister, Dad and I) asked her as many questions as we could think of. I saw Mom briefly in her room, but she was unresponsive. I was glad to see she was peaceful lying in bed, but couldn't ignore the change in her appearance, even in the month since I last visited.
So I was prepared for the worst when I went back to the nursing home today.
I brought flowers. The special care unit could use a touch of color and it seemed appropriate to bring a bit of spring indoors. Knowing Mom may not notice them, I addressed the little florists' card to her nurses, as a thank you.
When I got to her room, I was surprised to see that her bed was empty. Another patient had wheeled herself into Mom's room by taking tiny sock-footed steps while seated in a wheelchair. She was vocalizing something loud and startling. A nurse followed the stray wheelchair-walker into Mom's otherwise empty room and redirected her to the hall. When I explained I was looking for Vicki, the nurse pointed me to the dining room. There was Mom in her own wheelchair, waiting for dinner with 12 or 14 other residents.
I was shocked. I kneeled next to her, looked up into her face and said, "Hi Mom." She smiled. So many unspoken words yet understood messages transpired between our smiles. I hugged and kissed her and pulled up a chair next to her. I held her hand (so small and soft, but familiar).
The King and I was playing on the large TV on the wall. Nothing like a little Rogers and Hammerstein to soothe the soul. I had arrived just in time to watch the scene where the royal family performs a ballet of Uncle Tom's Cabin. The complexity of an opera set in Bangkok in 1862, depicting Harriet Beecher Stowe's storyline from a Siamese perspective was a perfect juxtaposition. [Watch that scene if you have the chance. I bet that's what it feels like to have dementia: familiar elements in an incomprehensible context.] My fellow movie-viewers stared blankly at one another.
One woman pounded the table and shouted "We want dinner!" Another woman shuffled across the room to ask a bewildered fellow-resident (seated furthest from the exit) if he would "please close the door, these old ladies over here are cold!" He couldn't make heads or tails of her request even though she repeated it several times ("the widows, they are cold!"). She eventually gave up. As she wandered back to her seat, his wide eyes scanned the room for any other evidence he had caused some catastrophe. Mom chuckled. I don't know if she was following what was happening among her peers or she liked the close-up of Yul Brynner on the screen, but she found humor somewhere and laughed to herself.
Dinner was served and I helped Mom with her bean salad ("You have to eat all your vegetables before you have dessert! You taught me that"). The grilled cheese was hard for her to bite, but she polished off the tomato soup, milk, smoothie, and chocolate ice cream. This felt like a gold medal in the Olympics of life. I cheered her on with every slurp and swallow. She burped, looked me right in the eye, and said, "Sorry." I laughed and reassured her, "We're not worried about table manners here."
I'm so glad our family conversation about feeding tubes was irrelevant today.
Tonight I am indescribably happy to have shared an hour and a half with my mom. My heart is bursting with gratitude. The final goodbye is coming, but I got to see her smile and kiss her forehead today.