Nancy and Barbara
Caregiving

My Sister's Lungs, Part Five: We're Still Waiting

Editor’s Note: In the final part of a five-part series, thirdAGE contributor Nancy Wurtzel (at right in the above photo) shares the ordeal her sister Barbara (at left in the above photo) is undergoing as she waits for a match for a lung transplant. Barbara’s situation is complicated by the fact that her husband, Jim, has Alzheimer’s. Additionally, the sisters’ mother is suffering from dementia as well. Here is the story of a family on a frightening, grueling healthcare journey of the kind that will be all too familiar to millions of Americans. You can read the first installment here, the second installment here, the third installment here and the fourth installment here. For more information about the “organ transplant gap,”  click here.

By Nancy Wurtzel

I can’t believe it has been nearly three months since I began writing this series about my sister’s lung disease.  In some ways, it feels like a few days but in other ways it feels like years.

We are still in a holding pattern: Waiting for a call from the University of Minnesota, telling Barbara that a lung transplant match has been found.  This will mean she will have the chance of a longer and hopefully healthier life.

When Barbara was first added to the transplant list, we lived in a state of high alert, thinking about little else and not making plans beyond a day or two.  Every time the phone rang we’d flinch and hold our breath.  But we quickly learned it is exhausting to maintain such a wired, vigilant state.  Instead, waiting has morphed into our new normal, and we’ve been able to relax to some degree.  I never thought that would be possible, but it is.

While we wait, life keeps going forward.

Spring has arrived in the upper Midwest, and that means lots of yard work and outdoor activities.  Most days, I walk my Goldendoodle, Callie, and twice a week I squeeze in a yoga class, which helps alleviate stress.

I also continue writing, handling assignments for clients and creating original content for my blog, Dating Dementia, which focuses on Alzheimer’s and caregiving issues.

My 23-year-old daughter, Katie, a recent college graduate, is living with me.  We enjoy many of the same interests, like history and reading, and find it fun to share and discuss books.  Over dinner, we’ll also chill out by watching episodes of Gilmore Girls on Netflix.  I never saw the series when it first aired, so we are playing catch-up. Since Barbara was added to the transplant list, Katie and I have logged three seasons.

Barbara also remains busy.  Her doctors want her exercising several times a week at pulmonary rehab, plus she has a series of ongoing medical appointments.  Since her health is on a steady decline, Barbara now sleeps at least 10 hours a night, and often needs to rest or nap during the day.  She’s on oxygen full-time, always tethered either to a big concentrator that sits next to her bed or a portable contraption when she is away from home.

Coordinating the care for Jim, her husband of 26 years also consumes a lot of Barbara’s time and energy.

Jim was diagnosed with Mild Cognitive Impairment several years ago and is now in the moderate stages of Alzheimer’s disease.

Eighty years old and a large man – in his prime he stood a towering 6’ 8” – Jim is no longer ambulatory.  In addition to his memory loss, Jim has severe neuropathy and needs help with all daily activities.  A year ago, after caring for him at home for several years, my sister made the difficult decision to move Jim into assisted living.  Following a recent hospitalization, he was relocated to a skilled nursing home, which we hope will better accommodate his declining mental and physical health.

Even with all of his health challenges, Jim remains an engaging and endearing man.  He’s so surprised and happy when he has a visitor and delights in the smallest of kindnesses.

During the past few months, my oldest sister, Susan, has been staying with Barbara.  All three of us grew up in Minnesota, but one-by-one we relocated to Southern California.  Susan was the first to move there, back in 1977 and is the only sister who still calls Los Angeles home.

Recently retired, Susan traveled to Minnesota thinking the transplant would surely take place soon.  It hasn’t, so she is heading back home shortly and will return at some point after the surgery.

We’ll need her help.  Doctors have advised Barbara that following transplant she will round-the-clock care for three months.  Throughout this time, she must avoid crowds of people and certain environments, including Jim’s care home, where she might come into contact with viruses or other illnesses that could cause an infection.  Jim’s care during these 90 days will fall to his three grown children, who do not live close by but have agreed to fly in for a week here and there to help their dad.

There are a lot of moving pieces involved in caring for my sister and her husband, and it is not easy or straightforward.

We have a small immediate family – it is just us, the three sisters, and my daughter. Consequently, so much falls on just a few people.  There are days when I get a little depressed or overwhelmed.  When this happens, I focus only on the task at hand.  It’s possible to cope if I don’t think too far ahead.

Even so, I wouldn’t describe this time in our lives as doom and gloom.  As a family, we’re not somber people.  We love to laugh and we’re not above enjoying some dark humor about this big life event.  In fact, tonight we’re having pizza at my house, along with a few beers (although only a very small glass for Barbara) and a raucous game of cards.  It would be a great night for a call from the transplant coordinator, telling us they have found a match.

Fingers crossed.