All That Matters Is Love

So much gratitude for the "love fest" that has been shared countless times with my mom and other sweet, beautiful residents at her assisted living.

These are images of my 93 year old mother from over the past 3-4 weeks. Her days have fluctuated a great deal as the late stage Alzheimer's has progressed. It is such a difficult, painful, blessed, and incredibly loving experience to stay open and be with my mom as she has continued to be in her process of leaving.

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For a while, my mother has most often been in an upturn, a kind of rebound — being more awake, more able to eat (and especially since switching to a pureed diet), more able to in some way respond to me and those around her. While her words have been fewer and fewer, my mom would sometimes raise her hand and move her fingers slightly in greeting or to say goodbye to others who were arriving or leaving our table or the dining room.

These moments were also interspersed with those times where my mother's eyes would only be slightly opened and glazed over. The stimulation of others talking at our dining table during the lunch or dinner hour would sometimes help. But then when they would leave our table, Mom would also sometimes leave and go to that other place that is not here. Her eyes would close, she would stop eating, and be unresponsive to me when I spoke softly into her ears, kissed her check, massaged her arm and neck, and offered her another small spoonful of food.

So I would know then that my mom had eaten all that she was going to eat, and I would wheel her back to her apartment. And I'd sit beside her holding her hand while my mom sat in her wheel chair, eyes closed, as we awaited her caregivers. Then, suddenly, Mom's eyes would open, a smile would sweep across her face, and she'd look into my eyes. "My sweet darling." And she was back, for a few moments in the here and now, with the strong current of love flowing between us.

It is like a light-switch that gets turned on and off and then on again  sometimes all during the same visit. I have not known from one day to the next, or one moment to the next, whether that switch would be on or off. And I'm mindful of just staying completely open and surrendered into whatever is from this moment, this day, to the next...

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There was also the time when I arrived for the lunch hour to take Mom down to the dining room, but she was in bed sleeping. Her caregivers let me know that she'd had a bath and that that process exhausts her. So I decided to return for the dinner hour. Mom was still in bed sleeping. So I just pulled up a chair and sat next to her bed, grateful to just be together.

And my mother's caregiver entered and asked, "Who's Don? Your mom was calling for Don in her sleep... 'Don, Don... Donald, dinner's almost ready'."

Don was my mom's fourth and last husband. They divorced seven years ago. I love Don. He is still alive and, at 97, is now living in Virginia near his daughter. We talk fairly regularly. And here, on this day, was my mother calling for Don in her sleep. This, after not her not remembering — in her waking state — who Don is for years.

The brain is so incredibly fascinating and mysterious...

And my mom continued to sleep for a bit, and then I became aware that she'd opened her eyes. "My darling." 

"Hi, Mom. I love you and am so happy to just sit here with you... Would you like to go down to the dining room for dinner?"

"No."

"Okay. Would you like to sit in your chair [in her living room] or have me help you with dinner in bed?"

"No. I've already had my dinner."

I knew that my mother hadn't eaten anything since breakfast. So, again, I just surrendered into what is. 

"Okay, Mom. I love you." And I reached out and held her hand and kissed her cheek. A smile swept across her face. And my mother puckered her lips and offered repeated kisses. Mom kept smiling and slipped back to sleep.

 * * * * *

March 2nd, 2020

Three days ago, Mom initially awoke from sleeping in her wheel chair when I arrived for the lunch hour. She smiled and we hugged and kissed. I wheeled her down to the lunch table where Barbara and Jean sat, both of whom I've known for several years now. Barbara said, "Hello, Nancy." I softly spoke in my mother's ear, "Mom, Barbara  and Jean are saying hello to you." Nothing. Her eyes had closed.

So I sat there, drinking my coffee, talking with these two other lovely women, and keeping an eye on my mother for any sign that she was ready to eat some of the food on the tray that I'd carried down from her room. In between conversations, I would ask my mother if she wanted to eat, I would tell her that I loved her, I would kiss her cheek and massage her arm and neck. 

Off and on Mom would open her eyes just slightly and I would offer her a small spoonful of her pureed lunch. And then I'd watch her drift back off to sleep. She did manage to eat 5% of her lunch, maybe a bit more.

Yesterday my mom was unable to wake up and eat when I again came to visit during the lunch hour. She sat in her wheelchair eyes closed, lips pursed tightly closed. We didn't even try to go down to the dining room. I simply surrendered into sitting there next to my mother.

Just a few times Mom would open her eyes slightly, she'd see me, she'd smile, and then fall back to sleep. I kissed her checks. And Mom, eyes still closed, made her repeated kissing sounds, returning many more kisses to me. Then she was back to sleep. Then her eyes would open again. "I love you, Mom."

My mom responded, "I love you."

Late stage Alzheimer's is painful to witness. And every day I also give thanks that I am able to witness, be with, stay open, and simply love my mother deeply exactly wherever she is at.

And she is leaving more and more. Bathing happens in bed, no longer in the shower. Toileting no longer happens in the bathroom and is only in her depends now. Whatever she eats is fed to her in her room by caregivers, except when I come and we go down to the dining room together. Her transfers require two people because her body is so stiff now. My mother's needs mirror those of an infant, unable to move or even turn over in bed, totally dependent upon others for all of her most basic needs.

Every day I give thanks for the caregivers who attend to my mother so lovingly and tenderly and with so much compassion and care. And every day I also give thanks that my mother is not suffering — there is no anxiety, no physical pain, no fear, no resistance to her own unique journey of dying.

And as everything else slips away, all that's left is love.  

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Why share these intimate, tender moments? Because storytelling connects us, reminds us of the value of vulnerability, helps our hearts to break open, and opens the doorway into dropping down into deeper truths of what matters most. And, always, I believe that that is a return to love.  

Death comes to us all, I believe, as the great teacher to live fully now, to be alive while we are alive, and to love deeply. For, truly, in the end, Love is all that matters.

Bless us all as we walk

each other home,

Molly