A daughter’s journey through her father’s dementia

By Marta Burton

I wonder how my mom does this, how she doesn’t lose her mind completely, too. I wonder if she ever thinks, “I didn’t sign up for this.” I’m sure she knew that someday she would lose my dad, that he, being so much older, would probably die before she did. But this is something you don’t prepare for: the plaque and tangle, the ever-advancing cell by cell degeneration of your beloved’s brain. The slow, seeping loss. The anger. The grief.

Marta Burton & father LouI cry a lot when I go to yoga classes. When I start to move and breathe deeply, when I close my eyes and feel, when I move through the postures, suddenly I am overwhelmed with emotion. I’m standing in Warrior position and crumple to the floor, curl myself into child’s pose and convulse with the hot tears of a girl. My father. My dad. My hero.

I don’t know if my emotion is sorrow or gratitude. I’ve always adored my tall, stoic father: Major Lou L. Burton, Jr., professor, poet, lover, husband, father.

Fifteen years ago, an aneurism began to erupt in his brain. One life flight, three months, and seven brain surgeries later, he was released from the hospital and sent to a skilled nursing facility where we kept 24-hour watch. He was a skinny as hell and dramatic scars sliced across both sides of his shaved head. His brain was badly injured. He had no idea where he was or what had happened. He was shaking all the time and didn’t know what that nasty thing up his nose was…the feeding tube. I remember half sleeping in the little bed with him, holding his hands so he wouldn’t pull it out or try to walk. When he slept calmly, I would do yoga while keeping watch. Mom and I and several of their friends took turns staying with him. Once, while mom was taking a shift with him, I went to her place to rest. It was 3 a.m. and I spilled an entire glass of red wine on her white carpet. I took it as a sign that I should stop drinking.

I got used to taking him to the bathroom and eventually got up the nerve to tell him he needed to take a hold of himself and aim. The day he yanked the feeding tube out of his nose and threw it in the toilet, we knew it was time to get him out of there.

We took him home and fattened him up and watched that gorgeous thick hair grow back. And his mind came back, too, a good part of it. For a long while he only remembered his distant past and sometimes saw people who weren’t there…his sister Barbara in the back seat, his first wife. But he always knew us. Eventually, as his brain healed he learned to read and write and even drive again. It was pretty good for a long while, though he never recovered his short-term memory completely nor his ability to direct his own life. He has been dependent upon my mother to create and direct his days. His cognitive abilities improved for a few years, evened out for several more and then began the slow decline. He began to lose his vision, gave up driving after a small incident, gave up reading and within a couple of years he was completely blind.

And then the real descent began. At first, I thought it was the sensory deprivation…not seeing, short term memory loss, not hearing well…no wonder he didn’t know what was going on. But it was more than that.

He gets lost. When all is quiet and no one is talking with him, he drifts from place to place, time to time, in and out of memories and dreams and when he wakes, he is lost. He often asks, “Where are we?” Once he has the answer, “You’re here in the condo, dad, with Matt and Lou and Tascha.” He rejoins the party…”Oh, how wonderful…” and hangs on to the present for as long as he can. He no longer reads. He no longer writes. He no longer looks in wonder at the mountains or counts the antelope on the prairie. He needs to be reminded that he’s holding a cup.

It seems that he sleeps most of time, but I think he’s having fantastical adventures traveling through parallel universes where various life experiences come together in marvelous dream-like ways. He’ll tell you all about them if you let him. Whenever he is in a mood to talk about what he’s been up to, I encourage him.

Sitting on the porch in mom’s Capitol Hill condo last Autumn, he invited me on his journey saying, “What Italian village is this, Marta?” I answered, “Florence, isn’t it wonderful? Buonasera, papa. Shall we order a cappuccino?” (Of course, this is what we’ve always done…me and dad. We drink coffee in cafes and talk about our latest project… the play he’s writing, the show I’m producing.) I order our drinks, go to mom’s kitchen and make them for us. It is a beautiful, noisy day on the corner of 12th and Humboldt St. in Denver, Colorado, but what a stroke of luck to be drinking cappuccinos at a sidewalk cafe in Firenze. Sipping his coffee with a quivering hand he asks me, “What shall we have for dinner tonight?” I’m not sure what to order, so I go inside and find my mom’s “Florence” cook book and start reading recipes out loud to him as if it were the menu. We make our selections. I’ll have pizza and he will have bistecca all fiorentina.  It doesn’t matter that our orders never arrive. Within a few minutes he’s forgotten where we were.

Alzheimer's photo of Marta and LouIt is now the summer of 2017 and my dad has what I can certainly describe as “dementia.” I see him often, always telling him, “This is Marta, dad.” And he almost always says something like this: “Oh, my darling. Oh, my beautiful daughter. I love you, Marta.” I ask him about his day and he tells stories of wild adventures…directing the troops, giving a lecture, riding a train with a group of dancers. Mostly, now I like to sit quietly cuddled against him, just being. I used to feel guilty that I wasn’t engaging him in conversation, but have decided that he knows that this is the best I can offer. Once in a while, he forgets who I am, thinks I’m his wife and gets a little fresh with me. I say, “Daddy, it’s Marta.” He immediately corrects course and says, “Oh, Marta. You’re a good girl.”

He is awfully frail, utterly blind and constantly in need of my mom. She feeds him each bit of the food that she cooks. She walks him to the bathroom more times a day than she can count. You’ve got to face him, help him stand up, put his hands on your waist or shoulders and walk backwards, holding him upright as he shuffles along.

Yesterday his right leg didn’t know what to do any more. He couldn’t command it to straighten and his tall skinny body kept falling to the side. I said, touching his right leg, “Dad, try to straighten this leg.” He couldn’t and asked me, “What’s happening?” It was the first time that I wasn’t sure I could get him safely across the room.

We got to the sofa and I curled up against my sweet, trembling father. His arms are wrapped around me and mine are wrapped around him, holding his hands still. I tuck my head against his bony shoulder. I wonder how many more moments like this I will have.

I wish this would be our last. I wish it could end soon, that he could be released, that mom could be free, that we could all be free. I don’t want to see it get any worse. I don’t want to see him lose any more of himself. I don’t know how much longer my mom can do this. Her strength amazes me. Her heart pierces mine. I witness the depth of her loss and the power of her love.

Khalil Gibran wrote: “Your joy is your sorrow unmasked. The deeper that sorrow carves into your being, the more joy you can contain.”

Mostly I feel exhausted, but when I melt into tears early in the morning or on my yoga mat, I feel the truth of these words: “When you are sorrowful, look again in your heart, and you shall see that in truth, you are weeping for that which has been your delight.”

(Marta’s father passed away in late 2017.)

Marta’s epilogue: During our difficult and beautiful journey alongside my father, my family benefited from the Alzheimer’s Association programs and services, especially those for caregivers. I’ve been inspired to volunteer for the Association through their SPARK! program, singing music that resonates and connects with caregivers and their loved ones. So many families have been transformed by Alzheimer’s disease or dementia and there are many stories. To learn more, go to www.alz.org/co or call the free 24/7 Helpline at 800-272-3900.

Marta Burton has starred in critically acclaimed concerts with the National Symphony Orchestra at the Kennedy Center as well as other prestigious U.S. and international venues. Since moving to Denver from New York several years ago, she has been creating meaningful programs that awaken memory, uplift the heart and honor history. Her shows have been brought to venues across the Front Range including the Ellie Caulkins Opera House, Swallow Hill, Chautauqua, St. John’s Cathedral, the Mizel Museum, Temple Emmanuel, the Lone Tree Arts Center, Lannie’s Clocktower Cabaret, the Boulder Theatre and dozens of others. She is resident advisor for Balfour Senior Living in Louisville, CO. Her father, Lou Burton, Jr.’s struggle with Alzheimer’s-related dementia has helped inspire her career as well as her leadership of Balfour’s team in the Sept. 15 Walk to End Alzheimer’s. To support the team, click here.

One thought on “A daughter’s journey through her father’s dementia

  1. A true attestment to this horrible disease snd i felt every feeling she felt with her dad , this story was my life and with great sadness , thank you. For expressing what i felt . I am sorry for your loss

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