Care for the caregivers
Posted on Tuesday, May 6, 2008
URL: http://www.nwanews.com/adg/Style/224943/
For years they take care of you or work along side you as equals … and then something changes and your role in the relationship has to change, too. “You think you’re going to get married and grow old together, and then there is this bend in the road,” says Jo Davis of Little Rock. On the day in 2002 that Davis’ husband, Joe, was diagnosed with Alzheimer’s disease, his doctor advised him to “get his house in order.” He immediately set up appointments to have his will and living will updated and to appoint powers
of attorney to deal with health and financial issues. “He did all of that to make certain those documents were in place while he was rational and still knew what was going on,” says Davis of her husband, who died in December at age 78. “That is, oh, so important.” But even without those issues, taking care of a sick loved one can take a tremendous toll on a caregiver’s finances, health and general well-being. The National Family Caregivers Association says that in 2004, the latest year for which data were compiled, there were 272, 053 family caregivers in Arkansas and about 50 million in the United States. The organization says that the extreme stress experienced by family caregivers has been shown to age people prematurely and can decrease a caregiver’s life span by as much as 10 years. And, it says, the stress of taking care of a family member with dementia affects a caregiver’s immune system for up to three years after their caregiving ends, increasing the chance they will develop a chronic illness themselves.
“It’s so important that caregivers take care of themselves because if they get burned out, worn out or hurt, the poor person they’re caring for is in even worse shape,” says Dr. Jeannette Shorey, a board member for Lifequest of Arkansas, a nonprofit group that strives to help older Arkansans stay physically and intellectually active. “It’s not a trivial thing for caregivers to take good emotional and physical care of themselves.” That’s often easier said than done. Rebecca Desbrow of Little Rock has been taking care of her mom, Faye Wilkins, since she was diagnosed with Alzheimer’s two years ago. Desbrow is an only child and her father and grandparents are deceased. “It’s just me and her,” says Desbrow, 39. “When you’re with them all the time, you become their security blanket. You’re their only attachment to reality.”
Her mom can’t be left at home alone for any length of time, a lesson learned after Desbrow and her husband and son left for church while Wilkins was still sleeping one Sunday morning.
They returned home just in time to find Wilkins in front of the stove, with a 6-inch gas flame blazing on a burner. She was cold, she explained, and was trying to stay warm.
Desbrow measures out Wilkins’ medicines to make sure she doesn’t take too much or forget to take it, prepares her meals so she won’t cut or burn herself and to make sure she remembers to eat regularly, and drives her to and from doctor appointments and tells physicians about health symptoms her mom won’t remember by the time she’s in the examination room.
Wilkins, 73, had a full-time job in guest information at a Little Rock hospital until she was diagnosed. She sought help when she started forgetting basic screens she pulled up on the computer.
“When people would say they needed to see someone, she would forget their names before she could type them into the computer,” Desbrow recalls. “That’s how she knew something was wrong.”
Desbrow has taken over her mom’s checkbook and bills, absorbing as many of her expenses into the family budget as possible. Prescriptions alone cost $ 350 a month and there are insurance policies and other obligations.
She often feels drained, exhausted by the work and stress involved with caring for her mom. She has bouts of depression, irritability and anger and then she suffers from guilt, condemning herself for not rising to the occasion with as flawless a character as she feels she should for the woman who so lovingly cared for her as a child. And then there’s the grief.
“It’s so hard. With this disease, they don’t feel sick,” Desbrow says. “So it’s even more difficult in a way. All you do is watch your person disappear.”
Desbrow participates in two support groups offered through Alzheimer’s Arkansas, talking with other caregivers about how they cope.
Priscilla Pittman, program coordinator for Alzheimer’s Arkansas, meets with Alzheimer’s patients while “someone else is meeting with the caregivers about how to make a lot of difficult decisions.” Her goal is to see that the patients benefit from the gathering as much as their caregivers.
“I tell people with dementia that they need to have 10 minutes of conversation with someone other than their spouse at least once a day,” Pittman says. “When you’re with someone you’re building bridges.”
People with dementia benefit greatly from mind-stretching activities, especially activities that allow them to feel useful, like filling donated coffee cans with beans that they can label and deliver to food kitchens, or sanding cutting boards or even sorting junk mail into accordion files.
“You say, I appreciate you,” Pittman says. “Thank you, thank you, thank you. And it makes a big difference.”
Wilkins volunteers with Alzheimer’s Arkansas, putting together packets that alert emergency personnel to information about Alzheimer’s patients who might be inside homes.
Pittman provides caregiver support over the phone, even talking with patients during the call about breathing exercises to calm them when they’re agitated or offering other distractions to help them feel better.
Jeanie Frauenthal, communications officer for CareLink, says coordinators visit elderly central Arkansas residents who request assistance to evaluate their need and eligibility.
“Sometimes there’s an adult caregiver there that they didn’t even know would be there, and in the course of the visit they find out that this family caregiver is under stress,” Frauenthal says. “They can evaluate the caregiver to find out what shape they’re in or they can just get a packet of information about resources and support groups for different situations, like Alzheimer’s and stroke and other types of support groups in the area. That’s one of our main missions, to help family caregivers.”
Bette Fancher, director of community relations for the Area Agency on Aging West Central Arkansas, says there are $ 1, 000-a-year federal grants available for people in that 10-county area — Garland, Hot Spring, Clark, Pike, Montgomery, Perry, Conway, Pope, Yell and Johnson — aimed at providing respite care for those who are caring for someone 60 or older.
There are similar grants available through other area agencies on aging, although funding is limited and grant amounts vary.
Also in the West Central Arkansas agency area, there is a Senior Companion Program, through which volunteers 60 and older are matched with elderly people in the community who need companionship as well as assistance with things around their homes or with transportation within the community.
The agency offers in-home personal care as well, sending a case manager who can determine if the person is eligible for Medicaid before scheduling regular visits based on recommendations by their doctor. The same in-home care, offered on a private-pay basis for those who don’t qualify for Medicaid, can offer some relief for caregivers, who can take advantage of the time a nurse is with their family member to run errands or to rest.
Area agencies on aging can also make referrals to adult day care or respite care centers.
Kaye Curtis, president of the Arkansas Adult Day Care Association and director of senior services for the Northwest Arkansas Economic Development District, a partner of the Area Agency on Aging of Northwest Arkansas, is working to open the Forest House Adult Day Care Center in Fayetteville.
“The adult day care is that step between home and nursing home. They bring them during the day for services with trained staff doing therapeutic care,” Curtis says. “By bringing the spouse or parent to the day care, it gives the [caregiver ] a chance to take care of business, run errands and maybe have a little break themselves and be able to keep their health — mental and physical — at a good level.”
Curtis estimates that fullprice adult day care costs $ 70 to $ 80 a day.
“A lot of people can’t pay that,” she says.
Forest House, which will be established in a donated brick house, would accept Medicaid payments of about $ 5 an hour, bringing the daily costs to families down to about $ 40.
“But for those families who can’t afford to pay that, we have United Way funding that helps pay for some of the hours of adult day care or local churches will help support us with cash donations to sponsor or give scholarships to families,” Curtis says.
Forest House already has furniture and supplies, but Curtis is searching for startup money to hire staff.
The Caring Place in Hot Springs has respite care four days a week. Through the Memories in the Making art program from the Alzheimer’s Association, the adults can use watercolors to communicate, even when verbal skills fade. The facility also has a Wii game system so patients — especially men, who tend not to enjoy painting and craft projects as much — can get physical and mental exercise by fishing, bowling, playing tennis, golf and more. The Caring Place, an outreach of First United Methodist Church, has been open 16 years.
Jo Davis depended on an adult day care — Helping Hands at Pulaski Heights United Methodist Church — for help with her husband, Joe, because there was no one in the immediate area who could stay with him when she was out.
She finally had to find a nursing home because she could no longer keep Joe safe. When she slept, he would wander. She gave a photo of him to the police station to make sure they knew that he was an Alzheimer’s patient and should not be out alone, but that was no guarantee that if he left home without her knowledge he would be brought home safely.
A friend told Davis she did not need to go to the nursing home every day.
“‘ Need to’ is not the term,” she says. “I wanted to. You are drawn to your loved one. And though I could not continue to meet his needs in our home, there are many who do and that, by choice, would have been what I would have done. Had it been cancer or diabetes or anything else, it would have been no different.”
The strong, kind man she met at a Sunday School activity was physically whole but he had been disappearing from her life bit by bit. Still, Davis visited Joe every day except Thursdays — the one day she allowed herself to take care of other things — until he died.
“I pledged to him that I would care for him as long as I was physically able,” Davis says. “He was a man of courage, because he did not break down and cry or carry on or discuss his condition daily. There were those few intimate times that it seemed right to discuss it. In our situation, we never discussed nursing homes. He just simply knew that I was in this for the long haul and that I was committed to caring for him and that was, I think, soothing and satisfying to him.” There is help out there Listed below are various agencies and advocacy groups that are available to help aging Arkansans and their caregivers: Alzheimer’s Arkansas, 10411 W. Markham St., Suite 130, Little Rock, (501 ) 224-0021
www. alzark. org Alzheimer’s Association 24-hour help line, (800 ) 272-3900 www. alz. org / alzokar / Central Arkansas Center, 411 S. Victory St., Suite 202, Little Rock, (501 ) 265-0027 Western Arkansas Regional Center, 320 N. Greenwood Ave., Fort Smith, (479 ) 783-2022 Bella Vista Outreach Center, Highlands Crossing Center, 1801 Forest Hills Blvd., Suite 200, Bella Vista, (479 ) 855-2288 Fayetteville Outreach Center, 1125 N. College St., Suite 466, Fayetteville, (479 ) 713-1466 Kindness Inc., 942 Coley Drive, Mountain Home, (870 ) 425-6475, (877 ) 543-8271 www. kindnessinc. com LifeQuest, 3805 W. 12 th St., Little Rock, (501 ) 225-6073 www. lifequestofarkansas. org / contact. html
ADULT DAYCARE Helping Hands, Pulaski Heights United Methodist Church, 4823 Woodlawn Ave., Little Rock, (501 ) 664-3600, 9: 30 a. m.-2: 30 p. m. Tuesdays The Caring Place, First United Methodist Church, 101 Quapaw Ave., Hot Springs, (501 ) 623-2881, 9 a. m.-3 p. m. Monday-Thursday Arkansas Adult Daycare Association, Kaye Curtis, president, (870 ) 741-8007 National Adult Daycare Services Association, (877 ) 745-1440 www. nadsa. org AREA AGENCIES ON AGING The Division of Aging and Adult Services, Arkansas Department of Health and Human Services, (501 ) 682-2441 www. arkansas. gov / dhs / ag
ing / aaamap. html CareLink, the Central Arkansas Area Agency on Aging (Faulkner, Lonoke, Monroe, Prairie, Pulaski and Saline counties ), 706 W. Fourth St., North Little Rock, (501 ) 372-5300, (800 ) 482-6359 www. care-link. org Arkansas Area Agency on Aging of Northwest Arkansas (Baxter, Benton, Boone, Carroll, Madison, Marion, Newton, Searcy and Washington counties ), 1510 Rock Springs Road, Harrison, (870 ) 741-1144, (800 ) 432-9721, TDD: (870 ) 741-1346 www. aaanwar. org White River Area Agency on Aging (Cleburne, Fulton, Independence, Izard, Jackson, Sharp, Stone, Van Buren, White and Woodruff counties ), 3998 Harrison St., Batesville, (870 ) 612-3000, (800 ) 382-3205
www. wraaa. com East Arkansas Area Agency on Aging (Clay, Craighead, Crittenden, Cross, Greene, Lawrence, Lee, Mississippi, Phillips, Poinsett, Randolph and St. Francis counties ), 2005 E. Highland Drive, Jonesboro, (870 ) 972-5980, (800 ) 467-3278 www. e 4 aonline. com Area Agency on Aging of Southeast Arkansas (Arkansas, Ashley, Bradley, Chicot, Cleveland, Desha, Drew, Grant, Jefferson and Lincoln counties ), 709 E. Eighth St., Pine Bluff, (870 ) 543-6300, (800 ) 264-3260
www. aaasea. org Area Agency on Aging of West Central Arkansas (Clark, Conway, Garland, Hot Spring, Johnson, Montgomery, Perry, Pike, Pope and Yell counties ), 905 W. Grand Ave., Hot Springs, (501 ) 321-2811, (800 ) 467-2170 www. seniorspecialists. org Area Agency on Aging of Southwest Arkansas (Calhoun, Columbia, Dallas, Hempstead, Howard, Lafayette, Little River, Miller, Nevada, Ouachita, Sevier and Union counties ), 600 Columbia St., No. 11 E, Magnolia, (870 ) 234-7410, (800 ) 272-2127 www. agewithdignity. com Area Agency on Aging of Western Arkansas (Crawford, Franklin, Logan, Polk, Scott and Sebastian counties ), 524 Garrison Ave., Fort Smith, (479 ) 783-4500, (800 ) 320-6667
www. agingwest. org