When Family Members Care for Aging Parents

Republished from: https://www.nytimes.com/2018/09/19/well/live/when-family-members-care-for-aging-parents.html

By Sandeep Jauhar

Sept. 19, 2018

My siblings and I joined the ranks of the 15 million or so unpaid and untrained family caregivers for older adults in the United States.

I hadn’t realized how quickly my father’s mind was fading until one morning a few years ago when he asked me why he was taking only six medications per day. “What will I take on the seventh day?” he wanted to know.

My mother, who had been given a diagnosis of Parkinson’s disease, had been in decline for some time and could be of limited help. Anti-Parkinson’s medications helped to relieve her muscle rigidity, but her condition had continued to worsen.

So we pressed my father to retire his professorship so that the two of them could move from Fargo, N.D., to Long Island to live closer to me and my brother. When my parents arrived, it was alarming how much their conditions had deteriorated.

My father was forgetful; my mother required assistance with walking. The friend who helped them move took me aside after they arrived. “They have to have hope,” she said.

“Hope for what?” I asked.

“That one day they will be able to do the things they can’t right now.”

We wanted our parents to live independently in their own home, which meant that my siblings and I were going to have to chip in to help. It was a small price to pay, we thought. When my sister visited from Minneapolis, she bathed and dressed my mother. I administered their medications and helped with groceries. My brother took care of household issues. Still, my parents’ home, like my parents themselves, was in a constant state of disrepair.

That summer, my siblings and I joined the ranks of the 15 million or so unpaid and untrained family caregivers for older adults in this country. A recent study found that almost half of this largely invisible work force spends, on average, nearly 30 hours a week providing care to relatives, many of whom have dementia, an estimated more than $400 billion worth of annual unpaid time.

The work takes its toll. These sons, daughters, husbands and wives are at increased risk of developing depression, as well as physical and financial difficulties, including loss of job productivity. Being sick and elderly in this country can be terrifying. Having a sick and elderly loved one is often a full-time job.

As the workload increased, we hired help, as much for ourselves as for our parents. But after some items were stolen, we realized we had to be more careful about whom we allowed into our parents’ home. Older adults in this country lose almost $3 billion a year to theft and financial fraud. Nearly every week my father instructed us to donate money to someone who had sent him a generic email appeal. It fell on us to keep our parents from being exploited.

With millions of elderly adults requiring assistance with daily living, physicians should make it routine practice to ask family members whether they can provide the requisite care. Many of these potential caregivers, ill or stressed themselves, simply cannot.

Insurers should also set aside funds to support these caregivers. Family members are often the people most invested in the care of their loved ones. Supporting them will only benefit our most vulnerable citizens. It won’t be cheap, of course. Because of the size of this unpaid family work force, even providing minimum wage to the most taxed caregivers could cost up to $100 billion annually.

In 2015, Andrew Cuomo, governor of New York, announced a $67.5 million grant to help ease the burden of informal caregivers of dementia patients in the state. The money pays for counseling, support groups and a 24-hour hotline. It also subsidizes the hiring of friends and neighbors at $15 an hour so that family members can enjoy occasional respite from the strain of caregiving. Several other states, including North Carolina, North Dakota, Minnesota and Vermont, have similar programs but on a much smaller scale. Much more needs to be done nationally.

Though our parents’ independent living required a steadily increasing commitment, there was no dearth of moments to remind us that it was worth it. I once called my father to tell him I was going to stop by the house later to talk about a change in one of her medications that her doctor had suggested.

When we ended the conversation, he forgot to hang up the phone. I heard him turn on the TV, which was playing a popular Hindi film song.

“Will you listen to some music with me?” he asked my mother. She did not reply. “Come on, hold my hand,” he said.

“No one has any use for me,” I heard my mother say.

“I do,” my father said. “The kids do. Here, hold my hand and dance with me.”

Sandeep Jauhar (@sjauhar), a cardiologist, is the author of “Intern,” “Doctored” and the newly released “Heart: A History.”

I Had Alzheimer’s. But I Wasn’t Ready to Retire.

https://www.nytimes.com/2018/09/07/opinion/early-onset-alzheimers-work.html

By Wendy Mitchell
Ms. Mitchell is the author of a memoir about dementia.
Sept. 7, 2018

“How long have you got?”

This is what my boss asked me when I informed him, in July 2014, that I had early-onset Alzheimer’s.

I had a file an inch thick with suggestions for how I would be able to keep my job as an administrator with the British National Health Service, one I had loved for more than 20 years. Whether out of panic or ignorance, my manager didn’t see it that way. A date for my early retirement was inked into his calendar; I would leave eight months later due to “ill health.”

I was 58 when I learned I had early-onset Alzheimer’s. For two years, I had been experiencing short-term memory loss. I sometimes had difficulty finding the simplest of words — I once forgot the word “and” in a meeting — and I’d been struggling to concentrate. While the diagnosis made sense to me, it was devastating.

Still, I hadn’t expected it would sound a death knell for my employment. I had new challenges, but I was still a capable employee who brought, I believed, a lot to the table. Besides, I worked for a health system that prided itself on understanding a patient’s needs. But here it was forgetting to extend the same compassion to an employee.

People are living and working longer than ever, and that means the incidence of people in the workplace with early-onset dementia will increase. In Britain, more than 40,000 people under the age of 65 have dementia. In the United States, there are an estimated 200,000 with early-onset Alzheimer’s.

Employers can’t just write them off. Loyal employees are a valuable resource. They’ve been trained (presumably at the expense of their employer) and have probably, in turn, trained others. They have a valuable understanding of their jobs. Employers need to realize that knowledge doesn’t just disappear overnight; this is a progressive, and often slow-moving, disease. I was still the same person I was the day before I received my diagnosis. I just needed to tackle my job — and my life — in a different way.

In the time I was given to stay on at work, I made adaptations. It turned out that my colleagues were much more understanding than management. They took the time to think and talk to me about what support I needed from them to keep going.

We got creative: They created a color-coded Post-it note system, with each color denoting a different team member, to help me remember whom to get back to on which project. They also knew to email me questions instead of popping their head into my office and expecting an immediate answer.

When I worked from home, the team would contact me only at prearranged times so I would know when I’d be interrupted. I’d set an alarm five minutes before that time, which alerted me to finish any task I was working on and prepare for the incoming call. When I was no longer able to recognize voices on the phone, email still served us well. Or they waited for me to be in the office; face to face and one at a time, I could manage things better.

I recently read about one woman’s happier experience with her employer, the British supermarket chain Sainsbury’s. As her dementia took hold, her managers worked with her, cutting her hours and duties where appropriate. They realized that she still had a contribution to make, even though it might have been a dwindling one. Her son praised the company on Twitter, writing that his mother’s “sense of self-worth and pride has undeniably helped with aspects of her Alzheimer’s.”

I no longer work for the National Health Service, but I still have time and energy to spare. I now work with several dementia charities and support organizations, and regularly speak about my experience with Alzheimer’s disease to audiences of doctors, nurses and caregivers. I try to communicate all that we patients still have to contribute to society. It feels good to have my opinions valued and my story heard. It has lifted my spirits, and I believe my packed schedule keeps the disease at bay.

I look back sometimes and wonder how things could have been different if my manager had really talked to me, if he had leaned across his desk and said, “Wendy, you have always been an asset to my department; now it’s my turn to help you.” How much longer might I have been able to keep working? What else might I have gone on to achieve?

Had I been given a chance, my response to “How much time have you got?” would have been, “I’ve got as much time as you will give me.”

Wendy Mitchell is the author of the memoir “Somebody I Used to Know.”