• July 29, 2014

The Road to Retirement: Caring for an Aging Parent

Those of us who are approaching retirement frequently have to wrestle with another wrenching set of issues: caring for an aging parent.

My dad died many years ago, but my mom was still kicking at her 95th birthday party in April. But not kicking very high. The best she could manage was a half-step shuffle. She moved from rural New Jersey, where I grew up, to Albuquerque, N.M., when she was eighty-something. Not for the weather, though she liked that a lot. I had asked her how she would manage getting around in rural New Jersey when she couldn't drive any more. She thought about it a little, then decided to move to a city thousands of miles away. She was kicking pretty high in those days.

It was a great move. She was an artist, both commercial and fine, and she made many new friends and colleagues there and even found a little work. Seven years ago, she decided home ownership was too much of a strain so she moved to a continuum-of-care place—a two-bedroom apartment looking at the distant mountains, one meal a day provided, wellness center down the hall.

At first she felt out of place—"it's full of old people and they all look alike," she told me on the phone. But she soon learned to tell them apart and made some friends. She had various health problems over the years, not surprising for an 80- or 90-year-old woman, and it became increasingly difficult for her three children to help her manage. One of us lives in the upper Midwest, one in upstate New York, and the third is in Asia most of the time, so our contacts with our mother were mostly via telephone and e-mail.

I suspect that many academics my age face that problem. Most of us move far away from where we grew up, after all, and families scatter. Many of our parents have moved south for warmer weather. When Mom told us all her plan to move to New Mexico, my sister-in-law observed that many older people like to move closer to their children. "I don't want to live near my children!" Mom said. So much for that. But there was a price.

Last August she tripped in her apartment and broke a leg just above the knee. She couldn't reach the telephone and had always scorned the "I've fallen and I can't get up" buttons, so she laid on the floor all night until a maintenance man heard her call and brought the paramedics. My sister came right away and stayed with her through a surgery to pin her leg together and initial rehabilitation. The pin didn't work, so she required another surgery and more rehabilitation, which kept her bedridden for months in the hospital or the rehab center where she lived.

In January, a local friend alerted us that Mom might be in trouble. My brother and his wife flew from Tokyo within days and were shocked at her condition: listless, depressed, not interested in them or anything else, asking "what's the point?" She was recovering from pneumonia and despaired of ever getting back to her apartment. My brother and wife hired a local care manager, stepped up her rehab schedule, and convinced the facility manager to replace the carpet in Mom's apartment so that she could navigate it with a walker. But then they had to go home.

Within three weeks, the carpet had been changed and she moved back into her apartment, with lots of paid help. My sister visited for a few days and found her in much better shape and with a somewhat better attitude. Her leg healed, but the muscles were stiff as boards and wouldn't bend so walking on her own was impossible. Still, things were looking up.

Three weeks later, I visited. She was better yet—walking the halls daily for exercise (with her walker, of course), cooking her own breakfast and dinner, and getting stronger. I took her to the doctor, who said "you're 100 percent brighter than the last time I saw you." We celebrated by going for lunch, with martinis, one of her favorite events. The entire excursion took more than six hours, but it was fun for her and satisfying for me.

In April, the whole family—four generations, almost 20 of us, including a new bride she'd never met and two recent babies—gathered for her birthday. It was a great party and she enjoyed it, though not very actively.

In May she was hospitalized again with breathing problems. Her three children flew in to hear the diagnosis: congestive heart failure, which was causing her breathing problems, plus a couple of bedsores with MRSA infections. A wonderful palliative-care doctor explained to all of us that her heart would not improve and neither would her breathing, though they could certainly ameliorate her difficulties in the short run with a breathing tube. "I can't live like this!" she told us. "How can I die?"

She went into hospice and died shortly thereafter, quite peacefully, with her children around her—just as she had prescribed. It was painful and wrenching but, in retrospect, we were fortunate in many ways. Mom decided when, where, and how to die. Her children and many of her grandchildren were able to say goodbye. She kept her faculties to the end and could say goodbye to us. It was a good death.

What have I learned that is relevant for other academics approaching retirement?

First, make crucial choices early. Help your parents decide how they wish to live as they become increasingly decrepit and dependent on others. Do they want to live with their children, in some form of assisted living, or in their own home? Help them consider how they wish to die: Do they want the doctors to use every device possible to maintain their lives, or would they rather refuse breathing and feeding tubes and resuscitation?

Those conversations aren't easy. We tried for years to talk with Mom about a living will, with little success. Persist, as much as you can stand to; it will help you avoid conflict later on. Once those decisions are made, share them with your siblings and other potential caregivers. Write them down. And begin the process of making the same decisions for yourself.

My mom made most of those choices, but usually at the last minute and without making them explicit to her children. It worked out, mostly because she avoided the dementia that afflicts so many people her age. But I shudder to think how three siblings who do not always agree would have dealt with making end-of-life decisions for her, without her involvement.

Second, understand that medical care for the aged is frequently quite poor. Mom lived in a wonderful apartment with good food and great services—but the doctors and nurses on site or on call were mediocre to scary. At one point last winter she had prescriptions for 21 medications, some of them conflicting. She took low doses of OxyContin for pain for five months; no one noticed how listless and depressed it made her. No one noticed that the Advair she took for breathing problems was affecting her vision. My sister took her off both drugs when she visited in February; otherwise she would have continued to spiral downward.

Colleagues who study health care tell me that this is a universal problem. Geriatric medical care is simply not very interesting, challenging, or remunerative, so it gets little attention and attracts the least competent providers. So beware: When your parent needs medical help, you should be there to monitor care. And make sure you have access to quality care as you age.

Third, consider geography. We could have provided much more assistance if one of us had lived closer. My mom made an explicit and emphatic decision to live in New Mexico, and the rest of us are more or less placebound. Still, none of us thought much about the consequences of our particular geography. So think about it, for your parents and yourselves.

Fourth, count your parents' money and your own. Getting old and dying is expensive. Academics usually have wonderful retirement plans, but our parents frequently do not. Mom almost outlived her resources, and my siblings and I were holding painful conversations about what we were willing and able to contribute to her maintenance when she died. It's better to have those conversations early rather than late, no matter how awkward.

Fifth, help your parents discard or recycle as much of their belongings as possible and designate recipients for the rest. When Mom sold her house seven years ago, we spent many days helping her sort through a lifetime of art (her own and others'), furniture, books, and all the other stuff that collects in a house. We sold or gave away a lot, and threw away more, yet we had to do it again after she died. Some of her stuff had real value, some was of family interest, but most was useless junk that she could not bear to discard, who knows why? Distributing the valuable items was relatively painless for us, but we all know families who have been torn apart by disagreements over who gets what.

How does her death affect my own retirement plans? She was the last living parent for me, my wife, and any of my siblings or their spouses; the last buffer between our generation and eternity. It's taken a few months for that brute fact to sink in, and it's given some impetus to my planning. So I've decided: I'll complete the commitments I've made for this academic year, and then retire.

J.C. Creighton is the pseudonym of a director of the grants office at a small Midwestern university.

Comments

1. dknapp00 - September 03, 2009 at 08:46 am

The scenario painted here is all too common, including the stockpile of 21 prescriptions. While not yet common, many pharmacists now focus on geriatric medication therapy, helping elderly patients make the best use of drugs. Because the elderly typically have more complicated medical problems and use more types of medications, colleges of pharmacy have programs and faculty specializing in geriatrics. Nursing homes are required to have consultant pharmacists on their staffs, and pharmacy schools can be good sources for referrals. The right pharmacist can be a big help in coordinating care among specialist physicians.
-Dave

2. berno - September 04, 2009 at 12:03 pm

When I got my PHD and could apply to become a lecturer,I had a sportive chance to get a job only in universities very far from my parents'home and their health was fast deteriorating. I engaged in an exercise of damage limitation. My mother could end her life at home reasonably well attended although they were living in a removed village in the Alps. My father who had suffered several strokes and was a Parkinsonian survived my mother at home for a couple of years. When keeping him at home meant taking an unaceptable risk we moved him to a place as close as possible to the family farm when he came back a day a week.
The arrangement has implied an intense use of the telephone and building up a network a reliable network of caring friends and helpers which I visited every week. Via the telephone I kept in Charge with my "agents". A person was paid to attend him during the day. Need I say my bank account suffered severely, but I think I had a reasonable measure of success in limiting damage.
berno

3. jobrien - September 08, 2009 at 01:39 pm

Being there, doing that.

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