Twenty years ago, Mary Chaput, the director of a local program for at-risk youth, started noticing something that would change her life. Her mother, an active woman in her 70s, was beginning to slow down. Chaput found herself spending more and more time driving her mom to doctors' appointments, cooking and cleaning and helping sort through bills and insurance statements.
She was like millions of Americans: happy to help someone to whom she owed so much, yet increasingly aware of the burden. Good thing she enjoyed it. Chaput left her career, got a degree in aging studies and today, as a program director in the Anne Arundel County Department of Aging & Disabilities, focuses on another kind of at-risk group: family caregivers.
Next weekend, county residents will benefit from Chaput's experiences as she directs the ninth annual Caregiver's Wellness Day, a free event at which family caregivers (that is, the unpaid kind) will be able to take a break from their duties, breathe a sigh of relief and learn methods for reducing the stress and guilt they often live with.
Free respite care is available to all attendees who request it by Monday, Sept. 13.
"Caregivers do not take care of themselves," says Mary Fridley, a nurse who has worked in the geriatric health field for more than 20 years, including as a consultant for the county. "They don't take the time to relax, enjoy life or play. When that happens, they're likely to become ill themselves."
About 60 people are already registered for an event that will include destressing exercises, talks by industry experts and, in Chaput's words, a chance for caregivers to "let their hair down and enjoy themselves — and to realize others are out there doing exactly what they're doing."
It's not just a few. Recent studies suggest that between 40 million and 120 million Americans are offering family care of some description. According to the website for the Johnson & Johnson Caregiver Initiative, "This burgeoning army of family caregivers has become an essential component of the nation's health care system, providing more services in the home — free of charge — than the federal government provides in all settings combined." A 2004 report co-sponsored by AARP set the value of this unpaid care at $257 billion per year.
Paradoxically, family caregivers tend to feel isolated, as though no one else understands their situation. Chaput was happy to discuss the field, and next week's event.
Question: Why is such a day important?
Answer: This is our ninth year, and we'll get people who have come to every one. But we're also shooting for people who have never done this. It'll give them a chance to be around others who are going through the same things they are, who understand the frustrations and fears they have.
For a lot of people, this will literally be the first time they've ever left their loved one in the care of someone else. They'll learn something crucial: "Hey, the world isn't going to come to an end if I'm not there 24/7." Maybe then they'll find ways to [take time off] again so they can take care of themselves better.
Q: Why do so many caregivers have that sense of overcommitment?
A: Family caregivers often don't even see themselves as caregivers. They think, "Well, I'm the daughter," or "I'm the spouse." To them, caregiving is a family function. "I'm the wife; he took care of me for so many years. Now it's my turn." And a lot of guilt can come into it. Let's say you have an adult son or daughter taking care of Mom or Dad. They probably have kids of their own or work full-time. They see [caregiving] is simply what they're supposed to be doing.
Q: Is that wrong, this notion that caregiving is simply a family function?
A: Well, think back to the days of TV shows like "The Waltons." Generations [within families] did live together. It was natural. But now, we're all over the place. I have one [client] who lives in Hawaii; her mom lives here in Annapolis. She comes back here every couple of months to attend doctor visits, see how her mom is doing, to check in on the local caregivers. Even if you're many states away, you still haven't given up the role.
Q: Each caregiving situation is unique, but what are some of the types you see?
A: Some caregivers have the person in the house with them. Others aren't in the house but are in the same general location. Others, as I've said, are far away.
Now that more Americans are living longer, caregivers are also getting older. Caregiving "children" might be in their 70s or more. And another group you've probably never thought about is the growing population of grandparents and great-grandparents who are now bringing up their grandkids and great-grandkids. Maybe their daughter or son is incarcerated or [deceased] or involved with drugs.
Q: What, if anything, do the disparate types of caregivers have in common?
A: First, feelings of guilt — the feeling that you're never doing enough. Second, stress — the stress of trying to manage everything. Lots of caregivers still work full time and are raising their own kids. Especially in this economy, they're afraid that if caregiving issues cause them to miss too much work, they'll lose their jobs. There's a lot of stress in just juggling their time.
Q: Are there common situations that few outsiders might know about?
A: I was just talking with co-workers about that situation where one sibling lives close by, and how often that sibling feels that nobody else helps. Sometimes … the other family members [feel], "Well, you're there; you take care of it." We teach caregivers how to reach out and get family help. For example, you might not be there to give day-in, day-out care for Mom, but maybe you're a financial person and can take care of the bills.
We're also seeing a jump in young-onset dementia now — more people in their 50s developing dementia. The Alzheimer's Association is studying why, but they haven't come up with answers yet. If the [sufferer] was the primary breadwinner, the spouse might have to go back to work. [The family] might have teenage children or younger. Yet at that age, [patients] don't qualify for Medicare.
We started a young-onset support group last year. It already has 30 people in it.
Q: Generally speaking, what's the role of a department like yours?
A: Caregivers often feel overwhelmed and alone. They might not even know what questions to ask. But there are lots of resources out there.
Every area in the U.S. has something called the National Family Caregiver Support Program. It's federally granted and provides funding [for caregivers] to each state. … The program mandates that we provide certain services — information, support programs, educational opportunities, respite care and [more]. People who need help should call their local department of aging.
Q: Other than Caregivers' Wellness Day, what does your department offer?
A: Here in Anne Arundel, we use [most] of our limited resources to provide education and support. We have monthly support groups, where caregivers just meet each other and talk. We have educational [events] such as this Caregivers' Wellness Day, and a caregivers' conference every spring. We do workshops throughout the year; this fall, [it's] a three-part series on dementia at our senior centers.
We also keep a registry of self-employed local workers who do home care. They must pass stringent background checks and take a three-day training course from us. Family members can then call us and say, "I need help with Mom, maybe someone to come in two times a week for four hours," or "I'm having trouble getting Mom to bathe; can I get [a respite-care worker] to come help with that?" We'll provide a list of five or six that they then interview and hire.
Q: Is money ever available?
Last year, we were able to provide about 200 caregivers with [$200 grants] for respite care. It's not a lot, but to some, it might mean just a chance to get away for a weekend — to realize the world won't fall apart. We have helped provide emergency communication systems — if Mom falls, she pushes a button for help — and durable medical goods like lift chairs, those ones whose seats rise gradually to help a person get into a standing position. Those can save the loved ones and their elderly caregivers from getting hurt.
Q: What will be some of the highlights of Caregivers' Wellness Day?
A: The day will give people a chance to relax, de-stress, talk to each other, even exchange phone numbers. It's also educational: It will teach [caregivers] how to care for themselves. Kim Burton, a wonderful speaker from the Mental Health Association of Maryland, will start off by speaking about communication. When someone has dementia or a chronic illness … everyone [involved] becomes afraid to cause insult, to say something wrong or to overstep boundaries. Kim will talk about saying what you need to say — "Honey, I've had a really bad today; I'm afraid I can't do one more thing. Can you call out for Chinese?" — in a way that will be clearly heard by others.
[Guests] will also have [six] breakout sessions to choose from, including [ones] on music therapy, deep-breathing yoga techniques and guided imagery. In the afternoon, a physical therapist will discuss the mechanics of caregiving — that is, how caregivers can help their loved one get in and out of a car, for example, without straining their own back and legs. Those kinds of things are essential. I wish I'd known them when I was caring for my mother.
Our final speaker, a wonderful health and wellness instructor named Ann Shums, will wrap things up with a talk called "Having Hope and Humor."
Q: Humor?
A: Well, you've heard of black humor, where you look at a terrible situation and just laugh? Sometimes things can seem hopeless if you don't change your perspective. Instead of seeing Dad circling the house and letting it get on your nerves, try remembering when your own kids were learning to walk and went around in circles. These things aren't funny, but they are funny. As Ann says, "Don't be locked into guilt and fear."
Q: How many caregivers do you expect?
We're shooting for between 75 and 100. In the past, we've had 120 or more. But we're not putting a limit on it. Whoever wants to come can come.
Q: How does the future look for family caregiving?
A: Five years ago, when I started in this position, if I heard of a person who was 100 years old, I thought, 'Wow.' Now I deal with someone that age once or twice a week. People are living longer. But they're not necessarily healthy. And now that the baby boomers are [hitting retirement age], we're going to need more caregivers than ever. But the boomers had fewer kids than their parents. And though this kind of work is wonderful, and many people love it, it's hard to get young people interested.
Where will the caregivers come from? I don't know. It's a little depressing, isn't it?
jonathan.pitts@baltsun.com
If you go
What: Caregivers' Wellness Day
When: 9 a.m. to 3 p.m., Saturday, Sept. 18
Where: Annapolis Senior Activity Center, 119 S. Villa Ave.
Admission: Free to anyone caring for a family member, neighbor or friend.
Registration and more information: 410-222-4464, ext. 3043 or http://www.aacounty.org/Aging. Free in-home and out-of-home respite care available. Call by Monday, Sept. 13 to make arrangements.