November is Alzheimer's Disease Awareness Month. Last year I wrote a piece on being a caregiver for someone you love with Alzheimer's for a national magazine. Here's an excerpt of that article with six pieces of advice to help caregivers cope:
Plan sooner. "These days, people are being diagnosed earlier and earlier in the disease," says Peter S. Reed., Ph.D., senior director of programs for the Alzheimer's Association. "People in the early stages still retain a lot of abilities and have the capacity to participate in discussions about legal and financial issues and articulate their preferences to the caregiver." Disease-modifying drugs may also keep an Alzheimer's patient in the early stages longer - but that's no reason to put off difficult conversations about finances and end-of-life issues, or avoid putting in place the necessary paperwork. "First of all, I would have people execute a durable health care power of attorney that says who you would want to make health-care decisions for you," says Anna Dowd Treinkman, R.N., a certified gerontological nurse practitioner at the Rush Alzheimer's Disease Center in Chicago. (This document, and similar versions can go by other names - such as health care proxy, advanced health care directive, living will, and Five Wishes -- depending on the state you live in.) Also necessary is a durable power of attorney for the person's estate. Donna Schempp, L.C.S.W., program director of the Family Caregiver Alliance in San Francisco, recommends seeing an estate planning attorney. "Because if you do it wrong, you can make your life a lot harder. You need to have a plan in place for how the finances are going to be handled long before someone has serious symptoms.
Find support. Friends, family, neighbors, coworkers - all can be incredibly valuable in giving of their time and help. But don't forget about support groups specifically for caregivers of those with Alzheimer's. Lisa Gwyther, education director of the Bryan Alzheimer's Disease Research Center at Duke University Medical Center in Durham, North Carolina, suggests finding someone to whom you can vent your frustration, anger, and sadness - "someone you can be brutally honest with." Some caregivers get support in the form of a geriatric care manager (GCM), says Treinkman. These certified professionals can hire and help retain in-home health aides; monitor doctor visits, medications, and overall health; and help patients and their caregivers find resources. "They can be really beneficial in being the eyes and ears of long-distance caregivers - they can take some of that burden off family members," Schempp explains. Visit the Alzheimer's Association's website (www.alz.org) to find a support group near you; and to find a GCM, contact the National Association of Professional Geriatric Care Managers at www.caremanager.org or call (520) 881-8008.
Manage expectations. Perhaps the biggest challenge of caregiving, especially in Alzheimer's latter stages, is dealing with dramatic and often sudden changes in behavior - from angry outbursts and inappropriate sexual behavior to falling hygiene standards and paranoia. "The cardinal thing is not to argue with the person with Alzheimer's disease," Treinkman cautions. "Get into their world: If a person believes this isn't their house or somebody took their purse, rather than convince them of the facts of the matter, focus on their feelings." This approach is likely to result in far fewer of the upsetting exchanges that wear on caregiver and patient alike. Donna Schempp agrees: "The biggest fight is getting people to bathe. Part of it is learning not to be so fussy about how often they bathe."
Make peace with the unknown. "Alzheimer's is a progressive, degenerative disease - people change over time. There are different stages and the transition points become really challenging," says Peter Reed. Lisa Gwyther says caregivers are very often shocked at this aspect of the disease. "The most challenging part is that it is so unpredictable and it is also so intrusive on all aspects of one's life," she says. "All you can do is set up what's going to work for a while. The disease is changing." For the caregiver, that means their work, social life, and of course their relationship with the person with Alzheimer's, will change, too. The average lifespan of the disease from diagnosis to death is 9 years, says Treinkman, during which a patient may have extended periods of relative stability, only to transition abruptly to a new (and more difficult) stage. "Most of the time in life we can figure things out," says Schempp. "With Alzheimer's it's the opposite of what you'd ordinarily do, which is be reasonable, logical, make agreements. You can make an agreement with your mother, but she obviously doesn't remember, so people get frustrated."
Get help when it's time. [i]"You will ultimately reach a point where you're overwhelmed - you can no longer ensure safety, high hygiene practices, good nutrition, and that the person is in a socially engaging and stimulating environment," Reed says. That may mean hiring a home health aide, looking into adult daycare, or transitioning the person into a setting where more medical care can be offered, perhaps on a 24/7 basis. (Incontinence and chronic wandering outside the home are two reasons many caregivers seek professional care, or more of it.) When choosing a facility, says Reed, look for a place that offers person-centered care. "The experience of any person differs from person to person; the staff should understand the person's remaining abilities and their personal preferences and use that medical, physical, and social assessment to maximize quality of life." Ultimately, stresses Schempp, the decision to place a loved one in full-time care is different for everyone. "For some people, changing diapers is no big deal; for others it's not. It may be that, ‘when they no longer know me, I won't feel so guilty if I put my father, mother or spouse in a nursing home.' For some people it's when you can't manage their physical needs. Usually the decision is around the caregiver wearing out or not being able at some level to provide the care."
Take care of yourself. "Caregivers tend to be selfless; they often have high expectations of themselves and are not very forgiving of themselves," says Schempp. "They're working very hard caring for someone else and they get lost." But if you're feeling angry, isolated, exhausted, depressed, anxious, irritable, impatient or you're losing sleep, it's time to seek help. The cost to caregivers of Alzheimer's patients can be especially high: A MetLife Institute study found that these caregivers' health worsened 45% more often than that of others. Fortunately, there's no special formula for finding more balance; it simply means taking time for the activities, and the people, you love: "It's important that people have something - going to a church group, their bridge club, playing a round of golf, their book club - some social connection or outlet," urges Treinkman; this counters the social isolation so common among caregivers. "The more successful caregivers are people who have a sense of humor, are easygoing and have some patience," Treinkman concludes.
- Lorie Parch, Intent.com
Learn more about Alzheimer's Disease at Intent.com
