ONE TOUGH MOTHER

SMART ENOUGH TO PUT ME FIRST

BY CHRISTINE PIACIENTO

Caregiving of any child with a chronic illness takes a toll. Caregivers put their own needs aside and focus on the wellbeing of the person receiving care. Most people think that this is a noble way to live. Someone sent me this quote by Helen Barry “Putting yourself first doesn’t mean you don’t care about others. It means you’re smart enough to know you can’t help others if you don’t help yourself first.” My son is 29 and relies on me or an aide to dress, shower, and toilet. He lost his mobility when he was 21 and can no longer stand without his standing wheelchair.

Caregivers often lose friendships and feel that if they leave their child in the care of others, the child will suffer; they are afraid to go out, let alone spend an overnight with a significant other or a group of friends. In reality, caregiving can be isolating. During the Rochester Woman Online’s Influential Woman’s summit in Syracuse, I met someone whose son had Down Syndrome; she told me about David’s Refuge. The mission of David’s Refuge is to provide connection and respite to caregivers of chronically ill children. As she explained the organization, I thought if I needed this type of support, there must be other people out there that could benefit from the services of this organization.

David’s Refuge was started in 2012 by Warren and Brenda Pfohl; to honor their son David and their caregiving journey. The organization’s mission is to provide Respite, Resources, and Support to parents/ guardians of children with special needs or those with life-threatening medical

BY CHRISTINE PIACENTINO

conditions. Their vision is to empower caregivers to lead their families with strength and grace. David Pfohl was diagnosed at age 8 with Batten’s Disease, an incurable genetic condition. For 13 years, the Pfohl’s provided high-level medical care to David in addition to being Mom and Dad to him and his two brothers. Their firsthand experience showed them the daily struggles that parents in this role face. They started David’s Refuge to provide a break for these parents and provide a place to rest, refresh, and restore. In addition,

they would provide a layer of caring and community by reminding these parents that they were not alone on their journey. David’s Refuge serves over 1000 families in Upstate NY and beyond. Their main goal is that every parent feels and is reminded through their services that they are not alone, that caregivers do, in fact, matter, and that God and this community love them. I reached out to Kate Houck, the Executive Director, to find out more and raise more awareness across the state for their mission. Tell us a little bit about yourself and your background.

My name is Kate Houck, and I am the Executive Director of David’s Refuge. I joined David’s Refuge in January 2015 after a 10-year career working in various leadership roles with the Central and Western NY chapter of the Muscular Dystrophy Association. Throughout my career in the non-profit world, I have enjoyed the responsibility of leading creative and hard-working teams; and watching the magic transpire when our mission connects to local leaders who care. In addition to my work, I am the proud wife to Paul and mother to Nathan and Leah. I grew up in Holley, NY, and met Paul at SUNY Cortland after majoring in Communications. We live in Fayetteville, NY.

What made you join the team as the Executive Director of David’s Refuge?

I was inspired to join this team in 2015 because I had first-hand seen the results of untreated caregiver burnout in my ten years at the MDA. In my role there, I would see the vast struggles, including social isolation, financial hardship, marital challenges, mental illness, and physical burnout that these parents would face. I also knew there were minimal resources available. When I heard about David’s Refuge, I was excited to be able to offer this service to the MDA families, and when I heard that they were hiring, I jumped at the chance to be part of a mission that was so different and so

“My innate drive is working alongside the team and how they continue to show up with open hearts, minds sharp, and compassion full blast each day in service to our families.”

different and so needed in our community.

What motivates you?

My innate drive is working alongside the team and how they continue to show up with open hearts, minds sharp, and compassion full blast each day in service to our families. David’s Refuge is doing this through our work in the caregiver community. We have the honor and privilege of empowering and connecting with local leaders who inspire us daily. We work to inspire, encourage and remind each person we meet of their greatness. Leave each day, week, month, and year knowing we contributed.

What made the founders and staff believe David’s Refuge would thrive?

The Founders saw the need for this in our community. They knew that caregivers were struggling and decided to do something about it. There is no one else doing what we do.

What is the organization’s most outstanding achievement to date?

Since I began with the organization, we have experienced yearly staff growth in addition to growing our services. Our culture of open communication, trust, and vulnerability allows us to execute high levels of service and excellence with a small staff. I would have to say that the thing I am most proud of each year is our ability to be nimble and adjust to whatever the world throws at us- all while holding tight to our mission, vision, and values. We will be working to refine a new concept launched just last year called the Caregiver Summit and Wellness Retreat. This concept allows us to bring our mission “on the road” and support communities who might not have a service like this available to caregivers. Our “Roadshow” is in addition to our well-known Respite Weekend, Wellness, and Community programs. The other side to speaking to a bright future is to create a sustainable and solid funding foundation. We will work to expand our Legacy Fund and Endowment over the next five years to ensure we have the funding we need to realize all of our goals.

What has been your best form of promotion for the non-profit, and what platform is your favorite?

For David’s Refuge, we thrive on organic growth through word of mouth. We currently have a 100% satisfaction rating, meaning that 100% of the surveyed families would recommend us to another special needs parent! We also have great success on Social Media. Many parents connect with us through 2 Facebook platforms- a private page just for caregivers and another for our company. Our staff connects to many of our supporters through Linkedin. Both Facebook and Linkedin provide a fun way to share our progress and demonstrate the impact of each investment. Once we serve a family and feel loved and supported, we are honored that they tell their friends.

What advice do you have for caregivers who might not be able to get away for a weekend of respite?

I would encourage them to apply to be part of our community! In addition to overnight respite, David’s Refuge offers many other ways of connection. We have our Facebook page, virtual wellness offerings, community events, and a dinner reimbursement program. By applying to be part of our community, you can select which services work for you. We know each journey is different, and we are here for you!

What are some mini respite tips that everyone could use?

Know the Signs of Caregiver Burnout.

Here are the most common:

· Lack of energy · Overwhelming fatigue · Sleep problems (too much or too little) · A feeling of hopelessness · Changes in eating habits (weight gain or loss) · Withdrawn from or losing interest in activities you once enjoyed · Neglecting your own physical and emotional needs · Becoming unusually irritable, impatient, or argumentative with the person you care for · Anxiety about the future · Difficulty coping with everyday things · Headaches, stomach aches, and other physical problems

Once you identify that you are experiencing burnout, take the time to: · Ask for help – asking for help does not make you an imperfect caregiver. Caregiving is best if not done alone. · Permit yourself to take breaks. Get out of the house, visit with friends, go for a walk, and do something just for you. · Take care of yourself. Don’t skip your

“Our culture of open communication, trust, and vulnerability allows us to execute high levels of service and excellence with a small staff.”

doctor’s appointments because you are too busy. Exercise, eat well and get enough sleep.

· Add in small moments in the day just for you – get up 15 minutes earlier than everyone else and enjoy a quiet cup of coffee, practice deep breathing/meditation, yoga, or pray; even if it is just 5 minutes, do whatever works for you.

If caregiver burnout is left untreated, it will impact your health, relationships, and mental state. When you get to that point, the people suffering are you and the person receiving your care. Self-care isn’t selfish, and it isn’t a luxury- it’s a necessity.