Alzheimer's Blog: Slipping towards the light

Former television news anchor Diane Ako blogs about her life as a mother, wife and caregiver to her mother, who is in the final stages of Alzheimer’s.

My mother is nearly catatonic, four years after being diagnosed with Alzheimer’s. She sits wherever placed and rests with eyes half shut. She doesn’t speak. She needs to be fed and wheeled around now. This is the last stage of Alzheimer’s.

She mumble-whispers and it’s mostly unintelligible. She has a couple things she tries to say: Thank you, I love you. The very act of summoning the strength to form words is exhausting for her. It’s so touching that the words she chooses to expend her energy on are beautiful ones.

I sit next to her and hold her hand, update her on our lives, and look out the window for peaceful meditation after I’ve run out of words. In the course of every visit, I will weep.

She is so small, and becoming smaller at every visit. She is so far away, and I miss her. She is shrinking before my eyes. She is drifting away and I can’t stop it.

Then I will sit there and try to be as present with her as possible, imagining my love has a form, and sending that form into her consciousness so she knows she is loved. I don’t know what to do when words fail. Words are my life, and I don’t know how to communicate all the things I want to say when the receiver can’t receive it.

A friend who volunteers with hospice care told me Alzheimer’s patients spend more and more time in the spirit world as their disease progresses, so I have on occasion asked her if she sees her dead relatives.

She has always said no. Until today.

As I list them, she nods yes to almost every one except a calabash cousin. They’re all there, she communicates to me, and they tell her to join them. She says it feels nice to see them and she wants to be with them.

I suspect she is afraid to leave my father alone. This year they marked their 49th anniversary. She is his life.

I am right. I tell her it’s OK to go because I want her to be happy, and that she has my permission to join her relatives. I reassure her I will look after him as best as I can.

This conversation shocks me. Logic would dictate it’s not shocking because she’s obviously very sick, but logic and love are mutually exclusive.

I want her to be at peace, but I also don’t want my love to be taken away. My love for her, her love for me – it exists here in this time and place on earth. I don’t want that to change. I am scared.

And then I have to remind myself that love doesn’t go away. One day when I can’t look at her with my eyes, I will have to see her with my heart and trust that on the other side of this veil, she’s there, and it’s there, and it’s still alive and abundant.

So for today, I’m glad to be here - to sit with her, and to hear her whisper she loves me and thanks me for coming.

To read more of Diane's Alzheimer's articles go to her "Peace of Mind" blog at Hawaii: In Real Life or at her new website https://www.dianeako.com/blog/