Kathi Koll, of Newport Beach, tells writer Rachel Powers about the seven years she cared for her late husband, real estate developer Don Koll
Don called me in the middle of the day from work and said, “I don’t feel good.” Part of his face was numb and his balance was off, so I asked, “Do you think you’re having a stroke?” And he said, “I don’t know, but I’m going to the hospital.” When I met him there he already was on a gurney, though he could hug me just fine. But after he woke up from surgery, he was completely paralyzed. And that was the first time I ever saw my husband with fear in his eyes.
I said, “Don, let’s look at this as a sporting event. I’m on your team and we can win this game. I just need to know if you want to play the game. Give me one blink for ‘yes.’ Give me two blinks for ‘no.’ ” And he gave me the biggest blink you could ever imagine. So that’s how I knew he wanted to fight, and really work at having a life. I would have adjusted to two blinks. But knowing him, I would have been surprised.
It was scary. All of sudden I was a caregiver. And I was extremely sad. But I thought, “I’m wasting my time looking back at the life I used to have, because I’m not going to have it again.” Just like I’m never going to be in high school again. I knew if I could make Don feel confident and loved, then we were going to have a good time. But it took baby steps.
I learned to be more open about my feelings, which is important for caregivers. The world revolves around the patient, and they can become selfish. They get frustrated. There’s no one else to bark at, so they take things out on the caregiver. It’s devastating.
Then I decided we needed some sense of normalcy: What would I have done if he’d treated me like this before he was sick?
I said, “I’m hurting too. I’m having a hard time. And it wasn’t my fault you had a stroke. But I am here for you and we’re on the same team. It’s still a team. But I think the best thing is for us to take a break. Thirty minutes, an hour, whatever it takes. I’m going into another room to sit down and think about this. And I hope you take that time to think about things, too.”
So I sat in that room and thought, “At times we’ve actually had fun through all this. I’m just going to go back in the room and say ‘I love you.’ ” And he mouthed back to me, “I love you.”
I would kiss Don. I slept with him the whole time. It was just two hospital beds next to each other, but I could put my arm around him. I would say, “Wow, I love the way you smell.” Because I always had, and it never changed. It made him feel good, and gave him a good memory for that day.
But the patient needs to do the same thing. I’d say, “I have to feel like you appreciate what I’m doing. I just wish once in a while you’d say ‘Thank you.’ ” I never had to ask him to say “I love you” because it was something he did a lot. So really, that was his way of saying thank you.
When you understand, finally, that this is going to be your life, it really is a blessing. I used to say, “OK, I’m going to take care of you for 20 years. And at the end of 20 years you’re in charge of me.” And that used to make him smile. He’d always say, “OK, that’s our deal.”
Visit Koll’s foundation at livelifeafterstroke.org to find resources for stroke patients and caregivers.