THE BLOG
11/11/2014 01:29 pm ET Updated Dec 06, 2017

Mom's Not Dead Yet... Living in the Moment With Terminal Illness

I cried all the way home from San Diego. Monday morning I learned of the death of Tom Magliozzi, one of the beloved brothers on NPR's "Car Talk" show. News reports said he died of complications from Alzheimer's. Monday afternoon I spent with my 86-year-old mother, who is seven years into her own Alzheimer's journey.

Every Monday I drive to San Diego from my home in LA to spend a day or two with Mom. Most weeks are fine -- I take her to doctor's appointments, take her out to eat, take her shopping, and sometimes just take her for a drive.

But other weeks I find it hard to be with her, and this was one of those weeks. I noticed she is getting increasingly frail and unsteady on her feet. She has forgotten how to get into the car. Her conversation is mostly gibberish now, though I can still figure out what she's trying to say because I know her so well. I noticed that her skin is becoming translucent, like a ghost. Feeding herself is more difficult, so I feed her as I would a toddler. And this week she soiled herself while we were having lunch in a restaurant -- and was completely oblivious to her accident! She's lost the ability to tell me when she needs to go to the potty.

That evening, when I left her at the board and care home where she lives, she was sitting on the edge of her bed, mouth agape, staring off into space. I snuck out the door because I didn't want her to see my tears begin to flow. They came in a torrent as I drove back to LA.

"I'm grieving," I thought to myself. "My mother is dying. Alzheimer's is taking her down -- slowly, ever so slowly. And I am grieving."

On the two-hour drive home, I called my friend Kathleen, whose father is in the final stages of Parkinson's disease. Kathleen takes care of him in the nursing home where he moved three years ago. I knew she would understand. And of course, she did.

Just the day before, she had spent the afternoon with her dad, who was crying uncontrollably. His mind is lucid but his body no longer functions the way he wants it to. He can't speak, feed himself, or move from bed to chair or bed to bathroom on his own. He can't perform the most basic acts of self-care. Sometimes he gets depressed and cries.

Kathleen and I often call each other for support. We have learned that that which is shareable is bearable -- our elder care burdens are lightened when we talk about them. Sometimes we speculate about which is worse: to have your mind intact while your body deteriorates, or to lose your mind while your body is healthy? Of course, such speculation is pointless, because we don't get to choose the disease that will ultimately kill us. But we still talk about it sometimes, as if in some vain, superstitious hope that we might be able to influence our destinies by expressing our preference for one disease over the other. It's crazy, I know. Grief -- and fear -- make people do crazy things.

As Kathleen and I finished up our phone call, she said, "Let me tell you what my husband Jason said to me yesterday when I came home upset about my dad's sobbing. He said, 'Rather than talk about how sad you are to see your dad dying this way, perhaps you could say that you're sad to see him living this way.' Jason was so right. My friend Patricia said something similar to me years ago when she had cancer. I was always crying and distraught, and Patricia would say, 'Kathleen, quit killing me. I'm not dead yet. I'm still here. Quit killing me off.'"

"Oh my gosh," I said. "That's so true. I'm acting as if my mother is dead already. I need to remember that she's still alive!"

"Yeah, me too," Kathleen laughed. "I have a tendency to kill people off long before they're dead."

There is still plenty of life left in Mom... She talks constantly, to anyone and everyone; she enjoys her food, especially sweet treats like peppermint candy and cold, fizzy cola; she loves to ride in the car and point out all the red bougainvillea so abundant in San Diego. She loves to watch "Animal Planet" and the Cooking Channel on the big flat screen TV I bought for her room -- she talks to the TV as if she's the director of the show.

Mom's face lights up when she sees me. She tells me she loves me. We hold hands when we're going places in the car. She smiles as I stroke her hair, and I pet her as if she were my puppy. She closes her eyes when I rub her shoulders. "Mmmm, that feels good," she says.

I might be in emotional pain, but my mother is not. She is happy, comfortable, and cheerful. She lives in the moment and enjoys simple pleasures. The Alzheimer's has erased all her bad and she has nothing but good things to say about others: the ex-husband she bitterly divorced, the sister she didn't speak to for decades, the friends who disappointed her or hurt her feelings over the years. I must admit, Alzheimer's has brought some surprising blessings.

All of Mom's caregivers agree: She is a happy camper. She loves to say silly things and make people laugh. When the doctor asks, "How do you feel, Mrs. Gallagher?" Mom holds up her hands and quips, "With my fingers." Her favorite expletive is "bullshit" and she loves the shock on people's faces when she says it. She giggles like a naughty little girl with a delicious swear word.

And Mom loves to flirt. Oh my, does she flirt! "Do you have a girlfriend?" she asks her physical therapist Jeremy, a handsome guy, 50 years her junior. Wherever we are, if a man appears on the scene, Mom instantly transforms into a flirtatious vamp. It doesn't matter if the man is young or old, tall or short, fat or skinny, black, brown, or white -- Mom just loves him -- and she lets him know it!

My mother doesn't think about death -- she isn't worried about what lies ahead -- she's just living her life. She is fully present in each and every moment. She talks when she has something to say, closes her eyes when she's tired, asks for food when she's hungry, and pays attention to whatever is in front of her. She reminisces about her past and enjoys sharing the fragments of memories that flit across her consciousness. She is very much alive.

As Kathleen reminded me, I need to stop killing off my mother. I have the rest of my life to grieve after she dies. For today, all Mom wants is for me to be with her... now.

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BJ Gallagher is a sociologist and author of 30 books. Her latest is "It's Never Too Late To Be What You Might Have Been." (Viva Editions; 2014)