An Undiagnosed Autistic, I discovered my situation when my grandson was diagnosed and my daughter phoned me and said, "Mom I know what Dustin has, and you and I have all the symptoms!" I grieved the loss of the hope of being 'normal'. But later I decided that I was my own kind of normal. I write to encourage other autists and to promote the unique advantages of being autistic..
A caregiver’s respite is not always a person. Sometimes it’s a place.
I love thrift shops. I found a Goodwill Shop just across the 88th Avenue overpass from the Tulalip Casino.
Poker is a pastime Chris can still enjoy in spite of the pain in his legs and the trouble he has walking. There is little exertion involved. We drive there and he walks a very short distance, then sits for hours. The cards keep him completely focused for a while.
Usually Chris comes out ahead, and I have no interest in the slots, so I leave him for a couple of hours and go browsing. Lose myself in thrift shop debris.
Knick knacks crowd the shelves like society’s detritus, faded fairies and angels, capricious kittens and puppy dogs, slightly worn picture frames, various vases and dolls showing various stages of wear. Cheap imitations of Dresdens and Doultons.
After poker, Chris comes to meet me. He picks out a white-bearded fisherman with joints at the knees. Obviously meant to sit on a shelf.
I buy another ten books. He’ll be in surgery soon, so I’ll get to read them in hospital while he sleeps. And they are cheap here; less than half what I’d pay in a Canadian shop.
The white bearded fisherman will be on the bookcase to welcome him home. An omen, if you like, that Chris, too, will still be here when his hair turns white.
When we made our purchases? I guess we were both thinking of his Friday surgery.
When we were married, it never occurred to me that one day I would be his caregiver!
We were married late in life. Chris worked in sales, had three children and I was a twice-divorced single mom with three teenagers. I worked as a dispatcher in Cablevision, making union wages.
Over the years we changed residences and jobs often. The kids flowed between parents and our lives were fairly chaotic.
In 1991, Chris was diagnosed with diabetes. We had our own businesses then, but it became obvious a change was needed. I went to work for the government in Vancouver.
In 1993, still in sales, he had his first heart attack. He’s had angioplasties almost every year since.
In 2000, Chris started a painting business. In 2004 the business was booming and we bought a big old house on half an acre on Surrey’s Panorama Ridge.
In 2006 he had open heart surgery. In 2012 after a brief road trip he had two heart attacks in less than thirty days. An experimental bypass followed four months later.
The stripping of veins from his legs to use for the bypass set Chris back a lot. Walking continued to be painful making it difficult and then impossible for him to assess and negotiate jobs with prospective clients.
We downsized again to a small apartment close to all amenities. In mere months our annual gross income plummeted. Like many other people who are struck by disease or disaster, we face new challenges every day.
This blog is about how we choose to face those challenges.
My husband thinks he is going to die. This Friday. On the table. Having an angioplasti.
He hasn’t said so, of course, but he’s hinted rather specifically.
If things don’t go right on Friday, he worries.
They will. I try to sound reassuring instead of impatient.
But if they don’t.. he begins again.
Then everything we’ve been talking about for the last twenty years will fall into place, I say.
Heartless of me, perhaps, but then we’ve been having this discussion since his first heart attack in 1993, since his ten or twelve angioplasties, since his open heart surgery in 2006, since his experimental bypass in 2012.
And looking at that history? I realize I have been a caregiver of sorts for most of our thirty year marriage.
I just want to enjoy the time we have left. Live in the present. Not the future or the past.
Because after all these years, I can’t help but be aware of the fact that I am a widow in waiting. And a guilty part of me does look forward to a life where I will not be second guessing anyone, where I will be the focus of my day, my money, and my life.
But that is not my focus now. My concern now is to get him in and out of that operating theatre with confidence. So I’m going in absolutely one hundred percent positive that everything will be fine.
History repeats itself, right? Pray God it does tomorrow, too.
Happiness is not something that occurs on its own when there are no bad things happening. It is our ability to find joy amidst the tragic, to add colour and life to the mundane, to find meaning in maintenance. Suzanne Clydesdale.
Chris brought in the New Year saying the rosary. Around twenty after twelve I woke. Looking at the time, I turned and hugged him and said, You made it! You made it to 2015!
People often express sympathy for me, caring for a loved one who is leaving this world. Sympathy is not necessary.
You see, Suzanne Clydesdale is right about finding “meaning in maintenance”. Being able to take this journey with someone you truly care about? Is a gift, not a burden.
Not that there aren’t problems or concerns. But there is growth, there is recognition. There is a new and fresh perspective.
I see how precious my own health is. How much it needs nurturing. How a healthy body is a key to a happy and productive long life.
I realize how forces beyond our control—genetics, environment and other external forces—can change our lives in an instant. And that realization fills me with knowledge of the beauty and frailty of every moment of our existence.
I see how love encourages, refreshes, comforts and challenges us. How words and actions, no matter how humble, how common-place, can make an amazing difference in someone’s day.
Dying is a journey, and I am watching someone bravely advance in that journey day after day. It is my privilege to be at his side.
If I did not want to be here, then I would need your sympathy.
This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.
Caregiver Me 