For About and By Caregivers
A Different Vow

By   Kate Arnold


"Do you know where my husband is?  Because he's a good one and I'd hate to lose him."  This is her third husband, so Holly, my 80-something-year-old patient, has room to judge.  I tell her he's reading his book downstairs and she says, "He's such a patient husband."  She asks this question every five minutes of her two-hour-long visit.  She doesn't know what city she's in, but she know she's in love with her husband.

A year and a half ago, I was finishing my post baccalaureate premedical program at Georgetown.  I was twenty-four, taking physics with 19-year-olds, and trying to find a job for the year I would spend applying to medical school.  In an effort to convince myself that the work was worth it, I read Final Exam by Pauline Chen, MD.  Dr. Chen says that good doctors recognize when death is inevitable and then strive to make the transition to death more comfortable and peaceful.  Believing her, I decided to spend my year learning how to be with patients with hard diagnoses. I got a job as a research coordinator for clinical trials for Alzheimer's disease, which is how I met Holly.

It struck me that Holly was so in love with her husband when she had lost touch with every other part of her life.  In marriage vows, you promise to love each other forever.  In over 50 percent of marriages, people are unable to keep this promise, and that’s both frightening and depressing to people in their twenties considering marriage—myself included.  And yet, as I watch, my patients and their spouses face the hardest thing I can imagine together, in the process, they restore my faith in marriage as a sacred commitment.  To love another in sickness and in health is a profound promise; and yet, it’s the tip of the iceberg when Alzheimer’s is involved.  On your wedding day, you didn’t promise not to get mad when your spouse forgets a dentist appointment, forgets your wedding anniversary, forgets how to converse, forgets your name.  And if you're the one with Alzheimer's you didn't promise to never give up and to do your best to fight the disease you’ll eventually lose your life to.  With a diagnosis of Alzheimer's, these are the vows some choose to make, spoken or unspoken.  And patients who can do that save their marriages.

Interspersed throughout the struggle are funny moments, and the only way to keep your sanity is to laugh.  The patients tend to be disinhibited and, given that most of them were somewhat proper 80-year-olds, the things they say can be unexpected.  When I asked Mr. O’Farrell, my Irish patient, if he helps out with chores, he said, "Well, sometimes I'm an ass."  Later in the visit, I asked him to address an envelope to himself and he wrote, "Mr. Wonderful.”  I made a copy of the envelope and taped it above my desk to keep me smiling.  One caregiver, who’s usually heartbroken at visits, laughed while telling me that on Valentine’s Day, two beautiful bouquets arrived because her husband accidentally ordered flowers twice.

But the funny moments fade because they showcase how impaired the patients are becoming, and then it’s back to reality.  When I got the job, my boyfriend at the time asked me if I would be able to handle it.  It was a valid question and I wasn't sure, but my goal was to learn to handle it and, I hoped, to learn to support patients and families facing Alzheimer’s.  I knew the job would make me cry, I knew sometimes I would feel heartbroken, and I knew I would often be emotionally overwhelmed.

And that's been true because just as there are funny moments, there are also powerful moments that grant you more insight than you ever wanted into what it’s like to live with Alzheimer’s.  Like when Ralph told me Helen woke up disoriented one day, asking when it was time to go to school; and then sat on his lap and cried on his shoulder because she was disoriented and scared.  Or a husband who simply stated that within two years, at the age of 54, his wife’s mind will be “shot.”

I never expected to be so emotionally engaged with my patients.  When I started the job, I used to say hello and chat congenially; I now hug almost all them.  It might seem unprofessional, but I'm not their doctor.  My job is to make coming to their study as enjoyable as possible.  That’s not my job description, but it's how I do the maximum amount of good.  Now I'm invested in my patients’ fights, while knowing they will most likely all lose.

My scariest moment came when I identified fully with one of my patients.  I empathize with all of them.  They tell me, after cognitive testing, they they're astounded and terrified at how easy the questions were and how they didn't know the answers.  They read books about the progression of Alzheimer's and learn what will happen.  But Martha was different; Martha was who I wanted to grow up to be.  I would love to be her.  She was tan, athletic, casually elegant, and ate healthy foods, but always caved when chocolate was involved.  She had the family life I hope to have at her age; she had two grown kids, one granddaughter, and a husband who was in love with her.  When I first met her, she was funny, light-hearted, kind, gregarious, and happy; but at 55, she has early onset Alzheimer’s.  At her last visit, Martha couldn’t recognize the food on her plate.  In the hall, she had trouble following me; and in the bathroom, she couldn’t find the soap or faucet.  I’m sure 15 years ago, she thought these would be the best years of her life.  She had set herself up for it; it was time for her to travel and spoil her grandkids.  Instead, she’s slipping away.  I looked at her and I wondered what she would have done if she had known this was coming and I felt overwhelmed.  I could be her; this disease can happen to anyone and that’s how I ended up at my mom’s house crying.

My mom and I were watching To Gillian on her 37th Birthday, which is about David, a man whose wife died two years ago, but every night he goes out to the beach where he can talk to her.  Both David and all of my patients and their spouses have been robbed of the future they wanted.  My patients and their families are losing the 20 years of vacations, new babies and quality time with each other they had expected to have.  And they’re living in a dual reality.  The person they love is still right in front of them; and yet, their partnership is ending and every day that person is a little more gone.  I cried on the couch and couldn’t breathe for what everyone at work has lost and what they will lose.

What gives me hope is seeing my patients fight for their love.  I never expected to learn so much about marriage; but watching my patients fight for their marriages has been my favorite part of the job.  My parents got divorced when I was in third grade because, simply put, it just wasn't working.  While I'm not second-guessing the decision, it’s healing for me to see couples face huge obstacles together and win.

Martha and her husband John are terribly in love.  Just as Martha’s visit is ending, John walks into the room.  He usually goes and works while she stays at the hospital, stopping by to have lunch from the cafeteria with her.  As John walks into the room, they smile at each other and their eyes twinkle.  John asks her if she’s ready to go home, she says yes, and they get ready to go.  Martha can’t tell which shoe goes on which foot, so John helps.  They joke as John puts her shoe on; and if a stranger walked by, he would surely think it was an act of romance, not of necessity.  John sees everything that’s happening, but they’ve chosen to live together in good spirits despite the circumstances, and they convince me that it is better to have loved and lost than never to have loved at all.  As they get ready to leave, his hand brushes her stomach with ownership and tenderness as he tickles her.  With that one sign of affection, I see that they’ve won the battle.  They will love each other until death do them part and that gives me hope. 


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