by Barbara Smith
If your doctor’s screening reveals that your loved one’s memory-loss symptoms are more than the cognitive decline expected with normal aging, help is available. You’re going to need that help. Memory loss will disrupt every aspect of your daily life. It’s a long haul: the average lifespan from diagnosis to death is six years, and there is as yet no cure and no slowing of the disease’s relentless progression. It’s crucial that caregivers in the family protect their own mental and physical health, because the able-memoried need to stay strong and competent to manage the dementia patient’s care.
I know. My mother, a retired high-school physics teacher, the smartest woman I’ve ever known, hid her decline from me as long as she could. When she said she was planning to wear her casserole top with a dinner suit to the symphony, she caught her own word substitution and played it like a ditzy dame. She was terrified but she was wily, and I fought to believe her fiction that everything was fine. But the day I dropped in unexpectedly and she poured my tea into the sugar bowl and handed me a tarnished salad fork was the day I started an eight-year journey as a caregiver, the hardest job I ever tackled. It was heart-breaking, it was infuriating, I was so exhausted I sometimes hallucinated, and I made terrible mistakes. But Aiken, because Aiken’s that kind of community, helped me and I survived.
This month Bella covers local resources for dementia patients who are able to live in their own homes. In May, we’ll explore residential treatment options.
Karen Poteat of Aiken Active Seniors refers to her business as “a club for seniors who have limitations on their opportunities to socialize.” Aiken Active Seniors enrolls members of two groups: seniors who are relatively healthy but socially isolated, and families caring for loved ones with dementia. Every weekday from 9 to 5, Karen and her staff engage her clients – she does not call them patients – in productive activities, while keeping a watchful eye out for their safety. The day’s events are planned to develop and retain mental, emotional, and physical well-being. There’s a walking track, lunch and an afternoon snack are served in a club-like atmosphere, they play games, and there are opportunities for crafts and service projects.
Karen’s training is in geriatric nursing, but this is not a medical facility. Some of her clients view this as their job and some view it as a club, but nobody mistakes it for babysitting. Fees are not covered by Medicare or Medicaid, but some long-term care insurance plans reimburse for this service.
Karen says her program is suitable for proactive families, those who realize that the disease-driven decline is inevitable, but take the attitude that “If this is going to happen, it will happen on my terms.” While the client is at “the club,” the caregiver gets a break, can let his guard down, and can concentrate on her job or household. Families can choose half-days or full days, all week long or a few days a week.
In-home care is an option for families that prefer this arrangement or where the dementia patient is too frail to leave the house. In-home care services are offered by a number of agencies in the area that are licensed by the South Carolina Department of Health and Environmental Control.
Linda Lucas, the Community Relations Director for Daybreak Adult Services, says she puts her head on the pillow every night knowing that she’s made a difference for Aiken families. Linda began her career as a Registered Radiologic Technologist, and has worked in hospitals and doctors’ offices from Houston to Aiken. She also worked in budgeting and public relations at SRS, retiring to become a caregiver for her own family members. That’s where she found her passion.
Mark Barlow, the owner of Home Instead Senior Care, also left a long career at SRS to follow his calling for assisting seniors and their families in the CSRA. It is a calling that goes back to his childhood when he helped his mother care for an elderly aunt with dementia in his home and continues today with assisting his own family members. He will tell you that with Home Instead Senior Care, “It’s personal to us.”
Agencies like Daybreak and Home Instead work with families to develop care regimens that reassure the patient, keep a calm atmosphere in the home, and protect the patient’s dignity, privacy, security and safety. In-home care services are tailored to each individual’s needs and can include companionship; assistance with bathing, toileting and dressing; meal preparation, housekeeping, and laundry; errands and shopping; and sitting with a patient at home, in the hospital, and in assisted-living or nursing home settings. Agency staff trains caregivers, case-manages their assignments, and serves as a sounding board and advisor for families.
Financial Help and Alzheimer’s 101
For those families that are not financially able to pay for in-home care services, there are free resources available to family caregivers. For example, Home Instead Senior Care offers free online resources, including articles, blogs and training videos, at www.caregiverstress.com. Home Instead also offers grants to provide free services to families caring for a loved one with Alzheimer’s. Applications for the respite services grant are accepted online at www.helpforalzheimersfamilies.com.
Linda Lucas and Liz Neal, the administrator at The Hills of Cumberland Village, have developed a training program for families and enthusiastically take it on the road as Alzheimer’s 101. They liken Alzheimer’s to “invasion of the body snatchers” – the early-onset patient looks the same but is absolutely not the same. The disruption is difficult and unnerving. Suddenly your SRS-retiree parent doesn’t remember the significance of traffic lights, your accountant spouse can’t balance the checkbook, your gourmet-cook sibling is unsafe in the kitchen—and you must attend to this loved person and carry on with your life. Linda and Liz give you permission to laugh, tools to cope, and the reassurance that you will get through this. [Their Alzheimer’s 101 programs are listed in the Bella Buzz/Community Calendar in each issue. Scheduled for the second Tuesday every month, the April meeting is April 12 at Cumberland Village at 11 a.m. Meetings are free and open to the public.]
This resource isn’t in Aiken, but it’s available in the wee hours and it will show you the resilience of the human spirit. Elizabeth Grace Wolf and her husband (I’m nominating him for sainthood) moved back to her childhood home the year both of her parents were diagnosed with Alzheimer’s. The oh-my-gosh moment? Her parents called her in March and sang Happy Birthday, but Elizabeth was born in May. They told each other it was just for a couple of months, just to get things organized, but now they’re in their fifth year of interrupted sleep in her parent’s basement. Elizabeth has part-time in-home care for her mother and her dad goes to a day program every morning.
When you’ve reached the end of your fraying rope, log on at upsidedowndaughter.com and read Elizabeth’s vignettes, especially the one entitled “They never told me she would forget how to sleep.” Your English teacher was right: Sometimes an honest, well-written essay will get you through the night.
Barbara Smith is a technical writer who lives in Aiken and Mooresville, NC.