|From the Alzheimer Society of Canada|
This graphic popped up in my Twitter feed the other day, part of the Alzheimer Society's national campaign encouraging us to remember that people living with dementia are STILL HERE.
Right now, it seems as if the automatic reaction to someone with dementia is to believe they don't understand anything. But that's OUR fears and OUR despair talking -- perhaps a lack of empathy, too. If we change our default setting to assume a person with dementia is still here, understanding on some deep level, whether they respond in obvious ways or not, we will transform the care we provide.
As Alzheimer Awareness Month in Canada comes to an end, I'd like to share my most memorable witness of this truth, one I wish I'd known from the outset of our journey together with this disease: My father was still there, had been the whole time, and he was there until he died (another beautiful gift).
... Dwayne and I flew to Ontario for a week to visit my father on his birthday. It had been a year since I’d moved away and I wanted to be the one who fed him his birthday carrot cake.
The first few minutes of being with my father always were the hardest. First, there was the "I love you so much and I wish you were fine it's so hard seeing you like this Daddy" moment then I took a deep breath and said "Hi, Dad," and he smiled back and we were fine.
Dad looked happily surprised to see me; when I re-introduced Dwayne, he looked very interested. When I said, "Remember him? This is the guy who took me off your hands," Dad laughed. And laughed. And laughed some more.
After feeding Dad his supper, I told him we were going home for our meal and he puckered his lips for a kiss then Dwayne stuck out his hand, saying, "Shake my hand, Reg?" and Dad held out his hand to grip Dwayne's. He started to laugh and he had this great big happy grin on his face. Almost giddy. I couldn’t tell if he was laughing or crying.
On Dad’s 66th birthday, his third birthday since moving into the nursing home, I walked into his room and said, as usual, “Hi, Dad, it’s Sara.”
A few minutes later, Dwayne entered with a handful of bobbing balloons and my father smiled.
Seeing his smile, I pulled out my camera to take some pictures of us together. “Make sure you get the Happy Birthday balloon in the picture,” I instructed my husband.
“Here,” Dwayne said, handing me the digital camera, “make sure that’s what you want.” In the photo, my father was not smiling. He looked pale and miserable, fading away like a photograph that has hung on a wall for decades. Perhaps he thought he was responding when we said, “Smile, Dad,” but more likely he was thinking, “Please don’t remember me like this.”
I pulled a chair right in front of his wheelchair so that I was in his limited line of vision.
“I love you,” I said and touched his arm. “I love you, Dad.”
His face swung to mine. He was searching for my eyes. When we made contact, I said again, “I love you.” There was a flicker of response in his expression. His mouth shifted, he inhaled then the thought was gone. Dad couldn’t put it all together but he kept looking at me.
“I love you,” I said with a smile. “Do you love me too?”
His response was immediate and unmistakable, his use of actual words so rare as to be a miracle.
Because of an incoming snowstorm, we extended our visit by a day and the delay gave us the most beautiful gift. I continued to play music while Dwayne and I were there at suppertime and that evening, when "King of the Road" came on, I turned it up and sang along. Dwayne joined in.
My father tried to sing with us. When he tapped his hand against his leg, a couple of taps, in time to the music, my hands flew up to cover my mouth. It was like I was witnessing – Not a miracle but certainly something extraordinary.
In his book, Musicophilia, neurologist Oliver Sacks wrote about witnessing deeply demented people respond to music: “Once one has seen such responses, one knows there is still a sense of self to be called upon, even if music, and only music, can do the calling.”
When I was home the previous October , Dad had seemed to perk up for my first few days but then the effort to be "normal" had become too much for him to sustain. I thought that would happen this time but his perkiness carried on. Dad had laughed so much this visit, visibly enjoyed the company of his son-in-law; perhaps the voice of a man, the handshakes made him feel like himself again. Not betrayed by his own brain, not forgotten by his friends.
I didn’t tell Dad we wouldn’t be in to see him tomorrow. I just kissed him on the cheek and said good night but emotion overwhelmed me and I hurried out of the room, leaving Dwayne alone to shake hands with Dad one last time. He came out of the room with tears in his eyes.
“Your father wouldn’t let go of my hand,” Dwayne said.