Friday, January 31, 2014

Dementia Aware

Dementia Aware. What does that mean. I read this all the time. Dementia Aware restaurants, public places, even dementia aware cities.

So, what is this "Dementia Aware" all about I ask myself. Don't get me wrong, I am all for anything that brings Awareness to this disease. And I applaud anyone who is trying to do this.

But the real question is, what does bring attention to this disease, and what does one have to do, say in a restaurant to be dementia aware?

I have to assume it entails some sort of training program. Some sort of guidelines when new employees are hired, as well as training the ones already there.

I like to analyze things. I know for a fact there 5,308 people here that are dementia aware. How do I know that?

Cause they deal with it everyday, day in and day out. Now, that being said multiply that times five and you get 26,540.

You have to figure that there at least five people around each member here that are also "dementia aware". That figure is large and perhaps impressive, but in the grand scheme of things it's but a drop in the bucket.

But still, what is it? Dementia Aware. Is it a training course? If so, by who? Is there a manual? Is so, where does one get them?

And how would you ever get a "dementia aware" city? The truth is we are way behind the eight ball when it comes to bringing Awareness to this disease.

Whether you call it "dementia awareness" or just plain awareness, or bringing awareness, we are in fact losing the battle.

I hear almost daily that someone's loved one was diagnosed with dementia, and they say "Thank God they don't have Alzheimer's."

Believe me, it's true. Some don't even know that Alzheimer's a form of dementia. And they are dealing with it.

I have been a proponent of awareness since I was diagnosed. There are those who do more, I suppose. But when I say "we" I mean all of us are losing this battle called "dementia awareness”, awareness or bringing awareness.

The people I deal with daily know this disease, of course. That's because I surround myself with people who do. But go outside you inner circle.

You will see we are not winning this awareness thing, matter of fact we are losing, terribly.

I can tell you, you will never get one Taco Bell, one Burger King, or one Wal-Mart to be totally dementia aware. Let alone the whole chain of these businesses.

To be dementia aware you have to be "dementia aware". It's not something you can show someone in a 30 minute video, or in some hand outs.

It is indeed a constant learning process. Ever changing, every day. In my opinion you cannot make any one person, or any one place "dementia aware". It's the people who run these businesses and the ones who work there.

And for whatever reason this is constantly changing. Employees find another job, the business is bought out by another company, whatever.

If there were the time, and resources you could teach some of these places to be dementia aware. But you cannot label them dementia aware just because.

There are people right here on Mp that don't get it. And that's fine. Half the time I don't get it either. It is like I said, constantly changing and a constant learning process.

"Dementia Aware" cities? What a good concept. But ask yourself, "How realistic is this, really?"

I have a dementia service dog, Sam. Have had him now going on two years. You would not believe the people who stop and ask me, "What's the dog for?".

On his red vest in big white letters "Service/Working Dog. Do Not Pet."

But that most times is ignored. When asked what he does I always reply "I have dementia and Sam is a dementia service dog. He helps me with things that I can no longer do."

Nine out of ten people stand there like I just told them the world was coming to an end. They have no idea what dementia is, what a dementia service dog does, what any service dog does for that matter.

And like I said, that's fine. But it’s these occasions that show me without any doubt that we are not any where close to being "dementia aware" or whatever one wants to call it.

It sounds good. Dementia Aware. But what it gives you is a false sense of security. Makes you think as a caregiver that everyone in whatever establishment you are in indeed knows about dementia.

It just isn't so. We don't sugar coat anything here on Mp...and there may be many people who disagree with me. And that's fine. Difference of opinions makes the world go round.

But as a patient who has traveled this beautiful Country of ours I can tell you where ever I have been, from Washington State, to California, to New York City, to Florida, people talk about dementia awareness.

But this takes a lot more than just talk to implement a dementia awareness location. I can tell you without hesitation and with certainty that even your hospitals that you take your loved one to are not dementia aware.

They just aren't. There are dozens of people who come in contact with your loved one if they would have to spend time in the hospital. They are not always doctors, and nurses.

You have the janitorial crew, the STNA's, the volunteer's who may come and get you loved one and take them down three floors for an X-ray. I can tell if any one in the X-ray department knows about dementia it's only because they are dealing with it personally.

So lets be dementia aware of course. But those of us who are fanning the flames for lack of a better term and claiming all this dementia awareness is going on, is it?

Well, don't tell me, show me. I applaud your endeavors. No one works any harder than me to bring awareness to this disease. But lets keep it within the realm of possibility.

Espousing to have everyone you have contacted or talked to or dealt with be dementia aware is a false sense of security to those who go there with dementia, and their caregivers.

Perhaps the business does work with dementia patients that come in. If that were true, what about the ones who come in to an establishment and no one knows they are even a dementia patient?

I just can't see a eighteen year waitress knowing how to converse with a dementia patient. Some don't have the ability to do their job in the first place, let alone add dementia into the equation.

Lets think about dementia awareness before announcing that any certain business is dementia aware, just cause someone said it is...Again, I am not pointing fingers at any one person or organization. Like the Alzheimer Association for example.

They too talk about dementia awareness. I just like to say, in my humble opinion that we are far from being dementia aware. We just are…

Thursday, January 30, 2014

Losing Control

In control. That's what everyone wants to be. In control of their daily lives. Do what is best for them at any given moment in time.

This is very thing you lose even in the beginning stages of this disease. You learn very early on that you have no control.

No one wants to be out of control, or have things happen to them they can't for whatever reason control.

This disease takes ever bit of what control you had of your life, and it's a downward spiral from there.

I learned long ago to let many things go. You have to. Try being diagnosed with a terminal disease with no cure, and nothing to slow the progression.

That will take every ounce of control out of you. What I did, and what others should do is to come to grips with this disease. It worked for me, cause I somehow have a tiny bit of control knowing and accepting what is coming down the road for me.

When I say accept it, that doesn't mean you have given up, or lost. What it means is you understand as a patient and as a caregiver what this disease is, what it does, and what is coming.

You need to plan ahead. That in itself is a form of control. When you have a plan, have another because the chances of the original plan working are slim to none.

Being diagnosed is not the end of ones life. It is however the beginning a journey that you will not and cannot control. The sooner you come to grips with this, the better off you will be.

I am losing control. I know this. But some things my wife lets me think I am in control of, and that alone brings me peace. I wish things were different.

But what I have gained through Mp, the hundreds of people I have met and talked to, I will forever be grateful for.

So even when I have no control over things, I try to find the good in everything. It's not easy. Matter of fact is very, very hard at times.

There are days I do not think I can take another step. But I do...and that alone keeps me in control...

Wednesday, January 29, 2014

Denial and dementia

It is in our DNA to want to help our loved ones with this disease as it would be any other disease.

I knew four or five years before my diagnosis there was something wrong, very wrong.

Some people however may know this but do not want any knowing it. Even their closet family members.

I remember running squad and knowing that one of the signs of a heart attack is indeed denial.

Most patients we came in contact with, unless they were having a full blown heart attack were indeed in denial.

"Are you having chest pains?"

"Are you having trouble breathing"

"Do you feel faint?"

All of these and other questions are asked to which most reply was, "No, I'm fine"

Well, they were not fine, it was obvious. What it was is that are scared and in denial.

A heart attack to most means that is the closest thing to death they will ever be.

So, you have to assess the patient very carefully cause many times they are telling you what they want you to hear.

The same can go with dementia. You sometimes have to be a sleuth of sorts to get to the truth. Even then you may not.

I was different. I knew there was something wrong, and I would tell anyone who would listen. When you are dealing with someone who is a bit older, they come from a very proud and private generation.

You will never hear them complain. Never hear them talk of their medical issues, and God help you if you ask about their finances.

So...your loved one may have been dealing with dementia for a very long time.

Statistics show that when someone is diagnosed they could have had dementia for up to ten years prior to the diagnosis.

You will know what they want you to know and not a bit more in some cases.

Choose your battles, like we say. You will likely lose them all. And remember to have a plan then have another plan cause your first one likely won't work.

Being a caregiver isn't rocket science. It's much more difficult than that

Time is My Enemy, While I Still Can




I don't have time. Anyone who has dementia has this problem. To those of us that are still in the early to mid stage of this disease we know this.

It's something we face every day of our life. Time. Time indeed is slipping away. And it is that very time that most of us can't even deal with.

Time to me is now, right now, today, this hour, this minute. I look at the clock and it means nothing to me. I look at a calendar and its the same thing. Meaningless.

"Time is my enemy". One of the things we wrote Dan Mitchell wrote in our song "While I Sill Can..."

"That's why I'm living for right now. Tomorrow just to far to think about, my heart only knows one task..."

It's that very song that tells the story of dementia without ever mentioning the word.

I wish that song never had to be wrote. I wish that this disease was indeed a memory, instead of stealing ours.

Everything you do today is because you remember and planned for it. You took "time" for it.

The very thing we as patients have all been robbed of. "While I Still Can..." began as a phrase that I used way back in the beginning of this journey.

I knew then and know now that my time is limited as to what I can/could accomplish.

Doing speaking engagements was very important to me. Time stole that from me. The same way with the video's I once did everyday. Time again stole them from me.

Writing the book, "While I Still Can...' indeed took time. I knew I had to do the book when I did, because time was escaping me. It took me over 500 hours of recordings to do the book.

Recording I had to do cause I simply could not remember from day to day where I was at in the story line.

The book itself is about my journey with Early On-Set Alzheimer's Disease. But it is mostly about time. Time I lost with family, with my friends, with my self.

I hope you have taken the time to listen to our song, and have indeed read the book. The time it will take you to do will be helpful in the care of your loved one.

I have posted here the first studio recording of "While I Still Can..." Dan didn't want me to release it, cause it was the first time he had sang it in the studio.

However, it is so powerful. Without the backup singers, and with the full studio musicians I had to share it with others. If you haven't seen it, take a minute to watch.

My friend Dan Mitchell gave me a gift in writing this song, putting pen to paper. Something I will forever be grateful for...

Monday, January 27, 2014

Ask For Help


One of the biggest mistakes made when dealing with dementia is not knowing when to ask for help.

There is nothing wrong with asking for help too soon. There are numerous things wrong with waiting too long to ask for help, and none of them are good...

Many people say "I can do this". In the end, even the best of caregivers find that they too need help.

It doesn't have to be family, doesn't have to be friends. It can be a call to the Alzheimer Association for Support. It can be finding a local Support Group.

Or it can be what you are already doing, here on Mp. Sharing your experiences, the good, the bad, and the ugly to find help or to help another.

I think that is why we are so successful here on Mp. We took a very complicated situation, as in dealing with dementia and simplified it instead of making it harder.

We don't cure anything. We can't slow the progression. But we can help you get through the darkest hours of this disease. Just knowing you are not alone helps in so many ways.

And we all will Support one another. Together. As it should be...

Worry About Right Now



Every day can be an inspiration. Will there be hard times? Of course. Will there be days and hours when you think you simply cannot continue? Yes.

Many times with this disease we focus on things that we simply cannot change. Things we cannot fix.

They took a bridge out close to us, about fifteen years ago. I along with others were so concerned that by removing this bridge many people would die because of added response time to EMS or Law Enforcement.

To this day, not one person has been put in harms way because of the closing of that bridge. But I remember as if it was yesterday, we were certain people would die.

We were focused on and worried about something that may not happen, and never did.

You have to deal in the right now. Today. This morning. Worrying about what will happen next year, or when the patient goes from one stage to another is just a waste of time.

In reality I don't know how today will go, let alone next week, next month, or next year.

You cannot fix anything. You can adjust to things. You can elevate things that will surly cause something bad to happen.

Just the simple thing or removing all throw rugs from your home can lesson the chance of a fall.

If you think things are bad now, compound what you are going through, and add in a broken hip in the mix.

Then you have real problems. A broken hip is indeed a medical emergency. And just getting through the initial part is stressful.

Calling the squad, keeping the patient still on the floor. Trying to explain what is going on, what is going to happen.

And then dealing with emergency personal when they arrive. You will hear that all EMS and public safety workers are trained in dealing with dementia.

All this is, is a false sense of security. I did both EMS and Law Enforcemet for over 24 years and I can tell you that they are not trained "properly" to deal with a dementia patient.

If you are ever in a situation where you need to call 911 for medical assistance, when they arrive treat them as if they know nothing about dementia. Chances are they don't.

So, do what you can today. Right now. Try to make things more safely friendly in your home. This isn't rocket science.

Worrying about what is coming, instead of what is already here is a mistake. A mistake you will likely pay for over and over again.

If dealing with dementia was easy for the patient or the caregiver none of us would be here. If dementia was temporary we would not be here.

If we could "fix" anything or any part of this disease, we would not be here. But we can't.

And that indeed is why we are here. And will be until the very day dementia itself is a Memory...

Saturday, January 25, 2014

Dementia, you will know something is wrong



Did you know???

I used to be work for Peabody Coal Company. I was a chemist there. Sounds way more important than it actually was.

I was in law enforcement, private security and EMS for over 24 yrs. My wife and I owned and operated a private investigation business. 

We also had a body removal business. We were contracted by many funeral hones to do in-home body removals and transfer to the funeral home, morgue, where ever.

We had many accounts, and did many out of state transfers. We employed about six people. I always thought people would say "I always wondered who did this service".

I also was an investigator for the State of Ohio for Severely handicapped people. I had a six county area here in Ohio I was responsible for. It was my job to go to the facilities, day cares, home visits and such and make sure that standards were being met.

All employees there were up to date on their training. I also was in charge of all investigations dealing with crimes against the patients. Be it theft of their meds, sex crimes, theft of personal items, abuse by staff, abuse by patients to staff and on and on.

It was while doing this job I realized I could no longer do what I could before. I was fine when it came to investigating crimes and such because I had done this for years in law enforcement.

It was indeed in my long term memory. The problem I was encountering was doing the needed reports to the State. They gave me a computer to use, which was of course a PC.

I had always used MAC computers and I simply could not learn the new format. I didn't know why, but it just wasn't going happen.

In time I went to my supervisor time and time again and explained to him I just couldn't understand how to do the reports. He said it will come in time.

Was trying to help me, but as always, he didn't understand. Six moths into the job I was total wreck. Stress over not understanding what I was doing, stress of the job in general.

At 3:00am one morning I got out of bed and was getting dressed. Phyllis June ask me "What are doing, it's 3:00am?" I told her I was taking the computer, phone, and all my reports to the office, turning them in and quitting.

That decision was like a weight had been lifted off my shoulders. Now of course I know why I couldn't understand or learn the pc format. But I had no idea then, no one did.

I knew something was wrong. Like I tell everyone. You will know if you indeed have some sort of dementia. It's not like forgetting where you put your car keys.

It's like having them in your hand and not knowing what to do with them...

Saturdays, 24 hours without anyone around



Today is Saturday. The day Phyllis June does her 24hr shift at EMS. She enjoys working there. I had 24yrs in when forced to retire, she is working on her 26th now.

Sometimes days when she is gone that long are very demanding. Sometimes things here run smooth. I rarely cook anything. Maybe fix a pizza in the oven, cheeseburger, something along those lines.

In time this just won't work. Me being here 24hrs without anyone around. For now it works. And that's what we celebrate. What works. We have prepared for that day, but we don't dwell on it.

Isn't healthy. We like to enjoy the little things that still do work, instead of worrying about what will come down the road.

So it's Sam, Rambo and I against the world today. Bitter cold out, snowing real hard, not fit for man nor beast outside today.

Someone had hit a telephone pole that is just beside our garage sometime yesterday. Sheered it to a 45° angle. The power company came out and temporarily repaired it.

I will be keeping an eye on it the next few days. If it should fall, it would indeed go right through our garage roof. Always something. Makes life interesting.

Have a good week end everyone. Stay warm, be safe. And I hope you week end is uneventful when it comes to this disease.

Friday, January 24, 2014

It is indeed about the numbers



5,259 members. Today. This number will of course increase. I remember back when I would hear almost daily that it's all about the numbers for Rick.

Well, lets just look at some numbers. Five. I think five is a nice round number, and one can assume that five is the number of people that any one member here talks to about Mp at one time or another.

Course five is extremely low, but there are some who for whatever reason may not discuss Mp, what we do here, etc.

So you take 5, then you got to figure out of them five, at least two of them tell someone also. See what I'm getting at here?

5,259 X 5 = 26, 295. Now, 26,259 X 2 = 52, 590. Fifty Two Thousand, Five Hundred and Ninety people.

Now, I would like to think 80% of these people get help from what we do here. 80% of 52,590 = 42, 072.

So...it is indeed about the numbers. We are changing lives here. We don't cure anything of course, we can't slow the progression. We don't tell others what meds they should be on, and so on.

What we do is offer Support for today. Right now. Not what might happen next week, next month, or next year. We deal in reality and the reality is what is happening to your loved one right now is what is important.

I always knew Mp would work. Not because I started it, but because there was a need. Anytime you you find something that others can use or implement that isn't being done, it generally will work.

We are just getting started here. And we have huge things in the works that we will be announcing here at a later date. Everyday we try to see what we can do better here.

What we can offer, to make someone's life more manageable. So far we're batting 1000. And I couldn't be more proud of what we have done here and what is yet to come...

Wednesday, January 22, 2014

What I do on Memory People, give advice from a patient's perspective

I need to post something. About what we do here, and more precisely what I do here.

Unless you been living under a rock, everyone knows I am a patient. And everyone knows I have at times been very blunt.

Never once have I, or would I say anything to intentionally hurt anyone or anything of that nature.

Here on Mp we deal with a very difficult thing. Dementia. All kinds. Alzheimer's being the most prevalent. But we have Lewy Body, Vascular, Early On-Set, and on and on.

What we do here is post our experiences. The good, the bad, and the ugly. And what we have done since the beginning is never sugar coat anything.

When I say "There is no cure for this disease, there is nothing that slows the progression, and there is no fix" I am not just saying that to be saying something.

It is indeed true. Sometimes this alone is very hard to hear. We have many members who families are in denial. That too creates a huge problem.

We have members who do the very best they can, and someone in their family always knows better. We have people who post about things that are happening and wanting advice.

The problem is it may not be the the advice they are wanting to hear. And that is fine. No one has to take anything I say as gospel.

What I say, what I tell you, what I go through is just me and me alone. I never tell someone, "Well, this works for me, I am sure it will for your loved one."

That doesn't work, and never will. We offer advice. Advice you will get from a whole host of people. From caregivers, to patients, to people who have lost their loved ones to this disease already.

No one has all the answers. But know this, the sooner you come to grips with this disease and accept it, the better off you and the patient will be.

If you go day after day trying to "fix" this thing we call dementia you have already lost. All you can do is improvise and deal with what is happening right now, today, this minute at times.

If I am blunt at times, its only because I have this disease and sometimes I don't always come across apathetic. I am, trust me. It's just if you ask a question here on Mp or you are wanting advice I will do my best to tell you from a patients perspective.

Which in my mind is the very best info one can get. If I stand in a garage that doesn't make me a mechanic.

I indeed tell you from a patients perspective. No one need listen or take what I say for advice. We all can make our own choices.

I certainly don't want any of you thinking that if you post something here your situation isn't important.

What happens is the suggestions you get or the advice that is handed out by my or anyone else may not be what you are wanting to hear...and that indeed is something no one can help you with.

I hope you understand what I am trying to say. And please don't take this personal or think I am pointing fingers at anyone. This is just what we do here.

Other sites will sometime tell the patient or caregiver how what they are doing is so noble, or they they are sorry for what they are going through.

We do that here also, but most of all we offer Support. And sometimes that Support is not what one wants to hear...you ask for help here you are going to get it.

Whether you act on it is up to you the caregiver, family member, or patient...

Tuesday, January 21, 2014

The End , who knows?



When is this going to end? You will hear this from caregivers from time to time.

I think about it all the time. When will this end? I know it won't get better. And I can't imagine it getting worse. Even though I know deep down it will.

When you are a patient, and you deal with this disease 24/7, 365 days a year there are times when you think you simply cannot take another step.

Caregivers have to have experienced these same feelings. The only saving grace I suppose is that when a patient reaches the end stage, they don't have any idea of what is happening.

Or do they? That is thing I wonder a lot. We assume cause everything we read and hear that in the end stage the person is nothing more than a vegetable of sorts.

But what if. What if they can hear what is going on around them? What if they can feel the horrible feeling of starving to death cause they are denied food by not being on a feeding tube?

What if they are trying to reach out, to say something but of course the words will never come out?

What if they are lying there knowing exactly what is going on around them?

Why would anyone think of such things you ask? Well, as a patient I have always wondered about the end stage of dementia. Just as I have always wondered in my many years of EMS can a person hear you when they are in a coma?

Even though they are unresponsive, are they? There is a thing you do in EMS called pain stimuli. It's where you give the patient a deep chest rub, or prick them with a needle.

If there is no marked sign of pain, they are unresponsive. But are they?

Where do these people get their information when they say, "Your loved on will never regain consciousness again?

Especially when it has to do with a brain injury or dementia? It pretty brash to say that your loved one has entered into the final stage and they know nothing that is going on around them, they have no sense of fear, or hunger, or pain.

They can't hear a word you are saying, and they will never again. If you know anything about dementia you know that any stage can last a long, long time.

Know one can predict I will be in stage 5 for a short period, then move to stage 7. Just as no one can predict I am in the middle stage and will move to the end stage of this disease within a year or less.

It's a guess. Perhaps a calculated one of sorts. But still anytime anyone tells you they understand about the different stages of this disease, ask them how they came to know this.

I personally have been talked about on different radio stations during an interview and after the interview where the other guests there tell me I am in the middle stage of this disease. Really?

And this has been happening for over two years. These people don't know me, they know not one thing about me, except for what I am telling them.

Now one would think, if I am in the middle stage of this disease why would anyone take what I have to say to heart?

They don't. Unless of course it plays to what they have to say about me or the disease.

Just know this. There are no constants with this disease. The doctor's that tell you they understand about dementia or the different stages are the doctor's I would advise you to stay away from.

My doctor has never one time mentioned a stage I am in, let alone predicting what stage I will go to next. Why? Cause he knows he can't.

There is one person who knows what is going on, what will happen, when it will happen and when it is time for me to leave this earth.

I have all the faith in this person. And I pray to him everyday not only for myself, but everyone who not only has dementia, but those who care for us that do...

Monday, January 20, 2014

I Have No Answers, We need a Fix

I get so emotional with some of the posts here on Mp. The family/caregivers that have to deal with total chaos day after day, hour after hour.

There is never a break, for them or the patients. I so wish there was an answer here.

I see in the posts the frustration of some, which in turn often leads them to more frustration and then wanting forgiveness for that very frustration.

It is not unusual to be frustrated, beaten down, felt as if you are nothing more than a door mat of sorts.

Having to listen to some of the most vile things one could ever imagine. And then all you get is, "Well, remember it's the disease."

We say that here so very often cause it is indeed true. Common sense tells us our loved one would never act or lash out as they do if not for the disease.

But at three in the morning, after being up all night, and having to cope with the absurd things that come along with this disease, knowing or hearing that it is the disease that causes this is little to no consolation.

What we are looking for is a fix. We patients want something that would at the very least make our lives tolerable. The family/caregivers want to be able to cope with what happens day in and day out.

Neither of these things is possible. I am myself now into the mid stage of this disease. There are days, hours, that I simply have no idea what is going on.

I can't engage in conversations. I can't remember anything. I have no recollection of what happen an hour ago let alone yesterday.

We both, caregivers and patients are in need of answers. Indeed of a fix if you will. But right now, there simply isn't one.

I so wish I could tell the ones who are new to this disease that things will get better. I can't, cause they won't.

You will have good times. Not good days. There will be fleeting moments where you will once again see the loved one you have known forever.

These moments won't last. All I can tell you is relish them when they happen. The next moment, could be the very last.

I have no answer to as what you can do to bring back some sanity in your home because of this disease has now taken over. Chaos. That's the way I explain it to many.

Total and complete chaos. And just when you think you may have some sort of handle on things, something else occurs. It never ends. It never will.

Thinking it will get better is nothing more than a form of denial. I pray for each and every member here daily.

I pray for those who have not found us yet. I know how bad it is for you as caregivers, cause I know how bad it is for me as a patient.

Someday dementia will be only something we talk about. It will be eradicated just like AIDS was in the eighties.

When? That is the million dollar question. Not in my lifetime. I hope our granddaughters never have to worry about dementia. That is my hope. Is it a reality? Who knows.

Know this, in your darkest hour you are not alone. I am sorry that everyone here must endure this horrible disease as a patient, family member, or caregiver.

Someday. Till then we must carry on. And help one another through these trying times. As a patient I too at times feel defeated. All I want is for this nightmare to end.

But somehow I put one foot in front of the other, knowing that when the day comes I can no longer do this, my dear wife, family and friends will be there to see I go through this with some dignity.

Wednesday, January 15, 2014

Statistics are skewed

Statistics. Dementia studies. How many are diagnosed. How many are being treated. How many have seen improvements. How many are in clinical trials. How many have died from some form of dementia.

Here's what you won't hear about statistics. They don't mean a thing. This thing we know as dementia is so new when you look at the whole picture.

Did you know that up until two years ago they never put cause of death as Alzheimer's, or dementia on a death certificate?

Now think about that. How many people do you suppose has died from the effects of dementia or complications due to the disease in the last say fifty years???

Up until about twenty years ago you wouldn't even hear the term Alzheimer's or dementia. It was senile, or hardening of the arteries.

There were no clinical trials twenty years ago. When I am asked "Did either of your parents have dementia of any kind?" I always say, "Who knows".

They simply didn't keep records like that back then. Both of my parents died relatively young. So, could either have had dementia? Sure. But back then like I said no one talked about it, let alone thought of testing for it.

Any statistic you read about how many people are diagnosed every 68 seconds is also skewed. Those they are talking about are the ones that indeed are diagnosed.

What about the ones who have had dementia and never once went to a doctor, let alone complain about memory loss??

So when you read about all the statistics, just keep in mind they are only as good as the input that was used. In other words, if they truly knew how many people actually had dementia, the one every 68 seconds would be much higher. Much.

One day they will have statistics. Actual statistics that mean something. Cause they will have years and years of concrete studies done. But for now any statistics you see are skewed.

Because they never ever started keeping records to just recently. Now you will see obituaries where the patient died from Alzheimer's. You wouldn't have seen this three years ago.

That fact alone and the fact that there is no way of telling how many actually have dementia and just fail to go to the doctor takes all their so called statistics and makes them in my mind useless...

Thank You




"Thank you." Those two words we say and hear all the time. I can tell you from personal experience that when I tell someone "thank you" now it takes on a whole new meaning.

With this disease the patient sooner or later must depend on everyone around them to make decisions for them, to care for them, to remind them of the simplest of things.

People don't understand this, they don't have to deal with it so like the disease itself it's out of sight out of mind.

Everyone I deal with today, from my wife, to our daughter, to Leeanne, to the person at the corner grocery store, everyone I have to rely on.

When I go to the store and purchase anything they could tell me "It'll be $10.32 please." I hand them a a twenty and they could give me back $2 in change and I would say "Thank you, have a nice day".

I am grateful this doesn't happen. Or at least if it has I don't realize it. But patients do in time rely on everyone they come into contact with.

When you have a caregiver, be it your spouse, your kids, or a nurse in a facility of some sort, you can only hope they are doing what is good for you.

Your decision making goes out the window, along with common sense most of the time.

So, thank you. The caregiver. Whether you have been doing this for decades, or just started yesterday. You are a hero in my book. I know what the sacrifices are.

Some day I won't, but I do now. And I want to take every opportunity to let caregivers know they are needed. Even though some patients can no longer show it, you are needed...

Tuesday, January 14, 2014

Don't worry about yesterday, don't worry about tomorrow


Don't worry about yesterday. Don't worry about what will happen tomorrow. You are wasting time, causing yourself stress, and it just doesn't work.

As a patient, I learned this early on with this disease. I know longer worry about what may have occurred yesterday because I can not remember my yesterdays.

Of course Phyllis June does. But she too has learned not to dwell on what has happened, or what may happen.

Today, right now is what matters. I tell everyone have a plan. Then have a back-up plan.You simply need to do this. Try to set your loved one up for success.

But this doesn't mean you have to worry about what may happen. The key word to that sentence is "may."

What your loved one does today, how their emotions are, their stress level, etc, and how you deal with it. That's what is important.

I always say worrying about dementia or what will happen with this disease is like carrying an umbrella around with you 24/7, thinking it will rain.

This disease is relentless and most of all unpredictable. The best you can do is have a plan. For instance if your loved one has a doctor's appointment coming up in a week or so, now is the time to plan for it.

Hopefully you have made arrangements for transportation. Having someone with you in case your loved one decides at the last minute in the car that this isn't going to happen.

Driving in traffic with a dementia patient going spastic is not good for anyone, and this indeed could easily happen. Also, have one of the easiest plans in place for doctor appointments.

Don't go. We all are wired to think, the person you love has a doctor's appointment and they simply have to be there.

No they don't. I haven't been to a doctor's appointment in years that mattered one way or the other. They simply don't. Sure your loved one needs to see their doctor, but when push comes to shove, let them win.

If they do indeed have some sort of condition that warrents seeing their doctor, then that is a different situation.

Why would anyone want to get into any sort of a back and forth with a patient over something that probably won't matter anyways.

Now that is not to say I am telling everyone not to take their loved one to the doctors. I am simply pointing out that with all the planning, they just may refuse to go.

Just keep in mind three simple questions.

Are they Safe?

Are they content?

Are they pain free?

If you can answer yes to a reasonable amount of certanty to these three questions, you are doing the very best you can.

Worry about what matters today. Not what has happened, or what could happen in the future. We can't change a thing. No one can. You simply have to deal with what comes along.

And that is more than enough, without causing yourself stress worrying over something that hasn't happened, and may not happen.

I tell you this from a patients perspective. I do as a patient worry about things that may happen.

It's the disease that does this, makes me be stressed about the littlest things. But it is Phyllis Junes job to keep me and my worries in check.

And she does her job very, very well...

Monday, January 13, 2014

Ask for a mini mental test


I noticed things were wrong about four or five years before my diagnosis.

It all started out slowly. First was things like names, addresses, numbers.

Then it began to get worse. I couldn't remember conversations that I had just had with anyone.

I tell people all the time, it's not like you forgetting where your car keys are, its like having them in your hand and not knowing what they are for.

It took me three years to get my local doctor convinced to refer me to a Neuro. And that's when things moved quickly.

Within days I was diagnosed. Then I had to begin the disability process which was grueling for anyone let alone a dementia patient.

From the time I was sent to a Neuro to the time I was approved for disability was about six months. Then there is a another six month wait for your checks to begin.

And as everyone knows the bills keep coming while you wait.

This devastated us financially. We had to rely on my wife's income, and had to pay for the meds I was prescribed.

Finally, two and a half years after being approved for disability I could enroll in the insurance. There is a 20 month wait for everyone.

If you suspect something is wrong, it probably is. I knew something was drastically wrong. Still, it took forever to get anyone to listen.

Get checked. Early detection is the answer. They of course can't cure anything but it will help with the stress just knowing what is going on.

Ask for a simple mini-mental test. They can do this non-evasive test in the doctors office in a matter of fifteen minutes.

Saturday, January 11, 2014

When you pass from dementia you have won the war



We have many losses here on Mp. And one is just as devastating as the other. Our hearts go out to the families. Saying we are sorry for your loss never seems to be enough, but we are truly sorry for every loss we have here on Mp.

I always tell people that when someone passes from this horrible disease, they have not lost the battle.

They indeed have won the battle. They are finally free of this disease that has robbed them completely. 

There are many "wars" one will encounter during this journey, and chances are you will lose all of them. But in the end, when your loved one is finally free from the disease called dementia, they have indeed won the battle.

I completely understand the meaning of loss. But in time, most if not all will realize when their loved one has passed away it is indeed a blessing of sorts.

Right now there is nothing that is going to slow the progression of this disease. That alone tells me as bad as I am today, I will get worse.

And when we all reach the final stage of this disease, we essentially have already left. The person you see is but the earthly remains in the final hour.

But their soul is free. "Free at last, free at last. Thank God we are free at last." as one of the most famous quotes in history states.

My heart breaks for every person who has this disease, every caregiver that has to do the unthinkable at times, and then to just do it again and again.

We all suffer when we lose a loved one. We all grieve. Grieving is for the living. But know this, they have indeed won the battle.

I long for the day I am also free of this disease. I will fight each war, and lose most to dementia. But in the end, I will win. I will be free. I have come to grips with this a long time ago.

I have made peace over it. What else can you do? So grieve for you loved ones passing, but know they are free from the horrible nightmare of dementia.

They are at peace. An every lasting peace. That is what I want people to know and remember when my time comes...

Placement, write about your loved one for the staff



Something I hear all the time when talking about placing a love one is the family is worried that the facility won't know who their loved one is.

They want to make sure Daddy has his special blanket he has grown to love over the years.

They want to know that Grandma is left sitting in front of the window, she loves to look out the window. They need to know your wife does not like activities of any kind. And on and on.

There is a simple solution to all of this. All one needs to do, and everyone should do this when placing someone is to write down who your love one is, and most important was.

Trust me when I tell you, the people who work in these facilities are busy enough that they are not going to just remember that Mom needs to have a warm glass of milk before she goes to bed.

Mom may not touch it, but it has to be there. They may not know that Dad always has to sit at the table with his back to a wall.

Or that your loved one is deathly afraid of showers. Write it down. Tell them a story if you will.

Everyone who is placed should have a folder that goes with them everywhere they go. To the doctors appointments, to the hospital if need be, and even in the room for visitors to glance through.

If your loved one loves company, tell them. If they love company but don't engage in conversation, tell them.

This is not rocket science, but few to none family members do this. They assume the facility will know cause this is what they do. They won't and the truth be told, they don't have the time to figure out who likes what and who hates what.

List their fears. List the foods they like, the foods they hate. List the things they are allergic to. Sure this will in their chart, but put in your folder you are making for them as well.

Not only tell them. But make a list of things that your loved one does. Who they were before dementia came into their lives. If my caregiver some day in a facility knows I was in EMS and law enforcement that is a subject they can bring up every time they are around me.

Will it help? No one knows, but I do know this, it can't hurt...

Friday, January 10, 2014

Fiblets, lying to your loved one?



Lying to your loved one who has dementia. Should you? Do you? Would you?

The answer of course is personal. Every situation is different. It is my job to explain to you my feelings about this, as a patient.

In the beginning stages, and even in some moderate middle stages of dementia some patients may be able to understand what you are telling them.

Say for instance a very close relative passes away. Right now, I would want to know, and I would be told. No question.

But what about those who cannot comprehend things. They do not even know most of the time who you are, let alone the person who has passed away.

What good would it do to tell these people something they can do nothing about, and something they will not remember in an hour after telling them.

Those who don't have dementia many times say, "They have a right to know about these things."

It has nothing to do with if they have a right or not. What is has to do with is do they have the cognitive abilities to comprehend what you are telling them.

What good would it do to tell someone their brother passed away, and have to to tell them every day, sometime every hour.

None. Thats the answer. We call them "fiblets" here on Mp. Tell them anything but never tell them something that will just upset them and cause them undo stress they can do nothing about.

It's not about is it right to keep things from them, its about can they handle what you are going to tell them.

It may seem cruel, but think about telling someone their brother has died, everyday...or two three times a day. It won't do one bit of good. For them, or you.

Take it from a patient, I want and deserve to know what is going on. Today that is. That all will change. And it is up to Phyllis June to control what is told to me and what isn't...

TGIF



TGIF...we all know what that means. The beginning of the weekend. The time we can enjoy a day or two from the hustles and bustles of work, traffic, just the stress that occurs monday through friday.

I used to live for fridays. Now and for some time now it's just another day. When you have dementia, everyday runs into the next.

The only day of the week I am aware of what day it is, is saturday. And that's because Phyllis June is gone for 24hrs.

Even then somehow I get confused on what day it is. Dementia robs you of knowing what day it is, what time it is, even what year it is.

This disease attacks your frontal lobe of the brain first where all your short term memory is stored. When you don't have the ability to remember things that just happen, or were just told to you, being glad it's friday is no longer an issue.

You have to have a reference point to understand what day it is, what time it is, etc. I try to explain to people when you read a map it makes no sense to you what so ever if you don't know where you are.

You have to know where you are, to figure out where you are wanting to go, with or without a map. That same thing happens with dementia.

If I don't know or have a reference as to what day it is, anything I come up with is a sheer guess. Tuesdays mean as much to me as Thursdays do.

Mondays could very easily be Wednesdays to me, if I don't ask constantly what day is it?

Everyone of us start our day out by remembering what we had planned. Dementia patients can't and don't do that. You know you have to get the kids ready for school cause it's Monday.

Or you know you can't have anything planned tonight cause you have company coming over for dinner. Little things like this you know and understand cause you remember it.

It's in your short term memory. We don't have that ability. So when you show someone with dementia how to do something, chances are they won't remember it, or even that you showed them.

When you tell them it's friday, you will likely tell them over and over again. Cause they won't remember it. And all our days are the same, cause even if it is a special occasion someone better tell us.

We won't remember, we can't. We don't have the ability, we simply don't. So the next time you think your loved one is not listening to you, or is ignoring you, chances are they hear you but they can't remember what you were saying just ten minutes from now.

It's a horrible way to go through life. Not having any short term memory. And then in time you will have to deal with losing you long term memory as well.

The disease progresses. That is a fact. Live in the moment. For none of us know what the very next moment has in store for us. Don't worry about getting dementia if it's in your family.

You could of course. But you could also get hit by a truck today. Worry about getting something is the same as carrying around an umbrella everyday cause it may rain.

Live for today, right now, right this moment. It's all we are sure of. It's the only thing that we can try to control, what is going on in ones life right this moment.

You can't expect to control things that are months, or years away from happening if they happen at all. I could spend my days worrying about what is going to happen.

I choose to live for right now. Deal with the problems I have today, right this minute. Not dwell over something that may not even happen....

Thursday, January 9, 2014

Dementia, we have been robbed

"Help...we've been robbed". That's what its like when you deal with this disease. You have indeed been robbed.

The patient, the family, everyone involved. Robbed of precious time together, precious memories, and robbed of being able to do what we once could do.

Dementia comes to us slowly. It knows no boundaries, it's does not exclude anyone on account of their race, sex, age.

Many people think you have to be elderly to be diagnosed with dementia. We here at Mp know thats absurd.

It's the stigma of the disease. You are supposed to be in a some sort of facility, sitting in a wheel chair, drooling, staring out into space.

I have been told over and over that they cannot believe I can express myself as I do. Dementia does not make you stupid.

I'm not being a wise guy here, but the number of people who think that a patient cannot form any kind of sentence or say what is on their mind is just staggering.

That too is the stigma of the disease. Once you meet one dementia patient, you have met one dementia patient. We are all different. We know this. Some cannot begin to form a sentence.

Some cannot be rational about anything. I too will be in the category one day. But for now, I can express what is going on.

This is the very reason I tell everyone ask me. From my doctors to our friends to complete strangers.

I have a wealth of information about dementia cause I live it every single day. Talk to a patient.

If you wanted to get your plumbing work done on your house you would call a plumber, not a house painter. This is the same. Listening to people who "know" about this disease, yet has no one around them with it, nor has it themselves is the same thing.

They are giving you opinions. Theirs. What I tell people is not my opinion, it is what is happening to me daily. I don't surmise what sundowners is, I know.

I don't guess what the horrible nightmares are nightly, I have them. I don't tell people what I have read or heard about dementia. First of all I can no longer read any more than a paragraph, but again I live it.

The very best info you can get about dementia is from someone who is living the disease. Not because I say so, it just makes common sense.

So when I say "We been robbed", we have indeed. They just didn't take everything. I still have some cognitive abilities. Now anyways.

But the thief will be back, that you can be sure of.

Tomorrow everything can change...

Rick Phelps is the man, not dementia


So often I post about my struggles with this disease, sometimes I think it's good to post something about me. Tell you who Rick Phelps is, the man, not dementia.

I have been very lucky. I met the love of my life, my best friend, and my wife some thirty years ago.

We have had a very good life together. We both worked two jobs our entire marriage. We've worked hard, played even harder.

Always took family vacations. Did things together. I have had many passions in my life, but I suppose motorcycles ranks number one.

Over the years I have probably owned a dozen or so. I started out in my early twenties and have rode till about four years ago.

I also had a passion for music. I played guitar with some of the best around this area. As kids we thought we were the bee's knees.

One of my very best friends, Dan Mitchell was a huge influence on me during my younger years. Dan was/is very talented record producer in Nashville now.

In the early eighties he moved to Nashville and has been there since, working with the likes of Tim McGraw, Reba, Alabama, Willie Nelson and on and on. He owns and operates a recording studio, he's a producer, song writer, and has managed many famous acts.

I...I stayed here. I knew I didn't have the talent for Nashville, nor was ever going to have. But the times we had playing music is some of the best times of my life.

I decided that public work was were I would make my mark, and Phyllis June and I began are career in EMS in 1984. She still runs squad to this day. I of course was forced to retire some four years ago.

One of my other passions was law enforcement. I had been in law enforcement for many year, then went to the private security sector and then on to having my own private investigation business.

I met some very famous people during this time. Worked with acts like Trace Adkins, REO Speedwagon, Sawyer Brown, Aretha Franklin, and most recently acts like Lady Antebellum.

One of my favorite stories I love to tell is the time Tim McGraw met Rick Phelps...people just look at me like I'm nuts. lol

I peed with Randy Owens of Alabama fame. Something not many know and my wife wishes I would forget...I had a shirt on that said "I choked Linda Lovelace" at the time and I remember he and I laughed about that and he said you want to sell it???

I said, "No, but you can sign it", and he of course did...

I worked what you would call behind the scenes for many of these groups. They all had their private security, it was them who I worked with but met some very good people.

Who were surprising down to earth people for the most part. The one we had most trouble with in my tenor was Janet Jackson. Some artists think that their every whim is your command.

And it was for Miss Jackson. Her entourage had to jump through so many hoops. Her bottled water must be placed in the fridge in the green room with all the labels facing forward.

She had to have the ice changed every 30 minutes. She demanded a stretch limo from the airport, to the venue, back to the airport to board her private jet immediately after the concert.

The fruit in her room had to be arranged in a certain way. There was to be no one speak to her while she was backstage...and on and on.

I was fortunate to meet some very famous people. Some of the nicest were Trace Atkins who was very, very laid back. And then Gov. Arnold Shwartzenagger.

I spent three days around the Governor and I can tell you without a doubt he loves America. He loves our troops, and he loves to make movies.

Know matter what you see in Arnold's movies, he's no more then maybe 5'7", maybe 5'8"tall, on a good day. Only thing I could figure out about that was it was the camera angle during a movie shoot that made him look so tall.

He was built, everyone knows that but tall...not so much.

Once I went to get Ray Steven's for his show at his hotel and when I was allowed access to his room, Mr. Stevens was doing a line of coke in the bathroom.

I don't know who was more embarrassed, him or me. Do I arrest him, charge him with a cocain possession or just pretend it didn't happen.

I chose the latter. There were about 20,000 fans waiting to see him preform, and I wasn't about to be the one to haul Ray Steven's to jail.

He was polite, courteous, and very, very talk-a-tive after our little encounter....

So many stories, so little time. I also owned an operated a body removal business. We had several funeral homes contracted and we would take the deceased from point A to point B.

Be it wherever. We had many out of town transfers and even out of state runs we would do for these funeral   homes.

Phyllis June worked right along side me. We had about six employees, and loved doing what we were doing.

What may seem morbid to some, was providing a service to the funeral home and treating every family we came into contact with, with the respect they deserved.

Phyllis and I love the outdoors. We love camping, being at the beach, or taking all the girls to a water park, zoo, etc.

I love to fish. I love to just relax in the outdoors. Doing nothing sometimes and other times working all day.

We both to this day volunteer a local medical clinic here called "The Hope Clinic". A place where individuals can go for medical treatment at no cost to them.

It's a very good program and we are both blessed to be able to be a small part of it for the past several years.

I would also like to tell you about my daughter. Jodi who left this world way too early at the age of 23. Jodi passed away August 21, 1997.

She left behind a husband, and two small children. One three, on just turned two.

The day she died my world stopped turning. And it took years for me to come to grips with this tragedy. I blamed everyone, and everything.

I was lost for so long. Once again if not the love and understanding of a caring wife, I would not have survived this.

Phyllis June indeed saved my life back in those days. She knew how I was hurting, and let things go for a time.

After many consulers and years of grieving we both found peace in our pastor who told me he had no idea why such a young girls died when she did.

Know one does. But he did know it was God's will. Not his doing, but his will. We miss her, and one of my constant fears is forgetting about her.

This has just been a view if you will into my life. A life that is not defined because of dementia. It is defined by the people around me.

My faith, my family, my friends. That's what defines me. Those who have known me for years know that dementia is just another bump in the road that I have been dealt, for whatever reason.

I took this disease and met it head on from the very day I was diagnosed. Dementia does not define me. It never will...

Monday, January 6, 2014

Hiding things from a patients perspective


I have read and even talked to many people along this journey who tell me of their loved ones hiding things.

They would find bananas in the bedroom, shampoo in the dresser, on and on. Almost everyone one of these people said the same thing. "Mom is hiding stuff, hoarding it"

That could be, but let me tell you what is happening from a patients perspective. What is going on here is the patient is simply putting things away where they think they are supposed to go.

This happens to me all the time, and I am not hiding a thing, or hoarding anything. I simply put things back where they go.

Problem is, where I choose or think they go is not even close to where they should be. I have found things that belong in the garage in our kitchen cubbord.

Phyllis June has found things that should have been in the refrigerator in a cubbord. I have thrown things out, thinking they need to go in the trash.

There has been pans in the freezer, my coat on the hot tub, the dogs dishes in the garage, where they never are kept. On and on, and on.

We have lost many things here at the house, which in fact are not lost, its just a matter of where I put them. We had a potato peeler that we got from Pampered Chef that we just loved. It's been gone for months, never to be seen again.

So the next time you find an orange under the cushion of the couch or beaters to your mixer in the bathroom, remember it's there cause that is where it goes. To the patient at least.

When I tell this story, a look of disbelief comes to most peoples face. They just assume their loved one is hiding things or like I said, hoarding them.

When in reality if they would think about it, "Mom, Dad" or whoever don't have the ability to know to hide anything. They are indeed simply putting things where they believe they go...

Sometimes what is happening is something very simple. It's not a huge cover up like they are hiding things on purpose. Patients don't do anything on purpose.

What Can I do ?


What can I do? That's the question everyone has about their loved one. What can I do?

With dementia everything changes all the time. What works today may not tomorrow, or ever again.

This only adds to the stress of a caregiver. You will read suggestion on Mp that say "try this or try that."

Some suggestions work. Some will not. Every patient is different. And every patient does not react to what you are trying to help them with.

I think the most important thing to remember is how your loved one was, is not how they are now. Chances are they belonged to the generation that were a proud, patriotic, and private generation.

Hardly ever complaining. Used to doing things themselves. Hate asking anyone for help, and certainly didn't want to be a burden on anyone.

All of this goes out the window when you reach the mid to late stages of this disease.

I used to make life and death decisions, sometimes in seconds. Now I stand in front of my sock drawer and think, which pair?

I cannot stress enough how everything changes with this disease. Most family members/caregivers see this change, yet treat their loved one as things once were.

It's natural. But in the end it won't work. So the answer to "What can I do?" is always nothing.

Nothing, meaning you can be there for them, you can assist them with daily things, you can be their caregiver...but you can't change what is happening.

Try to understand what is happening you just can't fix. As bad as it is today, today my very well be the best day they ever have again.

I along with everyone here wishes thing were different. But they're not. It's those who go through this journey thinking things will get better, or they can do something to "fix" what is happening that will struggle the most in the end.

They are indeed just fooling themselves. I myself have come to grips with this disease. Long ago I made peace with what is happening, what is going to happen.

That doesn't mean I like it, or long for some drug that could make my life more manageable. I know every morning I wake up, and every night I go to bed what is going on.

That I believe is the hardest part. Losing your mind and knowing it is happening. As patients we try hard to keep our feelings in check.

As caregivers you try hard to not look at a loss. Both of us are kidding each other. All we have in the end is each other. I don't like what is happening, but I have learned to cope with it.

For now. Right this moment. An hour from now, I may not be able to say that. Because an hour from now I will not remember making this post.

That's what can't be fixed. Live in the moment. Don't worry about what tomorrow or next week will bring. For me, there is no tomorrow. There is only right now. My yesterdays have long been gone.

One day at at time. Sometimes one hour at a time. It's all we can do. And really it's all I can handle....

Saturday, January 4, 2014

Clinical Trials... Back to square one

$200 billion the cost of dementia in 2012. This cost is expected to reach $1.1 trillion in 2050.

A figure that will cripple the health care system as we know it. Dr Rudolph Tanzi the leading neurologists at Harvard Medical says that all the studies that have been done, all the clinic that have been preformed have done nothing but take them back to square one.

All the drugs used in clinical trails have failed says Dr. Tanzi. What has been going on he goes on to explain is that the patients in these clinical trials have been given drugs to treat early on-set of the disease, when in fact they are in the later stages.

In other words, they have failed miserably. They now know what should have been done was to treat these patients with a drug that could react to later stages in the disease.

The problem with that, there is no drug. In other words, if you are in a clinical trial, you already have the disease, and are past the early stage where the drugs they have to use are useless.

What needs to be done is they need to come up with drugs that treat this disease in after it has been detected. To which like he said so far they have failed.

I have long been against clinical trials myself. This just confirms why. Some will say we need trials to learn how to combat and come up with new drugs.

This is true, just not in the way they have been conducting the thus far. If you are contemplating a clinical trial you may want to read up on the medical writings of Dr. Rudolph Tanzi.

This man speaks the truth. What drugs there are now using are to try to slow the progression in the early stages, not only have they all failed, but they should not even be used in a clinical trial.

There is a good and bad to this. The good is, they now know what they have been doing isn't and hasn't worked. The bad is, they are indeed back to square one...

Friday, January 3, 2014

A Cup of Coffee Please

Would you get me a couple coffee with cream and sugar please?

A very simple request. One that many of us have made over and over. But what does this mean to a dementia patient?

First, we have to go to the kitchen, providing we remember where the kitchen is. Then we have to remember what we are there for.

Now, we have to get a cup out of the cubbord. If we remember where the cups are. After getting the cup, what is the cup for?

Now comes the time panic sets in. We have no idea what the cup is for, if by chance we even found one. We stand there in the middle of the kitchen, with the deer in the headlight look.

Having no idea what to do with this cup. We can't put it back, we don't know where it goes. Some will just carry it with them. Some will set down. Some will just stand there.

And we haven't even gotten to the coffee or the cream and sugar yet. What this is, is a perfect example of compound directions.

You have asked a person with dementia to preform what you would consider a simple task that has several parts to it. People who do not have dementia can do these things by just sheer habit.

You need to keep in mind, a dementia patient may have trouble finding the kitchen, let alone the cups, the coffee, the cream and sugar.

Our brain no longer enables us to do tasks, even the simplest of ones. I find myself in the kitchen on more than one occasion with a pillow from the couch in my arms.

There have been times when I am in our spare bedroom looking for something that is in the bathroom. Or in the bathroom, looking for my car keys.

It's a constant battle with memory loss. And we lose our short term memory first. My short term memory has been long gone. If I remember something, anything that has happened over ten minutes or so ago, it's by luck.

People must realize we are not the same. There is so much more to this disease than just memory loss. Though memory loss is a huge part of dementia, we also have to trust everyone we come in contact with on a daily basis.

That alone breaks you down. I can't make decisions. And if I would, they would be just guesses on my part. I don't want anything to do with a decision making role.

I have to trust that my best interests are being met. By everyone I come in contact with. Some people forget this, I can not. It's with you constantly. Not being able to make the simplest of decisions, and having to to rely on people around you for guidance.

Even if they don't know that you are...

Thursday, January 2, 2014

I am tired



I woke up this morning and realized I am getting older. Humph. What happened? They say you are as old as you feel.

I feel fine. It's just that with dementia I think it sucks the life and years right out of you.


This year I turn 61. What? I have had memory issues for at least five years before being diagnosed in 2010. So if my calculations are correct I am going into my ninth year dealing with this.


It's a known fact that stress ages you. I can't imagine anything anymore stressful than memory loss.

And of course when you talk about dementia, memory loss is just one part of the disease.


I get so tired now a days. Run down, just that blah feeling. Don't want to do what needs to be done. Sometimes getting out of bed is huge issue.


That's the disease. You are just broken down from one day to the next. Right now I can't think of one thing worth doing. And I'm simply not like that.


But your brain controls what you do, what you say, actions you take or don't take. Patients are at the mercy of this disease. That is a given.


I could do dozens of things here around the house today. But I know once I attempt one thing, that one thing alone could be the very thing that throws me into a depression, stressful situation.

I remember when this first happened. I told everyone I had decided to do something about this disease. I was not going to sit in my recliner and watch the world pass me by.

Knowing there is no cure, no slowing the progression didn't matter. I would move forward.

During the past few years I have done numerous speaking engagements. From locally to all over the country. At first they were pretty easy. I would get confused but I just looked at Phyllis June who was always right there in the front row and she would tell me what I was talking about.


A few months ago that all changed. Even the events we did here in Ohio proved to be too much of a stress on me. It would take me days to recuperate from just being gone from home.

Now, putting dishes away, doing some laundry, even letting the dogs out is stressful. Seems almost impossible, but its true. I have let the dogs out more than once and forgotten about them.


They never go anywhere, especially Sam. He sits right in front of the door and after a few minutes he will let me know he's out there.

I'm tired. That's what it is. When the weather breaks and its not dark at 5:30pm that will indeed help. Till then, it's do what I can do. Sometimes I just can't even force myself to do something.


It's just easier to stare out the window. Remember that. Patients regardless of what you think do not need to be entertained 24/7. I enjoy doing nothing.



Sometimes nothing is just what the doctor ordered. Pushing myself was the thing to do before. But now even that has changed. Everything changes.



It's not just memory loss. Not at all...

Caregivers lose their patience too

Outsiders do not understand. You are so right. Everyone can lose their temper once in a while. We say things to each other that we don't mean under far less stressful situations.

I suppose I could say they won't remember what you say to them out of haste, cause they won't. When this happens, and in truth it happens far more than is every admitted, but when it does happen I am sure the family member/caregiver feels worse afterwards then the patient does.

I am certainly not condoning yelling at a patient. But let's be honest here. We are all human. And like you said, no one understands what a person who deals with a dementia patient goes through.

Some will say, "Yes but look at what the patient deals with constantly, the disease." Which again is very true.

All I am saying is to say that family members or caregivers do not ever lose the composure is simply not true. What's important is that you recognize it and take it down a notch.

Anyone who's been married for any length of time will tell you it's not always a bed of roses

Some couples have disagreements, some have knock down drag out fights. In the end, most feel sorry for what was said. Again, I am not condoning this behavior. But we deal in reality here and to think this never happens is just being dishonest to yourself and everyone around you.

The patience of Jobe. That's what it takes to be a caregiver and even then there are times you simply can't take it. Be it at 3:00am from another sleepless night, or something as simple as answering the same question over and over.

Please don't beat yourself up over this. I have always been an advocate for the patient. Being one I know what they go through. But I am not naive enough to know that tempers will flare.

It's getting them under control, and calming the situation down. By mis-direction, or whatever works. And when nothing works, this is when the anger, frustration, and stress begins.

Sometimes with some patients it never leaves. Not everyone is made out to be a caregiver. I don't care what any one says, they simply aren't.

I hold our caregivers to the highest regard. But I also hold them to the highest standard.. There is no room for a caregiver who can do this sometimes. There's just not. It's bad for the caregiver, it's bad for the patient...

Wednesday, January 1, 2014

Happy New Year 2014

Happy New Year. What does this mean? Happiness is a state of mind. My happy days are few and far between now, but I try my hardest to keep a positive attitude.

There will be a day when I am not capable of even doing this. Being happy is a state of mind. However being thankful is a way of life.

I am truly thankful for what I have, my faith, my family, and my health. As bad as it is with dementia, there are things far worse. I could have dementia and be battling another disease at the same time.

Things change in the blink of eye. A young man, physically fit, going out to change the world, then in one split second a car accident paralyzes him for the neck down.

I know there are times when you are absolutely at the end of your rope. Be it as a patient, family member, or caregiver. You don't think you can take one more day.

Try to be as positive and thankful as you can. If it was easy, none of us would be here. There will be days this coming new year that happiness will seem impossible.

Things do change in the blink of an eye. Today, right now, I am thankful. And I plan to be that way, "While I Still