Thursday, February 26, 2015

Dementia, Denial, Diagnosis

You've seen all the signs. The memory loss, the difficulty they have with conversations. The repeating of things day in and day out. The struggles they have finding the words they want to say.
You know, and everyone around them knows there's a problem. And it's probably dementia. Now, what to do?
First things first you have to get them to the doctor. They need to be diagnosed. Or do they?
Many times one of the first things you see or hear will be denial. I have said over and over denial should be a symptom of dementia.
We also discussed here on Mp that you need to pick your battles. There is no doubt in my mind that when your loved one first shows signs of dementia, getting a diagnosis is the number one thing on everyone's mind.
I have also said that early detection is the answer. The question is
"How do I get my loved one to the doctor, when they are in such a state of denial"?
It is imperative that your loved one is indeed examined by their doctor. However, does this really need to happen today?
What I'm saying is, it may take several days even weeks to try to get your loved one to a doctor for an examination. 
One thing to keep in mind is the disease is not going to progress that much in the time it takes to convince someone to get to a doctor.
What you need to do in these instances is to be creative. Tell them anything that you think will work that will help them to see their doctor.
For example, tell them you're the one that has a doctors appointment. Even go as far to have the doctors office in on this. Have a nurse call your name as if you're the patient going to be seen by the doctor, then of course the doctor's attention will be geared toward your loved one.
The thing to remember is, if you make a big issue about getting them to the doctor things will not go well for you. You may have to try several things, schemes if you will.
Before you do any of this make sure you have some kind of long term health insurance in place for the patient. These policies are very affordable before a diagnosis, not so much after the diagnosis.
You can save literally hundreds of thousands of dollars simply by taking out a long-term health insurance policy. But this has to happen before they're diagnosed.
Early detection and early diagnosis is indeed very important. However, if you have to wait a few days or even weeks to get them into their doctor nothing is going to change.
Unless they have some other medical condition that needs to be seen immediately, don't fret if your loved one refuses to go to doctor today.
As we all know everything changes with dementia patients, sometimes hourly. Just don't panic because you love one refuses to go the doctor.
Pick your battles, as we always say. The stress that you will go through and put your loved one through by bringing this up constantly will not help either of you.
For me as an example, it took a total of five years for me to get a diagnosis. Did I progress in them five years? Of course. My problem getting a diagnosis was my age.
Everyone around me including my doctor simply would not even entertain the idea of dementia. Until of course I finally put my foot down.
The problem I had was that everyone around me it was in denial, not me.

Tuesday, February 24, 2015

You Can't Fix Dementia

Why are caregivers/family members so hard on themselves? The answer is simple. We as human beings want to help those we love. When we can't, we feel we failed, want to blame ourselves, or think for whatever reason that you should have done more.
In some cases, I am sure more could be done. But in most, I am sure every family member does the best that they can do, whether they realize it or not.
Of course a lot of this has to do with grief, and denial. Sometimes many family members are in denial, and then when their loved one does pass away, they could very well experience more grief than those who were there at the time they were needed.
I have said many times, watch people at a funeral. Those who carry on the worse, are most times the ones who did the least.
Everyone wants to "fix" this thing we call dementia. You see it everywhere, you can read about the things that will "fix" this, you can watch tv about the things that will "fix" this.
Here on Memory People™ we don't allow posts that claim to slow the progression, or in some cases even cure dementia. We also don't allow false claims of any kind.
If you believe that love is going to slow this disease or even cure it, then comments like that belong on your own timeline. Not here.
We do allow and encourage members to share their experiences, both good and bad. And then what suggestions we get, some may benefit from them.
However, we can't "fix" this. There is no Neurologists in the world that can "fix" this, let alone someone on the internet posting some new cure-all coming out. But for whatever reason this is what family members, and caregivers try to do over and over.
When your loved one starts being verbally abusive, you are not going to "fix" that. And if that verbal abuse does turn to physical abuse, you're not going to "fix" that either.
If you're loved one isn't eating, your not going to "fix" that. And when your loved one loses their memory, a little at a time, till it is all but gone, you are not going to "fix" that either.
If one would learn that what is happening is because the most complex organ in the human body has a disease, a disease that very little is known about, and even less is being done to find a cure....if people would understand this, they would be better off.
The patient would be better off, and so would the caregivers or loved ones as well. This walking around in total denial to what is going on, or thinking that this will pass, or clinging to some absurd comment that this will get better or things will be alright, does no one any good.
There is nothing about this disease that will ever get better, or be alright. Period.
What you can do, with some good results at times is to try to lesson the symptoms of this horrible disease. That could be done by a whole host of things. I like to refer to it as trial and error.
If your loved one shows signs of wandering, you have to do what it takes to make absolutely sure they do not have the ability to do this. Secure where they are to the best of your ability.
Then, you are in essence trying to lesson one of the symptoms of dementia, that being wandering. You are not going to stop the wandering, nothing will. But you can try to lesson the symptom of wandering, by implementing whatever it takes to make sure your loved one cannot wander.
Same way with them not eating for example. There is nothing you can do when someone decides they are not going to eat. You can't force feed them, a feeding tube would just be ripped out, and just by purreing their food is not going to make them eat.
Some feel for whatever reason that if they won't eat, but if I puree the food they will. Again, you can't make someone eat, or to put it bluntly you can't "fix" this.
Do the very best you can to lesson the symptoms of this disease. Even if you do the best you can, things will still happen. But you can put the odds in your favor by at least trying to lesson the symptoms, no matter what they are.
Thinking things will get better, from loving them more, to trying to get them to exercise, to them reading to stimulate their mind, to preparing their food with coconut oil....none of these things will "fix" any of what is going on with your loved one.
If you can come to grips with that, you will find peace. If you can't, chaos will ensue because things are going to happen, and things are going to get worse, no matter what you do, no matter what anyone tells you.
Have a plan, then have another. Because as bad as it gets today, this could very well be the very best day your loved one has...ever again. 
Get through today. This is what matters. Do not worry about next week, or next month, or about what is coming, but have a plan. You cannot predict what will happen, but you can be sure this disease, no matter what you are told, will progress.
That is indeed the truth. You won't hear this very much on other support sites. Most like to sugar coat this, and have everyone get together and sing Kumbuya. Thinking that love will see you through this, or even suggest that if you love the patient more, this can slow the progression, it will not.
Loving the person is the right thing to do, of course. But thinking that if you love them more, things will be better, they won't.
What I said here is my thoughts. They are not wrong, because they are indeed mine. A patient. Someone can disagree, but they are indeed right, from my perspective. Would you rather take advice from an "expert" who has the credentials, yet doesn't care for a dementia patient, and never has, or listen to what an actual patient tells you?
It's your choice. But believe me, as a patient, what I have just told you is very true. Coming from a patient, not someone who knows the disease from what they learned from a book.

Sunday, February 22, 2015

Celebrity Caregivers

I did this video a year ago. I wanted to repost it. It draws attention to some of the so called "poster boys" of dementia. 
This as always are just my thoughts. For some reason my voice does not match correctly with the video, but you will get the idea. 
No one talks about some of the things I go over in this video, i.e.: Celebrities testifying in front of Congress.
That was my point exactly. So many times a celebrity speaks out and for whatever reason what they have to say is going to change everything. 
It doesn't. It never does. The basketball coach I refer to in this video, and couldn't remember her name is Pat Summit, of the Lady Volunteers of Tennessee. 
I applaud those who have the resources to deal with this disease. It's what some have to say that I take issue with. I hope you get that. That is and was my intention...

Sunday, February 15, 2015

Always Consult With Your Physician

When have some of us not seen this in our loved ones:
Confusion, Slurred or garbled speech, Difficulty understanding others, trouble seeing, loss of balance, coordination, agitation,???
Some will say "Sounds like a UTI to me". And they could be right. "Could be" being the key words here.
Playing doctor is very prevalent in caregiving. What happens is we are with the loved one daily and we begin to think that because we know them better than anyone, we know what is wrong with them.
This can be extremely dangerous. Especially with a dementia patients. First off, can you really gage what is going in with them by them telling you? 
Second is, unless your are a licensed doctor, no one should ever be diagnosing anything. Sure, we suggest here on Mp and that is fine. 
But one has to realize that is just what it is, a suggestion. Along with that suggestion should also be "call their doctor". No one can ever say what is wrong with anyone over some details given in a post on Facebook.
There is nothing wrong with asking what could be the cause of your loved one. How they are acting, feeling, et. But, you must always contact their doctor. 
The same symptoms I described in the beginning of this post, are almost always seen in a UTI. But, they are also found to be present in a TIA. 
What is a TIA you ask?
Transient Ischemic Attack. Sometimes referred to a mini-stroke. They usually last a few minutes. Most signs and symptoms disappear within an hour. The signs and symptoms of TIA resemble those found early in a stroke and may include sudden onset of:
Weakness, numbness or paralysis in your face, arm or leg, typically on one side of your body
Slurred or garbled speech or difficulty understanding others
Blindness in one or both eyes or double vision
Dizziness or loss of balance or coordination
You may have more than one TIA, and the recurrent signs and symptoms may be similar or different depending on which area of the brain is involved. And they can be very similar to a UTI. 
Brain bleeds, and that is what a TIA is, a brain bleed, is a sign that there is a very good chance a massive stroke could happen. This is indeed a medical emergency. 
It is very dangerous and could be fatal to confuse a UTI with a TIA. The symptoms are common sometimes, but one can kill you. Not many I know of have died from a UTI. 
So, do what we always do here. Ask. But remember, no one here is qualified to give any medical advise. Not even if they are a doctor. You just can't diagnose over the internet. 
And us being so large now, it is up to us as administrators and yes even me as the Founder to make sure that no one is diagnosing anyone here. 
We can and do suggest. Just know this. This is the internet, and we can only do so much. What we do here is Support and Awareness. If the topic does get to certain symptoms and what can they be, then we need to be always be telling one another to seek out medical advice. 
No one should ever be telling another member here to change their loved ones medication, let alone to stop it or change the dosage, the amount, the frequency they take it, or any thing like that. 
I was in EMS for almost 25 years and not once did I ever diagnose anyone. That was not our job. We were pre-hospital care. No EMT, Paramedic, or Nurse, is qualified to diagnose. 
It takes a physician to do this. And no physician is going to diagnose over the internet. If they do, you wouldn't want to take their advice.

While I Still Can ll...

We have so many things going on at any given time here. We are growing with leaps and bounds which is a good thing. 
We have our Memory People Community Support Groups™ we are in the process of setting up nationwide. And we have yet another thing to announce. 
Unless you have been living under a rock, you probably are aware of the book I wrote, "While I Still Can..."
That was the hardest thing I have done to date, bar none. I swore I would never do it again. It took over 800 hrs of recordings to get it from my head to paper.
It was indeed a labor of love. I wanted to do a book from a patients perspective. Thousands of books have been done about dementia. 
But few from a patients perspective. And even those who have, are usually influential individuals who I challenge don't have any idea how the common person deals with dementia. 
When you take on a venture like writing a book it consumes you. It takes all your time, and it is for me anyways, it was difficult at times. 
One of the things I have to have when doing a project like this is someone to put pen to paper. 
I have the story, in my head, and I can record it, but obviously I cannot get it down on paper. So you hire a writer. One you are sure you can work with and one you are sure will tell your story as you tell it.
You don't want any additional drama, or any exaggerations. It must be a book that is truthful and will help those who read it.
All this being said, so many things have happened since the writing of the "While I Still Can...". We got Sam since then, and I have declined. There have been many things that need to be said yet, and I want them to get said.
So...we are now in a position to tell you that there will indeed be a second addition to "While I Still Can..." We are only going to be offering this on the ebook platform. 
That keeps it affordable for me to do, and it lets us keep the price down for the ones who purchase it. 
I am proud to announce this, but even more excited to tell you who my co-writer/collaborator is this time around.
You may have heard of this person. They have been here for some time, they keep a watchful eye on what we do here. Offering support from a caregivers and now an advocates role.
They know this disease, and I know by getting this person that what I want to say will be put to paper, no questions asked.
Please help me welcome and thank our very own Leeanne Chames for agreeing to take this on and put up with me while doing the second addition to "While I Still Can..."
I couldn't be more proud to be working with Leeanne, and I can tell you this, as good as the first addition was, this too will be a page turner.
You will laugh, you will cry, but most of all you gain knowledge. And knowledge is power when dealing with this disease.
I hope you are as excited as we are to bring you the second addition. This I promise you will be the last. But there is much more to say. Much more to tell caregivers. Much more to for me to say...
"While I Still Can..." II

Tuesday, February 10, 2015

Memory People Support 24/7/365

You only have to be here a very short period of time to see what we do here. This is not rocket science. If it was, it would have never have happened. 
I am not the sharpest pencil in the drawer, many will agree with this. But I do know that if you can find a service that other people will use, you will become successful. 
It wasn't my intention to become successful when I started Memory People™. I wanted and needed a place that I could go to get answers. 
And nothing I found at the time of my diagnosis on the internet was going to give me the answers to questions I had. That was pain fully seen when I began this journey. 
You can find whatever you want on the internet. That is a fact. The problem is deciphering the good from the bad. 
Many times our members are shut ins on account of this disease or on account of their loved one having it. Many do not have the luxury of going out to a local support group one a month let alone twice a week or whatever. 
I knew this also. What I really knew was for whatever reason people in general didn't want to and were not about to share their souls to complete strangers in some room. 
It didn't happen in all the support groups I had attended, and I knew why. I didn't figure this out because I am the guru of dementia. I figured this out because I am a patient. 
The reason why a place like Mp was never done before, is that no one ever took the time to think about what support is. 
Everyone looks at the Alzheimer Association as the Mother of all support for whatever it is when it comes to dementia. Their name alone tells the story: The Alzheimer Association.
With a name like that, how could they not know about support, and be the very best at it?
Well, here's the rub, they are not. How do I know this? Again because I am a patient. I do not intentionally talk bad about the the AA, because for the most part, what they do, they do better than anyone else. 
It just so happens, it's not support. It's not. And this is not a bad thing. Everyone can't be the very best at everything. 
What the AA is good at, better than anyone else in this business, and it is a business, is raising money. Every time you turn around they are asking for donations. 
Which most of the monies they get, they will tell you straight out is used for research. Which again is a good thing. But if you are new to this dementia thing and you look for the AA to reach out and "fix" this, have all the answers, or whatever, you have made a mistake.
I did. They helped us out more than we could ever repay them. This is why whenever asked I indeed do speaking engagements for any event they ask me to.
But. And there is always a but. But, they simply are not what I would call on the cutting edge when it comes to support. Not all the support groups I am sure are run as the ones I have been to, but many are.
And there indeed is the problem. I have been involved in our local AA support group here locally many times. Our daughter is a social worker here locally and in fact works where the local AA support groups are held.
There are pamphlets that are passed out, there is articles read in these pamphlets, there is a time limit of one hour for the meetings. If you are a patient, you are not invited. I was the first patient to ever attend one of their meetings and that is only because I invited myself.
The problem here is they look at support as they have for decades. Nothing has changed, they have not evolved if you will. And this is always a problem no matter what business you are in.
We were watching videos on VHS tapes that were at least twenty years old at the meetings I attended. This to me is not acceptable. You have to know dementia to talk about dementia.
I was told when I started Mp it would never work having patients and caregivers together. I was told this because of narrow thinking people. The one who told me this in particular was a very well known proponent of dementia.
What they say, people listen to. Sadly. No one person or organization has the corner market on dementia. What we do here works, that there is no debate about.
Is it for everyone? Nothing is. But you will not find any better support, anywhere. What you read here may be and has been told to be many times hard to read.
That alone should tell you something. We are taking on the tough questions, we are talking about what others will not. When you come to Mp it doesn't matter if its two in the afternoon, or two in the morning, someone is here to talk to.
That is support. We don't have hours of support. We are here, open for business 24hrs a day, 365 days a year. We don't have months that we proclaim National Dementia Awareness month.
We do this here, everyday. We don't have requirements, or little anyways. What we do here is listen. We listen and we support one another. For those who can't get out to a local support group, what you have here is indeed a gold mine when it comes to support.
It just is. We don't talk about cures, or the latest concoction coming down the pike that claims to be that one thing that will make your loved ones life easier.
Here's the deal, there is nothing. There isn't and there most likely won't be in my lifetime. What we can do, is what we are doing. Supporting one another.
Tackle the hard topics, give advice, suggestions. But most of all we let each other know you are not alone. When you have no one to turn to, at three in the morning and you need someone to talk to, to vent to, to just know someone is there who cares, try calling the AA 800 number.
Or any 800# for that matter. Or come here. See where you get the better support. Every time it will be here. What we do, we do better than anyone.
And it doesn't cost you one single dime. You can't beat this. And we are and will take support and turn it on its head. We will and are changing the very way people look at support.
And that is a good thing.

Monday, February 9, 2015

Are You Having Memory Issues

Are you having memory issues?
The thing to do if you think you are having some memory issues, you probably are. You need to call your doctor, get an appointment and have some tests ran.
It could be stress, it could be a thyroid problem, it could be low Vitamin B. It could be a blockage of some kind to your brain, or it could be some form of dementia.
The thing is, stressing over what it could be does you no good. Stress is the one thing they tell all patients to stay away from.
Just worrying about or if you have memory issues is stressful and causes anxiety.
I knew what mine was. Not the term for it, but I knew what it was and what it wasn't. I knew it wasn't stress. I knew it wasn't my job. I knew it wasn't because we had buried my daughter some ten years prior to this. I knew it wasn't a health issue.
I knew I was having memory issues about five years before my diagnosis, yet each one of the things I stated my doctor said could attribute to my memory issues.
They didn't. It took me five long years to get an official diagnosis. That was I think attributed to my age. I had issues at 50 years old, maybe sooner. And most people think of dementia being an "old persons" disease.
Know this. You will know if its a real problem. I did. It's not like forgetting where your keys are at. It's like having your keys in your hand and not knowing what they are for.
In any event, call your doctor. Have some tests ran. They will do the most simplest ones first. The mini-mental test, test for thyroid, blood work, then a CAT scan and perhaps an MRI.
The results will tell your local doctor what to do next. Refer you on to a Neurologist, or if it is indeed something that can be "fixed" with medication or whatever.
And remember, the mini-mental test is just that. A test. It does not and cannot confirm you have dementia. It's a test to see if other tests should be ran. 
Any given day your score on these mini-mental tests can and will fluctuate. Stress causes it, anxiety, nerves, just being at the doctor can make you do bad.
It is not a pass or fail test, it's a test to determine if other tests and what other tests would be appropriate. And, the kicker is, even the MRI, or CAT scan is not going to tell them difinately if you do indeed have dementia or what type.
Only an autopsy of the brain will do this. Common sense prevails here. If you are having shortness of breath, you see your doctor, if you are having chest pains, you see your doctor, of if you have anything that is making you sick, you make an appointment. This is no different.
If you are having memory issues, by all means, see your doctor. And one thing to keep in mind, if you are having issues, get some long term health insurance in place before you see any doctor. This may seen a bit over the top, but if you do indeed have some form of dementia, this will save your hundreds of thousands of dollars in the long run.

And if its not dementia, simply cancel the insurance. It is very important to do this

Saturday, February 7, 2015

Slowing The Progression of Dementia

Many would be hard pressed to know I have dementia unless around me for a period of time. 
There is nothing wrong with tests to see where you may be with one's disease, but I don't think that any of them are accurate. 
One can not even get a diagnosis that will tell you that you do indeed have dementia. 
It's like a high probability, or could be, or perhaps, etc. Without a autopsy of the brain, there is no way of knowing for sure. 
Any neurologists will tell you this worth their salt. What one needs to bear in mind is that what works or appears to work for one, may not others. 
To date, there is nothing to slow this disease, or to cure it. Are there concoctions out there that say they will slow the progression? Absolutely. 
Take the exelon patch for instance. About three years ago they had an ad campaign that stated that the patches did indeed slow the progression of dementia. 
The FDA took notice, and to make a long story short, the makers of the exelon patch did indeed have to quit marketing their product as a one that would slow the progression. 
They amended it to say, "The patch may lesson the symptoms of dementia."
As with all the products that claim to slow progression, there is always the words: may, could, perhaps, might, etc. slow the progression.
As I stated before, there is nothing the FDA recognizes that will slow the progression of any dementia. What they are allowed to say is "this product may lesson the symptoms".
To date, after five years being diagnosed and about eight dealing with memory issues, the only medication I take is the symptoms of dementia. 
For example, I take pills for anxiety, stress, nerves. I take pills to sleep, pills to help with the nightmares, and on and on.
I do not take one thing exclusively for dementia. This is my choice. In time I will try either Aricept or Namenda. But for now I just take medications to help me cope with dementia.
The thing one wants to remember is, despite the claims and there are many, but despite any claims of any product, there is nothing to slow the progression of this disease we call dementia.
Are there caregivers and even patients that will swear what they are taking helps, even slows the disease? Of course.
This is a case of mind over matter. If you think by taking coconut oil, fish oil, or whatever helps you, then you probably will see what you want to when taking any medication.
But the reality is, there is no medical evidence in any AMA ,the American Medical Association that any product will slow the progression of dementia.
You can find literally tens of thousands of articles on the web that will say their product or some product does indeed slow the progression.
If you talk to enough people, as I have over the years, you will also find many that swear that their loved one is improving because of whatever they are taking or dong.
Take this for instance, if some people know what some side effects may be with a certain drug, they for whatever reason will have ever side effect the drug my have.
They obviously don't have these side effects, but they know about them, hence some just have them. Mind over matter, again.
I am not trying to be a Debbie downer here, I am simply trying to inform those who for whatever reason are uninformed.
If you as a patient are taking something that you know has improved you dementia, you should think about this:
Coconut oil, fish oil, and just about any herbal concoction can run less than twenty bucks a jar or so.
Do you really think that if the makers of coconut oil knew for a fact that their product slowed the progression of dementia, it would sell for twenty bucks?
Of course not. If any product indeed slowed any form of dementia it would not be affordable to the common person.
We used to use a drug when it first came out in EMS, was called a clot buster. There were many things that had to coincided to even be able to use this drug.
It indeed saved lives. And it indeed did what it said it would. However, it was not found in your local pharmacy, nor could you doctor just give you this drug in his office.
And back then, when it fist came out, it was well over $5,000 a pop. If this drug was given it costs thousands of dollars. Why? Because they knew and the FDA had approved it for use in some cases to do just what it says it will.
Bust blood clots, which in some cases saves lives. My point is, if and when a pill, or whatever is produced that indeed slows the progression of dementia , you will pay dearly for this.
And you won't find it at your local herbal store, Walmart, or even your doctor won't be able to prescribe it in the beginning. And it will cost thousands of dollars.
Why? Because they can. There are cancer treatments that run in the hundreds of thousands of dollars. There are heart procedures that too cost hundreds of thousands of dollars to preform.
It's the way the world works. So think about it next time someone claims to be taking something that indeed slows the progression of dementia.
They are not. Period. That is the truth of the matter. And that is what we do here, advise of what is true, tell you what indeed you need to know.
Instead of what you want to hear. None of this is because Rick's medical fact. Those who disagree, and that is fine, but those who disagree need to show medical certainty of what they talking about.
There simply is none.
Something I forgot to add. I had been going to see a Neurologist in Columbus, Oh. He was indeed the head of the Cognitive Unit at Ohio State University.
He was a good man, very intelligent, very articulate. It took me 15 months to get in to see him. I went there four times. Each time everything was fine. He would start off each time with a barrage of questions, and we just weren't getting anywhere.
This visit took a total of ten minutes, but it also took us a total of seven hours total to get there and get back home. I quit going to him on my own, after the fourth visit.
The only reason my family physician recommended him was if and when anything was discovered that may slow the progression, I would have a better chance of getting whatever it is through him, not my family physician.
I have been going to my family physician ever since my diagnosis. He in fact referred me to my fist neurologist. And I have been seeing him every six months since.
Only until after seeing him for three years, one day I was not having a good day at all. All the other visits he had seen me I was happy, felling good, all was well.
This particular day he got to witness a bad day. He couldn't believe his eyes he told us later. That day he tripled my medication. Simply on account of what he seen that day.
I cannot tell you enough, that any appointment to any doctor doesn't necessarily mean the doctor gets the whole entire picture of what is going on.
Mine didn't for well over three years. So, take that for what it is worth. These doctors only see your loved one a matter of minutes, a couple of times a year.
Is it no wonder they don't have any clue as to what is really going on???

Friday, February 6, 2015

What Is Dementia Like?

"When will the madness end?" "When will things get better?" Questions we all ask. Everyone wants answers. And you will see some answers, from some "experts". 
But is it what a patient indeed goes through? Is what they are telling you, is that what it's like to be a patient of this horrible disease? Or are they wrong.? Here is my take on this disease. From a patients perspective. 
The truth of the matter is this madness will never end. It will sometimes subside. You will see glimpses of your loved one from time to time. 
But end? Not so much. This is the only disease known to man kind that there is no cure, there is no reversing it, there is no slowing the progression...and there are no survivors. 
I have read that sometimes the posts here are hard to deal with. Let me tell you what hard to deal with is.
Taking your grandchild to school, listening to her stories, and knowing one day you will won't even recognize her. 
You will likely not see her graduate, her wedding, or her children. Dementia has a predetermined outcome for you. It takes a little at first. 
Some of your short term memories. Then slowly but surely it takes all of them. Then in time it begins to take your long term memories as well. And in time, dementia will indeed take all of them.
All along, you do realize that this is happening. And there isn't one thing you can do about it. I think many times what will happen when I can no longer remember who I am?
Who those are around me? What will it be like? Will I be scared? More scared than I am now at times? Is that even possible?
Many times I am asked what is it like to have Early On-Set Alzheimers. This is what I have come up with.
There is a drug called Versed. It is used for minor surgeries, dental procedures, etc. We used it a lot in EMS work. What this drug does is erases your memory. Your short term memory to be exact.
It has a short half life, meaning it only lasts ten or fifteen minutes, but the effect is astounding. You give this drug to someone and they will not have any recollection of anything that has happened in the last few minutes, and with some, the last few hours.
It completely erases ones memories. Short term ones anyways. I say give this drug to someone. Then when they come to, have them in a strange building, one they have never seen.
Surround them with items they have never seen. Can be anything, just things you are sure they would not recognize.
Then don't have anyone in the room with them. They are all alone for say five minutes, then one by one, people, complete strangers begin to enter this room and talk to them as if they have known them their entire lives.
Talk about things they have never heard of before. Talk as if one of them is their daughter, their spouse, and their pastor. Tell them they are so sorry for their loss. All the time the person will be wondering what is going on.
Then tell them that you have decided because of their prognosis that you would be taking food and water from them. And then, tell them that everything is going to be alright. What is about to happen will be okay.
Then leave the room. Tell them you will see them later. And you will be praying for them...then leave them alone. Entirely alone.
This wouldn't begin to show what a dementia patient goes through. But you can believe this, it would be a whole lot closer than the virtual dementia tour.
Trust me. Why? Because I am a patient. Not someone who talks about dementia as if they have had it. But someone who lives with this disease day in and day out.
"When will it end"? It won't. The only time peace will come is when we take our dying breath. Isn't it strange that for me to find peace with this disease, everyone around me must then grieve.
That is dementia. And this is something we live with, as patients. Caregivers too die a little bit each day along with the patient. It is the most devastating thing you will ever encounter in your lifetime.
As a patient, or as a caregiver. It just is...

Tuesday, February 3, 2015

Looking Past Denial

Denial. You can see denial in all walks of life. Most prevalent after the loss of a loved one, or in our case here, dementia.
I have said many times denial should be a symptom of dementia. Someday someone sitting behind a desk who knows little to nothing about dementia will figure this out and it will become a symptom of dementia. 
You ever notice a lot of what happens in the world of dementia comes from some CEO, some head of an organization, that again usually has no idea about what it is like to have dementia?
This has always been something I could never wrap my head around. There are few non-profits that deal in the world of dementia that have a patient on their Board of Directors. It's unheard of basically. 
Why? This to me is a form of denial. Most have good intentions. But there are some who will plug along doing what they think they should for the patient, and family of this horrible disease, yet have not one patient to confer with. 
Memory People, Inc. not only has a dementia patient on it's Board of Director's, the CEO is in fact a dementia patient. Tell me another organization that does that.
You know why we did? Because it made sense. If you look past denial, and do what makes sense, you will be successful. In caregiving, in dealing with a patient, in business, etc.
Some will think I am the CEO of Memory People, Inc. because I am the one who got this whole thing started. That would be wrong. I am CEO because it makes sense. 
90% of what goes on around here I have a hand in. 90% of what goes on around here I have even came up with. 90% of what goes on around here I may have even thought of.
But 100% of what goes on around here is indeed a joint effort. I could not do the things I have done if not for the people I have around me. That I knew very early in life. 
If you want to be successful, surround yourself with people smarter than you. I have always done that. Hence, Leeanne Chames, Louis Chames, Michele Talbat DeSocio, Tia Nicole Bookless, and of course Phyllis June Phelps.
These are just a handful of people who make what I do look effortless. I come up with some off the wall idea, and they make it happen. 
At Memory People, Inc. we have a great Board of Director's. Like I said, I am the CEO, but we work as a team, as any business should. For the greater good. 
There is never and has never been a hint of denial involved with what we do. Every idea I come up with is not always right. Leeanne and I are the first to lay it out there, make sure it's good for all involved, and see if it is feasible to pursue. 
This we do day in and day out. There isn't a day that goes by that she doesn't have the utmost confidence in me, and I in her. When she tells me, "We may have to look at this another way", or "Let's get the others involved and see what we can come up with", I know to listen. 
Leeanne and all the others have always had confidence in what I want to implement. But they also know that there are times I need to be reeled in.
I have done all of this in spite of dementia. Because the people I surround myself with are indeed good, honest, hardworking people who want the same thing I want.
And that is to make and keep Mp the site it is, to always be looking to improve where we can and what we can.
If anyone of our Board members had one thought of my ability to do what I am doing, I would not be in the position I am.
One day, I will not be able to do what I can today. Some days I can't put two thoughts together. We have made arrangements for that day. We looked ahead and we created a plan. And then another.
It's what you do when you face this disease. Denying it as many do, you will never get anywhere. This disease will progress. No matter what anyone tells you.
And being in denial should be in my mind a symptom of dementia, not just a thing people go through. I may have been in denial a day, maybe two. But it didn't last.
I don't have time for self pity, or denial. I am so sorry for those who are in denial. Every day spent in denial is a day you will never get back and there will come a day you will understand this.
There are many symptoms your loved one will struggle with. Denial is one of the worst. If you can't come to grips about what is happening to you, how can you every hope to live your life "While You Still Can..."

Monday, February 2, 2015

If You Want To Know About Dementia Ask A Patient

Being a patient, in what I would consider the mid stage of this disease I wanted to go over something that some people miss. 
I don't know if miss is the word. Perhaps misrepresented or confused. It is no wonder with all the so called "expert information" one can find on the internet that upwards of 90% of it is simply foolish. 
As always, these are my thoughts. I am not an expert. But I am a patient. That leads me to the first misnomer of this disease. 
Here's the deal, there are no experts. Period. You will find that most who claim to be "experts" have nothing more than a list of titles after their name. 
It will never cease to amaze me as why or how those who consider themselves "experts" don't have dementia. 
This is no different then someone claiming because they have a garage, they are a mechanic. Experts? There aren't any. 
I have been to many symposiums where there were countless "experts" scheduled to speak. Not one of them, not a one, were dementia patients. 
Am I the only one who finds this odd? No, of course I am not. But what happens is when someone is deemed and "expert", we just assume that they are. 
This is not only false but it's dangerous. At these symposiums there are people in the audience who are there to learn from these "experts" and take whatever they say as gospel. Take what information they are given and go back and apply it to their loved one, or in some cases the facility they work at.
What these "experts" are giving is nothing more than their opinion. Some of these opinions are sometimes right, some of them are absurd. 
I am going to give you a perfect example of what I am talking about. At one symposium I was asked to speak at, right before I took the stage a well known "expert" in the field of dementia did a skit on how it feels to be a dementia patient. 
I had never seen this done, had no idea what was about to be displayed, so I was interested. Being a patient, it was indeed interesting to me how a non-patient is going to show how a patient indeed deals with dementia.
This alone if you think about it is absurd. But I was waiting to see just what was going to happen. The person in charge of this "side show" and I call it a side show because of what was done, picked out three people in the audience.
These three people were then told given oven mitts to put on their hands, they were given glasses that the lenses had been fogged over, there were given slippers with marbles in the them, and they were all given head phones that had music blasting in them.
After they were donned with all these things, they were told to complete three tasks. Three simple tasks. None of them could do these tasks, which was no surprise, but what happened was appalling for me to sit and watch as a patient.
It was indeed one of the most degrading things I had ever witnessed as a patient. In a room full of professional, and the "side show" being put on by an expert.
This lasted about forty five minutes. Everyone was yucking it up, getting a real good laugh out of these people chosen from the audience trying to preform three simply tasks, and see what it is like to have dementia.
I was furious. If you don't know by now, I am a person who will tell you what you need to hear, not what is politically correct. I am not in this to garner friends or to make others feel all warm and fuzzy inside.
I was to follow this so called "expert" and I remember to this day Phyllis June telling me "Rick, please don't." She didn't even have to say what don't meant.
I knew, and she knew. She didn't want to comment on what I had just witnessed. I was there to talk about what I go through, and what we have done since my diagnosis.
Well, I did just that. I talked about what I go through. But, I talked about what I had just went through as a patient. I told the audience that I figured the next "expert" to take the stage after me would be someone who could show us how a blind person reacts to their loss of site.
You cannot cover your eyes for five minutes and have any idea of what a blind person deals with. This is a no brainer. But yet I had to sit there and witness what this "expert" had shown, and was to believe as others there that this is indeed what a dementia patient goes through.
I earned a lot of respect that day. Not from the "expert" of course, but instead of people coming up to me after the symposium and talking about their loved one, they were indeed apologizing for what had taking place here.
Sometimes it helps to tell the truth about something, better than to just let things go on without challenging it. There is no doubt in my mind that the person putting on this exercise did indeed believe that is how a patient with dementia feels.
Here's the real kicker. I have not yet found one dementia patient who has seen this exercise that does indeed agree that is what they go though as a patient.
That is the thing. It's because we don't go through these things they staged, but its because we are patients and can tell you we don't, yet some "experts" continue to do this to show what a dementia patient deals with.
That to me is not only unprofessional, it's down right dangerous. If you witness one of these experiments, and you indeed come away with a better understanding about what a dementia patient deals with daily, well, again you have just been used.
They even have a name for this exercise. It's called the Virtual Dementia Tour. Some woman came up with this, and you guessed it, she doesn't have dementia.
But, she knows what a dementia patient deals with, how the react, how they have issues seeing, feeling things, and on and on.
What this is, is not ignorant people, it's people ignorant of the disease. I'm sure the woman who came up this exercise is a very nice lady.
She's just wrong, that's all. And what is even more scarier then that, the some so called "experts" in the field of dementia swear by this side show.
If you don't remember anything thing else, remember that all that you see, read, and even hear about this disease is no better then the person you are getting the information from.
At that symposium, we received the highest remarks on our segment of the day. They always do a survey on what was enjoyed the most. We once again came out on top.
And it wasn't or isn't ever because of who I am. It is always because of the story I tell. It is a story of a dementia patient. Not what someone thinks a dementia patient deals with.
But a story told to the audience of a dementia patient, by a dementia patient. And that is what people want and need to hear. The rest is smoke and mirrors.
When someone has to rattle off their titles, the "why I know what I am talking about", they most generally are just trying to justify what they are feeding you.
Titles and accomplishments are fine. But having a masters, or even a PHD in something does not make you an expert. It means you studied the topic and did well in school.
You want to know about dementia, ask a patient. You want to know about caregiving for that patient, ask a caregiver. Not someone who studied about dementia or studied about caregiving.
What I go through you can never learn in a book. What caregivers deal with is also not learned in a book or at some seminar. I have often said if you think you are born a caregiver, just try being a caregiver for a dementia patient for a week or so.
There is no comparison to doing that, as you would if caring for a cancer patient, or a stroke victim. There isn't and there never will be.
The next time you either read what an "expert" has to say, watch a video, or perhaps indeed see one in person, ask yourself what makes them them an expert at all?
Most are introduced as an "expert in the field of dementia". Well, this is not a field, this is real life. And if what you are saying or doing is your opinion, than state that.
Don't tell me that because you are claiming whatever that makes it so. It doesn't and it's degrading to a patient to see some of these things that are talked about or done.
Experts? There are none. There are patients, and there are caregivers for those patients. And most of them will tell you, "I am just getting by day by day".
Those of us know if we can get through today, that is a good thing. Because tomorrow is another day and as bad as today was, it could be the very best day your loved one has, ever.
Please instead of liking this post, think about it. That is what is needed.Ask A Dementia Oatient