There are few things as difficult as seeing a loved one slowly fade to dementia. Their mind seems to depart to a realm that not even they can understand, a place where tangled and fragmented memories hold on to their ever fraying tethers.
There’s a scene in the movie “Eternal Sunshine of the Spotless Mind” when Jim Carry’s memories (of him and his girlfriend) are slowly being erased via a medical procedure he submits himself to to get over a breakup. He re-experiences the defining moments of his relationship,memory by memory, as they slowly crumble around him. As hard as he tries to hold on, he can only watch helplessly as his memories are cast out into oblivion.
He is, of course (in this fictionalized movie) aware of what is going on. Sufferers of dementia are, at least in later stages, unaware of what is happening to them. I had always heard that dementia is harder on the families. That at some point into the deconstruction of the self, they become blissfully vegetative. But that was not the case with my uncle. His struggle started with pain and appeared to be headed towards a painful end. We come into this world violently and we often depart violently. It seems that many adventures end right where they began.
My uncle and I had always been close. My aunt had never wanted kids and according to my parents, neither did he – at least until me and my sister were born. He loved us both deeply -and whatever resentment that may have grown in him towards his wife was channeled into love and affection towards us. My uncle Dave was our 2nd dad. He fixed our cars, took us hunting and fishing, loved boxing, and maintained an encyclopedic knowledge of all things that grow. His garden was immaculate, a technicolor offering to our often ash-gray Oregon sky.
He was 60 when the signs of dementia started showing. He would stumble over words and would get agitated easily. You’d be talking with him and he’d seem to just go blank. He’d always been a conversationalist, great a both listening and talking. Could make even the dullest of stories seem interesting. But all of a sudden it became difficult to speak with him, like he wasn’t all there. We chalked it up to old age. We laughed it off. My own Dad, who was a few years his senior, was also showing some senile tendencies. No big deal. This is how life goes.
It wasn’t until Thanksgiving of 2016 that we decided that something was indeed off. He got lost en route to a family party. Really lost, apparently. My uncle held staunch beliefs against the usage of GPS. This man knew every road in Portland by memory. In the midst of my family freaking out, we get a call from the police asking us to come get our uncle. He was found walking around in a rough section of town, wearing a suit in the cold rain. He had suffered some sort of dementia related psychotic break.
Fast forward a year and a half. We were at the point of considering hospice. He’d have good days and bad days. The good days give you this weird glimpse of hope, like some fragment of his personality is still there, a fragment of personality that surfaces from a deep, dark pool.Could be as simple as him remembering your name. He’d mention how beautiful the garden looks. He’d ask about how my old Honda was running (it had been scrapped for years). He would ask where his sister was (who had passed away a decade earlier from cancer). He’d ask for his wife, who was sitting right next to him. Then, confusion would overtake him. Panic.Restlessness. Agitation. He became thin and frail. He suffered from UTI’s and incontinence. The list goes on and on. Time is every man’s equal possession – and dying is a bitch.
Being from Oregon, marijuana has always been a part of our culture. Apparently my uncle, the gardener, had grown some pretty good stuff back in his more youthful years. CBD, however,had been growing in popularity for medical usage. I found a pamphlet in a health store on CBD for aging and it mentioned that it is quite useful in treating everything from sleeplessness, to pain, to appetite, and to inflammation. I had purchased some for myself and was using it to treat some neck pain I had been experiencing over the last year or so.
At this point, my uncle was being cared for in a dementia clinic. He wasn’t quite hospice ready(doctors gave him 4-8 months), but upon a routine visit, I mentioned to his nurse that I had been taking CBD for my neck. She mentioned that the families of many of their patients had been using it to ease some of the complications with dementia, mainly the anxiety and appetite loss that they commonly experience. It also doesn’t interfere with any of the other medications one would normally take in such circumstances.
The nurse said that she absolutely doesn’t recommend marijuana, as it has a tendency to induce confusion and paranoia. CBD, on the other hand, has no psychoactive effects and it’s considerably easier to administer. It was tough to get my uncle to eat anything, let alone a weed brownie. And he certainly was in no condition to smoke a joint.
“Please, don’t even consider doing that…” She the nurse.
But CBD was fair game. Like I said earlier, people are pretty used to marijuana in Oregon – and thus CBD was a pretty easy sell when I brought it up with my family. The only condition was that we’d wait until hospice to give it to him, as he’d be staying at his own home.
My aunt, who was admittedly more progressive than my own parents, a product of 70s, would call me a few days later….
“I bought some of that CBD,” she said. “I’m gonna try and give him some.”
While my uncle’s appetite had declined drastically, his taste for generic, canned concentrate orange juice had not diminished. It was his favorite drink in the world and had always been. If he was being resistant to medication, the doctors used this specific juice (and yes, he could tell the difference). My aunt always made sure they were stocked with it. So we put a dropper full of tincture in the orange juice, which he enthusiastically gulped down.
She continued doing this for two more months until he was eventually transferred into hospice.Complications still arose, but we all noticed a general increase in peacefulness from him. There were still tough days, but he slept more soundly and was significantly less agitated. Apparently she did tell the doctors and nurses that she was giving it to him (just not my mother) – and they all seemed to agree that his quality of life had increased.
When he was in hospice we’d give him CBD twice a day. I’m sure being at home helped somewhat – and at that point he was pretty much mentally gone. In some, weird dreamland.Yes, there were still panic attacks and all the other complications one can expect during end of life care, but compared to the year prior, it was considerably more peaceful. His appetite even returned for a few months, which is pretty damn uncommon during hospice.
He had always been a huge fan of Henrix and the Who. One day I noticed him singing melodies from “Hey Joe” and even the synth line from “Baba O’Reily.” I had an old ipod nano and filled it up with all of the music that I knew he liked. Maybe a couple hundred songs or so. He put up a fight when I tried to put headphones on him, so I grabbed an old pair of speakers and put them next to his bedside and hit play on the mp3 player.
It’s hard to really explain the feeling of what happened. Peacock orchids and white dahlias,tokens of a moonlight garden, lined the room as the gentle sunlight of an overcast day seeped through the windows. But as the music played, from within the dark pool of his mind came the memories. Like a flood. The music stirring water which had been still for so long… like a deep ocean tremor.
My aunt walked in… he remembered her name – from a time when they had first met. He held her hand and asked why she was crying, telling her there was no need to be upset. They talked about movies and of music, even of politics and of her frustratingly conservative and unapproving father. He even mentioned that he had fixed a radiator leak in her car. The remaining fragments of memories, suspended and long dormant, now rising from the deep, dark pool.
He paused and looked at me. “Dave!” he said, “What you are you doing here?” She replied to him and explained that I was not Dave, but Dave’s son, his nephew.
“That’s Sam. He’s someone you love very much.”
“Ahhh, yes. I most certainly do,” my uncle replied. “Dave’s done well. Really well.”
Conversations like these were nothing new. But they’d become increasingly rare, especially since hospice. I always found myself personifying his memories, as if they had their own unique spirits. Like the feelings that inhabit a time and place. Sometimes they would rise to greet us,eventually descending back down in the dark pool. A place where ghosts wait to be forgotten.
The end came peacefully. Throughout it all we maintained his CBD regime and continued to play him music. Eventually he became vegetative and we were able to put headphones on him.The music played indefinitely – and if one were to walk into his room, you’d notice his soft smile.Like a candle gently glowing, burning nearer and nearer to its base.
Soon his remaining ghosts would depart. But the memories we shared with him are still ours to keep. Our own ghosts to hold until we meet our own journey’s end.