AGING AND CARING

"Our family has a severe case of stubbornness, stoicism and privacy that interferes with accepting and asking for help — and even knowing when help is needed,” writes Linda Davis Cirino ’62. Cirino is the author of On Your Own Terms: The Seniors’ Guide to an Independent Life, a sourcebook of strategies, tips, products, and services which she began researching as she witnessed her parents handle the challenges of remaining self-sufficient at home.

Another alumna writes that she and her spouse “seem to be making mental notes of the characteristics that are really frustrating in our elderly parents with the goal of striving not to repeat these mistakes in our relationships with our own children as we become older and dependent.” (The writer’s 78-year-old mother had always relished her independence but is developing early symptoms of dementia, while her 88-year-old mother-in-law is in good health but seems “unable to appreciate it.”)

The volume and passion of comments on bmcalum-l, the Association’s e-mail discussion group, prompted our request last year for submissions on aging parents. Whether adult children or aging parents themselves, it is clear that many alumnae/i are struggling to help family members and cope with change.

In these articles, we present the complex situations of individual families rather than answers to questions, although we direct you to a sampling of publications and resources below.

Long distance caregiving

By Lynn Litterine ’96

Nancy Kays, M.S.S. ’90, works as an outpatient therapist at the Behavioral Health Center for Older Adults in Langhorne, PA, but her understanding of the problems of long distance caregiving for the elderly comes from a personal point of view as well. Nancy’s mother in North Carolina was already caring for her husband, who suffered from dementia, when she had a heart attack in 1986. Nancy lives in New Jersey, she has a sister in California and a brother in the Air Force who was stationed in Florida at that time.

“My parents had moved to North Carolina when they were sick of the snow in New York State,” Nancy says. “We were all younger then and didn’t look down the road at what might be ahead. We told them, ‘Do your own thing; it’s fine’ And for 16 years, it was great for them. Then my Dad developed some kind of dementia, but he could stay at home; the care he needed during the last three years of his life limited my mother’s life. We were conscious of what my mother had to deal with but we were not in a position to help much with him because we were not nearby.”

All three children quickly assembled in North Carolina when Nancy’s mother had the heart attack. The initial crisis clearly required their presence, but as her mother stabilized, and the days dragged on without a decision by her doctors, staying away from full-time jobs became harder to justify.

“One of the problems of a long-distance relationship is figuring out when it really is a crisis,” Nancy says. “It was hard to decide what to do. Once things seemed stable, with my vacation days ticking away, I went home. Then, within 24 hours, the doctors called and wanted to fly her by helicopter to Duke University for bypass surgery.”

Nancy went back to North Carolina until her mother was safely through the surgery, then returned home again. When her mother was discharged from Duke, she and her sister flew back down.

“She was kind of depressed after surgery; she wasn’t eating well and was scared to move. So my sister and I got her up and rolling again. A year of commuting followed.”

It became clear that Nancy and her siblings would need to be involved in her parents’ care on an ongoing basis. These are the issues she says need to be resolved once it’s clear that a person will need consistent help from long-distance family members:

• Who’s going to be in charge? Usually this will be the elderly person herself, until it’s very clear that she cannot handle it; afterward, it often devolves onto one child. This can be a source of guilt and resentment; those feelings need to acknowledged openly and talked about together. Siblings should discuss their expectations of each other. What have their roles been? What would they like them to be? What does the older person want? Often parents and kids assume they know what each other wants and they don’t,” Nancy says. “It has to be talked about.”

• Get organized. Write down tasks to be done and approach them as a team by capitalizing on people’s special strengths. Get a telephone book for the area in which the elderly person lives and make preliminary calls to their community resources before returning home. Bring that directory back home for future use.

• Get communication going with the elderly person’s doctor and know as many people in their community as possible.

• Decide how to handle the holidays in advance. This is a hard time for elderly people, especially if they have been widowed. • Talk about money, if the older person will discuss it. If they are reluctant, at least share information among the siblings.

• Establish channels for making legal and health care decisions. This may involve a durable power of attorney, a regular power of attorney, and/or a living will. Become familiar with the laws that govern these powers in the state where the person lives. Also analyze the extent of family resources in the event of a nursing home placement. If those resources are considerable, hire an attorney in the state where the elderly person lives and do some estate planning.

When Nancy’s mother felt she could no longer live on her own, she put her house up for sale. It sold in just three days, which precipitated a frantic housecleaning by the family. They decided together that she would be best cared for in her own community.

“She had longtime friendships there, her church, no problems with winter weather,” Nancy says. “Should an older person stay near children or friends? Often their friends have more time for them than their working children do. But we left it open and kicked it around a lot in the time that followed. It’s important to talk to your parents about where they expect to live.’

The retirement village worked well for Nancy’s mother, but eventually, escalating fees prompted the family to call in a financial planner to ensure she would have a steady fixed income. Then just five months later, at the age of 85, her mother died.

“Even in the retirement villages, there are too many questions right up to the very end,” Nancy says. “And the prices! I’m amazed at the number of people who can afford these homes here in Bucks County where I work. Where are they coming from? This is a working-class and middle-class community.”

Nancy and her husband do not have children, and she has given a lot of thought to what this will mean as she ages.

“I think I’ve preplanned more because of that,” she says. “I think about different scenarios and how I’d want to handle them. I’ll need to identify someone with power of attorney and communicate that up front. It’s less complicated financially, but we’ll have only ourselves to rely on. I think about my friendships and develop them mindfully; I want relationships with people of different ages. I also talk to myself a lot about the need for flexibility; I try to develop varied supports in my life.

“There are people in private practice who can help families, especially with problems of long-distance caregiving. They should at least contact Children of Aging Parents, a national organization that was founded in Pennsylvania (1609 Woodbourne Rd, #302A, Levittown, PA 19057, 1-800-227-7294). They sponsor support groups, help families locate services, any number of things.”

The good news, Nancy says, is “There’s no reason to feel as alone as some people do, if you’re willing to reach out.”

Further reading

• Vivian E. Greenberg, M.S.S. ’77, Children of a Certain Age, Your Best is Good Enough, Should Mom Live with Us?

• A series of articles by Marcia Ringel ’68 on parenting your parents, aging in other cultures, last wills and testaments, and continuing life care communities is available online from Swarthmore Magazine (November 1996) at: www.swarthmore.edu/bulletin/archive/96/nov96/feature.html.

• Professor of Social Work and Social Research, Lenard Kaye, Controversial Issues in Aging; Self-Help Support Groups for Older Women: Rebuilding Elder Networks through Personal Empowerment; Elderly Men: Special Problems and Challenges; and New Developments in Home Care Services for the Elderly: Innovations in Policy, Program and Practice.

• Ursula Adler Falk, M.S.S. ’52, and Gerhard Falk, Ageism, The Aged and Aging in America: On Being Old in an Alienated Society.

Long Distance Caregiving -- Nancy Kays, M.S.S. '90
By Lynn Litterine '96
"I feel more like 17..."
By Betty Kindleberger Stone '33
"Lord, I miss him terribly"
By Joanna Rom '74
Intergenerational Care
Susan Schacher McFeeters '73
Independence: How Much? How Long?
By Anne Mazick Levin '55

‘I feel more like 17’

By Betty Kindleberger Stone ’33

I feel more like 17, but I am 85 1/2, the aged parent of four loving, busy children in four distant states, children I hope will stay loving by my being as little nuisance to them as possible.

To reduce my nuisance to the earth also, I have tried to limit my travel, pets and housing. I do, though, like having more than one room, so that when one space becomes fouled with work, escape to another is possible.

Soon I expect to move to a Quaker retirement place, one chosen because from it I can walk to an open stacks college library, college swimming pool, and to a Quaker meeting. One chosen, also, because in its possibly ultimate nursing wing, the patients look bright-eyed, not as if they were doped, as in so many such places.

Because bit by bit I see my memory disappearing, I have asked the child who is my successor trustee and executor to record the final names and numbers of my life. I have also been gradually unloading property I don’t need, but keeping a few beautiful objects. Finally, I have arranged for a medical school to get my body, and then, at last, to have my ashes cremated and thrown into the sea. No need for a memorial service.

With all these necessary details seen to, despite a certain bodily unsteadiness and a right knee that seems to lock up on me, I am looking forward to, indeed I expect — or anyway hope for a decade or more of interest, possibly a little usefulness, and, if all goes well — a reasonable amount of plain, good fun.

Long Distance Caregiving -- Nancy Kays, M.S.S. '90
By Lynn Litterine '96
"I feel more like 17..."
By Betty Kindleberger Stone '33
"Lord, I miss him terribly"
By Joanna Rom '74
Intergenerational Care
Susan Schacher McFeeters '73
Independence: How Much? How Long?
By Anne Mazick Levin '55

‘Lord, I miss him terribly’

By Joanna Rom ’74

“What was Grandpa like when he could talk?” My 7-year-old (already committed to the BMC class of 2011) asks tough questions. Grandpa, my Dad, has Pick’s Disease, an exotic cousin of Alzheimer’s. Is there any comfort in the fact that he has a rarer disease? Little. A senior civil servant, CPA, loving husband, dad extraordinaire, his illness has broken our hearts. He is now in a nursing home, literally speechless. His one eye (the other lost to unsuccessful retina surgery which may have been hampered by his inability to communicate) still peers out — seeing, responding, reacting. But it's like the eye of a beloved pet — a yearning eye, hiding all sorts of mind mysteries.

Does he understand what we say? Does he understand what he sees? Does he know where he is — and why?

Yet as awful as today is, the insidious nightmare crept up on us slowly. My mother bore the brunt of it — the nest was empty and they were putting the finishing touches on their retirement plans. And when did it start? A confused appointment? Overlooked shopping list? A lost noun? An off-beat emotional reaction? A forgotten face? Little hints, little obscurities...

Work, once easy and instinctive, became challenging. The clues became more frequent. Something wasn’t right but medicine danced around the issue with irksome vagueness. For almost 10 years, a brilliant, witty man became less smart, less sharp, but no one could pinpoint why. It couldn’t be Alzheimer’s.

He wasn’t confused. He didn’t get lost. He could drive, play bridge, deal with most mundanities. But his judgment started to falter. He couldn’t retrieve certain memories — and knew that he couldn't. He still had his wonderful curiosity about the world, but instead of being dazzled by the next generation of computers or the latest space mission, he’d be bemused by frozen orange juice or a bicycle horn. A confirmed “bookaholic” could barely read. After exhaustive diagnostics, Pick’s was identified. Histologically there are differences between “Pick bodies” vs. plaques and tangles. Who cares? What difference does it make?

More importantly, my mother’s heroics were great, her denial fierce, her acceptance slow and gradual. She grew with each step she had to take — becoming the family driver, enrolling him in adult day care, dealing with a thousand awkward moments — she got through them with increasing grace, monumental patience. Our family humor got darker, droller — we know Daddy would have laughed along with us if he could.

Lord, I miss him terribly. The fragile shell of the man that is left has the same sweet, familiar face, the same pheromones. He still likes to be hugged and petted. But where did all our memories go? The good advice? The wonderfully satiric, Seinfeldian letters to summer camp and college? The unconditional love? That’s probably all that is left.

Joanna Rom wrote this essay last year. Her father, Julius Rom, died on January 12, 1998.

Long Distance Caregiving -- Nancy Kays, M.S.S. '90
By Lynn Litterine '96
"I feel more like 17..."
By Betty Kindleberger Stone '33
"Lord, I miss him terribly"
By Joanna Rom '74
Intergenerational Care
Susan Schacher McFeeters '73
Independence: How Much? How Long?
By Anne Mazick Levin '55

Intergenerational care

The older residents of the Fellowship Community, located in Spring Valley, NY about 30 minutes north of New York City, live amidst a vibrant and culturally rich intergenerational community of about 65 senior citizens and 75 younger adults and children.

The Fellowship’s senior population includes 33 who live in Hill Top House, a state licensed adult home, and 32 who live more independently in other buildings. As they are able or wish, they participate in the life of the community by helping care for its eight acres of biodynamic gardens, and by helping in several cottage industries, which include a weavery, candleshop, pottery, wood/metal shop, and printshop. These activities supply half of the community’s income, which enables it to charge fees that are substantially lower than other local adult homes.

The spiritual basis of the community comes from the Anthroposophy of Rudolf Steiner. A central idea at Spring Valley is that a person’s physical, emotional and spiritual well-being depends on the dynamic exchange among age groups, and that those in mid-life can nourish and be nourished by old and young alike. Support staff, called “co-workers,” live in the community with their families and share the tasks of caring for the elderly, maintaining gardens and facilities, and administrating; there is no hierarchy of management. About 40 people who live outside the community also enjoy volunteering for various periods of time.

Susan Schacher McFeeters ’73 and her husband David have lived and worked at the Fellowship for more than 13 years. David’s father lived at Hill Top House for five years until his death, and now his mother is a “member” in an independent apartment.

Susan and David began to volunteer at the Fellowship while they were both living in a small Gurdjieffian community on Long Island. Both had been seeking a community where they could live their ideals of working towards a new society. “We were only friends at that point,” Susan says, “but soon realized our connection with one another and with the Fellowship, and knew that when Mrs. Popoff, our Gurdjieff teacher, no longer needed us, we would move here. When she died, that’s what we did.”

“My upbringing was in Reform Judaism, but I couldn’t find the spiritual content I was seeking,” Susan says. “I yearned for a community of like-minded people, serving the same ideals. Bryn Mawr gave me my first taste of community life, for which I was grateful.”

“David was also looking for a way to care for the ill in a social context. His father, a World War II veteran, had been shell shocked and developed paranoid schizophrenia as a result. When David was 6, his father was institutionalized; the family was no longer able to care for him. After 20 years in VA hospitals and group homes, he could finally live independently, but was not well, so we arranged to move him to Hill Top. Here there was a chance for a new life for him.

“It was a very healing experience for this man to be in a social context again. People really liked him — there was a dignity about him. He had been such a brave soldier during the war. He had a single room in Hilltop House, and I was forever wheeling my baby carriages in and out. We kept toys in his closet, and the other children in the community called him ‘Grampa Floyd.’ Since he was not a well man when his own children were growing, I think he thrived on having all the children around him at this point in his life.

“A special law passed 12 years ago enables us to keep people here who would otherwise have to be transferred to a nursing home because of increased care needs. So when my father-in-law developed a terminal illness, we were able to care for him; he died quietly in his room some weeks later. We are able to experience death here in a way that most people nowadays do not. It is not uncommon for an older person to die here, and we do all we can to make them comfortable as they near their life’s end. The children are able to experience this also; they are not afraid, and express a real reverence as they witness their older friends after death. This is something that gives great meaning to our lives here — you realize how close, and how beautiful, that threshold is between life and death.”

David’s mother came to the Fellowship two years ago. “She is a real farm woman who loves to work and clean,” Susan said, “but nobody would hire a 75-year-old woman, even if she could do the job better than anyone else, so we brought her here. She’s happy now — she babysits for us, has many friends, and works in the laundry room and kitchen to her heart’s content. Everyone appreciates what she is able to bring.” Susan’s own mother still works and lives nearby. “She visits every two weeks or so, spending time with the children and helping out in different ways. We’ve tried to bring her into our life here.”

Susan notes that while not everyone can care for an elderly parent in a community like Spring Valley, certain of its principles can be applied to other living situations. “It’s important to bring a rhythm to their lives, not only in terms of regular meals, rest and social activities,” she says, “but also in the sense that they feel needed by life — they can help in meal preparations, table setting, baby-sitting, gardening. This is what is missing in many nursing home situations. We go out of our way to make it possible for the members to participate in our work — we even bought an attachment for the tractor so that an older person can sit on the back and lean over to plant vegetable transplants in the fields.”

The Fellowship Community does not actively recruit for members or co-workers, and there is a long waiting list. “We don’t require members to be interested in Anthroposophy, but we do ask that people are at least open to it, and we look for members who want to be part of the community life,” Susan says.” This isn’t really a place to ‘retire’ — it’s too full of life for that!”

For more information, call or write the Rudolf Steiner Fellowship Foundation, 241 Hungry Hollow Road, Spring Valley, NY 10977 TEL 914-356-8494.

Long Distance Caregiving -- Nancy Kays, M.S.S. '90
By Lynn Litterine '96
"I feel more like 17..."
By Betty Kindleberger Stone '33
"Lord, I miss him terribly"
By Joanna Rom '74
Intergenerational Care
Susan Schacher McFeeters '73
Independence: How Much? How Long?
By Anne Mazick Levin '55

‘Independence: How much? How long?’

By Anne Mazick Levin ’55

“Pull over at the corner, and I’ll go in for my prescription while you drive around the block.”

“Wait until I park, Mom, and I’ll get it for you.”

“Don’t worry, I can do it myself.”

I hesitate between pulling nearer to the curb and letting her out or making a right turn to look for a parking space, between what I perceive as risk or safety, between her will and mine. This time I accede to her wishes and pull over to stop.

I watch her open the car door, one hand clutching the handle, the other reaching out to the street with her cane. She steadies the cane, hoists herself to the street and pushes the door shut while I watch. If she slips or trips and falls now, I can’t reach her. I notice the hand gesture, not an upward wave goodbye, but a downward one, reaching in back of her body. “Go on your way. I’m OK.”

The collar of her gray down coat puffs up over the back of her neck, almost meeting her gray-and-red knitted hat. Looking down over her bifocals, concentrating on her footing, she steps up on the curb, lodges the cane, then lifts the other foot. The curve of concentration and the smooth softness of her coat hide the bend in her back and the foreshortening of her upper body. She was only a fraction of an inch shorter than I am, but lately I have to lean over to kiss her cheek.

Relieved that she has passed the most difficult hurdle, I turn the corner, assuming she’ll manage the few more steps to the drugstore. I’ll park and meet her.

I remember when she scolded her mother for washing the kitchen floor on her hands and knees.

“What if you can’t get up?”

“I’ll crawl over to the table and pull myself up,” my grandmother grinned.

My mother was older than I am now when they had that argument. But my grandmother was stronger and healthier at 90 than my mother was at 80. She had no major surgery, no broken bones. My mother, on the other hand, had already been battered by kidney cancer and bone fractures from falls.

Two spunky women who had managed their lives and worked inside and outside of home dealt differently with issues of independence.

At 90, when Grandma feared she might not be able to continue washing her floor, or go out in winter to buy groceries for herself, she applied to a nursing home and entered two years later. She preferred to surrender the responsibility of cleaning, shopping and cooking rather than accept help from a stranger or continue depending on her aging daughter.

My mother was determined to stay home, no matter how fragile she became. She loved to invite her grandchildren for dinner and preferred to let them help with preparation and clean-up than give up the pleasure of dining with them in her own apartment. She enjoyed having neighbors drop in for tea and a chat, and on good days she liked to walk down the street to choose her fruit at the market and do her own banking.

The solutions had to be different from Grandma’s as long as that was possible. We visited assisted-living facilities rather than nursing homes, and I agreed with my mother’s assessment. They are often isolated, far from familiar landmarks or friends. Breaking new ground over 80, with failing eyesight and hearing, is daunting.

We added more support at home, and even that meant limited warfare.

“If you want to stay alone, you have to have a telephone response system for my peace of mind if not yours, and you shouldn’t go out alone,” I insisted. “We’ll find a helper for a few days a week.”

“Three afternoons,” she replied. “And I refuse to have anyone stay overnight.”

Many agencies, such as the Visiting Nurse Association, provide homemaking care, nursing supervision, physical and occupational therapy. The Ride, part of the Metropolitan Boston Transit Authority, offers transportation with a doctor’s recommendation. Finding the appropriate services and compatible people within the organizations takes time, but that was our best choice.

While older relatives told me, “She shouldn’t be alone,” aggravating my worst fears, a cousin between my mother’s age and mine offered the most helpful comment.

“She’s an intelligent person who knows how she wants to live. You have to let her make her own choice. She may have an accident and get hurt, and if it happens, you mustn’t feel guilty about it.”The observation did not ease my concerns, but it confirmed my convictions. I had heard my mother speak the same way about her own mother, and now it was my turn. I worried about her safety, but I had to allow an intelligent woman her own choice.

Copyright Anne Mazick Levin. First published in The Boston Globe 9/24/95. Reprinted by permission of the author.

Long Distance Caregiving -- Nancy Kays, M.S.S. '90
By Lynn Litterine '96
"I feel more like 17..."
By Betty Kindleberger Stone '33
"Lord, I miss him terribly"
By Joanna Rom '74
Intergenerational Care
Susan Schacher McFeeters '73
Independence: How Much? How Long?
By Anne Mazick Levin '55

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