Friday, November 28, 2014

The Conference, SIU

We're back home. And it's always good to be home. As everyone knows, every dementia patient has a routine. I talk about this often. You may not realize they do, it may be very subtle, but they do.
I was way out of my comfort zone the last few days with out trip to Springfield, Ill. But I could not have felt more at home.
The four that made this most possible was Maggie Mentel Schaver, Greg Kyrouac, his wife Nancy Kerouac, and of course Roxanne Chamness-Harling.
From the time Roxanne picked us up at the airport, till she dropped us off three days later, these people made sure our stay was delightful.
I have done many of these speaking engagements and have had some very telling after effects. This time, all that I need to do is to get some rest.
They made sure that things were very well planned out for us and everywhere went off without a hitch
When I attend these conferences and see the hundreds of other people there, it is always humbling for me. I feel that they are there for me personally.
Not to hear me speak, but there because they really understand this disease, and are educating themselves more and more to help the patient in every aspect of this journey.
We had the chance to speak to dozens of people one on one. Many of them told us their story, many of them. 
Most times people want answers. This couple had the answers and were doing everything that could be done. It's just nice to be able to talk to others who get this also.
And that is what we did. We talked. We laughed. And we became great friends. This happened over and over with others at the conference.
I think they need to rename this event. It was and is much more than a conference of memory loss. It was a gathering of people, who were indeed are family.
Young and old. Patients and caregivers. All there as one. As I began my segment of the program I told each and every one of them sitting in the audience how it humbled me to look out and see the hundreds who were there.
I had some issues with Saturdays segment. I got lost in the middle of what I was saying a few times. I hate it when that happens, but it indeed did show the how this disease does effect everyone.
I merely looked at Phyllis June Phelps who is always seated right by me during my segment, and she calmly told me what I was was saying, and helped me get back on track of my thought process.
Attending this conference was truly was more helpful to me, then what I could have been to anyone else. I want to thank the Southern Illinois University for having Phyllis June, Sam and I there for this event. 

They certainly know what is going on in the field of dementia and it was a pleasure being there and sharing my story...our story, "While I Still Can..."

Wednesday, November 19, 2014

Speaking engagement at SIU

All my bags are packed, I'm ready to go....we're leavin' on a jet plane. Don't know if we'll be back again.
Tomorrow is the big day. We head out to Springfield, Ill. for a two day speaking engagement at the SIU School of Medicine Memory Loss Conference. 
Another great way to bring Awareness to this horrible disease. As many of you know when I do these speaking engagements I don't use notes or any type of teleprompter. 
I have never liked to see someone tell me there story and have to rely on their notes to get their point across. My story is always the same, it never changes.
I do occasionally lose track of what I am saying, this is why I always have Phyllis June right by me in case I happen to draw a blank in the middle of a sentence. 
I will talk about the struggles of dementia, the stigma we all must get passed, the denial that comes with this disease, and even the acceptance some get once the initial shock wears off.
Some will laugh, some will cry, but all will gain knowledge from my portion of the conference. Rarely does a patient speak at these things, and I am so honored to have been invited to share my story...our story.
My presentation is powerful one. Mostly because it's told from a patients perspective. Not someone who has studied this disease, or someone who has wrote about it, but someone who lives with it day in and day out.
It is indeed the story of all of us here on Mp. Again, I am honored to be speaking at this convention. And will do Mp proud. 
We will be gone from Thursday till Sunday. I will post about the conference everyday we're there and Saturday's portion of my speaking engagement is going to be recorded for us to share here on Mp....
Changing lives, one person at time...

We are slowing changing the stigma of this disease, to where people can and do talk about it. For all too long dementia was like cancer in the 60's and 70's. 

You didn't dare mention the "C" word. Out of sight, out of mind. Not talking about dementia does not slow the progression. And it doesn't help the patient or the family to deny what is happening, and what is going to happen.

We can't "fix" anything, but we do have one another to share our struggles and to support one another. The last thing anyone needs when facing this disease is to think they have to go it alone. 

No one has to do that. That again is the stigma me must change. That and so many other things about dementia. Contrary to popular opinion, you don't have to be 70 or 80 years old, sitting in a nursing home, staring out a window to have dementia.

And at the time of diagnosis, this is not the end. Many people live decades with this disease and many people have productive lives for years. Again, there is nothing good about having dementia. But we need to bring it to the forefront.

Not treat it like the elephant in the room. That helps no one. People will always disagree on many aspects of the disease, but one thing for sure, doing nothing and not talking about it helps no one.

Tuesday, November 18, 2014

The Truth,, There Is No Cure

Trivia questions for the day. 
If you can smell peanut butter only out of one side of ones nostril, do they have Alzheimer's?
If your loved one eats out of too many aluminum pans, can this cause dementia?
If you smear coconut oil over your entire body, will this slow the progression of dementia?
If you exercise regualrly you will not get dementia?
Granted, some of these are absurd at best. Yet each and every one of them has been posted here, or somewhere else on the internet. 
Let's just break one down. They, whoever "they" are, report that if you can only smell peanut butter out of one nostril, that is indeed a sign of Alzheimer's. 
I thought I had heard everything. This just goes to show you, anyone will post anything about this disease.
A few years ago we had a caregiver here on Mp who posted that she was injecting her husband with water. That's right, water. For whatever reason she had read on the internet of course that water injected into the veins would slow the progression of dementia.
Of course we removed the post and private messaged her, explaining that we simply could not have such claims on Mp. I even went a bit further to tell her that this could even be classified as abuse. 
She was livid, and I can't remember either she left or we had to remove her. Either way, the point is you can find anything on the internet if you look long enough.
Dr. Oz is another great example. I personally think he's nothing more than a quack. But be that as it may, who in there right mind believe that any kind of breakthrough when it comes to dementia, is going to be on his show?
It's an afternoon glorified talk show. I sometimes wish people like him were called out for what he is. Some people for whatever reason take whatever he has on his show as gospel. 
It's not. The truth is there is nothing that will slow the progression of this disease. Not fish oil, not coconut oil, not anything. And you don't get dementia from eating out of aluminum pans. 
You just don't. And if you can only smell peanut butter out of one nostril, perhaps you have a cold. Good grief. 
Even the best Neurologists if being truthful with you, will tell you they have no idea what the future will bring with dementia. Will there be cure? Sure there will. 
But now, if you look around, you will see what I once considered reputable organizations demanding a cure by 2020. Here's a news flash, there will be a cure, when there's a cure.
How in the world can anyone think they can demand such a thing? I have to believe we have the very best minds in the world working on a cure. The next thing you will be hearing is there is already a cure, but they are hiding it because there is so much money to made. Just like cancer. Whatever. 
I have no trouble calling these charlatans, and that's just what some of these people are. People who want to instill fear and grand illusion into others. 
Here you will you get the truth. It may be more than you want to hear, it may be more than you are willing to accept, but you will get the truth here.
No sugar coating. The internet is full of these outlandish claims, of cures and things to slow the progression. 
The truth is there is no cure. The truth is there is nothing to slow the progression of this disease. 
Now, someday there may be something that will indeed slow the progression. There are medications now that may lesson the symptoms, but again, nothing to slow the progression.
Just as one day there will be cure. But to demand one by the year of 2020? Just who are you making these demands to? The Government? The scientists? 
If you read what we have here, what is posted here, you can rest assured that what you are reading is indeed the truth. 
I remember demanding I get one more motorcycle. That didn't happen either. Demands are sometimes empty threats. And help no one. Let's deal with getting through today and if we can do that then lets get ready because tomorrow is another day.
With perhaps a whole new set of challenges. A cure will come. But till then, we have each other to depend on. Many will tell you this is the best that anyone can do right now...

Friday, November 14, 2014


Awareness: "Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects, thoughts, emotions, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding."
Sometimes we lose what the very term Awareness means. I have a very difficult time when I read articles on dementia by "experts" in the field of dementia.
Some of these "experts" as they call themselves don't have dementia, don't care for anyone with dementia, and by all accounts are everything but "experts".
I have said many times that dementia is big business. Have you ever taken the time to research things that are on the market for dementia patients. 
So many sites on the internet that have "gadgets" to make your loved ones journey cost an arm and a leg. Everything from GPS products, to the latest concoction to come out that claims to ease the symptoms of this horrible disease. 
Even the health care sector is on the band wagon. They are now building entire dementia care facilities, instead of having a wing for these patients. 
I think the one thing that gets me the most is the year that is being thrown around when dementia will indeed be cured. 
2025. "They", whoever "they" are, are making the claim that by the year of 2025 there will be a cure for dementia. That is ten years away. 
Now no one wants to see a cure for this disease more than I. But for the life of me I can't understand where the year 2025 came from. My thinking is it's a number. A number that was taken out of thin air. 
Something people can wrap their head around. This is just like the studies you will see posted all over the internet. This study is going to do this, and another study is making huge breakthroughs. 
The problem is, you never hear of any conclusion with any of these so called breakthroughs. They throw out this claim that there are working on a drug that will change the things. 
You never hear another thing about the so called breakthroughs. I believe they are no closer now to a cure then they were ten years ago. 
Every study uses key words that most never pick up on. Words like, "may, could, possibly, if, might, should" and many others. They put in headlines what people want to hear.
How they are on the cusp of a breakthrough, how the study is going to change things, and like I said, many even talk of a cure.
They throw out these claims, and then like I said you never hear what the outcome is.
I have always said you will never get any better information about dementia then you will get from a patient. These wanna-be people write their books and make these claims are doing nothing but taking advantage of people.
You want to get Awareness, you want to gain knowledge, you want to understand this disease in a way that no one else can...all you need to do is read our posts.
We don't allow false hope here. We do believe in Hope, just not false hope. When someone claims that there will be a cure by 2025, that to me is false hope.
The Alzheimer Association says that by the year 2050, the number of people with dementia will triple. From 5 million it is now, to over 15 million. So, which is right?
A cure by 2025, or the number tripled by 2050? You tell me. Cause no one else can.
Someone needs to explain to me where they came up with that date. Why 2025? Why not 2020? What is it that they are working on that ensures there will be a cure by 2025? You never hear an answer to this, and you never will.
Do they know something we don't? The closest thing I have seen is studies down with lab rats. Again, I hope that there is a cure in 2025, I hope there is a cure in the next couple of years.
But I know what we do here is more important then what is coming. We deal in the here and now. We help each other make it through today.
When I hear claims of a cure by 2025, even though it sounds good, we are just wanting to make it through today. And if we do get through today, tomorrow starts a new day.
Awareness is much more than just throwing out dates and claims. To bring Awareness to this disease, it helps if you at least either have it, or are a caregiver to someone who is dealing with it.
We do Awareness here. The very fact that we have patients and caregivers together here is something you didn't see before Memory People.
We are changing the very way people look at support. And it's the simplest things that work. We talk to one another. We listen, and we support.
That is all the Awareness one will ever need. Next time someone tells you a cure is coming by 2025, ask them "Says who? And just what is being done to make that claim?"
Their answer is always the same, "They"....and we all know, no one know who "they" are...

Thursday, November 13, 2014

Planning For Placement

Placing a loved one. When to do this? When to think about doing it? When to never think about placing your loved one?
There are two choices everyone of us will have to face one day. Only two. Do you care for your loved one at home, till the very end? Or do you at least think about placement at some time?
The first choice is by far what everyone would want to happen. Everyone wants to care for their loved one, in their own home and do it themselves. 
Some have even made promises to that effect. "Mom made me promise I would never place her" or "I told Dad I would never put him in a nursing home."
Some of these promises were made over the dinner table, some were made over twenty, thirty years ago. And some were made just last week.
Whatever the timing, it really doesn't matter. What matters and what should always matter is the welfare of your loved one.
I don't care if the patient has Dementia, or has terminal cancer, there is a point when some families simply cannot provide the care that needs to be given to these people.
The simple fact is a cancer patient, in the latter stage, may be bed ridden and not need a whole lot of specialty care. A dementia patient, well they can need specialty care at any given moment.
Ever hear of a cancer patient wandering? Or a COPD patient shadowing their better half? Of course not. Yet shadowing and wandering can and does happen with dementia patients.
Matter of fact, you can have both of these things happening to the same patient at the very same time. Caring for a dementia patient is nothing like caring for someone with any other disease. It's just not.
And for whatever reason, not everyone is cut out to be a dementia caregiver. Some will lead you to believe that you are a caregiver, it's a thing you are born into.
Well, no it's not. And trust me when I say, I have seen many a patient who is being cared for at home, and as soon as we left the residence I immediately contacted Adult Protective Services.
Many times the patient is not in a facility because it will mean that much less the kids will get when it comes to inheritance. Sometimes its because of those promises made I spoke of earlier.
Everyone wants to be able to care for their loved one at home. Most would anyways. It is wise to at least contemplate what you will do, should the time come you simply cannot care for your loved one at home. For whatever reason.
Even if this caring for your loved one at home does work for you, what if you had some sort of accident and were not able to care for your loved one? What if you yourself were hospitalized or worse?
You need to have a plan. Life happens. Some are under the impression you just find a facility, and your loved one will be accepted and that is that.
This could not be further from the truth. First off, the doctor is the one who says "yea, or nay" to placement. Family members can want their loved one to be placed, but there is a criteria that the patient must meet.
Then there is the financial part of it. Private pay? Medicare? Medicaid? Insurance? What insurance will cover, what will not?
Is there room available at the facility you have chosen? Do they have what you want in the way of furnishings for your loved one? Do they offer therapy for those who are bed ridden? Does their insurance cover physical therapy?
One should always be thinking about placement, even if placement is not an option. Over the years dementia care facilities have changed drastically.
Gone are the days or smell of urine, gone are the days of tile floors, and dimly lit rooms. Most facilities are wall to wall carpeted. Most have many activities your loved one can get involved in if they choose to.
You must find a place that meets your loved ones needs. Not yours. If your loved one isnt one who will be doing activities, then take that into consideration.
Might it be a situation where you may only need day time care for your loved one? Is there any place that does this in your area?
The bottom line is the patient needs and deserves to be taken care of. If for whatever reason you can not do this, then placement then becomes not an option, but a must.
And this can happen within days. A dementia patient can take a turn for the worse in a matter of days, and never be the same. Are you prepared for that?
My wife goes about 120lbs soaking wet. I go about 175. She could not do what is necessary now if I had to have help several times in the middle of the night for whatever reason.
To think she can, is just wishful thinking. When the patient outweighs you by 50lbs or more, you are just asking for bad things to happen. Someone will most likely get hurt, be dropped, or whatever.
We have long ago made arrangements for my placement. We have everything in my wife's name. I don't have one thing in mine. That will help when it comes to placement.
Which we have talked long and hard about. Not discussing these things and treating them like the elephant in the room helps no one.
Not everyone has to be placed. But not everyone can be cared for at home either. Have a plan. Then have another. In the end you will thank yourself.
And in the end your loved one will be cared for, and that is what we all want...

Wednesday, November 5, 2014

Dementia Knows No Boundaries

Every once in a while I get something under my skin that just eats at me.
We are all like that. Something that you know is wrong but you see so many people buy into it. This is one of those times.
What you are about to read is my take and my take alone on dementia. As a patient. As a person who has dealt with this disease every second of every day for the last eight years or so.
I just finished a book by Pat Summit, "Summit it Up". I of course have the audio version., since my ability to read has long been gone. My take on it is, Pat Summit don't get it. 
The book, which maybe that is what is was supposed to be, was mostly about her being the winningest woman coach in history. 
Which is true. I really think she missed a huge chance to bring awareness to this disease, through the book anyways. I for one purchased the book to learn how she has dealt with dementia and what she is doing to bring awareness.
She has a foundation which Im sure is raising millions of dollars and that is great. However, in reading her book, when she talked of dementia, her take on it was how she was going to beat it. How it was nothing more than an inconvenience. 
How she would keep on coaching, how nothing would change. How the tests meant nothing. They didn't know her and quiting is not in her vocabulary. 
She came across to me anyways as many in the spotlight do. Arrogant. Like they have some sort of special thing going and what has happened to them is nothing more than an obstacle in their way.
I have long said that dementia knows no boundaries. It doesn't matter if you are rich or poor, black or white. Old or young, famous or not.
It doesn't matter if you live in Belair, California or in a remote town in South Africa. It doesn't matter if you have Doctrine in Medicine, or flunked out of high school.
Pat Summit was a great coach. That is a given. But far too many times people like to put "celebrities" on some sort of pedestal if you will, the poster boy of Alzheimer's.
It doesn't work. It will never work. Anyone who thinks the Glenn Campbell's or the Pat Summit's or the Ronald Reagan's know this disease, or ever will like you the common person does is missing the boat. 
I have nothing but compassion for these people. I have dementia, but I also know that it doesn't matter who you are, or what you have done. 
What matters is what you will do. What matters is what you will say. To say something like "This disease changes nothing. I will continue coaching. I am not a quitter" as Pat Summit said in 2011 does no one any good. 
Things will change. Matter of fact, everything will change. And she found out and indeed stepped down as head coach the following year.
It's what you say that people remember. And by saying things like I will beat this, or I am no quitter just takes away all one's credibility. 
When you have dementia there is nothing about quitting. There is nothing about beating anything. You have to come to terms about what dementia is and and will do.
The most infamous thing said about dementia in my mind is the number of survivors. 0. Zero.
There is not one survivor from dementia. And no "celebrity" is going to change that. Now that Mr. Campbell by all accounts is in the final stage there is so much his wife Kim could do to bring Awareness. 
But you don't hear anything about that. What you will hear is the new release of a song he did two years ago. What you will hear is about the documentary that is out. 
Kim could be a champion of caregivers by just doing an interview and being honest. If she, or anyone that has the status like some do would just come out and say; 
"This disease has been devastating to Glenn and our entire family. There is nothing we could do to change the outcome. Spend as much time as you can with your loved one." 
"You must make changes in your life immediately. It doesn't matter how much money you have, what resources are afforded you, there is no cure, there is no slowing the progression."
You will never hear something like that coming out of the mouths of the affluent. You just won't. And that's fine. Everyone deals with dementia in their own way. 
But to say you are going to beat this disease, to say you are no quitter, well that just shows how much you are in denial.
I have always said denial should be seen as a symptom of dementia, not something you go through. It is indeed a symptom for many. Including and especially the so called "celebrities".
Like always, these are my thoughts. And mind alone. I do have compassion for anyone who is or has been dealing with dementia. But I also see things that are not as they seem to be and many things said that are just not true.
If we ran Mp like they sugar coat this disease in some organizations we would not be as successful as we are. You will never hear someone here say I will beat this disease. Or I am not quitter. 
There are no survivors from dementia. And the more we point that out, the more we tell the truth about what is happening to our loved ones the more recognition we will get. 
In closing if you want to hear about the pretty side of dementia, or if you want someone to tell you what you want to hear instead of the truth, then this place may not be for you.
When I hear someone say they are going to beat this disease, it's offensive to me. It's like "Well, I guess they will be fine, I wish I could do that."
It's absurd and it's wrong on so many levels.

Tuesday, November 4, 2014

Dementia Cannot Be Fixed

Everyone has been sitting around at one time or another, when someone thinks a song they heard years back. But no one can remember who sang it.
Or the times where you're talking about an individual and for the life of you, you can't remember their name.
That is what it's like to have dementia. The only thing is, you have this happen to you in the very beginning. 
And as we all know, the disease progress from there. Many times I am asked about what a day is like living with this disease. My answer is "It is sometimes hard to describe."
I remember going to many doctor appointments and each one would ask question after question. Not realizing that we, the dementia patient don't have any idea what is going on or why it is going on for that matter.
Blank thoughts. That's what happens to many of us who deal with dementia. We have blank thoughts. 
Sometimes I just stare out at something for no reason, other than I am just staring, that blank stare, like I haven't got a thought in my head. 
I tell people for me, these times are that just sitting there, staring out into nothing is better then my mind going a hundred miles an hour, which it is most of the times.
I read over and over about dementia patients should be doing things to exercise their brains. This to me is part of the stigma of the disease. It's sort a like if your going blind, someone telling you to exercise your eyes.
Or if you are going deaf, use your ears more. The thing is, once you are diagnosed with dementia, the time for exercising the brain has come and gone.
If you are going blind, you can get corrective lenses, or even have some sort of corrective surgery. And if you are going deaf, the same thing applies. There are steps you can take to help with the loss of your eye sight and hearing.
What is it you can do to help with the loss of your memory? Nothing. That's what. All the brain teasers in the world aren't going to help you with the loss of memory you are experiencing. 
And in my case, all they do is make a bad situation worse. It really bothers me when someone says "You need to do word puzzles to help". They don't help. And they won't help.
People in this mindset think that what is going on is temporary, can be "fixed" or reversed. It can't. 
The very best thing you can do for a dementia patient is let them do what they can do. Don't try to walk them through things they once could do, or things they used to love to do.
Those days are gone. Helping a dementia patient deal with today, what is going on right now, is much more important than worrying about what you are going to do next week, next month, or even next year.
This disease is so unpredictable that you never know how fast it will progress, and what part of the brain it will progress to.
The only thing certain is that it will progress. I am not saying don't do anything for your loved one. What I am suggesting is remember that they have a disease of the brain. 
Everything they say, everything they do, and every way they interact with others is completely on account of the disease. 
One of the things I do best, and my guess is your loved one does also is I say "yes" a lot.
I acknowledge that I know what someone is talking about, even when I haven't a clue what is going on. I shake my head yes a lot also. It's like "Yea, I know. Me too". 
Again, I haven't a clue. But if your not around me much, or don't understand about dementia I have you fooled and that's the purpose.
I don't want everyone to know that I have little to no idea about what is happening. And like I said, neither does your loved one.
In time this won't matter. The disease will progress to a stage that it will be obvious that the patient hasn't a clue what they are talking about or doing.
By then, it won't matter. But for me, and millions of other patients we don't want others to know how we struggle. It's demeaning. It's demoralizing. And it is the way we live every second or every day. 
There are no breaks. There are no times when you can think clearly one second, and not the next. 
The only thing worse than having dementia, is knowing what is going on and not being able to do thing about it. 
I wish I had the answers. No one does. Just do your best, and have patience. Count to ten a lot. What we do, what we say, what we can no longer do is all on account of the disease we have. 
One day there will be something come along to make it so we can at least cope with what is happening to us. A drug that will not just perhaps lesson the symptoms, but a drug that will indeed make our lives more tolerable. 
Where not there yet, and anyone who tells you we are, is just telling you what you want to hear, or what they want you to hear. One day. And that day could be decades from now.
The target date most are spewing out now is 2025. That is nothing more that a date. Doesn't mean a thing. But you hear, 2025, and it gives you hope. 
There is not one thing that is in the works right now that "they" can tell you will be available in 2025. It's a number. That's all it is. 
If I sound disgruntled, I am. We just want to be able to get through the day. A cure would be great, but how about something that will make it so we can function?
Till then, you do what you can. Listening to the so called experts and what I need to do to make this alright. Here's a news flash, It isn't alright, and it never will be alright.
Nothing about this is alright. And as I said, it never will be....

Saturday, November 1, 2014

Do Dementia Patients Feel Pain?

I am often asked "Are you in pain, with dementia? Do you experience some kind of feeling that would be described as pain?"
My answer to both is "No". However, as they say what one patient experiences another perhaps does not.
So, me saying I have no pain doesn't mean a thing. Dementia is a disease of the brain. And that is the very place pain originates, the brain.
I want to think that patients lose the ability to feel pain, they no longer have that feeling due to dementia, but know one knows if that is or could be the case.
Pain can usually be seen on a persons face. No matter what the case. The thing I have always said is this is 2014, there is absolutely no reason for anyone to be in pain for any reason.
They have pain clinics that deal exclusively with chronic pain. The thing with dementia is, you may not be able to tell if your loved one is in pain.
And chances are, especially in the later stages they will not be able to communicate this. Err on the side of caution here. If you have any inkling that your loved one is in pain, make an appointment for them to be seen.
If what happen at their doctors is not satisfactory to you, make them refer you to a pain clinic. One of my greatest fears with this disease is being in pain and not being able to convey it.
This could be something as simple as a horrible tooth ache, perhaps a massive headache, or a host of things that could and do cause pain.
When you loved one has dementia, other things continue to happen. They are not immune to other diseases, or other things that cause them pain.
The controversy over feeding tubes in the end stages is a perfect example.I have made my wishes on this very plain. I want to be fed. None of this denying food for me, or water for that matter. I want a feeding tube if necessary.
My thinking is and always has been these people that claim that denying food at the end of life is not inhumane, matter of fact you will hear that denying food is a common way of the dying process. Really?
If that's true, then I believe whoever is the one who makes this decision should themselves quit eating the very same time they deny their loved one food.
People say that's absurd. Why would any caregiver or family member quit eating just because they made the decision to deny their loved one food?
And that is my point exactly. It is absurd. To deny anyone food. Period. However this is a hot button topic, and if you are one of the ones who have decided to do this, that is your decision.
I just know for a fact that these people who claim denying food and water to a patient in the end stage have no idea if there is pain involved. Who do you know who has been on their death bed, came back and said, "That wasn't bad at all"?
No one, that's who. The very fact they are in the end of life stage is the only reason one would even consider denying food to them.
One must always be aware of pain their loved one may be experiencing. And don't let any doctor just fluff this off. They see your loved on a couple of times a year, in most cases they are indeed just a number.
Stay on top of the pain issue. No one wants to live in pain. And if you couple pain with the inability to communicate it to others, you have a horrible situation.
Again, having dementia is not painful. But we do as patients experience pain from everything everyone else does. Sometimes we just can't communicate it.
Are they Safe?
Are they Content?
And are they Pain Free?
If you answer yes to these three simply questions, you are doing everything you can do for your loved one. Can you imagine being in chronic back pain and not being able to communicate it.
And then have someone turning you every hour or so? Or moving you from recliner to bed? Or just sitting you in a chair that causes you more pain and not being able to say a thing about it to others?
Keep this pain thing in mind. No one deserves a life in pain. No one...