Are you a carer? Do you ever feel sick to the back teeth telling people (social workers, psychologists, physiotherapists, occupational therapists etc…) what exactly would help you and the person you care for? Have you read books and watched documentaries to find out as much as you possibly can about the particular disability until finally you don’t want to know any more for all the knowledge you have gathered hasn’t really helped anyway? Do you feel that your case is so well documented it probably has its own room in the social worker’s office?

Apparently many people who care for others are isolated because of the situation that they find themselves in. So they don’t know about the things monetary or otherwise that they may be entitled to. Social workers are there to make sure that these people don’t miss out.

Carers (in my experience) are not stupid people, as a general rule they do know what they are entitled to, or they know about most of the things that they are entitled to. What happens though is that entitlements to make your life easier are trickled down to you gradually, not necessarily when you need them but sometimes when you are starting to come to the end of your tether, they give you something just to keep you going. That way they give you a little hope that things are ‘getting sorted’.

Getting services of any sort is usually a never ending round of meetings and discussions with mostly the same people who reassure you that they support you and they are going to write a report.  In between these meetings you (the carer) are left to deal with the stress, the physical exertions, the coping from day to day.

As a carer you’ll probably find that living from day to day is probably your best option. If the person you are caring for is severely disabled you will probably find that getting proper services in place for them is more difficult (because of their disability).  You will be at a high risk of mental health problems such as depression. Being a carer is not a good career move and is not a lifestyle that most people would chose but is probably best described as the lifestyle that chooses you.

As a carer you will feel isolated helpless alone and at times misunderstood and underrepresented. Your life and the life of your charge soon becomes undervalued with every meeting that you have with a group of social workers, health care workers and educational specialists. These people will sit looking well groomed and clean while perhaps you fell out of bed that morning (because you didn’t get a decent nights sleep the night before)  and had to rush barely having time to wash your face or comb your hair. In getting everything organised to attend this meeting you probably didn’t have time to eat something and your stomach is probably growling and your head is pounding.  At this meeting they will tell you the usual “that they are working on getting a care package in place.” They can then go back and write up their reports and pass them on to be read or ignored but they have done their jobs.

In the meantime the carer struggles on from day to day with what little help they have in place. Carers  become adept at making do and in many instances give up the struggle to get some of the ‘smaller’ things and try to focus on the main and most important aspect of a care package that will make a profound difference to their life and to the life of the person they care for.

Instead of being the person that the social services are supporting the carer becomes the one supporting the social services, after all without carers’ social services wouldn’t need to have so many needless and pointless meetings (McVities biscuits would probably go out of business).

Sometimes people might say to a carer “You don’t work, or you’re unemployed” as though you don’t know what it is like to get up at six am. They get up (maybe very early) and drive to work then don’t get home until maybe six o clock that evening. Once they have their tea their night is their own to prepare for the next day or to relax. The carer sometimes doesn’t notice the day starting or ending and they are disinterested in what is happening in the outside world because they are so tired, they are bone tired. Some carers cannot remember the last time they just sat and read a book or watched a film without being interrupted. A carer doesn’t have set hours and is expected to always be there for their charge. They feel that responsibility more keenly when they start to realise just how ineffectual social services are.

If you are a carer you may try to look at your life with a sense of humour, after all laughing at your predicament sometimes helps! Though sometimes it may be a struggle to laugh and sometimes when others are laughing about some of the little calamities that beset you. You can’t help wanting to say. “There is nothing soft or comforting or funny about my life”

Apparently carers are, or suffer from a sense of isolation from the rest of society. I don’t think it is as simple as that. Carers may feel a sense of isolation and ‘dislocation’ from the rest of society but I think that carers don’t just feel isolated; I believe that they feel invisible. As time goes by and they don’t get the services that they need (never mind deserve) their self worth suffers. As even more time passes and nothing changes (except maybe to just get more difficult) carers not only lose their self worth but start to look on themselves and their charge as a lead weight on society. It is as if living in this caring compassionate civilised society; that really doesn’t know what to do with them, they hear the whisper “You are dead weight, you are dead weight”. That some carers succumb to suicide does not surprise me at all. To feel that you are nothing but a drain on an overstretched health service must do something to the individual. They must have some sense of losing their own sense of personhood. In suicide they become a part of a small statistic, no more a hassle or a worry to their local social services. A service that can carry on in its own ineffectual way, business as usual pass the Mc Vities.

There is a certain sense of irony that with all our scientific discoveries and innovations our health service have become so sophisticated that many people who once upon a time would most likely have died due to the health problems that they are born with now survive. The social services perhaps find themselves overwhelmed and under funded. Also there does not seem to be a clear strategy of how society should deal with children that are born with severe learning difficulties. The onus seems to be on the family to look after them for as long as they possibly can. (When it is no longer possible for families to continue with care these children, now young adults are put into secure units, they are probably confused and frightened not having the full understanding of what and why these things are happening to them). All these events, the caring and then perhaps the feeling that you are abandoning a child puts an incredible strain on the family as a unit and as a result every member within the family will suffer in some way. That most people will not shirk their ‘duties’ to a disabled member of the family is for the most part recognised. That the family don’t get the support that they deserve and need and that many family units disintegrate because of the lack of support and pressures that they are under I think is also recognised. It is the shame of the ‘caring compassionate’ society that we have become.

Are you a carer? originally appeared on A World of Progress TeamZine on March 13, 2010.

That’s 50 cents an artist! The MAP and Black Mountain College Museum are throwing a fete you don’t want to miss. This is an outstanding collection of all kinds of great artists:
“On Saturday, March 20th (the first day of spring), the original grounds of Black Mountain College host an event showcasing over 30 artists from [...]

30 Artists – 15 Dollars originally appeared on A World of Progress TeamZine on March 12, 2010.

This is a commercial that is actually promoting a product from Pedigree called Dentastix — but it's hard to resist laughing at these dogs with dentures!

Dogs with Dentures originally appeared on A World of Progress TeamZine on March 12, 2010.

GoogleAVL
Fill out a Community Application (seriously – it’ll take you five minutes).
Come out to Asheville’s Google Fiber Initiative Town Hall meeting on March 18th at 6pm at the Asheville Civic Center Banquet Room.
While some may argue the virtue of diminutive pipes and the value of Charter, this is also a thread for everything else under [...]

Friday Open Thread: Great Googly Moogly originally appeared on A World of Progress TeamZine on March 12, 2010.

The Carnegie Institution of Science released a new study this week finding that one-third of the carbon dioxide emissions developed countries release into the atmosphere result from goods and services produced outside their borders. The report’s details are troubling: Carnegie’s researchers estimate that 2.5 tons of CO2 per person are consumed in the United States but are produced elsewhere, and that figure spikes to 4 tons per European. Another point that will cause considerable disagreement among global climate negotiators is Carnegie’s analysis that one-quarter of the emissions in China are actually the result of its exports to its trading partners such as the United States.

Global Trade’s Dirty Secret: Outsourced Emissions originally appeared on A World of Progress TeamZine on March 12, 2010.

The White House is finalizing rules on the first U.S. greenhouse gas emission standard for automobiles, which would raise average fuel economy 42 percent by 2016 in a bid to slash oil imports and fight climate change.

The Environmental Protection Agency and the Transportation Department sent the final rules this week to the White House’s Office of Management and Budget, according to a notice posted on the OMB website.

The higher mileage requirements will reduce U.S. greenhouse gas emissions by 900 million metric tons and save 1.8 billion barrels of oil over the life of vehicles built during the 2012-2016 model years, according to the EPA.

US EPA to regulate Green House gas emissions from cars originally appeared on A World of Progress TeamZine on March 12, 2010.

The White House is finalizing rules on the first U.S. greenhouse gas emission standard for automobiles, which would raise average fuel economy 42 percent by 2016 in a bid to slash oil imports and fight climate change.

The Environmental Protection Agency and the Transportation Department sent the final rules this week to the White House’s Office of Management and Budget, according to a notice posted on the OMB website.

The higher mileage requirements will reduce U.S. greenhouse gas emissions by 900 million metric tons and save 1.8 billion barrels of oil over the life of vehicles built during the 2012-2016 model years, according to the EPA.

US EPA to regulate Green House gas emissions from cars originally appeared on A World of Progress TeamZine on March 12, 2010.

His eyes light up when they land on me. He walks toward me quickly and then abruptly halts when he is six feet in front of me. His eyes dim to doubt. He’s just not sure.

I smile at him reassuringly. “Hi, Uncle Lenny,” I say. “It’s me. Maria. Jack and Fiona’s girl.”

He beams, shakes his finger at me. “I know that,” he says as if this was all a joke. “You’re Maria. Jack and Fi’s girl.”

He hugs me, pats at my hair. We move to a leather sofa. We sit down. He holds my hand and looks deeply into my eyes.

“So,” he says, with finality. “So, I guess I’ll just follow you home then. Yes. That’ll work,” he says, snapping his fingers as if acknowledging a good idea.

“No, Uncle Lenny,” I say as gently as I can. “You need to stay here and take your medicine.”

“Maybe in two weeks?” he asks, looking hopeful.

Yes, I tell him. Maybe then. I lie like a rug, knowing that he will forget everything and ask the same question in twenty minutes.

My Uncle Lenny has Alzheimer’s disease. He’s had it for the last three years but my Aunt Dottie has been able to care for him at their home until last month when I was visiting and noticed that their whole house smelled like shit. Aunt Dottie admitted, tearfully, that he’d been defecating and urinating in his pants and then swatting at her when she tried to clean him up.

Uncle Lenny is a small man, only about 5’3 and weighing in at 110 pounds. Aunt Dottie is even smaller than he is and no match for him when he gets combative. So, she reluctantly agreed that it was time for him to go live in a nursing home that specializes in caring for Alzheimer’s patients.

This man, my Uncle Lenny, saw my Aunt Dottie at a dance when she was 20 years old and engaged to another man. He courted her persistently and with great passion until she consented to call off her engagement. They married four months after their first kiss. Days later, the Japanese bombed Pearl Harbor and he joined up to fight with all the other men in the city. Dottie was pregnant but didn’t know it yet when he left her at the train station downtown. She moved home with her mother and had the first of their four daughters while he was in Italy, fighting.

Lenny came back in one piece, thank god, as Dottie says whenever she tells their story. He took a job as a janitor at the med school and they bought the house that they raised their family in and that Dottie still lives in today. Their house was the fun house in our family. They had the best barbeques, the best tooth cracking cold beer, and the best homemade pies. When Lenny retired from his job forty years later, he was the head engineer at the school and the only human who could coax the furnace to behave on bitter cold winter days.

I just knew him as my favorite Uncle Lenny. He smoked incessantly and bought Aunt Dottie such risqué Christmas and birthday gifts that she refused to open them in public.

Aunt Dottie worked at an ice cream parlor for their entire marriage. Uncle Lenny swore that they’d never divorce because she never failed to bring him home a carton of black walnut ice cream every Friday night. He swore that this alone was enough to keep them together forever.

Uncle Lenny was a butt pincher and a smacky neck smoocher with Aunt Dottie. She spent lots of time swatting at him with kitchen towels and telling him to go jump in the lake and leave her be already.

“Oh, woman, you know you love my sweet kisses,” he’d croon at her and dance her around the kitchen, dipping her expertly in a doorway.

Now, he sits alone in his room and holds my hand. He shares a room with a man who doesn’t speak; his face remains motionless all day long. It smells faintly of urine in this room. His closet is full of jumbo boxes of pull up diapers.

He talks randomly about churches he likes, how the gravy at dinner gave him a bellyache. He points to a photo in a dark walnut picture frame. It is a photo of him and Aunt Dottie, their arms wrapped around each other, standing in front of their 50th wedding anniversary cake. Candles flicker across their faces. In the photo, he is not looking at the camera but smiling adoringly at his wife.

“That’s my sister,” he tells me, bobbing his head up and down.

I tell him, no, that that is his wife, his Dottie bird. Doesn’t he remember that this is what he used to call her?

No, he says firmly, frowning at me. He’s never married, been a bachelor his whole life. He mugs flirtatiously at me and I fight the urge to stand up. Before I can think of a proper answer, he reaches over and hands me my coat.

“You go first and I’ll follow you,” he tells me. “Just go up that hill and then turn left. It’s time we went home, Mama.”

I don’t say anything. Instead, I gently stroke his arm until he calms like a kitten under my fingers, his eyes drooping as he succumbs to his urge to sleep.

I look down absently at his arm, the same arm that I used to swing on during our big family vacations to the cabin in Minnesota. His head lolls back and he is deeply asleep, his mouth wide open, his whole face slack. I settle a blanket around him and sneak out of his room.

I meet Aunt Dottie in the elevator going down to my car as she is coming up. “How’s my feller doin’ today?” she asks me after planting a big wet kiss right on my lips. I tell her that he’s fine, resting comfortably. She thanks me for visiting him so often and we hug goodbye. She squares her shoulders, pastes a smile on her bright red lipsticky lips and heads off to find him. I go out to my car and get in, smiling as I look in the rear view mirror at my lips, which are now as red as hers. When I was little, I used to beg her to give me a kiss so that I could share her lipstick.

I sit for a long time in the car before starting the engine, my head against the steering wheel. And then I turn the key and head home. Without Uncle Lenny.

Uncle Lenny doesn’t live here anymore originally appeared on A World of Progress TeamZine on March 12, 2010.

Forbes released its richest people in the world list this week, and, to no one’s surprise, they are getting richer. Yes, my friends, there are more billionaires this year than last, and they have more money.

In fact,  1,011 billionaires — out of a world population of 6.7 billion people — hold more than half the world’s wealth.

And Forbes doesn’t think there’s anything wrong with that.

I do. I think that’s just crazy, and the root of a helluva lot of the world’s problems. So does Sam Pizzigati.

Let’s narrow things down — to Southern California’s Orange County, proud home to nine of the world’s billionaires, and that’s not counting Warren Buffett, who owns a vacation place in Laguna Beach.

Orange County’s nine billionaires, says Forbes, are sitting on personal fortunes worth a collective $28.2 billion. The half a million kids in Orange County’s 27 school districts, for their part, are sitting in considerably more crowded classrooms, after $500 million in budget cuts over the last two years.

In Capistrano, the second and third grade class size has jumped from 20 to 32 students. Last week, another school district in the county scrapped summer school for sixth and seventh graders and high school freshmen and juniors.

The United States, Forbes editor-in-chief Steve Forbes told a news conference last week, “is lagging.” He wasn’t referring to classroom cutbacks in places like Capistrano. He was referring to America’s declining share of the total global billionaire population. In America today, that’s what passes as perspective.

This sickness, of course, comes from the capitalist idea that we should all do everything we can to make as much money as we can. I’ve asked twice now why anyone needs billions, and no one has answered, probably because the answer is “They don’t.” Imagine what just a little of that money could do in the world, and the billionaires would all still be rich.

But we can’t do anything about this incredible disparity, you see, because it would just destroy the free market, and if we destroy the free market, then we’re all doomed. Me, I’m not much of an economist. I just know when something is fucked up. But Badtux, the Snarky Penguin, is also an economics penguin, and he’s been saying some really interesting things about the free market lately.

Rather than try to explain it all myself, and muck it up, let me refer you to Badtux. This, my friends, is recommended reading.

First up, there’s The Free Market Fairy hates healthcare. Then, there’s Pay day lenders and competition. Next, On the other hand … , and finally Efficient markets and the Chicago school.

I have no idea how much more Badtux has to say in this vein, but I advise you to check him out regularly. Or just watch the Recommended Reading section in the Politics sidebar.

The rich keep getting richer originally appeared on A World of Progress TeamZine on March 12, 2010.