Thursday, August 30, 2018


Abby's maternal grandfather died this summer from complications due to dementia.

Abby was one of Grandpa's biggest fans. She had a special place in Grandpa's heart and he showed great concern for her well being. He was a devoted supporter of Team Abby and was always hopeful for better days ahead for her. I remember once he said, "I hope Abby will be able to talk during my lifetime."

Grandpa's favourite photo of the two of them
As his dementia progressed, Abby and Grandpa began to have more in common. They each had a different neurological condition and they both required 24/7 care. For a long while, I was able to take the two of them out together for walks, Grandpa helping by pushing Abby's wheelchair and Abby helping by providing her chair as a steady mobility device to support him. More than anything else, he wanted to be helpful and to take care of his family. They were two peas in a pod. They absolutely loved spending time together!

Grandpa insisted I take a photo of the two of them by the flowers.

Grandpa's concern for Abby would sometimes cause him distress. He wanted to make sure she was okay and he was always happier when he could see that she was. Even when he eventually forgot her name, he picked up on the cues that she was dependent and needed extra care. Until one day during the last month of his life, that is.

Grandpa would often come over to our house for some therapeutic time with our cat and dog. He would sit and pat the cat and talk to it. Every few minutes, he'd ask one of us, "Where's Audrey?" (his wife) or expressed related concerns. On this day, about a month before he died, Abby was sitting across the room from him and I had stepped out. I heard him asking her the questions and talking to her directly as if he'd forgotten that she couldn't speak. He was seeking reassurance from her, saying, "I'm worried. I don't know what's wrong." She had her Tobii (AAC/ speech-generating device) in front of her and she was responding in her developing way of putting core words together: "want. it. good. have." To most people, it's hard to decipher, but she was trying to reassure him.

So, later that day, I added a phrase button that said, "It's okay, Grandpa" and modelled for her to show her where it was and gave her some time to practise for next time he visited. This is what she came up with the first try, completely independently:

It's okay, Grandpa.
I know it.
(Then she turned the volume up.)
I love you.

She'd been wanting to take care of Grandpa for years and she finally found her voice and her chance to be his caregiver.

She used that phrase quite a bit during the following days, when he came over, when she wanted to go visit him in the hospital, when she wanted to ask how he was doing, when she visited him during his last days, when she wanted to say how much she misses him.

We all miss him and we were so very thankful for the memorial donations made to the Ontario Rett Syndrome Association in his memory. He would be so pleased. And his wish did come true.  She was able to talk during his lifetime. When he really needed her.

Grandpa, Abby, Mom at Run4Rett 2008ish

For those who are interested:
Join us for the Run4Rett on Sept. 16th.
Sponsor Team Abby.

1 comment:

Betty Clarke said...

So beautiful! They loved each other! Thanks for sharing, Karen!