The life of a caregiver for a patient with any disease can be difficult. But for the Alzheimer's caregiver, the pain is often magnified by witnessing their loved one slowly disappear before their eyes.
Patients not only forget that their caregiver is their partner or their child, they also take on personalities and behaviors that are polar opposite of the life they had lived for decades.
In addition to having to watch constantly to make sure loved ones do not leave the stove on or wander out into the street, caregivers may find themselves yelled at, spit on and physically attacked by their spouse or parent. By the later stages of the disease, Alzheimer's caregivers seeking to keep their loved one at home must provide round-the-clock care, helping the patient perform all daily living functions.
"When somebody has cancer or some other illness, at least the family member can say to their loved one, 'I have to run out to the drugstore, I have to run out to the supermarket, I'll be back in an hour, don't worry.'" said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Hillside Geriatric Center in Glen Oaks. "You can't do that with somebody with dementia. You can't leave them."
Caregivers also face constant battles -with government and health care agencies who are determining care and financing, with family members who question the caregiver's decisions and with themselves. Caregivers often try to do it all, resisting reaching out for help until situations hit a crisis point, experts said.
"One of the things I like to ask caregivers is what's their sanity worth?" Vogel said. "Nobody can do this 24/7. Nobody. Everyone needs help."
And not everyone is cut out to be a caregiver, said Teepa Snow, a dementia care specialist and trainer who travels the country giving presentations to both caregivers and professionals. There also might be a relationship history that makes caregiving difficult.
"I might have not been the easiest person to live with before," Snow said. "We are all about saying, 'Well, you're caring for your loved one, great.' And sometimes it is and sometimes there's mixed feelings. You know, it wasn't an easy childhood, it wasn't a good relationship."
Long-distance caregiving brings its own set of issues, including guilt at not being closer to a parent or loved one who needs care. "There's so much to learn with this," said Beth Signore of the Jewish Association for Services for the Aged in Smithtown. "And all of that stress, that anxiety leads to guilt, which leads to more stress. It's a vicious cycle for the caregiver."
John Rauh, 41 of Yaphank, takes care of his mother, Marguerite, 83, at home. He also helped care for his father John, 84, who also had Alzheimer's, until his death in a nursing home in January. Rauh calls caregiving, the "land of lowered expectations."
"When you get an expectation that you maybe will get a couple of hours off, that a friend, a neighbor or someone can take this person off your hands so you can catch a breath and try to feel like a normal person, for just a little while . . . yeah, that's the land of lowered expectations," Rauh said.
This strain can often lead to resentment and tension between caregiver and patient, experts said. "I say, well, tell me what you like about your mom," Snow said. "And for many people there's a pause and they go, 'Hmmm, that's a hard one. Well, I love her. I made this commitment and I'm gonna follow through on it' and I say, that's not what I asked. Because the research shows that if there's not a positive connection . . . the risk of abuse or neglect or distress is incredibly high for these folks."
The stress of caregiving leads many to neglect their own emotional and physical health. Experts estimate that more than half of caregivers suffer from depression and many die before their patient.
"At some point in this disease process I have to turn my attention from the diagnosed guys to the caregivers," Vogel said. "I've scraped far more caregivers up off bathroom floors on a regular basis from the stress of caring for their loved ones than I do their diagnosed partners."
Vogel, who leads several caregiver support groups, said these groups provide an opportunity for people to let it all out, to share their stories with others who walk in their shoes.
"We don't necessarily come up with answers, just understanding and sympathy and empathy and compassion," Vogel said. "So that they can go home maybe a little bit renewed and ready to do battle the next day knowing that they're not alone, there are others out there doing the same thing."
Maxine Atkins, 67, of Melville attends a support group at the Long Island Alzheimer's Foundation in Port Washington. "When I meet my friends from LIAF, I don't have to explain how I'm feeling," she said. "We can look at each other and we know what kind of a day it's been. And we can laugh, we can laugh about it. Sometimes."
Some have trouble finding a support group that meets their needs. A caregiver who is looking after a spouse might not be able to relate to those taking care of a parent. Similarly, those families with early or young-onset Alzheimer's may have difficulty finding those in similar situations.
Pat Moffett, 62, of Great Neck could not find a support group for young-onset caregivers after his wife Carmen, 66, was diagnosed and he found his own health deteriorating. Now, working with the Sid Jacobson Jewish Community Center in East Hills, Moffett has started a monthly dinner for young-onset caregivers. "They're getting a little relaxation, they're getting a little information," he said. "We get them back kind of in control of themselves again."