Al Cutri, Syracuse
1. Can you start by telling me a little more about how you became a primary caregiver?
My grandmother and my great aunt, I was caring for them, not completely full time, but almost full time. Going there three times a day, feeding them, staying there for hours at a time, monitoring their eating to make sure they didn’t choke and things like that. So, it started with them. My great aunt, who was 99 at the time, passed away. In December of 2013, a few months later, my father was diagnosed with a glioblastoma brain tumor, so as soon as my aunt died, I went right into caring for him. If anybody knows anything about that particular tumor, it’s a death sentence. It’s a very powerful type of cancer. From diagnosis to death, it was eight months of constant attention and caregiving. I moved back home with my parents to help with that. He passed away that same year, in eight months, in September of 2014. My grandmother was still being cared for simultaneously. A few months later, in January, my grandmother passed away. For probably three years straight I was a caregiver for one of three people. It was a lot.
2. What were some of the demands/challenges you faced on a daily basis?
Being on call all the time. There wasn’t really a schedule at this point, it was more like 911. So, you would go and you would spend all your time because you were afraid that was the last time. You were afraid of what could happen. You lived in a constant state of anxiety and fear and sadness. My phone, every time it rang, my heart stopped. You leave for two seconds, and you get a call, then you have to rush back. Or you go to a meeting, and then you get the call you need to go back. Or the middle of the night calls. I’m an only child and an only male in my family, so when my dad was sick, it was all on me to do the things that I had the strength for. My mom didn’t have the strength to move my grandma from one area to another or help them in the bath-room or things like that. I think the biggest challenge was not the work itself, but being torn with how do I live my life in somewhat normal fashion, but also care for them in the best capacity that I can. And then a lot of strange emotions came up. There was resentment, there was anger, there was guilt. I think remaining emotionally stable was the biggest struggle, not the work itself.
3. What was the most rewarding part of being a caregiver?
Unquestionably knowing that I did everything that I could possibly do. There’s not a single regret. There’s not a single “I wasn’t there,” “I didn’t live here,” “I didn’t come home,” “I didn’t see them pass,” “I wasn’t there.” I don’t ever have to feel that.At the time, I felt like it was this giant weight on my shoulder. Looking back, it was nothing.
4. How did you find out about David’s Refuge?
Totally unrelated to any caregiver role, I was part of a video project, and that was how I was introduced to the organization. Years later, I met Kate through networking, and we stuck up a friendship and just a business connection. I’m on the board for another organization called Charity for Children, where we assist those kids and those families. There is a lot of overlap in clients, because the parents of those kids then get helped by David’s Refuge. I haven’t had any direct client relationship with David’s Refuge, it’s just an understanding of caregiver mentality, but from the reverse angle. I think that a caregiver is caregiver and the same principals apply. 
Jacquie Edsall, Manlius
1. Can you start by telling me a little more about how you became a primary caregiver?
I became a caregiver when I was 13. My brother, David, was hit by a car when he was 10 years old. He suffered a traumatic brain injury. After his accident, he needed care. I helped care for him until I went off to college. Then I spent a couple of years as a nanny. After that, I moved back and became David’s full-time caregiver and have spent the last 20 some odd years caring for my brother. I also get to hang out with other families who have kids with special needs. I have been doing that for about 15 years. It is so much fun.
2. What are some of the demands/challenges you face on a daily basis?
Being able to think on your feet and needing a lot of patience. Even with typical kids, they have opinions on what they should get to do and not get to do, and so you would need patience with typical kids. Working with kids with special needs, you still need that patience. I think patience is one of those things you can never have enough of. I do think being flexible and being able to think on your feet is really helpful. This morning, I was trying to help a teenager get ready for school. She really didn’t want to get out of bed, so coming up with ways to encourage her to get out of bed so we could have a good start to our day and not start our day with confrontation or anything. That’s always helpful.
3. What it the most rewarding part of being a caregiver?
Just the day-to-day with my brother, I really do enjoy that. Yes, it’s hard at times if it’s a bad day, but he has the best big old belly laugh when he’s just so happy about something. Being able to bring that out and just have fun with him even if it’s something silly. Like with COVID and everything being shut down, when we found out Starbucks opened back up and we could go through the drive-thru and he could get his favorite drink, that just made his day. Just being able to do that each day and find the joy in getting a cup of coffee, you don’t really think about that. But for my brother, that can be the highlight of that day.
4. How did you find out about David’s Refuge? How has it benefitted your family?
I actually used to take care of David Pfohl. Warren and Brenda Pfohl were the people that started David’s Refuge due to their son David. The best part about David’s Refuge, besides obviously providing respite to all these families and events and stuff, is I always look for ways to get my brother involved with places. We do it with our church and we do it with David’s Refuge. I always explain to him it’s important to help people and he says yes. When Brenda and Warren first started [David’s Refuge], they asked if anyone wanted to help with making baskets and delivering them. I talked to my brother about it, he was all for it. Not only do they want to help people, they bring in people of all abilities to volunteer.
Joe Sullivan, Syracuse
1. Can you start by telling me a little more about how you became a primary caregiver?
My son is 31 years old. He was born with a rare condition called Angelman Syndrome. It was a two-parent situation for about 11 years or so, and then as is the case with many parents caring for disabled children, we divorced, and I became the primary caregiver.
2. What were some of the demands/challenges you faced on a daily basis?
There are many. One of the greatest things is getting support. Getting nursing care, people to care for your son and give you any assistance they can provide so that you’re able to work. That was probably one of the biggest challenges. I eventually lost a position due to lack of nurses and availability, then it was my primary responsibility. That makes it very hard to go to work when you have a child who requires complete care. Navigating the “system” is probably one of the greatest challenges.
3. What was the most rewarding part of being a caregiver?
It’s a very very stressful thing. My son currently is living in a long-term care facility as a result of my health problems back 10 years ago now. Most rewarding is just knowing that you’re doing the best that you possibly can with what you have to work with in spite of all the obstacles that are abundant. It’s a very challenging role. You become very isolated. You lose friends. You lose family members. Most rewarding is knowing that I’ve done that best that I can and that he’s in the best place that he can possibly be.
4. How did you find out about David’s Refuge? How has it benefitted your family?
I actually found out through a networking group that my wife – I’ve been blessed to have been remarried – met Kate through and learned more about their mission. She felt that we might be able to volunteer and maybe we could help other people. We became volunteer hosts, hosting families of other parents that provide care to disabled children. There’s nothing like being able to sit around with other people who get the proverbial “it” and can understand the challenges that we face daily and not have people’s eyes glass over when they have no idea what you’re talking about. Being up all night, doctor’s appointments, surgeries, all those things. People just don’t really grasp the challenge. Hoping somebody would come through the door to assist you with care for your child. That was one of the big things that we were always hoping for. It’s kind of like living on the edge all the time. It’s very challenging. I can’t say enough about David’s Refuge and its mission. It’s filling an extraordinary void. The need for respite, the need for maintenance of marriages is extraordinary but often overlooked. There’s a very high rate of divorce among families that have disabled children because of the stress, because of not maintaining your relationship. It’s also very stressful on your typical children. That’s a real balancing act right there. The family dynamics are something that are very important. They recognize the tremendous benefits that you get from a getaway weekend.
LaToya Jones, Clay
1. Can you start by telling me a little more about how you became a primary caregiver?
What I call my son, he’s my superhero, he is a traumatic brain injury survivor. Ultimately as a result of that, I became his primary care provider after he was discharged from the hospital. At the time, he would have most likely required going to a different level of care, but because I’m his mom, I was not going to let him go to a facility away from his family, away from Syracuse, be-cause there’s not really facilities here for children. When he was discharged, he required a PICC line to have medications infused and some other things, but I felt like his best recovery would have been with his family. So, I chose to bring him home. I be-came his mom, his nurse, his everything. That meant no work at the time. I took care of all his needs from medication to bathing. I was kind of like a case manager as well. I made sure he had his physical therapy set up to come into the house, his occupational therapy, anything else that he needed.
2. What were some of the demands/challenges you faced on a daily basis?
The challenges and demands starting out as a caregiver are meeting every need. Because I was working at the time, that meant I could not work. When I did return to work, I had to work around where I could get help with my son. Although I still needed to provide for my family, he is my family, and his needs and his care were my priority. Trying to balance being a working mom, but also making sure his care needs were met – his bathing, making sure his therapists and his occupational therapists were doing what they needed to do, and making sure they were scheduled. Ultimately, I took care of everything for him to make sure he has all the services he needed to be as successful as we could make him as he continued to rehab. We call them demands and we call them challenges, but I just call it working through our craziness.
3. What was the most rewarding part of being a caregiver?
His smile. He’s so appreciative. And just him caring enough to ask me how my day was. Knowing that I can still get a smile out of him once in a while. Even though my days are long, and even though as caregivers we have to advocate with the doctor, we have to advocate with the schools to get what we need for our kids, if I can get a smile from him, it’s always better.
4. How did you find out about David’s Refuge? How has it benefitted your family?
I knew a little about David’s Refuge, but I got reconnected by Lisa Alford. We are connected through the disability community, and I think she knows a lot of the work that I do around healthcare, around disability advocacy, and about my son. When I talked to Warren and Brenda Pfohl, the founders, I thought it was the perfect marriage. They advocate, they care about the caregiver and what happens to our kids. Kate and I started talking about the different work and she said, ‘Have you taken a break yet?’ ‘Have you taken a break since what happened to your son and then the work that you’re doing?’ And the truth was no, I didn’t. The trauma and the frustration that I had with everything that my family went through, I put that into advocacy work. I was blessed for Healthcare Education Project to find me. I don’t see it as work. I see it as a blessing to be able to advocate for people. I ended up finding a way to put my trauma some-where to help other people like me, to get through some of the things that I was not able to get through, to help people find the resources, and to be kind of like a community connector to help people who don’t know about places like David’s Refuge to find rest. Being a caregiver can be demanding. It can be draining, especially for our caregivers who also work full time. And now in the pandemic, they’re doing virtual learning and also trying to make sure they’re keeping their kids safe from COVID. It’s really draining. Our family has turned our trauma into advocacy and formed The Joe Family Foundation for Disability Advocacy Inc. It’s an organization that works to empower minority youth with disabilities
