By Michaela Gibson Morris/NEMS Daily Journal
– Editor’s note: Joyce Long’s mother, Elaine Pope, passed away peacefully surrounded by her family on Tuesday, May 17, 2011, after this story was reported and written. The family still wanted to tell their story to honor her and help other caregivers in their journeys.
By Michaela Gibson Morris
Taking care of an aging spouse or parent at home is a marathon, not a sprint. Caregivers have to pace themselves and surround themselves with a strong, responsive support network or they risk breaking down.
Joyce Long of Mooreville has been the lead caregiver for her mother Elaine Pope since she retired in January 2010, but she’s quick to say she’s not her mother’s only caregiver.
“If I didn’t have help, there’s no way I could do this,” Long said.
Long’s entire family surrounds her like spokes in a wheel to keep the world turning. Her brother and sister who live in Lee County, Betsy Dunn of Plantersville, and Charlie Gregory of Mooreville, split the weekends so Long and her husband Buddy can watch grandchildren’s ball games or get away.
They keep sister Shirley Hall, who lives out of state, connected with what’s happening, even though she can’t be there.
In addition to medical support from NMMC Home Health and Hospice care, the Pope’s grandchildren and their spouses pitch in and help. Long’s daughters-in-law help her keep the Mooreville home bright and tidy.
But there’s not just one way to build that network.
Edward Raper of Tupelo has knitted together a web of community resources and family over a decade of caring for his wife, Sue, who has Alzheimer’s disease.
One of the most important has been the First Friends of Amory, which provides respite care for Alzheimer’s caregivers and enrichment activities for those with the disease, Raper said. He takes his wife to the center staffed primarily by volunteers, twice a week. He uses the time to work out at the Gilmore Memorial Wellness Center, which he considers a key to his ability stay the course as his wife’s caregiver.
“I don’t think I’d have the strength I’ve got today,” said Raper, who was named Caregiver of the Year in 2010 by the Mississippi Department of Mental Health. “It gives you strength as well as stress relief.”
It’s small wonder that caregivers often put their own needs last. It can be physically taxing to manage medicines and medical care, meals, baths, toileting and personal hygiene on top of running a household. There’s also the emotional and spiritual toll of witnessing the decline of a once independent, vibrant adult.
“There’s a high potential for burnout,” said Sonia Gossett, a psych nurse with NMMC Home Health.
Caregivers can easily become isolated from the family, church and community support networks they need to function over the long term, Gossett said.
“We take it for granted that we can jump in the car to get groceries, go to Walmart, the post office,” Gossett said. “Most caregivers don’t have that option.”
A few hours off to run errands, get a cup of coffee or go to church on Sunday can help caregivers replenish their internal stores.
“If they have someone just for a few hours, that’s huge for caregivers,” Gossett said.
Finding community resources is key, Raper said. In addition to First Friends, Raper uses a program through Three Rivers Area Agency on Aging that covers respite care.
The two four-hour blocks each week give Raper the time to get groceries, run errands, make doctor’s appointments and do bigger projects around the house. It also lets him get to church once a month.
Raper’s Sunday school class fed them for five years, a blessing during the more difficult, combative stages of Alzheimer’s disease. His son and daughters and their families often visit on the weekends.
Although he does have low times, he’s able to keep on an even keel.
“I see blessings all around me,” Raper said. “I’m thankful for my health.”
‘Cherish every day’
In the middle of the physical work of care giving and the grief of watching a loved one slip away, it’s important to stop to smell the roses.
“Just cherish every day,” is Long’s advice to other caregivers.
Even though there have been difficult times and there’s the grief of knowing their mother’s days on earth are numbered, there have been beautiful moments, such as sitting in front of the fireplace bundled with her mom and watching the snowfall outside.
“I would not take anything for this time,” Long said. “It’s precious memories.”
But that doesn’t mean it’s always going to be easy. Caregivers have to gives themselves permission to accept their emotions as they come. They should not feel guilty when the responsibility of caring weighs heavily on their shoulders, Long said.
“You just have days when you’re so stressed, and you get overwhelmed,” Long said.
Connections with other caregivers can be invaluable, like the one Long has with a former co-worker who has been caring for her terminally ill mother.
“We’d just call each other and cry over the telephone,” Long said of her friend, whose mother passed away earlier this spring. “She still calls to check on Mom.”
Caregivers need to ask for help, but they shouldn’t feel obliged to take offers of help they aren’t comfortable with, Gossett said.
For one caregiver, an offer of housecleaning might be incredibly welcome. For another, it may infringe on their sense of privacy.
“Sometimes a smiling face and a casserole means the world,” Gossett said.
Know your limitations
Caregivers have to be aware of their limitations, emotionally and physically, Gossett said.
No matter how much a caregiver may want to care for a declining spouse or parent, if they are outweighed by 100 pounds, they will not be able to lift them if they become unable to move themselves.
“We have to acknowledge our limitations,” Gossett said. “It doesn’t mean we’ve failed.”
The decision to care for a spouse, parent or other loved one at home is a complex interplay of family resources – physical, mental, spiritual and financial. What works for one family may not work for another.
While the decision to consider a nursing home is a difficult one, many people don’t anticipate that it can be difficult to find an available bed at a nursing home close to home.
“Sometimes people have no choice,” Gossett said.
Caregivers say you just make the best decisions you can for the person you love, knowing that the best decision may be something different in a day, week, month or year.
“I don’t think I’m any kind of special person,” Raper said. “Lots of people do this. … We just do what we feel is right”