Dec 12 2009

Caring for those you love the most

By Kristin Hackler

She stared at nothing in particular as we talked. Her eyes wandered unfocused, glancing at but not seeing the tall conference room walls and scattered chairs. The only sign of anxiety was in her hands, and the hands of the next woman’s and the next. They twisted them in their laps, fingers running over rings and nails, constantly moving, constantly on edge; just as the women themselves live their lives.

Although women are more likely to have Alzheimer’s disease and other dementias*, an estimated 59 to 75% of caregivers are female, and one third of these caregivers are in fair to poor health.

“It’s probably the most arduous journey one can be on,” said a caregiver whose husband has suffered from Alzheimer’s disease for almost four years. “At its worst, it can be sad, exhausting and frightening. At its best, it’s a way to honor and care for a loved one in a self sacrificing way.” She sighed deeply and looked down at her restless hands. “A friend of mine once said that the journey through Alzheimer’s is like 500 funerals. Every day you say goodbye to a part of their life; a part of your life together.”

Caregivers are recognized for their service every November during National Caregivers Month, but there are programs across the country which work on a daily basis to lend a hand to the estimated 8.9 million caregivers in the United States. In the Lowcountry, Respite Care has worked for several years with local churches to help informal caregivers struggle through the process of shock, denial, acceptance and sacrifice.

At All Saints Lutheran Church in Mount Pleasant, Ginger Deig heads up the East Cooper branch of Respite Care, offering a patient care program from 10am until 1:45pm, Tuesday and Wednesday in the church’s fellowship hall.

“He loves it here,” said the wife and caregiver of a patient who has suffered from dementia for the past six years. “I don’t have to fight to bring him here. They’re wonderful people because they make each person feel special and the support group is an absolute lifesaver.”

Twice a month, Respite Care offers a support group for caregivers. One session is typically educational, with speakers visiting from across the United States, offering advice and helpful tips for dealing with different mental disorders. The second session is simple support. Friends, relatives and spouses of those suffering from dementia come together to pour their hearts out, leaning on each other for help and learning that, although their daily lives may be different, their basic experiences are similar and that there is hope even in their darkest times.

Laura Stefanelli is the director for the Johns Island branch of Respite Care, which offers their services from 10am until 1:45pm, Tuesday and Thursday at the Episcopal Church of Our Saviour on Betsy Kerrison Blvd. Although both programs have strong arts & crafts and interactive programs, the group at Church of Our Saviour seems to love singing more than anything else. Volunteers will often drop by to play songs on the church’s upright piano and participants sing along, either by following a lead or humming happily to the melody.

Betty Temple, a resident of Wadmalaw Island, has been married to Chub for 59 years and for the past ten years he has been suffering from Alzheimer’s. “Chub built our house; built the whole thing,” said Betty. “The plumbing, the electrical … all of it. Now he can’t change a light bulb.” For her, the Respite Care program has been a blessing. “He calls it ‘work’,” she smiled. “When it’s time to go to Respite Care, he says he’s ‘going to work’.” The breaks provided by the program have been particularly beneficial to Betty, as Chub has a hard time doing anything without her. During a recent hospital stay, Chub was found wandering the hallways, looking for her. “It’s a sad thing,” said Betty. “To me, the worst thing is to lose your mind. I think I could deal with physical problems much better.”

Another frequent visitor to the Johns Island Respite Care, Jenny Weinstein, nodded in agreement with Betty. Her husband, Bill, first came to Respite Care as a “volunteer”, but after several months of attending, he’s now comfortable as a participant in the program. Although Bill and Jenny have only been married for nine years, Jenny is quickly learning how to keep up with his needs, and her experience as a full time nurse has helped with her understanding and handling of his disease, though it hasn’t made it easy since she still works 12 hour night shifts on the weekends. “I just let him do as much as he can,” said Jenny. “We still have neighbors who come by, which is great, and he has a good friend who still takes him out to play golf. I encourage him to stay in touch with people and I’m always looking for activities for him to do.”

Both women pointed out how beneficial the Respite Care program has been for both of them. “I just want to emphasize how special this program is,” said Jenny. “It’s been so helpful to Bill and me.”

Their husbands were waiting in the hall for them after the program, and as Betty approached Chubb, his eyes lit up and he reached for her, wrapping his arms around her waist. Betty leaned down and kissed him gently on the head, running a hand through his soft hair. “How could you not love this wonderful man?” she said, half smiling and half to herself. Both couples left the church hand in hand, the women happy for the break and prepared for another day of challenges with little reward, except that they know just how deep their love is and are willing to give everything for it .

For more information about Respite Care and local programs and times, or to learn how you can volunteer with the program, visit www.smlccharleston.org, call executive director Carla Greene at 327-7470 or 723-1611, or email respitecare@comcast.net.

*Based on estimates from the Aging, Demographics and Memory Study (ADAMS) 2009. Facts and statistics on Alzheimer’s disease and other forms of dementia provided by the Family Caregiver Alliance National Center on Caregiving and the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures.

Facts about Alzheimer’s Disease:

• Female caregivers are more likely than males to suffer from anxiety, depression, and other symptoms associated with emotional stress due to caregiving.

• 48% of all caregivers are employed full time.

• 44% of caregivers are the children of a care recipient aged 50+.

• The duration of caregiving can last from less than a year to more than 40 years.

• For persons with severe dementia, hours of informal care received is around 46.1 hours per week.

• 14% of all people aged 71 and older have dementia.

• By 2010, there will be an estimated 454,000 new cases of Alzheimer’s disease per year.

• In South Carolina, by 2025, there will be an estimated 7,000 people with Alzheimer’s between the ages of 65 – 74; 51,000 between the ages of 75 – 84; and 45,000 over the age of 85.

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