Gretchen Strauss’s father “didn’t draw one pleasant breath” in the end. He refused care and grew more aggressive as his dementia and bone cancer reached their final stages, even being restrained so he wouldn’t rip out an intravenous tube that reached from a vein in his arm to a chamber in his heart.

When he fell unconscious and later died of bone cancer last December, Strauss said she felt more relief than sorrow.

“Relief that he was released from a body and mind that were in conflict with his spirit,” Strauss said. “Relief that he wasn’t going to live 10 more years, and I wasn’t going to spend the rest of my retirement taking care of him.”

Strauss, who moved to Encinitas last year,  put her life on hold to take care of her father as his Alzheimer’s disease progressed. For family and professional caregivers alike, patient needs often trump personal ones. Studies show that family-caregiver stress can cause physical and mental ailments while the rigors of professional caregiving result in high employee turnover rates in the elder-care industry.

Demands of the Job

Caregivers are often asked whether the patient remembers them, but the challenges far exceed memory loss. According to the Alzheimer’s Association, caring for a dementia patient can include assistance in bathing, eating, using the bathroom and nearly every other aspect of day-to-day life. Family caregivers must negotiate Medicare and finances, and make medical decisions when the patient can no longer communicate his or her needs.

“It’s like never being able to toilet train your 2-year-old,” Strauss said. “And the burden of 24 - seven is always there.”

Dementia patients require three times more care than other assisted living patients, according to Charles Drebing and other researchers from the Boston University Alzheimer‘s Disease Center. That care often comes from family members – one in four family caregivers provide 40 or more hours of care a week, according to the Alzheimer’s Association. The majority of them also work another job and report losing touch with family and friends.

Their task is made even more challenging when loved ones become combative. They are often verbally and physically aggressive, and refuse to cooperate with their caregivers.

When North County resident Rosemary Kiely placed her husband of three years in an Alzheimer’s care facility after he began hitting her and refusing medication, she said she hadn’t been able to get him to bathe or shave for four weeks.

“They’re very independent,” Kiely said. “Even today he doesn’t know there’s anything wrong with him. He thinks he’s fine.”

Burnout and Illness Common

Giving so much of yourself while enduring such behavioral changes, often on top of grief from the diagnosis, can lead to caregiver burnout. Alex Harmell, a researcher in the UCSD School of Medicine, said caregivers are more at risk for cardiovascular disease. Many are also diagnosed with clinical depression.

When Kiely placed her husband in Silverado Senior Living last year, she came down with shingles, temporarily lost the ability to speak and spent five days in the hospital. She said all of her test results pointed to stress as the cause.

“My family kept telling me: ‘You have to put him in a home,’ and I said, ‘I’ll never do that.’ But I didn’t realize what it was doing to me,” Kiely said. “His doctor told me to put him in. It was like I needed permission to do it because you think you can take care of them, you think you can do it all.”

Isabelle Strubhar, who has cared professionally for family members and friends with Alzheimer’s for 13 years, has decided to retire from the job at the end of this month. She said she feels sad and guilty but knows she needs to take care of herself.

“It’s time. I know that if I don’t do it, I’m not going to have quality years left,” Strubhar said, “There are so many things that I’ve always wanted to do.”

High Turnover

According to Boston University researcher Drebing, stressors in professional caregivers parallel those in family caregivers. He said the turnover rate for long term care employees can reach 69 percent and 200 percent for nursing assistants, who are most involved in day-to-day care.

Hired caregivers who don’t stick around usually leave within a few months, according to Erica Bengs, who moved up from a caregiver to licensed vocational nurse at Silverado’s Senior Living in Encinitas, before deciding to take an administrative position with Silverado’s hospice last year.

Bengs was a caregiver while in nursing school and said she was “terrified” because she didn’t have experience caring for dementia patients, which is often the case with hired caregivers. They only need a certified nurse assistant license, not a degree. Bengs said irregular hours and low pay are also contributing factors to employee turnover; caregivers make about ten dollars an hour.

The Alzheimer’s Association has called for more benefits for all caregivers, including higher pay for professionals. The American Association of Homes and Services for the Aging has launched the New Leaders Initiative aimed at providing fellowships for graduate work in elderly care. Some groups say family caregivers should receive Medicare benefits to cover training expenses and time spent consulting with physicians.

The Value of Support Groups

The Alzheimer’s Association has also called for more public funding for family support services. Many facilities and organizations offer support groups to help family members cope, but surveys show only 11 percent of caregivers utilize them. Male caregivers are more likely to experience burnout but are less likely to seek support, according to a 2002 study published in the Journal of Health and Human Services.

Kiely said her support group through the George C. Glenner Alzheimer’s Family Center saved her life, a sentiment echoed by other group members.

Though the recent death of Strauss’s father has provided relief and closure, she still visits her “saviors” in the group as she prepares to sell her father‘s home and return to her previous life.

“It takes a pretty special personality (to care for someone with Alzheimer’s), and an argumentative, single woman is not that person,” she said referring to herself.

But as the population of people with Alzheimer’s grows, more and more people like Strauss will find themselves adapting to the role of caregiver. Greater reliance on support groups and better recruitment and training of professional caregivers is a necessity because, as many caregivers say, it takes a village to care for dementia patients.

“You think you’re a super person and can handle it all,” Kiely said. “But you just can’t.”

###