Karen Brown, 43
“The first word that comes to mind about sharing this is vulnerable. It feels very vulnerable exposing my life. I haven’t really shared anything with anyone, except to tell my boss I needed to work half-days because I was taking care of my dad and my uncle at once.”
Karen alternates with her sister as a caregiver for her dad, John, who was diagnosed with Parkinson's disease. In the fall of 2020 she also became a post-surgical caregiver for her uncle, Paul, who is battling pancreatic cancer.
“I never imagined giving him a shower or helping him in the bathroom or seeing him completely naked. It's weird because, especially as a daughter, you think of your dad as being the one protecting you. Now it is reversed; now I’m taking care of him.”
“I think he has really had to let go of his ego to accept help from his daughter.”
“He sleeps in his recliner too. In the morning I go straight downstairs. At least a third of the time, he has wet himself. So I have to get him to the shower, clean him up, get him back seated, get his breakfast, log in to my computer for work, and then it’s like my breakfast is an afterthought. That’s typically my morning.”
“This is something I am fearful of: getting Covid. Giving it to my family. I’m always being careful, constantly washing my hands, and making sure everything is clean.”
“We had this big clear Tupperware bin with all of his supplies. With the Whipple surgery, he had his pancreases removed, part of his stomach, part of his small intestine, gallbladder, and bile duct. So there was lot of gauze, a lot of syringes...
a bunch of stuff.”
“ ‘Good morning sunshine!’ he would say every morning. I knew my Uncle when I was younger, but never as an adult. We have now gotten pretty close through all of this.”
“I do all the cooking, all the meal planning, all the grocery shopping. This is what the kitchen looks like by the end of the day. I never go to bed without the dishes clean.”
“My uncle had another procedure to make sure that all the organs had resettled after his initial surgery. It was a work day for me so I brought my laptop and was trying to work while I was with him.”
“I do this every day: lighting a candle, setting an intention and journaling. I need the ritual to feel anchored. And I have a mantra that I say: ‘Infinite spirit, where would you have me go, what would you have me do, what would you have me say, and to whom?’
I try to be mindful of my actions, even though I don’t always win on that.”
“I took him on an errand in the truck. When we got home, I was getting stuff out of the truck and he got to the front door before I did. He started backing up with his walker so he could pull the door open but whenever he has to back up, he loses his balance. So I'm yelling: ‘Dad, don’t open it, don’t back up.’ He was already in motion. He fell backwards and busted up his elbow and his hip. I was freaking out, making sure he didn’t hit his head, especially since he is on blood thinners. When we got him up, he said: ‘I just want to be able to do some things myself.’ He feels like a burden and several times has said ‘maybe you should just go ahead and put me into a nursing home.’ I think he has a heavy guilt about not being able to fend for himself.”
“I have been beating myself up for this. I feel like I should have been there. He was in my care, it happened on my watch. ”