TOLEDO, OH – The empty nest seemed on the horizon for Carolyn Kulawiak as her oldest daughter headed to college and her two younger daughters started high school.
But when her 85-year-old father died unexpectedly last year, Kulawiak found herself in another – and rapidly growing – demographic: the “sandwich generation caregiver,” meaning middle-aged adults who care for aging parents while still raising children. Kulawiak stepped into the role of primary caregiver for her mother, who was diagnosed with dementia after her husband’s death.
“Just like when you have your first child, there’s no manual for being a caregiver,” Kulawiak observed.
In Ohio, more than one in three dementia caregivers are in the sandwich generation, according to new figures from the Alzheimer’s Association. As students return back to school, the stress on those caregivers will increase as they juggle their kids’ schedules and their parents’ needs.
On Aug. 30, the Alzheimer’s Association is hosting a free virtual education program, “Sandwich Generation: Taking Care of Aging Parents while Raising Children.” It will include topics such as developing a plan of care, learning how to tap into community resources, and dealing with stress. The program begins at 6 p.m. To register, call 800.272.3900.
Those topics are urgent concerns for caregivers such as Jodi Audino, who is raising two young children while helping her parents after her father’s dementia diagnosis. “My biggest stress is juggling everything and prioritizing,” Audino said. “I’m making sure my kids get to school OK while also making sure my dad’s pills are filled.”
An estimated 15 percent of sandwich generation caregivers quit their jobs or retire early, according to Alzheimer’s Association statistics. “It’s time that employers recognize that this is becoming a major issue, or they risk losing good employees,” said Melissa Dever, program director for the Alzheimer’s Association. “They should help their employees develop a plan to care for their parents that will allow them to stay in the workplace.”
Making sacrifices has been an invaluable learning experience for her children, Audino said. “They know that whatever Papa Bear and Grammy need, I am there for them,” she said. “They are understanding the importance of making memories as a family.”
Finding time for self-care can prove all but impossible, Kulawiak said. “I have ignored things that I should take care of for myself. If I get 10 minutes to myself or if I get to do a face mask with my girls, that’s my time.”
Kulawiak moved her mother to a home a few miles from her own, and she coordinates around-the-clock care for her mother, managing the schedules of seven private-pay caregivers. “It’s like having another child, but a child with a house and employees,” Kulawiak said.
Both Kulawiak and Audino have joined a support group for adult children through the Alzheimer’s Association. “It’s such a relief to know you aren’t going through this alone,” Audino said. “We listen to each other and we vent, and we know we are there for each other.”
Kathy Misiuk hosts a monthly support group for adult children whose parents have dementia.
In addition to sharing resources, books, and videos, she said, “We give each other permission to hurt and to be angry. We share the comfort of knowing we are not alone.”
Even with such a strong support network, caregivers often feel overwhelmed. “You are constantly in a tug of war, worried about who is getting the short end,” Kulawiak said. “You feel stretched to the max and 24 hours in a day is not enough time to take care of everyone and everything. It is physically and emotionally exhausting, but also rewarding when you know that you are helping to make your loved one’s life the best that it can be.”
The Alzheimer’s Association offers these tips for Sandwich Generation caregivers:
Take care of yourself: Making sure you are healthy can help you to be a better caregiver to others.
Maintain good communication: Help your partner or spouse and your children understand the demands you are facing and enlist their help and support.
Seek support: Contact your local Alzheimer’s Association chapter and Council on Aging or the statewide Pro Seniors advocacy group. These organizations can connect you with adult day programs, in-home assistance, companions and meal delivery programs, among many other services.
Talk to your employer: Some companies offer flexible schedules or allow telecommuting. Discuss potential accommodations that can be made that will allow you to remain productive at work.
Make a plan while your loved one can still make decisions: Make an appointment with an elder care attorney and hold a frank discussion with your parents about their financial situation and their wishes for their care when their dementia progresses.
About Alzheimer’s Association®
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s®. Visit www.alz.org or call our 24/7 Helpline at 800.272.3900.