Thursday, April 28, 2016

Dementia Happened, Ask A Patient

We have a lot of posts lately about your loved one doing something they never did before.

Be it, eating something they never liked before, wearing their favorite coat in the heat of the summer, or drinking their coffee black, when they have used creamer for 40 years.

These things are red lights. Meaning they are things that are so apparent and easy for you to spot.

"Mom loved to cook. Now she can't even make toast right. What happened?"

Dementia happened. That's what happened. I don't care what any body says, this disease effects everyone different, yet so many the same.

What I mean is if you have lewy body, or vascular dementia, or Alzheimer's...whatever diagnosis your loved one is diagnose with, we all deal with many of the same symptoms.

Dementia is as we know the "umbrella" and other types such as Alzheimers, Lewy Body, EOAD, Vascular Dementia are just types of dementia.

In other words, we all suffer from the same thing, just different causes. Vascular dementia is most the time attributed to lack of blood flow to the brain, hence the term vascular.

When your loved one does something, no matter if is putting cream & sugar in their coffee, or forgets the first thing about cooking, we must understand these are symptoms of the disease and nothing is going to "fix" it.

In the whole scheme of things, I like to tell people as alarming as it is Dad now drinks his coffee with cream, when he never did...or Mom puts the dishes where the pans go...all these are little intricacies that are going to happen, yet aren't really the end of the world.

If you are new to this dementia thing, it's a shock that Dad no longer wants to have anything to do with fishing. This to you is a real game changer, but in the whole scheme of things it really isn't.

We think of it as they are progressing, and they very well could be. But sometimes it nothing more than reverting back to what they did in their childhood, or an earlier part of their life.

Many times our loved ones won't recognize you, let alone know you are their spouse. They have no idea that they have any kids, let alone three.

These things, the little things, and the huge differences you will notice are going to happen. Get ready. Cause if they haven't, they are coming.

I can tell you from experience, I don't hoard or hide anything. What I do is put things where I think they belong.

Remember that next time you find silverware in a sock drawer, or milk in the cubbord.

90% of patients are not hoarding things, they are simply putting them where they belong. I have challenged many folks on this. To me, a patient would have to consciously have to realize the item they want to hoard, or hide, and then do that very same thing over and over.

Patients just can't do that. They don't have the ability to to think "I will hide this for later." There is no later for them, thus they don't consciously hide things to retrieve later.

In my opinion, which I can be wrong, but what I do is not hide anything. I simply put things where they go. Sometimes it's right, most generally it's not.

But if I did not do what I am doing right now, explaining that I indeed put things where I think they go, everyone would indeed assume I am indeed hoarding things, or hiding things.

That isn't the case with me, and my guess is most of the time it isn't with your loved one either. We have been told all our life about people hiding things or hoarding them when they get older.

What I am saying is just because this was instilled in you for your entire life, does not mean this is what is actually happening.

I am not an expert in dementia symptoms or what one patient may do versus another. But I can tell you this, I am a patient and as a patient I have sat on my hands in many a symposium chomping at the bit, not being able to get up and explain that what was just witnessed there was, to put it nicely absurd.

I hate it when non-patients are the experts. I always have, I always will. If you car breaks down, do you call a mechanic, or would you call your doctor?

If your standing in a gymnasium, that doesn't make you a basketball player. If you want information on the weather, you don't watch the History Channel.

In other words, if you want information about dementia why would you go to a person who has never had dementia? I am not saying doctors don't know what they are doing...I am saying there are people out there who claim to have all the answers as a caregiver.

They don't. No one does. This is a huge money making business this dementia thing.

Like I said, there's big money in dementia. And people pay sometimes thousands of dollars to get certain speakers in. And not a one of any of these "experts" have dementia.

Not a one...so be careful who you put your money on. There are very good people out there, doing very good things. But there are and there always will be charlatans.

Someone making a buck off of someone else's demise. Just listen to your heart, and perhaps a patient now and then. I will guarantee you won't go wrong...

©  Rick Phelps  2016

Tuesday, April 19, 2016

Can Alzheimer's Be Stopped

There was a special on Nova last night titled "Can Alzheimers be stopped?"

I started watching it, and the one of the first things I heard was the son who was doing this documentary saying that his Mother is not here anymore.

He then clarified it somewhat, but statements like that take away all credibility. When you say that your loved one is not here anymore, what does that mean?

Of course their there. Obviously not in a way that they once were. This is one of the stigmas that go along with dementia of any kind.

Patients have feelings. They feel fear, loneliness, confusion, and on and on. Some of these feelings are more intense, some less.

At any given moment things change with the demeanor of the patient. They can be here, talking one moment and the very next become almost comatose.

What happens here is all caused by having a disease of the brain. The most complex organ in the human body.

The truth is, there is a cure in sight. When is the million dollar question. I have been hearing about a cure in sight since I was diagnosed in 2010 and started paying attention to these things.

However, they are not one bit closer to cure then they were twenty years ago. This is very difficult to hear, but it is the truth.

These documentaries are what I refer to as a flash in the pan. Their on tv, then forgotten about. Only those affected by dementia even watch.

The title say it all. "Can Alzheimers be stopped?" The answer, and I have not watched this show yet, but he answer is no. Not yet.

Someday. Probably. But like I said we are no closer today then they were decades ago in finding a cure.

I suppose I look at this different, being a patient. Caregivers, family members and loved ones want a cure so bad, they sometimes have blinders on.

Here's the deal and I have said this for years. If there were a cure today, and of course there isn't. But if there were, it would be decades before it would filter down to the common person.

First off, the FDA would have to approve this, which would take years. Then, and this is what they don't tell you but only a few would be able to afford what ever drug they have found that does indeed cure this horrible disease.

The concoction they had for AIDS back in the eighties that put people into remission was tens of thousands of dollars a month.

Again, I am not trying to be a Debbie downer here but when I see programs like this they simply are not telling you the whole story.

I am not a doctor, nor am I physic, but I am telling if you were diagnosed today, the chances of them finding a cure in your lifetime are slim and none. When they do find a cure, that won't reverse dementia to those of us who already have it.

I wish these people would focus on making the life of a dementia patient at least more tolerable. If they could come up with something that actually worked for the symptoms of dementia this alone would be a game changer.

But all you hear is about a cure that is coming. Why? Because it sells. I have always said that dementia is big business. There are people and organizations making tens of millions of dollars from this disease one way or another.

The Alzheimer Association is perfect example. They have helped us out immensely in the beginning but have lost their way in my opinion.

To them, it's about the money. When you have a CEO making $950,000 a year, being the head of an organization like this how on earth can anyone justify this as a non-profit organization?

They are not the only ones. The head of the Goodwill makes close to million dollars a year, the head of the Red Cross, and on and on and on.

The reality is the AA is not going to cure dementia. This is a farce. The only entity that can and has the resources to find a cure is the Federal Gov't. Us, in other words, the tax payer.

Until out Gov't gets there head out of the sand and understands that this will become an epidemic, there will be no cure.

It is going to take decades, and trillions of dollars. And the bottom line is no documentary nor any walk for a cure is going to do anything.

In the year 2050 it is estimated that dementia alone and cost of it for patients to be cared for will cost taxpayers over 20 trillion dollars to fund. Through Medicare/Medicaid or whatever Gov't program.

This will indeed break the bank. We as a nation simply cannot afford this. It will collapse the health care system.

The issue here is no one in Washington cares. Period. They will, but they certainly don't now. To get a handle on this would mean tax increases and no Congressman or Senator is going to entertain this idea. That would be political suicide.

The ones who are blowing smoke, who say this will cured by 2025 won't even be in office in 2025. It sounds good now. Plays great for the cameras and for re-election. There is even a well known organization that demands a cure be found by 2025. Demands? This too is joke. Their slogan one year was "Alzheimer Sucks".

Well yes it does. But when you have a slogan that says "Alzheimer Sucks", that to me again takes away your credibility.

I have been to Washington. Sat across the desk from some of the most powerful men in the Gov.t and can tell you without a doubt, they don't care.

They sit there and look at you like you have two heads. They shake their heads up and down but have no intention of putting forth a Bill that would increase the spending for research to an amount that it is going to take. These people do not have your best interest in mind. Period.

I will watch the Nova special. Well, maybe. From what I gather it's more about getting people into clinical trials. Which is a whole other story.

I will say one thing about clinical trials. Whether you are for them or against them, think about this. When was the last time you heard any out come from any clinical trial?

They have them, but I for one have never once heard an outcome on one. I have asked, but have never gotten a response as to what they learned.

Here is where they are on one particular clinical trial. They have this rat. A rat that they say has dementia. That alone should make you say, "What?" But anyways, theres this rat, who has dementia and they give this rat some concoction and it has a positive reaction.

And that means what? Not only do they claim to have a rat that they know has dementia, but after given a drug to it, and not to other rats with dementia, the rat that got the drug seemed to act better. Now you tell me, how does anyone know a rat has dementia.

Common sense tells you they can't even diagnose human beings to a certainty. To me this is a total waste of resources, but again it's a trail.

That isq where we are. You can't make this stuff up. This is why I have said over and over, what we do here at Mp far exceeds any clinical trial or scientific study they are doing on rats.

You may not like what you read here. You may not want to accept what is going on with your loved one, but you will hear the truth here.

No sugar coating. No pampering. We simply don't have time for it. What you need to do is deal with what is happening today with your loved one. Not next month, six months, or six years.

Of course you need a plan. You will need several plans. And most of those plans will go out the window. But if you deal with what is happening today. Tell your loved one you are there and will be. Tell them how much you love them, and do the very best you can to deal with the things that come up....you will be far better off than any documentary will teach you.

There are three simple questions I tell people to ask themselves about their loved one.

Are they safe?

Are the pain free?

Are they content?

If you can say yes to these three questions you are making a difference. And that is all any of us can do. Try to make a difference in the dementia patients life. "While We Still Can..."

© Rick Phelps 2016


Dementia Service Dogs, Pros and Cons

Changes. The one thing dementia patients don't do well with. Every dementia patient has a routine. Even if you don't realize it, they do.

Could be something as small as always sitting at the dinning room table in the same chair, or always drinking out of the same cup, perhaps it's putting their socks on before their pants.

Little things. But these little insignificant things, to the patient keep them grounded. Why? Because we don't do changes well.

It has to do with we are comfortable with what we know how to do, things we have done for decades. Anything new thrown into the mix and it can cause chaos.

Daylight savings time is a great example. It can throw anyone into confusion, imagine what it does to the dementia patient.

The best thing to do as a caregiver to cope with routine is to let it happen. Don't expect or ask the patient to do something they are not familiar with or comfortable with.

I need to know for example if we are going to do something well in advance. In other words, Phyllis June knows not to come home from work and tell me we are meeting someone for dinner.

I have to prepare myself for such a thing. Why? Because I have dementia and the disease makes me this way.

Surprises don't work around here. I have to know exactly what is going on, when and where. I will always forget, but I have to know and be reminded. Because, again of the disease.

The subject of service or therapy dogs has come up on Mp several times in the last few days, and this is very important when it comes to changes.

In my opinion, as a patient, a service or therapy dog is something that has to be introduced to the patient very early on. It's very difficult to get your loved one a dog of any kind in the mid to later stages of this disease.

As intelligent as Sam is, he needed direction for the first couple of weeks. He needed to learn my routine. Which he did in a matter of days.

The problem with service dogs is not the dog, it's the patient. Sam's biggest problem is not doing something he should, it is me letting him do other things.

This will happen. All the training in the world will come down to what the patient allows the dog to do.

I told the trainer in the very beginning of this journey with Sam, that he needed to be trained so that I would not have to work with him.

And, thankfully Sam is. I don't have to get him to follow me, or keep his attention on me. He does this, and has since the very first time we met. He has never left my side.

I did get Sam very early on. And that was the key. You can't expect a dementia patient to work with a service dog to get him to do what he is already supposed to do.

This is where many trainers, handlers, make their mistake. They will tell you that the new owner has to work with the dog. That I can tell you doesn't work.

One of the very first things that is forgotten when getting a service dog is that the dementia patient, the new owner of this animal, has no short term memory. When you get your dog, most trainers will say we need three days for you to train with him.

That didn't work with me, and it won't work with your loved one either. Fist off, their routine I spoke of just went out the window. They now have a four legged animal that will or should be with them 24/7. And they are expected to work with the dog? Not going to happen.

That in itself takes some getting used to. Then even the smallest things, things you never think of happen. The most aggravating thing about having a service dog has nothing to do with their training, the handling of the dog, or any of that.

The most difficult thing is how others do around the dog. Family, the general public when out with the dog is very difficult.

Every time we go anywhere, Sam has his vest on which clearly states he is a working service dog do not pet. Which means nothing to most people.

I have to hear at least ten stories every time we go anywhere about other peoples dogs, how they died, how they act with them, how they look so much like Sam...and on and on.

Parents let their kids run up to Sam, which is very dangerous. Sam does not do running, or approaching me like that. That alone puts him on high alert. Which puts me on high alert, and the stress ensues.

We live in a small community and most everyone around either knows me, or knows of Sam. We have been on the front page of the paper with stories about Sam many times over the years and you would have to be living under a rock not to know about Sam and I.

Every interview I have ever done with Sam I have pointed out he is not a pet when out in public. He is working. He doesn't take his eyes off of me and what is happening around the two of us. Its what he was trained to do and does this very, very well.

When we are at the camper for example, he is a pet.When we are at home, he is a pet. He plays like any other dog would, but he never, ever gets out of eye sight of me. Ever.

The very thing a dementia patient wants to stay away from is being the center of attention. And a service dog does just the opposite. They make you the center of attention.

You would think no one has ever seen a service dog in Red Lobster, or Lowe's, or McDonalds. It doesn't matter where we go, we hear the same story.

They want to know what he does for me, and tell me their life story about the dog they have or had.

This again is very stressful. Imagine going to Walmart and having to deal with this in every other isle. Parents letting their kids reach out to pet Sam, even adults just walking up and sticking their hand out, all the while he has his vest on saying, working dog, do not pet.

Service dogs are wonderful. And I wouldn't trade Sam for the world. But they do create a great deal of stress. The dog doesn't, its the people around him that do.

If you are contemplating on getting a service or therapy dog for your loved one, make sure they understand what is going to happen. This isn't something you want to surprise them with.

Sam has done more for me than all the meds I have taken. He takes my stress level from a 12, to a 3. It's what we have to deal with, with the general public that is the issue.

And most times no trainer will tell you this. And this will cause havoc and chaos to a dementia patient. Not to mention throw them completely off of any routine they had before getting the dog.

Something to think about. Service dogs are a wonderful thing. But they are not for everyone. And the patient cannot be responsible for continuing training of the dog.

That simply won't work. We are dementia patients. We have a brain disease. We are not dog handlers, or trainers. Remember that before embarking on this.

A highly trained service dog can run in thousands of dollars. Well over six to eight thousand is not uncommon to pay for a fully trained service dog.

Do your homework. Work with a trainer at least in your state, or as close to you as possible. Keep constant contact with how the training is going. And get references. This is a huge thing, not to be taken lightly.

We have a dedicated page to learn about Sam and how he came into our lives.  There is where we discuss about service dogs, the in's and outs of owning one and what have you.

As always, Mp is for Support and Awareness. Not everyone can afford a service dog, or has any desire to own one. I wanted to give you an insight on this. For any lengthy discussions, please join Sam's Place, on Facebook. One of our Admins can get you added.

© Rick Phelps 2016