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A Tribute to Caregivers:
Amazing Human Beings by Gregory Manifold

When Dorian invited me to speak at this occasion, she noted that this annual recognition event is a gift to all of you for your extraordinary dedication throughout the year. As I have thought about my own contribution to this gift – this speech – I fear I keep running up against one of my favorite books of all times, Alice’s Adventures in Wonderland. In one memorable scene, the Duchess says to Alice, “I make you a present of everything I’ve said,” and Alice thinks, though wisely doesn’t say out loud, “A cheap sort of present. I’m glad people don’t give birthday-presents like that.” It’s every speaker’s worst fear.

But I feel confident you won’t judge me as harshly as Alice judged the Duchess since I am here to tell you what you already know – that care givers ROCK. That you are indispensable building blocks of our society. That you do not simply substitute for family; you become family. That what you do day after day, month after month is nothing short of amazing. Of course, you don’t need me to tell you this, but it never hurts to have an outsider remind you of how wonderful you are.

Though, I must say, I don’t feel entirely like an outsider since I have known your big bosses, Rick and Dorian, for a number of years. In 1998, after working a decade and a half in Fort Wayne’s arts community, I made a move to the social service world by taking the position of executive director of the AIDS Task Force, where Rick was immediate past president of that agency’s board and where he still serves on our finance committee. Rick and I actually go back forty years – I was in the first graduating class of the very long-titled Huntington County Community High School, and, two years later, Rick and my brother were in the last graduating class of Huntington County Community High School. The next year the school board wisely shortened the name to Huntington North High School. But Rick and I will forever have to cram those eleven syllables onto resume lines that are far too short.

But back to all of you and the incredible value you bring to our community. To talk about you I want to talk about my mother. But to talk about my mother I have to tell you some history, some snapshots, that lead up to today. I’ll do a quick decade at a time.

In the 1950s, my great Aunt Della, older sister to my Grandpa Manifold, lived for several years in the home of Mrs. McCune as a caregiver. I have no idea how I remember that name 50 years later, and I was never clear what Aunt Della did for Mrs. McCune. Della was a tiny person weighing less than 100 pounds, so she likely didn’t offer a lot of physical help. But she was an old time farm woman in her 70s, a widow of 20 years who was earning a living and helping someone who needed her.

In the 1960s, in Huntington, I and several of my friends had a lengthy conversation with a woman in our church about caring for older relatives. I seem to remember that she was substituting in our Sunday School class. She emphatically argued that elderly parents and grandparents should be “taken in” (I believe those were her words) to their children’s homes because those older adults “had so much to teach us.” I don’t recall the various elements of the conversation, but I do retain a memory of thinking she was slightly old-fashioned. Both of our family’s surviving grandmothers were decidedly on their own, and, even if their condition changed, I couldn’t imagine them living with our family of five sons. This woman, however, was adamant about two things: the importance of providing care and the benefits received by the care giver.

In the 1970s my great grandmother McClarnon, my mother’s grandmother, was not at all well, but her daughters, including my grandmother, the eldest, labored for weeks to keep her at home, struggling to get her in and out of bed and to care for her, even though, at one point, these physical efforts caused my grandmother to hurt her back rather severely. I have always thought that one of the reasons those determined sisters worked so hard at keeping their mother at home was the fact that one of their sisters, my Aunt Gertrude, had had spina bifida since childhood and had lived a great deal of her quite independent life with my great grandmother. Those McClarnon women knew that care in the home was not only possible, it was the most human.

By the 1980s, my grandmother had begun her own slow fade. At first my mother from her northern Indiana home and her brother, who lived in Illinois, hired people to assist my grandmother in her own central Indiana home, where she had lived since her marriage in 1921. This worked for a time, but at some point my grandmother became paranoid and suspicious of these care givers. So, as she started to drift further, my parents decided to undertake her care and brought her to their home. They made a valiant effort one winter, but eventually they, too, discovered they were unable to handle the physical demands of care giving. In consultation with my Uncle Ben, they found a caring nursing home back near my grandmother’s home, and she lived out the rest of life there, just a few rooms away from her sister Gertrude.

In the 1990s, my father continued his journey into Alzheimer’s disease. In fact, my grandmother’s funeral in 1988 had been the last time that my mother felt it was possible for him to make a public presentation. At that funeral, he struggled for some time to begin his eulogy and was not able to read his remarks until my mother stepped to the podium to see the problem – and turned his notes the right way up for him to read. My parents had long planned to make an eventual move to a retirement community, and, slightly earlier than they had planned, they moved to the United Methodist Memorial Home in Warren, now called Heritage Pointe. Just days before the 1992 move to their recently completed townhouse at Warren, my father came down with a paralysis of his legs and was moved directly to the health care unit, where he remained with incredibly dignified and compassionate care until his death in 1994.

So there it is. Fifty years of care giving. Several different approaches. In general, each reflective of the times. But all of it bringing me to my mother, now 85 years old and doing pretty well.

As I said, my parents had talked for some years about one day selling their retirement home in North Manchester and moving to a retirement community. Even when they were younger, my father used to say that they were planning to make such a move so that we sons would not have to worry about their care. This attitude did not, I might point out, extend to the scores of boxes of accumulated “stuff” that my father could not bring himself to throw away. His statement on that was simply, “You’ll have to sort it all after I’m gone.”

When my father began to be less able to make decisions, my mother took charge of looking at retirement communities. They visited two North Manchester facilities: The Peabody Home, which I think is affiliated with the Presbyterian Church, and Timbercrest, a Church of the Brethren retirement home. My father, a United Methodist minister for half a century, gently chided my mother, with a hint of his former wit and wisdom still in tact, about whether she was sure she wanted to spend her retirement years surrounded by all those Church of the Brethren people, nice folk though they were. So they also toured the United Methodist-affiliated Warren facility and found a congenial home. I recall walking with them on their initial tour of the facility. My father, who often did not know either me or my mother, was greeted by person after person who knew him and my mother from their many pastorates in the North Indiana Conference. I knew Warren was a good fit even though he probably didn’t realize it.

My mother’s story since that move is, I think, exemplary of the immense range of care that all of you provide. She chose to move to an institution providing that care rather than stay in a private home. But to her, after a lifetime as a minister’s wife who set up and later repacked ten homes across northern Indiana, moving was not the trauma it is for those who don’t know the drill. In any case, her progress from 1992 to today is typical of what all of you know from year after year of working with the people under your care.

Before and after my father’s death, my mother lived in a townhouse, as independent as any condo owner with the exception of the addition of a buzzer that could alert the nursing staff of a medical problem. She could plant or not plant flowers outside, since all outside maintenance was handled by the staff. She ate what she wanted, came and went as she liked, was involved with larger community activities or stayed at home. She was independent and loved it.

In 2003 Mom had a seizure and blacked out, tumbling down the marble steps to the basement of the Trinity United Methodist Church in Huntington. Following several more seizures, two of which I had the terror to experience, a five-day stay in the hospital, and consultations with an array of doctors, she went home with her new prescriptions. Over the next four years her seizures never reoccurred, but she increasingly experienced a number of falls. After falling at the grocery store in 2005, she decided that she could no longer manage a household, and she moved into a two room independent living apartment in what I affectionately call the “big house.” Added to the emergency medical call button were two new care services: housekeeping and meals, both of which she absolutely loved. She continued to drive her car and to keep up her outside activities at the level she chose. She did take advantage of the skilled care unit available at Warren following a hip replacement, her fourth joint surgery, but, once recovered, she went back to her apartment.

As the falls continued to increase (20 in 2006 and over 50 in the first half of 2007), Mother contemplated and ultimately decided (with my input but without any pressure) that she needed the added help of assisted living. So in early 2007 she moved to a two room apartment in that area. New levels of care became available as aides dispensed daily medicines and helped her out with bathing. Everyone reminded her that the staff could help with anything else she needed, but my mother, who would help anyone who asked, finds it rather difficult to ask for help.

Once she sold her car, another decision she came to on her own, she began to take advantage of another service: modestly priced transportation assistance. She pays a small fee for a representative of the home to drive her to doctor’s appointments or she purchases a season ticket to her beloved Honeywell arts series in Wabash and rides the bus to performances. She even has her own private transportation system in her dear friends who purchased her car. They offered to take her anywhere anytime she wants to go. And she often takes them up on the offer, though she insists on buying them lunch as part of the trip. What is critical, what you see everyday, is that her new definition of her independence – now without a vehicle – continues to evolve.

In the middle of 2007, a rather routine test showed that the cause of her falls was, in fact, the particular seizure medication she had been prescribed. Once that was changed to another medication, the falls ended abruptly. To counter her gradually decreasing leg strength, she began using Heritage Pointe’s exercise facilities, and she bought a three wheel cart to increase her mobility. Later in 2007, in order to keep her expenses better controlled, my mother decided to move to a one room assisted living apartment, and in mid 2008 she moved to a renovated room of similar size, part of the home’s overall renovation plan, where she is quite satisfied and happy. She continues to direct the home’s choir and chime choir, trade observations with her buds at the daily Coffee Klatch, and keep in touch with friends and family via her computer. She loves her Harry Potter and Nicholas Sparks books, listens regularly to her favorite classical music, and pays her own bills. Now and then this or that gets a tad overwhelming, but she always finds her way through. The care she relies on keeps her an independent woman.

You know the reality of each of these steps my mother has enjoyed, because you provide them in people’s homes. My mother chose to move to a retirement community where these services are available because that fit her and my father’s personalities. And this is what you do each and every day you go to work.

You allow people to choose.

Shortly after my father died in 1994, my mother and I had a conversation that has been our guide in the ensuing 15 years. She said she would look forward to my help as she needed it, but “you have your own life to live and so do I.” Because of people like you – in her case working in an institutional setting, in your case working in people’s home – both parent and child have their lives to live as they choose.

Is something lost because my mother doesn’t have an Aunt Della living with her 24 hours a day?

Did I miss a lesson because I didn’t “take my mother in” to live with me?

You might as well ask whether we would be better people if we lived in a log cabin and drew water from the well.

The times have changed.

Most of my grandparents and their siblings lived within 20 miles of each other. My parents and their siblings spread out across Indiana and Illinois. My own siblings are scattered in Indiana, Illinois, Virginia, and Maine. The meaning of family, the resources for compassionate care, the responsibilities of the community – these have all changed. And you have changed with them.

You are aide, nurse, advisor, counselor, educator, and neighbor. You know more about some of your clients than some of their own family members know. You see, hear, touch, and experience how life changes from hour to hour and from year to year.

In the end, you yourselves change lives. You give independence. You share knowledge. You provide hunches. You become friend, family, support. Whether the person you are caring for is on the mend or winding down or maintaining her own plateau, you are and will always be a “companion to humanity.” There is likely no more noble title.

In the early 70s, I was one of you for a short time. My grandmother was coming home from one of the early hip replacement surgeries and needed some help. I was a free and easy unemployed hippie just out of college and I adored my grandmother, so I volunteered to stay with her during the week while my mom took care of the weekends. I cooked, cleaned, helped her with her walker. We also shared stories, and I had a fabulous time. But I finally had to move on when I realized how fast she was getting from room to room and how little she still needed my help.

Nothing I have said tonight can be as eloquent a recognition gift to you as the daily appreciation of your service by Rick and Dorian or the ongoing support of your efforts by your colleagues.

But what I can do is represent the people like my mother whose independence you foster and the families like me who surround them. And from this perspective, from this side of care giving, I can truly say: Thank you! You are all amazing human beings!



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