Monday, June 29, 2015

I Think I Have Alzheimer's, Now What Do I Do?

"I think I have Alzheimers"...
"What do I do? Where do I go? What questions do I ask? Am I dying?"
There are dozens, even hundreds of questions you will have when you first get an inclination that you may have dementia.
For me, there was no doubt. I knew there was something drastically wrong five years before I was officially diagnosed.
How did I know? Because this disease is not like you can't find your car keys, or you misplaced you purse, or perhaps you can't remember what time a meeting is.
This disease is like having your car keys in your hand, and not know what they are for. This is but an example, but it's almost impossible to try to explain what it is like to have dementia, even in the beginning.
I can tell you that I knew. We both knew. Phyllis June and I both. We thought perhaps I had a tumor or a blood clot on my brain. Perhaps some type of cancer.
I have to admit, neither of us entertained the idea of dementia. I was officially diagnosed with Early On-Set Alzheimers in June of 2010.
So I am into my fifth year of this disease, but like many I battled with memory loss for over five years before I was diagnosed.
What do you do? Before your diagnosis, you need to get long term health care insurance. You can get this very reasonably and can be canceled if you do not have dementia.
You will then need to demand your local doctor do a mini-mental test. This test is very easy. But it is just a guideline. This alone will not conclude you have dementia.
There are a number of tests you will go through. Blood work, MIR, they will check your B-12, and many other things. Then after these initial tests you will be referred to a Neurologists.
They too will do a battery of tests. If you are diagnosed with dementia, the first thing you do is nothing. Give it a week or so to sink in. Stay away from your computer. You can learn a lot on the internet, but you don't need to be bombarded with myths about this disease.
Right now, being here is the very best thing you can do. What you read here is all fact. There are no innuendoes, no myths about dementia allowed here.
After you have given yourself to time for this to sink in. Then you need to contact your lawyer if you have one. You will want to or should want to change some things.
Like getting everything and anything out of your name. Then contact the Alzheimer Association. They can give you some advice that will be helpful.
But, the main thing is try to remain calm. As calm as possible.
This goes for the patient and their family. One of the worst things you can do is to be stressed about anything.
The diagnosis alone is very stressful but being around people who blow this out of proportion is not good either. Granted, being diagnosed, telling you have a terminal disease to which there is no cure and nothing to slow the progress...that alone is enough to drive anyone crazy.
But this isn't going to happen over night. The symptoms you had the day you were checked, are the symptoms you will have for quite some time.
This disease doesn't spread or progress simply because of a diagnosis. There are a handful of medications you will likely be introduced to. Some of them may make the symptoms less severe.
This disease will progress no matter what you do. That is a fact. But to most it is a slow progression. You may go years and still be able to function at the same level you can right now.
But, everyone is different. I have progressed a lot in the last three years. The last year especially. There is so much more to this disease then memory loss.
It effects everything you do, all the time. No break, no time off, no getting away from it. That is the thing that is most difficult for me.
I deal with this every second of every hour of ever day. Twenty four hours a day, seven days a week. And you will too.
If you are a caregiver, take one day at a time. Don't worry about what things may bring in a month, or six months or even an year.
You can't change any of it. And there is no way you can predict or anyone else can predict what may happen with this disease from day to day let alone a year from now.
Today may very well be the very best day of your loved ones life. Ever. You simply don't know.
Are they safe?
Are they Pain Free?
Are they Content?
If you can answer yes to these three questions, you are winning the war. There will be many battles you will lose. There will be days when you think you cannot put one foot in front of the other.
I have these days, more than not. But I keep on trying. I keep on going forward. Why? Because there is nothing else I can do.
The most important thing you can do is to make peace with all of this. Understand what is happening. That doesn't mean to give up, it just means you understand what is happening, what will happen, and yes this is terminal.
But then, we are all terminal. Every since the moment we took our first breath as a baby, we are moving toward the day that we die.
Being here is the very best thing I can tell you you can be be doing for yourself or your loved one. We don't sugar coat anything here. What you read here is indeed the truth.
Perhaps not what some want to hear, but that is what we do. We deal in reality here. Not the what if's or the could be's. We don't waste time talking about cures here.
Because that is just what it is. We could debate all day long about cures. What does what, and what doesn't work. And all that would be is a day wasted.
We let others dwell on cures and false hope. Here we believe in Hope, but the kind of Hope you can cling to, not something that you hear you can take and all will be well.
There is nothing about this that is is well, there is nothing about this that will be okay. To date, there in no known cure and there most likely won't be in our lifetime.
That again is a fact. If they found a cure today it would be decades before it would be available to us common folk. And then most insurance companies would not cover it.
A cure will come one day. But what we do here is important today. Not what may happen in a year, or two, or ten. We deal in today.
Getting our members through today, and then we get up and do it all over again tomorrow. While We Still Can...

Thursday, June 25, 2015

Bad Days


Just called the wife, asked what pill it is I take when I am starting to have a rough time. 
With this disease, I can tell, least now anyways, when the day isn't going to be good. I knew it when my feet hit the floor this morning. 
I try to ride it out, doesn't work. Never has. So, with the direction of my local doctor here I take an additional anxiety pill for times like this. 
Having been asked so many times what brings on times like this. That of course is the million dollar question. It's a beautiful day out, I had plans to be outside all day.
But now, that isn't going to happen. I like to think I am getting used to this by now, but I'm not. You can't.
I think sometimes my brain is just on overload. The constant barrage of trying to remember everything, takes a toll on you.
I am worse now, then I was a couple of hours ago. It's like a progression. I can feel this coming on, so I have to do something to try to help get through it.
Calling my wife and making sure I will take the proper medication is the first step. Putting it off as long as I can is the next step. 
This feeling will last. Could be a few hours, could be all day, could be several days. There is no telling, and there is no "fix". The meds I take may ease the symptoms that I have, but there is nothing that will keep me from having days like this.
Hopefully it only lasts a few hours. That is what you do. Hope that this feeling doesn't last. 
There will be a time in the not so distant future that I will be struggling like this more often. This feeling will one day be constant. I can't imagine, but it is coming. 
I tell everyone all the time, take this day as if it was the very best day you will ever have. One day it will be. Worrying about what is coming is useless. 
Dealing with what is going on today is important. Get through today. Then I can worry about getting through tomorrow. While I Still Can...

Friday, June 19, 2015

Surgery On A Dementia Patient?

Memory loss from a hospital stay. What articles like this are referring to is the patient has more cognitive issues when they came out of the hospital, then what they had when they went in.
This could very well be, in other words does memory loss increase by a hospital stay in some cases? Of course. But, and there is always a but. But, if you have a loved one who is suffering from dementia, what type of surgery they have should be weighed in here. 
Meaning is the surgery something that needs to be done? Is it life altering if not done? Does the patient risk death if they don't have some particular surgery? 
Or are we talking about a knee replacement, or a heart cathe? Something that really doesn't need to be done? At 86 years old, a knee replacement is not at the top of the list of things needing to be done. Least shouldn't be. 
Quality of life. I am at a place in my life that there is not going to be any surgery on me unless it is a life altering thing.
And most times, I would guess that when a person has to undergo surgery it is indeed a life altering thing.
You will hear that less sedation can keep patients awake longer. Which there is no doubt in that statement. What you don't hear is that in some cases the very drug your loved one is given to "put them to sleep" is indeed a memory erasing drug. And that the amount is the same, they don't give you more Versed for example to make you sleep longer.
It's what Versed is designed to do. Versed is just one of the drugs I am referring to. It is given in EMS all the time. With the right circumstances present.
Versed is designed to erase short term memory. This is what this drug does. And there is only a certain amount of Versed you can give, regardless of the situation. You give this so that the patient will have no recollection of what the traumatic incident they just endured.
If for instance they wake up and and their left arm has been amputated, they of course will realize this, but they will not have any memory as to the events that led up to and following the event. They may tell you they do, but they don't.
Why? Because of the drugs they were given. Versed is used in every EMS system nationwide. It is given not only in the field, but it is also given in a hospital setting when you arrive at the hospital.
The reason I am saying this is that a person can be given a drug or medication that indeed alters their cognitive ability and not have had surgery at all.
This happens much more than someone who is scheduled for surgery. This is why I have stated so many times when your loved one is in situation where EMS has to called, it is imperative that the paramedics who arrive know your loved one has some sort of dementia.
You don't have to go into great detail of what kind or what type. Dementia is dementia when it comes to transporting someone to the hospital in an ambulance. What type of medication your loved one is given in an emergency situation always depends on their past or present medical history.
So, surgery can effect dementia on account of the medication used to put your loved on out. But so can a trip to the ER from EMS. It is your job as a caregiver to inform any medial personal who will be caring for your loved to be informed of their situation.
That will help. But if it is a life saving procedure that has to be done, then your loved one being effected more so by some drug given to put them out, is not even an option you would entertain.
Life supersedes death in every instance. Unless of course there is a DNR, then that is whole other topic we can take on one day...

Wednesday, June 17, 2015

 ~ I knew what I needed, and what others needed too...
When I started Mp, it was for me, not anyone else. Why? Because as a patient I knew that what I was seeking could not be found.
Many times of other discussion boards you would get an answer in an hour, a couple of hours, maybe a day later.
This wasn't going to cut it for me. The mere fact that dementia patients have short term memory loss should have told the facilitators of some of these sites, that what they were doing wasn't working.
It didn't. But even worse than that, there was advice being dolled out hand over fist by people who weren't even close to being qualified to give such information.
I was in a group to where no one used their name. Only nicknames. How much reverence can you put into someone who's going by the name of Black-Bart, or Lovely Lady, and on and on.
I knew what I needed, and these sites were not doing me any favors, so how I wondered could anyone be getting any support, the right support?
In the world of business you can be successful. You don't have to have a PhD, you don't have to have hundreds of thousands of dollars to create a business.
What you need is a service. A service that others need. I have in my lifetime had two very successful businesses. And not because I am a business savvy person.
But I realized a need, a service if you will. And I knew if I could provide that service, that people would use the service I was providing.
So, on Thanksgiving Day 2010, at about 4:00am, Memory People was born. I took a very simple concept, a service if you will and breathed life into it.
I remember in the beginning I contacted three very important people. Our own Cheryl A. StevensonKathy Bostwick, and Donnamarie Baker, these three people I knew would be instrumental in the beginning of Mp.
They were on a couple of the sites I had visited. I had talked to all three of them, one a time, and I knew they too were seeking support. What they were getting of course from some of these sites was not what they had in mind.
I knew that. All I had to do was convince them. That took all of about three minutes. I asked all three if they would be interested in joining this new group I had found? A group where something is happening that you will not find anywhere else?
A group that actually talks to one another. People there actually know each others name. They are bearing their hearts and souls to one another, and it is helping.
Such an easy concept, they thought. They all agreed to join, but was wondering how many others were in this group? I told them, that them three and me made four.
Still, Mp was bon that day. And we worked hard night and day to bring the Awareness and Support to others we had found, simply by doing something no one had ever done before.
We were taking to one another. Sharing our experiences. Sharing our stories, are victories and our defeats. But we were walking with this disease together.
We didn't separate caregivers from patients, or patients from family members. I was told very early on by someone who is self proclaiming that he is an expert in the field of dementia.
He told me that this concept, the concept of having everyone in the same group would never work. You have to keep the groups separate he said.
I cordially disagreed, and I began to surround myself by people who were positive about this disease. Well, as positive as one can be. People who would not sugar coat this, because that is what some want to hear.
I told everyone who joined Mp, if you are looking for a group that sits around and sings Kumbya to one another, or a group that tells others anything they want to hear, then Mp is not for you.
And I knew that. No one group is for everyone. We had our growing pains, that's for sure. But one woman emerged from all the rest. One I had my eye on for some time.
She was getting what we were doing here, I knew it from the posts she was making and from her devout belief that we were indeed making a difference.
That woman was Leeanne Chames. I cannot tell begin to tell you what she does for this group. I cannot begin to tell you what I alone put her through.
Some of the idea's I have and she and others on her team are asked to bring to life. Our Memory People Support Groups™ Was just one of them ideas that she and others brought to life.
Us becoming a non-profit again, Leeanne led the charge. We did this, and much, much more that goes on behind the scenes that make this Mp thing work.
Most think when they wake up and see my "Mornin', Mp..." that it just happens. Nothing around here just happens.
Leeanne Chames heads up our Admin team, the very best in the business. And they too are a mix of patients and caregivers.
She oversees every aspect of Mp. I still have final say on what happens around here. But in the future, I know Mp will be in safe hands.
I know that the Support and Awareness will always go hand in hand. I have difficulty doing what I once could. That is a given. But if you surround yourself with good people, people you would put your life in their hands, then you can indeed know things will continue.
This is not about Rick Phelps. It never was, it never will be. This is about you, our members who come here day after day, hour after hour and Support one another.
Most likely many of us will never meet. But in the end, we have done in five short years what has never been done before. WE are bringing Awareness and Support to one another.
Unlike any other site, and better than any other site on the internet. Not because of me, but because of you. And I thank every one of you for giving what you give of yourself, day in and day out for complete strangers.
Strangers? Hardly. Family. That's what we have here. And together we will walk this journey, as it should be. As it always will be...
National Awareness Day, or Month? For us, that's Tuesdays, or Thursdays, or Wednesday about 3:00am. There is no break, there is no special day we do what we do.
That is what most people don't get. There are no special days for Awareness or Support. If there is in your world, you need to make an appearance in my world.

Intelligence After Dementia ?

Intelligence and Dementia. This has been brought up on many occasions. I will use myself as many have questions about why I can some of the things I can do, while their loved one cannot do anything they used to do.
This whole topic begins with intelligence. Intelligence or lack of intelligence of the disease, not the person. Meaning you have to understand dementia before you can understand what and why this disease is doing to your loved one.
Many times believe it or not I have been accused of not writing the posts that you see. My wife writes them, or many have even claimed that Leeanne Chames writes them.
If one would stop and think, this on it's face is absurd. What happens is, because I can still string a couple of sentences together, I can still drive, or I can still enjoy some things I always did, I must not have dementia.
To put this into perspective, people who say this are just lashing out. It's normal, I suppose. But it is also demeaning to all patients.
First of all, who you were before this disease came into you life has a lot to dictate on who you are and what you can and can't do after a diagnosis.
I never had one thing given to me my entire adult life. Everything I have, everything my wife and I have, is because we both worked two jobs for nearly twenty five years.
Phyllis June still to this day works two jobs. I never attended college. I knew when I graduated from high school, I was in charge of my destiny. Not some diploma.
For that very reason, I worked harder than most. I have always applied myself when it came to things that interest me. And the career path I chose I knew if I worked hard and applied myself I would be successful.
I have successfully owned and operated two businesses. That neither of which came from a diploma. They came from hard work and determination. Not knowing the meaning of can't.
I think being there when the whole computer thing came to be has helped me immensely. I was always interested in computers. Even wrote some programs back in the day.
Choosing the career path I did, I worked with the public. You get to know people when you work for them. And being a public servant on top of the businesses I started up and ran has been an honor and something I will always be proud of.
I also toward the end of my career was an investigator for the State of Ohio who went into nursing facilities and investigated everything from fraud to sexual abuse, to theft of drugs, to abuse of patients and on and on.
I got this position, even though of dozens of others who applied all had college degrees. My work ethic and determination helped me land this job.
I had to be proficient is writing. The reports I had to do were seen by very important people, attorneys, judges, and a whole host of others in the legal profession.
When I wrote my reports, I learned very on that I had to tell a story. A story that the person reading it would understand for they were not there. I had to paint a picture, and be punctual, accurate and precise.
Every report I ever did had someones life in one way or the other dependent on it. Could have meant someone would be spending the remainder of their natural life behind bars, could have meant that someone would be able to continue an education they had so very much worked for but for whatever reason had made one or more mistakes.
Every report I did had consequences. Every report meant that someones life was about to change. I could not just throw my reports together.
I was also in the medical field for a number of years working EMS. This is another profession where you rarely get second chances to make things right.
The split second decisions you make, do in fact make a difference between life and death. Being a public servant is not for everyone. And doing these types of jobs you just don't skate by.
I worked hard, long hours. But I was very successful. And that successes, that hard work, afforded me the intelligence that I have to this day.
Granted, I have lost some intelligence. And I will slowly but surely lose more. But the fact of the matter is, just because you or someone you know has been diagnosed with some sort of dementia, they do not automatically become oblivious of things around them.
I know I have lost many things. The ability to read more than two paragraphs, I know longer have the concept of time, and I sometimes have a great deal of difficulty recognizing things and of course my lose of memory.
But all in all, I still have some intelligence. But, and this is not in any way meant to be demeaning to anyone, but...if you didn't have a much intelligence before this disease came into your life, you are certainly not going to have much after you diagnosis.
Just because I can do some things that others cannot, certainly doesn't mean I am not suffering from the horrible disease.
"How can Rick Phelps claim to have dementia and be so intelligent?" A lot of people in my life would challenge that question. Our daughter, Tia Nicole Bookless for example. To her, I am the most courageous person she has ever known.
Her words not mine. My wife will tell you that if I put my mind to it, whatever it is, it will get done. But they will both tell you in an instant that over the years I have made some really, really, bad decisions.
Why? Because I am human. Doesn't make me any less intelligent, this just makes me human.
Leeanne will tell you, there are days when I cannot grasp what is going on, days when we go over Mp business and I cannot for the life of remember what we are trying to do. Those days do not dictate my intelligence, just as any bad day would any dementia patient.
When you come across an individual who seems to be somewhat intelligent, who has dementia, remember it could very well be that the person has worked very hard to be intelligent their whole life.
Intelligence is earned, not given. We sometimes forget that. And by a diagnosis, you nor anyone else will become instantly less intelligent. Unless of course you weren't to bright to begin with.

Friday, June 12, 2015

Dementia, probably of the Alzheimer's type

"I have dementia. Probably of the Alzheimer type." This is the tag line that most Neurologists are using now. Have been for some time. 
They are in fact giving you a diagnosis, without pinpointing to exactly what it is. Reason? Because as we know, the only real way to tell if anyone does indeed have some form of dementia is an autopsy of the brain. 
And to date, they haven't figured out how to do that and keep you alive. So, you will hear, "You have dementia, probably of the Alzheimer type".
I have never heard someone say "You have dementia, probably of the Vascular type, or probably of the Lewy Body type. They always say, "Probably of the Alzheimer type."
This has become so well known, that some very prominent people I know who have been diagnosed introduce themselves as having dementia, probably of the Alzheimer type.
To me, the real thing is and always has been is that I have a brain disease. It may be one type, say EOAD, or it may be vascular, or whatever. But in the end, almost all types of dementia do the very same thing. 
They attack certain parts of the brain and destroy it systematically. There is no slowing the progression, there is no cure. 
Strange. To have dementia, probably of the Alzheimer type. To me anyways. But, that's what is happening as of now. Something that is been going on that also doesn't make much sense to me being a patient is that I was diagnosed with Early On-Set Alzheimers. 
Now, it depends on who you listen to, but in a nut shell if you are less than sixty five years old you have Early On-Set Alzheimers. If you are over 65 years old, the same diagnosis, but it is now called Alzheimers. Not Early On-Set. 
All on account of you age. Odd? I would say so. I am not making this up. This is indeed what you will find in many publications written about Alzheimers. I for example was diagnosed with EOAD on account of my age. 
They, whoever "they" also claim that EOAD is a much faster progressing type of dementia, then say Alzheimers. So they say. Is it? I say "Who knows?"
Another thing that really bothers me is when someone talks as if there is a difference between dementia and Alzheimers. There isn't.
To be clear, dementia is the disease. It's like the "umbrella". And all the other forms of dementia are listed under that "umbrella".
Like, Vascular Dementia, or Lewy Body, or Frontal Lobe, or in fact Alzheimers. Alzheimers is a from of dementia, the most common of course but still a type of dementia. So if you are diagnosed with Alzheimers, you do indeed have dementia.
And last but not least is the pronunciation of the disease itself. Alzheimers.
If you look at the word, you will not see in it anywhere a "T". It's a "H", not a "T".
There is no "T" in Alzheimers. So please, when you hear someone pronounce Alzheimers as "Alztimers", please tactfully correct them.
When you have this disease, or even if you are a caregiver the least you can do is pronounce the word correctly. It isn't a huge thing, but I don't know where and when the word started to be pronounced with a "T" in it.
It hasn't a "T". It's the little things that make me crazy sometimes. This is not something that is earth shattering and in the grand scheme of things none of it really matters.
It just bothers me. And the less things that bother me, the better. How about you???

Thursday, June 11, 2015

A Caregiver's Role With Medications

From Rick Phelps ~ A Caregivers' Role in Medications
If your loved one is not tolerating some medications, be it antipsychotic, anxiety meds, depression medication, or whatever, it is indeed the right thing to do as to get them on something else.
But no one, in my humble opinion should just stop giving their loved one the prescribed medication they are taking before contacting and seeing the doctor who prescribed them.
This to me is a no brainer. I know there are instances where people do this. Just stop their loved ones meds for one reason or another.
I can't for the life of me understand why anyone would do this without picking up a phone at least to inform the patients doctor that they are doing this.
If the side effects or whatever from some mediations are that severe, perhaps they need to be taken to the ER by car or by squad. Then talk to the doctor about the symptoms that they are experiencing.
This taking a patient off of their meds as I have said a thousand times by family members or caregivers is just not right.
I have had one experience with this personally and it happened because of my Neurologists. He suggested I quit taking a narcotic I was on. He asked me if I thought that was a good idea.
I of course said, "You are the doctor, I will do what you think is best" The reason he did this is simple. The drug I was taking was a narcotic, and doctors always worry about addiction.
So, in the next few days and weeks he began a regiment to wean me off of the drug. That was a huge mistake.
I had severe reactions to not taking the drug. But, even then, I just did not start it back up again the way I was taking it before the weaning started.
Why? Because I am no doctor. My wife called my local doctor here, explained what was happening, he immediately put me back on them at the same dose I was taking.
Moral of the story....the Neuro I was seeing was trying to do what he thought would be best for me. It wasn't. My local doctor stepped in and made adjustments immediately.
I didn't just start taking the drug on regular basis like I was without consulting a doctor. Which every clear thinking person should do.
Not only did my local doctor here get me back on the drug, he also in the mean time had to increase some others I was on that would take effect right away.
The narcotic would take weeks to get back into my system, and what I was experiencing I could not have gone for days, let alone weeks.
So, mistakes were made? Perhaps. But this is what happens with medications. At any given time you can have an adverse reaction to any medication you are taking.
Why? There are a number of reasons. But the bottom line is, you the family member, or caregiver should not be stopping, or increasing, or decreasing, or changing your loved ones medications.
That is not how it works. It just isn't. And as I have stated time and time again, should you do this, cease someones meds on your own for whatever reason and they would die, don't think for a moment that their isn't going to be an investigation.
There will be. And when it comes to the place in that investigation to where you have to say, "Well, I did stop their meds. or I changed the dose because I didn't think what they were taking was working".
If any of this comes out, and they can tie what you did by changing or stopping a persons meds, don't think for a moment you won't be serious trouble.
It's just common sense. You the lay person are simply not qualified to change someone mediations. Period.
And if your loved one is in a facility and you think they are being over medicated, under medicated, or whatever, you do have a moral obligation to step in and do something.
There are steps one can take. First and foremost document. Write everything down that has happened. Get copies of the drugs that were given, when they were given, what dosage, if the dosage was changed and why.
Then take this complaint to the nursing administrator. Also get an ombudsman involved. If this is indeed happening, there will be an investigation.
I worked for the State of Ohio as investigator for nursing facilities. It was my job to investigate issues just like this. Along with many other issues such as abuse, both physical and sexual, theft of personal items, made sure every employee was keeping up with their training on a regular basis, and on and on.
If someone wages a complaint about the mediations that their loved one is given, it isn't just swept under the rug. If it is, then you are not talking to the right people.
There are people that their only job is to protect the patients in these facilities. Even the smallest complaints are investigated. These facilities are held to the highest standard.
Some don't do what they should, or course. But that is why there is ombudsman and investigators that do and will look into every complaint that is filed against a facility.
Never one time in the years that I was an investigator did I have one case where the family member was self medicating their loved one. I know this happens, and if I had gotten that complaint, I would have investigated it, did my report, sent it to the state, but I was compelled by law to notify the local law enforcement that a lay person was indeed changing their loved ones medication without the consent of a their doctor, or any doctor for that matter.
This can be criminal like I said before. For those who don't believe that, keep doing what you are doing. It won't end well for the patient, or you.
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Tuesday, June 9, 2015

Failure To Thrive

Failure to thrive. Here is the medical mumbo jumbo for failure to thrive.
"In elderly patients, failure to thrive describes a state of decline that is multifactorial and may be caused by chronic concurrent diseases and functional impairments. Manifestations of this condition include weight loss, decreased appetite, poor nutrition, and inactivity. Four syndromes are prevalent and predictive of adverse outcomes in patients with failure to thrive: impaired physical function, malnutrition, depression, and cognitive impairment. Initial assessments should include information on physical and psychologic health, functional ability, socioenvironmental factors, and nutrition. Laboratory and radiologic evaluations initially are limited to a complete blood count, chemistry panel, thyroid-stimulating hormone level, urinalysis, and other studies that are appropriate for an individual patient. A medication review should ensure that side effects or drug interactions are not a contributing factor to failure to thrive. The impact of existing chronic diseases should be assessed. Interventions should be directed toward easily treatable causes of failure to thrive, with the goal of maintaining or improving overall functional status. Physicians should recognize the diagnosis of failure to thrive as a key decision point in the care of an elderly person. The diagnosis should prompt discussion of end-of-life care options to prevent needless interventions that may prolong suffering."
Blah, blah, blah.
Here is my take on failure to thrive. It is mostly common in infants. But is prevelant in the elderly. Failure to thrive can be brought on by parents of infants by not feeding them, not nurturing them, not loving them.
Failure to thrive is associated in elderly people who have cognitive disabilities, or some other major disease such as cancer, COPD, whatever. 
However, where this becomes really messed up is when failure to thrive is caused by caregivers, family members, making decisions for patients who cannot make decisions for themselves.
Not taking an elderly person anywhere, can be failure to thrive. When you are their one and only way of transportation, and refuse to take them anywhere, they are and will experience failure to thrive. 
Just by being placed in a state of alone. Not being around any other people, activities, or just being outside. 
Failure to thrive can also be found when a caregiver or family member decides for whatever reason that the medication that their loved one is taking, is not helping and they decide to stop them from taking it. 
By just not giving it to them, they are indeed causing failure to thrive. And in some cases, this can be criminal. When a doctor prescribes medications for a patient, that patient in most cases takes what is prescribed for the amount of time it is prescribed for. 
In the case of diabetes, or blood pressure medication, it could be a life long thing. Many meds are like this. 
Psychotropic drugs fall into this category. Usually drugs used for these kinds of issues are taken for life. 
This is very true with dementia. Your loved one is not going to take a few rounds of Aricept and everything is going to be fine. They just aren't. Just like they are not going to be prescribed a medication for anxiety or stress and then be "fixed" and taken off of these medications. 
The issues of stress, anxiety, depression, etc, are all going to be there for as long as the disease is. Which of course is until the day they die. 
So when a family member decides that the drugs their loved one is taking is not working, and just quits giving it to them, they are indeed causing a failure to thrive issue. 
And knowingly doing this can be criminal. This could be construed as manslaughter if someone dies in your care, just because you decided not to give them the proper medications. 
This is why we have documents like Power of Attorney over ones medical decisions, and financial for that matter. It would be just as illegal to deprive someone of their mediations as it would be if you went out and and spent their life savings on a vacation home for yourself. 
You simply cannot make the decision to take someone off of their medication because you feel it isn't doing whatever it is you think it should. 
First off very few of us are doctors. And even if you are, taking someone off a prescribed medication should always be done through consultation with the doctor who prescribed it. 
The amount, the route, the number of times this medication is taken, why the medication was prescribed to begin with, what other mediations they are given in tandem with and for how long the patient has been taking them, are all issues that you cannot possibly be privy to.
When I read on Mp, or anywhere for that matter about a caregiver/family member taking their loved one off any medications, I shudder. It is beyond me why anyone would do this without doctors direction.
Think about what you are doing when you just decide because you can to take your loved one off any medication because you feel they shouldn't be taking it.
I feel I shouldn't have to take the number of pills I do a day myself. But, I am not in the position to make these kind of decisions and I do what my doctors tell me I should do.
My thinking is if you really feel your loved one should not be taking something they are, after you have gone to medical school, and done your internship, and have a MD after you name, then and only then can these types of decisions be made by you.
Certainly not on a whim. A hunch some medication isn't working simply because it doesn't hold up to your standards on what the medication should be doing isn't going to stand up in any court of law.
We see this Mp a lot. Family members playing doctor with their loved ones lives. And I for one think it is dangerous and like I said in many instances can be considered criminal.
Think about your decisions. That is what we all need to do. Because the patient cannot decide for themselves does not give you the power to play God. Who are you to decide that your loved one needs some medications yet not others?
This is very dangerous. Very...

Loneliness, It's Real

The feeling of loneliness. Is it real? Loneliness is one of the hardest symptoms to deal with, for those of us who struggle with dementia. In a crowed room, the feeling of loneliness can be there.
The thing is for me is not knowing what is going on. Who are these people? What am I doing here? 
It is very easy to feel loneliness and yet be around people, loved ones, total strangers. It is something that the disease has done to a portion of the brain that triggers this feeling, that I am sure of.
And like many symptoms, you cannot "fix" it. What you can do is do everything you can to try to elevate these feelings.
What is that? That is the million dollar question. The feeling of loneliness is like a euphoric feeling that comes upon you. It's there, no matter what anyone tries to do to help you.
It's just like the feeling of fear, which I think goes right along with the loneliness feeling. You feel alone, which triggers fear, which triggers stress....and on and on and on.
Try to imagine how you felt when a loved one left you for a very long time. Say they went into the service, had to move out of state, or where there visiting and had to leave.
That feeling of loneliness is what a patient feels. Except no one has left, no one has moved. Like I said, loneliness can come upon us in room full of family, or sitting in the front room with your spouse.
This is one of the symptoms that I take medication for. Like I have said a thousand times, I take a whole array of medications daily, not one of them are for the disease itself.
All my medications are for the symptoms of the disease. To try to lesson the symptoms. Some work, some times. Most don't, most times.
I try to think, as bad as it is...how bad it could be if I were not taking the medications I do to try to lesson these symptoms.
When you loved one is experiencing things like fear, loneliness, anxiety, or stress, this is the time they need to see their doctor. Again, no doctor can "fix" this, no one can.
But chances are they can prescribe something, or perhaps increase one of the medications your loved one is taking to try to lesson these symptoms.
Loneliness is real. Just as real as the person your loved one sees and talks to when no one is around, or the people who are trying to kill them.
Hallucinations are real to patients. The imaginary people are real. And loneliness and fear are real.
How do I know this? Because I am a patient who deals with loneliness. Not someone who can tell you about it by something they learned in a book or by working with patients.
I deal with loneliness. It's real.
Real as rain...

Monday, June 1, 2015

Dementia, Many Questions, Still No Answers

If your new here, or new to this dementia the one thing you want is answers. 
There are many one word questions about dementia, "Why?" Why me? Why our family?
Another one is "What?" What can be done? What should I do? What will happen?
And yet another, "When?" When will a cure come? When will this get better? When can I get some rest?
And then there's "How?" How did this happen me? How do I cope? How on earth can I take another day of this?
These are but a few questions you have if you are new to this disease. The thing is, even those of us who have been dealing with dementia for years have the same questions. 
There are no real answers. Not yet. Someday, but no answers right now. There are some suggestions that can be made. When dementia comes into ones life, everything changes. Everything. 
I miss who I was. I miss the things I once could do. But I learned to let go of those things. Concentrate on the things I can still do. Instead of dwelling on the things I have lost the ability to do.
Saturday, I had the honor of playing at my cousins funeral. A tune that I had played thousands of times over the years. It was only three chords, but to me it may has well have been ten chords.
I did get through it, but the stress it put on me for days was very difficult. Losing things is difficult. But dwelling on what you can no longer do is even worse. 
When asked "How are you?" I always try to reply, "I'm thankful". And thankful I am. For what I still have.
When first being diagnosed, you will find little to be thankful for. And the longer this disease progresses, it becomes more difficult to be thankful as time goes on.
The most important thing I can tell you as a patient is to do if you are newly diagnosed is to do the things that are important to you. And do them as often as you can.
Spend time with your loved ones. Cherish what others take for granted. For one day, the simplest of things will be impossible.
Even though being diagnosed is indeed a death sentence, it isn't a death sentence that is carried out over night. Most have years left. Some very good years.
Toward the end stage, there are but three things to remember.
Are they safe? Are they content? Are they pain free? If you can answer yes to these three simple questions to the best of your ability, you are doing the very best you can do for your loved one.
Learn as much as you can about dementia. Knowledge is power. I try to share my journey with as many as I can. To prepare them for something that is impossible to prepare for.
There are many questions when first diagnosed. But there are just as many, when your loved one draws their final breath. Be there with them. Hold their hand. Talk to them.
Tell them they will never be alone. Being alone is one of a patients greatest fears. We all fear being alone. But couple that with dementia and you are alone even in a room full of family.
I wish there were answers to all our questions. There are suggestions and you will not find a better source than right here on Memory People™.
A place designed for the patient, the family, the caregiver, and the advocate. A place to come home to. A place where others know exactly what you are going through.
A place where we offer Support and bring Awareness. We leave the curing to others. We want to help you get through today. And then do it all over again, tomorrow...