Confessions of a Caregiver

I thought when Dad first arrived that this could be a precious time where father and daughter might open up to each other and share honest truths. After all, plenty of well-meaning friends have said, “Cherish this time, Debbie.” These well-meaning friends have never been in my shoes, I guarantee it.** With all that said, I am a realist and I know my father pretty well. He has never been a great communicator. He tells stories. The same stories over and over. Stories are valuable and so I (try to) listen. I wonder what it might be like to be 86 years old myself and have some ‘young un’ sitting there (pretending to be) listening to my stories, which reminds me that I sometimes repeat

Dad View
Dad doing what Dad does best these days

myself too. And it actually feels good to tell those stories, repeatedly. So I muster up some patience and try to be understanding. Who am I kidding? I’m very impatient with him, most days, but I try very hard not to let it show. Lucky for me he’s nearly deaf so I can mutter to myself as I walk away without him hearing me.

Dad has cancer, but he’s not exactly terminal. He has special needs and requires a certain level of care from me. However, he doesn’t want me to help him. He wants to be the big strong Dad that he’s always been for me. He wants to help me. So, when I ask him important questions about his health – how he is feeling, for example, he answers with, “Pretty good” or “Fine.” Then two days later he will tell me that he’s no longer feeling pain in his hips. However, he never mentioned the pain. This is his way of pretending, or being in denial, that there is a problem.

My first reaction is helpless frustration. Then I remember that this keystone of his personality (practicing denial) can play an important role as a survival mechanism that seems to work for him. So I invite Denial in. It occurs to me that I cannot prevent him from falling by simply staring at him as he walks away to another part of the house. Oh, the luxury of having Denial as your friend . . . Practicing the art of denial can provide a Zen experience, I suppose. Ok, I’m exaggerating; I’m the realist in the family, remember? So I watch, wait, and listen, 24/7.

**There are no right words in situations like this. Most of these friends have lost a parent and likely have feelings of guilt about how they wish they could have done more – no matter what the situation was. I know this because I have these feelings now, knowing I should be sitting with him more, rubbing his back more, holding his hand more, cherishing the moment more. I’m lucky that I run a business from home so that I can keep him in my home with me. But I also consider that the hardest part on most days. It’s absolutely like having two full time jobs. And neither one allows for a sick day, a vacation day, or a holiday off. The best words I have heard from a friend? “You’re DOING it, Debbie” and “You GOT this.” And I guess it’s true.

The Beginning

Like a lot of people, I live my life with eyes wide open. Except of course when I notice I’m entertaining my friend, Denial. Perhaps you know her? She’s nearly everywhere once you start paying attention. She means well. In fact, she might even be considered a life-saver in certain circumstances.

Dad's First Winter
My Dad, Winter 2010

A year ago I inadvertently became full time caregiver to my 85 year old father, the King of Denial. I use the word inadvertently because he was living in warm, sunny California, and we live in cold and windy Chicago, and although he needed to find a place to live, I never dreamed that he would choose to make a move like this at this point in his life. I invited him to come for a visit, thinking if he did he could see for himself how lovely it is here in the Midwest. He said no. The next thing I know, he is on a plane headed this way with one hastily-filled suitcase of his belongings.

I had fourteen hours to ready the guest room, stock the pantry with his favorites, and make a quick trip to Walmart for warm socks. It was November, after all, and I knew he wouldn’t be ready for what loomed ahead, weather-wise.

He arrived shivering on that 40 degree, rainy day in 2010. That was the beginning of my education on The Art of Living in with Denial.