Those of us who know someone with dementia understand that it’s both tragic and very confusing. It is a loss of brain function that occurs with certain diseases. Basically, it’s an umbrella under which there are different variations, Alzheimers being the most common.
About 4-5 million people in the U.S. suffer from dementia to some degree and as our population ages, that number will increase.
For me, dementia means watching the man my father was slip away. It means never knowing if I’ll find him happy, angry, non-responsive or delusional. It means a slow yet steady decline that has finally left him unable to feed or care for himself or even speak most of the time.
I knew things weren’t right with my dad two years ago when we moved him to Atlanta. But because he lived far away and because those with dementia are masters of disguise, using pat answers and generic phrases to cover when they don’t understand something, I wasn’t aware of his decline.
I attributed his sometimes strange behavior to older age, to my mother being sick, to my dad having to give up his beloved career and car and being forced by circumstance to move. But as the months passed, I realized that he couldn’t care for himself.
Neuropsychological testing found that he had severe dementia. So when a spot opened up in an amazing nursing home, I decided to move my father in. It was one of the hardest decisions I’ve ever had to make.
Though he was not pleased about it, it was almost as if once he was there he could let go and stop trying to pretend he was okay. He embraced the care he got, but his decrease was rapid.
For me, learning to deal with my father’s new reality was tough. I learned that I must treat him with respect and give him his dignity. To do that, I had to validate the world he was living in, no matter how bizarre.
When he announced he was in love and engaged to his health aid, I said congratulations. When he asked me for money to go somewhere I knew he would never go, I said fine. When he told me he was being tortured and tied up with clothesline, I sympathized with him and said I would look into it.
If I’d told him he wasn’t making sense, he would have felt even more isolated than he already did. And while it’s harder to do this than you would expect, after a while it feels almost natural.
Recently, I watched as, in a half hour period, my dad raged and shouted, smiled sweetly at me with love, screamed in pain, wept uncontrollably and finally announce, “It’s a great afternoon.”
And within all of this are those brief but amazing moments of lucidity which I hold onto as much as I can. I tell him I love him and I hug him more than I ever have before. I know there is no going back and all I can hope for my father are that his days are mostly calm and happy.
Lauren Menis is a Dunwoody mother whose column appears in The Crier each month. You can reach Lauren at Lauren.Menis@gmail.com