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.