Determined to care for her daughter at home, Kelly found support with Caregiver Homes
"I'll figure out a way"
Kelly combs through her daughter’s hair with her fingers before she’s told to stop. Kelly smiles. It’s another reminder that, at 22-years-old, Arielle is now a young woman—an age of many transitions for all young adults, but particularly for a young woman who is blind and has Cerebral Palsy and Epilepsy. All the programs that had supported her throughout her life came to an end when she graduated from school. At a time of uncertainty, Kelly found Caregiver Homes, a resource that provides support, training and pay to people caring for loved ones at home.
“I luckily came across this program in 2009 through another parent who has a child with autism,” Kelly says. “She knew the kind of work we go through, but we do it because these are our children. These are our loved ones. I was open to any kind of help, and Caregiver Homes has been a tremendous help in my life.”
My one-pound girl
Kelly explains she has been navigating this journey with Arielle since her daughter was born, weighing just one pound. Arielle became blind soon after leaving the hospital. Kelly and her husband divorced when Arielle was four years old, and for a while Kelly found local babysitters and services to care for her daughter as she balanced home life with work as a travel consultant. Some tasks, like putting ointment in Arielle’s eyes, proved to be too much responsibility for Kelly to feel comfortable handing over. Instead, she chose to scale her work back to make sure she was able to take care of Arielle. Her daughter gained valuable experience at the Perkins School for the Blind, but she graduated and would have had to pay to continue the program. Arielle was in the Boston Public School system, which provided specialized teachers for speech and mobility, but Kelly knew their services wouldn’t last forever either.
Arielle’s seizures started in high school. As her daughter grew up, outside services—and even friends—began encouraging Kelly to look into whether Arielle should get her care in a facility.
“I was depressed these were the options that kept coming to me,” she says. “It’s a decision you have to make: either you want your loved one to be in the care of other people or you just take it on yourself. I think a lot of families make that decision with their senior parents or their children who have special needs, and it’s a very tense decision. You’re torn between I want the best for my loved one, and do I have the means to do this?”
Kelly explains that the weight of all these choices took its toll.
“It was stressful for me,” Kelly says. “It was a tough time. My doctor told me my blood pressure was skyrocketing. I was concerned about my health.”
Despite the challenges, Kelly stayed determined and positive. “They said I wouldn’t be able to do it. I told them I’ll figure out a way. Caregiver Homes was a godsend.”
Finding the happy balance
“I knew I made the right decision with Caregiver Homes pretty much immediately,” Kelly says. “The people were sincere and said, ‘We’re here to help you.’ It wasn’t what I was used to with other services. I’m in my own home, my daily life, but I’ve got support now.”
Kelly was surprised to see how the change improved her health.
“My blood pressure is down now,” she says. “My doctor thinks I’m going to be able to get off my medicine. ‘What’s changed?’ My doctor said last year. And I said, ‘I feel like I’m getting support.’ I’m healthier which is important because she then gets value out of me,” she says, looking at her daughter. “I feel like my life is certainly improving.”
Kelly feels she is able to provide her daughter with increased safety and security because of the help she receives from Caregiver Homes. She has a team consisting of a nurse and care manager that she can turn to for advice.
“Safety is the number one thing,” Kelly says. “The Care Team has been wonderful because they provide so many details about safety. I’ll read the hand-outs they give me, and I’ll add their tips into the mix. I have the time now to fine tune things. When you get to talk to other people, you get another perspective. I’m talking to people who really care about what I go through. You sometimes question, ‘Am I making the right choices?’ It’s good to get feedback.”
Caregivers are responsible for taking daily notes about their loved one’s health and well-being, which has made Kelly aware of health patterns she otherwise might not have noticed. “The daily notes have been great; sometimes it feels like it’s just routine, and then you catch something that is helpful,” says Kelly. “All these details now become magnified when I would have never zoomed in on them.”
Kelly says that caring for Arielle at home has also allowed her daughter to enjoy quality time and “teachable moments” with her family. Mornings are spent getting dressed and listening to peaceful music that they start and end each day with. Mother and daughter sing Gospel around the house and meditate on Sundays. On weekends, they visit with family. Her aunts and uncles are teaching Arielle to dance. Arielle is teaching her younger cousin how to play piano. They both agree they look forward to Caregiver Homes events; a Christmas party, an appreciation dinner.
Kelly learned from Caregiver Homes that, if they identified a back-up caregiver who could be trained to take care of Arielle, Kelly would be able to take a break from caregiving for a little while—something she had not been able to do in years.
“I had peace of mind,” Kelly says. “It was OK to finally have a vacation. I knew Arielle was safe and was with my sister, somebody who knew her routine. You feel guilty when you take time for yourself when you’ve been caring all their life. And I didn’t feel guilty this time.”
“They said I wouldn’t be able to do it. I told them I’ll figure out a way. Caregiver Homes was a godsend.”
Kelly has referred other parents to the program and explains how it changed her life.
“I was worried, and now I don’t feel that worry as much,” Kelly says. “I feel like I’ve found the happy balance since I started with Caregiver Homes.”
“The bottom line is love. This is a way to provide as best as you can. Caregiver Homes is a source to let you do that. This is your life—why not get the best of it? Even though you don’t want to talk about all these private things you go through, more people than you know are walking this walk. You love your loved one, do the best for them.”