Tuesday, February 11, 2014

Where is the Manual for Dementia?



Where is the manual? There's always a manual. The one you take out, look over before putting together that swing set, bar-b-q grille, or trampoline.

There has to be an instruction manual for dementia caregiving. Someone has had to write one. There are over 35 million people in the world who suffer with this disease, and over 7 million more diagnosed each year.

So, don't tell me there isn't a manual. There are so many questions that new caregivers have. So many questions that patients have.

In fact, there has to be a manual for patients as well. I'm going to call the Alzheimer Association. They have to have a manual.

A manual from the time someone is diagnosed, what to do, what to get, what you will need. How to cope with things that will arise. And, what will arise, anyways?

Sadly, I have searched and called everyone I can think of and there is no manual. If you want to program you new phone, there's a manual. If you want to learn how to eat with chop sticks, there's a manual.

But when you and your loved one are given this terminally ill diagnosis, one with no cure in sight, one where there is nothing to slow the progression, and one you will surly die from, there is no manual.

Why is that? Why is it that you can go on the internet and find all kinds of things on the web about dementia, but some contradict the other. Some tell you don't drink or eat out of things made of aluminum, then other sites will tell you aluminum has nothing to do with getting dementia.

Why is that? There is no gold standard. There are no set of do's and don't that tell you exactly how to care for your love one.

You know why there isn't? Cause everyone is different who is diagnosed, cause the doctor's who diagnosis you isn't sure if they have the diagnosis right. This is why they always say "You have dementia, probably of the Alzheimer type".

There is not one thing that is constant about this disease, except the fact is you will never, ever really understand what it is all about. Not now. Perhaps someday, but were not even close now.

I get so upset when I read about dementia friendly businesses, or better yet, dementia friendly cities.

Here's the truth. You can't even get family members to agree on what course of action to take when a loved one is diagnosed. How they are to be treated, most are in denial, and you can't get anyone to listen simply because they are not living it.

And then people expect to have dementia friendly businesses, or cities? This is wishful thinking. But the reality is we are so far behind the eight ball, when it comes to awareness and getting Support for caregivers and patients.

Lets work on that. Something that can be done. One person at a time. One family at a time. I wish someone would tell me just what city it is they are talking about when you hear "dementia friendly cities".

I am all for it, but it's just not possible. Can you imagine say Wal-mart being classified as a "dementia friendly" business? They are constantly hiring and firing employees, 90% of their workforce are part time.

Can you imagine what it would cost to implement such a thing. For all their employees to be "dementia friendly"? How about Lowe's. Why not Target?

Or how about Dallas, Texas being a "dementia friendly" city? What I am trying to get at is why don't we concentrate on things that can be done. Instead of trying to re-invent the wheel here?

There is no one in a 500 mile radius of me that does more to bring dementia awareness than Phyllis June Phelps and I have. And we haven't scratched the surface.

Everywhere we have been, there is a different take on this disease. Like I said, you can't get three people to agree on some things, let alone an entire city.

I am not against dementia awareness. Anyone who knows me, knows this is true. But when I hear of such things, things that are not in any way feasible to do, it makes me angry.

Let's take this slow. Let's start with the people around us. Let's put our minds and hearts together and help each other. Just like we do here on MP...

I would love to see dementia friendly cities. I would also love to hit the lottery. Some really, really involved professional type people on the web are talking about this.

Yet, I have not heard how this would, or could be done. Training of course. And it would have to constant training because of the turnover you have in any business.

Then comes the kicker. Where is the money going to come from? Who is going to train these people? And yes, where is the manual they have to train these people with.

There's always a manual...