Sunday, June 14, 2009

"What's WRONG With You? You Got Alzheimer's??"

I caught that line of dialogue in Clint Eastwood's latest film, Gran Torino, and while it didn't upset me all that much, it did bring home the fact that however it's used, it's now a very prevalent part of our vocabulary.

I suppose it isn't really meant as an insult, and would only be said to someone close, but I can't see the name of another disease being used in its place, can you?

Oh, I know we'll use words teasingly, as in "You're such a spaz!" (spastic) or "What a Maroon!" (moron), but I don't think we'd ever hear something like, "What's the matter with you???? You got Multiple Sclerosis, or somethin'?"

So I guess the answer to the above question would be, "Yes, matter of fact, I have. Let me tell you about it!"

At that point, one of three things could happen:

1. The person one is conversing with would break out in a short, barking laugh, which will turn into a shocked look when one doesn't smile or laugh back, or

2. Their eyes will begin to glaze over as you try to explain the difference between "Early Onset" and "Young Onset" and the stages.

And there's that third thing, the one which angers those of us being treated for EOAD: Disbelief because we're not drooling or soiling ourselves. Disbelief because we can still communicate. Disbelief because, well hell, it's just easier to deal with that way!

Yes, I know: you're read this before on this blog, haven't you?

You've read my words when I tried to explain we may be confusing the lay-person with too much information, but what if it were cancer I/we have? It would be just as fatal, and just as deserving of finding a cure.

Is the difference really as simple as people try to make it: One is a disease of the mind, the other is mainly associated with physical causes? My friend Mike Donohue addresses this in one of his blog entries:

6/4/2009

I AM TIRED OF HEARING, “YOU ARE SO SHARP, YOU CAN’T HAVE IT!”

I am sharp because I am in the Early Stage of Alzheimer’s Disease (AD)! That’s the way we are. This is normal for Early Stage. When you say “You can’t have it” Though you mean well, you feel you are re-assuring us we don’t come off as bad as People with AD are supposed to look, you have to know what a put down it is.

The common misperception about people with AD is this: If you have AD you must be drooling, standing in the corner unable to find you directions out of it. Because this biased perception of what we are we are often outcasts or patronized. Please help us overcome the public stereotype of what we are supposed to be! Certainly, those of is in the Early Stage of this disease do not show it. We come off as being very normal, able to think, do a lot of remembering, find our directions, carry on a conversation and do everything else we could before we got it.

The only change is this: We have some limitations. Because of these the Health Care Folks can tell us, yes we have it, yes it will get worse, yes it will ultimately cause you to die. You can hold it off from becoming worse if you Take Mediation, Eat Right, Exercise Daily and engage in Social, Creative and Intellectually Stimulating Activity, this will prolong your stay in the Early Stage.

The put down of telling us we can’t have it is this:

• I have gone through the heart wrench of being diagnosed with it. • I have had to deal with the absolute shift in who and what I am because of it.

• I have had to accept the tragedy of what it does now and will in the future visit on my family and loved ones.

• I have had to learn to live with the ultimatum this diagnosis serves. “You have a terminal disease, one in which you mind goes by degrees followed by your body inching its way to death that is the absolute end result.

• I will suffer this emasculation: While I have it I will need to depend on others more and more, I cannot now do everything else without the help of a caregiver, which will become more and more of a need as I progress to conscious oblivion, helplessness and death.

This is no exaggeration! Thank God I come off as good as I do. I still have a quality of life that I cherish and want to prolong.

To do this I need you to:

• Love me, love me a lot I am suffering and I need your support! Accept me as I am. Trust me, I do have this awful disease, I do not want it but am trying to make the best of it. Please don’t make it harder for me by discounting it or denying it!

• Spend time with me. I love social time, activity and the camaraderie of friends and family. I love to do things. I will be a little different, particularly as time goes by. I try to work around it, overlook it when I slip. Above all make a place for me in your lives. I need it more than I ever did.

• Tell everyone you know I have this disease and I do pretty doggone well with it. We suffer a stigma because of our disease. We are with it, with you and want to do things, like volunteer, be in organizations, and participate in everything as a normal person. We do not want to be left on the shelf or put into a warehouse as too often a day care, assisted living or nursing home has become to be for us.

With your acceptance we are more likely to get the kind of help we need, like Eating Right, Daily Exercise and having available Social, Creative and Intellectually Stimulating Activity, both organized and self provided, which along with the medication we have available will prolong us in the Early Stage.

If this can be made to happen this improves our quality of life that has been so damaged by our diagnosis. It truly assists our families and care givers because we can continue helping ourselves longer. It greatly benefits the community and the country because it will be longer before the expense of outside help or institutionalization is needed.

Mike Donohue

My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

So what are we expected to do?

Many of us have anger issues, many of us have short-term memory loss, many of us can no longer drive because of judgement issues, and all of us are behind the 8-ball when it comes to getting assistance or money for research.

Would drooling, shitting and pissing ourselves help move things along?

Sorry for the sarcasm. I know I wield it like a sword, but I passed "denial" a while back. It seems to me that much of the nation is still in that phase, and there's something very wrong with that picture when you consider that an Alzheimer's Diagnosis is made every 70 seconds.

Okay, gonna leave you with some toe-tappin' music. I fell in love with Zydeco when I first heard it on Paul Simon's Graceland album, and while this isn't Zydeco, it just as happy a genre. It is called Tejano, and "Sir" Doug Sahm was one of its founders. In the second and third videos, you may recognize the lead guitar being played by the late Freddy Fender.

Remember the critters, please!

Thanks

Bill

The Animal Rescue Site














No comments: