Adrienne spent six years as a caregiver, caring for her husband Steve who was diagnosed with lung cancer in 2005 and then for his mother, Sylvia, diagnosed with cancer two years later.
In this post, Adrienne talks about something I’ve learned can be called “therapeutic fibbing,” a communication approach sometimes used with people in more advanced stages of dementia when the reality they’re seeing may not match actual reality. For example an 85-year old woman may ask when her mother is coming to see her. Rather than correcting the woman by saying her mother no longer lives, a fact that could be extremely upsetting, the caregiver offers a response that is reassuring and then tries to refocus attention. It’s about giving priority to the person’s emotional truth.
Steve and Sylvia were not suffering with dementia, but they were very ill. Adrienne found that what they needed to hear kept their spirits up far more than focusing on harsh realities. She was tuning into their emotional need. But, as Adrienne explains, knowing when the “little white lie” works best and when one must face a difficult truth can be difficult:
As kids, both Steve and I had grown up in families that avoided uncomfortable topics. We’d hear something like “Your father is in the hospital” days after he’d been admitted. We both felt this approach was wrong—if we didn’t know someone was ill or in the hospital, how could we properly show concern?
For this reason, Steve and I had had always been totally up front with each other about things like this, but his ninety-year-old mother Sylvia was another story.
Sylvia came to live with us when she was diagnosed with lymphoma. I became her primary caregiver, responsible for her well-being. For me this included keeping her spirits up. I soon discovered that if Sylvia felt like she looked good, she felt better overall.
In fact, she didn’t look good when she first arrived. The illness meant she’d lost a lot of weight and her clothes no longer fit her. I got her a whole new wardrobe and it worked wonders. It kept her in the moment. “How do I look?” got an honest answer—she looked great. Until she didn’t. Then conversations were about her hair and her weight and how weak she was. I would reassure her that her hair would grow back, that we’d see to it that she gained weight, and that being weak was to be expected in her condition. After treatment, she’d get her strength back. In the end, reassurance was just about love.
It was different with Steve. We had an honesty pact in place long before he was diagnosed with cancer. With Steve it wasn’t about telling him he looked great when maybe he wasn’t—he continued to look great until the end. Keeping Steve’s spirits up was about telling him daily that “It’s going to be okay” when it came to the little complaints that meant nothing. We believed in this positive approach—we had a magnet on our fridge that said: “Everything will be okay in the end. If it isn’t okay, it isn’t the end.” So, “okay” became making the most of each day and preparing for an end that would be “okay.” And, in the end, everything was all right—for him. He passed quickly with me comforting him by his side.
Steve’s mother died in June of 2010 and Steve died in March of 2011. So, I could continue knowing I had done everything I could both for him, and his mother, and I have no regrets. I guess, in a very odd way, everything IS all right. Given the givens, I’d change nothing, and knowing that is a blessing.