Saturday, January 30, 2016

When Donating Research What Your Money Is Used For

Donations, What is your donation being used for?

Wounded Warriors under fire. Looks like Trace Atkins will be looking for work. Seems they are taking in more than they are giving out. The CEO of WW makes $491,000 a year. Some young dude who is milking the system.

How can any organization be taken seriously when the CEO is making this kind of money? The answers you get are, "the salaries are in line with the rest of the CEO's in this category".

My answer is, then they all are making too much money. I am the CEO of an organization that helps tens of thousands of people everyday. Myself and the COO of the non-profit keep things running smoothly with the help of our Administration team.

What we do changes lives. Neither of us have taken lavish vacations, have an expense account, have a company car.

Better than that, last year, and every year since we have become a non-profit 501C-3, our salary was $0.00.

What is going on here is fraud. The same thing goes on in almost every non-profit. It is in a way a license to steal money.

Just to name a few more non-profits who's CEO's make millions:

Alzheimer Association CEO., Harry John's makes $2,731,016.00 in compensation. Think about this the next time you write a check to the Alzheimer Association for a donation.

CEO of Goodwill Industries makes $3,206, 088 in compensation. Think of that the next time you take your clothes to the goodwill.You donate to his business and he sells your items for profit. Quit giving to this man.

Marsha Evans, CEO of the Red Cross gets $651,957.00. Seems like the disaster business is booming.

UNICEF CEO Caryl Stern gets $1,200,000.00 plus all expenses which includes but is not limited to a Rolls Royce.

Nancy Brown, CEO of the American Heat Association gets $1,443,000.00 a year. Heat attacks are big business.

John Saffron, CEO of the American Cancer Society gets $1,404,000.00 a year in salary.  Chemo is expensive.

Brain Gallagher CEO of the United Way makes $1,272,000.00 a year.

Now, here is a list of non-profits where the CEO's make $0.00:

The Veterans of Foreign Wars.

The American Legion

The Salvation Army

The Disabled American Veterans

Make a Wish Foundation

Ronald McDonald Houses

Saint Jude Research Hospital

Memory People, Inc.

There are huge non-profits that their CEO's do not make millions of dollars.

Think about the salaries of the ones who make millions of dollars before you send your donation out the next time. If you are fine with sending the Alzheimer Association a donation knowing that the CEO makes a cool $2.7 million dollars a year, more power to you.

Our organization, Memory People, Inc. has no one on their payroll. We have no perks for the executives. Every dime that is donated to us goes to help keep Memory People™ the site that it is.

I pains me to know there are dozens of CEO's bilking the very people who donate to them.

Do you really think you donation to the Alzheimer Association goes to research? If so, then that is great. But, who do you suppose pays these salaries? And for every CEO making this kind of money, you have hundreds of people under them getting paid enormous wages as well.

You send $10, $20, $50, or $100 dollars to the AA, you can bet that money is used to make payroll. This is not a slam on the Alzheimer Association, they are just doing what many other non-profits are. Taking advantage of the system. Because no one is every held accountable.

Who in their right mind agrees that the CEO of Goodwill Industries is worth $3.4 million dollars a year? For what? Taking your donations of clothes and other items and selling them for his profit.

What a gig this clown has. But he is not alone. And the sad part is, no one pays attention. No one cares. You just give because it is the right thing to do. Sadly, your money is not going where you think...


© Rick Phelps 2016

Wednesday, January 27, 2016

Learn From A Dementia Patient, They Live It Everyday

Two of everything. I have even been accused of having several of just one item. And, it's true. I just don't have one of many things, usually I have two or more. Some people may refer to this as OCD.

The reason I do this is simple. This disease effects me so for whatever reason I think I have to have more than one thing. I have done this for decades, have something then go out and buy the very same thing.

I didn't know why back then, but I do now. My brain tells me for whatever reason that I need another of what ever it is.

For example, I'll bet if you took all the flashlights I own, and lined them up I would have no less then ten. Probably more. I have flashlights in ever conceivable location. I have two in my jeep, at least. Four at the camper, at least. I have who knows how many in the garage. There are two that I know of under the kitchen sink, one in the bedroom, and on and on. No one needs that many flashlights. No one.

I have four garage door openers. It came with two. One for each of our cars, but I had to have the security of knowing I have more than one, so I bought two more. One more would have been sufficient. But two sounded better.

Utility knives. I'll bet I have six of them. Screwdrivers, countless. The list goes on and on.

I probably have 20 extension cords, I have two hedge trimmers, and we don't have any hedges. sigh.

The point I am trying to convey and explain is with this disease there are all kinds of things that you have to deal with. The reason I want more than one of something is I always am losing things. Always. The chances of me losing a hedge trimmer I'll admit are slim, but I need two. sigh.

So if you loved has a tendency of having more than one thing, whatever that may be, there is a reason for that. And its called dementia. That is not to say that all OCD people have dementia, but dementia does bring on OCD tendencies.

This disease is much more than memory loss. That is what is most prevalent, but there is so much more to dementia than just memory loss.

One thing I am struggling with now and have been more than usual is noise. And that means anything at all. TV, radio, traffic noise, the sound of a drill, the sound of anything is sometimes just too much for me to take.

This is one of the reasons I personally avoid crowds. It's not the only reason, but it is the main reason. If I am around two or more people I cannot decipher what is being said. It all sounds garbled to me.

If one person asks me a question, and a simple one I can usually answer it. Not a two part question, than I am good. If someone asks me a question and there is just someone else talking, I cannot concentrate what was just asked.

It's like I am having to do two things at once. Listen to what the question was, and then remember it, then answer it, and hopefully no one else says anything. Think that isn't hard to do?  It is.

It's normal to be in two, three, or more conversations. We do it every waking moment of our day. If you are getting the kids ready for school, you not only hear what each are saying or asking, but you know exactly what the hubby is wanting or needing as well. And...you know exactly what was just on the radio or tv. It's called multitasking.

People do this everyday and don't think a thing about. Dementia patients cannot do this. Yet we are asked to or people just assume we can, because it is something we all have done since being a young child.

I just wanted to touch on this topic. I think this will answer some other questions as well. I have long said that when you think a patient is hoarding things, they really aren't.

What I mean is, to hoard something, say a banana or whatever, one would have to take the banana and put it somewhere with the intentions of getting it later. Dementia patients don't do this. They don't take something and hide it for later. Later is not in their vocabulary for one.

And you would have to know that you are taking this banana for the soul purpose of having it later, and like I said, later doesn't play into a dementia patients equation.

What they are doing, in my opinion is putting things where they think they belong. Here at our house we have found skillets in the freezer, we have found saran wrap in the clothes basket, we have found cereal in the refrigerator.

All of this and much, much, more happens because I put things where I think they go. I am not hoarding the cereal. I am not hoarding our skillets, or saran wrap.

I simply put them away when I done with them, and I put them where they go. I don't think about it, it's normal for me. It isn't a subconscious thing I do. I know exactly what I am doing. I am not in a trance of some sort. I put things where they go.

The issue is, they don't go there. Obviously. So this thing you will hear about patients hoarding things, really isn't hoarding. If you believe this, that is fine. There are plenty of people, high standing people in the dementia world who will tell you that patients do indeed hoard things.

My answer to this is, they are simply wrong. Just because someone has been doing speaking engagements or working with dementia patients for years does not make them an authority on dementia.

You know how you can tell some people are less knowledgeable than they want you to believe? Titles. If they must give you their title, or their accomplishments, this is a dead give away they really aren't as smart or as educated on dementia as they would want you to believe.

Now this isn't everyone, and if someone disagrees with me on certain things, that doesn't mean they don't know what they are talking about. They do at times.

Here's a good rule of thumb to remember. Would you rather hear some advice from someone who studied dementia, has written books on it, been of the speaking engagement circuit? Or would you rather here information from someone who lives this disease, day in and day out? Say, a patient?

If you get the chance always, always take the latter. Up to a certain point a patient is indeed who you want to listen to. In time of course that will not be the case.

There will come a time when I post something and Leeanne Chames will be like, "alight Rick, you may want to step away from you computer." Trust me that has happened already. lol

So, keep these things in mind. Not because someone who studied dementia told you this, but because you heard it from a patient. You will always get better info from a patient. We are not experts, but we do live this disease everyday of our lives.

©  Rick Phelps  2016

Monday, January 25, 2016

The Will To Live , The Will To Die

I have to give me two cents here. It's about the will to live or the will to die. First off, no one should in my opinion tell anyone it's alright to die or it's time they can go.

There are a lot of things I hope to hear when my time comes, "It's alight to go" is just not one of them.

Why? First of all it doesn't make sense. No one can will themselves to die. It just doesn't happen.

Sure there are stories about how Dad held on till the oldest son was there by his bedside, from the Army, or whatever.

What this is is timing. Coincidence. The son made it before his Dad died. This is a beautiful thought, but it is just that. A thought. For every story like this there are dozens of stories where the person dies alone.

When someone dies, its because their heart has stopped beating for whatever reason. Could be a massive heart attack, could be a massive stroke, a aneurism, could be complications from dementia.

But whatever the reason, your heart stops every time. When this happens you will die.

I am of the belief that God knows when you will be born and he knows when it is time and you will die. It isn't a random thing to me. But again, this is my take on dying.

The notion that you can whisper in someones ear and tell them it's alright to die or go just sounds good.

One cannot will themselves to die. That just isn't medically possible. If it was, there would be no need for suicides.

This is nothing more than one of those feel good articles and I get that. Of course everyone wants the son to make it to Dad's bedside before he dies, or they want the Mom to be surrounded by family when she goes.

The truth is, a person takes their last breath when their heart ceases to function and no matter who is in the room, who is around, they will die.

When you read stories about someone not making it to the beside of the dying person, you will hear, "Well, it was meant to be", or "They didn't want to put anyone thought that.".

All I am saying and this is my opinion backed with some very good common sense is that people die when their heart stops.

I have taken thousands of people to the emergency room in my 24 years of EMS, some clinging to life. Granted, some have lived through the injuries I have seen. But many have not.

But there are the ones that simply are not going to make it, no matter who is or who is not around. Or no matter if it was their time or not.

You get a horrific head on car crash of 100 mph plus and likely no one walks away. It doesn't matter their age, they heritage, their lifestyle, the religion, none of that matters. I have seen people live from horrific injuries sustained be it in car accident or whatever accident..

However, sometimes the injuries they sustained are injuries that were not sustainable to life. Period. This happens with illnesses as well. There comes a time for everyone that you simply won't be able to go on. Nothing or no one will change this.

My theory has always been, whoever comes up with the idea to take food away from me, do not feed me anymore...this person whoever it is should quit eating that very same time. And don't eat again, till the person that they are denying food succumbs starvation.

See if it is euphoric as those who tell you it is. My guess is its not. But the simple truth is no one knows. No one has came back from a near death experience and said, "That wasn't bad. I wasn't hungry at all".

Why? Because once again no one knows this. And thats my two cents. My wife and I have made our wills and power of attorneys out, so there will be no denying food for me. There will be many disagree and that is what makes the world go round.

I do know, that is just isn't possible to will yourself to die. That simply isn't medically possible. No matter which side of this you are on. It's fine to think that, or to claim that a loved one waited to die till someone either was there or wasn't.

I just don't want anyone whispering in my ear, "It's alright to go now"...that will be decided by the person I pray to everyday. No one else.

Friday, January 22, 2016

Informing Caregivers What Your LO Was Like Pre Dementia Is Important

"Who is this?"  I often wonder as I spend time in nursing facilities or dementia units, does the staff who interact with the patients actually know "who this is"?

Every dementia patient has a past. Just like everyone does. But how many times does the facility, or anyone for that matter know who this person was before their diagnosis?

I can imagine a facility where there are patents who were avid golfers once upon a time. A facility where they have past school teachers. A place where more than one patient played some sort of musical instrument in their day.

The thing is these people, everyone of them had a life before this horrid disease started ravishing their mind and body.

I am not living in the land of Oz here, I realize that there is only so much time in a shift, and only so many staff members helping these people. No one has the time to sit down and talk about old times for a half hour or so.

But what would it hurt if the staff or anyone who comes into contact with the patient just mention something to them about what they did and how proud their family must be of them.

Will they hear it? Will they understand? Some perhaps. Most, not likely. But it takes nothing but a little bit of time. Just that extra little something to say, "Good morning Miss Janice, one of the best school teachers to come out of Hillstreet School system."

Let them know, that you know that they were somebody, that they are somebody, and you know about their past.

When staff ask me what can be done to help make the patients lives here more tolerable, I ask them, "What does your staff know about each patient?"

Do they know anything about them? Do they know their first names, or what they like to called? When their birthday is? Maybe what town they grew up in?

All these are just little tidbits you can say when interacting with these folks. And the thing is you can do this everyday. Because of their memory loss they will never realize you asked them that yesterday or even just minutes ago.

It may just raise a sparkle in their eye for just a tiny second. It may make just the smallest of grins come across an old tired face. They may just sit there and stare blankly into the wall.

But the thing is, it doesn't cost a dime. It doesn't take but a minute, and perhaps, just maybe it will reach them.

Staff members need to do this. Family members need to do this. We all need to do this.

Leeanne Chames and I Skyped yesterday like we do about three times a week. I went back and watched it. And I saw something. I saw a man I hadn't seen for sometime. I saw a man talking about who he was. What he had done in his prior life before this disease took everything from him.

I watched as he talked about working in law enforcement. I could see a spark in his eye I hadn't seen in a long time. He was reliving what he was, what he had done, what he loved to do.

It was only a few minutes, but he was there. The man I knew. The man who told everyone we would get through this. I saw no darkness in his eyes, I saw him talking and sharing stories. He was so proud.

I hadn't seen this man in a long time. Even the man in the mirror looks strange to him. But there he was yesterday. In all his glory. Talking to another wonderful friend about who he used to be...

©   Rick Phelps  2016

Wednesday, January 20, 2016

You Meet One Dementia Patient, You Have Met One Dementia Patient

"How is it some patients can do things my loved one can't do?"

We have said many times that every patient is different. You meet one dementia patient, you have met one dementia patient. They all are indeed different, just as we as human beings are all different.

What happens is very normal in human behavior. It's called jealousy. To  be blunt. It's not really jealousy, what it is is the fact that family members see someone who was perhaps diagnosed after their loved one was and they for whatever reason want to know how this is possible they are doing much better than your loved one. It's the "it's not fair syndrome"...

They don't think or realize that every patient is effected by dementia differently. Every patient is diagnosed and has had dementia for up to ten years prior to that diagnosis. They just didn't get dementia the day they were diagnosed.

And, no one knows, nor ever will know how fast this disease has spread with anyone. In other words, I was diagnosed six years ago this year. I had issues some five years prior to that. So I conceivably could have had dementia some ten years before my diagnosis easily.

Some will tell you that this disease starts in the frontal part of ones brain, then in time progresses. How fast it progresses and to what part, no one can tell you that.

So, if I have had dementia that long, then why is it I can do the things I can do, and maybe your loved one cannot get out of bed?

Why is that? That is the burning question. And this answer is easy. There is no answer. Not now. May never be.

Once again, the brain is the most complex organ in the body. No matter what you hear, or what any Neruo tells you, they haven't a clue as to why this disease does what it does.

How do I know that? Because I am a patient. This is not a guess I have. I live it. The best advice I ever got was from the first staff member of the Alzheimer Association when she came to our home about two weeks after my diagnosis.

She said, change your lifestyle. Now. Not in a few days. Change it now. And we took her advice. I stayed away from stress as best I could. I retired from EMS. I took one day at a time. Not worry about what six weeks, six months, or six years would bring.

I remember asking her, "Why is I can remember some things, yet other things, things I should know, I just can't?"

Her answer was simple. But it was so very important. She told us that night that I can, and may retain things that I am passionate about. It could be people, it could be events, it could be locations. It could be anything I am passionate about.

The one thing I was passionate about, and am to this day is bringing awareness to this disease. That explains why I can post the things I do. Now, that is an explanation at best. She doesn't know this. No one does.

But this is what the studies show. That some patients, and not all, but some patients can keep their faculties about things they are passionate about.

Here's the kicker. I loved to read. I lost that. I can no longer read or understand anything over three paragraphs. Haven't been able to since way before my diagnosis.

So, that blows that theory out of the water. Meaning, not everything you are passionate about, you are going to be able to do. My brain, no matter how passionate I was about reading simply won't allow me to do this anymore.

I can live with that, deal with that. Or I can sit around and complain about it. Just as some patients may no longer be able to walk, to talk, to eat on their own. Whatever it is. There is just things that you simply cannot do and never will be able to do again.

Being in Law Enforcement and EMS for over 24 years I had to do reports. Daily. Sometimes all day long. And these reports were seen by very important people. These reports had the potential of putting some people in prison for life at times.

They had to be accurate and they had to paint a picture. The people that would see them, the Prosecutors, the Judges, whoever, were not there. I had to put them there.

I was very good at what I did. And for whatever reason I carry that on today to some degree. Many times people want to know how that is possible.

How can he write like he does. How can he have the thoughts he does. How can he run this site of over 13,000 people. How, how, how???

The answer is easy. I can write still. But it takes me a lot longer than any of you imagine. You see my posts and think I just did them. This one for example I started two days ago.

I then have someone like Leeanne Chames or my wife proof read them. Not always, but most of the time. Why? Because I sometimes wander off topic. Why? Because I have dementia.

There are days I can't put two thoughts together to save my soul. There are days I can't even figure out what is being said to me. There are days I would just as soon stay in bed.

No one sees that side of me now. Not anyone. There are things that I deal with that my wife don't even know about. But the bottom line is, I can have a thought or two, I can string a couple of sentences together. I can do many things still.

And what I can't, I let go of. I can have a cup in my hand and be headed for the kitchen and by the time I get there to get another cup of coffee, I have no idea why I am even in the kitchen.

I can stop a sentence in mid stream and not have any idea what I was saying. I can not tell you have the time the names of our dogs, even Sam at times.

I am angry. I am lonely. I am afraid, and yes I cry.  I am not what people perceive me to be. I am a dementia patient. No better, no worse than anyone else dealt this awful hand of fate.

I do what I can to share how this disease effects me. I have for years now, and I will continue. To tell my story. To tell our story. For those of us who cannot.

But trust me. There is no dementia patient who has it easy. Nor is there a caregiver or family member who is dealing with this daily who is doing great.

That just doesn't happen. I may be able to do things now your loved one can't. I may not know my own name six months from now. Anyone who says different is just telling me what they think I want to hear, or they are ignorant of the disease.

Not ignorant people. Just ignorant of what dementia is, and how it effects each of us differently. It is my job to try to help change this stigma. And that is what it is a stigma of dementia.

And I will, try to change this. "While I Still Can..."

P.S.

Did you know that the person who put pen to paper on the book, "While I Still Can..." fought with me ever step of the way. From the title to using things in the book that simply were not true to bring "drama" to it.

That wasn't done. And if I knew then what I know now, he would have never been involved in my book.

Why do I bring this up? Because I remember it. All of it. Why? Because I was and am passionate about what I do. He thought he could use me, tell me what to do. It didn't work. The book is indeed every word of my own.

Leeanne and I are collaborating on another book as we speak. What I am dealing with now, what she is dealing with working with me, how Phyllis June is handling all of this now...and much, much more will be in the new book coming soon.

It will be a page turner. And it will be all true, not dramatized. Not one bit.

© Rick Phelps  2016

Wednesday, January 13, 2016

Changeing Stressful Relationships

There have been many posts over the past few weeks, months, and even years about some of the absurd things other families will go to make your life living a hell.

We all have them. The ones who are never around, and yet know everything. The ones you couldn't please if you tried.

We have them in our family, and the strange thing is it has always been these few who seem to stick together, through thick and thin. One will lie, the others will swear to it.

Back in the day, or back before I was diagnosed with Early On-Set Alzheimers, I let their nonsense roll off my back. Didn't give them a second thought.

They were and are drama queens. It's always about them, and they do nothing to help anyone. When something happens to them, they always add their own flare to so its much more dramatic than it would be if they told the truth.

They would never consider helping you in anyway when it comes to the issues of caregiving. Yet, like I said, they are like the Michael Jordon of caregivers. Have done it all.

What to do with people, family...like this. I can tell you what I did. And this doesn't mean that anyone should follow suit.

When I was diagnosed one of the things everyone who was important told us that I had to stay away from stress. Stress of any kind. I would have to retire from my career. I would have to make changes in my life starting immediately.

And they were right. Most people can and do put up with a lot, especially from family members. Well, that for me was about to change.

I ignored the ones who thought they knew everything. That worked for a couple of years than it happened. They did something that my wife and I neither could put up with. I won't go into details, but it was horrendous and no one should treat another human being as they were treating this one.

We have washed our hands of these people. And we are better off for it. They are never going to change. They have been ignorant their entire lives and what one doesn't think of the others do.

What I am trying to get at is, when you have dementia you simply cannot put up with the nonsense. The stress that some family members will bring to the table.

You as a caregiver and your loved one as a patient are under an enormous amount of stress just dealing with dementia. Throw in a couple of drama queens, a liar or two, someone who knows everything and does nothing, and those who just live to make your life miserable and you have a recipe for disaster.

Some of these can be brothers and sisters. Some can be parents. Some can be cousins, or just good friends. But whoever it is and however they have been, after one is diagnosed with dementia it all changes.

I simply don't have the time nor the inclination to deal with some people. I would never go out of my way to be mean or hateful to anyone. But when we have endured what we have from these people, we had to draw the line.

Now when or if we see them, they look the other way. Which is good. I suppose they know with my track record they really don't want to push what has happened.

You cannot change people. And if they are family, that makes it even worse. Your number one concern is for your loved one. And if you are a caregiver God knows this takes up 120% of your time.

You can try to sit these people down and be rational about your feelings and how they are treating you, but the bottom line is, most will never change.

Again, I am not promoting family break ups here. I am saying that when I was diagnosed and since then, things have changed. I was told I need to stay away from stress, which is almost impossible.

What they mean is, keep your stress to a minimum. And drama is not what anyone needs. Sit back and think to yourself, "What has these people done for me anyways? What have they done to make this journey with me or my loved one any easier?"

Most answers will be the same. They have done little, to nothing. And in all honestly they have made the situation worse by their childish ways.

Again if you can come to where they understand that it has to be your way, they that is a good thing. Chances are they won't. They are not capable. If they were they would have changed already.

Change your life for the better. If that means making changes with the people who are in it, well so be it. You will be surprised how much better you will be. With all the negativity out of your life.

You will still endure stress. Just not stress that is brought on for no unearthly reason....sometimes it just takes someone saying, "It's alright to say what you are doing to me is not right, and I am not taking it anymore".

© 2016  Rick Phelps

Tuesday, January 5, 2016

Dementia Patients "Suffer" From Sleep Deprivation

What's more unpredictable than the weather? We hear this all the time. You can't depend on the weather. Here in Ohio the ongoing joke is if you don't like Ohio weather, just wait, it will change any minute.

What's more unpredictable than the weather, dementia of course. Those who aren't effect by it will never understand. Those who are, be it a patient, family member, caregiver, or just a friend will know what I am talking about.

All the ribbons, all the walks, all the Dementia Awareness months is not doing anything. You really have a be a patient to understand the dismay when it comes to how little is being done to combat this horrible disease.

I suffer as others do, many things. Now, some elite expert wants to take the word sufferer out of the equation. Another colossal blunder. This is how far we have come in the fight against dementia.

Don't use the term "sufferer". It's no wonder I sometimes get a bit testy when I hear these things. You have to be a special kind of stupid to think by not calling me a "sufferer" I don't suffer. Or any other patient doesn't.

It's absurd. What I am battling now is sleeplessness. I have always had issues with sleeping, but the last few days have been extremely rough.

I went to bed about 11:30 last night. Was wide awake at 1:10am, and got up at 2:15. One cannot realize what this does to you. You have memory issues, stress, bouts of anxiety, and then on top of all of that, sleepless nights.

The only good thing about this is Phyllis June doesn't need to get up and watch me. Thank God. To those caregivers who have to get up with their loved one, you too know what I am talking about.

When you don't get enough sleep, everything is effected. Starting with your cognitive ability, which for the most part is already horrible. I will have to have Phyllis June call my doctor and get a stronger sleep medication, or I will have to take more of what I am on.

This two, three, four hours sleep nightly is getting to me. I remember my doctor saying you will sleep when you are sleepy. That all sounds well and good, until three in the morning, night after night.

I hate to complain when many others are suffering, yes suffering far worse than I, but I tell you, when you can't sleep it really effects every thing. Which like I said is already not going so good.

©  Rick Phelps  2016