Friday, February 19, 2016

You Can Always Depend On Memory People

The things I depend on is a very long list. Everyone I come in contact with on a daily basis, for example I depend on one way or another.

If I'm in our local store and hand the clerk $20 for a gallon of milk, all they would have to do is say "have a good day" and I would be on my way.

Not realizing I have change back. That is just a small example of how I depend on others around me.

Your loved one does too. Whether they tell you about it, or whether you even notice it, they do.

You can't help but depend on people and things. My iPhone for example. Most peoples cell phone is hardly out of their hands during the day.

Checking emails, sending texts., snap chat....whatever that even is. You can ask Leeanne Chames our cells are our lifeline when it comes to Mp.

We are a 24hr. 7 day a week operation here. One or both of us have to be available at all times. For things that are way too technical to go into here.

But there are important things we need to be aware of. We have things on here that are literally life and death issues. Our phones, when not at home, are our lifeline to Mp.

But having dementia, I tried to think of what all I am dependent on. The list is endless. I have heard the stories from some dementia patients who think or say they don't need anyone or anything.

This of course is a form of denial. As humans, some of us take it as a sign of weakness to show that you need someone or something.

All of that goes out the window with dementia. If you don't depend on someone, you still do. In other words, even those in the deepest denial depend on someone to do countless things for them day in and day out.

It goes with the disease. I have always been an independent thinker. I still can do that to some extent. Some of my ideas or take on things are certainly not everyones, and they shouldn't be.

In the beginning I was one of the strongest proponents of the Alzheimer Association. Over time, and years, this has changed. I found out they to are dependent.

Dependent on your money. Donations. They say for research, yet we never hear about the outcomes of any researches. Never hear just where all this money goes.

I hate it when anyone takes advantage of anyone else. Some of the organizations we rely on, are indeed dependent on you for one thing and one thing only. Your money. My money.

I have long said that a lot of these donations go for administrative purposes. As in payroll, perks, exotic vacations and luxury hotels for meetings.

What I want is simple. What I depend on is even more simpler. I depend on the people who say they have our best interests in mind, to do just that.

Sadly most don't. This world of dementia is a billion dollar industry and everyone wants a piece of the pie. You would be shocked at some of the per diems that some of the speakers at these conferences are getting.

Tens of thousands of dollars. For maybe a forty five minute speech on dementia. Something they read from. A teleprompter, or notes in front of them.

I have done dozens of speaking engagements myself. Difference is only once was I ever paid and that was from a Medicine of College talk that I did two consecutive days.

When you do what I do, share your story and then you somehow find yourself getting or demanding speaking engagement fees in the tens of thousands of dollars, who in their right mind think that the person you are listening to, depending on, has your best interest?

They don't. Same way with some of these seminars you hear about. These retreats some will call them. Some of these things cost companies thousands of dollars to send their employees.

And almost all of the speakers there depend on the same thing. They depend on power points, and notes. Not a one talks from experience, or from the heart for that matter.

What I am trying to say here is that not everyone who you depend on has your best interest. Your family of course does, or should. But even then some family members the closer the end comes all they see is dollar signs.

When you are a dementia patient you do depend on so many things. And even those who you depend on to give you good solid advice, in the end don't.

They tell you what you want to hear, what they think you should hear. Every celebrity who has ever had dementia is a perfect example. For whatever reason we depend on these people for advice.

We see them and think, they can do this and so can I. Problem is again what you are depending on is not what is happening. There isn't a celebrity dealing with dementia that deals with it like you or I do.

There just isn't. They don't live payday to payday, or Gov't check, to Gov. check. They don't worry about affording medications, or being able to afford placement.

They don't know the heartaches we know daily. They will however experience grief. We all experience that. The next time someone is in a position to give you good information about dementia, try to remember, are they telling me what I need to hear, or what they want me to hear?

You will only get what you need to hear on MP.  We don't sugar coat anything. We don't paint some pie in the sky idea that this will be okay. Nothing about dementia is okay and never will be okay.

And trust me, you can depend on that...

©  Rick Phelps 2016