Charles Minges of Columbia spends most of each day helping his wife of 52 years with her most basic needs.
Geraldine, affectionately known as “Gerry,” suffers from Parkinson’s disease, spinal stenosis and dementia. Minges dresses her, helps her shower, feeds her, gives her medication, helps her in and out of a wheelchair, and drives her to doctor’s appointments.
He is a caregiver, part of a rapidly growing community of people around the country who provide full-time care for spouses, parents, children and other relatives with serious illnesses or disabilities. The number of people caring for those with Alzheimer’s disease or other forms of dementia is growing the fastest.
A recent study by the American Association of Retired Persons estimated that more than 40 million people in the U.S. are helping elderly or disabled loved ones, performing work that is worth more than $450 billion a year.
The study shows family members average 20 hours a week, but for many, the demand on time, energy and emotion is much greater. Patients with dementia, for instance, usually require round-the-clock supervision.
Family members of these patients will often do whatever it takes to keep their loved ones out of nursing homes, but a shortage of home health aides and the financial burden of home care, much of it not covered by Medicare, puts even more responsibility on the caregiver’s shoulders.
As baby boomers age and live longer, and with federal and state budget cuts limiting the number of programs available to assist caregivers, the challenges only continue to grow.
That’s why caregivers must learn about the responsibilities they face, and why individuals and churches need to do all they can to reach out and help, said Monica Dodds. She and her husband Bill run the Friends of St. John the Caregiver, a Catholic spiritual resource group for caregivers (www.FSJC.org). The couple also writes a column, “Your Aging Parent,” for Catholic News Service.
“People often don’t realize how much work caregiving is when they start,” Dodds said. “First you’re helping out with rides to the doctor, and then gradually the caregiver is doing more and more. We stress the idea that this is not a sprint, it’s a marathon. A person has to plan their care-giving journey as a marathon. If you go too gung ho and don’t get help for yourself and accept others’ support, pretty soon you’re going to burn out.”
The emotional toll
Caregivers deal with a gamut of emotions, ranging from fear to anger, or frustration and hopelessness when a loved one’s condition continues to decline, Dodds said.
They must also handle their loved one’s feelings, and the daily emotional roller coaster many patients go through as they learn to deal with an illness or disability.
“People will have a hard time understanding, for instance, why their mother is refusing help,” she said. “There’s emotional stuff going on both sides, and that can make for some tough days.”
Some people who are caring for an aging parent might also feel resentment if siblings or other family members don’t come forward to offer support.
Those who care for patients with Alzheimer’s or dementia must also face their loved one’s gradual loss of memory and awareness.
It’s particularly hard, Dodds said, when a patient no longer recognizes their spouse or child.
“That person is gradually slipping away from you, even if physically they might last for a number of years and need significant care,” she said. “For many caregivers, their grieving process starts a whole lot earlier. Their loved one is still alive, but they’re grieving the loss of the person they knew.”
Minges said the biggest challenge he faces with his wife’s dementia is the lack of communication as the condition progresses. Sometimes it’s hard to understand what she is saying or what she needs.
“There’s the constant question of am I doing too much, or am I doing enough for her?” he said.
Information is key
People can better deal with the difficulties and rewards of caregiving if they go into the process armed with as much information as possible.
Dodds urges learning as much about their loved one’s condition as possible, and gathering information about area support groups, plus local, state and federal programs that offer financial assistance and other resources for caregivers.
Minges said he did extensive research on his wife’s condition, and for a while took part in Internet discussion groups about Parkinson’s disease. Through research, he also learned about state programs that offer small annual stipends to help with his wife’s care.
“Get all the help you can, ask all the questions you can,” he said. “There’s all kinds of help and information available out there once you start looking for it.”
The need for rest
The 24-7 demand of caregiving causes many people to deny their own needs. Some caregivers get so caught up in their duties that they don’t look after their personal health or well-being, and give up treasured hobbies and activities.
“One of the most important things they can do is start caring for themselves,” Dodds said. “For many who are in the thick of it, it’s hard to stop and ask ‘What should I be doing for myself?’, but it’s very important. There’s a real need to be able to step back. Sometimes it can be as simple as going out on the front porch to sit there for a few minutes. We all need time to be able to breathe. The challenge is finding the time.”
Learning to look out for her own needs was a big challenge for Doris, who attends Corpus Christi Church in Lexington and cares for her elderly mother at home. She asked that her last name not be used for privacy reasons.
“Caregiving is just a hard job, but it’s fulfilling,” she said. “The main thing I learned is you can’t do it all. A caregiver has to think of themselves sometimes, and that’s something I totally forgot to do at the beginning. You can’t do this job unless you take care of yourself.”
On Thursday mornings, Doris brings her mother to a respite care program offered by Our Lady of the Hills Church in Columbia, one of two parishes in the Midlands that offer the service. St. Joseph Church on Devine Street also runs a Thursday program.
At respite care, trained volunteers serve meals and plan activities for clients so their caregivers have a few hours to run errands, do housework, exercise or simply rest.
“Those hours give me time to do whatever, whether it’s something or nothing,” Doris said. “I can do housework or I can read a book. It’s my time.”
A variety of resources are available to caregivers.
Two parishes in the Diocese of Charleston currently offer respite care:
• Our Lady of the Hills Church at 120 Marydale Lane in Columbia has “Helping Families Cope” from 10 a.m. to 1:30 p.m. Thursday. Call (803) 772-7400 ext. 2.
• St. Joseph Church at 3600 Devine St. in Columbia offers weekly respite care 10 a.m. to 2 p.m. Thursday. Call Sister Julienne Guy at (803) 540-1901.
On the web:
• The Friends of St. John the Caregiver is an international Catholic organization that offers spiritual and practical support for caregivers, including prayer, (www.fsjc.org). They also offer a free book, “The Little Book of Caregiver Prayers.” Call 1-800-392-JOHN (5646).
• Resources and spiritual support for individual caregivers can also be found at www.YourAgingParent.com.
• Parishes and groups that want to help by offering support groups, respite care and other programs can learn more at www.CatholicCaregivers.com.
• If you are caring for a loved one with Alzheimer’s disease visit: www.handsonhealth-sc.org and click on “Go Local-SC”.
Here’s how to reach out to caregivers in your own family, neighborhood or parish:
• Offer to help with daily tasks such as grocery shopping or other errands, light housework or yard work.
• Prepare a home-cooked meal or offer to bring one from their favorite restaurant.
• If the caregiver would like some company, visit them at home. Just an hour of conversation over coffee can do a world of good. If visits aren’t possible, phone calls can be a source of support.
• If the caregiver can get away for a few hours, take them to a movie, shopping, for a walk or beach outing.
• If their loved one can go out, offer to drive them to Mass, a doctor’s appointment or other errand so the caregiver has a break.
• Offer to sit with their loved one for a few hours so the caregiver can go out. This can be especially valuable on a Saturday or Sunday if they want to attend Mass.
• Make sure caregivers and their loved ones have access to the Eucharist. Put them in contact with extraordinary ministers of Holy Communion at their church.
• Caregiving can be a strain on family finances. Gift cards for gas, groceries or from stores like Walmart can be a huge help.