Kristi and I first met when Journaling Through launched and Courage to Caregivers was still in the focus-group phase. Fast forward two years and we have stayed in contact, kept up to date with each other’s business endeavours and became friends. Promoting #womensupportingwomen is close to both our hearts as it not only tears down walls of competition, but the advantages to be in a tribe of women making a difference is invaluable!
We sat down with Kristi and asked her to share her journey as well as the origins of Courage to Caregivers.
Kristi picked up the phone, her brother wanted to end his life. It was unexpected. The family was aware of his chronic physical pain from past routine surgeries, however, the underlying mental illness had not been formally diagnosed. He simply couldn’t take it anymore. Kristi and her sisters supported him in person and after a while, the relationship resumed as a long-distance caregiver.
His wife and kids were his primary caregivers at the time. His marriage, unbeknownst to Kristi and her sisters was so far gone by the time they were called in for help. They couldn’t work things out and after the custody issues, selling the house etc. things just started getting worse and worse. He refused to take medication, which he felt would exasperate his physical pain and even after seeing a therapist, there was little change in his mental or physical state.
“It’s easy to look in from the outside and say that he should have or could have done this or that to help, however in the end, his actions were still his choice and we had to come to grips with it one way or another.” Kristi and her sisters were actively caring for someone with mental illness and with so much privacy, they didn’t feel that they could tell the story. “We didn’t understand the importance and criticalness of our own support. He felt stigmatized and shunned, a recluse in his own home. It’s hard to trust people with this sensitive information, difficult to know who we could reach out to.
For the family, we didn’t even think about telling our story, yet everything else in our lives became a lower priority. We became isolated, ashamed and this kept us from sharing the story. We learned so much about how big the void is for the caregiver to take care of yourself.”
How did you realize that YOU also needed support and that your story is just as valuable as your brother’s?
Kristi chuckles, “Oh we need help? That was a huge part of the problem. For all the people we called, experts in the field to try and find a plan or support, the results were limited. The suicide prevention line offered some suggestions to help with the person contemplating suicide. Nobody ever recommended NAMI, it was only until I did my own research for Courage to Caregivers that we found them. We are suffering too and we don’t know where to go for help or guidance. It wasn’t until he was gone that we realized that nobody else has to feel lost and ashamed. Once you are willing to share your story everyone comes out of the woodwork.”
There is still a stigma in some traditions or religions on suicide, how did you overcome or embrace some of these challenges?
Kristi is very engaged in her church, so it was more like a celebration of life than a funeral. It was much harder for her parents. People close to Kristi didn’t want the service to even mention the word suicide. Eventually, they agreed and it was like a weight lifted from their hearts. The truth was there for all to hear and to everyone’s surprise, the perceived judgement also seemed to lessen. In Kristi’s words, “This wasn’t a sudden questionable death, it is what it is: suicide.” Being open about the circumstances was a great part of everyone’s healing journey.
"When we started to tell our story, it gave permission to others to tell theirs."
When did Courage to Caregivers take shape?
“Almost immediately after the funeral, I decided to start the organization to help caregivers,” Kristi remembers the piles of work in closing the estate, going through the grieving process, finding the letters that her brother wrote to her and organizing professional help for her family, especially her parents to help find closure. “There was a lot of self-blame. Once we started sharing we started healing.” Kristi held onto the mantra of tomorrow is a new day.
She found solace in her faith and even though they lost someone, she realized her calling is to support caregivers. “I wanted to wait until probate was done and then start the organization. I met with a woman who has two children. She reached out to me wanting to talk to her kids about mental illness their dad was diagnosed with but didn’t know how to do it. She’s an entrepreneur that told me straight, you cannot wait until you settle probate, the time to act is now.” She is Kristi’s personal accelerator to get the vision done. She set up appointments for them with NPO consultants and attended them all with Kristi. She pushed Kristi outside of her comfort zone. When your passion knocks you have to open the door.
Why Courage TO Caregivers?
“Look at the word TO - I put together a think tank, facilitated an exercise on names and logos and mantras. We wanted to stay close to our core values but words like hope have a faith meaning to it and we want our caregivers to know that it’s not a religious support group, we are inclusive to all caregivers. After running a small competition on namingforce.com, we landed on Courage to Caregivers. The TO implies that the caregiver, not the organization do the work. Courage is critical in this line of work.”
What was the most significant challenge when starting an NGO/NPO?
“I went to an all-girls private school in Cleveland and worked there for four years. We always promote growth as part of the curriculum. I was asked to speak at the International Day of the Girl to promote entrepreneurship and growth as an alumna of the school. Learning from my failures and finding other entrepreneurs and create a support network are my biggest motivating factors.”
The biggest roadblock for Kristi was from a friend from college who had extensive experience in fundraising. His brother has a mental illness, he told Kristi: “I’m sure it’s been great but you need to walk away now. I don’t want you to waste all your time and money on this endeavour.” Kristi has been told a hundred times it’s been hard, but never to walk away. This added some extra fuel to the fire to prove him wrong. Kristi’s reply: “Ultimately the most significant challenge will be the stigma of mental illness and the self-doubt of your own abilities as a caregiver. What is out there is not acceptable.”
How do you find your courage?
“The stories of other people, you can feel very alone. Next thing you know someone emails you and wants to connect. I have wonderful support from my family and community, that counts a lot when you feel the self-doubt creeping in.”
How do you prevent burnout?
“Don’t forget to practice what you preach!” Kristi reminds herself every day that self-care is the most important foundation to deal with hurt, pain and to stay courageous. She calls everyday things self-care and surrounds herself with good friends from all different walks of life. She pushed her own boundaries and reached out to a friend she hasn’t seen in 38 years! “Why did we wait so long?” was the mutual reaction.
“Take a risk, swallow your pride and reconnect with a classmate; a lifetime in a coffee date. Expand your own limitations by doing the things that are hard.”
Self-care is also about connecting. Loss of connection is such a big problem in our world today and aids with the isolation and feelings of depression. Make the time by placing a priority on healthy, non-judgemental relationships and self-care.
What would your recommendation to professionals in the caregiving field?
Kristi meets caregivers from all walks of life in her organization. Her advice is to train yourself in setting boundaries. Specifically around personal boundaries between you as a caregiver and those you provide care to. Recognizing that we have to prioritize self-care and can’t be “on” 24/7 in our caregiving mode. Kristi also recommends guided journaling to help with this self-care and boundary-setting process.
“Remember that you matter!” Self-care is of utmost importance, it’s not always smooth sailing, it can become very complicated. Kristi used to be on the phone and eat while listening to her brother. Eating was comforting her as she was comforting her brother. In four years Kristi gained almost fifty pounds due to emotional eating. “Two years after he died I realized that I need to reclaim my life. I realized that my WHY was that I matter and my healthy eating is part of who I am now. It’s been almost four years since my brother died.
There is no time-frame for healing from grief or loss, however with daily self-care, actively supporting caregivers and changing the stigma surrounding mental illness motivate me every day to face any challenge with hope and peace.”
Thank you, Kristi, for sharing your story with us. You are one of the most inspirational people we know!
If you are a caregiver in any capacity, professional or a family or friend taking care of someone, I urge you to reach out to Courage To Caregivers. Follow them on Instagram and Facebook and sign up for their newsletter by contacting them through their website www.CourageToCaregivers.org.
Although Courage To Caregivers is local to the Ohio area, most of their sessions and support are also available digitally.
NPO’s are run by donations, consider adding their Amazon Smile account to your Christmas shopping list, it doesn’t cost you anything and will make a world of difference to caregivers who need support.
Finally, three pilot programs will start soon, so take a look and sign up!
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