The Determination of Denial. (Book Excerpt)

I've written a lot about denial but as it's one of the central issues of caregiving, as it were, it tends to come up a lot. I remained in denial of my father's symptoms for a good few years before I was finally forced to do something. It took him wandering in the cold and dark several times - being picked up by the police - before I reluctantly took a look at his home situation. What I found there disturbed me. He had been eating only carbohydrates, living in one tiny area of the house - without heat, not washing his clothes, and spending too much time alone.

I was immobilized by the fears of what my father having dementia would mean to me. At first, I was too sick and tired to want to act, and then I was too happy with where my life was heading to contemplate the huge earthquake that was my father’s potential dementia. I’m not proud when I say that I have no idea how far I would have let things go. Accepting my father’s dementia required all the things I was afraid of: rearranging and adding a burden to my own life; discussing unpleasant truths with my ill Father, convincing him that he needed to give up years of life and independence; and breaking through everyone else’s denial process as much as possible so that we could all be happy and safe. 

So many people report having seen worrying signs of dysfunction long before a crisis, and are subsequently angry with themselves for allowing matters to reach critical mass before stepping in. I can only tell them my own experience and that it was solely by the grace of God that nothing too damaging happened. This is not easy stuff. Perhaps you’ve started seeing the same kind of things that I did - maybe worse, maybe better - but you haven’t yet acted on it. One of my worst moments was discovering that my father had been eating so poorly - it was unclear whether he got any proteins or vegetables – and living so roughly and uncomfortably.

Maybe you’ve noticed your loved one isn’t as well-groomed and dressed as usual, or that they are forgetting basic tasks like going out for groceries, paying bills, or feeding themselves. Maybe you’ve noticed that cognitively, your loved one is still lucid, but they are staying at home more, not doing favorite past-times. Maybe they just don’t seem well. There are lots of resources now that tell individuals what signs to look for, but that still doesn’t make it any easier to take that first step.  You will always question what you are seeing and feeling.

Sometimes a situation progresses slowly, like ours, making it easy to ignore or put off what needs to be done. Sometimes, the health of a loved one can change in as little as a few days, a week, or a month, causing a crisis - since nobody is prepared for it, it can be difficult to accept and adjust quickly. We’d rather play it safe, believe in a comfortable lie for as long as possible, than have to deal with painful reality. 

You will never get me to say that it was anything but agonizingly difficult and a huge challenge to trump my excellent training in denial. It is why I empathize so much with new caregivers who have so much to fight through before they can get down to what needs doing. Everything did work out, more or less, for the best, however. I do believe that putting denial behind me changed me for the better and initiated an amazing growth process. Being able to see and deal with my fears helped me help my father through the hardships that were to come.

It may take an incident, accident, a visit from the police, or trip to the ER before we can shrug our way out from under denial and take charge. In our case, I’m glad that nothing worse happened – that nobody was hurt or killed because of our inability to face the truth. Going against denial, however, meant going against a lifetime of training in the subtleties and fine points of disavowing reality. It’s important to at least be aware of our denial, even if we can’t yet force ourselves to act. But eventually, we will be asked to lead the way by accepting the responsibility of addressing, managing, and being honest about the emotional and physical realities of the situation.