Tuesday, May 26, 2015
Last summer I went to Wisconsin to say goodbye to my mother. My sister Heidi had been told by Mother's doctor in the Alzheimer's facility where she lives that mom was having trouble swallowing her food. Normally this is a sign that the end of life is soon approaching. He advised us to come and say our farewells.
Me and my East Coast siblings made arrangements to visit with her during the summer of 2014 to say our final goodbyes. Her doctor advised us she would likely pass before the end of the year.
But the end did not come for my mom. Against all odds, and quite contrary to what her doctor told us, Mom is still with us. She sleeps between 16 and 18 hours a day. She seems content. But she was noticeably smaller than when I saw her last July.
I would not call her survival a miracle.... but I have some ideas why she has lasted longer than her doctors originally thought she might. More so than most people who end up in Alzheimer's units, Mother is still doted on. All 11 of her children went to visit her in the past 18 months, some more than once.
When we visit her, we feed her. This is a painstaking process. On each of the four days I was with my mom, I fed her at least one of her meals and some days two of them. These feedings took between 60 and 90 minutes and mom ate between 7 and 10 ounces of soft food, similar to what infants eat from a jar of Gerber's. She ate the food from a very small baby spoon and could barely open her mouth to received the nourishment. But she seemed hungry and eager to eat and sometimes she drank three or four cups of juice or water.
There were between 10 and 12 Alzheimer's patients in my mother's wing and the majority of them can still feed themselves. But three or four of them need help eating. The three nurses aides who work there spent as much time feeding these patients as they can, but their time is limited and their work schedules are demanding.
Their patience is remarkable with these feedings and they do the best they can in the little meal time they have. They feed mom as much as possible when none of us are there to take care of her. But they have so much to do and so little time, there is little doubt my mother eats better when one of her children is feeding her because she is getting individual attention and because we take an hour or longer to feed her, not just 20 or 30 minutes. I suspect we've been keeping Mom alive longer than expected because of the individual attention we give her.
When the unit's doctors gave her 12 months to live in January of 2014, they were projecting a "normal" estimate of how long most Alzheimer's patients survive once swallowing becomes difficult. They did not take into consideration she might be nourished by her children more carefully than the nursing home's aides.
My brother Paul arrived in Wisconsin several days before Mother's day. My flight from Philly landed in the early afternoon of Mother's day. I arrived in Oshkosh just in time to feed her dinner. She didn't open her eyes when I was there that evening and I don't think she remembered who I was. I had expected this. Mom seems to remember "better" my siblings Mark and Heidi who live near her and visit her several times a week.
This routine happened for several more days. She never opened her eyes but she was always eager to eat and seemed to sense when meals were being prepared and presented in front of her. She seemed to smell the food more easily than see it. On many occasions, she didn't need to be prompted to open her mouth. She seemed to sense when the spoon was ready.
On Tuesday morning, Paul and I arrived around 9:30 a.m. to help with my Mom's bi-weekly swim therapy. Mom was sleeping but was already dressed for her swim when we arrived at her room. The woman who usually gave my mother her therapy on Tuesday's was named Carla. She knew Mom, Heidi and Mark well but she was meeting me and Paul for the first time.
Carla strapped Mom into a harness that lifted her out of her padded wheelchair and lowered her carefully into the pool's warm water. Mom was awake but her eyes were still closed. Paul and I took turns moving mom around the pool, performing some exercises that Carla suggested. Paul noticed that her ankles were stiff and we gave Mom a foot rub. Her limbs were stiff, too. It was hard to get her to move her arms and legs. They were locked into the same position she maintains when she is sitting in her wheelchair. After extensive cajoling and coaxing, Carla was able to get my Mom to kick her legs and move her arms around.
About 30 minutes into her swim, Carla stood Mom straight up and was walking around the pool, holding her at arms length, trying to make my mother "walk." Mom started to respond to this. A small smile spread over her face. Carla immediately noticed and suggested that Paul and I take turns "dancing" with mother. "She might like that," Carla told us.
Paul went first and Mom's slight smile grew wider. Her eyes were still closed but she was feeling her oats. We could all see she enjoyed being squired around the pool by her son. It suddenly occurred to me that Paul (because he never married) he had never danced with Mom at his wedding. And then it occurred to me that neither had I!
I had been married twice, but I don't recall ever having danced with my mother at either one. This moment in a pool in Oshkosh was probably our one and only "wedding dance" with Mom! I didn't have music at the reception for my second wedding at my sister's house in 2003 and I don't think I remembered to ask mom to dance at my first wedding in 1980. I guess it probably pays to hire a master of ceremonies who knows how to keep a wedding party moving with two turntables and a microphone and who pays attention to all the wedding conventions!
When it was my turn to dance with mom in the pool, I suddenly remembered Dad danced to "Those Were the Days" by Mary Hopkins with my sister Trudy at her wedding in 1978. I took Mom in my arms and I asked her if she remembered that moment. And I started to sing the song to her and I held her close in my arms, twirling her around in the pool. Paul and Carla were laughing at me but Mom's eyes suddenly opened up for the first time all week. Now the smile on her face was huge. She couldn't actually TELL me she remembered Trudy dancing to "Those Were the Days" but there was no doubt I had triggered a memory with the song I was singing.
It was quite a scene, singing to my Mom and dancing around the pool with her, her eyes opened wide and a smile as wide as a river. I danced in the pool for about three or four minutes, Paul and Carla laughing at us the entire time.
It felt sad to me it had taken this long for me to dance my "wedding dance" with her. But, well, at least I can say I managed to squeeze it in. I know there must have been other times I danced with my mother, at family occasions and weddings. But not many over the course of our life times. And none more memorable than this one.
Mom was tuckered out by all the fun. Carla lifted her out of the pool and toweled her off. By the time Paul had wheeled her back to her room she was sound asleep.
My Dad must have been smiling up in heaven at our swim therapy antics. He had better start practicing his steps because Mom still has some pretty smooth dance moves and she's been practicing!!! Sooner or later, she'll be looking for a heavenly partner.
I'm pretty sure I know which song she'll request.