A driver came to the house and picked Robert up five days a week at 7:30 and brought him home at around 4:00 P.M. The couple received a grant from United Way to fund the service they received from the Respite Center, which cost around $200 per week. The Respite Center had well-thought-out activities designed for seniors with dementia and Alzheimer's, and those activities "helped slow down his Alzheimer's" (Claunch). Those activities include arts and crafts, chair aerobics, games, socializing, breakfast, lunch and a snack, Claunch explains. On many days a special visitor or group comes to entertain the seniors; among those groups are the Gulf Coast Women's Club, the Garden Club, PAWS Ministry, gospel groups, line dancers, pianists and sing-along singers.
When an Alzheimer's patient is stimulated (by being entertained, walking, or engaging in a game of some kind that challenges the mind but does in minimally) the nerve cells are "encouraged…to find alternative pathways around calcification, and hopefully slow down the disease's progression" (Claunch). Places like the Respite Center are clearly a huge positive boost for families whose loved one has been diagnosed with Alzheimer's. Respite Center director Gene Warner told the News Herald that "by 2020 there will be 5 million Americans suffering from Alzheimer's." And he added, "Even Nancy Reagan, with her financial and societal advantages, couldn't stop the slow progression of losing her husband."
Moreover, since there is no cure for Alzheimer's it portends the need for a lot of family caregiving over the next few years since the "Baby Boomers, the country's largest generation, is nearing the age of Alzheimer's and dementia onset -- around age 60," said Warner (Claunch). There is simply no doubt that the need for family caregiving will be on the rise as the Baby Boomers get up into their 70s and 80s.
Difficult Effects on Families Who Become Caregivers
Rickey Alexander is a single 62-year-old woman whose mother cared for her aging, ailing grandmother years ago, and now Alexander's own mother needs to be cared for and Rickey felt responsible to do the same, keeping the generational caregiving consistent. Her mother is 95 and has the beginning signs of dementia. She also has osteoarthritis and her recent hip replacement causes her pain, as does her arthritic knee. Rickey Alexander's mother lived in her own home until recently until "…it became apparent that her mother was too fragile to be alone" (Gardner, 2009). "Her whole thing was, she just always had a fear of nursing homes," Alexander said. "She always said 'I'd rather be dead if I had to go to a nursing home'" (Gardner). And so, the mother moved in with the daughter.
Ricky Alexander is a charter member of the "sandwich generation" according to Gardner's article in the Concord Independent Tribune. She has raised two sons, who are now out on their own, so this "should be her time to enjoy life" however, the responsibility of caring for her 95-year-old mother "…has fallen to her" (Gardner). This situation is not at all unique, according to the National Alliance for Caregiving and the AARP. The data these two organizations have produced shows that the typical caregiver is an employed woman, 46 years of age, with "some college." Female caregivers provide "more hours of care and provide a higher level of care than male caregivers," Gardner writes.
The study that Gardner references (by the National Alliance for Caregiving and the AARP) also found that: a) the average length of caregiving is 4.3 years; b) 62% of caregivers are married or living with a partner and 74% have worked and have managed caregiving duties at the same time; c) the majority of caregivers (89%) are helping persons related to them; d) eighty percent of care recipients are 50 years old or older; e) around twenty-five percent of caregivers report that the person they provide care for has Alzheimer's, dementia or "other mental confusion"; f) the study reflects that "what caregivers lack the most" is not compassion or skill, but "time for themselves"; caregivers also report that they "struggle" to manage their own "emotional and physical stress, as well as balancing work and family responsibilities"; g) one in five caregivers who participated in the study indicate "…they need help talking with doctors" and other healthcare professionals -- and they also need help "making end-of-life decisions" for their loved ones under their care; and h) three out of ever ten participants in the study say they need help "…keeping the person they care for safe, and finding easy activities to do with their loved one" (Gardner).
As for Rickey Alexander's mother, she still is able to get into the wheelchair by herself but there are times "when she doesn't recognize" her daughter or her daughter's companion -- but "she always knows the dog, Beau" (Gardner). Given that her mother sometimes exhibits a "combative nature" when it is time for her bath, Alexander is very grateful for the benefit she is eligible for from the departments of Aging and Social Services, which amounts to four hours a week (for bathing purposes). Still, Alexander finds herself wishing that she had not made the decision to bring her mom into the house. "I'm 62 and I don't have a life," Alexander said, adding that she does not expect her own children to care for her in the same way she is caring for her mother.
Resources for Family Caregivers -- You Don't Have to Go It Alone
An article in the Grayson County News Gazette in Leitchfield, Kentucky offers a wealth of online resources for those families who may become (or already are) caregivers for their elder loved ones. Jim Miller, the author of this article, says there are approximately 52 million Americans today who serve as caregivers. He shares what he says are free Internet sites that are "particularly helpful" (Miller, 2009). Assist Guide Information Services (www.agis.com) offers home care help, daily living aids, "long-term care solutions, support services, legal and financial help and more," Miller writes.
The Assist Guide Information Services is a collaborative effort between AGIS and the National Family Caregivers Association. "Caregiving demands often intensify over time," the www.agis.com explains, and so the wise thing to do is to build a "caregiving team" (friends, family, and neighbors). But well before the loved one has moved into a physical or psychological position that requires assistance, the caregiver (or future caregiver) should talk to that person about his or her wished for future treatment and care, the AGIS site recommends.
Next, when it becomes clear that caregiving is going to be required, and once that team is assembled the next step is to "learn how to handle the intense emotions caregiving" brings to the table. Next, the caregiver should locate and gather all of that loved one's financial records, legal documents (powers of attorney) and other materials and keep those records in one place, perhaps in one folder. After that, the caregiver should "familiarize yourself with local services like "home care providers, geriatric care managers, adult day care programs" and other listings, all of which are provided by www.agis.com. A list of emergency contacts (services, doctors, neighbors, friends, and family) should be printed out and kept in the home and at the caregiver's workplace as well.
The AGIS site recommends the obvious, but important matters: a) "stay positive by actively seeking meaning in your struggles" and don't attempt to "disguise or deny negative feelings"; b) maintain close communication with other caregivers or friends in order to keep strong emotions from becoming "unmanageable"; c) since caregivers are "prone to depression" one should see a doctor in the event that feelings interfere with your work or everyday life.
If a caregiver should become isolated, it is critical then to "reach out for emotional support" by getting in touch with a "caregiving buddy" or a "caregiver's support group" (www.agis.com). The AGIS site suggests keeping a journal to help keep things in perspective. And if things become burdensome and out of control, therapy or counseling "can be a smart investment." The kind of depression that can result from the burden of serious caregiving is worse than "ordinary sadness" and if left "unchecked it can leave you unable to care for your loved one or yourself" (AGIS). A good phrase to remember is this: "You may not be able to choose what happens to you and your family, but you can choose how you respond," the AGIS site explains.
Other online resources include: a) www.caring.com ("Tons of practical information, articles…and links"); b) The Family Caregiver Alliance has a "broad range of services in all 50 states (www.caregiver.org); c) AARP (www.aarp.org) offers a "Care Giving Tool Kit; and d) Strength for Caring is Johnson & Johnson site that offers tips on fitness and nutrition for caregivers (www.strengthforcaring.com).
Assist Guide Information Services. (2009). Caregiving. Retrieved November 10, 2009,
Claunch, Shannon. (2009). Council on Aging: Respite Center Cares for Community.