A year a half ago, I posted an article entitled “Where are you?” — and I’m still feeling the same guilt — only magnified. At least the last time I went through this stage and wrote about it (it is a recurring issue) my Dad was there with my Mom. Now I know my Mom is by herself. I also know based on my visits and from the staff reports that she is not doing very well in the community.
I get a call two hours after I visited asking me where I am and when I will be arriving and there is something frenetic in her tone.
She will go through these cycles. I imagine her decline is much like a child’s development, but in reverse. When my son was 4, someone shared that kids develop in an upward spiral — two steps forward, one step back. In my Mom’s case, she goes two steps backward, and one step forward.
When she asks me when I’m coming out — I ask her if there is something she needs instead of telling her I was just there and we went to the grocery store. She asks if I can hold on, and I wait as she roots through the kitchen and comes back. By the time she returns she picks up the phone and out comes gibberish. I ask her if she has Coke.”Wait,” she asks. She returns and this time tells me she has Coke. I transition the conversation to tell her I’m on my way to pick up my daughter and what we will be doing this afternoon.
I fight my logical mind and remind myself of the a poem someone shared with me a few months ago that I renamed the Dementia Request. Each time I gain a little more understanding. Absorbed.
Dementia Request
Do not ask me to remember, don’t try to make me understand. Let me rest and know you’re with me, kiss my cheek and hold my hand.
I’m confused beyond your concept, I’m sad and sick and lost. All I know is that I need you, to be with me at all cost.
Do not lose your patience with me, do not scold or curse or cry, I can’t help the way I’m acting, I can’t be different through I try.
Just remember that I need you, that the best of me is gone. Please don’t fail to stand beside me, love me ’til my life is gone.
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In a TedTalk, Joshua Foer shares a talk on “Feats of Memory Anyone Can Do”. It’s an interesting talk on the evolution of memorization, and points out to us how the state of our memory has declined, because we have outsourced so much of it to books, notes, our phone … the everyday tools we use.
One of the best gifts my mother gave to us was the summary of her funeral wishes that she wrote up more than 30 years ago, and had revised in early 2002 when they updated their estate plan to include a trust. In her guidance, she mentioned the dress she wanted to be buried in. Had she not done that, I just realized she might have been buried unclothed–or it least not in something she loved.
