You will die with Alzheimer’s

He was pale. His brow was damp. His blue eyes looked more blue for the tightening of his pupils. The Tardive Dyskenesia made his jaw cock side to side and his fingers drum rapidly. I could barely stand the sound of his dry tongue in his mouth, a response to heavy anti-depressants. For many, many months doctors and therapists had claimed, “severe depression,” but today someone finally said, “your dad has Alzheimer’s.”

The neurologist also said, “you won’t die of Alzheimer’s, you will die with Alzheimer’s. Our patients generally die of pneumonia when they become too sick to get out of bed.” He said “here is some literature,” and “come see me in two months.” He did not say, “I am sorry,” or “I know this is hard to hear.” He left the room. The silent neurology resident followed him like a strange lamb observing how flocks are slaughtered.

We drove home listening to the Beatles. I asked him if he recalled hearing them for the first time. He did. “Did they sound like something new?” He said they sounded “happy.” The first time he heard them was after returning from Japan. He was stationed in Okinawa as a Navy doc during the Vietnam War. “Will you write down your other stories for me?” Sure. “The Harry the Hat stories, and the one about canned peaches at your aunt’s house?” Sure. “And that bully you punched?” Yes. We laughed. He put his hand on my arm. He said, “I am sorry; I know this is hard for you.” He always said the right thing at the right time. I have never known another human who finds such ease in others’ feelings.

I took him home. He told mom. She did not cry. He reached out his hand to her. She sat, teacup in one hand and his hand in the other, disappearing into her oversized floral chair. He bent to hug her. I took the teacup. Her long, lean arms slung around him. I crept away. More tea.

I peeked in from the kitchen many minutes, but not a word, later. They had moved to the couch where he could lean on her. She was in the sun. He was in the dark, split into slats by thin bands of light creeping through the wooden shudders. I brought toast with too much butter like he liked it, like she complained about, and three fresh cups of tea. We said nothing I can recall. I haven’t decided yet if memory means more, or less, as of that day.

Then he got up to call his son. A credit to what the disease had not yet touched, he made up an excuse to get off the phone within minutes of delivering the news. He paused in the hall. When he returned to us, the room was dark.

“I need somewhere to collapse.” My mom and I stood, sweeping books and laundry from the couch, making way for him. “No; I don’t want to lay down.” He leaned toward me. I recalled suffocating my tears into his shoulder the first time he took me to hear the orchestra. His shoulders now slumped and subtly shook. Crying overtly would be a disservice to our forty-year history of just gently holding on.

He sat down, finally, like a child with both arms hanging between his knees. He put into words what most of us say with tears. He said, “I feel heavy things falling down on me.”

I finally got my nose pierced

Early this morning a car blew through a stop sign in front of me and I did a 360 degree skid getting out of its way. It didn’t even slow down. I chased the car down and got the license plate.

Soon after that I blew a speaker and fogged up my ears listening to Led Zeppelin.

Then I got my nose pierced!

Leaving the parking lot I nearly backed into someone and refused to apologize–what kind of nincompoop walks that closely behind a moving vehicle.

At the gas station, I stole a snickers bar because it said, “rebellious.” Come on–does anyone pay for that one?

I impressed some teen-agers with the speed of my car and volume of my bass.

I also got Lasix surgery and they threw in botox between my brows.

When I got home my child asked me for candy and I responded, “no.” He asked “why” and I yelled “because I am taking my ###@!! poop in peace.”

Then I went to take a one-day workshop on electric guitar and now I play. Like a boss.

On the way home, I illegally passed a very slow, dripping clean, white Mercedes while driving on a twisty residential street.

And I sang along to Supertramp so loud, they say I’ll need vocal node surgery (like Adele. Adele is so awesome).

Hopefully it will be a quick recovery, because I also got a call saying I made the cast of Ordway’s production of Wicked, coming soon!! Dream come true!

And coincidentally, I qualified for the extreme rescue division of the International Red Cross.

After I found out, I played the drums in my garage in a white tank top until I sweat like Mary Stewart Masterson. So. Inspiring.

And I dyed the ends of my hair five shades of pink and belted out, in my fast car, “Na na na na na na…she’s got the look” on my way to work.

When I walked into the Senate in a power suit and declared, “I’m selling your salaries to the highest bidder until you add inflationary increases to the General Education Fund,” they did it!

Since I was on a winning streak, I stabbed a snake fang into a book on Alzheimer’s and the disease oozed into the ether, like Voldemort in the Chamber of Secrets, only forever.

Then I perfected my conversational Spanish.

Then, I had an affair with Kendrick Lamar.

I put my name in the hat for Presidency.

And drove twelve minutes further, bought a ticket, and sat alone among strangers on a plane to San Juan, anywhere.

But I made it back for choir, where I sang my angst so loudly into Beethoven’s 9th that my fingers bled (paper cut).

I tucked in my kids.

And drank tea.

Some days I amaze myself.

 

 

My Dad is 80

 

Today Douglas Hedlund​, my dad, turns 80. I couldn’t find one picture of him without his arms around my mom or tightly holding my brother or I or his grandkids. He grew up in a farming family in Fargo. He was the first in his family to attend college. He served as a Navy doctor during Vietnam. He was a psychiatrist for 53 years. He left Abbott hospital when they wanted to restrict the length of his appointments and the amount of therapy he could offer patients. He toured churches giving lectures on becoming affirming congregations. He campaigned on behalf of later school starts, more hospital access for mental health patients and the ethical responsibility of mental health providers to accept Medicare and Medicaid. He also never missed a race or concert, not mine or my brothers.

I remember my brother and I used to have contests to see who could get him to laugh. He was often busy working, thinking or reading reading reading. He remains a lousy small talker. But if you’d like to discuss feminism, hone your decision making skills, attempt to solve the riddle of anxiety disorders or just tell someone your life story as he sits and listens deeply and pats your arm, he is your guy. He won’t judge. He will take your late night phone call when you can’t stop crying or worrying and he will always succeed in making you feel better–and he does not reserve this for his kids. Really, you can call him anytime.

OLYMPUS DIGITAL CAMERAIn his seventies, he reduced his private practice hours in order to work one day a week at Lutheran Social Services. He did it again when Tennyson needed infant care. He loves babies. Do other dads stay nearby and offer breastfeeding advice? With my parents doing childcare for me, I felt like I got to witness how they raised me–what a practice in gratitude.

Though cloudy with Alzheimer’s, I recently couldn’t help but call him when once again, I had to explain the news of a mass shooting to my kids. I asked, “Is the world becoming a more violent place?” Keep in mind this is a guy who can’t keep the days of the week straight these days

P1010049“Yes. There has always been hatred and extremism and war. But now children see it everyday. They have access to images and stories and videos because media and information have changed. It doesn’t matter if there is more violence in the world. Our perception of the world is more violent than it once was, and it is that perception that shapes our well being, our sense of safety and our mental health. I worry about that for children and I worry about access to guns. Talk about violence and their fears, but talk about peace too. Talk about solutions and let them know they are safe.”

Maybe it just doesn’t matter what day of the week it is today.

My dad also struggled with depression and anxiety. I asked him once if I could write about that–reveal that. He said, “We should all talk about our mental health struggles more.” I deeply believe that he would not have been as long in this world without my mom. They love each other fiercely and as they reach their eighties, appear to have somewhat exhausted themselves in the care of each other and their family and friends. With luck and persistence, he wooed my mom with a song. I believe that song saved his life.

My dad was not typical. He was not easy. He married levity and an easy laugh with the wisdom that he lacked it himself. Only in the company of children, laughing with my mom or on the golf course does his lighter side appear. And that is why Alzheimer’s, despite all we hate about it, has eased some of his burdens. It’s not so bad, after all, that he can’t get to the end of every troublesome thought. He smiles more. His laugh comes more easily. He will walk next to you now, not a mile ahead.

I know wedad bday 048 are losing a little of him everyday. I miss him sometimes after spending the day with him. We will miss his thrilling intelligence and stories of American history, adventures in Fargo and recollections of his cousins. Alzheimer’s feels some days like a sickening long goodbye. Alzheimer’s also has the potential to feel socially awkward. Luckily for us, nothing new there. A nurse recently said, “He seems to be growing more quiet and thoughtful. He didn’t want to talk about the weather.” My mom and I just laughed. Some days I’m angry that the universe paid him back for his service by afflicting his mind. But mostly, I am grateful he is turning eighty today and I am still his girl.

Butter Alone

I am sleep deprived. Three kids with coughs are taking turns in steamy showers, propped up on pillows. Cool air for the croupy one, a nebulizer for the wheezy one and snuggling for the dramatic one.

I am somewhat happy to comply, so long it’s shared with a domesticated husband and a cooperative dog (she keeps the foot of the bed warm when I get up to help). I am accustomed to working nights in this job.

My trouble isn’t the kids. It’s mom’s heart and dad’s memory that make sleep elude me once I am awake. Heart and memory and relocation, pain and loss and depression. The vultures flying around what they have left—the Vet benefits that I can only hope come through before the death certificate. The elder care attorney, the total lack of Alzheimer’s care, the heart valve clinical trial consent form. The appointments. The medications. The forms. The health care system that doesn’t seem to understand age or disability, of all things!

Art by Helen Boggess

Art by Helen Boggess

My brain colluded with my uterus the minute I was pregnant and still marches onward full of love, most days (and nights). But I didn’t see my healthy, strong youthful parents’ infirmity coming out of left field until it struck me sideways. They were still my best babysitters up until the day of my mom’s stroke. Though she recovered, her heart and her husband will not.

In the morning I set to writing over a bowl of soup and a delicious roll at the coffee shop that’s quieter than my house. I peel gold foil from a pad of butter and stop before spreading it. “Wait,” I think. Dad we are trying to fatten up: he eats two. Mom can’t take the cholesterol; she gets ½ a pad. Child one is vegetarian; does not apply. Child three hates butter; DO NOT APPLY TO ROLL WITHOUT INSANE CONSEQUENCES. But I may eat one pad of butter.

I spread it on the bread, dip it in the soup, and finish every yummy bit.

Then I remember. It wasn’t the butter at all. Today I was going to eliminate carbs.

Mindful Mess

IMG_0022_3Last night I learned that all the people of the world were going to die soon. Shortly after, a small fluid-filled vesicle appeared on my knuckle, signifying my vulnerability. I knew, when I went to sleep that night, I would die. I told one person, and she frantically set about planning my escape from death in a subplot of my dream. So I did not tell anyone else–I lived a day with the secret of knowing it would be my last. I felt peaceful. Weird dream.

Last week we made our yearly trek with our three boys and grandma and grandpa to our favorite YMCA family camp. Year after year it’s worth every minute of backseat fighting, carseat wetting and marriage-questioning-packing-rage. The people, the wilderness, the sauna, the campfires, the togetherness; all quintessential “vacation.” I should mention they take the children off our hands for three hours a day and return them happy and instilled with self-confidence and values–how great is that?

IMG_5760We’ve never before gone this late in the summer, and the northwoods fauna was acting strangely. Twice, little red squirrels crossed my path closer than I have ever witnessed. A chipmunk squatted in a ring of children and stuffed his cheeks with seeds. Loons danced with each other in circles on the lake. Dragon flies sped into our faces like bugs to a windshield. Even the moss appeared psychedelically green. Like the subplot in my dream, all living things were frantically preparing their escapes from portending death. Before the doom of winter, they exhibited the fiery flush of survival. 

And one creature went first; a virile Maple sapling. Before the daytime temperatures dropped, the creek water dried, the Arctic winds blew, and the geese gathered in flocks, she turned red. I looked at her, alone in her Autumn, and wondered what made her different than the other trees. Was it bravery? Enthusiasm? Was she anxious, like the crazed animals, to prepare for months of dormancy? The only thing distinguishing her from the other trees was her particular microclimate; the angle of the sun, the exposure to air and her particular access to groundwater. IMG_0027_5

Sometimes we act on our own lives; enter, rodent swiftly gathering nuts. And sometimes, the forces acting on us demand adaptation. Red, rising in our veins. And fluid, shunting to our core. In my dream, I was not going to survive. No one was going to survive. But I didn’t wake up with my heart racing; I felt relief.

Because I cannot survive another season of gathering nuts. I have become squirrel-in-Autumn; rushing important perilous crossroads, ignoring children gathering curiously about me, biting blindly at threats to my existence, heart racing. Its time to let that life die and be the little red tree, whose supportive microclimate helps her survive the changing of seasons.

Blahdy blah blah blah. I love this idea. I also love the idea of my house being clean, my children being polite and my career path being linear. We are so often bombarded with beautiful, lofty ideals we fall short of achieving.

IMG_0008_6After vacation, we visited with the therapist who is helping us cope with my dad’s Alzheimer’s. He recommended that my mom take a “Mindfulness” class. She wrote in her planner; “Mindful Mess.” She told me her local library had a class on “Mindful Mess.” She suggested I also consider a “Mindful Mess” class. I corrected, and corrected, and corrected her, until we giggled. And only then did I understand her genius. Somewhere in her subconscious, my mom invented something we all can achieve: “Mindful Mess.”

Ice Cream 0006_9This I can do!! Doesn’t it just give you HOPE? Its all the mindfulness you can muster, with a hint of reality and a dash of forgiveness. Its understanding that I can’t always change my messy microclimate, but I can adapt to it. Its acknowledging that seasons affect us and consistency will be rare. “Mindful mess” is the sweet spot between frantic red squirrel and glorious red tree. We know this place deep in our roots; its all the fun of finger painting and none of the restraint of the canvas. Survival, after all, is a messy and artful thing.

A Poem for Gwen on Mother’s Day – 1981, by Doug Hedlund

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I.

“Next year will be better,” –it was that kind of year.

You took what we offered, and made do.

Not always with cheer–not that kind of year.

II.

You still look tallish, fresh and pretty

Not many women look good in “pretty” anymore–

but you do.

Like a blue and yellow flower. We need flowers this kind of year.

III.

You still sound good in the morning, telling me

not to be discouraged

(But that’s what mothers do for children!)

Oh well, it was that kind of year–mornings;

even evenings.

IV.

Next year will–is already–better.

Because we found out who we needed and

who disappoints us the most and that

they are the same person.

And that’s why now is better–we

are still here together, knowing things

like that.

V.

Mother’s Day always confused me

(even more than Father’s Day

embarrassed me)

But now I think I understand it better.

You’re my wife showing me how to

be strong, and caring for our children

No matter what kind of morning

evening

or

year.

best ma pa

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