SHELBY TOWNSHIP — Jill Gafner has a simple message for caregivers who spend most of their time helping loved ones with disabilities or special needs — it’s OK to be a little selfish.
Gafner, who spent more than a decade caring for her husband, Bob, after he was diagnosed with lung and brain cancer, has dedicated her professional life to helping those who help others learn to help themselves.
“I won’t ask you about your patient, their medication schedule or anything like that,” Gafner said of her presentation, “Caregiving Survival.” “This hour is about you.”
Gafner said that the dynamics and challenges facing caregivers can vary and be misunderstood, but if they are not addressed, they can be debilitating or worse.
“Sixty-five million caregivers are at risk of dying themselves, because the stress is so intense,” Gafner said. “Caregivers no longer go to the doctor for themselves. They don’t exercise, and they become socially paralyzed”
That is why she said events like the Oct. 13 Solutions for Family Caregiver Expo, hosted by the Area Agency on Aging 1-B, or AAA 1-B, from 9 a.m. to 2 p.m. at the Sterling Inn Banquet & Conference Center at 34911 Van Dyke Ave. in Sterling Heights, is so important.
Gafner, of Shelby Township, is one of the expo’s 12 speakers and presenters on topics ranging from vehicle safety to legal tips to exploring Medicare and Medicaid programs.
“We’ve worked with Jill for a couple of shows, and she’s amazing,” AAA 1-B communications manager Sallie Justice said. “She has a very unique understanding of the issues caregivers face, and the people at the shows always really connect with her and her message.”
And to further the focus on the caregivers, the AAA 1-B offers complimentary respite care sponsored by Hospice of Michigan and Sunrise Senior Living, so caregivers can relax and know their patients are being cared for.
Gafner said she sees plenty of people with stories and problems similar to those faced by her family as they struggled with watching a loved one suffer through years of debilitating disease.
“You still have a full-time job, and you still have bills to pay, and you still have a family,” Gafner said. “None of that goes away when you’re a caregiver. You have all of that responsibility, and now you have to care for someone else, too.
“You go to bed and pray to God, and ask that somehow you’ll have more patience the next day and you’ll be a little kinder,” Gafner added. “And you wake up, and you tell yourself, ‘It’s going to be different today. Today I’ll have more patience.’ Then, 20 minutes later, you’re at your wit’s end.”
Gafner’s trials coping with her husband’s illnesses were seemingly compounded at every turn, as he was the primary earner for the family prior to his illness, while she was still in school.
“Bob was diagnosed with double lung cancer and brain cancer at 32,” Gafner said. “We were still raising our young children, who were 5 and 6 at the time.
“And, even though doctors didn’t give him very much time to live, Bob kept living. There was no thought of long-term survival, but he kept living,” Gafner added, noting her husband developed severe dementia because of the brain cancer. “There were days where I would think, ‘I could live or die,’ and dying sounded so much easier.”
And, amazingly, those challenges only grew two years into her husband’s illness.
“I thought I had lymphoma,” Gafner said. “I had cancer in my face all the time, so that’s all I could see. I read the symptoms for lymphoma — being tired and achy — and I was sure I had it.
“It turned out I was pregnant with our youngest son, who is now graduating from Utica (High).”
Gafner said challenges like caring for her husband, herself and her young family helped make her strong and showed her the needs that are out there for others facing similar challenges.
“It’s only because I went to the bottom that I found this out,” Gafner said. “Certainly, at 31 years old, there wasn’t anyone I knew going through this, so if I was going to get through it, I had to create it.”
“That’s why I went through it, because it would have killed so many others,” Gafner added. “Now I have the experience, and I’m able to speak to so many people and able to get the word out on caregiver survival.”
Along with watching a loved one cope with illness, Gafner said many of the problems that caregivers face stem from feelings of isolation accompanied by guilt and frustration.
“It doesn’t matter where you look, your life is falling apart,” Gafner said of the emotions caregivers deal with. “And we feel guilty, because our job is to take care of a person, but we don’t have the skills to cure that person.”
“We never get a past tense or a sense of accomplishment,” Gafner said. “Even when our patient is not our patient anymore, the caregiver will carry the burden for three to four years.”
Because there is that lack of closure, Gafner said she learned to cope with her problems and even go as far as to learn to laugh at them.
“I remember we went on a vacation to Disney,” Gafner recalled of a trip she and her family took with her husband while he was in the early stages of dementia.
“We went on the It’s a Small World ride, and you know how you have to hurry off at the end while the next group hurries on? Well, Bill fell asleep and didn’t get off the ride.
“I remember I was so mad when it happened, but now we look back at it, and it’s one of the funniest things I can remember.”
Laughing is part of the general theme of Gafner’s message to caregivers — that it’s not just OK to enjoy their life, but it is mandatory.
“You have the right to live healthy, maintain friendships and stay socially active,” Gafner said. “Take care of you, because without you, your patient doesn’t have a chance.”
The AAA 1-B Solutions for Family Caregiver Expo is free to attend. For more information, visit www.michigancaregiverexpo.com or call (800) 852-7795.