When the husbands of Medford residents Helen Wooten and Jean Moore were diagnosed with dementia in recent years, neither knew of one another, the role they would soon fill as caregivers, or the importance of support from family and friends as their lives took a drastic turn.
Both watched as their husbands began to lose touch with reality, forgot precious memories, and become increasingly dependent on their wives' 24-hour care. Helen would soon succumb to debilitating migraines, while Jean would find herself on medication for high blood pressure, often exhausted even after a full night's sleep.
A host of local and online resources offer information pertaining to caregiver stress and provide services or referrals to in-home caregivers, adult daycare, "meals on wheels" and support groups.
The Alzheimer's Association is a clearinghouse of medical information and online support for families dealing with dementia related illnesses. www.alz.org
Food and Friends, facilitated by the Rogue Valley Council of Governments, provides a hot daily meal to seniors age 60 and older 734-9505
Medford Senior Services provides resources and referrals for senior services ranging from housing assistance and meals to support groups. 776-6222
RSVP Respite Program provides respite to in-home, unpaid caregivers of seniors age 60 or older, for two to three hours. 858-7780
Lifespan Respite Network of Jackson County provides in-home caregiver referrals, provides two drop-off sites and facilitates a host of support programs for unpaid caregivers. 821-8764
"This has been the hardest thing I've ever done in my life," Helen says. "I was caregiver for my mother, who was mentally alert until the day she died. But this disease of dementia is so difficult and so cruel. My husband was an aerospace engineer and he doesn't even remember the name of the company he worked for, for 25 years."
While compelling, Jean and Helen's stories are far from unusual. Some 4.5 million people worldwide are diagnosed with Alzheimer's, many of whom are cared for by spouses or adult children.
"These are the folks who are lost in the statistics when you talk about Alzheimer's," says Pat Gillette, a Medford physician and board member of the state Alzheimer's association.
"The caregivers may not have the diagnosis, but they're suffering from the disease. Over 50 percent of caregivers suffer from major depressive symptoms, not necessarily depression, and have a higher instance of medical issues, themselves," Gillette says.
"[Experts have] found if patients or their caregiver took part in a daycare or respite program, in mild Alzheimer's cases, six years later they were all still alive," says Gillette. "If they hadn't, either the caregiver, patient or both had died."
Caregiver stress, riddled with symptoms such as denial, anger, withdrawal, exhaustion and irritability, is becoming so predominant in cases of live-in caregivers that the American Academy of Family Physicians and the National Center on Caregiving have called for every caregiver to be screened for depression and stress.
Left untreated, chronic stress of caring for someone can lead to headaches, high blood pressure, diabetes and a compromised immune system.
"Caregiver stress is very high, and unless they take a break and take care of themselves, they wind up sick or ill themselves. Then they have no one to take care of the person they're caring for," says Pam Swisher of Lifespan Respite Network of Jackson County.
First and foremost, knowing what resources are available in the community can help tremendously, says Swisher.
Locally, she coordinates two daycare drop-off sites to provide respite for caregivers. Referrals are offered for homebound patients.
Outside the home, or via phone networks, support groups abound. To find one specific to the illness suffered by a loved one, whether cancer, Alzheimer's or special needs, search online or in the yellow pages to look up organizations providing information on local resources such as support groups. Web support groups are great, too.
On a basic level, Gillette and Swisher encourage caregivers to take care of basic needs. Even when trips outside the home are few and far between, take a hot shower, sneak in a workout, read a good book and eat properly.
While their situations are unlikely to improve — their husbands will one day need to be placed in a facility — Helen and Jean try to stay optimistic, appreciating opportunities to compare "battle wounds."
To ease stress, Helen's joined an exercise group, walks regularly and tries to eat right. Jean tries for the same, and often stays at the daycare facility simply to enjoy her husband interacting, even laughing, with others.
Gillette's most valuable advice to families providing at home care for a loved one is to get help before it's too late and get help regularly.
"What I recommend to caregivers is to at least get a half day per week," Gillette says.
"The important thing to remember is that if the caregiver gets sick, who's going to take care of the person they're taking care of?"