My dad and I both grew up occasionally hanging out in the second largest canyon in the country. Palo Duro Canyon near Amarillo is a miniature version of the Grand Canyon — beautiful red, orange, and gold walls with towering rock formations. One of the popular sights in the canyon is called Devil’s Slide. I doubt it’s allowed anymore, but when I was a teenager, and long before me, when my dad was, the way to prove how gutsy you were (or how stupid) was to hike up the side and slide down sections of the steep embankment — sometimes on cardboard, sometimes not.
Standing on the trail at the bottom of the canyon looking up at the red rockslide, it looks steep but smooth. It’s not. It’s a shred-your-jeans, yank-the-shoes-clean-off-your-feet, obliterate-the-palms-of-your-hands stupid-teenager-eating monster littered with rock rubble sharp enough to send you to the ER.
The slide into dementia is not a brightly-colored water slide with a few bumps along the way and a gentle splashdown at the end. In my experience, at least it’s Devil’s Slide — with no cardboard allowed to protect your backside on the way down.
My dad has dementia
He can tell you about his adventures in Palo Duro Canyon, but most days he doesn’t know what year it currently is. We are still waiting on a firm diagnosis of exactly what kind of dementia, but the current thinking is Lewy Body Disease, which is like many other forms of brain disease, but with giant imaginary boulders for you to dodge on your way down the hill.
Most of us have this picture in our minds of people we know or have lost to brain diseases — the blank stares, the lost memories. I thought I had at least a decent idea of what dementia looked like — what symptoms I should watch for as my parents (and I) age. I had been around several people in my community who succumbed to Alzheimer’s, plus my stepmother had both Alzheimer’s and Parkinson’s.
But unless you are a physician, you will probably miss the early stuff. Part of the reason for that is the fact that we humans hide our flaws well. And even when we do see odd behavior in ourselves or loved ones, there is a tendency to deny, deny, deny.
Even my dad’s nurses and aides during the past year have been fooled. That comes from a bit of elderly profiling — we see an aging person and jump to the conclusion that they will have memory issues, but as long as they are walking, talking, and laughing we don’t look for deeper clues.
This is unique to our experience, but here are the rough patches my dad has hit on his way down:
- He can’t decide what to eat, when to eat, or how much to eat. This started with overeating, then took a sharp turn into eating very little. It’s one of the many symptoms of his inability to make plans or decisions.
- He can’t tolerate change. As in, even a too-large can of tomato sauce in the pantry throws him so off-balance that he won’t eat whatever it was the tomato sauce was purchased as an ingredient for.
- He is paranoid. My husband and I are the easy targets for this. That wrong-sized can of tomato sauce? It was part of our plan to starve him to death.
- He has auditory hallucinations. There are squirrels that scratch on his ceiling at precisely 10:30 every night and possums that are ripping the steel siding off of his building every night. And of course, the fact that we haven’t trapped them yet is all part of our master plan to keep him from sleeping.
- He has visual hallucinations. A group of women and children stand patiently by while he reads. Sometimes they wear coats. They disappear when he turns his head to look at them. There were also wolves staring at him in the dark one night. They got into a fight with the possum and threw all the patio furniture off of his deck. (I don’t want to meet THAT possum! Sorry, laughter is the only way down this slope sometimes.)
- He has delusions. While there is truth in quite a bit of what he tells people, there is also plenty of delusional stuff too. He deludes himself into thinking he has done things and seen people and had conversations that never took place, or they took place but with different people.
- He is losing his ability to interpret what his eyes see. This one is new. I noticed it at the eye doctor’s office recently. He can read the first few letters of the row of letters that is appropriate for his eyeglass prescription, but the last few letters get scrambled. This leads to some head-scratching by the eye doctor, who switches to a row of larger letters with the same exact result. Dad can read the first few letters quickly, but cannot read the rest. He re-reads the same six or seven books over and over — as the people stand guard and the squirrels scratch away.
- The world moves too fast for him. He complains constantly about people walking, talking, and eating too fast. Football games are difficult to follow and news programs are becoming incomprehensible. Even conversations with more than one person at a time are difficult for him to follow.
- He has no sense of time. He cannot usually tell you what day it is, when he slept, or when something in the past happened. He constantly refers to things that happened a day ago as last month. Things that happened last month are often two years ago.
- His handwriting is barely legible, but he writes things down compulsively. Every pill, every moment of sleep, every thought he has while he is alone, seems to find its way into a scribble on a yellow legal pad next to his bed.
- He is angry. At first, it was only as he struggled to find a word or realized that he could not remember something. Those moments are mostly gone now, replaced by the firm and angry belief that I am simply wrong about everything from appointment times to my conversational mention of how the local grocery store (which he has not set foot inside for a year) never seems to have medium-sized baking potatoes.
- He has lost his filter. He says things that polite humans don’t say to or about one another. He interrupts everyone as they speak — even after asking them a question. He recently told me to stop being a know-it-all when I told him that he may need a jacket outside.
There are dozens of physical symptoms that go along with his dementia — some of them make the mental issues seem like a child’s playground slide. Suffice it to say that he has difficulty with everything physical.
And yet, he can still walk, talk, laugh, tell jokes, crave cheesecake, love his grandson, cry for the sisters and the brother he has lost, and remember who I am. If I introduced you to him for the first time, you would likely never guess he has dementia. Even if you’ve known him for years, you might not figure it out right away.
My path beside his dementia slide is treacherous as well
- I struggle not to explain too much. Dealing with my dad is often like dealing with a three-year-old, so what comes naturally to me is to explain things. But explanations inevitably lead to anger, so I find myself talking less and less.
- I am a peace-keeping middle child. I abhor conflict, and yet every damn day I must not only face and mediate whatever conflict he is feeling, I am usually at the center of it.
- It’s hard to see past the anger to the love that he once felt. I know that he loved me and was proud of me. I know that just a year ago he worried about my health. (Now if I mention not feeling well he hangs his head and says, “Here we go again,” like a tired parent would say to a teenager faking illness to skip school.
- I hate that he can no longer see the love in my actions. Last week he screamed at me, “Why are you doing this to me?” There was nothing I could say that would make sense to him.
I hope you never experience this nasty slide up close, but there are things you can take away from my experience:
Don’t think that forgetting where the car keys are is a sure sign that your brain is slipping. It’s far more complicated than that. I have had more than one friend with loved ones affected by dementia say that the personality changes came first. One even said what a relief it was when they finally had a diagnosis; she thought her husband was just being an ass.
Get help sooner rather than later. Talk to someone about the weird things as they crop up. Once my dad admitted to the little people hallucinations, his doctor sprang into action with referrals, medication changes, and additional home care.
A caring and compassionate team of healthcare and homecare professionals can’t change the eventual outcome, but they can be your guides as you make your way through the roughest parts.
Remember that extended family members are an important part of the triage team waiting on the side of the hill to ease the bumps and bruises. You need them on your side and the actual diagnosis helps put them there.