In January of 2014, Michael was diagnosed with dementia. There were a number of clues leading up to the diagnosis, but as is often the case, they seem much clearer in retrospect.
Michael sometimes had trouble with counting and numbers. Other times, he was confused about time. More troubling, for Louise, was Michael’s apparent change in personality.
“If I said I was sick, he would ignore me. Or if I said something big had happened – something great – he wouldn’t celebrate, or wouldn’t be happy,” she explains. “He appeared not to care anymore. It seemed to be a choice and it felt quite hurtful. And personal. It felt like he was distancing himself from me for reasons I couldn’t understand.”
Michael was tested, but doctors found nothing. Following the incident in London, he was retested, and the expected diagnosis was made.
“By the time we were in the room with the doctors, we both knew exactly what it was,” Louise admits. “While it was devastating in some ways, oddly enough, all this other stuff fell into place and I understood that none of this was a choice. He wasn’t being mean on purpose. He was, in many ways, kind of drifting away.”
Michael is no longer independent. He is unable to use the phone or the computer. The book he was working on – a memoir chronicling his prestigious medical career – has been set aside. Today, Michael is quiet, content, and passive.
“This is all new to me,” says Louise. “I wasn’t sure how I would react. You just pray to God that you can be kind and patient and compassionate. And I’ve learned that I can be. It’s not easy. There are days when I’m less patient than others; days I have to apologize to him for snapping. But I’ve learned that I can do it, and it’s such a relief to know that I can.”
Caregiving is extremely demanding – even hellish at times.
Caregiving, of course, is extremely demanding – even “hellish at times.” Louise’s writing has slowed. Shortened nights and busy days have generated a pervasive sense of fatigue.
Yet Louise considers herself exceptionally fortunate. Healthy and significantly younger, she works from home, and is part of a robust community of kind and supportive neighbors. Her strength, however, depends on something else.
“I love him,” she says. “That is fundamental. I love the man and I am happy to do whatever is necessary for a stable future.”
Indeed, far from a burden, Louise has discovered that caregiving, despite it complex challenges, can also be a great source of unique joy.
“Michael has taught me how to live in the moment. Yesterday doesn’t really exist for him. Tomorrow is a concept that doesn’t exist, and later in the day doesn’t exist – it’s right now. Are we happy? Are we safe? Are we healthy? That’s all that matters. It’s all been rendered down to those three questions at this very moment. Life has actually become extremely simple and very clear. Not easy – but very simple and clear,” she explains.
Louise plans to continue caring for Michael at home, where he is most comfortable and safe. With careful confidence and optimism, Louise has learned the value of encouraging and something pushing Michael to maximize his independence or to exercise his capabilities. But she has also learned the incredible power of acceptance.
“My job as caregiver is not to keep looking backward and mourning the man who was. Its about accepting him as who he is today. It’s exhausting to drag that amount of sadness and loss behind me. And it’s useless. All I can do is look at the man I’m living with today, and love him and accept him for who he is, and accept his limitations.”