Broken (and Unbroken) Promises

I made a promise to myself that I’d post something at least once a week and already it’s broken. Cannot believe that.

The past two weeks have been busy, but, frankly EVERY week is busy. A lot of it is my seeming inability to focus or keep organized. What the heck has happened to me? I used to be so sharp. I sometimes wonder if it’s just stress or early dementia. Probably stress, but I still worry.

I shouldn’t still be so stressed and depressed from the past year and my parent’s deaths, but I am. I still have many, many loose ends. My coping mechanism has been to ignore it and I cannot ignore things any longer. It's only prolonging the misery.

My biggest current stress is and will continue to be, probably for the rest of my life, my brother. It’s difficult to even describe him in words.
J is “retarded”. You can say he’s “Developmentally Challenged” or whatever else is the current PC term, but when he was a kid he was tested and diagnosed and was labelled “retarded” and he’s been that ever since. There is a term for what he has (Prader-Willi Syndrome), and he has classic syptoms of that condition, but it wasn't even identified until he was out of school!
It’s difficult to describe him without writing a book, but remember the Baby Huey cartoons? Every time I see my brother I think of Baby Huey; he’s shaped just like the character, he’s slow and clumsy, and he works so hard trying to get people to like him, only alienating them further in the process, and usually resulting in their making fun of him or saying mean nasty things. I have witnessed rudeness, ignorance and cruelty of people towards him since we were kids. It was always so difficult for me when I was a kid, loving him, wanting to protect my “little” brother, while at the same time being a bit embarrassed and just wanting him to be “normal”. As an adult, he often does things that make people look at us, but I’ve come to accept him and the heck with ignorant people!
Just last week, he was eating at Burger King with my husband and a woman came up to him and asked if he’d had enough to eat. They were minding their own business, just eating and barely even speaking to each other even, but it’s difficult to miss my brother and he was eating his “normal” meal. (He usually gets both large (or super-sized) french fries AND onion rings, with a minimum of two Whoppers.) That still in ABSOLUTELY NO WAY justifies or explains why that woman said that. My husband just sat up and glared at her. My brother thought she was “flirting” with him!

For his entire life, my brother has lived with our parents in the same house where he was raised, sleeping in the same 8’ x 10’ bedroom. Officially, he did not exist. My parents never claimed him as a dependent, the only time he ever contributed to Social Security was when he worked in school, and the few times he’d go to a doctor, they’d pay in cash. My mother refused to apply for any assistance (ie. Medicare or Medicaid) for him, always afraid “they’ll put him in an institution.” His entire income has been from a paper route or doing yard work for neighbors, which did nothing but keep him supplied with McDonalds hamburgers. Three years ago, my husband and I got him SSI and Medicare/Medicaid. He lost the Medicaid when our dad died because his $700/month SSI income disqualifies him. Can you believe that in the DC area, $700 is over the allowable income for a handicapped adult?

I share some of the blame as well. Not so much when we were young, I was a kid too and had enough to maintain a normal growing-up experience when the neighborhood kids knew I was "The Retard's Sister" and with the constant disruption his behavior created in the home. BUT I could and in retrospect should have been more insistant that my parents do more for him. I never did until the past couple of years when my own children got old enough to not require much from me, and it because obvious I was going to have to assume responsibility for him very, very soon.

In addition to being “slow” my brother has significant speech difficulties. To compensate, he talks loud. Or should I say LOUD? He also suffers from an insatiable appetite. He will not stop eating until the food is gone. ALL THE FOOD is gone. If you have something on your plate, he’ll ask for it. I’ve seen him eat until he throws up and then keep eating. Because he also is very clumsy and has never understood his size and strength, do I have to tell you the shelf life for anything breakable when he’s around? It’s impossible to miss him when he’s in a room, or store, or whatever. This is very typical of his condition, but it doesn’t make living with him easier.

It may not sound like it, but I do love my brother. It's hard not to, but, again, it doesn't mean I want to live with him. And should I add that all this is complicated by the fact that he absolutely hates me? When you consider his point of view, it's perfectly understandable. Growing up, I got good grades when he failed. I got tapped for honors and recognitions and went to college on scholarships, when he was bussed off to “retard school”. (That IS what the neighborhood kids called it.) I married the wonderful son-in-law and built the "beautiful house in the country" when he never left home. I had the two adored grandchildren when he had none. He has a LOT of resentment and who could blame him. Also, he has this laughingly warped sense of machismo. He’s strong coz’ he’s a man. “Girls” are weak and stupid. I doubt he’s ever seen a “girl” scream at a bug, but he thinks we all do! While he recognized our parents as authority figures, I’m his contemporary and I’m a GIRL. Because our mother also never hesitated to express her fears that he’d be sent to an “institution” around him, he probably has real deep-seated fears of whatever that is. Now that both our parents are gone, he must rely on me. And I have the power to send him to “an institution”. He has always had difficulty controlling his anger (another classic sympton) and although right now is doing remarkably well, he's a time bomb.

My husband and I worked hard to try to prepare him for our parent’s passing and to reassure him that we'll always be there "for him". We also have been teaching him some basic skills like how to fix simple meals and do his own laundry. It means he has some pink underwear and eats too many TV dinners, but he’s taking care of his day-to-day needs and he’s really proud of that. My dear hubby has been designated his guardian because of his distrust of me, but I now own his house and what money our parents left is under my control. He knows that. I have no plans for ANY of it except to provide for his care but he'll never understand that.

Gee,I certainly didn’t mean to write all this and certainly don’t want my blog to become a pity me place. But this is something that is a MAJOR issue for me right now and I’m not certain how I will cope with it, without it destroying my own life. AND this is the first place or time I’ve tried to write down or describe what I’m dealing with. I'm immensely thankful for all the great things in my life, but I have real (and I believe justifiable) concerns about the quality of my life, now that I have responsibility for my brother. I could write much more describing my concerns for the future, but for now, I deal with it all day-to-day.

It's the best I can do.

Quote for the day:

I used to think I was indecisive, but now I'm not so sure.