Local services available to help caregivers of people with Alzheimer's disease

Each year, about 15.5 million Americans provide 17.7 billion hours of unpaid care for a loved one with Alzheimer's disease, according to statistics from the Alzheimer's Association. Sixty percent of Alzheimer's caregivers rate their emotional stress as high, and about a third suffer from depression.

Caregivers are also likely to lose out on sleep, be physically exhausted, be isolated from friends and family and experience financial stress to the point where they must quit their job and lose health insurance benefits in order to care for a loved one.

"The cost of caring for someone with this disease is astonishing. It's emotionally and physically a burden to be giving that direct care," says Amanda Laumeyer, respite coordinator at the Alzheimer's Association -- St. Louis Chapter. "A person with this disease will eventually make it to the point where they'll need 24/7 care, and the cost is very high."

Carmen Hoffman holds up the card that shows "someone who builds things," as volunteer Emilie Wendel looks on, during a mental exercise for the Memory Matters group at Lutheran Family and Children's Services in Cape Girardeau. (Fred Lynch)

Fortunately for Marilyn Unterreiner, when her father had his first stroke four years ago, she was at a time and place in her life where she could make the move from Columbus, Ohio, to Perryville, Mo., to care for him. She's also had plenty of support from her siblings and cousins, much appreciated as her father eventually had three more strokes and developed dementia. Still, caring for her 98-year-old father, Orval Bellm, can be a struggle.

"You have to take breaks and you have to be patient," says Unterreiner. "Sometimes the hardest thing is that it's my dad and I want him to be like he used to be, and he's not. The roles are totally reversed." After Bellm's last stroke, a hospital social worker told Unterreiner about services available from the Alzheimer's Association, including the Respite Assistance Program, which provides $500 for family caregivers to arrange a respite break. For many, that means hiring temporary care so the primary caregiver can run errands, catch up on work, spend a weekend away, even take a nap in the other room. The funds can also be used for medical supplies or equipment.

"It gives the caregiver a chance to rest, and also gives them the chance to learn from other caregivers about their situation, about the disease, and know they have support while facing the disease," says Laumeyer. "It makes them a better caregiver when they're equipped with support and information to care for their loved ones, and most importantly, to know they're not alone."

Unterreiner can leave her father alone while she takes short trips to church or the grocery store, but she's been using her respite funds to hire a caregiver when she needs to be gone for longer periods of time.

"It's freeing to know that we can use this program," she says. "You definitely need to get out and do things for yourself. Sometimes when I would go out, I would get anxious thinking I needed to get back home. You have to make sure you get someone you feel comfortable with so you can go out and not worry about that -- just enjoy being out."

The Alzheimer's Association also operates a 24/7 hotline staffed by a live person, holds support groups throughout its coverage area, which includes Southeast Missouri, coordinates care consultations to determine what services will be of help, and organizes the annual Walk to End Alzheimer's. This year's Cape Girardeau walk will be Saturday, Sept. 13, at Cape County Park North.

In addition, Lutheran Family and Children's Services has begun a REACH (Resources for Enhancing Alzheimer's Caregiver Health) program providing care and respite to Alzheimer's caregivers. The program involves six home visits and three phone calls over a six-month period. Sessions cover relaxation, meditation and coping techniques; information on what to expect from a patient with Alzheimer's disease; an emphasis on health care for the caregiver; and support and encouragement.

"If they're not able to take care of themselves and maintain their physical, emotional and spiritual well-being, they're not going to be able to care for their loved one," says Carol Dippold, geriatric care manager and counselor at LFCS. "In some cases we see the person who's doing the caregiving become so debilitated that they can no longer care for their loved one, and someone else has to step in."

Emotionally, guilt is a common feeling among caregivers of Alzheimer's patients, says Dippold.

"They feel like they're not doing well enough, they're not meeting their loved one's needs adequately, they feel guilty that this happened to the loved one and not themselves, and guilty that the loved one is not able to live and do and meet the goals that at one time they aspired to," she says.

LFCS also holds meetings on Mondays and Thursdays for people with advanced and early memory loss, respectively. The four-hour sessions include lunch, exercise and other activities for attendees, while simultaneously allowing the caregivers a break.

"There is so much attention on the person with the disease and making sure they feel loved and cared for that the caregiver feels neglected and that no one is hearing their needs," says Dippold. "It's very important for caregivers to take care of themselves. The one receiving the care will mirror the caregiver's emotional state of mind. If the caregiver they depend on is not coping well, the person they're caring for will begin acting in the same manner."

For more information about services at LFCS, call 573-334-5866. For the Alzheimer's Association, call 800-272-3900 or visit www.alz.org/stl.