From Healthy Communities, Volume 4 2005
"Caregiving is tough work. It's important that families hear that they are doing a good job." - Dr. David Wilner.
Every day, thousands of Americans wake up, look in the mirror and find a different person looking back. Overnight, a spouse, parent, "child"...teacher, analyst, sales executive or retiree—anyone—can be transformed into a caregiver. It's a role that few anticipate or are prepared for, but one that changes lives forever.
Despite all that is being said and written about the breakdown of the family unit in our society, caregiving statistics tell a different story. In neighborhoods across America, 44.4 million people are caring for ailing adult family members.* In Massachusetts, 77% of those polled in a recent Fallon Community Health Plan survey** were caring for at least one elderly person.
Families are sending a clear message: We want to see our elderly loved ones remain independent and living in a home environment if at all possible—because we love them, because it is what they want, and because it is what we would wish for ourselves. But that desire is often difficult to fulfill. Many caregivers also are balancing the responsibilities of jobs, families and community commitments as well as personal pursuits. Paired with their loved one’s illness and frailty, among other factors, caregivers feel very overwhelmed, as noted in FCHP’s caregiver survey.
a caregiver’s story
"If you are going to be in the caregiving role for the long term...you need help. It's just as easy as that. This is an intense responsibility." - Claire Angers, caregiver
Caregiver Claire Angers proudly describes her mother as “a woman ahead of her time.” An independent person, she owned and operated her own business, and managed her life and family very well. “She was always a very classy, loving lady,” says Claire, who recently talked about her caregiving role in the home she shares with her parents, who have been married 68 years. Over the course of recent years, however, Claire’s mother had medical issues and suffered significant memory loss. She reached a stage where she needed a lot of support.
“My family and I feel very fortunate we found Summit ElderCareSM,” says Claire. Her mother has been a participant in the program for one year.
“The program is an alternative to nursing home placement. We found a place that shares our goal to keep Mom at home, and provides the help and support to do so. They help caregivers maintain a healthy balance in their own lives so they can continue to be supportive and nurturing for their loved one.”
Seeing the gap between what families wanted to do, but could not do alone, Fallon Community Health Plan set out 10 years ago to promote a different kind of health care program. It then sponsored Elder Service Plan, which changed its name this fall to
Summit ElderCare. Established as a Program of All-inclusive Care for the Elderly, or PACE, Summit ElderCare has a geriatric team that provides comprehensive care and services for frail elders and supports the role of their caregivers. It's the only program of its kind in Central Massachusetts and one of only 40 PACE programs nationwide.
Summit ElderCare supports caregivers directly through one-on-one consultations, 24-hour telephone access for emergencies, support services in the home, access to adult day health care, respite care and a caregiver support group.
“Our secondary focus is on the caregiver,” explains David Wilner, M.D., FACP, AGSF, who along with Glenn Randall, M.D., M.P.H., is co-medical director of the program. “Caregivers are our partners. They must be up to the task, or we can’t succeed. I’m amazed by their resourcefulness and the strength they find. Our team offers a lot of support, counseling, education resources and encouragement. Caregiving is tough work. It’s important that families hear that they are doing a good job.”
Not only does Summit ElderCare give Claire a break from her caregiver responsibilities, but also her mother enjoys it.
“Mother began going to the Adult Day Health Center twice a week, and now goes six hours daily, Monday through Friday,” Claire notes. “We call it her ‘club.’ As I go to my health club in the morning, I tell her she is going to her own club with her friends. She feels it’s a special place for her to go.
“And in fact it is special,” Claire agrees. “Everyone there knows my mother—more than just by her name. They know what her needs are and how best to interact with her. There is a climate of caring, commitment, respect and collaboration—for both the participant and the caregiver. The communication has been unbelievable.”
finding the balance
The challenges of caregiving are multidimensional, as well as very personal.
“If you are going to be in the caregiving role for the long term, as I plan to be, then you need help. It’s just as easy as that,” states Claire. “This is an intense responsibility.” Claire, a retired public school administrator, says that knowing her mother is well cared for during the daytime gives her the peace of mind and freedom to do all sorts of things—some necessary and some recreational.
“Getting together with people in my profession and remaining active in my field enriches me as a person,” Claire says with certainty. “Also, some of my friends are in similar caregiving roles with their parents. So there’s a lot of strength to be had by sharing experiences and seeing what wonderful ideas they have that are working.”
Additionally, for the Angerses, caregiving is an undisputed family affair, and having a strong extended family is of benefit to their caregiving arrangement.
“When I need help, one of my sisters is here and takes over,” Claire states. “Being here for my Mom and Dad is something we want to do, and we feel fortunate that we are able to do it.”
Claire admits that the child-parent role reversals are very difficult to experience and adjust to. “You can’t dwell on it,” she counsels, “but you can remember the wonderful, wonderful times. We’ll never forget those.”
The 10 grandchildren and 13 great-grandchildren in the family also contribute. “It’s amazing how multiple generations can spark some real loving memories. When she sees the babies, my mother’s eyes will brighten, and she’ll come out with things I haven’t heard her say in a long time. Her grandchildren treasure her being ‘with us.’”
The older great-grandchildren, too, interact with their great-grandmother as much as possible. “They are learning how important it is to be caring, concerned and respectful,” Claire smiles. “And the nurturing and bonding is beyond belief—it’s awesome!
“As a family, we are partially entrusting our loved one, at a very vulnerable time in her life, to someone else’s care,” Claire concludes. “We’re fortunate to have the Summit ElderCare professionals who have the skills, empathy, ability and concern to make a significant difference in Mom’s life and ours.”