If You Were Going Blind…

And you knew it, what would be the one thing you’d really like to see before you couldn’t anymore? Tough question, isn’t it.

I’ve been following www.furiousball.com for a couple of years or so. Van is a wonderful guy and a good read. (Go there. You’re welcome.) But this post http://furiousball.com/inmydiatribe/index.php/2012/07/20/seeing-this-through-for-jim/ got me all weepy. (Van will do that to you without meaning to, trust me!) It got me to thinking about my Uncle Brad and his journey with Retinitis Pigmentosa. If Brad would have had the cognitive abilities and the communication skills to tell us that his vision was disappearing over the years, maybe we could have taken him to see something wonderful to him.( I know what it would have been. Michigan. Brad found out his Grandparents immigrated from there and since then, it’s been U.S.A. all the way! His most prized possessions are a Michigan hat and map.) Alas, we never knew.

But Jim http://jimmeck.com/ does. And as I sit here, typing and teary, I think, “How awesome and wonderful that he has a chance to prepare, to see something he can remember forever.” While there is not a thing I can do for Brad, maybe I can help get Leafs tickets for Van, Jim and Bubs.

So here goes. Canada and the Toronto Maple Leafs: We’ve gone from 6 Degrees of Separation down to 4.74 http://www.nytimes.com/2011/11/22/technology/between-you-and-me-4-74-degrees.html. That means I need to go through just a bit less than 5 of you to be able to get tickets! They are in TO the week of 11/26/2012, and the Flyers/Leafs game is the 28th. So pretty please, if anyone can help out, let me know. Or Van. And I thank you.

Why am I doing this? Helping a stranger?

Why not? 4.74 degrees isn’t much. We might be able to do something very cool. And Van always seems to pay it forward.

Now, my Ducks. The tough question. If you were going blind, what would you like to see before you couldn’t anymore?

Love to you all.

xxoo

Different, Not Less

I feel obligated to write this. It may be different from everything else of mine you’ve read, but it needs to be written. And I need to purge.

A while back, I wrote about my Uncle Brad. https://onlyoddduck.wordpress.com/Brad If you’ll remember, he has cognitive impairments, autistic symptoms, hearing loss, and now is going blind. I saw him briefly at Christmas. This is his story, in honour of him. This is also a cautionary tale and a call to arms for anyone with a loved one who may be differently- abled.

My grandmother did the best she could for Brad. There wasn’t the knowledge and expertise that there is now, 30 years ago. She moved off of her beloved farm into the city, just to get Brad a bit more help. As I’ve said before, he never was given a concrete or specific diagnosis. I recall once, when he was in his teens, a diagnosis of “Emotionally Disturbed”. To me that smacks of Autism, yet also makes no sense. Like I said, we’ve learned a lot.

He lived with his mom, went to school until the age of 21. He had a job at a recycling depot. He was functional. He wasn’t “one of them”. I think my grandma’s mortification possibly prevented him from getting more assistance and training in life skills. But I don’t begrudge her anything. She did the best she could with the knowledge she had at the time. Plus, he could be so “normal”. He was just Brad.

Then she died. He was 33. He’d never lived on his own and had only ever had his family for support. What now?

He tried to live on his own with my mom and dad for support. I’d help when I could, but I lived in another city an hour and a half away. I remember, he would obsessively clean the house after work. It was as if he thought if the house was clean, he’d be seen as capable and could stay there. Yet he’d wash a dish and turn the faucet on all the way to hot, so hard, he would have to phone my folks to drive over and turn it off. Once I found him trying to clean something off of a table top with a screwdriver. Brad also couldn’t sleep through the night. His OCD would have him getting up at all hours, to check that the door was locked.

It finally came to a point that he needed to live in a group home, for his own safety. The town where he lives found him a spot in a new supported living group home. The operator of this home had no qualifications or training, however she had a daughter who was schizophrenic. Apparently this qualified her to get money from the government and have 4 extra disabled folks living in her house. Now, here’s the interesting thing.

Did you know that if you have a mentally disabled person living in your house, you get less money than if you have a mentally ill person living in your house? Yeah, me either.

Brad has always told himself jokes. He’s always talked a bit under his breath to himself. It’s part of who he is. I tell myself jokes all the time. I talk to myself all the time. But because of this woman’s ‘expertise’ in mental illness, she decided to convince a psychiatrist that Brad was delusional and having auditory and visual hallucinations. That he was potentially dangerous. Just like that, he went from being disabled to being a mental health patient.

And his group home operator? She got herself an extra $700 dollars a month. He was put on pills. Lots of them. In the psychiatric industry, we call them chemical restraints.

He was drugged when I’d go to pick him up. To the point of bladder and bowel control problems. He was dirty. His clothes were filthy. As I was working in mental health at the time, I about lost my mind. He moved. As fast as we could do it. As an aside, that lady? She ran her home unimpeded until she left town several years later.

In the last 10 years, Brad hasn’t been unmedicated. I believe he is still under the psychiatric umbrella. He now lives in a group home that is very well staffed, clean and comfortable. He’s well liked and well looked after. He is a different man than a decade ago, but for all intents and purposes, he is happy. He still tells himself jokes. But the people who care for him make him speak up so that they can hear.

The point of all this? When I saw him at christmas, I realized that he is aging far more rapidly than you and I. He will need more care than can be provided to him, sooner rather than later. All that is available where he lives are regular long-term care facilities. I’ve worked in them. It will be absolutely the wrong place for him. Trust me when I say the chemical restraints will just get tighter. A drugged, bedridden patient is much easier to care for than one like Brad.

My folks are aging. He lived with them as long as he could. They haven’t the stamina to have him back. Their health should be their priority. Rightly so.

It falls to me. To that end, a couple of years ago I started phoning around to see what steps I needed to take. I was told by a lovely lady who has made this her life’s work that it was going to be an uphill and unhappy battle. As she put it, “In this country, one province does not want another province’s retarded people”. She told me that I would probably not be able to get funding for him here and that to the powers that be, it was my problem, not theirs. She also told me to never move him into my home, because I would never be able to get him out. Meaning, if this government knew he was here, they would move at a snail’s pace to keep him here. Not their problem, right?

I’m not sure what will happen in the future. My husband and I have discussed it. We both understand that having my Brad rotting in an old folks home 5 hours away would be unthinkable. My mother knows it, too. She also knows that when she passes, I will be his voice.

Here’s my voice. We must remember that above all, anyone with a disability or disorder is not less human than we are. They are to be accorded the same dignity and treatment without question. We must realize that family, who are most often advocates for those that can’t speak for themselves, will pass on. As a human society, we must protect these folks in their age, as we would want to be protected. We must demand that there are facilities for the aged that are specifically designed for people who are mentally disabled. Psychiatric hospitals are not the answer.

I’m so tired of knowing of people who’ve slipped through the cracks. I’m so tired of worrying. I’m tired of people being labelled as nothing. He is my loved one. He is my Brad. He didn’t do anything wrong. He’s here. Just like your loved ones.

We need to get our governments in this game. Before it’s too late.

“I am different, not less.” Temple Grandin