When people think about caregiving spouses, they often think of older adults. We only have to look at a young mother diagnosed with Multiple Sclerosis (MS), a young husband diagnosed with rheumatoid arthritis (RA), or in this case, a woman who’s healthy husband had a sudden, massive stroke, to know differently. Care partners come in all ages.
Kathi Koll, author of “Kick-Ass Kinda Girl: A Memoir of Life, Love, and Caregiving” knows the drill. She and her husband, Don, lived a life of glitz and glamour, working and playing alongside friends who were celebrities and politicians.
One seemingly normal day, Don, healthy and energetic, had just bounded up the stairs of the couple’s historic home to tell Kathi that he was on board with the remodeling project they’d discussed, when he suffered a life-altering stroke. Kathi would become Don’s caregiver for the next six years before his death.
The Candid Caregiver was drawn to Kathi’s story because this was not an elderly couple but one in the prime of life. Additionally, Kathi recognized that while her position in life didn’t make her devastation any easier, she did understand that she had a financial advantage that many caregivers lack. This awareness inspired Kathi to start a foundation to help financially strapped caregivers. The following interview was conducted by email and has been lightly edited for length and flow.
The Candid Caregiver: In your book, you called the time before Don’s stroke “the front side of the fence.” Do you still see that before-and-after division as defined or has time muted the line a little?
Kathi Koll: Yes, my life is much more in one piece now, but it took a lot of work. Time helps to soften sadness. The pain is never completely gone but tucked away deep in a corner of my heart. I have wonderful memories, but am now making new ones. I never thought I could get to this point, but I have. I try not to let myself fall into the trap: “I wish my life was still …” That is easy to do, but then one loses the opportunity to find joy today.
TCC: You also mentioned in your book that one of the most hated attempts at comfort was when people said: “God doesn’t give you more than you can bear.” Comforting people can be a minefield. Can you think of other things that people said that struck a nerve with you?
KK: Yes, many. “Kathi, I just read...” “Kathi, if you take Don to...he’ll be cured.” “Kathi, you have to...” Everyone had good intentions, but the overabundance of advice was difficult. It was informative, and I ran every idea by Don’s doctors, but 10 times out of 10, these ideas were impossible for my husband. Some people wouldn’t let up and had no idea what they were talking about. I learned a big lesson I try to follow today: It’s OK to pass on a suggestion (and in many cases they can help), but then leave it alone, otherwise it piles guilt onto the caregiver.
TCC: Part of the devastation that you felt was seeing your healthy, energetic husband struck down so suddenly. Were you conscious of going through the traditional phases of denial, bargaining, anger, depression, and acceptance that are often part of grieving, or did you feel that you were simply going full steam ahead without being aware of inner changes?
KK: I definitely was going full steam ahead at first. I didn’t understand what the doctor meant when he said: “Kathi, you need to slow down. Your life is now going to be a marathon, not a sprint.”
I was completely naive about strokes or disabilities and truly believed Don would be back to his old self in six months. Reality started to sink in after the first 18 hours, when he wasn’t able to move a toe, but I held onto the belief he’d recover — it’d just take a little longer. This was my denial stage, but at the time, I had never heard about the traditional phases of grieving. I didn’t really know I was grieving!
I clearly remember anger hitting me over the head one evening while I was sitting in my family room alone saying to myself: “How could this happen to us? This is something I only read in magazines about other people. I hate my life. Why did God do this to me? To him? It’s not fair!”
We had been living our new, devastating life for about 18 months. As reality was cruelly overtaking me, I realized the only way to survive was to adjust to a new way of living. Don was not going to recover and if we weren’t honest about it, the quality of our lives would never have a chance to get better. That’s when “our new normal” began. The old life was gone which, was difficult to believe. But I worked at helping Don have a new life doing a lot of the things he enjoyed, albeit in a much different way.
TCC: You were fortunate to have many friends to help you care for Don. You also had the financial resources to give Don the best care. This isn’t the case for many caregivers. During your caregiving years, did you recognize that, as horrible as your joint situation was, you were both fortunate in that there were resources available to you that others may not?
KK: Absolutely! Because of my husband’s success I was able to give him the best care possible. I often thought about people not as fortunate as I was, and wondered how they were able to do it. Right down to: How do they even afford the parking fees at the hospital to see their loved ones? When Don was still in the hospital, I’d ride the elevator to his floor wondering what I’d do if I couldn’t afford the $12 every day.
My solution was that, if I had to, I’d park at the nearby grocery store and walk a few miles. Caregiver pain and sorrow is the same for everyone, but the added worry of not having financial resources makes it worse. That is exactly why I decided to start a foundation to help caregivers in need.
TCC: Tell us more about what the Kathi Koll Foundation does and how it helps caregivers.
KK: My foundation helps caregivers through financial subsidies and a community outreach program. Through support from donors we are able to help struggling caregivers purchase medical equipment, take family trips, purchase food, pay utility bills, and many other much-needed, but finically prohibitive, items that help improve the quality of their lives. We can’t fix it for them, but knowing someone cares is in many ways as important as the financial help.
We also offer caregivers creative gifts, such as a day of respite for themselves, because I know first-hand how important it is for a caregiver to have a break. One of my favorite stories was a woman in Minnesota who wanted to take a photography class at a local museum. We paid for her loved one to be cared for by a professional caregiver while she took her class. She shared the wonderful experience with us, which made our team feel as good as it made her feel. I hope that through the work of the foundation and by sharing my own personal journey in my book, I will help caregivers practically and emotionally, and, most importantly, know they are not alone.