"What happens to a person is less significant than what happens within him." - Louis L. Mann
When one hears the word "caregiver," a nurse's aide-type picture usually comes to mind. This is someone probably wearing scrubs, taking vital signs, making rounds to homes or rooms at the nursing home or assisted living facility. In reality, those caregivers - trained in that profession - are in the minority.
Informal or family caregivers make up 29 percent of the adult population in the United States providing help to the ill, disabled or elderly that could include taking them for walks, daily check-in phone calls, fixing meals, assisting with personal hygiene tasks, preparing and administering medications, doing their shopping or providing transportation and accompanying them to doctors' appointments. That was 65.7 million people in 2012, according to the National Alliance for Caregiving. Nearly 15 million of those caregivers were assisting spouses, relatives or friends with dementia or Alzheimer's disease.
A separate survey called "Home Alone" by AARP found that virtually all (96 percent) of these informal caregivers helped their "patients" with activities of daily living (ADLs), such as bathing and dressing, or instrumental activities of daily living (IADLs), such as organizing medications and getting groceries. Almost half of those surveyed (46 percent) performed tasks usually reserved for medical personnel, for instance changing dressings or administering injections.
Two-thirds of family caregivers are women; the average age is 48. More than one-third of the women take care of more than one person, and most caregivers between 50 and 64 years of age (70 percent) are caring for parents.
This largest source of long-term care was valued at $450 billion in unpaid wages for the year 2009. Meanwhile, a report by MetLife states that a woman who leaves the workforce to take on caregiving duties for her parents loses an estimated $142,693 in wages, $131,351 in Social Security benefits and $50,000 in pensions. In 2007, 37 percent of adult caregivers left their jobs or decreased their work hours to provide care services.
While there are rewarding moments, family caregiving can be emotionally, physically and financially taxing.
Charlene Moffo, of Mt. Pleasant, says that she, her brother and sister shared care responsibilities once her parents could no longer live independently. At first, her brother built an apartment for them in his home. When they needed more care, Moffo's sister took her father in, and her mother moved in with empty-nesters Moffo and her husband. Three years later when her mother fell, Moffo struggled with the decision about moving her to a care facility. Moffo and her husband both worked full-time and had had professional caregivers attending to her mother during the day.
"I thought I was doing the worst thing in the world by not bringing her back home," she said. "But she's safe at the facility. It's hard to have other people in the house all the time, and now I get to do things with my kids and grandkids. Before it was either my husband OR me who got to go."
Since Moffo works next to the care facility, she spends lunchtime and dinner time with her mother. Other family members meet her there, too, and even have family events on the grounds, so her mother is included, and they can all visit. Her grandchildren often have dinner with their great-grandmother and the other residents.
"It's good for the kids to see and be around older people," Moffo noted. "They have to know this is a part of life. I encourage them to talk to the other residents and treat them with respect. It works for all ages."
Moffo is not unique. Family caregivers bounce themselves from husbands' and children's needs to the care recipient's obligations to work responsibilities. Most put social relationships and their own care - exercise, medical appointments, haircuts, etc. - on hold. The "catch-22" of this is that one can only be most effective taking care of someone else when one pays attention to his own health. Pat Lake, caregiver support coordinator for the Area Agency on Aging/Region 9, noted an estimated 50 percent of caregivers die before their patients because of the stress and lack of attention to their own health, including increased risk of depression, alcohol and drug abuse and chronic health problems like diabetes and heart disease.
"Not everyone is a caregiver," she said. "Even people who become caregivers can go through various stages, like stress, burnout, anger, grief, depression, all of them normal. Accept help and find some support. You're going to hit the wall if you don't take a break for yourself."
What are some of the signs that it's time to seek help? See if any of these statements from the Family Caregiver Alliance sound familiar:
Irritability, sleep deprivation or sleeping too much, decrease in physical activity, gaining or losing weight, losing touch with friends, feeling overwhelmed and canceling one's own appointments will all contribute to a decline in health. "Help" can be as simple as deep breathing exercises, looking up information about the patient's disease, starting a notebook to keep track of information, medications and conversations, or making a phone call to a pastor, friend or service agency like the Area Agency on Aging (800-945-4250, www.aaa9.org). The smallest thing will bring some relief and strength. What not to do, said Lake, is take on blame for what is happening, guilt for feeling inadequate or responsibility for doing everything.
This writer realized how caregiving had taken its toll when she was invited to Florida for a long weekend. Away from the house in a different setting for only two days, her body shifted into a different mode: relaxation. Upon her return, she resumed the yoga routine she'd neglected for two years and began losing weight and gaining energy.
Lake and co-worker Laurel DuBeck, RN, who lead various workshops and support groups on caregiving and dementia, encourage caregivers to start by writing down a small goal or an enjoyable activity, for instance a 15 minute walk on Mondays and Wednesdays. Put the goal on the refrigerator, on the bathroom mirror or on the car dashboard as a reminder to take this time out for one's self. The benefits of taking 30 minutes out of 10,080 per week for health and sanity far outweigh the sacrifice.
Caregivers may also experience grief, either with their patients' passings or with the realization of role reversal and the end of a life cycle. There are, in general, five recognized stages of grief designated by psychiatrist Elisabeth Kubler-Ross in 1969: denial, anger, bargaining, depression and acceptance. Not everyone goes through all the stages, and there is no time limit attached to grief. One person may reach acceptance within a few weeks, while someone else remains overwhelmed and sad a year or more later. What is important is not the time spent grieving, but that one faces it in order to heal. Keeping the pain and feelings inside will prolong the process, so it is important to express them through talking with someone, through art or journaling, through one's faith, through exercise or through crying and laughing.
Research has found that both crying and laughing are therapeutic and even healing. Crying lowers blood pressure, pulse rate and stress. Without this relief the body increases its risk for cardiopulmonary disease and its serious consequences. In addition, tears help the body eliminate toxins associated with stress reaction. If nothing else, studies at the Regions Hospital in St. Paul, Minn. found that 85 percent of women and 73 percent of men noted that they felt "less sad and angry" after crying.
Laughing is as beneficial as crying and possibly more so, even in grief. Physically laughter lowers blood pressure, and it increases blood flow by dilating the linings of blood vessels. It increases production of antibodies and immune cells that fight infection, and The New England Journal of Medicine reports that 10 minutes of laughter can provide pain relief for up to two hours. A study at Stanford University found that one minute of laughter can be comparable to 10 minutes of aerobic exercise on the rowing machine. Emotionally, laughter is a release mechanism for stress, grief and pain. Remembering and laughing about good times can ease pain and help the healing process begin.
Caregivers can try watching funny movies or shows even with their patients. This writer also has the car radio set at 1400 AM, the comedy station, with streaming stand-up by dozens of comedians as a quick "pick-me-up."
Caregiving is not easy, but support and peers are out there. The Alzheimer's Association holds a support group at the First Presbyterian Church in Martins Ferry on the fourth Tuesday of the month at 1 p.m. First time attendees should call (800) 272-3900 to confirm the date and location.
On Tuesday, May 6 from 10 a.m. to 3 p.m. the Belmont County Adult Services Coalition will host its 15th Annual Caregiver Support Fair at the Ohio Valley Mall. More than 70 exhibitors will have information on home health agencies, in-home services, nursing homes, assisted living, medical equipment and much more.
Caregivers should expect days of normalcy and days of despair, but remember all the days are temporary. The experience is educational and emotional, so it is important to decompress by staying healthy and getting some regular quiet time. With the patient, take the time to learn more about family history, so it can be passed to the next generation. It may be a time for resolutions; welcome them.
This writer like most others did not expect to become a caregiver, and as difficult and daunting as it was, she is grateful for the opportunity.