There is No Dignity In Dementia
It’s impossible to explain to those who have never been exposed, what it is to watch your family become consumed with managing the care and emotional turmoil of a parent ailed by dementia. This month will be the 10 year anniversary of my father’s first diagnosis (Parkinson’s) and I’m ashamed to say that I spent most of those years avoiding it.
I never felt particularly close to my father; we had a notoriously strained relationship. When he got sick, it was easy for me to resent him. It was easy for me to blame him for ruining my mother’s life… and I did. I blamed him for not being more ‘enlightened’ or ‘surrendered’, for not being more health conscious, for not learning how to express his emotions; things I believed would contribute to a person’s complete loss of control over their own body.
I judged my mother harshly for not cleaning her house, exercising, or getting more sleep. I became frustrated at the constant interruptions when I tried to speak to her on the phone. I began to call less and always had a valid excuse not to come visit.
After a long, harrowing slog and increasing financial woes, it became obvious that we were not dealing with a simple case of Parkinson’s Disease. Three years ago the doctors diagnosed my father with Lewy Body Dementia, what’s commonly known as one of the most horrifying degenerative cognitive diagnosis one could receive. It’s a disease marked by extreme night terrors, hallucinations, and difficulty moving. It is the same diagnosis that prompted Robin Williams to choose suicide over an inevitable downward decline.
So after years of avoidance, it became clear that things were only getting worse and I could no longer pretend that my presence wasn’t needed in my family. Last year I received a lot of guidance and support in 12 step programs; I attended AL-ANON meetings, for the family and friends of alcoholics. To be clear, my parents have never been alcoholics; a major part of working the steps is accepting the things you cannot change. Spoiler alert! You cannot change: literally everyone who is not you. In my case my father, in his state of dementia, is very much like a drunk, in fact, we refer to his most unpleasant personality (Lewy), as a mean drunk.
In January of last year, I made an amends with my father, aiming to take responsibility for the places where I had projected my health, my sanity, my financial solvency, etc onto him and I voiced my intention to give up the struggle of believing that things should be different than they are and rather to accept reality as it is, dementia and all.
My most recent visit to see my folks was intense, beyond intense, and yet I had managed to be more engaged, more helpful, and more present to it than ever before; I had stopped fighting it. I could go on and on about the details… I could tell you about the heartbreaking moments where he becomes sentient, when he’s pitiful and terrified because he is aware of everything he is losing. Even when he’s not aware, he is terrified because his body has turned against him and he doesn’t know what’s real. I could tell you about having a blood boiling, adrenaline inducing stand off with my father for hours at 2am, him naked with a manic look in his eye, me having been awake all night tending to him, begging him to go back to bed. I could tell you about when he lashes out and tries to hit me, or when he tells me I’m useless and he doesn’t trust me. But, you’ll never know what it’s like because it’s so individual, it’s so personal, and most importantly it is so deeply hidden in our culture. Unless you are in the medical field, or have experienced it first hand as a caregiver, you probably have no idea what it’s like to deal with this kind of thing. (I didn’t.)
In our culture we use dignity as an excuse to never reveal our shadows. I’m calling bullshit. There is no dignity in dementia. The only way for a dementia patient to have dignity, is for those who care for them to cultivate a lens of compassion. To look upon the person who has lost control over every movement, thought, action, and emotion (things we take for granted) and have empathy for them. The only way to have empathy and compassion is to have exposure; to get your hands dirty, open your big beautiful eyes, stay up all night with your crazy father/mother/uncle/aunt/cousin/neighbor and see what real people are going through.