Thursday, May 28, 2015



The hardest part is knowing...

September, 2012

I think the hardest part of this disease is realizing you have it. Knowing a bit of you is being lost every day.

Knowing one day, just not what day, but one day you will not recognize your family. The people in your lives, the caregivers if you will, struggle with this daily also.

I overheard our nieces talking over the weekend, asking each other if I was alright, if I had done or said anything I shouldn't have.

Knowing that these two have to ask questions like this just breaks my heart. They see their Uncle Ricky slipping away. I was unable to do the things I used to do with them at the water park.

I watched them, thinking to myself that I always hated to see parents not interacting with their kids at events like this. And now, I was or have become the very thing I hated.

Its the disease, its always the disease. But just being there with them, was enough for them. I know that. They wanted me to go down the super slides with them, as we have always done in the past.
But with this disease, it would never allow me to stand in line, in close quarters with hundreds of people. Even with Sam, there are limits, things I just won't do to bring unnecessary stress upon myself.

The Uncle Ricky they once knew, who could do all these things and much more, is no longer here. I do the best I can, with them. And that is enough for them.

But I see it in their eyes. I hear the whispers to Aunt and Grandma Phyllis, "Why won't he get in the water?" She just says, "He can't girls..."

This and much, much more is what this horrible disease takes from you. I posted that the weekend went fine. And in a sense it did. I was not stressed, no anxiety, or fear.

But, one must know that the person I was, I am no more. Its hard for adults to realize this, let alone kids...

I wanted to post this so everyone knows and remembers that what once was, the person your Mom, Dad, or whoever it is, is no longer. What they once loved to do, now could scare them to death. What they once loved to eat, they may now hate the very smell of it.

Its the disease that does this to us. Its always the disease. When I say or do something I would not have done in the past, I find that I don't catch it anymore. I am slipping. We all are who fight this disease.

It is without a doubt the hardest thing anyone will deal with. Patient, or family member.

Friday, May 22, 2015

While I Still Can, Sale and Sneak Peak

http://www.amazon.com/While-Still-Can-Rick-Phelps-ebook/dp/B00814DRRU/ref=sr_1_1_twi_2_kin?ie=UTF8&qid=1432301163&sr=8-1&keywords=while+I+still+can

One of the best buys you will ever see. I remember when we were under contract and had to sell my book at the price they set. 
I think it started out at over $10 for the ebook addition. It's not that I didn't think my book was worth $10, it's just that like I been saying over and over, it'a all about the money.
Everyone wants their hands in the till. The book had to sell for that price for everyone to get a piece of the pie.
Well, we are no longer under contract with the publisher, and I have a say in what price the book sells for.
We went from the $10, to $3. Why is that? Why would anyone drop the price so drastically? 
It's all about Awareness. Times are tough, and as a patient, I know the struggles this disease puts on the families finances. 
There are times when $10 is used for bread, milk, or to be able to afford part of the medications that is a must for your loved one.
I wanted to sell this book at a price where when people see it, and the price, they don't think twice about purchasing it. 
We never expected to get rich off of the sales of "While I Still Can...", but I did vow to get this book in every persons hands that I could. At a price where anyone could afford it.
There are tons of ebooks sold on Amazon, Barnes & Noble, etc, that far exceed the $10 range. And they are very successful financially. 
That is not what we were or are looking for. We want to get this book in the hands of every caregiver possible. Thus the drastic cut in price.
This book is by far the most knowledgeable book you will ever read about dementia. How can I say that? Because it is a book written by an actual dementia patient. 
Not someone who has studied dementia, or works with dementia patients. Not someone who followed their loved through this disease. This is a book done by a patient.
You will laugh, you will cry. But most of all you will gain knowledge. And knowledge is power in the world of dementia.
I have included in the post the very first chapter of the book. I go from the very beginning when I was diagnosed and tell of the journey this disease has taken us in.
I hope you enjoy the first chapter of "While I Still Can...". But more than that, it is Phyllis June and I's passion to get our book into your family.
Here is the Forward and the very first chapter of "While I Still Can..."
Seventeen Minutes
It has been said that the course of one’s life can change
in a matter of minutes. I’m about to tell you the story of
a man and his beloved family whose lives were turned
upside down one summer morning, altering their paths
forever.
Rick Phelps and his wife, Phyllis June, were driving the
eighty minutes from their home in northeastern Ohio to
Zanesville, for a first time appointment with a neurologist.
After locating the office building and parking the car, they
went in and introduced themselves to the receptionist.
As a new patient, there were the standard forms to fill out
attached to a well-weathered clipboard, so Rick sat down
and filled in his name and address. Nothing seemed amiss
until he came to the question of his date of birth; at
this he drew a complete blank! Seeing he was struggling,
Phyllis June, due to experience, took over completing the
rest of the information and handed it back to the woman
behind the counter.
It became obvious that Rick was growing increasingly
uneasy. His hands were fidgety, and his eyes were shifting
nervously to and fro, examining everything in the room
from the deep blue carpet to how the furniture was
coordinated to match the floor and the earth-toned
cream-colored walls.
As he continued to look around, he found himself
wondering what medical condition the other people in
the waiting room were enduring. It astonished him that
they didn’t seem to have a care in the world. “How could
they be in a neurologist’s office and not seemed to be
worried?”
Finally, Rick was called into a small examination room.
He got up onto the butcher-papered examination table
while Phyllis June sat in a chair close to him. Their ears
were alert to any slight noise, hoping to hear the turn of
the doorknob. Waiting for what felt like an eternity, at
long last a tall graying man in his sixties entered the room
and introduced himself as the neurologist.
Having already worked out everything he was going to
say about the history of what he had been experiencing,
Rick was about to open his mouth, but he never got a
chance to utter a single word.
The doctor immediately dominated the conversation,
informing the two of them that he had received all the
results from the tests that the general practitioner had
ordered, and he saw no reason for Rick to take any of
them over again. Instead, what the doctor wanted to do
was give Rick his own mini-mental exam in order to check
his cognition. He asked Rick to count backward from one
hundred, which he failed. Next he asked him to draw the
face of a clock, making the hands read 11:15; he failed
once again. Finally, he told Rick a short story, asking him
to tap his leg every time he heard the word “I.” This too
was a failure.
Putting his paperwork down, the doctor looked first
at Phyllis June and then, more intently, at Rick. He said
without hesitation, “I’m certain you have MCI/EOAD.”
Confused, Rick straight out asked, “What the heck is that?”
The doctor explained, “It’s mild cognitive impairment of
early-onset Alzheimer’s disease. I’m going to prescribe a
newer medication called Exelon which comes in a patch.
Change it every twenty-four hours and I’ll see you in six
months.”
That was that. So within seventeen minutes of entering
the building, Rick Phelps and his wife, Phyllis June, found
out that, at age fifty-seven, Rick had Alzheimer’s, a fatal
disease!
They soon learned that Alzheimer’s is the fifth leading
cause of death in the United States.
Their lives would never be the same.

Shadowing


Shadowing. Shadowing is when the person with dementia attempts to keep his or her caregiver in their sight at all times, following them like a small child would his or her parent. Shadowing can have the Alzheimer's caregiver feeling smothered and their personal space feeling violated.
The thing most misunderstood about Shadowing, is when it is explained by a person who doesn't even have dementia. This happens a lot with dementia of any type.
You get the professionals telling you what a symptom of this disease is, how their loved one will react to it, and what to do about it. All of this, they can do for you without knowing first hand about dementia. 
I could and will never understand how this happens. Dementia is the only disease, where people who don't have it, know more about it then the very people who are diagnosed.
A lot of this has to do with money. Dementia is big money. From books, to speaking engagements, to movies, to television, to seminars.
All of these have one thing in common. Money. When you reach a certain pinnacle or stature, for whatever reason many think they are experts.
In all my time working EMS I have never seen anyone have any advice for a cancer patient or cancer caregiver like you do with dementia. Pick any other disease, heart disease, diabetes, vascular issues, it doesn't matter.
Dementia is the only disease where all the experts are not patients. Why is that? I haven't a clue other than what I have already explained, money.
I can tell you in the last five years I have worked with literally hundreds of people, organizations, writers, authors, movie producers, talk show hosts, and on and on.
In every scenario there was an agenda. If not money, their agenda was fame. To get their work out their, and to sell whatever it is they are pushing down the throats of caregivers at any given time.
It sickens me to see some of these charlatans reach into the pockets of some of the most vulnerable people I know, caregivers. Anything from the latest GPS gimmick, the watches to get their loved ones home, to shoes they can wear to track them, to concoctions like coconut oil or some other holistic remedy that is a "fix" all.
They will sell you brain teasers for your loved one. Who in their right mind thinks a dementia patient needs brain teasers? They will sell you lights for your home, plates for your dinning room table, and they're biggest ploy to me is when one of these so called experts comes out with a tell all book.
They been a caregiver for "X" amount of years perhaps, some of them are not even that. Yet they are experts.
I once sat beside a gentleman at a speaking engagement I was doing, actually he came to our table after I had spoke, and he explained to me that he indeed was a doctor, and that the fish oil pills he was promoting did work in slowing the progression of dementia.
Phyllis June had to contain me. She kicked me so many times under the table I could have brought abuse charges against her. She knew what was coming.
When I began challenging him, come to find out he was a retired dentist, who was in partnership with a company who supplied...you guessed it, fish oil pills.
This is but one instance, I could give you hundreds I have seen over the years.
So, back to my original thought, Shadowing. Why do patients do this? I haven't a clue. And I am a patient. And that is something you won't likely hear from most. Many have all the answers, but they are just what you want to hear, not what you need to hear. From the "professionals".
But, if you google Shadowing in a dementia patient you will find hundreds of articles on it...but how many by a dementia patient? None.
When I catch myself shadowing say Phyllis June, for me it is because I have this internal fear of being left alone. In a store for example or even here at the house. For just a few seconds can seem like an hour.
One of the first things we lose as patients is the sense of time. And being alone for just minutes can panic any patient. Thus, you get shadowing.
Now there are many other reasons why a patient would shadow their caregiver or family member. And there are many reasons shadowing is done that you nor anyone else will ever figure out.
But rest assured, if you want to know about shadowing, do what I always say to do, ask a patient. If your loved one isn't capable of explaining why they do this and many aren't, then try to find a patient who can.
Sometimes I know this can't be done. But please, please, please, don't take everything you read, hear, or even watch on Dr. Oz to be the gospel when it comes to dementia.
The worse this disease, gets, the more likely you will see shadowing. And that in time will cease. They simply won't have the ability to shadow anyone.
I can only imagine how frustrating shadowing can be to a spouse, or caregiver. But only a patient can explain to you what is like to have the need for even doing this.
And sometimes, most times, even they don't know. That is dementia. And that is what we patients deal with every minute of every hour, of every day...unlike the day of a "professional" in the field of dementia.

Tuesday, May 19, 2015

Dementia Patients and Dealing With Death of Loved Ones


When you have dementia just about everything becomes a struggle. From doing daily tasks, to trying to remember anything. 
That leads to stress, one of the very first things the Neurologists will tell you to stay clear of, stress. 
Which is almost impossible. We live in a stressful world. We just do. Could be money issues, job related stress, family issues, or just the stress of having dementia.
I have encountered all the above at least once. I am now dealing with something that is always beyond our control. Death.
Death is something that we all must deal with in time. The passing of our Grandparents, and Parents. The passing of other family members, friends, etc.
From the day we are born, we are destined to die. No matter what your religious beliefs or lack of, you are not getting out of this alive.
Death has came into our lives, and what is even worse, it is just lingering. I have a cousin who is critically ill. She has been for two months now, but for the past week or ten days she has been on deaths door.
She was put on Hospice about the same time, and has been moved from the hospital to a facility, under Hospice care. She is a diabetic, and a vascular nightmare.
I go daily to see her, we all do. Both sets of cousins that is, other family members don't seem to have the time to do this. 
She is a shell of a human being now. She barley speaks, when she does its a mumble. She barley eats, and has now in the last two days refused her pain meds. 
I am along with another family member, her POA when it comes to her medical. But the choices she is making, like not taking her meds, she can because she of sound mind. 
Not sound body, but sound mind. Every time I go to see her, I die a little more right along with her. 
We were always close growing up and became closer as adults. She was the other camper in our family. And since could no longer have her camper, she has enjoyed ours with us for the last few years.
There is nothing any more stressful than watching someone die. A little at a time. I told everyone around me a week ago she wouldn't last two, maybe three days.
Here we are about ten days in and I can't figure for the life of me what is keeping her alive. Septic shock has set in. She isn't taking any fluids to speak of, she is in pain no matter what Hospice does.
About three weeks ago she said, "Can't you see that? Can you see? I can't believe you can't see that, it is so, so beautiful."
When asked what she was seeing, she said she was at the gates of Heaven. She has talked to God.
This woman is legally blind and has one leg. Diabetes has slowly taken her life, made her arteries a nightmare and has kept her from healing for years.
Knowing that she has seen the gates of Heaven has helped me get through this. She has never hurt a person in her sixty four years on this earth. But you can never be too sure about where you are going till the end.
She told us with her own words. She has seen the gates of Heaven and spoken to God.
I really think the stress this has caused me has taken its toll on me in many ways. As it would anyone, especially a dementia patient. But you feel guilty just thinking about what it has caused yourself, when you see her laying in that bed, dying a little at time....

Monday, May 18, 2015

We Just Want Answers

From Rick Phelps  ~ We just want answers...
July, 2013
"Why does my love one act the way they do? Why do they constantly do absurd things, say hurtful, hateful things?"
"Can someone explain this to me?" "I just don't understand."
I can sum this up for you in three words. It's the disease. It's aways the disease. I know that isn't the answer anyone wants to hear, but it is the answer to this and all other things patients do. 
Many times people just want to know why things are happening, and just saying "it's the disease" is not the answer they want or need to hear. 
I can tell you I do some really off the wall things. Everyday, sometimes many times a day. Things I would have never done several years ago. 
Phyllis June doesn't ask why anymore. She knows. It's hard to understand and remember this is a disease of the brain, and it does and will progress. 
If you think back, things your loved one has done over the days, weeks, months, or even years they always get more bazar. 
Some hide things. Some say things they never would have. Some argue adamantly, when you know they are wrong.
Some say their loved one knows better, that their love one is just making life miserable for them and this is nothing more then the caregiver/family member lashing out and at the end of their rope.
Anything and everything they do, the patents, it is and always will be on account of they have a brain disease.
Even if you do get it, or understand it, you will never ever come to complete grips with it. Just because the behavior you don't understand, is only the beginning of what is to come.
If you know someone who has been in a horrific accident and received a traumatic brain or head injury, you seldom hear anyone ask why they can no longer function or do the things they once could.
You don't hear this question, because you can see, you know what happened, you understand that that something, some horrible accident caused this whole thing.
With dementia, you can't see anything. All you see is your loved one slipping away a little at time. And there is nothing you or anyone else can do about it.
And that is not the answer any of us want to hear. If we can see things, we tend to understand them better. When your brain is taken over with this disease, for no apparent reason we not only don't understand it but we want answers.
And saying they have dementia simply isn't enough for some. It simply isn't...

Tuesday, May 12, 2015

When You Place Someone Your Caregiver Role Does Not End

 

When a patient is brought into whatever facility the staff needs to know who this patient is. 
Not just their name, and their families name, but who this person is. What are their likes and dislikes, are they effected by noise, do they get agitated when around other people, what where their hobbies before dementia came into their lives? 
Did they enjoy golfing, hunting, or perhaps just being outside. What are there quirks, what is that makes them feel safe, content, and above all pain free. 
And on and on. I know there is only so many staff assigned to each patient, but how do you take care of someone, if you don't know this person?
We tell members here all the time, if you are planning some sort of respite, make sure someone who is watching your loved one knows them. Understands this disease, knows what sets them off, what comforts them, etc.
If the facility you choose knows little more about the patient then their name, then how can they interact with them?
Again, staffing at these facilities are generally at the lowest they can get by with. It's called the census. If the census is down, layoffs begin.
Census is the number of patients in the facility. And not just dementia patients, but all patients. Sometimes it's not uncommon for an aid to be taking care of several patients in an average shift.
I totally disagree with this, but this is how things work in the real world. Here's an example, I have been in facilities when it is dinner time. The one I am referring to holds about thirty patients in the dinning room alone.
There is two aids in there doing the feeding. Two. This to me is not acceptable. But it is the reality. Not all residence go to the dinning room to eat, so there are dozens of other patients who need to be fed throughout the facility also.
At the very least, these patients are not eating a hot meal, at the very worst the chances of choking is off the charts. I look around in these situations and there are patients sitting at the table, some even strapped to a wheel chair.
They have no earthly idea where they are or what is going on. This is no ones fault, but to have only two aids doing the feeding is absurd, but like I said this is what goes on.
In my years of EMS, twenty plus, I have seen this time and time again. I have taken a patient into these facilities and give what they call a report, i.e.: what transpired during the transport there, what the hospital orders are, what meds they are currently taken, the patients vital signs, and so on.
Sometimes it's like talking to brick wall. You know these people are not listening, their mind is on what they were doing before we arrived. And again, I am not chastising any of the staff at these facilities.
This is just what goes on. While you are giving your report, they have four, maybe five other patients that they were dealing with prior to our arrival.
The problem is, no matter how good the facility is, they are in business to make money. And keeping the number of staff at the bare minimum is a business decision, and that is what these places are in, the business of making money.
I have nothing but the utmost respect for most of these facilities, but they are there to make money. One has to remember that. If your loved one is not receiving the care that they deserve, you need to document this and tell the Administrator.
All in all, these places do the very best they can. It's a matter of not having the resources in many cases, and those resources are staffing.
You take an aid, or a nurse for that matter, who has several patients to tend to day in and day out, who is overworked, and simply cannot give these people the individual care they need, this will have an effect on them.
No matter what your job is, if you are placed in an overwhelming situation day after day, you become callus. With no end in site, sooner or later you take it out on those around you and that many times this is the patients.
When you place someone, your role as a caregiver does not end. They need you as an advocate now more than ever. Chances are they can not communicate what is going on.
Every time you visit make it a point to raise there gown or pajamas and do a check of their entire body for any signs of bruising. Especially around their upper and arms, back, and even their legs.
If you see signs of bruising, take pictures. Then take your complaint to the Administrator in charge. Start at the top. Abuse does happen in these facilities.
I was an investigator for the State of Ohio for facilities. I was in charge of six counties here in Ohio. It was my job to make random visits to these places and see what is going on.
I also investigated all complaints, which ranged from sexual assaults, to theft of patients belongings, to abuse, to over medicating and on and on.
Things do happen in these facilities. Not all are blatant. Some are just a case of not enough staff. But the patient is the one who suffers. And it was my job to work for them.
Be their voice. Protect their dignity, and deal with whatever situations that came up. One time I had a facilities license revoked because for more than a year there was no training what so ever.
No one had up to date CPR training, or any training as to how to move patients from bed to chair, and at times there was not a nurse on the premises. By law in Ohio there must be at least one RN on the floor at any given time.
Every business has it's problems, and sometimes cuts corners. Nursing facilities are no different. You must be diligent as to what is taking place with your loved one.
I truly believe that no one goes out of their way to be abusive, or neglectful, but it does indeed happen. Make sure the facility you choose knows your loved one.
And make sure they are taken care of. Your job as a caregiver does not end the day you place them. It becomes even more important. 90% of facilities are run professionally.
And 90% of the employees are good hard working and dedicated to their job. They really have a connection with your loved one.
It's the 10% that you must be aware of. You are their advocate. They cannot tell you what is going on, and if they did, chances are most times you would think they are over reacting.
Don't make that mistake. Don't become complacent, and just take what is told to you to be the truth. Read their chart, talk to other family members who have loved ones there.
Your loved one deserves to be taken care of. Above all. It is their right and your responsibility to see this happen.


 


Friday, May 8, 2015

We need caregiver funding



Being a caregiver for a dementia patient is nothing like anything else you will ever be involved in.
There is never any time off. There is never any sense of normalcy. There is chaos at every turn. 
Most cases you are on your own. Day in and day out. I cannot tell you, or even begin to explain as a patient the amount of respect and love I have for those who have had to take this role on.
Even on your very best day, there are no breaks. As a patient I get that. This disease is a family affair for sure. 
Trouble is in most families the caregiver is on their own. Some family members may call or even stop by occasionally, give their two cents of what they know you are doing wrong and how they could do it better, but that is about it.
Rarely do you see this caregiving being a family thing. That is a shame, but that is indeed the reality of it.
Many times you will hear, "What can I do?", "If you need anything just let us know", or "We are there for you."
When in reality, their not. If these people knew what a caregiver goes through in just one day, they would be shocked. 
This is what I have preaching for years now. We need caregiver funding. We need our Gov't to step up and have funding for the caregivers to where they can actually quit their jobs and take care of their loved ones.
I am not talking a mere couple of hundred dollars a month. I am talking actual funding. Our Gov't could offer 80% of what the individual is making at their job, to care for their loved ones at home.
When I was in Washington DC a few years back, this is what I talked about. Caregiver funding. It would be much cheaper in the long run to subsidies monies then it is to have a patient placed.
It can easily run you $6,000 and more a month for placement, and if the patient has any property or money, this is all private pay till that money is gone or the property is sold.
The current estimates for caring for a dementia patient for our Gov't in the year 2050 is going to be 50 trillion dollars a year.
Money we don't have. But no one seems to care, no one seems to notice. Our Gov't cannot sustain such debt. We simply don't have it.
There are times when a patient has to be placed, but there are more times where the patient is placed because the caregiver simply cannot retire from their job to care for their loved one.
But, of course, no one in Washington cared about my idea. They would much rather sit behind their desks and shake their heads to imply they are listening.
They aren't. But one day, in the not to distant future they will listen. When the death rate for dementia patients reach an astronomical figure, they will pay attention then.
This disease is just starting. The blunt of it we haven't even seen yet. The baby boomers are just now coming of age to where dementia is prevalent.
Every 68 seconds someone is diagnosed with some form of dementia. I wonder how many die every second from this horrible disease?
Caregiver funding isn't going to cure anything. It will help the caregiver, that in turn helps the patient. This is not rocket science.
Why have they not taken this disease seriously? They have their walks for a cure, they have the fund raisers, they have their Dementia Awareness Month, and not one of these has beard any fruit.
We need action taken now. We need caregiver funding. This could easily be done by just holding back of a billion or two that we send to countries that are set out to destroy America.
As a patient, I am smart enough to know, the easier it is on a caregiver, the easier it will be for them to do what is needed to care for the patient.
Do we need cure? Of course. But why not tackle the problem of caregiver funding? Why is it the family must lose everything they have worked for when dementia has come into their lives?
One day this will change. Only because it will have to. The only way this disease will be cured is by Gov't spending. Trillions and trillions of dollars must be spent on research.
That isn't done. We rely on walks and pie in the sky talk about finding a cure. I wish they could come up with anything to make my life more tolerable.
But, our Gov't can right now help the caregiver. Which like I said, in turn would help the patient. The problem is no one cares. All of it is talk about what is going to happen. And nothing ever does happen.
I have the utmost respect for caregivers of dementia patients. Being a patient I know how stressful it is on caregivers.
We are not one bit closer to a cure then they were twenty years ago. Anyone who thinks this is progress is delusional. This is a joke. The one thing that can be done to help the caregiver is not even discussed.
I am very bitter about this. I get so tired of the talking heads doing nothing but giving speeches about what they are going to do, especially during election years, when in reality nothing ever gets done.
Nothing.



Tuesday, May 5, 2015

speak to your loved one about end-of-life wishes



Most things are difficult with dementia. I thought of starting a list of things that are difficult for me to do.
Then, I thought I would have to buy reams and reams of paper to keep up with the difficult things that we patients encounter, say in an hour or two, let alone daily.
One of the more difficult things I think a patient has to endure, can be found right here on Mp, sometimes. 
Someone inevitably posts about end of life issues. I understand why. And we need to talk about this. 
What I am about to say will be controversial. It is not intended to offend anyone. I am in the business of helping people, not offending anyone. 
But, sometimes I post about some things that is so controversial, some say, "Well, Rick Phelps said", or worse, "It's his way or the highway on Mp."
Both of these could not be further from the truth. We all have opinions, and all our opinions should be shared. It's how we do it, and what stance we take that sometimes offends others. 
We had a lady on Mp a few years ago that was offended that I took her to task when she posted about injecting her husband with water.
Seems as though she had read this somewhere, and swore up and down it worked. I of course told her we can't have post like this, and we simply won't allow talk of injecting anyone with anything.
She got mad, and left and the onslaught began. About how I would not allow something that did in fact slow the progression of her husband and on and on and on.
Now, to the point I want to make. Which has nothing to do with injecting anyone with anything. But, to me this topic is just as important that we talk about it in a responsible, respectful way.
End of life. Very controversial. How is it going to end? That's the question. And the reason there is even a question to this topic is that the family didn't deem it important enough to talk about when the patient was coherent enough to discuss their wishes.
Nothing irritates me more than hearing about how a family has decided how their loved one will leave this world. This should have been taking care of years ago.
Dementia is not an overnight killer. When I was diagnosed, the very next week we went to our attorney and had things changed.
Wills, Power of Attorney, DNR orders, we put everything in Phyllis Junes name and she has Power of Attorney over my medical and our financial businesses.
We did this because it was the right thing to do. You cannot believe the amount of stress that will cause a family if not done. And what we done, was my wishes.
Not what Phyllis June wants, not what our daughter wants, but what I, the person with this disease wants. It is so important that the patient has some sort of control over what is coming, hence, end of life issues.
I, for example have a Do Not Resuscitate orders. Now that doesn't mean if I am in a massive car accident, I don't want everything possible done to save my life.
What it means if and when I am at a state to where this disease has taken its toll and I have no way or recovering from it's progression, then Phyllis June and THREE doctors can decide it's time to call it day.
There is not going to be any talk of "Well, should we feed him? He can't feed himself, so we are just keeping him alive by feeding him."
Or, "Lets just deprive him of food and water. They say it's a natural way of dying."
Here's my thing, you ever watch Survivor. A hit series on CBS for years now. A bunch of men and women are put on an island and have to fend for themselves, to Out-wit, Out-last and Out-play the other contestants.
Ever season, ever episode one thing is common. Hunger. Lack of food and water. They will tell you that watching the show is nothing like being on the show.
Hunger to a whole new level. They actually become despondent at times because of the lack of food. We simply cannot survive without food and especially water.
Our body is made up of 90% water. You take fluids out of the equation and within 48 hours, things will start to shut down. Things that if not for the lack of water, were not even an issue.
Your organs will begin to deteriorate. One right after another, starting with your kidneys. Then on to other vital organs. All of this because you were taken off of the simplest of things, water.
That will not happen to m
Not till death ensues, but just long enough to prove to us all that depriving someone from food and water is a natural thing.
Let me be clear. There is nothing natural about taking food and water from someone who is already dying a horrible death. The people that say there is, well, that is at best their opinion.
What I am telling you is fact. No matter what your health is right now, you quit eating and drinking water and you will be dead in a matter of days.
And trust me when I say, it will not be natural. I think the very thought of such a thing being natural is absurd.
And where do you draw the line at to no fluids or food? The person can no longer feed themselves? My cousin has been unable to feed herself for two months now, should we have taken food and water away from her?
If not, then who, and when? Anyone can have a massive stroke that leads them to not being able to feed themselves, anyone. Are they then deprived of food and water? What I am getting at, is who has the authority to make such decisions, and when you figure out who does, why does that person have that authority?
Now, all this being said, there will be those who disagree whole heartedly. And that is their right. But, why is it always someone else they are talking about depriving of food and water, and not themselves?
Why is it always some patient who is unresponsive, and they are sure this is what they would want? Why is it always we always talk about what the person would want, when clearly no one asked while they were coherent?
Please, please, please...if you think you must do this, at least have the patients approval. Anything less and and in my humble opinion, you are starving that person to death.
I pains me to read some articles where the author thinks that this is not only appropriate, but as they always put it, it's natural.
Yea, well...it ain't. Nothing about depriving someone of food and water is natural. Nothing.
For God's sake talk to the patient. And if you haven't and it's past that point where they can communicate, don't starve them to death.
These as always are my thoughts. I am not a professional as some would claim on these issues. But I am a patient, one who deserves and has the right to be taken care of till the bitter end.
To me sometimes these barbaric things are done to let the families off the hook. I hate to think that, but why on earth would doing something like this even enter into the conversation?
"Let's just deprive Dad of food and water. I hear it's the natural way to go..."
In most cases doing such a thing in my opinion should be deemed criminal, certainly not natural...