Wednesday, December 31, 2014

Happy New Year

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As we come to a close to 2014, many people look back at the memories the year has left them with. 
Couples were wed, babies were born. Birthdays and Anniversaries were celebrated. 
There were retirements, and new job opportunities. Graduations from high school and college. 
Along with all the great things that happened, there is always the bad things that we must endure as well. 
In 2014, over 500,000 people died from dementia related illnesses. Another 500,000 will die in 2015. 
Every 67 seconds someone in the United States is diagnosed with dementia. 
Alzheimers is the 6th leading cause of death in the United States. One in three seniors die of Alzheimers or some other dementia related illness. 
In 2014 the direct cost to American society was over $150 billion to Medicare and Medicaid alone. 
If you are sitting with a group of people, look to your left. Then look to your right. One of the these three, including you will have dementia in their lifetime. 
Staggering to say the least. Yet, there are no hard facts about what is being done to slow the progression, or even cure this fatal disease. 
You have heard like everyone else over the past year the claims that "they" are close to a breakthrough.
Who is "they"? And why don't we ever hear what these so called studies or tests conclude?
I have read where they are close to slowing the progression in a rat with dementia. How in the world they even know a rat has dementia is beyond me.
Dementia has been around for some 200 years, and the closest we are to preventing it is some kind of testing on a rat?
Here's what you need to know. Until there is an outbreak of deaths, like there was in the early eighties with AIDS, you won't see any progress being made in dementia field.The shear possibility of millions dying from an outbreak of dementia is the only thing that will waken the sleeping giant.
The fact is, unless it is effecting you personally, no one cares. That is the truth. We, here at Mp deal with dementia as a patient or a caregiver everyday.
That is why it is important to us. If dementia hasn't come into your lives in one way or another, it simply is on the back burner.
Most people don't even pronounce Alzheimers correctly. Most people don't realize that Alzheimers is a form of dementia.
Most don't know it's a slowly progressing disease, with no cure, and it is fatal.
You will hear, "Write you Senator or Congressman". I have been to Washington DC and sat across the desk from some of the most powerful men in our Gov't.
And I can tell you without a doubt, they don't care. Sure, they will sit there, shake their head, and agree with everything you have to say.
Their like robots. But everyone of them have this deer in the headlight look when it comes to any form of dementia. Unless one of them are dealing with some kind of dementia with another family member, you won't even get a intelligent answer as to why the funding has been cut for research.
Again, they don't care. They are there to get re-elected. That is the only thing on their mind from the moment they are sworn in for the first time.
It's a club, and you and I aren't in it. We pay the dues, but we are not in the club.
I am sorry I go on a rant this morning over are so called Gov't Officials. Our elected leaders. But when you are a patient, one who has dealt with this disease for some eight to ten years, you tend to become critical in your assessment as to what is being done with the what funding they do have for research.
You never hear anything. I remember like five years ago when the President allocated some 20 million dollars to the study of Alzheimers.
Everyone was so elated. What they didn't tell you is the allocation means nothing. That money never came to be. All he did was propose to Congress that they put this in the budget.
Which of course never happened. But the headlines were all about the money that was being allocated for research. All lies.
We live in world of deception. Many are deceived because they don't take the time to educate themselves as to the things that are going on around them.
I know many people who are caregivers for dementia patients and they aren't one bit better today then they were five years ago, when it comes to caregiving simply because they don't know what to do.
They won't ask for help. They can do it one their own. They wouldn't think about placement because of some stupid promise made decades ago.
Yet they truly believe in their heart of heart that what they are doing is the best for the patient. When of course it is not.
To say it's difficult to be a caregiver is an understatement. And not everyone has to ability to do so. This thing that "I was born to be a caregiver" is absurd.
You will hear Mothers are caregivers, since the birth of their child. No their not. They are Mothers.
You want to know about caregiving, spend about a week with a dementia patient, then come talk to me.
This year has been a very good one for an awful lot of people. But it has brought heart ache to so many more.
The losses I read about here on Mp are devastating. The placement of loved ones. The caregiver who are literally at the end of their rope.
They cannot take another step, yet they do. Because they are caregivers. I will never be able to repay or even come close to thanking my wife for what she has endured and what she will endure in the days, weeks, months and years to come.
Being a patient there are many things, most things, that happened in 2014 that I will never remember. Have no memory of at all. I do know I am thankful.
Thankful for what I have, and do not waste time dwelling on things I no longer have or can do.
My prayer is that 2015 is a good year for you and your family. God bless each of you. And thank you for what you do here. We're all in this together.
And Mp exists because we all walk this journey together. As it should be. As it always will be...
May you have a Happy and Prosperous New 2015.

Friday, December 26, 2014

Dementia, It's Not Ok

What once was, is no more. This is what many a caregiver has trouble with. Christmas time for one. For most patients this is a very bad time of year. 
What happens is everything is different. And change is one thing dementia patients don't do well with.
We don't move any furniture around anymore. But now there is a tree in our front room that of course shouldn't be there. Change. And change is never a good thing when you have dementia. 
It's the whole thing about Christmas that makes it difficult. There is usually not the amount of family around all year long as there is at Christmas, even the smallest thing, like putting a leaf in the dining room table can set a patient off.
It's very hard for a family member/ caregiver to understand why their parent or whoever doesn't like Christmas time when they always did before.
The simple answer is, everything changes with this disease. There is no normal, just what I call a "new normal".
What used to please your loved one, can now for whatever reason petrify them. And knowing this, and remembering it from day to day as a caregiver is so very hard to do and to understand.
This realization of panic because there are so many people in your house that normally has two people can indeed be terrifying for the patient.
This is well beyond the normal stress a patient deals with everyday, all day long at times. Like I said, everything is different starting about a week before Thanksgiving and lasting till about a week after the New Year.
What many don't realize is that this time of the year brings on sundowners also. Sundowners can always be a problem.
Because of the time change, and the lack of sunshine, it's like a daily depression one must deal with.
I think you really have to be a patient to really understand what this time of year does to us. I and probably most patients in the early to mid stage love to have their family around.
But, at the same time, because of this disease, having the ones you love around can bring on a sea of emotions. And most of them are stressful.
Routine. That's what it's all about. Every patient has a routine, you may not know what it is but they do indeed have one.
And even the slightest deviation from that routine can put them in a downward tailspin that can last for days.
Many ask why is this? Again, it's the disease that is doing it. There is no doctor anywhere that can tell you why this happens, because of the lack of understanding of dementia.
I am a patient and live with this disease 24/7. There are no breaks, there are no times where things are "normal" anymore.
Many times people will tell me, "It will be okay." My reply is always, "No it won't. There is nothing okay about this disease and there never will be."
People say this because they simply don't know what else to say. I think, "I'm sorry" would be much better than, "It will be okay".
Because it won't. It will never be okay. And there nothing about what we go through as patients that ever will...

Wednesday, December 24, 2014

Plan For Placement






There are really only two answers. Two choices. Two decisions. Will I place my loved one? Or not?
Many times these choices we make are just like any other. They are made in haste, not thought out, and to be blunt, just wrong.
We usually make these choices under great duress. Simply because we didn't take the time to make them when we should have.
Making a promise twenty years ago, isn't how one decides if their loved one needs to be placed. It just isn't.
Things happen. Life happens. If the patient is 200lbs and the caregiver/family member is 110lbs, someone is bound to get hurt.
Patients in time lose everything. Their balance, their equilibrium, they're ability to do everything. You get a 200lb man leaning on you at three in the morning after having about twenty minutes sleep and you have problems.
Problems that could end up with one or both of you getting hurt. People don't think about what can happen. If they would weigh the bad against the good, the bad would win every time.
You can never place a loved one too soon. People think that statement is harsh, when in reality it's not. There are many things that will happen when you wait too long, and none of them are good.
This feeling guilty for yourself because of placement is a stigma that started long ago and includes any disease, not just dementia. You get a patient who has needs that are far beyond that of what a layperson can do or even understand, but yet they keep them at home because of some stupid promise they made decades ago.
Makes no sense to me. Never has, never will. Now if you have the means, and are able to keep your loved one at home, by all means. This is what everyone wants.
But, very few do, and that is just the cold hard truth. You want whats best for your loved one? Well, they want and deserve to be taken care of by someone who can do what needs to be done.
When you cannot do what it takes because of a bathroom mishap, you have to realize this is not going to get somehow miraculously get better, or you will get better at dealing with it.
These mishaps will continue. And that is just the beginning. There are a hundred things you must deal with daily, sometimes all at once, sometimes one right after another.
On top of all of this, you have to be sure their needs are being met. Are they eating properly? Is their intake and output what it should be?
Are they becoming dehydrated? Have you checked for bed sores, and do you have what is needed to care for them? And are you making sure they are turned once an hour to prevent bedsores?
Yes, if you can do these things and hundreds more, and keep your loved one at home, than by all means do so. But do the right thing. If you can't, don't wait till you cannot do this one more day.
Because believe me, the day you realize you can't do this another day, the person you love will most likely be with at least another week, perhaps longer, waiting on placement.
Rarely does placement happen in just a few days. All kinds of things need to happen. The facility you looked at, if you even did, has to have room. The doctor has to sign off that your loved one needs to be placed.
You have to have the proper payment in place. If it's medicare, medicaid, or private pay, whatever it needs to be handled before placement.
If you loved one is combative, you might as well tell them right off the bat. Cause if they become combative, they will either try to stop the aggression, medicate them so they will not be aggressive, or you will simply have them back home with you if they cannot stop being combative.
Im not talking being loud or what have you. I am saying if your loved one abuses another patient, or the staff. It will happen once. But the second time, they will have to leave the facility.
The facility can't and won't take on the liability of your loved one being aggressive or combative towards it's employees, or other residences. So, if your loved one has an issue with being abusive, or whatever, you may as well be up front about it in the beginning.
Placing someone should be an act of love, and kindness. Somehow, somewhere, the stigma has even gotten to this part of the disease, Where the family feels guilty for having their loved one cared for.
I don't understand it, and never will. I am a patient and have told my wife a hundred times I want to be placed. We have talked about my placement, and have for years, we don't treat it like the elephant in the room. I deserve to be cared for properly. She knows this and would have done this anyways.
But saying it out loud, telling others, then when the time come there is no question as to what is to be done. I wish you never have to battle with placement, chances are you will or you are right now.
Have a plan, then have another. Just remember it is the best thing for both the patient and the family when placement time comes. It just is, no matter what the stigma of this disease says...
Glenn Campbell, the poster boy for the Alzheimer Association, was placed less than a year after his diagnosis. Now my guess is the Campbell's have millions of dollars for private care, they live in a home that if you even see each other it's because you want to.
They could have opted for private round the clock care, but for whatever reason like I said, he was placed. It happens. More times than not. Don't let this happen to you and be the one one night, about three in the morning figuring out you can't do this anymore.
It's not good for you and it's not good for the patient...

Thursday, December 18, 2014

There Is No Set Time For Support

I certainly hope no one feels I don't want to see a cure come down the pike. Any patient would love to see a cure. I am certainly no exception.
The things you hear or read about that will "cure. slow the progression, or even eliminate dementia", to me is like what they say causes cancer. 
Almost everything it seems has the potential to cause cancer in some peoples minds. Smoking of course has to be at the top of the list. 
If there was anything I could do to slow the progression of this disease, I would be the first in line. If indeed it had been approved by the FDA and was available to the general public. 
This as I have stated repeatedly will not happen in my lifetime. Now you have people who claim a cure will indeed happen by the year 2020.
There is even a very well known page on the internet who is widely respected in the world of dementia who has actually came out and demanded a cure by 2020.
My question is, who do you make these demands to, and what are consequences if these demands are not made?
In reality, this is nothing more than hype. Anytime a huge organization comes up with these absurd demands, the one thing you can be sure of they will be asking you for money.
You will see from time to time that we also ask our members for donations for our non-profit organization, Memory People, Inc.™.
The difference between us and many others who are constantly holding their hand out for money is we don't promise or demand anything.
We're not about cures here on Mp. A lot of people don't get that. They immediately think if you are not talking or debating or demanding a cure for dementia, then what are you even here for?
When someone, anyone, demands a cure for this disease what they are really saying is "I don't know what else to do."
The thing we are about here on Mp, is Awareness & Support. Support being the most important in my mind. You can have all kinds of Awareness about dementia, but if there is no Support, then you have indeed failed.
Our main goal is, has been, and always will be getting through today. This morning, this evening, sometimes it's hour by hour.
I don't know of any other organization who does this. The Alzheimer Association does a great job for the most part in what they do. But in my mind, they are more about research than support.
And that is great. We need monies for research. And they probably raise more money than anyone on the planet when it comes to research.
They also do great at explaining what Alzheimer's is, and what to expect from it. They have helped us out tremendously.
But when it comes to daily or like I said even hourly support, no one comes close to what we do. That is the very thing that sets Mp apart from any other organization.
At best any organization will offer monthly or perhaps bi-monthly support group meetings. And some of them have all kinds of restrictions.
This is not support. Support has to be given when it is needed. You cannot set up a time for Support. Let me say that again, and think about it.
"You cannot set up a time for Support."
You just can't. You can have all the support meetings you want to, but the real support is given like I said, when needed.
If you as a caregiver are at the very end of your rope in an hour, but your support group doesn't meet for another two weeks, what good is that?
You need to hear words of encouragement immediately. Not a week or two from the time you are at your wits end. You need to know that you are not alone in this journey.
Chances are by the time a support group meeting roles around, there is likely to be several more things that occur, and some may be even more disheartening then what you dealing with at this very moment.
I am all for support groups. Don't read into this and think I am now against support groups. Some will take this and run with it. What I am saying is when you as a caregiver or you as a patient, or you as a family member need support, you need it then and there.
You cannot schedule a time to take care of anxiety, stress, or even depression. And depression does indeed occur in not only patients but their families.
I have worked on this post for some time now. I have no idea what I started out with, if I stayed on topic, or if it even makes sense.
In closing I will say the most important thing right now, today, when it comes to this disease is Support. Those who want to put all their time and effort into a cure, that's fine.
But if you as a caregiver or family member don't have Support, you will indeed lose this battle long before it ever gets started. You cannot go this alone.
No one can. Those who say they can, don't realize what they are saying. Everyone who is involved with dementia in anyway, needs help. They either do or they will.
That is a fact. The only question is will you know when to seek help. Or will you go it alone, without Support and take this on yourself? If you choose the go it alone route, you will most likely either put your loved one in the hospital, a facility, or even you yourself could have a nervous breakdown.
Know when to ask for help. And get Support. The cure will come in time. Till then this right here on Mp is the best we have.
It just is...

Wednesday, December 17, 2014

There is No Proof Coconut oil cures or slows the progression of dementia


 I haven't tried coconut oil as a remedy for dementia. Course, I haven't done a lot of things that you will hear, read, or come across when it comes to dementia on the internet
I have been seen by the leading Neurologists in the State of Ohio, and he tells me what I need to know, and what I am believe.

There is no cure. There is no "magic" pill. No oil, no exercise, no therapy that is going to "fix" what is happening to me as an Alzheimer patient. No one can rehab the human brain, a brain that is diseased.

I have since my diagnosis made it a pledge to talk about this disease, from a patients perspective, but more important to be truthful about what I am talking about.

If I was to go around the country side telling all the people I have spoken too that if they are not giving their loved coconut oil, they certainly should be because it does wonders.

That is a fallacy. There are people whom for whatever reason you will never change their minds when it comes to coconut oil, fish oil, or some other holistic remedies.

And that is fine. I have always said, "If you think that coconut oil is helping your loved one, so be it". Who am I to say?

But the scientific and all the medical data will tell those who take the time to research it will tell you that there is nothing that will slow the progression of Alzheimer's and there is no cure.

They won't even mention the word coconut oil. This is simply something that has been going around for years. Coconut oil will slow the progression of dementia. And some will even claim it cured them or their loved one.

Again, I am just the messenger here, but that there is simply no scientific data to support such a claim. There just isnt.

What people put on their on FB page, what they believe and such is one thing, but on Mp we have a responsibility to each member there to make sure what is posted is indeed at the very least, believable.

Claiming the coconut oil, fish oil, slows the progression is not being truthful. It is just saying things one either wants to believe or what ever one hears.

Sure, you will hear such claims as this on the Dr Oz show, but that show to me is far from legitimate. Why anyone would base their knowledge of dementia on what some day time doctor show states is beyond me.

Like I said, my Neurologists isn't just any Neurologists, he is the head of the cognitive unit at The Ohio State University. He knows a bit about the disease.

Should I listen to him, or should I believe what someone posts on FB? That is what everyone should be asking themselves.

Till you see coconut oil in the medical journals as something that does indeed slow the progression, statements like that will not be allowed on Mp.

There are thousands of sites that will allow such statements, we simply aren't one of them...

I do agree that progress must start somewhere, but what you see and read about coconut oil is not progress. It is a fallacy plain and simple. It's make believe, and worse it creates false hope.

It boils down to a handful of people believing what they want and ignoring the facts.




The Truth From A Patient, Nothing Cures Alzheimer's

I have had some bad luck from time to time. Broke a few things. A knee, three toes, and an elbow. Even had to have a knuckle on my left thumb taken out, and the thumb fused from an injury. To this day I cannot bend my thumb.

All took some degree of rehab. Rehabilitation. It's always slow and painful in the beginning and the one you get always tells you the line, "No pain, No gain"
No sir-ee, rehab is no fun. But it's necessary to get back to where you were before your injury, or even sickness.

Many time people who have breathing difficulties will have breathing exercises they do to help with their breathing.
These exercises don't cure COPD, or make the disease progress less. Once you lose the elasticity in your lungs, it doesn't come back.

They simply help, to some degree. Some people with COPD or Emphysema cannot do any type of breathing exercises simply because the disease has progressed too far.
The same goes with dementia. There are things one can do that will help one cope with the disease, perhaps make the disease seem better, or some will tell you progression even slowed down because of something they are doing or taking.

Exercise is a good example. Exercise is good for everyone. Anyone who just lays around and does nothing is not going to get better quicker, feel better, or even be better if they don't at least try to take care of themselves.

However, exercise does not cure anything. Just as rehab doesn't cure anything. The whole purpose behind rehab is to get the person back to where they were before the accident, or whatever may have happened.
Some institutions have excellent rehab facilities. Some even specialize in rehab. Like for quadriplegics or amputees.

Many times with dementia we get confused as to what a certain thing will do, and what a certain thing won't do.
The bottom line is you cannot rehab your brain. You cannot have a diseased brain and go somewhere and have it fixed. That simply isn't an option, and never will be in our life time.
As of right now, there is no neurologists that will tell you that there is a cure, or even anything that will slow the progression down, when it comes to dementia.

Not all dementia, but the most prevalent ones. Like Alzheimer's, Lewy Body, Frontal Lobe, Parkinsons, or even Vascular Dementia there simply isnt much anyone can do.
You can and should take the medication prescribed to you. Everyone should do that. Even if they are not battling dementia. If you are having high blood pressure issues, one should be on medication for that and continue that medication till told other wise by a physician.

High blood pressure causes all sorts of problems including but not limited to strokes, heart disease, and syncope episodes, but can be monitored and dealt with, with the proper medication.

This is where one has to be careful as to what one gives their loved one, and what in fact they expect out of what it is.

Take the Holistic way of thinking. People who do indeed believe in this will tell you that natural is the way to go. They will swear by some concoctions.
When you give your loved one a steady diet of any kind of oil and every day you may be in fact doing more harm than good in my mind. Moderation is the key in anything.
And we all know what happens with too much fatty foods. If you use strictly virgin olive oil when cooking yet eat fried chicken everyday, that kinda hinders more than helps.
I know businesses around here who deal solely in the holistic way of thinking and they are indeed making money. And that is fine.

To each their own I say. I know people who will tell you that coconut oil not only helps with their loved ones dementia, but it has indeed slowed the progression.
I know a dentist who told me at conference one time that fish oil cures dementia. I know people who believe if they exercise, they will never get dementia.

Charles Bronson, Charlton Heston, and Sugar Ray Robinson all died from dementia, so that blows the exercise thing right out the window for me.
I doubt there is a dementia patient alive today who exercises more than Sugar Ray Robinson. And he developed dementia and indeed died from it.

The point I am trying to make is...if you believe something you are doing or giving your loved one is helping in anyway, than by all means continue to do this.
However, it is the endless stream of posts that coconut oil does indeed slow the progression and yes, even cures dementia. The thing is, if coconut oil or any other kind of oil for that matter did indeed do what some profess, an eight oz jar of the stuff would run you well into hundreds of dollars.

That is how things work. Remember AIDS when it first came about? In about ten years or so they came out with a "cocktail" that was available that would indeed put one into remission.
It didn't cure AIDS. but it did give some many, many years they would have never had if not for that drug.

What you won't hear is when it first came available, only people like Magic Johnson could afford it. You didn't see any drug addicts getting this cocktail, or you didn't see the common man off the street getting it either.

It was just too expensive. That is what will happen, when someone comes up with a "cocktail" or whatever for dementia. Sure, it will be available, but only the few will be able to afford it.
It will be years before you and I will be able to go to your local doctor and get whatever drug that is invented to prevent or even cure dementia.

So...if you are one who believes that coconut oil, fish oil, or some other holistic thing is going to save your loved one, chances are no one is going to ever change your mind.
I remember my uncle had lung cancer. Back about ten years ago or so. The going thing then to do was to go to Mexico and get treated. They would sell you some drugs that were not available here in the USA, but were sworn to cure lung cancer.

So, off to Mexico my uncle went. He came back over twenty thousand dollars poorer and he died exactly six weeks to the day his plane landed in the USA.
Read about Steve Jobs, the creator of APPLE. He too believed in holistic things, and died because of it.

Anyone can claim anything. And when it is you or your loved one some will move mountains to do whatever it is to have just that one glimmer of hope.
I call this false hope. And there is nothing wrong with it. But that is just what it is. False hope.
When you hear that there are no survivors from those who are diagnosed with Alzheimer's Disease, that is a true statement. There are none.

There is no cure at this time, and there isn't anything that can be prescribed that will slow the progression, and that includes anything legal or anything illegal for that matter.
What we do here when monitoring posts, is we certainly allow posts about coconut oil. Not that long ago, I wouldn't even allow them to be posted here.

Why? Because they simply are not what some people claim they are. But I found these posts to be a teachable moment. We monitor them, and as long as someone keeps to "my love one seems better" or "I think there is some improvement"....those statements are fine.
But when someone starts aspousing that coconut oil did indeed cure their father or that their loved one is on coconut oil and they are not progressing because of it....we do indeed challenge these comments.

Not to make anyone mad, but I am responsible for what is posted here in the end, and I am not about to allow false information to be just thrown out there and not be challenged or even deleted.

Please, keep in mind that no matter what you hear on the Doctor Oz show, or what some store that deals in heathy choices or even what you may read on the internet, there is no cure and there is nothing that slows the progression of dementia.
Nothing. That is the truth. It's not what some want to hear. But all the notable medical journals that are worth anything will tell you this.

This certainly isn't so because Rick Phelps said it is. I am only the messenger here. There is a reason why the Alzheimer Association will tell you in the beginning of this disease to change your lifestyle and do things that are important to you.

They will tell you to do this starting now. Not next week, next month, or next year. Because they are well aware there is no cure and there is no slowing this disease down.

If you learn nothing more from Mp, please take this with you. We all pray for the day there will indeed be a cure. The simple truth is we simply aren't there yet, and in my opinion aren't one bit closer then we were ten years ago.

If anyone disagrees, that is fine. We all have a cross to bear. And mine is telling the truth about what this disease is and what it isn't.
There will be a day, we just are not there yet...

Stress Affects Your Health Both Mentally and Physically

Had to get some blood work done this morning. I always do what the doctor recommends, even if it doesn't make much sense to me. It seems my Leukocytes are high.
One's Leukocytes run high when for one thing you are dealing with stress. Duh.

So, in this scenario my thinking would by going by my past history of stress on account of dementia, they would simply increase the meds I take for stress, anxiety, etc.
During the holidays I tell people all the time, it is very stressful on a patient. And this doesn't start on Dc. 24th.
My stress level increases way before Thanksgiving, and stays that way till way after New Years Day.

It just does. It begins with me with the time change. Fall back as we all know it to be. That simple thing that everyone knows about is indeed a huge change in everyones routine.
Now, couple that with dementia, a disease that in my opinion actually causes stress and you have an automatic increase in anxiety, stress, etc.

Add to that, that the doctors office calls and tells you that you need to have your blood work redone when I had just done this about three weeks ago, and that too is stressful.
They never tell you why the doctor ordered the tests, just that they are elevated and need to be done again. That too is stressful.

I have said over and over, if you talk to a dementia patient one would do so much better. We are not like any other patient the doctor sees.
If they had just called and said, "Listen, Rick's Leukocytes are a bit high, which could very well be attributed to stress and the doctor wants to have them checked again."
That would be a whole lot better then leaving a message on the phone saying I need to have my blood work done again.

I know doctor's are busy. But one would think that whoever makes these calls would perhaps go into some detail about what the problem is.
That as I said when not done does what? Creates stress. The very thing that is creating this increase in my blood.

I am going to have a talk with our doctor about this. I want to anyways, but the reality is I don't see him until April unless something else comes up from the blood work that I did this morning.
And of course by then, I will not have any recollection of this at all. Truth is I won't have any recollection of this tomorrow.

Break down in communication is all this amounts to. And of course the cost of more blood work. I would have thought he would have just asked me if I am experiencing any unusual stress and why.

I could have told him, yes, and why. That alone would have led to an increase in my meds, which is where this whole thing is heading to begin with.
We love our doctor and would not change doctors for the world. Matter of fact, he semi-retired and kept both Phyllis June and I on as patients. which he passed most on to other doctors in the office.

The moral to this story. Dementia patients this time of year experience a great deal more stress than usual. That is a fact. So whatever changes there are in ones motabilizim, that indeed will happen this time of year.

Ask. That's all I am saying. Talk to the patient. You would be surprised what you will find out.
In my opinion a patient who is in the early stages of this disease, is a wealth of information. Yet they don't use that to their advantage.
If I was a doctor, a general practitioner or a neurologists, I would use the patients that indeed can tell me what is going on with them.

To this day, I don't get that. I would like to see a seminar of physicians who are in room with two or three dementia patients in the early stages and them learn from one another.
Somewhere along the line the medical profession has for whatever reason not listened to dementia patients. I assume the obvious. We are dementia patients and along with that comes the obvious.

Confusion, memory loss, lapses in judgment, and ramblings. But not all patients are like this. I for now can hold a intelligent conversation about this disease with anyone who wants to do that.
The problem is, not many want to. Why is that? That is the million dollar question.
There are countless posts I have done on Mp over the years. Some make sense, some not so much. But the reality is people learn from them.

This is the very reason Mp works. We talk to one another. The medical field would do good to try this. Dementia patients are not a shell of a human being.
Least not in the early stages. Ask them. Ask me.
I can tell you about dementia. Millions of patients can. But you better ask, "While I Still Can..."

Monday, December 15, 2014

Ten Days of Christmas

Ten days and Christmas will be here. Probably the hardest Holiday for a dementia patient. 
With me anymore than three can be crowd. Couple that with wrapping paper flying everywhere, kids all excited, music playing, everyone talking, the dogs all excited...you have what I call the perfect storm.
I never want any of our family to compromise this holiday for me. No patient would. I still have the ability to remove myself from all the confusion.
I simply walk outside with Sam if things get to chaotic. Some patients are no able to do that. One has to remember, what once was, is no more.
Grandma may think she can prepare the festive meal, but in reality can hardly be trusted to boil water. 
Or Grandpa who used to love to have all the grandkids around him opening their presents, that now sets off a stressful situation that could take days for him to come back from.
There isn't a patient who would want to put a damper on this time of year for anyone. But, once again, it is the disease. 
The thing about situations like this, they do become more difficult to do. So far, I am able to handle Christmas Day. It's difficult but everything about this disease is. There will come a time when I cannot. 
It is indeed stressful. It has already started for me. We have a Christmas tree in our front room, which of course does not belong there. 
This indeed puts a real damper on keeping things the same. I tell people all the time, your loved one has a routine, even if you don't know it...they do.
The simplest thing to you, as in putting up the Christmas tree, can throw your loved one into a horrible stressful situation and could kick into depression.
This doesn't happen with every patient. We are all different. Some I know love this time of year. I do not. It has to do with all the confusion. Having to be at a certain place at a certain time.
We then have Christmas dinner here for our family, which I do love having them here, but it makes for a long, confusing, stressful, day.
Keep this in mind. Tell the kids, "Inside Voices". In other words, talk, have fun, but keep the yelling to a minimum. Better yet, tell their parents well in advance.
Kids will be kids of course, and it is Christmas, but you as a family member or caregiver of a dementia patient have the responsibility to keep the youngsters under control.
If things do get loud and out of hand, then correcting them is useless in most cases. They have to understand that they need to have fun, but keep their voices to a level that doesn't sound like fingernails being run down a chalkboard.
Again, I know how kids are. And we love them for it. But I also know first hand what a patient goes through during this time of year.
With all this being said, it is more sincere hope that each and everyone of you have an uneventful Christmas Day. The stress that this day causes dementia patients starts way before Christmas.
Just a tree in your living room, can set of a series of anxiety attacks. It isn't supposed to be there. The lights as beautiful to you as they are, can drive a dementia patient crazy.
I really think I will get through this year, as I have others. Keep my distance, just go to another room or outside for a bit if things get to hectic for me.
I wish things were different. But trust me, you have to look out for your loved one. Make some calls days before the big day and explain to your other family members that things are different now and keeping the chaos to a minimum is not as much as request as it is a must happen.
As a caregiver/family member there is nothing you can do to prepare the dementia patient for what is going to happen in the next two weeks.
Trying to explain it will not work. That is why it is imperative that other family members realize what is going on and how they must conduct themselves.
Chances are most family members don't come around much, and the first thing they do is bombard the patient with questions.
"How are you?", "You don't look sick", "What can I get for you? "Do you remember?"....and on and on. What is happening here is there are sometimes up to 12, 14, 16, even more people in a house that just earlier there were perhaps two.
It is my job to watch out for the patient. I want everyone to have a wonderful holiday, but if that in any way puts your loved one is a stressful situation, one that may take them days to recover from, then whatever or whoever is causing this needs to be removed from the equation.
This I know sounds harsh. But as a patient, I know first hand what this time of the year does to dementia patients. I know all too well...

Wednesday, December 10, 2014

Dementia Is Expensive


Reading some posts today and something hit me. Money. Many times I have said if you think you have enough money when dealing with this disease, think again.
Unless you are individually wealthy or have some sort of insurance that covers every aspect of the complications that go along with dementia, you indeed will be financially burdened.
That is a reality. Take for instance a helicopter ride. What you say? A helicopter ride? What on earth does that have to do with a dementia patient.
I can tell you. In EMS when dealing with some patients their mental state is very important. One can suspect a stroke or the beginning of one just by ones mental status. There are other signs but the mental status is very important when making a decision as to what to do and where this patient needs to be treated.
Now, that being said, you don't in all likely hood know this person, and will have to rely on past medical history given by a family member there on scene, and you must err on the side of caution.
When someones mental status is in question, many times we call what is termed a "Stroke Alert". This gets all kinds of things happening.
It is the beginning of what you hear called "The Golden Hour". Meaning it is crucial to get this patient to a trauma center as soon as possible, to deal with what appears to be a stroke either happening, one has happened, or one may be going to happen. Strokes are indeed medical emergencies, they are and can be fatal.
This all hinges on the EMS personal on scene, what they witness, what the family says, and yes what the patient says and does if they can indeed interact at the time.
When a "Stroke Alert" is called, like I said it gets a huge number of things in motion, one of them being a medical helicopter. You use these in area's like where I live, even though we have a local hospital, they are not equipped to deal with such medical emergencies.
And a stoke is indeed a medical emergency. So, you put a helicopter on what they call stand by. Meaning the flight crew then commits to this run, they map out the location, and the pilot gets the helicopter up and running.
Then there are all kinds of public services that are called into deal with this situation. You have to have the fire dept on scene to set up a landing zone for the helicopter, you have to have police on scene for traffic control, and you in the midst of all this have to be constantly monitoring and doing procedures on the patient.
So. when EMS is on scene and they suspect a stroke has either happened or is happening there are many things that done. Immediately. Now don't get me wrong, when a helicopter is called for, there are many things, many criterias that have to be met.
But the thing that is important here is the utilizing of the helicopter. That cost alone can range in the 15 thousand dollar range.
Now someone has to pay for that. Most insurance companies that I know do not include helicopter transportation to the hospital as a mode of transportation that they cover.
They just don't. The only reason I bring this up is there are many, many unforeseeable things that can and do happen with dementia patients that you simply can't prepare for.
Altered mental status is one of the requirements that meet and is used to determine if someone indeed needs to be flown to a near by trauma hospital.
And altered mental status is an everyday occurrence for a dementia patient. See what I am getting at here? You take someone in the eighties, and the spouse is also elderly...add to that the confusion of the emergency and God only knows what EMS will get for a medical history on a patient.
There are so many costs that one cannot and does not even think of when it comes to caring for a dementia patient. Now I am of course not saying that your loved one runs the risk of being flown to a trauma center because of an altered mental status.
What I am saying, it has happened. I have seen people flown to from a scene of a car accident where altered mental status was questioned and when they arrived the only thing wrong with them was too much alcohol in their system.
They do, right or wrong, have a helicopter ride to pay for then. It happens. Not often, but it does indeed happen. Anyone who tells you it doesn't is either being dishonest or just telling you what you want to hear.
How does one prepare for not being flown out in a case like this? Communication. That's how.
You have to be able as the family member, or caregiver to describe the altered mental status they are seeing is normal. You have to be able to give EMS a concise and accurate medical history.
And all of this has to be done in the middle of an emergency. Be prepared for the unknown. Cause it will happen. You think you have all the bases covered, but you don't.
And you never will, cause things change. And life happens. Just be aware, that this disease can and does cost many families their life savings. The nest egg they had for retirement or vacations doesn't last but a few months when you are dealing with the cost of nursing homes, and skilled care, and of course, helicopter transports...