Originally published by The Forecaster, Apr. 04, 2012

World-renowned art critic Hilton Kramer walks a path while living at the Vicarage by the Sea, a residential home in Harpswell that takes an unusual approach to caring for people with Alzheimer's disease and other forms of dementia. Kramer died March 27 at 84.

HARPSWELL — Hilton Kramer, considered by many one of the most incisive art critics in the world, spent his final months at The Vicarage by the Sea, a residential home that provides care to those with advanced dementia.

Kramer’s wife, Esta, speaking just days after he died at age 84 on March 27 of a rare blood disorder, praised the Vicarage.

“I just think it’s the most extraordinary place,” she said.

The story of how the Vicarage took an aging art critic and provided him with a measure of peace is also extraordinary.

“The essence of who individuals are is not altered by Alzheimer’s,” said Johanna Wigg, who founded the Vicarage after caring for her grandmother.

Wigg said the mainstream medical establishment places too much focus on minimizing behavioral differences caused by dementia, and reducing costs in institutional environments.

That approach, she said, is a recipe for disaster, leading to patients trapped behind locked doors and medicated into stupor.

By contrast, the Vicarage, set in the rugged, windswept beauty of Harpswell’s rocky coastline, has an approach to care so different from the norm, that an intellectual outsider like Kramer could hardly have failed to appreciate it.

At the Vicarage, a residential home that accommodates just eight people at a time, behaviors are embraced.

“If someone wants to go for a walk, we let them go for a walk,” Wigg said. “We go with them.”

And if someone develops a desire to kiss the hands of all those he encounters, as Kramer did, the Vicarage doesn’t try to quash that desire with medication.

Struggling to cope

Before Kramer moved into the Vicarage last June from their home in Damariscotta, his widow said, his disease had advanced to the point where he rarely spoke.

The man who founded the intellectual magazine New Criterion, and who had served as the chief art critic of The New York Times, had lost all interest in his field.

“It’s very strange, Alzheimer’s,” Esta Kramer said. “He didn’t connect with art at all.”

Institutional options, she said, didn’t seem in keeping with the individuality that Kramer advocated throughout his life.

While under the care of other facilities, Kramer had been heavily medicated. He rarely interacted with anyone, hardly slept, gained more than 30 pounds, and had reduced mobility.

An artistic approach

When Esta Kramer saw The Vicarage by the Sea in a phone directory, she planned a visit.

“I instantly fell in love with the place,” she said.

One of the things that appealed to her was the artwork that the Vicarage had on display. In fact, Wigg’s grandmother, Peterson, was herself an artist.

The shelves of the Vicarage are full of Peterson’s sculptures; as her Alzheimer’s progressed, her sculptures became distorted and have become a physical testament to the difference in perception that a person with Alzheimer’s can experience.

Under the care of Wigg and her staff, Kramer began to recapture some of the joy of his younger years.

“Johanna really pared down the drugs,” Esta Kramer said. “At the end, he was taking very few.”

With a balanced diet and the ability to take a walk outdoors, Kramer stopped putting on weight, she said. The exercise allowed him to sleep better, which meant that he was happier and less anxious.

Wigg said that he spent a lot of time outside, watching the ocean. At least some of the art that Kramer loved was inspired by just this sort of natural beauty.

In fact, the work of Emily Nelligan, which he championed, consisted of charcoal drawings of Great Cranberry Island, just up the coast from the Vicarage.

Esta Kramer said she will make a donation in Kramer’s name to provide for a stone bench on a walkway that will extend from the Vicarage to the ocean’s edge.

It will allow others to enjoy a view that at times, it seemed, only Kramer could describe.

“He could really comment on the beauty of things,” said Cheryl Golek, a dementia care specialist at the Vicarage.

A happier life

Staff members said that they will always remember the times when Hilton Kramer enlivened the Vicarage by the Sea with his wit and intellect.

“It was an honor to take care of him,” Eric Gillett said. “He was such a wonderful man.”

Even when Kramer was nonverbal, Esta Kramer said she could see indicators of his passion for learning.

“I think he was much more of a presence than some of the other residents,” she said. “He would be hanging out in the kitchen, watching them do things. The others would mostly be in chairs, watching television. He never, never watched television.”

“His affect all came back,” Wigg said. “Once he had a copy of one of his books, and he gave a seminar to (a staff member) on one of the chapters. His linguistic ability was just amazing.”

Kramer was fond of critiquing a book containing the work of Leonardo DaVinci.

He developed a particular rapport with Albert, another resident at the Vicarage, who shared Kramer’s New York roots. The two would sit on a couch at the Vicarage and chat, passing the time together.

Most of the world knows only that a a great intellectual has died. But for Esta Kramer, and the Vicarage staff, and residents like Albert, the void is more personal.

“It’s a very great loss,” Albert said. “I miss him terribly.”

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I’ve recently had first hand experience with my very elderly grandfather who came to live with my son & I & without going into a long winded story, he lived with us for 6 months & it was very, very difficult & I was able to (for the first time in my life) understand why Nursing Homes exist, but still don’t agree with them for the most part. He is now in Mississippi where he went for a visit in Sept. & my Aunt who lives there & is the director of nurses in a small private nursing home, decided to place him instead of letting him come back with us.

Initially I was relieved to not have the responsibility & a break, but soon after I knew it was the wrong choice, but I’ve been the single voice who wants him back. It breaks my heart to have him so far away from me especially since he’s been in my life for my entire life. He’s now 99 years old & has many struggles but I still believe the best place for him is with his family. My Aunt is technically his daughter but she’s very detached from him since she’s lived away for over 50 years & she really doesn’t know him very well. She also has a son who’s married & they have two children 12 & 10 (my grandfather’s great grandchildren) but they don’t bother with him much either, it’s just so sad. This year was the first year that I didn’t spend Thanksgiving with him but took comfort with the fact that he would be with his family only to find out that they didn’t include him in their Thanksgiving plans nor did they change their plans & spend it with him, SO SAD!

Sorry, I didn’t mean to unload on you, that’s not what this email was supposed to be about. Again, what you’re doing is wonderful & I would love for my grandfather to be part of this experience but his health is so compromised that I don’t think he’ll ever be able to come back & be with us, again, so sad! Thanks for treating your residents like human beings because they deserve it! I keep telling everyone that will listen to me about my grandfather, all he did WRONG was get old, he didn’t do anything to deserve the way he’s being treated, he just got OLD & we’ll all be old one day, it’s not something you have control over!

Maybe I’ll visit your wonderful sanctuary someday, keep up the great work!

Merry Christmas

This important book simply but persuasively demonstrates why we should provide the opportunities for people with dementia to experience the great outdoors. It also gives a voice to people with dementia who have felt the benefit of getting closer to nature. The contributors explore many different ways in which people with dementia can experience and interact with nature through pursuits such as farming, gardening and walking, and the book includes a chapter on the therapeutic, life-enhancing effects of activities with animals. The book includes descriptions of projects and initiatives from around the world that have revolutionized the everyday experience of people with dementia, and made a real difference to their quality of life. Illustrated with photographs amply demonstrating the power of nature to lift the spirits and enrich life, the book will be an inspiring guide for relatives, carers and professionals who want to help people with dementia lead a richer life, experience nature fully and enjoy its many accompanying benefits.

Purchase in Print or Electronically

This important book simply but persuasively demonstrates why we should provide the opportunities for people with dementia to experience the great outdoors. It also gives a voice to people with dementia who have felt the benefit of getting closer to nature. The contributors explore many different ways in which people with dementia can experience and interact with nature through pursuits such as farming, gardening and walking, and the book includes a chapter on the therapeutic, life-enhancing effects of activities with animals. The book includes descriptions of projects and initiatives from around the world that have revolutionized the everyday experience of people with dementia, and made a real difference to their quality of life. Illustrated with photographs amply demonstrating the power of nature to lift the spirits and enrich life, the book will be an inspiring guide for relatives, carers and professionals who want to help people with dementia lead a richer life, experience nature fully and enjoy its many accompanying benefits.

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This is what I saw on Christmas Day while sitting on the couch with my husband at the Vicarage by the Sea, the Alzheimer’s care facility where he now resides.

Earlier, Henry and I had exchanged simple gifts. I gave him a homemade sock monkey that said “Kisses For You” on its hat; I’d read stuffed toys are a good idea for someone who is approaching the advanced stages of dementia. He gave me a handmade red and brown felt bird that I saw in a store window in downtown Brunswick. Of course, I had picked it out and wrapped it, but it was something I really wanted.

We also enjoyed the ham dinner that had been prepared for the eight residents — three who are independently ambulatory, the rest in wheelchairs or using walkers with assistance — and whatever family members happened to be there. As it turned out, I was the only additional diner, although visitors came and went all afternoon.

The parlor couch on which we sat is across from the piano in a large living room. Another resident’s d

aughter had come to play Christmas carols, something I knew Henry would enjoy. Her father went off to the bathroom for a few minutes, and when he came out he wouldn’t settle down in the chair she had pulled next to the piano bench. Pretty much nonverbal, he was trying to figure something out. Finally, he saw her coat and put it on. “Dad, what are you doing in my coat? It looks funny on you!” she said.

“Maybe he’s cold,” I offered. “Yes, you usually have a sweater on,” said Dale, one of two staff people on duty. He quickly found one for him to wear and that settled him down and the music began.

Henry and I attempted to sing along — “Angels we have heard on high.” She urged, “Sing, Dad. You know this one!” Trying very hard to bring some holiday cheer, she was playing too quickly for her “choir.” Just as I was getting ready to suggest she slow down for us, something caught my attention.

It is routine for the staff to bring a resident or two to the bathroom after a meal, so there was nothing unusual about Dale and Millie guiding Mary across the parlor in her wheelchair. Profoundly impacted by the disease, she was no longer joining the others at the dining room table. Instead, someone would feed her in her recliner. No one goes to bed during the day; that is reserved for night-time sleep and wisely so. There are comfortable chairs in which to doze or nap. So when Mary was wheeled into a bedroom off a hallway adjacent to the parlor, I took note.

As “Hark, the herald angels sing!” rang out, I watched Dale and Millie spread two waterproof pads over the sheets on the bed. Then as one held up the comforter, the other placed Mary in the bed and tucked the covers under her chin. I could see Mary’s face and it became clear to me that she had passed away sometime during Christmas dinner. Tears stung my eyes, but Henry sat unaware and the music continued.

One of the more active residents had followed the staff into Mary’s bedroom, so he was gently guided toward the parlor. As he came aside the piano, the man sitting by his daughter jumped up to confront the seeming interloper. Gently, Millie placed her arm between the two men, the daughter redirected her father to his chair and calm was restored.

Soon Eric arrived to begin his shift at the residence. Millie called to him with not a flicker of distress in her voice, “When you get settled, we could use your help in here.”

Dale took Eric out of my view, no doubt to explain the situation. Then Eric went to Mary’s bedside. He knelt down and cupped her face in his hands for a few moments, then placed a hand over her heart. Finally, Millie, Dale and Eric –glassy-eyed but composed — left the bedroom and closed the door behind them. There was some telephoning back and forth in the kitchen. I heard the name of a funeral home mentioned.

Dale’s shift was ending. He donned his coat, braved a smiled and said to the residents and visitors, “Merry Christmas, everybody,” as he headed out the door and home. Eric and Millie continued with their appointed tasks, tending for those in their care.

I made a trip to the bathroom. When I returned, the pianist had ended her concert and learned of Mary’s death. She was in tears. Up to that point, the event had been handled so well that I was the only other visitor or resident who knew what was transpiring that Christmas afternoon. Henry was waiting for me on the couch, all smiles, still unaware.

Before too long, two well-dressed men wheeled a gurney into Mary’s room and closed the door behind them. They had come in through a back door and covered the gurney in a pretty quilt to soften appearances for any observers. In a while, the bedroom door opened and Mary’s stay at the facility drew to a close. “Sleep in heavenly peace,” I thought.

I told Eric how beautifully the staff had handled Mary’s passing. “I’ve done this many times,” he said. “But it’s good to hear you say that.”

I complimented Millie as well. “The hard part is not crying,” she said, as she turned her attention to the needs before her.

Thank you so much for taking the time to answer this letter. Bless you for what you do.

My husband and I live just outside of Fredericton, New Brunswick, Canada and are planning a sight seeing trip to Maine in September, while looking up Cooks Lobster House on Bailey Island I ended up looking at the walking trails in Harpswell and from there ended up at your site. You have touched my heart to know that there is such a home as yours for those who need a warm caring helping hand. Never have I heard or read of any type of home for those with memory loss, where all the residents have the same debilitating health problem. The children and animals must add a tremendous amount of normalacy to those in your care. My mom would have felt very much at home because she never saw either a child or a dog that did not need to have her loving hand on their head and a sweet word spoken to them. It is out of character for me to e-mail like this but having the sweetest mom on earth who required the type of care you provide just made me want to
reach out and say “Bravo”. Not only are you helping the residents but you are also removing a tremendous stress from the families, what a wonderful gift. I am in admiration of you and what you do. Have a great day!

Dementia is a term that is used to describe a collection of symptoms including memory loss, problems with reasoning and communication skills, and a reduction in a person’s abilities and skills in carrying out daily activities such as washing, dressing and cooking.

The most common types of dementia are: Alzheimer’s disease, Vascular dementia, Fronto-temporal dementia and Dementia with Lewy bodies.
Dementia is a progressive condition, which means the symptoms will gradually get worse. This progression will vary from person to person and each will experience dementia in a different way – people may often have some of the same general symptoms, but the degree to which they affect an individual will vary.

Learn more about dementia

Before this time I was tense, nervous and honestly running out of gas.  I am sure Madeleine must have sensed this though she never mentioned it. 

Now she is in a situation where her needs for assistance in getting up from a chair or moving from one place to another are being met by a professional staff.

I was favorably impressed by my first visit to the Vicarage and I continue to find nothing but good things to say about this home and the high quality of the people who operate and maintain this facility.