Sunday, March 30, 2014

God

When people get most diseases, sometimes it can be traced back to an individuals lifestyle.

If you have high blood pressure, or heart problems, most times it is attributed to ones lifestyle.

The diet ones on, the stress that is involved in someone's life, smoking...these and dozens of others factors can be found when one is diagnosed with high blood pressure, or heart condition.

Cancer is the same way. Just about everything now a days can be attributed to or thought to cause cancer. From smoking to agent orange, to fibers in the air we breathe, to coal dust.

But with dementia none of this is the case. I didn't get dementia cause I smoke, or cause I had a few beers in my day. Nor did I get dementia cause of the food I eat.

It's a disease. A disease of the brain and for what ever reason I and over 5 million people have it, and someone else is diagnosed every 12 seconds.

This fact alone makes us want to blame someone. You can't blame the tobacco companies for dementia. or the auto makers for all the emissions that are in the air from vehicles.

We can't blame any one thing on dementia. And that is what we all want. Someone, something to blame. It's in our DNA to want to blame.

I never once blamed anyone or anything from being diagnosed. I am sure there are people around me, my family who do though. I was just glad to get answers to why I was dealing with what I was for some five years before being diagnosed.

I understand wanting to blame someone for taking your loved who is only 55 years old, or 45, 35...it's just not fair. And it is not fair. But you have to deal with things in life that simply aren't fair.

The day I buried my daughter I knew God had forsaken me. What kind of God would allow a 22 year old woman to die, bleed to death in a hospital no less???

It took me years to understand it was not God who did this. But I needed someone to blame. God gave me Jodi for 22 wonderful years. Her time here on earth was through.

What happen was a terrible number of events that lead to her death. Not what God had done. I will always be grateful for finally understanding this.

It allowed me to see that God wasn't the problem, He was and always is the answer. That of course is a personal feeling I have with God.



God has nothing to do with dementia. God has nothing to do with the horrible things that happen in life. You can thank Lucifer for that, and every evil and disastrous thing that happens on earth.

We want someone to blame. God seems to be the easiest candidate. But He's not. I remember when my daughter passed away. I blamed God and everyone for her passing.

When bad things happen, horrible accidents, tragedies, death, and disease we don't understand why, and we as humans want someone to blame.

It's natural. I was diagnosed at the age of 57. I too know the things my wife and have lost on account of this disease,

But I also know how thankful I am that I can merely type this comment here today. One day I will not be able to do that.

One day I will forget how to swallow, how to walk, how to talk. This is all because of a disease I have. A disease of the brain.

To blame God, I would have to blame Him every time I got a cold, or every time I had a headache. Every time my truck wouldn't start, or the times like now, when there isn't enough money to pay the bills.

I thank God everyday for allowing me to do the things I can. I could have Cancer, and have dead in a matter of months. I could have been born a paraplegic and not known what it is like to do the things I have done my entire life.

There are many evil things in the world. There are tens of thousands of diseases.

So, disease exists for the same reason that the tree of the knowledge of good and evil existed in the garden of Eden, for the same reason that the cross stood on Calvary’s hill. It is the reason for imperfection in the midst of our yearning for perfection.

We as human beings simply cannot understand why bad things happen to good people. But we must understand that bad things happen to bad people as well.

There is evil in this world. And there is disease, starvation, and countless atrocities that are carried out everyday. We need to understand that God does not do these things.

"In My Father's house are many dwelling places; if it were not so, I would have told you; for I go to prepare a place for you." Jesus died for us, God gave his only Son so that we could be forgiven of our sins.

Not to get to religious here, but remember, Jesus asked that he not have to go through what he did. God turned his back on him, and gave His only Son, so you and I could be forgiven.

I have had a great, wonderful life. God allowed that. God will not forsaken me. He is there, always. Evil is what I and every patient deal with now. Evil. Plain and simple Ever wonder why the sun comes up in the mornings. Or the birds sing, the change of seasons, or why we have the freedom we enjoy?

There are so many things we take for granted. When disease comes into our lives such as cancer, diabetes, chronic heart problems, and dementia we tend to wonder why me?

No one has the answer to this. Why does someone die so young, or why do some people seem to have everything while others struggle to just survive?

I know this is hard to believe but I truly am thankful for the things I have, and I would not change one thing. Bad things happen. Horrible things that there is simply no answer to.

Do I wish I was never diagnosed with this disease? Of course. But I am thankful that I have been able to do as well as I have for the past several years.

This will all come to an end one day. I really am lucky in a sense. I know my time here on earth is coming to an end. I have had time to think about that, and do things that will prepare not only my family but myself for this.

Some are not so lucky. Some left for work yesterday and never returned.Any one of us could be gone in the blink of an eye.

I have had time to stop and enjoy things that a few years ago I never even knew existed. I took many things for granted. Not anymore.

Everyday is a blessing. Even on the days I struggle so much with this disease, I realize there are millions who are so much worse off than I.

I am lucky. I am blessed. And I am so, so thankful for this...



Thursday, March 27, 2014

My Mind Wanders

Wandering. We all know what this is, and it is with you in the back of the caregivers mind constantly.
People ask me, "Do you wander?" and I always tell them yes, but not in the normal sense.
When we think of a patient wandering we think of them getting out of the house or facility, and just "wandering" around mindlessly.
And make no mistake this does indeed happen. But with me, right now, when I wander it's to a place where I have been before.
My mind takes me to places I have been, I am able to see things that I may never see again, and it also allows me to see things that I have never seen nor ever will.
A lot of it is what we call imagination. I can sit in the front room be watching American Idol, and at the same time be fishing off the pier at Myrtle Beach.
Or riding my motorcycle through the Bad Lands. Taking a walk with our dogs. Or just sitting there, thinking about things randomly.
What I am getting at that patients do wander. Perhaps not like people think of wandering. But we wander just the same.
It's about all we can do. I have a phone that tells my wife my ever move. We have camera's inside and out that monitor my movements. I wear a bracelet that tells everyone who I am, what my medical condition is, and who to contact.
We are in essence prisoner's of our own homes long before we ever realize it.
And all this is fine. It's something that has to be done to be pro active that if something would happen, there would be a starting point.
But this disease takes your freedom from you way early in the process. I used to go places and do things I could not even begin to try to go there now.
I used to be on my own pretty much. Matter of fact most of time people depended on me for things. Now, of course that has all changed.
I am dependent on whoever is around at any given time. Be it the cashier at the local store here. I have to trust she gives me back the correct change.
Or the guy at Home Depot, who tells me what a certain tool is and what I could use it for.
Or my wife when she say's "You need to take your meds, you need to be here, or you need to be there."
We all depend on someone very early on when this disease comes into our life. We may not admit it, but it's true.
Especially males. Try to get a hard headed male to do anything. One of those that walked to school every day both ways, in four foot of snow with cardboard in the shoes...
Try getting them to admit they need help. They don't. And they won't have a bit a trouble telling you, whoever you are. I ask for help all the time.
Why? Cause I know I need it. I don't like it, but life is full of things we do all the time we may not like. Put on your big boy pants and fess up when you can't do something.
I do...more times than not. I used to try to hide it. Not anymore. Most times I haven't a clue as to whats going on. Just like now. I haven't a clue what this post started out as.
And there you have it...I don't know.

Tuesday, March 25, 2014

Medications Help Me

We all talk about what different medications your loved one is on here. What works or seems to, what they can't take for whatever reason and so on.


For me it's about dealing with this disease. And by that I mean what helps me more without question as a patient is the meds I am on for depression, stress, and anxiety.


I know for a fact I could not function without these drugs. They are not something that just help me, they are vital for me to motivate.


It took a long time to find the right drugs, the right dosage, but once my doctor got this figured out by trial and error it made a world of difference.


It is the very reason I can function. Think about that when you talk to your doctor and make sure your loved one is on something to deal with depression, stress, and anxiety.


This will help them immensely and they do work. You just have to get the right one that helps them. It may take a few weeks, but once they find the right ones, it will make a huge difference.


I take more drugs that help me day to day in dealing with this disease, than I do for the disease itself. Even then there are days I still for whatever reason cannot cope on some days.

Saturday, March 22, 2014

Losing time with dementia

Time. Your loved one probably has a very hard time, with time. You see when you have dementia you are no longer able to negotiate time.
Ten minutes can seem like an hour. A day can seem like a week. And looking at a clock, well, for me is a waste of time.
To be able to understand time, you have to have a reference. It's like traveling on vacation and relying on those things we used to use called road maps.
To use a road map, no matter how well you are schooled on them you must have a reference point. You have to know where you are, to figure out where you want to be.
Time is the same way. There has to be something you can reference to know what time it is.
When The Ellen Show comes on TV, you know it's time to get ready to get your kids at school.
When your alarm goes off in the mornings, you know you can lay there for an extra ten or fifteen minutes and still be on time.
Days for a dementia patient run together. We can't tell one from the other. Most people know when It's Monday cause yesterday you went to church, had a wonderful time with your family, or just laid around and did nothing.
Plus it's the beginning of the work week. With dementia there are no yesterdays. I have no idea what I had to eat for dinner last night, let alone telling someone what day it is.
The mind is a terrible thing to lose. And way before the end stage, we patients lost track of time simply because we no longer have a reference point.
Think about that. Very few people think about time, cause it is always in the back of their mind. But imagine for a bit, you have no idea what day it is, what you did yesterday, or what you are supposed to do today.
That is how this disease works, and it's just one of them issues a patient deals with everyday, all day long.
I do remember parts of yesterday, only because something terrible happened.
Our granddaughter stayed with us the night before. As usual I was up very early and got Phyllis June up later for work.
We sat here at the dinning room table and had our coffee and tea just like we do everyday. When it was time for Phyllis to leave for work, she told me don't forget to get Cortney up for school.
I was supposed to get her up at 7:45. At about 8:30 for whatever reason it hit me. I had forgotten she had even stayed in just that short period of time.
Some will say, "I have done that"...but the reality is we patients do these things all the time. It's just one thing after another. And it always involves forgetting something or someone.
Time. It's the one thing you lose as a patient. Time. It's the one thing we all want more of. Time. It is indeed our enemy...

Friday, March 21, 2014

I Am In Pain



I told someone the other day that I don't experience pain with dementia. Yet, that is.
After I said that, I thought to myself, that was a dumb thing to say. Sometimes, actually more often than not I come out with something that I wish I could take back, but rarely remember it till its too late.


There is pain with dementia. The pain is very evident. All one has to do is look into the eyes of their loved and and you will see the pain.
The desperation. The confusion. The stress. The fear. The loneliness. And yes, the pain.


This disease causes great pain, everyday, all the time. It is however the type of pain that is rarely discussed. To do so, many families and patients would have to acknowledge there is even a problem.


Denial is a great pain. We want to go on and act as if nothing is wrong. I do this all the time, although I am not in denial, I still try my best to engage in things like conversations when I can never follow the subject.


Everyday I wonder what I have I said to someone or did that caused them pain? did I inadvertently say something to upset a caregiver, a patient, or someone who I hold dear to me?


Dementia causes me to not be able to answer this question. The loss of memory I have just won't allow me to go back and think, "Should I have said something different, should I have not come across so authoritative?"


So if you are a family member or a caregiver know this, your loved one is in pain. Not the physical pain perhaps we are accustomed to, but the pain of knowing that they are losing their minds, slowly but surly and there isn't a thing they are anyone else can do about it.


I can't explain the pain that is caused by this disease. There isn't a word in the english language that I know of that can.
Think of your worst day. The day you just knew you would not get through no matter what anyone did or said to help you.


That is our day. That is today. And it will be worse tomorrow. There is pain with this disease. It's written all over our faces...

Wednesday, March 19, 2014

Products

Products like Lions Mane, Coconut Oil, MCT Oil, and on and on are just that. Products. None of these or any other product can slow the progression.

At best, one may lesson the symptoms. At best. I have said before if you think it helps, than go for it.

We just don't want claims here that one or more of these things does something it doesn't.

Everyone is looking for a "fix", to which there is none. If any of these products did what they claim, you have to realize everyone would know about it.

News like this would just not be on the internet, it would be national news. And a jar of coconut oil would run you hundreds of dollars if it did indeed do what some claim it does.

I am totally against medical marijuana. One, why would you experiment with a mind altering drug on someone who already has a brain disease?

Second, would you really consider giving your 84 year old Dad a drug that he has never ever had, but yet has no way of communicating what it is doing to him?

What if this intensifies his hallucinations? What if he gets addicted? Some will say you can't get addicted, that is nonsense. But say he does...or say he doesn't.

The problem here is you are dealing with people who can't communicate and tell you how it is effecting him.

One has to extremely careful when giving anyone a mind altering drug. And again, that is what marijuana is.

Does it relieve pain? They say it does. Is it worth the risks? That's something only the patient should be able to answer, and of course they can't.

Morphine is legal to give to patients also, under doctor supervision. But that doesn't mean it can be given to everyone.

There are many, many things one can use for pain. I would think long and hard about anything other than marijuana.

Course as always, that's my personal opinion.

Monday, March 17, 2014

Smoking and Dementia

Having someone wander around the house who doesn't know where they laid the remote controller, or know what room they went into, and what for, yet leaving a lit cigarette in an ashtray is like waiting for a disaster to happen.


I can't imagine not smoking. I have for 30 years. But one day I won't be smoking simply because I will be putting myself and most important the ones that I love at risk.

If you are a smoker, you have to have some sort of incentive to want to quit. A personal choice kind of thing, or the one that is effecting us, is the cost.


I remember saying I would never pay $2 for a pack of cigarettes. I just wouldn't do it. Many have said this I'm sure.

We now pay just over $5 a pack and have for a long time. Here in Ohio once again they are raising the sales tax, better known as the "sin tax", on alcohol and cigarettes.

This will increase the cost of a pack of cigarettes by fifty cents. That is more than enough of a reason for us to quit. We both have talked about it. Now is the time.

Maybe not today, but even with my nerves and depression issues, I am going to give this a shot. We both need to, that's not even an issue. Smoking is habit. I will start by cutting back. Way back.

You become addicted to nicotine. Breaking that habit is hard for anyone. If your loved one does smoke, and they have dementia, like I said this is an accident waiting to happen.


Look back on those nights you heard them up in the middle of the night. Now imagine you didn't hear them up, they had a cigarette and just walked away from it.

Now imagine a house fire, with your entire family in it. I would start today if your loved one smokes to make sure they have no access to cigarettes unless you give them to them.

Seems trivial? It could very well save your life. And the life of anyone who is around them at any given moment.

You can't simply take cigarettes away from a patient. Think of the very one thing you do, and someone just snatch it from you. Do it slowly, and watch them whenever there is a chance they can get their hands on a cigarette.

This is one of those deals where when something horrific happens, you ask yourself, "What was I thinking?".
Please, only let them smoke around someone. Even in the early stages. Trust me, patients forget the littlest of things. And forgetting where a lit cigarette is, is not a little thing.
It is something you would never forgive yourself for if something terrible should happen...

Saturday, March 15, 2014

Long Term Care

When either you, or a family member notices changes in your cognitive abilities, one of the first things you want to do before a diagnosis is get long term health care insurance.
Have this in place before you even go to the initial doctors appointment. These long term health care policies can be canceled anytime if it is indeed something other than dementia.
You can still get long term health insurance after a diagnosis of dementia, but can you afford it is the question.
If you have this coverage in place it can save you hundreds of thousands of dollars if your loved one does indeed need long term health care down the road.
We were never told this, but wish we had have done this. There are all kinds of policies one can get through your insurance company. Check into it before a diagnosis, you will thank yourself for this down the road.

    Friday, March 14, 2014

    Acceptance of dementia is coming, denial is still a problem.


    Everyone has a choice whether to accept this disease, or to ignore it. That is the only choice we all have. Patients, family members, and caregivers.

    There are many who just won't for whatever reasons even acknowledge that their is even anything wrong.

    It's like cancer was in the 60's. You didn't dare mention the "C" word.

    Dementia is like that now. It is getting better. But we have a long ways to go. Not talking about any problem never solved anything.

    But I certainly know many don't. Denial has a huge part to play in this. If they don't talk about it, it doesn't exist or it will go away.

    Why Worry? You can't control dementia



    It does no good to worry about something that may never happen.

    That of course is easy to say. I look at it like this. Cancer is very prevalent in our family. Both my parents and my grandmother died from cancer.

    My sister has cancer, two aunts also died from cancer, and one uncle.

    I have been pretty certain that cancer would be my demise. No one in our family has ever been diagnosed with dementia or any form of it, till me.

    So...who would have thought. I will die from dementia. If of course cancer doesn't get me first.

    I won't worry about either. I choose to worry and try to change the things I can, not waste my time worrying about something that may never happen.

    I may die of cancer. But dementia is gonna get me for sure. But today I have but one thing to worry about right now...where did I leave my coffee cup, or where is the channel changer, or what did we have last night for dinner so I don't fix the same thing tonight..

    These things and many more I worry about, but they are things I can control or change. Worrying if you will get some sort of dementia, that is something you can't control or change.

    There is no pill, no exercise, no regiment if any kind to keep dementia from happening. Just don't worry about it, till it does.

    And even then you will hopefully have many good years to come.

    Dementia resources are lacking, this needs to change

    The very worst thing that is lacking when you get a diagnosis of dementia is resources.
    There are many resources out there, Mp being just one of them, but no one knows where to look at the time of diagnosis.
    There was not on pamphlet on dementia in either my local doctors office or the neurologists. Not one.
    We were not told that we could contact the Alzheimer Association and through them get a local number to call for a chapter near us.
    The only thing we were told was "This is a terminal disease, it will progress and their is no known cure."
    I was then given a prescription for Exelon and sent on our way. This happens way too often. There simply isn't any information given to you at the time of a diagnosis.
    Your sitting there in shock. There are a thousand questions on your mind, but you can't thing of one to ask.
    That ride on the way home from my diagnosis was long. Neither of us knew what to say to one another. Simply because we had no information.
    Not until the next couple of days when I sat down at our computer and researched dementia for myself. I then found the Alzheimer Association 800 number.
    There needs to be flyers, and all sorts of organizations for you to contact, in whatever part of the world you are in.
    We here at Mp would like to see a program started up to where information about Mp is readily handy to give to the family member, and even go as far as to someday have a "mentor" from Mp that they could contact to help them through the initial shock of this.
    It's doable. Of course like everything else it takes money. Everything we are working on implementing here on Mp costs money.
    I have said many times, dementia is a huge business. We can't do hardly anything here that doesn't cost money.
    Thankfully we have been able to do some of these things on our own. Our Mp cards for one is something we have been able to have for our members. We pay for these out of our own pocket, but even that is getting so costly.
    We are looking at several avenues to seek funding. But again, it's a long drawn out process.
    The idea's we have would help our members so much, but like everything else they cost money to implement. We will find a way.
    That's what you do when you are in this situation. If you wait on someone else to do it for you, it simply won't get done.
    In the next several months we will be looking to secure funding for many of the projects we have in mind. I am told all the time, these things cannot happen over night.
    I want it done yesterday. But we have to remain optimistic. You have to keep working everyday, seeking out sources, and hoping for the best. One day we will find that one organization or individual who will see what we do here.
    We have only just begun. Our site here, Mp will never take a backseat to anything we do. But we are working on things that will help patients, family members, and caregivers just like we do here on Mp.
    This will happen. I know these things...
    Unlike · 

    Wednesday, March 12, 2014

    Panic , The Small Stuff



    Debit cards. Most everyone has one, their a handy little item. To me, they will be the death of me.
    When you have dementia, you lose so many things. I haven't handled finances around here for years.
    I don't know who we owe, what we owe, or when we owe it. Most patients are like this. It's not something that anyone is going to do have their loved one who is a dementia patient in charge of finances.
    That being said, we do like to have some sort of control in our lives. Least I do. My wife always keeps a few dollars in my checking account.
    We have a mutual checking and savings but I have had another for years being in business many times, we just kept it open.
    Here in lies the problem. I never use my card. Little at best. Maybe some gas for my truck or the mowers, perhaps a run through a fast food drive through now and then.
    That's about it. We don't keep a lot in there. No need to. Usually less than $100 and that's plenty for me in a month.
    So today Sam and I make a trip to our local walmart. There were a few items I have been wanting to get for the upcoming camping season.
    In total it came to about $55. I am in the checkout, and low and behold my card doesn't work. Now this is not and should not be earth shattering.
    It has happened more times than I can count. And each time it is something I have done. Wrong password, etc.
    But sure enough, panic sets in. Like Walmart is going to call the local authorities cause me card won't work. This is how this disease works on me.
    The littlest thing, and my debit card not working to me is huge, and I am immediately in a state of panic.
    I of course call Phyllis June. She can tell my voice something is wrong. I tell where I am and what is going on. She says, "How much is the total?" I tell her $55...she then says that can't be right.
    She went on to say she just checked it this morning and I had $65 and some change in the account.
    Now, I didn't hear a word she said. All I know is I am doing or did something wrong. Sam's doing his job, trying to keep me in check.
    One of his main things he does for me is keep my stress level at a minimum. He can sense immediately when something is wrong. He won't let anyone approach me, and sits right at me feet looking in a 360° radius.
    Phyllis June tells me to tell them I will give them her debit card number over the phone and this will be settled. They said they can't do that.
    Now I suppose this has happened before. All I know is I am about to run out of the store, and just get home.
    She tells the lady she will be right there and handle this. I go find a bench, out of the way and wait.
    My mind is racing 100mph. How could this happen? What now? Like I said this is now where near earth shattering, but for me its horrible.
    Then, out of no where it hits me. Phyllis June had said I hadn't used my card in almost three weeks. There has to be $66 or whatever in there.
    There's not. sigh. I had just gotten my hair cut. Not fifteen minutes before going to Walmart, and of course used my debit card. Taking it from $66 to maybe $55 or whatever.
    All I had to do is to realize that I had just used it, and this would have never happened. But my mind doesn't work like that.
    I agreed with my wife when she said I hadn't used in over three weeks. Yet, in reality I had just used it fifteen minutes prior to coming to Walmart.
    This was all my doings. Not remembering where I had just come from and that I had used the card.
    Phyllis called me, said she was right out front. Now it's time to pay the piper. I had caused all of this and was so embarrassed.
    I went out, and tried to explain what had happened...she didn't hear a word I was saying. All she said was "You got your haircut and shaved"!!!!
    That's all that mattered to her. All this other was small stuff. She said I am so happy you got your hair cut and shaved. She then went into the store with me and everything was fine.
    I talk all the time about "small stuff". This indeed was "small stuff". But it took my wife to show me just how small it really was. Once again, just by saying four simple words, "You got your hair cut"....all was fine.
    In fact, all was fine all along. I just didn't know it. Thus the life of a dementia patient. We don't like stress, we do what can to avoid it, but sometimes we bring the stress on ourselves.
    Not wanting to, not meaning to. Remember the three important things...
    Are they Safe?
    Are they content?
    Are they pain free?
    Everything else is just "small stuff". I learned a valuable lesson today. I will never remember it. And that's ok...my wife made everything ok...

    Tuesday, March 11, 2014

    Diagnosis of Dementia Is Not The End

    Alzheimer's is progressing, terminal disease with no known cure or medication to slow its progress.

    How many times have we heard that? I have said it myself countless times. But the truth of the matter is we are all terminal.

    Every one of us. No one is getting out of this world alive. To be diagnosed with a six months to live would be devastating.

    But this disease isn't like that. You will hear, or should hear from your Neurologists that this is indeed a terminal disease. However, they cannot and should not put a time frame on your demise.

    I have been dealing with this for the better part of nine years. Officially for four, but had symptoms for four or five years prior to my diagnosis.

    What I am trying to say is, getting a diagnosis is not the end. Not then, perhaps not for years and in some cases decades.

    No one will say it's easy. It's by far the hardest thing I have ever dealt with bar none. But, it is not the end.

    In some respects I am lucky. I know that my time is limited. I may not pass away for ten years or more, but I will lose my faculties long before that.

    This is why I think it is imperative for newly diagnosed patients and their families to talk to those of us who are living this disease now.

    What they will hear from some are stories of Hope and how they indeed deal with this disease on a daily basis.

    But instead when you are diagnosed you are always directed to get ahold of someone who has never had dementia, has never dealt with the symptoms, and has only statistics and innuendoes of what this disease will do.

    I have said it before, and I will continue to say it, "There is not a better source to learn about this disease than from a patient."

    It certainly doesn't have to be me. It can be any patient. Talk to them. All our stories are different because we are all in a different "stage" if you will of this disease.

    What works for me, may not your loved one. What I go through, your loved one may never experience.

    But do yourself a favor and get your information from someone who knows, a patient. It you want to learn about caregiving, you wouldn't ask a patient, if you want to know what a patient experiences you wouldn't ask a caregiver.

    Some won't talk about this disease, ever. But some will. These are the folks that you need to talk to. The ones who make the best out of this horrible situation.

    This is not as some want you to believe, it's not rocket science. I can tell you everything you would ever want to know about Alzheimers cause I live it day in and day out.

    Do that. Ask someone who knows...I will and have answered any questions that are directed toward me. The answer may not pertain to your question, but you can rest assured you will get an answer....

    Monday, March 10, 2014

    Trips in my recliner



    Take a trip, and never leave the yard. That's what a lot of patients do. I take trips almost everyday.

    I set in my recliner, and try to imagine how things were. How we would load up the car with six kids and head to Myrtle Beach.

    How we went to Disneyland, all the theme parks here in Ohio. How we laughed when they went parasailing. How we walked the beaches in search of sharks teeth. 

    How we bought sharks teeth there, and would casually drop them while the kids were following us, claiming the found another sharks tooth.

    We went to the zoo's, went to all their school plays, all the games they were involved in. Taught them drive, how to mow grass, plant flowers, how to bat.

    Jumped on the trampoline for hours. Played catch in the backyard. We camped out and ate smores till they were coming out of our ears.

    Catching fireflies, watching deer graze. Teaching them the firearm safety. Taking them fishing.

    Enjoyed all the chaos on Christmas morning. Every Thanksgiving we sat and gave thanks. Everyday they stay with us, we don't just eat dinner, we talk of their accomplishments.

    We pray together, we taught them at an early age the important things in life. We laughed till we cried, we morned together at our losses.

    All of this I do from my recliner. Memories that I still have. Trips that I take, without every leaving the yard...

    Sunday, March 9, 2014

    Dementia proof your home



    Is your house "dementia proof"? Meaning are things put up, out of reach so that patients cannot use them, or find them.

    Guns for instance. So many times when a male gets this disease, they were avid hunters, or just gun enthusiasts.

    One must make sure these firearms are under lock and key and there is no way a patient can get to these. 

    Sewing machines. One would think what could happen if Mom decides to do something she has done her entire life, sew.

    Can you imagine a patient who's depth perception has been faltering all along using a sewing machine?

    Power tools. There are many who were woodworkers of some sort. Again, letting them have access to any power tool without any supervision is a huge risk.

    Chemicals. Some will say we don't have any chemicals sitting around. All you need to do is look under anyone's kitchen sink and you will find ingredients there that if mixed together can cause lethal results.

    Bathing. Can you imagine a patient running their own bath water? Seems harmless enough, till they get into a tub with scalding hot water. Again, they don't realize they have to control the temperature of the water.

    Cooking. This is a no brainer. There is no way someone in mid to late stages should ever have access to a stove of any kind. There are knobs you can buy to keep them from even turning on the stove.

    Cutting grass. Seems harmless enough. Till the mower gets clogged up with wet grass and they decide to reach into the discharge chute to unclog it, while the thing is running.

    Doing a load of laundry. Can you imagine putting in bleach instead of washing powder. This probably isn't going to hurt the patient, but could really upset the spouse or whoever's clothes are ruined.

    Any medications laying out. They could easily mistake these for candies.

    Sharp knives of any kind is an accident waiting to happen. Hot surfaces be it a baking dish you just took out of the oven, or a cup of coffee or something that just came out of the microwave can cause second and even third degree burns.

    These are but a handful of things that can be dangerous. But one has to keep in mind everything can be dangerous to a dementia patient.

    You never know when a patient can be left unsupervised. By the time you figure this out it is because something has already happened.

    Trying to figure out what could go wrong or injure a patient, at any given time, is a never ending battle.

    Caregivers must "dementia proof" their homes as much as possible. You can only do the best you can when it comes to this. But you have to think of what could happen, long before it does.

    Have a plan, then have another.

    Saturday, March 8, 2014

    Is there any benefit of testing for dementia to see if you are at future risk?



    Are there any benefits to getting a diagnosis of dementia early? If so, what are they?

    There are no tests or procedures that will definitely tell you that anyone has or is going to get dementia.

    The probability may increase, but it's still a educated guess.

    There is a higher risk, of course. Just as if you were a truck driver you are at higher risk to be in an accident just because of the miles you log.

    My thinking on this, there isn't anything that can slow the progression of this disease, or prevent it from happening.

    If you want your son, daughter or if anyone wants to go through tests to see if their risk is higher, I say go for it.

    Just keep in mind, I have had an my diagnosis for over four years now and there is not one Neurologists I have seen yet that will tell me I absolutely have dementia or what type of dementia.

    They tell me I have Early On-Set Alzheimers Disease, only because I was 57 years old at the time of my diagnosis. This is another no brainer to me. So I have EOAD, but if I or anyone else is 65 or older, you have Alzheimer disease simply because of your age.

    Who makes these rules anyways? Do they pick an age out of the sky? Why 65? Why not 62?

    They all use the "catch" phrase, "Dementia, probably of the Alzheimer type."

    In other words, they don't know. When someone says what are the benefits of "knowing early", I say there is none, cause there is will be no definitive diagnosis, ever.

    Some people are under the impression you can go to a doctor, have some tests done and they will be able to tell you if you are at risk.

    I can do that, and it won't cost you a dime. If someone in your family has been diagnosed, you are somewhat at risk of seeing signs of dementia or even getting dementia at some point.

    But to say after some blood tests, or MRI, or CAT scan or whatever other tests that they can tell you, is in my opinion just a waste of money.

    First of all I can tell you, you will know if you have dementia. I knew years before any doctor or neurologists told me. Even then, they were skeptical at best.

    The only true way to know if you have dementia, and of what type is an autopsy of the brain. All neurologists agree on this. So how is it they can preform some tests and tell you are at risk?

    They can't. Like I said they can give you an educated guess. Just remember, because your Mom, Dad, Grandmother, Grandfather or whoever had dementia does not mean that you will.

    I will agree you are more likely. But that is a far cry from being at risk. No one in my family has every had dementia, or any form of it. Does this mean my son will?

    No. This means his Dad was diagnosed and he is more likely to have dementia perhaps. Again, more likely is far cry from being at risk. And besides there is not one thing you can do to prevent dementia.

    Exercise, eating right. These are all good things, but none of them are scientifically seen as preventative measures to keep one from getting dementia.

    Those of us who have dementia, know all too well that the jury is still out on what causes dementia, who will get it, and so on. There is no slowing the process, there is no cure.

    That you can be sure of. But worrying about something that may never happen is like carrying around an umbrella everyday cause it might rain...

    To me, it is a total waste of time to worry about something they have no way of knowing who will be diagnosed, nor do they even know for sure when you are diagnosed if you indeed have dementia, or what type.

    Again, you will hear constantly, "I have dementia, probably of the Alzheimer type"...that is about the most useless statement I have ever heard.

    It tells you nothing. And its a patient who says this, just because some doctor somewhere told them that. Three or four years ago you never heard that phrase, now people spout it like it's an award or something.

    It's mind boggling and makes no sense to me. This of course is just my take on early detection and prevention. Any time you can get early detection from something, its a good thing.

    But with dementia, like I said, its a whole different ball game. It just is...

    Thursday, March 6, 2014

    Nightmares

    I have no idea how much sleep I got last night. I do know, it wasn't enough. As in every other night the demons came. But this time worse than others.

    Not only is this horrify to me, but I worry about others. I rarely remember the nightmares, but I know they are terrible. How is that? Good question.

    I suppose from waking up in sheer panic, sweating profusely, and things that are not even human at times. 

    Last night was different. I did remember parts of the nightmare. I was in a place I used to work at, there was a terrible injury. I did what I could can called for a medical helicopter.

    Packaged the patient, and we got him loaded. Right after we loaded him/her, I checked my pockets and had bags and bags of cocaine.

    I even had bricks of it in my hands. I ran, but couldn't of course. I was arrested, and taken to jail and Sam was not allowed to be with me.

    All this has to do with things that have gone on in my life at one time or another. I have never used cocaine, but I have arrested many who have.

    I did transport many a patient in a medical helicopter. But this was so, so real. all I know is I was running with bricks of cocaine.

    What I worry about is those patients who have nightmares, and can't tell communicate to their loved one, or anyone about them.

    I just can't imagine waking up and not at least in a few minutes getting my bearings. It takes me probably about ten minutes to get myself settled down.

    What if you are at the stage where you can't get settled down? What if you can't even explain what is going on? Many times I don't ever mention these to anyone.

    Phyllis June knows cause she's right here. But still, I don't dwell or talk about them. I can't imagine not being able to, even if I wanted to.

    Just food for thought. If your loved one is up in the middle of the night, or anytime for that matter, don't discount nightmares. They are a horrible thing to deal with...

    Wednesday, March 5, 2014

    Wandering

    I did a radio show yesterday and the topic was wandering. If your loved one does this you indeed know the stress this causes for you the family member and caregiver.

    During the discussion there were many takes on wandering and what can be done to prevent it. My take was and always will be you can't prevent wandering.

    Wandering is caused by dementia. Dementia is a disease of the brain. You can't "fix" it. This is another way where people want a "fix" to the wandering problem.

    Not all patients wander. Some may never, some may wander every chance they get. The thing is it only takes once.

    I was very criticle on facilities. I believe there is no way a patient should every have the opportunity to wander in a facility. If it does happen it's because of something the facility did, or most likely did not do.

    In facilities for dementia patients we all know these places are secured. And in some cases that's as far as it goes. And hence you get wandering.

    There has to be more obstacles in place than just a secure entrance to the facility. Just the fact that patients do wander out of these places tells you that.

    There needs to be alarms on all the exits. There needs to be motion detectors in place, closed caption tv's installed in appropriate places.

    And most of all there has to be more human interaction. If the employees there have to check on these patients every ten or fifteen minutes, then that is what needs to be done.

    Most will say they haven't the resources to do this. What they are really saying is it's a money thing.

    Here's the deal. If your loved one does get out of a facility and God forbid something tragic happens, it will be a money thing for the facility. A money thing in the way of compensation for the family.

    Here locally, unbelievably, we have a facility that has had on two separate occasions, two people wander off. There is a small lake at this facility and both times the patients were found in the lake, having drowned.

    No I can't fathom this happening once, let alone twice. But it did. Patients are going to wander. That is a fact. Not all, and they may not do this constantly.

    But like I said, it only takes once. For those of you who are dealing with this in your home you have to take precautions that this doesn't happen.

    There are many things on the market to help you do this. They have alarm pads that go on the bed that will go off if the patient gets out of bed in the middle of the night.

    You can get a relatively inexpensive alarm device that go on your doors that will sound an alarm if they are opened.

    Some will say secure the door so they can't get out. I am not for this. Of course you want you doors locked but to use a dead bolt or whatever to make it so your loved one cannot get out is very dangerous.

    If there's a fire, and the deadbolt is locked this could be deadly. If you are incapacitated for whatever reason and can't unlock the deadbolt for instance.

    Motion detectors is another inexpensive way to guard against wandering. We have these and alarms on all our exterior doors. We set the alarm pad each night, and if there is any movement in the house, or if a door is open the alarm goes off.

    Again, there is an expense involved with alarm systems, but you have to prevent this happening. It's just not going to go away.

    I talked yesterday about taking a picture of your loved one every morning. If they would somehow get out, the first thing law enforcement is going to want to get a description of your loved one.

    Use your cell to do this. It doesn't cost a thing. And can be so valuable. And of course a medical alert tag of some sort for the patient to wear. This too is priceless.

    Safe Return Medical Bracelet is what I wear. You can find them by clicking the link below. They run about $50 a year, but priceless to what a medical alert tag can provide to anyone who would find your loved one.

    You must takes steps if your loved one wanders. This is not going to go away. And it is crucial to have some things even if they don't wander.

    Wandering like everything else has to start sometime. There are patients who have never wandered before. But all it takes is that first time.

    There is a sense of fear, terror, and sheer panic that comes over the family when their loved one wanders off. You do not want to deal with this. Not to mention what the patient is going through.

    My thinking is with wandering is that the patient is looking for something or someone familiar. This of course won't happen, because of the disease.

    Do anything and everything you can to prevent this. You do not want your loved one to become a statistic, and it can happen in the blink of an eye...

    Tuesday, March 4, 2014

    I don't focus on a cure as I won't see one in my lifetime, I focused on the here and now what's important, today



    Today is one of those days. Just about every morning I search the web. Go to different sites about dementia.

    I get up way early and have a lot of time on my hands. I have done this for a very long time.

    The thing that amazes me is, the story line never changes. People have this disease and are sure a cure will come.

    Maybe not in their lifetime, but a cure is on the horizon. I have to agree. A cure will come.

    What I can't understand is why most people invest so much time and energy in something they cannot change, and something that when it comes is probably generations away?

    I know the answer to this. We all want a cure for this disease. Every one I know wants and longs for the day dementia itself is a memory.

    It's just hard for me to see the writings of some. Some patients, some caregivers, some family members. I wonder if so much time is put into posting and talking about a cure, that we don't take the time to live in the moment?

    I tell everyone I have made peace with this disease a long time ago. I really believe that this is what gets me through most days. There isn't a day that goes by that I am not thankful.

    Thankful for what I have. Thankful for the people around me, thankful for my wonderful family. Thankful that God listens to my prayers.

    When one takes more time to think about something that you have no control over, instead of living in the moment, there is so much lost.

    Especially if you are in the early to mid stage of this disease. I don't spend any time worry about a cure. There are plenty out there who do enough of that.

    I spend time in realizing what I have, what I can still do, what is going on today. I know right now Phyllis June will come home tonight. Be here about 5:30.

    We will eat. We will talk. We will spend the night together. It's the little things that I cherish. Most will think, "Well, you do that everyday". And we do.

    But one day what we do will be but a memory. If you have dementia one of the things you learn in the beginning is what is important.

    The Alzheimer Association will tell you your priorities have to change. Now, not a week from now, or a month. It is important to do things together now.

    That wasn't much of a change for us, we have always done things together. They told us to get our lives in order. Don't put things off. They told us to cherish today.

    All of this was so important to understand. But the one thing that the Alzheimer Association never mentioned, not once, was a cure. They never told us progress is being made in the field of dementia.

    In fact they told us just the opposite. There is no cure, this is a progressing disease with nothing that can slow the progression. And that it is indeed fatal.

    Why is it you suppose they never talked to us about a cure? About all the strides being made for a cure? I didn't give it much thought then.

    But I certainly do now. They were doing us a huge favor by not focusing on a cure. If I had heard this from them, things would be very different.

    I never once searched for a cure for dementia on the web. I never went to sites that claimed to have the latest concoction that would indeed slow the progression.

    I didn't do any of this. What I did was look for people who have this disease that were in the need of the same thing I was. Talk. To talk about this. To support one another.

    Not to find someone who agreed that there will be a cure in my lifetime. But to find someone who agreed that today is the most important day of my life.

    What I can do today, I may not be able to do tomorrow. Or ever again. Why would I want to waste what valuable time I have talking about something that will not benefit me, or in my opinion my grandkids?

    A cure for this disease is what we all want. But sometimes I think we forget about what we have right now. I am so very thankful for the time I have spent already with my family.

    We all must do what we think is right. And if devoting your time to them finding a cure does that for you, that is great.

    If this all ended for me tomorrow, I know I would die in peace. Because my wife and I did what everyone should do. We have taken the time since my diagnosis and made the very best of each day, each hour, each minute.

    Do we talk about a cure to each other? No...we talk about what we can do today, and what we hope to be able to do tomorrow. God willing...that is whats important to us.

    "While We Still Can..."

    Monday, March 3, 2014

    Darkness

    From Rick Phelps ~

    Before this disease I didn't know the true meaning of darkness.

    How your mind can do tricks on you. How it can cause you sorrow, grief, stress, anger, and many more emotions all in just one day.

    This can go on for days on end as a patient. And there are days it is all I can do to put my feet on the floor in the mornings.

    We go through horrible times. We can hours at a time, even days. I am at times so confused I just look at Phyllis June and she knows she has said enough.

    No matter how much she explains it, I am not understanding what she is saying.

    No one wants to die. Not really. It's living with this disease that is our damnation.

    It is in death we will be redeemed. We will one day be whole again. This is what I mean when I say I can't take another day in this world anymore...

    There are resources for caregivers, know when to call for help



    Did you know there are all kinds of agencies you contact to help you? Local ones.

    For example you can go to the Alzheimer Association site and call their 800# to get in touch with a local chapter in your area.

    You can all crises hot line. What you deal with day in and day out is indeed a crisis.

    There is Adult Protective Services if you feel your loved one is in a situation where they need some sort of intervention. Be it the way they are being treated, not being cared for properly, being abused, or just living in a filthy atmosphere.

    There are Elder Law Attorneys. This should be one of the first people you call when you get the news of dementia. They can sit you down and explain what you need to do, how you need to do it, and when it needs to be done.

    There are legals ways to protect ones assets, and an elder law attorney specialize in these kind of things.

    There are what is known as Ombudsman. These are volunteers who work on the behalf of the patient. They are the ones you call if your loved one is in a facility and for whatever reason your problems are not being addressed by the people in charge there.

    They work for you, the family member, and the patient. If you think something like abuse or they are not being cared for and you have brought this to the attention of the administrators at the facility, yet nothing is done...Ombudsman is who you need to call.

    Just google them, and you will find a local number to reach them.

    And there are first and foremost your local churches who will get involved to help anyway they can. Most don't care if you are a member or if you even attend their church.

    They are there to help. Financially in some cases, mentally in others, and of course spiritually. This disease can get the best of any of us. There are agencies that are there to help.

    Hospice is another great agency when the time comes. And if you don't know when that is, just call them. They will gladly come to your home and talk of the options and when it is time for them to be involved.

    And of course Support Groups. This is a biggie. The problem is a lot of times you simply can't get to these because of no one to care for your loved one while you are gone.

    This is where the most important asset you have can be used. Memory People. We are here 24/7, 365 days a year. Someone is always here to help you in your time of need.

    We can't fix anything, but we can offer Support. And on more than one occasion we have contacted other agencies for our members. We have made the calls they just can't.

    We have contacted groups in their area to help them. And we are here just for Support. We all are in this together. And with all the resources out there, you have to be informed of them.

    And use them. Don't talk about using them. Call. The call you make could be the most important one you ever make in your life. You have to when it's time to ask for help.

    That is the number one thing you need to know as a caregiver. Know when you can know longer do this alone and what recourses you have to help you...

    Sunday, March 2, 2014

    I am not dementia, I will not let this disease define who I am ever

    This disease will take many things from me. My ability to walk, talk, eat, and function in many other ways.

    I have long lost the ability to read any more than a couple of paragraphs, I know longer can make decisions, haven't been able to do that for a very long time.

    I forget what day it is, even if I am told every hour. I get anxiety attacks constantly.

    I worry about things I know can't be fixed or changed.

    All of this, the disease has done. And in the end it will indeed take my life.

    But I am still me. And I will be me when I lie there and take my very last breath.

    I am not dementia. I will not let this disease define
    who I am, or what happens. Ever...

    No one should. Ever.

    Saturday, March 1, 2014

    The delivery of the Dx needs to change



    When I wrote my book, "While I Still Can..." the very first chapter is called "Seventeen minutes".

    That is the time it took to sign me in, get to see the Neurologists and get my diagnosis of Early On-Set Alzheimer's Disease.

    There was no "You have dementia, probably of the Alzheimer type". Matter of fact I never even heard this term till about two years ago.

    Back then no one was saying "Dementia, probably of the Alzheimer type" but now everyone is.

    It's like they got re-diagnosed or something. The truth is and what you as a caregiver will deal with makes no difference if it's EOAD, Alzheimer's, Vascular, or any of the other types of dementia.

    We all suffer from some sort of brain disease. And when you are diagnosed they add that little saying now, "probably of the Alzheimer type" for one reason and one reason only.

    They don't know. And that's fine. But why not say this:

    "My name is Dr. Jones. After all the tests we have done, and I have seen the results, we have reason to believe that Mr Phelps has dementia.

    We are not sure of what type, because there are so many types and right now, we just don't know. But he does have and shows signs of dementia, that is the only thing that matters.

    We will begin treatment right away that will include the latest medications that may lesson the symptoms. We cannot give him anything to slow the progression as of right now there is no medication to do that.

    This is a terminal disease to which there is not cure. It is a disease of the brain, the most complex organ in the body and we know little about it right now.

    We are making progress, but for now as I said we will put Mr Phelps on a regiment of medications to help with the symptoms. We will also be prescribing some medication to him for anxiety, stress, and nerves.

    And you, Mrs Phelps should also think about allowing us to give you something to help you with what you too are going through and what is to come.

    My office will provide you with a list of phone numbers to call. The most important right now is the Alzheimer's Association. They will have a representative assigned to Mr Phelps and will answer any and all questions you have.

    I am sorry. We will be here with you. And I will do everything I can to make this journey for you both as humane as I possibly can. Any new medications that come out, we will talk to you about.

    Again, I am sorry."

    This is how your first initial visit should go when learning you have dementia. Most cases it doesn't. Most cases it isn't even close. That is what we need to change.

    My very first introduction to this disease we were told nothing, not where to go for answers, not who to contact, not what is coming next. This needs to change.