Something I find a lot of people either don’t think about or don’t acknowledge a lot, is that grief doesn’t just come from someone dying, but can come from someone alive who is no longer there. Those of us who have loved ones with dementia or Alzheimer’s know this well.
A common reaction I have found is when you’re grieving your relative. Everyone assumes that they are no longer here and when you correct them and say that yes they are, they are confused as to why you’re grieving – if they’re alive, you should be grateful some people have loved ones who are actually no longer here.
But, you are allowed to grieve if your loved one doesn’t know who you are anymore or if they forget who you are, because even though it’s not their fault it hurts nonetheless. You are allowed to grieve someone who is alive.
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In my case, my grandmother (my mother’s mother) is the loved one in this story. My family suspected she would get Alzheimer’s since her late sister also had it, and I could see it in her years ago as well. I could see it when we were on the phone and she told me a story twice, and then three times. I could see it when she would pause and look embarrassed because she couldn’t remember my name. I could see it when I had to watch her take her medications because she no longer trusted herself.
For most of my life, I was close with my grandmother – she used to say, I was her favourite granddaughter and I’d laugh and reply, “I’m your only granddaughter.” I usually saw her twice a year when she came with us to a medical conference my mother went to every year in May, until I was eight and then it was once a year usually, when she’d come down to my hometown for Christmas or New Years.
When I was younger, I’d call her on the phone and I’d choose three or four books to read to her. We’d also exchange emails for a bit, until using the computer became too difficult for her. But something special that me and my grandmother shared was that we both were writers – now her books were more auto-biographical than mine but she always was up to reading anything I wrote. And occasionally I would draw little characters for her short stories and poems that she would photocopy into the book she would make.
Alzheimer’s is a terrible disease for those who have it, but it’s also hard for those who have to witness their loved ones going through it.
During the pandemic, I would call my grandmother more often – I told her I was going to Carleton and she was excited – she said, Ottawa was beautiful. She would tell me stories about what she did around her house and sometimes stories about her and my grandfather from the past or my mother when she was younger.
But, then our phone calls slowly became me talking more and carrying the conversation or her repeating stories. I will admit after the fourth or fifth time I’d start to say, “Nana, you’ve already told me this.” What I’d give now to hear her say those stories again.
At one point, she decided she would move into an assisted living facility – which surprised me since for years she had been vehemently against moving from her home. I was happy for her though since I thought it would be the best for her, but I was worried about how I’d contact her.
After her move, my Uncle gave me the number and I called her. The first time I called she was excited to talk to me and said the place was nice, as were the staff, as were the other people.
The second time I called, she was getting a little paranoid about people taking things from her as I tried to calm her down over the phone.
Then one time I called and I could tell she didn’t know who I was, she tried to hide it by asking generic questions and I provided I was her granddaughter, but when I hung up the phone instead of her usual end of the call when I would say, “I love you.” And she would say, “And I love you too. God Bless.” She just said, “God Bless.”
The last time I talked to her on the phone it was a rare lucid moment and she said, “I ran from down the hall when I heard the phone, because I knew it was you.” We had a short conversation since she was worried about missing dinner but she said, “I wish you’d call more.” She ended the conversation how she always had, “I love you. God Bless.”
Since then, she doesn’t answer my calls anymore. The last time I tried to call she picked up the phone but then gasped and hung up the second I spoke. After that, I stopped calling.
I grieve my grandmother who is still alive, because she no longer knows who I am. And that grief is valid.
And if you’re in the same situation so is yours and don’t let anyone tell you differently.