April 11, 2014
I just went through a heart-rending experience, and for those of you who have a relative or friend going through Dementia, you’ll understand very clearly.
As usual, I write and make art to help myself work through something difficult. Art journaling… this is a great way to deal with stuff, and to process it, since there are no rules, and the visual cues are far more powerful than just writing alone.
After much thought I figured I’d share this journey with you, which I posted to Facebook as I was going through it.
Feeling very sad. Cried when I saw a video of my second ex husband posted by my stepdaughter of the two of them in the care facility he’s in. He’s lost to Dementia brought on by repeatedly having hit his head violently and suffering brain damage. I’ve lost two exes in less than six months and we were all supposed to enjoy our grand-kids in the years to come.
Even though we were at odds with his methods, all he wanted to do was to have his screenplays made into films so he could give to his family and to have his years of efforts justified.
Now that’s all gone.
Makes me question the value of working hard on a dream.
Makes me question the value of my own dreams… I’ve put my book out there and I question why I continue to try to market it if it won’t help anyone??? Is it lunacy to have a dream or a mission that may not be ful-fillable?
What if I were the only one to see any worth in it? What if all the time spent on it was wasted because it is not a good product and I’m the last to see it?
These are all the questions I’m asking myself as I struggle with this issue. I may just be depressed now or I might have had a moment of insight.
Leaving a legacy… a good dream or just lunacy? My ex lost his chance to find out… or maybe the harsh truth is that it takes a lunatic to try to do it and another lunatic to believe in them?
I’m grateful to live with my family and to be able to hold them close.
Driving to Lake Wappapello so I can sit by the water and try to figure out my fractured thoughts and to try to pull out of the nosedive into depression.
I passed the same homeless man I passed twice on the road yesterday. He has his entire life’s possessions tied in plastic bags ballooned all around his bike. He straddles it and shuffle-walks to his destination. Yesterday he was heading into Poplar Bluff. I bought him a bacon club burger meal and stopped by to give it to him. I felt compelled to do so.
I know many people kindly helped my ex when he was on his epic drives. I wonder what broken dreams this man has carried on his shoulders as he does his shuffle walk to another town? What memories drive him forward that he can’t stay still?”
I arrived finally at the lake, and a little lizard greeted me from his spot on a rock on the pathway. I made my way down to the rocky shoreline, found a good chair-size rock and sat down to write on a paper I had in my art bag, one that I had rescued from a fellow artist throwing away her unwanted charcoal shadings and onto which I’d painted in watery acrylic paint over.
There were water blotches on it, the color perfectly reflected my mood, so I proceeded to write in a black pigment pen my thoughts:
“I sit here by Lake Wappapello, I am sad. Today I’ve cried.
I’ve cried because I saw a video of my second ex-husband, trying to sing along with his daughter. This wasn’t the face of the man I married, or even of the face of the man I divorced. This was the face of a man lost to Dementia.
LOST TO DEMENTIA
I cried. This is the first death before the final death. The death of dreams of having his screenplays made into films. The death of the obsession to do it at all costs.
The price he has paid through his life to realize his dream. The price I paid in loving him & believing in him. The price became too high so I left.
Now he is paying the ultimate price of losing his mind. Rare moments now when he knows his daughter’s name, or when he can hold a conversation and be in the moment.
The alternate reality his mind has constructed – a place where he is on set daily and making his films. He tells the doctors and the nurses what he’s doing on set everyday, not even seeing that he’s not on set.
I cried because that chapter of my life is over, but he doesn’t know it yet… …maybe he never will.”
I posted my thoughts and the image of the work onto Facebook. Since many of my postings don’t usually receive a glimmer of a comment or a like, I have no idea if anyone even reads them. Yet, I felt a need to be heard even if it was the winds of the Universe.
Apparently people do read what I write (!) and while I was still near the lake, sitting in my truck, ready to head back into town, my daughter called me. She comforted me, and spoke the words I needed to hear.
She reassured me that I hadn’t wasted my time writing the book, pointed out to me that it is already helping some people. She said I had managed to balance my art and writing with the rest of my life, that nothing had been done to the extreme, and that I hadn’t sacrificed my family along my quest to fulfill my dream.
Those were the words I needed to hear.
I think when we go through such an experience of seeing someone we know succumb to Dementia, it brings into question so many deeper issues in life.
It did for me anyway.
(Particularly since the years we spent together were intense,
and many times other-worldly. I think one day I’ll write a book about it,
based on the journal I kept during those times.)
Questions which came up in my mind were of whether a life has been lived well. Questions of how closely we parallel someone else’s life, or how different we might be.
Then there is the mourning. Mourning for so much time having been spent chasing a dream. Mourning that the fruits of those efforts will never be tasted. Mourning that the family had been put through so much while he lived his quest.
Whether anyone agreed with him or not, or whether they liked him or not, he found a way to live life on his own terms.
Now he’s not the same person, for the fire and the drive which defined who he was is gone. He’s confined in a locked facility for the elderly. Locked up by people who are afraid for him if he’s allowed to roam free… which he did prior to ending up there.
Sad to lose one’s freedom. Yet for those who experienced the past year and a half before he was locked up, they are relieved he is now.
He went on an epic car drive, from Santa Fe, New Mexico to Plattsburg, New York, and back, then a bus ride to Montreal, Canada and then a car drive part-way back. Epic because at one last count he had ended up in 8 hospitals in 6 states, due to blackouts.
He roamed the country in my truck, disappearing off the family radar and resurfacing days later in an entirely different city or state, calling to ask for more money for gas and food, entirely unaware of where he was or how he got there.
I was on an ongoing group text with his kids, playing a strange game of “Where’s Waldo”, because it could be anyone of us who’d receive a call from him from somewhere along this journey.
No one could tell him not to go on those trips, he felt a compulsion to go, yet everyone was put through their own hell, never knowing if he’d end up dead, or worse having killed someone in one of his blackouts.
The usual medications given to Dementia patients are useless for him, since his Dementia was brought on by repeated blunt force injury to his head… he’d hit his head violently against any hard object nearby.
The years leading up to this point have been an emotional roller-coaster for each person involved, and so different for each person too.
I can’t say that I’ve really come to terms with it all yet, for who can? It is what it is, even though it’s very sad.
I suppose I’ll process the strangeness of it all and like I said before, the other-worldliness of our time together, when I finally sit down and write a book about our years together, for there are still some things to process.
Some people write to make money, and others to be able to put into some kind of order or sense, what they’ve lived. Perhaps it will help someone else too… at least I hope it will, for won’t that make all of it worthwhile? Won’t that be the meaning of it all? …and don’t many of us strive and hope to have some meaningfulness of our time spent on this earth?
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#On Becoming a Lemonade Maker, #Tamara Kulish, #Dementia