Friday, January 2, 2015

Memory People, A Support Group For Today

From time to time I like to explain what we do here on Memory People™. We are of course an online support group. 
But that is where it just about ends. We are no where near close to what the classic support groups consist of.
In most support group settings, the first thing you will see is handouts. Support groups are known for handouts. 
We don't do handouts.
The second thing you find in your classic support groups are readers. You always have a facilitator that reads to the group. 
If not reading some sort of hand out to you, they rely on power points to get their "point" across. 
We don't do power points and we don't read to people. 
Then you have the endless mundane talk of how much a cure is needed, and that one is in fact in some cases only a couple of years away.
We don't do mundane, and we don't do claims of cures. 
This is why there are certain organizations that for the sake of argument think they have the market cornered on support. 
They do not.
Here on Memory People™, we stick to things that will help you get through today. Not next week, next month or next year. 
We could go on and on about a cure coming, but is that going to help you get your Dad in the shower today? Is that going to give you an insight on why Mom no longer likes to take rides in the country? 
Or is talking about a cure going to make you a better caregiver? No. The only thing that will help you be a better caregiver and give you the support you need comes from other caregivers. 
All too often support groups are facilitated by people who have never cared for a dementia patient. They can read to you, they can tell you what they know about dementia, but in the end, what you need to hear, who you need to hear it from is actual caregivers. 
Many times people ask, "Why is it you never hear talk of a cure here on Mp?"
I always tell them there are literally thousands of sites here on Facebook and on the internet where you can read for weeks about the latest concoction coming down the road to cure dementia.
You won't see that here. We don't do cures. If you think about it no one does. There are those who think they have all the answers, but in the end it all adds up to speculation and what you personally believe in.
In my mind, I am a realist. I know without a doubt a cure is not in my lifetime. If a cure was found today, it would take years, possible decades to perfect it, make sure it does indeed work, and for the FDA to approve it.
That is the truth. But you can read where they are going to have a cure by the year 2020. I say good.
But in reality I say, lets talk about what we can do today to make my day better right now. Not what is coming. Not what someone found out by testing some lab rats.
You won't find many support groups like ours. Most are there to tell you what you want to hear. Most will never tell you that your loved one is indeed gong to die a slow and miserable death.
They, for whatever reason would rather try to sugar coat things for you, spoon feed you an bunch of nonsense, and then when the going gets rough you have absolutely no idea what to do, because you have not planned for the inevitable.
Right now, you can find places on the internet that will tell you that dementia can be cured, and sometimes all it takes is to eat healthy, or exercise, or some other off the wall idea.
All the heath food in the world is not going to cure your dementia or slow the progression of this disease. All the exercising is not either. That again is hard to hear, but it is the truth.
You can rehab some things, but not the human brain. This again is something you won't likely here in a support group setting.
If you think by eating healthy this thing called Alzheimers is going to slow down or even be cured, then you are sadly mistaken.
Alzheimers is a disease of the brain. The most complex organ in the human body and any neurologists worth their salt will tell you they are no closer now to finding a cure then they were ten years ago.
But, you see, telling people what they want to hear is a lot more politically correct then telling them what the truth is.
The Gov't does it all the time. And so do big Corporations. You can spend tens of thousands of dollars on some so called cures. And in the end you or your loved one will succumb to this horrible disease.
Accepting that is the challenge. And no one has to accept this. You can go on living in a world where all is fine and all will be fine.
But the day you come to the realization that this disease is fatal, there is no stopping or slowing the progression and you will die from it...is the day you will find peace.
Take today and make it be the very best day you can for you and the one you care for. Look for advice, things that will make this journey better for you and the patient.
Not every suggestion you will get here on Mp will work. Some may work today and never again. This is because your loved one has a disease. A disease of the brain.
It's much more than forgetting things. Matter of fact, forgetting things is the least of ones problems. It's what happens because patients cannot remember, that matter.
Lives can be literally changed forever because of one not being able to remember something and what happens because of it.
So, what we do here is support. But we are interested in getting you through today. Not next week, next month, or next year. There simply are no guarantees with dementia.
You can find sites that will tell you everything will be alright. That you will be fine. No you won't. There isn't anything alright about this whole thing, and there never will be.
The only guarantee is that Alzheimers is a progressing disease, that you will die from.
People want answers. They want to know why this is happening and what can be done to "fix" it.
Live for today if your a patient. And do the very best you can do if you are a caregiver. There are no answers, and there is no fixing this.
Sugar coat that. You can't...