Essay: An ending in good hands

Martha’s Vineyard Hospital is a good place to die, I thought as my mother lay fading away in a hospital bed overlooking Vineyard Haven Harbor on a sunny afternoon as the Shenandoah made her way to sea.

A woman had just entered the room — to deliver a meal, or replenish the linen closet — I forget exactly why. But upon unexpectedly finding me sitting there, she reassured me that my mother was comforted by my presence. “Helen, your son is here,” she said to the frail woman who stared blankly out the window. Her familiarity, the kindness in the voice of someone who could have simply entered and left without a word, affected me more than the sight of my mother dying in a hospital bed.

Several days in the hospital brought my mother, 87, back from the brink, but the outcome of her medical trajectory was never in doubt. With the reassuring professional guidance of Dr. John Lamb, I said that the best course would be to let her return to Windemere, her home for the last four years of her life. We agreed there would be no more trips to the emergency room or hospital stays. The effort would be to keep her comfortable, and not use medical technology to prolong life in a body that was ready to give it up.

My mother had lived in her own house in Boston until it became too much for her to cope with ownership, and she moved into an elderly housing complex in the neighboring town of Dedham. The Vineyard chapter of her life began four years ago. On one of my periodic visits to her apartment, I discovered months of unpaid bills, undeposited checks and uncompleted paperwork. There was a fall that ended with a trip to the local emergency room and a nearby rehabilitation facility. I reluctantly realized that my mother, a very independent and private woman, could no longer live on her own.

It was also the start of my education in the bureaucracy of aging: well before we bury our elderly in dirt we bury them in paper. Medicare has endless forms and health care choices. There are supplement plans and prescription drug plans and variations of the same. It is a bewildering menu for those who must cope on their own.

One insurance form I tried to complete for my mother said, “Do not populate below this line.”

“What does ‘populate’ mean,” I asked the helpful woman on the other end of the toll-free telephone line. “Oh, that means write,” she said.

“Well,” I said, “why not use ‘write;’ it is a perfectly good word.” Of course, I did not expect the insurance bureaucracy to undertake a rewrite on my behalf. It was frustrating, and there would be more of it.

My mother did not have a lawyer or accountant on the payroll. There was no trust protecting the money she had managed to save over a lifetime of hard work. The cost of a shared room and board in Windemere is approximately $7,000 a month. It is a lot of money, but writing checks month after month has a way of making the figures not seem real. I suppose it is a defense mechanism.

The calculus is this. Unless you are wealthy and have prepared in advance, or you are poor and you are already receiving state assistance, you deplete all your assets until you only have $2,000 left to your name. At that point, the taxpayers take over the cost of nursing home care.

The more you have, the more you pay out. The less you have, the less you pay out. If you have nothing, you don’t worry about it. If you are a middle class hero, you are pretty much on your own, and you worry plenty.

Your first worry is that the nursing home accepts Medicaid and will have a room available. Many only accept private pay. Your second worry is how in the world you will ever be able to complete the Medicaid application.

I hired a lawyer at a cost of several thousand dollars who specializes in Medicaid applications. I was advised to consolidate what was left of my mother’s bank accounts, and purchase an annuity that would pay out a set amount each month.

My mother’s combined monthly income, including a social security check for $1,354, was approximately $3,500. And each month for almost four years, I wrote a check for about $3,500, and Medicaid paid the balance.

On Friday, I called the Social Security office to report that my mother had died on July 25. The woman told me that my mother’s monthly July social security check would be debited. Because my mother had died before the end of the month she would not receive that month’s check. I told the woman that my mother’s nursing home bill was based on that payment.

“That just seems so unfair.” I said. The woman said nothing. There was a pause.

“On behalf of Social Security I do wish to extend our condolences on your loss,” she said.

Over the course of four years, my habit was to visit Windemere each week and take my mother to lunch in the hospital cafeteria, then push her wheelchair through the hospital corridors. The new hospital provided a nice addition to our route.

My mother always looked forward to the second floor and the window that provided a view of the nursery. She particularly liked the sign in the window, “beach babies.” Most afternoons it was empty, but one day we hit it just right. A newborn was being swaddled in a blanket as the proud dad looked on. The nurse saw my mother in the window and brought the newborn over to give her a better look. My mother beamed. She was happy to tell anyone who would listen that she had once given birth to twins.

Each week, we would encounter people she had met in one capacity or another. “Hi Helen,” was a familiar greeting. The intimacy of the day-to-day caregivers, from cafeteria workers to nurses, the genuine warmth of the greetings reflected the ties that bind our community and elevate the experience of being in the hospital or Windemere.

After my mother returned to Windemere, I stopped in, if only briefly, as often as I could to reassure her that I was near. She did not speak, she only stared straight ahead. One night, she lay trembling. The night nurse, a young woman named Anna, came in and began stroking my mother’s forehead and speaking to her soothingly. Anna’s was one of so many of the small interactions I had witnessed over the past four years between patients and staff at all levels.

Anna left the room and returned with some medicine to make my mother more comfortable. My mother spent her last week of life in a shared room looked over by loving and caring people.

Nelson Sigelman is The Martha’s Vineyard Times managing editor.