Thursday, May 29, 2014

Dementia diagnosis changes everything you just don't know it

I remember people asking me, "How come you remember this, or you remember that, but you forget something that happened just now?"

Or they would ask, "How is it you can talk about things you did twenty years ago, and can't remember if you ate today?"

I too remember wandering how that was all possible. How is it I can remember some calls I was on in EMS like it was yesterday, or I can tell you what Phyllis June had on the fist time we went out about thirty five years ago now???
Lauren. That's who told me how. I don't remember her last name. But she worked for the Alzheimer Association and back then in 2010 they still made house visits.
They had sat a house visit up for us two days after I had called the Alzheimer Association. And she was there.

I remember she said, "You need to change the way you to things. Today. Not tomorrow. Tomorrow's are a thing of the past. You have to do what is important to you, and spend time with those who are important."
Everything changes she said, and everything has already changed you just don't know it yet.

She could not stress that enough. Another thing she told us that night was "At all costs, you must not be around anything that causes you stress. If it does, you need to not be around it, or them. Stress in the number one killer for some patients, and they progress ten, even twenty times faster than those who keep stress under control."
To this day, if I know something is going to cause me stress, I'm not there. If I am there, we leave. If it has to do with someone around me, I know longer have that person or persons around me.

This is that important to me. "What is?" you ask. My wife. Our daughter, her husband, their kids, our nieces, my cousins, my get the drift.
What time I have, I will not let someone steal from me because of stress. I just won't.
Now to the remembering part. Lauren went on to tell us that night that I do and will remember some things for a very long time, despite of dementia.
That is because these things are and have been embedded into my brain for years. Like, some runs I was on, or where we went after our wedding, or Tia our daughters graduation.

Whatever it may be, and this will vary from person to person but they will remember things that seem so trivial to many. Yet to them, they are not.
I will never forget the day my daughter died. I will never forget the day Phyllis and I were married. I will never forget Tia having those two precsious girls we call our granddaughters.

I will never forget the times we had with our nieces, Paiger and Jade. The fun we had a Myrtle Beach, the amusement parks and zoo's over the years.
But I could not for the life of me tell you what I had to eat today, or even if I ate today. That is dementia. And there are things your loved one will hold for hopefully ever.

When someone tells me that their loved one is gone, I am tell them I am so sorry for their loss. Then they say, "No their not dead. They're just not with us anymore."
I am quick to point out only one person knows that, and HE will see that when the time comes your loved one will be done here on earth.

Until that moment, when the very last breath is out of their body, never, every think they are gone. Their soul is here. The disease may have the mind, but until the death does come, they are still your Mom...still you Dad...still your loved one.
"They don't know me anymore"....that doesn't matter. You know them. And they gave life to you. Be there for them. Never forget that. Never...

There were a no two dementia patients that are alike

Every symptom, every patient, every stage of the disease is different. Every reaction to different medications. Every way of reasoning with a patient, every way a patient reacts to situations is also different.

What I am trying to convey is that when someone asks you something like how does your loved one react to a certain medication, or how do they react to sundowners, or shadowing, all of these and every symptom for that matter is different with each patient.

For example your loved one may love to listen to music. May soothe them and give them that peaceful feeling. Others just the thought of music is and can be stressful.
They may love to just sit and look out the window, others may need to be busy all the time.
This is one of the reasons I don't go along with the seven stages of Alzheimers that the Alzheimer Association talks about. There can be seven stages, but to say your loved one is in stage four, it's just not that simple.

I can be in "stage two" this morning and be in "stage four" by this afternoon. And then stay in "stage four" for days. There is no rhyme nor reason as to what stage a person is in and how long they will in it.

The only stage you can be sure of is the final stage. That sounds a bit morbid, but it's the truth. When you hear a patient talk of a "bad day", that too can vary.
My "bad day" that I speak of has at times lasted several days. One looses track, especially the patient. One of the things that goes with this disease is the concept of time.
Yet, every doctor or neurologists I have been to constantly ask me questions that deal with time. For example, "When did this occur?", "How long did this happen?" "Can you say what time of day bothers you the most?"

And on and on. Just try to keep in mind when someone says their loved one is having issues with a certain medication, or whatever, your loved one may never have a problem with it at all.
Too many times people get wrapped up in if someone said their husband could't take Aricept or the results were not what they expected, the person thinks that their loved one can or will have the same reaction.

This is simply not the case. You have to remember, dementia no matter what type is a disease of the brain. And the chances of two people having the same level of the disease effecting their brain is virtually impossible.

You also have to look at the when each was diagnosed, why type of dementia, how much it has progressed with each patient, and what part of the brain is actually effected.
None of these variables can be diagnosed. We all know that most neurologists will say "Your loved one has dementia, probably of the Alzheimer type" or something similar to that.
Because the only way to get a 100% positive diagnosis is through an autopsy of the brain. That is a medical fact.

We are all different. The disease we have even though it is labeled as dementia, it too is different in every patient. You can't lump patients together. you can't even combined two together.
And as always, I am not an expert on dementia of any kind. I am a patient. And I feel we are the experts. Those of us who can still communicate what is going on and choose to do so....

The VA and dementia patients, imagine how difficult it is for the patients

Can you imagine being a Veteran and having dementia, having a TBI? The shambles that place is in?
Again, you never hear about the horror stories, but their there. We have had two members here that I remember that either were or a family was suffering from a TBI.
I can tell you applying for disability was a complete fiasco. Jumping through all the hoops, waiting on my money. I call it my money, cause I worked and paid into it my entire life.
I can only imagine what some veteran families have had to endure because of the VA debacle. Please keep them in your prayers.
Early detection is the key to anything. And the wait times reported for the VA have been disgraceful at best. It has been this way for centuries, and it will take decades to fix it, if it is ever fixed. So sad.

Dementia patients do not have control over their behaviors

A lot of times the family of dementia patients will tell you their loved one is lying to them. Just making things up. And sometimes they will even say the patient is doing this to intentionally aggravate them.

This is nothing more than frustration on the part of the family/caregiver. I can tell you from a patients perspective, it may look as though they are making things up.
It may seem as though they are intentionally doing things to get under your skin, but 99.9% of the time they are doing whatever it is because they indeed think it is the right thing to do.

Now, granted not every patient is the same. And I suppose some, very few, but some are doing some things that are just aggravating.
But that is no way the majority of the time. Matter of fact, like I said it would be in very few cases. When a patient says or does something reprehensible, the caregiver/family member overlooks this.

Knowing it is the disease that is making them do or say whatever. The problem lies when this acting out of verbal abuse, or physical abuse, or whatever continues to happen, day after day. Sometimes hour after hour there is no other conclusion that that the family can come up with but that they are indeed doing this just to be doing it.
We always want to be able to blame someone, or something. So, the patient takes this one sometimes. Even though as bizarre as it seems they have no control over what they are doing.

This could happen in the very beginning of the disease even. There is no way to monitor or to know what part of the brain is being effected by the disease.
So, if it is the frontal lobe where your short term memory is stored, then the patient will do and act out the same, over and over. Or, you may never see this. Ever.
Like I said, no two patients are alike. But when you blame the patient for what is going on or being said, you are in fact just wanting someone to blame and it has to be them.

Who else would it be? It's not right, but this happens, mostly out of frustration. This is when you better have a plan in place, for as bad as it is it will get worse.
And there is no telling when or how fast it will get worse. Mostly I think it's because the family or caregiver just is at their wits end. Who wouldn't be?

It's when you start blaming the person for everything, and taking it out on them the real problems arise. Sometimes escalates to violence even.

Never let that get that far out of hand. If you have, you need help. And not just talking need to think this may be too much for you. It happens to the best of caregivers.
It just does.

Tuesday, May 27, 2014

Denial should be a symptom of dementia, no one is immune

Sometimes, even with this horrible disease we call dementia, there is something going on with the patient, the caregiver, the family, and friends, that is indeed far worse than the disease itself.

Denial. I would guess most people who are diagnosed deal with some form of denial for at least a period of time. As would their family, loved ones, etc.
It's when this denial thing continues. People go on with their lives as if nothing has changed, and worse yet, nothing will change
One of the most important things you will ever hear about this disease is that everything will change. Most hear this and it goes in one ear and out the other.
Simply because they are still reeling from the diagnosis. Whether it be Alzheimer's, Lewy Body, Early On-Set, Frontal Lobe, Vascular...or any other type of dementia, they never really hear, "Everything will change".

And the amusing part about denial is that, to some. the more prominent you are, the less things will change. They don't realize or even want to entertain the idea that things will change.

Not for them it won't. I remember when Pat Summit was diagnosed a couple of years ago now. The first TV interview she did was to say that "I have been recently diagnosed with dementia, Early On-Set Alzheimer's, but I can tell you that nothing is going to change".

She went on to say she will continue as head basketball coach for one of the winningest schools in girls basketball history. Even though she made such an absurd remark, no one that I knew was challenging her on it.
Matter of fact within days she was the new poster girl for the Alzheimer Association. The same woman who comes on national TV and states that she has dementia, but nothing is going to change.

Things of course did change. Less then a year later she retired from being head coach. She wrote a book on the same disease she was denying just a few months prior.
The real problem here is this is not new to the world of dementia. She is but a long list of prominent people who's life would not change on account of dementia.
Glenn Campbell, Ronald Reagan, Peter Falk, Charlton Heston, Rita Hayworth, Sergent Shriver...and on and on.

You see, dementia doesn't care who you are, how prominent you are, how much money you have. It doesn't matter. The only thing that will be effected is how this person is cared for.

You will find that the "common person" who has dementia will face a whole host of struggles. From affording the medication they desperately need to getting the daily care that is also needed.

But, the other side is much different. You see, the Glenn Campbell's of the world, or the Sergeant Shrivers, the Ronald Reagan's....these people don't know dementia the way we do.

They don't and they never will. They don't struggle with finances, they don't worry about placement and who's going to pay for it, they don't worry about the medications and how they are going to afford them.

They are prominent people. And my hat goes off to them. They have made it in life. They have achieved the American Dream. But the problem here is dementia doesn't know it, dementia doesn't care.

There is a terrible stigma that goes along with this disease. And it very bad in the affluent people who do get a diagnosis of dementia. They for whatever reason think that they can whether the storm that is coming.

If you look, do some research, you will be amazed to find that many of these patients are put in facilities 80 to 90 percent of the time. Regardless of their standing in life, their wealth, their ties to important people. Why?

Because of denial. From the very beginning these people don't think that something like dementia can or will slow them down. They think they are immune to what is coming.

This could not be further from the truth. Late last year Glenn Campbell was placed in a facility, and the family said they would explain why at a later date.
I can tell you why now. They didn't realize what was coming. He did this "farewell tour" for the fans, when he should have been home spending time with his loved ones.
Be aware of what precious time you have, and make use of it. If going on a "farewell tour" is or was more important than spending time with his family, he or they accomplished what they set out to do.

My guess is right now they would give anything to have some of those days back he was out touring the countryside. Again...this is nothing more than a form of denial. Them thinking they had the resources and things in place to care for him.

I would assume the financial part is covered. But where is he now? Is he doing better because of his status? No. Even though this multi million gold record selling entertainer has made it in life, he now sits in a nursing facility.

Where aids are changing his bed pan, feeding him, turning him so he don't get bed sores and on and on.
What I am trying to say here is, please, for your sake, as a caregiver and the sake of the patient, don't let denial determine what happens with your loved one.
Denial solves nothing. It helps no one. This disease will progress whether you deny it or embrace it. Denial should be considered a symptom of dementia. Not just something that happens.

And by embracing it I don't mean that you have to like what is happening, but you do need to understand what is happening. You do need to realize that for every day, every hour, every minute you spend in denial...that is time you will never, ever get back.

Do you want to spend you last few months out on tour, playing to the fans? Or do you want to understand what is happening, know that you time is limited at best, and do what you can, "While You Still Can"???

I understand why denial happens with this disease, What I don't understand is why people let it continue. This disease will progress whether you accept it or deny it.
That you can be sure of. And by accepting it, that doesn't mean you have given up or lost in anyway, What it means is you understand what is happening, you understand what is coming, and most important you have made plans in place for the future.

Denial. It has no place in dealing with dementia. But, it is one of the biggest problems that families face today. Don't get caught up in the denial thing.
You will never forgive yourself in the end. Never...

Tuesday, May 20, 2014

Do you think you or a facility can Best care for a late stage dementia patient?

Let's take a poll

Who believes they can take care of their loved one in the later stages, in their own home, better than a certified facility?
A facility that has staff there 24/7, administering medication, bathing, feeding, offers hair care, massages, has tv's for entertainment everywhere.

Has a day room where activities are done. Has a outside garden area. Has an activities coordinator who is in charge of doing simple things like crafts and such.

Has trained medical staff on premises, RN's, LPN's, Dietitians, Physical Therapist, has a doctor that comes to the facility at least once a week and see's the patients.
They also have a direct line to the hospital, doctor's office and if an emergency arises they simply call 911 and are capable with dealing with the situation until help arrives.
They have fire suppression, they are a secured area where as the chances of your loved one wandering is not eliminated 100% but it is less likely.

They have people come in with therapy dogs. Some even have a cat or dog for a mascot.
Who thinks that a facility that offers all these things and hundreds of other things is better than let's say a 110lb., 74 year old wife, taking care of her 80 year old, 230lb., 6 foot husband?

He is diabetic and has to eat every four hours or his blood sugar will drop and you have to call 911.

He can no longer walk. He can no longer communicate. He eats very little. He gets up in the middle of the night two, sometimes three times a night.
And many nights he gets up and stays up. He soils his bed everyday, at least once. He refuses to shower, bath, or even have help sponge bathing.

He is constantly turning on the stove to the point you had to make it so he cannot turn it on. Removing the knobs, and putting them back on when you fix anything.
He doesn't have any clue who you are, but then he wouldn't know any of the staff at the facility either. No one comes to visit, course then, they wouldn't at a facility either.

There is a constant fear of him falling, there are trip hazards such as throw rugs all over the house. The bedrooms are all upstairs, so getting him up and down the stairs takes time and is very dangerous to him and the wife.
The wife had to have back surgery recently because of two ruptured discs in her back from trying her best to get him in and out of bed, helping him down the steps, and into the shower and out.

The wife has high blood pressure from the stress. She has had one mild stroke which is just a sign that a major one could be coming if she doesn't eliminate some stress in her life.

The husband constantly see's things that aren't there. He is verbally abusive and has on one occasion tried to strike the wife and one of the adult children who stop by once a month, maybe.

Which of these two scenarios do you think is better for the patient? Not the caregiver, but the patient?

Now, which of these two do you think is better for the caregiver? Not the patient?
Take the personal feelings out of the equation and it there is only one rational thing to do here. If you do what is right, in the end you will thank yourself...and your loved one will be cared for properly.

No matter what others in the family think or say...

Monday, May 19, 2014

Words of Wisdom

Never approach a dementia patient from the rear. Many have vision problems and their peripherial vision may not be very good. They have a very hard time seeing anyone approaching from behind or even the side of them.

Always get to their eye level. If they are sitting, sit with them. Don't have it so they have to look up to see you when talking to them.

Don't use compound questions. Keep what you are saying simple and one word answers for them. Remember when talking with a patient, you may be in the second or third thought, and they are still working on what you said in the beginning.
Try to not say, "You remember don't you" or "Remember when..." Chances are they don't and they won't.

They may tell you they do. I tell people all the time I know what they are talking about and don't have a clue.

Never raise your voice with a dementia patient. If you keep your voice at a low level, chances are that will take the stress level down for them as well.
You don't have to have your loved one being entertained every minute of every day. Sometimes all they want to do may be sit and stare out the window, or sit and just relax.

A lot of times I do this to try to gather my thoughts. It is for me very relaxing. I don't need to be doing something constantly.

Try to have their food on a red plate. You will be surprised but this indeed does work. You will notice they will eat better, and more. The thinking is they can see the food better on a red plate.

And most important, know that you are going to make mistakes. It's how you deal with those mistakes as a caregiver that matter. No one is perfect nor ever will be when it comes to this thing we call caregiving.

You can't stay a head of everything or surmise what may happen next. Have a plan, then have another. Chances are your first plan may not work.
Do this for everything you attempt to do with the patient. You never know when total chaos is going to take over.

Pick your battles. You won't win many.
Are they safe?
Are they pain free?
Are they content?
If you answer yes

Diagnosis is terminal, but not the end

I think one of the most important things to know about dementia is that yes, it is a terminal, progressing disease. But, especially in the beginning, there are many things your loved one will still be able to do.

I have lost a lot of my cognitive ability, but you have to realize I was diagnosed four years ago and I had problems for five or six years before that.
At the time of diagnosis they say you can have this disease for up to ten years prior. So in theory I am into this disease by ten years, perhaps more.

My point is newly diagnosed patients and their families here one thing and one thing only. Terminal.
We are all terminal. Sometimes I think I have a leg up on others, because as bad as it is, I know my time is limited.

You will of course see a change in your loved one, but this is not going to happen over night. And it will be subtle at first. There will be mistakes made by the patient, you probably seen these before the diagnosis.

But at the time of diagnosis this is not the end. This sadly is never explained to newly diagnosed patients. Not much at all is explained to the families or the patients for that matter.

Has my cognitive ability changed in the last few years? Of course. But everyone will progress differently. No one is going to be elated when getting a diagnosis of dementia.

But it's not the death sentence it is portrayed to be, or at least its not like you have less than a year to live. Patients many times out live their loved ones with this disease.
I am not trying to sugar coat a diagnosis at all. But, make the best of it. What choice do you have.

I made my mind up I was going to make a difference, make a change in the way people don't talk about dementia.

For all too long this disease is like cancer in the 60's. One couldn't even say the "C" word. That helps no one. You will always have those who are in denial.
Only they can change that. But make changes in your lives immediately. Do what is important. Spend time with the person. Take vacations, you need to do the things you have always talked about.

Because one day, and no one knows when that day will come, but one day your loved one will simply not be able to do what they can now.
I can no longer go on any overnight stays out of town. I just can't do it. We used to fly all over, for speaking engagements and such. No more. what you can, while you can. There is a whole lot to the saying "While I Still Can..."

Saturday, May 17, 2014


Someone was asking about he's doing. Sam is my faithful companion. He a soon to be two year old German Shepherd who was trained to help me.

I tell people all the time, Sam's biggest problem is me. I have a dementia. And there are things that I let him get away with, that I shouldn't.

I sometimes let people pet him when we are out. I only do this cause time after time after time of telling people, "No, you can't pet him, he's working" it gets really, really old.

When we first got Sam, and any service dog for that matter, you are told that no one is allowed to pet them. This takes the dogs attention off of the handler.
Makes sense. But I can tell you without a doubt this does not take Sam's attention away from me.

Rarely do I allow someone to pet him when we are out, but on those rare occasions when I get asked twenty times in ten minutes I have given in.
He's a dog. He loves the attention. But make no mistake he is always facing me, never takes his eyes off of me, even when someone is petting him.
Sam does for me what no medication has ever done. He takes my anxiety level which used to be around a 12, down to a 3 or 4.

Now that isn't to say that things aren't getting worse for me. He can't slow the progression, and he can't help with the symptoms which are getting more frequent and more severe.

But, he is by my side 24/7. We are buddies. I talk to him as I would any other human being. I cannot tell you what comfort this dog has brought to me.

He has indeed changed my life. I can't remember him not being here. By law Sam is allowed anywhere I go. Anywhere. With the exception of an operating room, he is allowed in any ER, on any commercial airline, in restaurants, stores, etc.

We are never separated. When he has his vest on he knows it's work time. When he doesn't have it on he is for sure a typical dog. He is our pet. But even then, here at the house he always is by my side.

If I get up from the dinning room table, to go to another room, he does too. If I go to the garage for something, so does he. We are never separated for any reason.
He loves to play with the kids, and our other dog, but even then he never gets out of his line of sight with me. He can be running around at the campgrounds playing and if he see's me get up for any reason, he's right there, every time without fail.

I go in the camper, so does he. I go to the truck for something, so does he. It's how he was trained.

A service dog is not for everyone. You have to realize that the dog will be with the patient everywhere and at all times. Sometimes patients are not capable of having a dog with them 24.7.
You can't un-train Sam. I wouldn't want to. He is trained in what they call passive protection. In other words he's not a police dog. But he does sense when there is something wrong.

He can tell it in my voice, my demeanor, and actions. If I am confronted for example, he will stand between that person and I. He will make sure that the situation remains calm.

If someone were to make a threatening move toward me, or threaten some sort of violence it would be a very bad mistake on their part. Sam will defuse the situation.
He is trained to eliminate the threat. In other words he will not allow any harm to come to me. That is his job, along with many other things.
When I am here alone, and if I use the stove. he lays right in front of it. If I walk out of the kitchen for any reason he will carry on. Letting me know the stove is on and I am not in the kitchen.

To some this seems unbelievable, but he was trained to do this. It's second nature to him. If I forget my patches at night, he will put his front paws on my shoulder and lick my arm...letting me know "Hey, you didn't put your patch on"...
Again, he was trained to do this. It was amazing the first few times he did this, now its like "Alright already"....its like having a mother hen.

I am so thankful as Phyllis June is that Sam came into our lives. It was and is a perfect fit. He has allowed me freedom. He has changed my life.
And for that we will be forever grateful...

Thursday, May 15, 2014


Scared. That's one of the symptoms that I deal with daily, and chances are your loved one does too.

It's a constant fear. Many times people will ask me, "What are you afraid of"?
My answer is always the same. Everything. I am mostly fearful of the unknown. What will happen? When will it happen? When I have a bad day, will it last, will it never get better?

When will I not know my wife's name? What day will it be that I know longer recognize her?

Will it be tomorrow? Next week, next month? Will I awake one day and not know where I am, or any of my surroundings?
I sometimes sit outside a store and then just drive away, fearing what will happen in there. Will I forget why I am in there? Will I not know what to say when someone comes up to me?
Will my debit card work? Will I remember the PIN number? Do I have any money in there?

This is just a mere glimpse of what a patient fears. And this hasn't scratched the surface.
It's a constant thing thats with your loved one always. Some think their loved one is afraid at night, or when it storms, or when someone stops by they don't recognize.
When in fact they are afraid to get up from the very chair they are sitting in because once they do someone will ask them what they are doing, and chances are by then, they won't know.

I know we don't talk of religion here. But I want to say, I cannot phantom going through this without my faith. I was never a real religious person. I do believe and I consider myself a Christian.

But without my faith, I can tell you there isn't a medication that would help me. I know and believe there is a higher power. And I also believe there is a master plan for all of this.

But I would be lying if I said with my faith, I have no fear. I have fear, I have anxiety, but it's not because of my lack of faith, its because of the horrible disease is taking a little bit of me day after day.

So when you love one is sitting there, and they look as if they have seen a ghost. Chances are they have. What you are seeing is the fear they have.
The fear this disease does to you. The fear you cannot get away from. Comfort them. Tell them you are there and aways will be.

Personally I don't like to hear "Everything will be alright". it won't be alright, and there is nothing about this disease that is alright.

Making peace with this is the hardest thing I ever did. But it was the right thing. Do I wish this never happened? Of course. But I know, there is a reason.
And one day I will be told..."You did good my Son. You did good"...

Ignorance to the disease

I often say there are many ignorant people. When I say this, what I mean is they are not ignorant per say, they are ignorant to the disease.

On top of that when you deal with these types of people, they are all experts. Most of them never spent an hour caring for a dementia patient let alone a day or more.
Yet, they have all the answers. Could be a family member, someone you friends with, or just someone you casually talk to.

My hope is they mean well. But the reality is what comes out of their mouth most times is down right hurtful.

I personally don't have time for these people. I wish them no ill will. I just don't have the time nor inclination to be around negative people.

There are people in the world who are just experts on everything. Jack of all trades, master of none as the saying goes.

In day to day living, this is fine. The problem is when they try to tell you, a caregiver what to do, how to do it, when to do it, they are indeed being ignorant.
To the fact that they have no idea what it takes to be a caregiver. They stop by once in a blue moon, tell you everything you are doing wrong, then go about their business making someone else's life miserable.

The best thing to do for you and your love one is to disassociat yourself with these people.

If they are on Facebook, unfriend them. If they in your day to day living, try to avoid them. I am not saying cut one of your siblings out of your life completely.
What I mean is tell these people there are boundaries with your relationship now. They are welcome to visit as much as they want, but they do need to keep their idea's, innuendo's, and downgrading comments to themselves.

There is nothing more damaging to someone who is doing their absolute best that they can and have some wanna be caregiver stop by, or call and tell you what a lousy job you are doing.

You don't need it, and like I said neither does the patient. Sooner or later with all the negativity going around they may even convince you that what you are doing is wrong.

You beat a dog long enough, and he will learn to enjoy it. You downgrade a person long enough, and they will be convinced in time what they are doing is wrong.
Like I said, I don't associate with these types of people. And it doesn't matter to me if they are family or friends.

Phyllis June and I's sanity is much more important than listening to someone who has not earthly idea of what they are talking about.

I have had three businesses in my lifetime. All three were successful. But it wasn't because I listened to the nay sayers. It was because I took my idea and kept on track.
There are always people who will try to make your life as miserable as theirs. Don't allow this. Most importantly, don't allow a wanna be caregiver tell you what you are doing is wrong or how they would do it.

They don't have a clue. And in time they can bring you to resent what you are doing. We all know this job of caregiving is the hardest thing you will ever do.
It's not like all other caregivers. Caring for a dementia patient is a whole new ball game. If the people around you don't get it...ignore them. Cut the ties.

Again I am not saying to banish anyone from you life completely, but if you set these people down and tell them how it is, how its going to be from now on, it will be like someone has taken a huge weight off your shoulders.

Don't let them bring more stress into your life than you have now. I, the patient depend on you too much to let some know it all detract you from the job at hand.
No matter what the situation, if you do what you feel is right for your loved one, then answer to no one. Every situation and every patient is different.

There is no handbook on how to care for a dementia patient. If you have one, throw it away. Because no one can tell you how to do your job as a caregiver, who doesn't know the situation.

First Do No Harm

First Do No Harm. Everyone knows this is an oath every doctor takes. And most if not all live by this.
Or do they? I have known many physicians who will prescribe medications, pain pill to be exact to the point where the patient wasn't but now is addicted.
We had a family member this happened to, and Im sure you either know someone this has happened to or read about it.
But...Do No Harm. That certainly can apply to many things. One not at least being not giving any information when being diagnosed with dementia.
This has long been a pet peeve of mine. Both Phyllis June and I being in EMS for over twenty years plus, her going on twenty five now, we know what questions to ask, what to say, etc when it comes to going to our doctor.
But when I met with the very first neurologists, who gave me my diagnosis, he in my opinion did not abide by the First Do No Harm oath.
I suspect many of you here have gone through the very same thing. The tragic thing here is it is so unavoidable. I don't understand how one can come out of a neurologists office after recieveing a diagnosis of dementia and know less than when they went in.
This a huge problem, that could be solved so easily, but isn't. The same thing is going on today, as it was when I was diagnosed some four years ago, and has been going on for decades.
Seventeen Minutes. That's the title of the first chapter of my book, "While I Still Can..."
It took exactly seventeen minutes from beginning to end to get my diagnosis. Now I am smart enough to realize that these specialists have many other patients to see.
I am one of many that he seen that day. But we had no answers, no information on where to get answers, and were told "You have EOAD/MCI. Early On-Set Alzheimers Disease and Mild Cognitive Impairment. I am prescribing Exelon patches, put one on every twenty four hours. This is the best medication there is to date. Come back and see me in six months."
Now it takes a whole lot to upset me. Matter of fact I was relieved I finally had a diagnosis, but yet we were given no information.
What I learned in the day ahead still boggles my mind. This is not an unusual circumstance, it is the norm. Getting a terminal diagnosis of a disease that will slowly progress and there is no cure, and no slowing the progress.
Why is this like this? How could they not give you answers? I have learned over the past several years that they don't have any answers. Those of you who go to the doctor for answers, just like we did, will or were sadly disappointed.
Education. That is the key to everything in life. If you are not educated on something, you are in fact at a stand still.
Why is there not handouts to give to patients? Why is there not local support group numbers given to you right there and then?
If a site like Memory People was available to us then, or to you for that matter can you imagine what a difference that would have made. That could make?
I am not being disrespectful to the doctors I have seen over the years. But the fact is only one, one out of at least six have given us any answers. The others, they just ask questions and write a lot.
This needs to be changed. There needs to be a sources that are given to you at the time of your diagnosis. It could be the number to your local Alzheimer Association Chapter. It could be to local support groups.
It could be to Memory People. We don't have the corner market on dementia here. I have long said there is plenty of this disease to go around.
We as a group have tried to get the word out about Memory People the best we can over the years. But we still have work to do. I would love to see a flyer about us and what we do in every Neurologists office across the land.
Not for the notoriety, but because it's the right thing to do. The problem is they look at us as a social networking site on Facebook. Little do they know we do more by accident then most of them do on purpose.
First Do No Harm...many of them do just the opposite simply because they won't take the time to give you information about dementia. It is much easier and more cost effective to diagnose and go on to the next patient in the other room.
It's sad, but this happens everyday. To tens of thousands of patients. And it shouldn't happen to one.
Not one.
Unlike · 

Wednesday, May 14, 2014

Wandering, a patients percpective

First of all I need to say that the Alzheimer Association has given us more help than anyone in the beginning of this journey. I have been invited to speak at many of their symposiums in the past and we have had a working relationship.

We have gone to Washington DC with the Alzheimer Association, I have spoken at our state capitol for the Alzheimer Association. They are a very good organization.
We would have gotten by, but what we learned from the care specialists that came to our home, was invaluable. Mostly for her to explain what I had been saying for a very long time.

Sometimes it takes someone of "authority" or "expertise" before some people will start listening. Sometimes people never will.
That being said, I have had a difference of opinion with the Alzheimer Association along the way, which again is normal.
Them mostly being advocates of the disease, and me being an actual patient. Sometimes what advocates say and what a patient actually goes through are different as night and day.

This is posted on their site under "Tips To Prevent Wandering" section:
"If night wandering is a problem, Make sure the person has restricted fluids two hours before bedtime and has gone to the bathroom just before bed. Also, use night lights throughout the home."

Now lets just look at this rationally. Does anyone who cares for someone with dementia really believe that if restrict them from fluids, and have them go to the bathroom this will somehow prevent wandering?
And if you have night lights throughout your home, this also will solve the wandering problem?

Here's what is actually going on and what can be done to stop wandering.
When a patient wanders, most times they are looking for something. Be it the home they were raised in, could be their car, could be there wanting to watch tv...could be any number of things.

Patients don't get up out of bed and begin to wander cause they have to go to the bathroom. They just don't. There are tens of thousands of patients who wander many of them do you suppose are found in the bathroom?
Second, there is no 100% way to ensure that your loved one will not wander. There isn't. It does not have to be 2:00am for a patient to wander.

I have found myself wandering in the middle of Walmart in the afternoon with my wife. Wandering consists of just walking and not having any specific place in mind.
Thus, by this definition it is wandering. Those who are in places to make claims about wandering, need to do so in a professional manner.

There are consequences to some statements. And if anyone believes they can take away their loved ones juice or milk two hours before their bedtime and the wandering problem is solved, well then this actually creates another set of problems.
There is no night light that is going to keep your loved one from wandering. There just isn't. When a patient gets up in the middle of the night they are not going to see a night light and know they should be back in bed.

This is border line absurd to think this. Let me explain what goes on with me and it may help you to understand the wandering thing.

Fear. With this disease and for whatever reason there is a constant state of fear I go through. And that fear, again for whatever reason intensifies at night.
When I wake up from a horrible nightmare the first thing I have to do is get up and get away from the situation. And in this case is our bed. essence I wander. I am still with it enough to where I don't go out the door and start walking aimlessly into the night. But many patients are.
You have to understand these people may not even know they are outside, let alone know where they are going or what they are doing.

Patients have gotten behind the wheel of a car in some cases and drove hundreds of miles...and this is just another form of wandering.

You will never stop it. The best you can do is be prepared for it. Take a picture of your loved one with your cell every morning. That way you will have an up to date photo of what they look like.

Do not bolt the doors shut to where if there is a fire, someone could very well be trapped. You have to remember, if an emergency arises and you for what ever reason are incapacitated, your loved one will never get out a door with three or four locks on it.

Have a plan. Disable the car if you have to. Put an alarm on their bed to where if they get out of bed an alarm sounds. And it has to be an alarm that will wake the dead.
They call these mattress alarms. They work when any weight is shifted off of the mattress. Install a cheap motion camera. You can get one of these for around $70.
We have three. One inside, two outside. This way if and when I get to the stage that I do wander off, there well be a video of what door I went out, and where I went when I got outside.

We have a camera in the front of the house as well as in the back of our house. Some say this is overdoing it a bit. I say it's called having a plan.
If you wait till your loved one wanders the very first time, this could be the time something horrible happens to them.

This is not rocket science. You would and have done everything you can to keep your children where you know where they are and what they are doing 24/7.
This is what you have to do with the patient. You have to do this. It's not a matter of if your loved one will wander, it's a matter of when they will.

Taking there water away two hours before bed, and turning on a night light seems to simple to be true. That's because it is to simple to be true.

Take it from a patient, or take it from some organization that means well, but has really dropped the ball on this one...sadly.

Tuesday, May 13, 2014

Take Yourself Out of the Equation

Take yourself out of the equation. That's what is needed when it comes time to make decisions about your loved ones.
Can you do this? Yes. Will you do this? Probably not. Anyone will tell you what is coming when dealing with dementia.
All you need do is read our posts here and you will see the horrible stories that indeed goes with having dementia.
The stories of what the patients go through. The stories of how the family/caregiver tries to cope.
I always say there are three things that matter. Three simple things. If these things are met, you have and are doing the best that you can do.
Are they safe?
Are they pain free?
Are they content?
If you can answer yes to these three questions then you are doing all you possible do.
Are they safe. Meaning, are the surroundings they are in, can they hurt themselves or others around them? Are they in a place where they actually feel safe, and even if they don't, make sure they are.
Are they pain free? Now a days no one and I mean no one should be in pain. There are pain clinics, doctor's and drugs that prevent this. Use them all. If you have any inkling that your loved one is in pain, make sure you tell the doctor.
No one knows them better than you. Always err on the side of caution when it comes to pain. Most likely your loved one will not be able to communicate about their pain verbally. So stay on top of this.
Are they content. This could be as simple as your loved one sitting in their chair and staring out the window. All to many times caregivers think their loved ones need to be entertained at all times.
As a patient, I don't do crossword puzzles, I don't do mind games, I don't do things that challenge my brain. To me, that's just adding fuel to the fire.
For whatever reason many have come to the conclusion that if you exercise the brain, it will be better for you. This is probably right, in the perfect world.
The time for brain exercises has long been past when they are diagnosed with dementia. Dementia remember is a disease of the brain. By having your loved one do brain exercises you are in fact making them do things they simply no longer can do.
That being said, some patients love to do puzzles, or brain teasers. But the fact is, you should never make or encourage your loved one to do these things.
It would be like having me read a book now. Or having me follow a set of written directions for some reason. The fact is, I can't and all this is going to do is cause me stress.
If your loved one seems content, and to you are doing nothing, leave them alone. Sometimes doing nothing is just what they need. I don't need and don't want to be entertained.
In the end, if you take yourself out of the equation, and do what is right for your loved one you will always win. This is not going to change what this disease does, it's not going to slow the progression one bit.
But in the end if you do what is best for them, you will save yourself a lot of heartache in the long run.
"Momma never wanted to be in a nursing home"....well, "Momma never wanted to not be able to go the bathroom alone either" or "Momma never knew she would forget her kids and grandkids names".
There are a whole list of things Momma would never want. You have to go with what is best for her. Not what is best for you, or what she may have's what she needs now to continue to have the most dignified life she can.
Do what is right. Not what is popular. If that means placing your loved one and your are concerned about what others will say....don't be. Tell you brother, your sisters, your cousins, your friends you are doing what is best for your loved one.
Not what is popular, or what others may deem to be the right thing. Take yourself and your personal feelings out of the equation and do what is right for the patient.
You will never go wrong by doing this. Never...

Friday, May 9, 2014

False Hope

There are zillions of things that some proclaim to cause or add to the issues of dementia.

I personally think the jury is out on this. The one thing you can be sure of is there is nothing that will slow the progression, and there is no cure.

Hard to hear? You bet. But it is the truth. There are many products that come down the road, the most prominant being coconut oil that many people claim slows the symptoms or even the progression.

It doesn't. Nothing does. Wishful thinking? I suppose. Does it hurt anything? Not really.

Just so you know if you see a marked difference in your loved and you assume it because of the coconut oil, it isn't.

What is happening here is you see what you want to see. And that's fine. If anyone here thinks coconut is helping their loved one, I say go for it.
Reality is if coconut did what so many claim it does, you wouldn't find it at your local grocery store for a few bucks a jar.

There would be and still may be such a huge mark up on coconut oil, that not many would be able to afford it.

That is, if and this is the kicker, if it proved to do what many says it does. It doesn't. Like I said, but if you give it to your loved one and it seems as though its doing something, more power to you.

We just won't allow any posts here that coconut oil will and does slow the progression. This is what we refer to as false hope. Everyone needs hope, but when you put your faith in a substance that simply doesn't do what some say, that again is false hope.

There isn't too many things that will hurt you or set your loved one back. Anything in moderation can't hurt anyone.

If your going through a jar of coconut oil a week, I'd say that's a bit much. It's oil, by the vey nature of its name, it will clog an artery or two if used constantly.
And just so you know, you most certainly can use aluminum pans to cook with. They have nothing to do with causing dementia. Nothing.

This is something else you will see or read especially on the internet. But it just ain't so...

Just wanted to clarify what coconut oil, fish oil, and some other natural ingredients will and will not do. If your giving it to your loved to slow the progression, you are throwing good money after bad.

There is nothing that will slow the progression. There is only a handful of medications that can be prescribed that "may" lesson the symptoms. That is all.
Nothing to date will slow the progression, let alone cure dementia...

Wednesday, May 7, 2014

Caregivers need breaks, but how?

A caregiver needs to take time for themselves. How many times have we heard this?
The problem here it feasible? Can the caregiver get that time alone? Who are you going to get to sit with your loved one?

You will find it can't just be anyone. And if and when you find that person who will sit with them while you are out for a couple of hours, your loved one may not want anything to do with them.

This is an ever-changing problem. You get someone who knows your loved one, knows about the situation, yet you can't leave them there knowing there will be problems.

There's problems when your there, let alone someone new coming in. And to them, the patient even if its a son or daughter it may be some stranger to the patient.

But yet we say, and I say all the time you the caregiver must have time for yourself. It's one of those things that's easy to say, yet not so easy to make happen.

I wish there was an answer to this. I'm in what I would consider the mid-stage of this disease. I can still be left alone, and I prefer to be left alone as a matter of fact.

But for those patients who have to have someone there 24/7, and for the caregiver to try to get away for just a couple of hours it is a daunting task to say the least.

There are just so many issues that go with caregiving. The stress, the sleepless nights, the "shadowing", sundowners, the constant repeating of the patient over and over.

Them perhaps knowing you one minute and not knowing you the next. It is a roller coaster ride of emotions that can drive anyone to their limits.

Everyone has a breaking point. And one must take care of themselves. It is no wonder many times the caregiver passes before the patient.

This disease truly does effect everyone in the family. At times when the family should be closer, this disease puts a wedge between them because no one can agree what is best for the patient.

I am so grateful for the caregivers. Every patient is. Even if they can no longer show it. Do what is right for them. What they need. Take yourself out of the equation, your personal emotions and some decisions will be much easier to make.

Please try to take care of yourself. When a caregiver goes down from sickness, fatigue, or stress, the patient suffers as well. It is a double edged sword.

Thank each and everyone of you for the sacrifices you make daily for us...the patient. You are truly hero's. There is a special place in heaven for each of you.

Monday, May 5, 2014

Anything associated with the brain can have an effect on dementia patients

What changes can you expect in a dementia patient? Many people ask this. Why their loved one is doing or saying the things they are.

The rule of thumb for me is anything that is associated with the brain, i.e.: breathing, walking, talking, eating, swallowing, standing, sleeping, reading, and on and on...all these things and many more can be effected by dementia.

Basically, anything. Some see the symptoms more often in their loved ones, others they are subtle. This is because of where the disease is in the brain, how much of the brain has been effected and how long they have had dementia.

When a person is first diagnosed it is said that they most generally have had the disease for at up to ten years before the diagnosis.
I truly believe this. I also know the number of years vary from one patient to another. Just as the symptoms do.

You may have a day when your loved one simply can't do anything. Then the next or later on that very day they act is if nothing has changed.

Just know this, no doctor can pinpoint when this disease started. They can't tell you for sure what to expect or when to expect it. That's because of the unknown.
I can tell that the disease has progressed in the last few months which is easy for me to tell. I know what I want to say, but can't think of the word to use even if I am looking right at the thing or person I am talking about or to.

Also the thing about not recognizing is very difficult. Whatever it is I am looking for can be right in front of me and my brain doesn't register that what I am seeing is indeed what I want.

One learns to live with these things. Adapt if you will. What happens is all the symptoms get worse, and new symptoms occur and one just start to shut down mentally and physically.

It is indeed mentally and physically draining dealing with this disease everyday, every hour, every minute. And then you throw on top of that what the caregiver must deal with you indeed have a recipe for disaster

Saturday, May 3, 2014

Diagnosis is terminal, but you can still live many years to the fullest

Something that goes on with a diagnosis of dementia that I believe needs to be changed is that no one tells you that this is not the end.

Least wise, not right now. This disease is terminal. They will tell you that. But what they won't or usually don't tell you is that the patient can and should have many years of life yet to live.

I remember when I was diagnosed, there were so many long faces around here it looked like some sort of horse convention. The news of having this disease is devastating.

There is no doubt that it is. However, I can tell you that in my case I still laugh, I still do things that I could before and I still contribute to society.

Sometimes in more ways than I ever would have if not for dementia. We tend to think of this disease in the beginning just in reverse.

Granted in the mid and final stages of this disease every patient must endure sometimes unthinkable things. And that of course includes the caregiver/family member.

But till then, and these times could be years off, live life at it's fullest. The very most important thing you can do in the beginning is change your priorities.
Do things together. If you already to this, do more of it. Slowly but surly this disease will rob the patient of everything. But till that time, there are so many things one can still do.

No one will ever rejoice at a diagnosis of dementia, but I can tell you for me it was like a weight had been lifted off my shoulders.

I knew something was wrong. We all did. And finally I got an answer to all the things I was going through.

We made adjustments in our lifestyle which everyone has to do. Our spending habits were changed drastically. We went from four incomes to two overnight.
My wife and I had always worked two jobs. But when I had to retire, everything was cut in half, except the bills. They keep coming and more are added to them.
The meds, the doctor appointments, the things needed to adjust to the new lifestyle all costs money.

But know this, in the beginning, that is not the end. You must be there for your loved one during this trying time. But you must also somehow balance what you do for them just the same.

Don't let them get too dependent on you. The time for that will come soon enough.
Statistics show that at the time of diagnosis of dementia, most patients have had this disease for up to ten years. It didn't happen over night and it's not going to disable your loved one over night either.

There will be good times to be enjoyed by all. They may be few and far between, but that can also depend on your outlook with dementia.

This disease can and will devastate you physically and financially. Don't give in to it in the beginning. There will be plenty of time for that down the road.

Ask anyone who has been battling this disease for any length of time. You can carry on, especially in the beginning. Don't let anyone tell you different.

We are all terminal. Every last one of us. No one is getting out of this alive. You can be sure of that. Every time I was told I was terminal, I said "So are you"...and we are.

I know longer recognize objects that I see

Years ago, while working EMS I hurt my left forearm. I did have it looked at and they decided it was nothing more than a pulled muscle.

I probably should have followed up with a specialist, it has given me problems since. I have had to wear an arm band on it for the last four years for support.
I thought then and I think now I have a torn ligament.

About three weeks ago, I was looking for the arm band I wear. I hadn't had it on for few days but my arm was given me fits so I knew I needed to get it back on.
I searched this house from top to bottom. I looked in every drawer, every cubby hole, every closet, I checked the garage, the camper, the truck, the car.

In essence, I looked everywhere and it was no where to be found. So I knew I would just have to get another one.

This morning, I was getting Phyllis June's pager for her as she has to run squad today. It's always kept in the same place atop a corner stand that we have in the dinning room.

When I got her pager, low and behold, there was arm band. Sitting right in front of it. Exactly where I put it every time I take it off.
It had been there all this time. I have no doubt seen it, but my brain didn't recognize it as what I was looking for, for whatever reason.

I have talked about this many times. Patients no longer being able to recognize things. Some would think this is nothing more than an aggravation and they would be right.
But, it can be dangerous. Say I was looking for bandages cause one of the kids got hurt here. Or say I needed to turn the water off to the house for whatever reason.
When you can't recognize items that you are looking for and they are right in front of you, it's not only very aggravating, but in some cases it can lead to more serious things.

Remember, your loved one may be looking at something or for something and not be able to see the item, be it an object or person for that matter.
Just food for thought. I have my arm band on now. But this will no doubt happen again.

It's the disease, it's always the disease...

Thursday, May 1, 2014

Nursing homes and staff ratios. You must watch your loved ones

First of all I want everyone to know what I am about to post is not intended to be a slam on anyone in the healthcare field.
That being said. YOU have to know this disease. We all take for granted for instance that when we place our loved ones in a facility, everyone at that facility knows exactly what to do, should anything arise.
And the key word there is "should". Things will arise. Sometimes every day, Sometimes every hour, sometimes constantly.
Eating. The STNA that is feeding them knows what to do. Don't they? This to me is one of the most difficult tasks that a facility worker has to do.
Lets just run some numbers. Say in a facility they have thirty two dementia patients. And around here that is a low number. But lets go with thirty two for the sake of argument.
Now, most facilities are required by law to staff at least one full time RN. Then things start to go downhill from there.
Around here, no one at the facility is allowed to make any changes to the patient. Meaning, if they are having breathing difficulty, they can't just increase their oxygen.
Oxygen is a drug, so it has to come from a doctor to increase it even in the time of an emergency. So, they call 911. That of course takes time. But it's how things are done around here.
The nurses on staff here can not even start an IV on a patient. It's just the way it is.
Now, back to the numbers. Thirty two patients. And it's breakfast time. Like I said most places have only one RN and in most cases you will never see an RN passing out breakfast trays for obvious reasons.
They have others on staff that does this. They are usually called STNA's, State Tested Nurses Assistants. The problem here is there may be only two, or three at most at any one given time to attend to thirty two residences.
So you take three STNA's and divide that by thirty two, you get ten and a half patients a piece.
Ten patients they have to see not only gets their food tray, but lets say six of them cannot feed themselves. That leaves you one STNA to feed six patients, after passing out the initial trays.
Not only do they do this, but they also make sure no one is or could choke on what food that is prepared for them. They have to make sure who gets the appropriate tray, be it a low sodium diet, or diabetic diet, or whatever.
And all this time they are having to get six of the ten hand fed, and hope the others are able to feed themselves. Someone in this scenario is going to eat some cold food.
What happens here in this one little example goes on every day, three times a day. And we are not even looking at the medication cart that has to go around and make sure everyone is taking the correct meds, when its time to take them.
In all of this chaos, the STNA is required to feed these people. Do it in a polite, professional manner. It doesn't happen. It's simply not possible.
Here is the main reason why. Let's say one of the three STNA's calls off sick. The facility is then required to get another STNA from another floor to do what they STNA's there would be doing.
Now, not any fault of theirs, but the STNA who has to cover, may not have ever worked with a dementia patient. Or hasn't recently, or perhaps only a few times.
Will they know what to do? Do they know anything about their patients they will be in charge of that day? Will they even know their name?
The answer to these questions is probably no. Will they be able to get your loved one to take their meds? Again, probably not. No fault of theirs, it's just a situation of circumstances that lead to this.
What I am getting at is every facility is drastically understaffed. Any one who works in this field will tell you that. It's called a census. When the census is down, meaning the number of patients the facility has, they tend to lay off workers.
It's a business. So be aware when you place someone in a facility, your caregiving does not stop. In fact in some cases you are not only a caregiver but a detective as well.
Making sure your loved one is being cared for. Most patients are, don't get me wrong. But there are cases where there simply aren't enough bodies to go around and it is indeed the patients who suffer.
This is a reality. It is the world we live in. These places are in business to make money. Don't ever forget that. They will indeed take care of your loved one.
But remember, your loved one is income to them. That is the simple truth. Make sure that they are getting the care they deserve.
If not, make a note of what is wrong. Talk to who ever is in charge. And then follow up and make sure changes have been made.
If you are still not satisfied, you can contact an ombudsman, every facility has them. They are volunteers who do nothing but make sure the patients needs are met.
If not, when they get involved the patients needs will be met. They work closely with the State and things will be corrected.
I am not posting this to scare anyone. It simply is something that some families would never think of. You still have to be on top of what is going on.
You just do...your job does not stop when someone is placed. Sometimes for whatever reason it can be more stressful. Stay on top of things. That way there will be no question as to your loved one getting the proper care.
I know of one case where a patient waited over an hour for their pain meds. This simply isn't acceptable. But it happens. Be alert to what is going on.
That will assure you know what should be done and if it is indeed being done. I have been around these facilities the better part of thirty years. I see what goes on, and what shouldn't go on.
At one time I was an investigator for the State of Ohio for six counties here. It was my job to make sure things were done, and done properly.
Most time things were. But you have to be on top of everything. You just do...