The Day I Took My Doctor Dad Gambling.

Posted on | March 12, 2014 | 8 Comments

My Dad and I Gambling (1995)

Mike Magee

Over the years, I’ve pretty much seen all sides of health care – doctors, nurses, managers, their families, their patients; unborn, born, young, not so young, old, really old; dying at birth, dying from trauma, dying from burns, dying from infection, dying from chronic disease, dying from cancer; north, south, east, west, middle; republican, democrat, don’t care, don’t know; for-profit, not for profit, government; generalists, specialists, corporatists, lobbyists; mentally well, mentally not so well, mentally terrible; loyal, disloyal, couldn’t care more, couldn’t care less.

My father taught me most of this – about life and about medicine; that medicine was a profession that required scientific curiosity, an empathetic nature, and an inexhaustible spirit, to be done well. I got that as a little boy, and he reinforced those principles at ever turn as I grew older and moved up the career ladder. So it was pretty surprising to learn how much he (and my training/experience) left out when he developed Alzheimer’s disease and my mother became his full time caregiver.

Marjorie Rosenthal, a pediatrician, in this week’s JAMA, has found herself in a similar position – a father with Alzheimer’s, a mother who is caregiving. Here are a few of her observations.

It’s Complicated:
“As a family, we spent the first few years after my father’s diagnosis talking about medications for Alzheimer’s (they exist but have limited effectiveness), the value of crossword puzzles for him (the data are mixed, but for a while we felt like we had to make him do them), day programs (some have movies and stimulating speakers, some have pickup and drop-off service), and how to tell the grandchildren about their grandfather. Despite our efforts and his outstanding health care, my father’s Alzheimer’s progressed.”

Caregiver’s Are At Risk:
“As my father’s care became a full-time job for my mother, I started to see changes in her that worried me. Last summer when I gave my mother a copy of Ann Patchett’s Run—a novel about family, race, and Boston politics—I was sure she would love it. I was speechless when she gave it back to me and told me she couldn’t concentrate long enough to read it.”

Alzheimer’s Is Scary
“If my father didn’t wake her up in the middle of the night while wandering the house, my mother would be awake worrying that she might not hear him when he got up.”

Less Is Likely More
“The cardiologist’s recommendation that we have my father’s pacemaker battery changed seemed reasonable….Until it wasn’t. My father came out of anesthesia yelling and flailing his arms. My mother had called me from the waiting room when all seemed well. Then she called me on her way to the recovery room when she had been asked to come ‘calm him down.’ She next called me from the recovery room, telling me she was watching him pull out IVs, yell, and try to hit whoever came close to him. I know the recovery team asked her to come in because they thought it would calm my father. But on the phone with my mother, listening to her describe how horrible and stressful watching my father had been, I couldn’t help but wonder about our decision-making process.”

What’s Needed
“What I do know is that I need my father’s physicians to start acting more like my mother’s girlfriends. I need them to try to recognize what my father and my mother need. My siblings, my mother, and I have had the hard conversations about my father. We know where the Alzheimer’s is taking my father.”

_______________________________________________

During one of the last long visits with my parents (they stayed at our home outside Philadelphia for three months when he had full blown Alzheimer’s), I decided to give my exhausted mother a break and take my father on an outing. Though it seems crazy now, I elected to take him on a 45 minute drive to Atlantic City and play the slot machines. Simple enough. I thought he might enjoy it and I thought he could do it. Step 1 – Put in a quarter. Step 2 – Pull the handle. Step 3 – Collect your money. But once there, it was clear, each quarter would require re-instruction. Still we persisted for 20 minutes. At which point, my father stopped, turned his stool, looked me in the eye with a very, very serious face and said, “Michael, I’m very concerned about your gambling problem.”

I gave him points for knowing my name, for lucidity, and for allowing me to buckle his seat for the ride home. Five minutes into the ride, he lost sight of who I was, declared that he had been kidnapped, and tried to punch me in the face as I drove down a high speed turnpike.

That’s Alzheimer’s Disease.

My father died in September 15, 1998, almost three years after his caregiver, my mother died on December 9, 1995 of metastatic ovarian cancer, after she ignored abdominal pain for 9 months because she was pre-occupied with caring for him.

That’s Alzheimer’s Disease.

My scientific curiosity was of little value in stabilizing or reversing the course of my father’s disease. Empathy arguably helped my mother, and softened the blow for my father when he was reachable. As for spirit, by the end that was pretty much drained for all us, me included.

That’s Alzheimer’s Disease, too.

For Health Commentary, I’m Mike Magee.

Comments

8 Responses to “The Day I Took My Doctor Dad Gambling.”

Bill Crounse, MD
March 12th, 2014 @ 6:29 pm

Mike,
Thanks for sharing your family’s story. My father also died of Alzheimer’s Disease (or actually a hip fracture and multiple small strokes in combination with Alzheimer’s). You really captured the all too common family dynamics associated with this terrible disease.

Hope you are well.

Bill Crounse, MD
jack goldberg
March 12th, 2014 @ 7:00 pm

Hi Remember Me?
SUNY upstate class of 1973

Hi Mike
I finally realized from the picture with your Dad that you are my long lost classmate.
Thank you for providing a realistic picture of what it is like to age badly.

jack and doreen
Mike Magee
March 12th, 2014 @ 7:21 pm

Hi Jack-

Of course I remember you and Doreen. In fact, I’ve been following your activities in Philly area over the years and all you have accomplished. You were, and I’m certain still are, a gigantic joyful spirit. Thanks so much for reaching out. Trish and I hope we get to meet again in person.

Best, Mike
Mike Magee
March 12th, 2014 @ 7:23 pm

Bill- thanks for the kind words. I continue to marvel at your good works. Hope our paths cross again soon! Best, Mike
Morgan Plant
March 12th, 2014 @ 8:24 pm

I recently read a book called Knocking on Heaven’s Door : The Path to a Better Way of Death, by Katy Butler. It was a memoir of sorts, but also had lots of useful information about planning and preparing for a better way to die. Her Dad also had Alzheimer’s and her mother was caretaker. One of the decisions they came to regret was installing the pacemaker, which kept her Dad going long after his mind was gone.
Mike Magee
March 13th, 2014 @ 8:44 am

Thanks for sharing this information, Morgan.
Sue Ross
March 14th, 2014 @ 8:48 am

I remember many crazy stories as Dad and all of us progressed through his disease. The understandable paranoia was difficult. One bright memory of mine was when he mistook me for a college friend and shared a persona that I had never seen before. There was misery and there was laughter all rolled together in those years as we all muddled through his disease. And so much shared love. That’s Alzheimer’s and life.
Mike Magee
March 14th, 2014 @ 2:34 pm

Thanks, Suzy! What we each remember does outlive the Alzheimer’s experience. As you said (in part) in his eulogy: “He was hard working. He was a man with heart. He was a gentleman. He was a busy man who did not ask much for himself. His pleasure and the only thing he seemed to need in life was Mom. And we all knew it. His busy life, the responsibility of raising 12 children and his love for Mom meant that none of us have memories of Dad dawdling away a day with us alone, but what we do have, straight to our very core, is what it means to be devoted to someone and what it means to love someone – and we know that because of Mom and Dad.” Nicely said!