Wednesday, April 30, 2014

Stages of Dementia

"Mom is in stage four"..."Grandpa is in stage six now"...."They say my husband is in stage five for sure now".

The Alzheimer Association came up with these stages. There are seven of them I believe. The seventh one being the end or final stage, obviously.
I have said thousands of times in my speaking engagements and here on Mp how if it were not for the Alzheimer Association in the beginning of this I don't know what we would have done.

Every organization has it's plus's and it's minus's. The stages of dementia is a minus for them, in my humble opinion.

I have always wondered where and who came up with these stages. I am sure it wasn't a patient. Someone with a degree in something I imagine.

That's how most of these things get started. Someone, somewhere sitting behind a desk comes up with an idea to catagorize this disease in different stages.
The reason I think this is not appropriate is that being a patient I can tell you that these stages are a myth, at best.

What they talk about, the symptoms and such are pretty much spot on. But where they go wrong is when family members, caregivers and even patients put themselves or their loved ones in one of these stages.

The problem I have is with these "stages" is that I can very well be in stage two this morning, and then be in "stage" four by this afternoon or evening.
No patient stays in one "stage" for any length of time. Unless of course it is the "end stage" of this disease.

This disease is best described as ebbs and tides. In other words, we can go from being very aware of our surroundings, who is around us, what they are talking about, etc. in one moment...and the very next have no idea what is going on.
This can happen at any time. It can last for a few minutes, a few hours, or a few days. Then things get back to "normal".

Course there is no normal for patients, only what I call their "new normal". Many times I can be going over things with Leeanne Chames on Skype and know pretty much what we are talking about...then in a matter of minutes, I have no idea what we are even doing.

Then on some days, I can tell her what I want done, what I have in mind, and others, I couldn't tell you what is even going on let alone have an opinion on what we should do.

And this happens all the time. That is why when you someone or even you categorize your loved in a "stage", it gives the appearance to others that that if they know what the "stages" are that the patient is like that, and will be like that from now on.
Again, no one is any more thankful for the Alzheimer Association for what they have done for us, then me. They simply got this "stage" thing wrong in my opinion.
Every patient is in one of these "stages" that there is no doubt of. But they need to explain that these "stages" come and go. Sometimes they could last for hours, sometimes days.

We are not stuck in any one "stage" that is what I am trying to say. I am not, and your love one is not. The brain is the most complex organ in the body, and to say these stages or to explain them as if one is one particular stage is not how it works.

Any patient will tell you this. Once again if a patient was in on some things, there would be a better understanding of how or if things do work...

Monday, April 28, 2014

If you want information about dementia talk to a patient, they know they live it

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 champing 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. No one ever will. This is a huge money making business this dementia thing. I have never been paid to speak at an engagement, ever.
I have taken donations, room and board, things like that. But, just the same, I have always been the one who is speaking at a symposium that isn't paid.
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...

Sunday, April 27, 2014

I have dementia, dementia does not have me

So many times all I post here is what this disease has or is doing to me. We all do this.
Sometimes it's nice to know who you were before this disease came into one's life.
I have had a wonderful, exciting, fulfilling life. If all of this would come to an end today, I would die a happy man.
We have been very fortunate, Phyllis June and I. We were both previously married and neither of those marriages worked out.
Ours however was/is like a match made in heaven. Somehow we both managed to be with someone before that didn't respect either or us.
I had known Phyllis about three years before my divorce and ran into her right after my divorce and during hers.
It was as they say, love at first site. I even went as far as to tell my wife at the time, I was going to marry that girl.
Probably not the smartest thing to tell someone you are married to and whom you already have many issues with.
But I knew it. I knew in my heart of hearts we were made to be together. And we were. We started dating right away, lived together for five years then wed in 1984, the happiest day of my life.
Phyllis had one daughter and I had a son and daughter so there were no plans for children of our own. We were just as happy back then, as we are today.
We worked very hard, both of us. We both had two jobs, and had some of the finer things in life that we could afford through hard honest work ethic.
We both were in EMS, I was in law enforcement. Phyllis also works at a manufacturing company here in town and has been and executive secretary there for over 33 years now.
We had several businesses, successful I might add. We owned and operated a body removal business. That sounds horrid, but it was a very lucrative business, and one to which we showed the families of the deceased much respect.
I also had a private security company that I owned and operated. We employed a half a dozen people or so. It too was very exciting and also made a very good living at.
We worked for large companies. We didn't do the cheating husband or wife kind of thing.
I then moved to the private sector of security for some 15 years and it was there and working in EMS where I ended up having to retire on account of this disease.
Both Phyllis and I could not ask for a better life. We have family who love us, as we love them. We respect one another, we are just as much friends as we are husband and wife.
She knows me better than I know myself, which used to be a feat, but not so much anymore. I am blessed to have had the honor of calling her my wife all these years, and to have been around all the time Tia was growing up.
Since this disease has come into our lives everything has changed, but yet things remain the same in so many ways. I am still the Grandpa that the kids know will tease them all the time,
We are still the Aunt and Uncle who have taken our nieces just about everywhere they went their entire life.
I have said many times, I have dementia, dementia doesn't have me. It hasn't and it never will.
There are times, many times I don't know what is going on. But I have surrounded myself with the greatest group of people who understand this and we work through it.
Even though this horrible disease has come into our lives, I will not let it dominate who I am or who I was. I have one saving grace and the is the Lord Jesus Christ.
We do not get into religion or politics here, but I know when my time comes, I will enter into the Kingdom of Heaven saying to myself, "I gave it my all. We did a lot of good. Changed a lot of lives."
Do not mourn for me when I am gone. For I will dwell in the House of the Lord forever, and ever....

Saturday, April 26, 2014

Losing Days


 Whew. What a day. One of those days where I have been fumbling around here in a daze. I had to lay back down a while ago and didn't wake up till a couple of hours ago.
Wonder what I missed? Thing is I was missing things before I laid down. I so try to explain what this disease does.
I haven't a clue of what transpired today. That you think is no big deal. Probably isn't. I just lost a day. Well, half a day.
This happens with dementia. Your loved one goes through this, whether you realize it or not.
Could last a few minutes, an hour, or even days. Today has been a struggle, confusion. Many of you know all too well what I am talking about.
Now it's close to bed time. And I know that won't last. It's sorta like getting your days and nights mixed up at times.
They give me what they can to combat this, but it either isn't strong enough, or what I think there just isn't anything to combat this.
I hope your loved one is resting peacefully. I know all too well what you the caregiver will go through when they are not. Not being able to sleep is very difficult for the patient, and the caregiver, well it catches up with them just as bad if not worse.
It would be nice to have things be normal for say just a day. Or a night. Or a couple of hours even. Both the caregiver and the patient could surly use a break...
And tomorrow is coming

Thursday, April 24, 2014

Seei An Elder Attorney

Phyllis June and I had a long talk last night. I told her things were not right. Course this just brought more questions.

I have been getting worse, which is no surprise, but the sensation is getting the best of me. She wants to know how I know I am getting worse, what's going on? What is different?

All of these are legitimate questions, to which I haven't an answer. I just know I am. The confusion is getting more frequent. The stress is more intense, the fear of things is also worse.

One of the things with this disease is people have questions. And they always want answers. My best answer to Phyllis last night was, "I don't know"...

I always come back to its a disease of the brain, even the doctors I go to don't know. But like I have always said, no one know you better than yourself.

I know we talked for a while about this, but I don't remember what the conclusion was. I know I brought this up to her so she isn't left out in the dark.

When I used to have bad days, sometimes several in row I sometimes wouldn't say anything. Just ride them out. Now that has changed. I can no longer do that, cause they are so more frequent.

The days have turned into weeks. Weeks into months. I have long ago lost track of the perception of time. Sometimes this thing is like some giant merry go round, to which you can't stop.

I have often said the hardest thing about this disease is not only losing your memory, but losing everything around you. And all the while realizing it is happening.
I was always the type of person to get to the bottom of things. Figure out what is wrong, what the problem is and find a solution. To this disease there is none.

There is no "fix". I find myself thinking if things would just stay as they are I could figure out a way to deal with what is going on, but things chance so drastically with this disease.

I have been told that patients diagnosed with Early On-Set Alzheimers decline much more rapidly. I have no idea if this is true, and for the past few years I have disputed this claim.

I think now though it may be right. The decline I have experienced is very evident to me in just the past few weeks. Perhaps it's time to change my meds, increase some of them. Who knows?

The sleepless nights are getting the best of me. The nightmares. The wandering around like your in a strange place constantly, when in fact you are in your own home.
I think every patient goes through this, some just can't explain it. I in fact could be explaining it all wrong.

I am losing my identity of sorts. Can't remember from one minute to the next what I was doing, what I was going to do, etc. I don't comment of our posts much anymore. I am always worried that I will not understand what is going on and say something that is detrimental to what is being commented on.

Remember when you see a change in your loved one, they know it also. Least I do. My heat breaks for the caregivers. The ones who must watch their loved ones slip away a little at a time.

Take the time to be with your loved one. The most important thing we learned in the very beginning is things have to change. You must do what is important to you.
Your lifestyle must change. Everything you do must. The time you waste worrying about what is coming you never get back. Live for today, right now.

We have and Phyllis will always have that to be thankful for...and I do as well.

Things Are Not Right

Phyllis June and I had a long talk last night. I told her things were not right. Course this just brought more questions.

I have been getting worse, which is no surprise, but the sensation is getting the best of me. She wants to know how I know I am getting worse, what's going on? What is different?

All of these are legitimate questions, to which I haven't an answer. I just know I am. The confusion is getting more frequent. The stress is more intense, the fear of things is also worse.

One of the things with this disease is people have questions. And they always want answers. My best answer to Phyllis last night was, "I don't know"...

I always come back to its a disease of the brain, even the doctors I go to don't know. But like I have always said, no one know you better than yourself.

I know we talked for a while about this, but I don't remember what the conclusion was. I know I brought this up to her so she isn't left out in the dark.

When I used to have bad days, sometimes several in row I sometimes wouldn't say anything. Just ride them out. Now that has changed. I can no longer do that, cause they are so more frequent.

The days have turned into weeks. Weeks into months. I have long ago lost track of the perception of time. Sometimes this thing is like some giant merry go round, to which you can't stop.

I have often said the hardest thing about this disease is not only losing your memory, but losing everything around you. And all the while realizing it is happening.
I was always the type of person to get to the bottom of things. Figure out what is wrong, what the problem is and find a solution. To this disease there is none.

There is no "fix". I find myself thinking if things would just stay as they are I could figure out a way to deal with what is going on, but things chance so drastically with this disease.

I have been told that patients diagnosed with Early On-Set Alzheimers decline much more rapidly. I have no idea if this is true, and for the past few years I have disputed this claim.

I think now though it may be right. The decline I have experienced is very evident to me in just the past few weeks. Perhaps it's time to change my meds, increase some of them. Who knows?

The sleepless nights are getting the best of me. The nightmares. The wandering around like your in a strange place constantly, when in fact you are in your own home.
I think every patient goes through this, some just can't explain it. I in fact could be explaining it all wrong.

I am losing my identity of sorts. Can't remember from one minute to the next what I was doing, what I was going to do, etc. I don't comment of our posts much anymore. I am always worried that I will not understand what is going on and say something that is detrimental to what is being commented on.

Remember when you see a change in your loved one, they know it also. Least I do. My heat breaks for the caregivers. The ones who must watch their loved ones slip away a little at a time.

Take the time to be with your loved one. The most important thing we learned in the very beginning is things have to change. You must do what is important to you.
Your lifestyle must change. Everything you do must. The time you waste worrying about what is coming you never get back. Live for today, right now.

We have and Phyllis will always have that to be thankful for...and I do as well.

Saturday, April 19, 2014

Remember?

"Remember?" "Don't you remember?" This is something we say all the time. But it can be one of the very worse things you can say to a dementia patient.

Obviously they don't remember. We are asked this, least I am constantly. It's just the normal thing to do when conversing with someone.

But when you live with this disease, day in and day out, the very one thing you don't want to hear is someone asking you the very simple question, remember?

If you can, which will be hard, but try to "remember" not to use this word when talking with your loved one or any patient. It triggers a thing in our brains that instantly starts stress.

What we are doing is trying our best to just follow any given conversion, and if there are several people around or even just one on one , what saying "remember" does is puts a patient on the spot.

They don't. They can't. As hard as it is, try to remember not to use the word "remember".

In some cases even when you are just reminiscing with your loved one, asking them this still can immediately turn a conversation into a very, very stressful thing.

Thursday, April 17, 2014

Do's and Don'ts


Here is something I go through as a patient that every caregiver should be aware of.
I know my limitations. Know one knows me better than I do. I know what I can and cannot do.


I don't do power tools, unless Phyllis June is here. I don't use the stove when I am here by myself.


I never use a chainsaw without someone with me. I don't make any financial decisions without Phyllis June.
I don't answer the phone unless I recognize the number who is calling. I never go out of town alone.


I rarely go to Wal-Mart with just Sam and I. Usually I wait, 90% of the time and have Phyllis June go with me or rather I with her.
I just confused and it isn't worth the hassle. I won't use our boat, even in the back water at the camper without someone being with me.


These are just a few of the things that I don't do, won't do, or can't do. The list is much longer of course.


The problem is me. Always has been, always will be. You see being a dementia patient, I don't realize I can't do or shouldn't do these things.


It all comes back to memory and knowing or realizing what I can and can not do. Before I know it I am using the circular saw, because I have for years, or I will catch myself cleaning the hot tub and re-filling it with water.


This is a huge no no. I never remember to shut the water off and this have been nothing short of a disaster at times.


Remember, you know what your loved one can and cannot do. They know as well. The problem is, they will never remember the do's and the don'ts and at the worse times the don'ts come into play and somehow we are engaged in something what we should have never even have been doing.


This happens around here constantly. Can you imagine why Phyllis June calls me or texts me constantly? Not only to check on my welfare, but to make sure that for whatever reason I haven't gone to the camper and started cutting fire wood.


The do's and don't very for each patient and each stage of this disease. What I could do yesterday or last week, I may never be able to do again.


There is no rhyme nor reason to how these things occur. It is your responsibility to make sure we are safe...for others sake, as well as our own.
If you leave it up to us, that is just opening a can of worms you don't even want to deal with. Some things that have happened around here are border line hilarious that I have done.


I go over several in my book...but just the same, some or not so funny, and some down right dangerous. So know what your loved one is doing at all times.
You say this is almost impossible...think of the alternative. Better yet, just do everything you can to ensure our safety. We simply won't and can't remember...

Tuesday, April 15, 2014

Time Is My Enemy, I Am Progressing

Time is my enemy. That has never been more apparent to me then in recent weeks. Every patient progresses. Some slowly, some a bit quicker.
I have read that when you are diagnosed with Early On-Set Alzheimers, you tend to progress much faster then with Alzheimers or another form of dementia.
Is this true? Your guess is as good as mine. I can only speak of what I am going through, and the last few weeks have been very difficult for me.
Before I would always have days where I was in a "fog" if you will. But in few days it always seemed like I came around. And things were not great of course, but they didn't seem that much worse either.
That has been changing. My progression is not only more frequent now, but the symptoms I have never go away.
In the last few weeks I have been drawing a blank. I not only cannot recall things that have happened, but I am not sure of what is going on right here and now.
Makes for a very stressful situation. Everything about this disease is stressful. For the patient and the caregiver. The only difference is the patient never gets a break.
Sometimes there are very few respite times for the caregiver as well, but the difference being is the caregiver knows what is going on, they just have to adapt.
We patients can not. So far I have tried to adapt to what happens with this disease and have been pretty successful. Many say, "How can you post like do, and explain how this disease effects you so well?
The answer is simple. I just tell the story. It's how my days go, all I need to do is put them to paper. But now, things are getting much more difficult to do that.
This is the very reason three of four years ago I started the video series. It was designed to help people who are going through this get a better understanding from actually listening to a dementia patient.
But most of all they were for me, to go back and see how I could talk about things, and compare that to what is happening now. I have always said "You will never get any better information about dementia then what you will get from a patient."
I have also said that my time is limited. Some have heard this, but not really heard this. I have talked
It's as though what I do here, the posts I make will just continue and things will stay the same. That is not going to happen, for me or anyone.
Many times when we are discussing plans and future things for Mp, I tell Leeanne I need this done now. Not tomorrow, not three days from now and not next week.
I don't have the time for people who tell me we can do this in a few months, or whatever. I few months, weeks or even days to me may be all I ever have to accomplish the goals I have for Mp and some personal goals.
Now, even though some have not listen, I am afraid I am getting to the stage or part of this disease, where there is no turning back. The part where things are bad all the time, and they will just get worse.
All this being said, Leeanne Chames, being Executive Director of Memory People will be taking on more and more to ensure things run as I would want them too. I have said we could not do the things we do without the Admins we have, and that goes double for what Leeanne does here.
She heads up our Admin team, but we are just that, a team. I could never thank them enough for what they have done since the beginning of this journey.
We have a producer and a publisher we are dealing with right now, and have told them from the start all correspondences goes through Leeanne.
You would be surprised at some who are in the know about dementia, yet still think that I can do or keep track of some of the things that are in the works.
I can't. And that is why you not only see Leeanne in the vital role she is, but will see more and more things coming from her. Know this, everything that goes on here I know about and have approved.
Leeanne makes sure she runs things by me, no matter how many times it takes. She makes sure that I and in most cases Phyllis June are on top of what is going on.
My nightmares are getting the best of me. I had at least one if not two last night. These have been occurring for at least a couple of years. I just can't go without sleep and try to make sense of what is going on in the daytime.
I hope to continue to post as I always have. Again, common sense tells me those times are limited. We are going through a change here with FB, everyone knows about the changes they have implemented about sharing posts that are in groups on FB.
This is happening to every group on FB, not just Mp. I wish it was different, but it isn't. The one thing I do know, as a patient, this is the least of my problems.
If someone reads something I have posted and are upset, well sorry bout that. I can not tell you how important it is to continue to share here on Mp.
May it upset some family members? Probably. But in the grand scheme of things, this is really a no brainer. They will get over it, they will come around...or they won't,
The fact remains your loved one will continue to progress and by letting anyone dictate to you what you post, and what you comment on here is not the right thing to do.
You are hurting yourself and your loved one. If I can not tell you one more thing that helps you care for your loved one, let it be that you won't allow anyone to tell you what you are doing for your loved one is wrong. This in itself is wrong on so many levels.
Nor let anyone dictate to you when you vent on here about anything. This disease is a powder keg. And if you don't vent, you will explode with anger, rage, pity, fear and yes even violence.
Do what's right for you and the patient. Not what someone thinks you should do or say. You only get one shot at this. Make it your best one. There are no do-overs.
We have a great resource here on Mp. One that will stand the test of time. And that has always been because of what we do here, what we discuss here, and the Awareness and Suppport we bring to one another.
Don't let anyone change that. It may very well be the worst mistake you could make, when it comes to dealing with this disease. If these people who know so much and are so willing to tell you how bad you are doing, they need to join Mp and enlighten us all.
That isn't how these people operate thought. They do think they know everything, but they don't want to be bothered with anything as well...
Be true to yourself. Listen to your heart. You will never go wrong. Never...
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Friday, April 11, 2014

What is important

We sometimes get sidetracked on what is, and what is not important in our lives. When you are dealing with someone in your family that has dementia, that person takes precedence over everything and everyone. Least thats what should happen.


Sometimes we lose track of what is important, and it’s replaced by something that as trivial as it is, it seems like the end of the world at the time.As a patient, I long ago was able to sort the important things from the “small stuff”.


Everyone one of us is different, however you have to have some sort of way of separating these two things or you will go insane.Let me try to give you an example. I have read posts about the caregiver not being able to get their loved one to the doctor.
Their loved one just refuses.

Now this to most is a catastrophe. Or is it? What is going to happen if your loved one misses their doctor’s appointment? Really, what will happen? Chances are nothing. Unless their is some underlined issue as a UTI or something else medically wrong, just by missing a doctor’s appointment is not the end of the world.


You see, it’s more than a doctor’s appointment. You have to start early explaining to them what is going on. Where you need to take them, and why. Then you have to get them ready, dressed, fed, etc.Then you have to hopefully get them outside and into the car without them going spastic. And spastic is putting it mildly.


If a patient has made up their mind they don’t want to do something, you nor no one else is going to change that.And why would you want to? Wouldn’t it be much easier to call the doctor’s office, explain them who the patient is and what they are going to see the doctor for.


Then tell them your loved one simply refuses to go.Any receptionist at a doctor’s office has dealt with this many times. Doctor’s appointments are constantly getting canceled for one reason of another.


Believe me, the chances of anything happening because your loved one refuses to go to the doctor are remote at best. I can tell from experience that in the last five years I have seen many doctor’s, many times. But there is only one time I can tell you that it really mattered.


The one Neuro had changed my meds and it didn’t go well. I indeed needed to see a doctor and that was easy to see by anyone.Just try to remember, if your loved one doesn’t do something like take a bath, or eat as well as you think they shoulda           .
Or perhaps doesn’t want to do something as in a doctor’s appointment or whatever it may be…what is going to happen if they don’t bath for a few days? Or if they don’t eat as much, or they just sit in front of the window and stare out it?


A bit of baby powder strategically placed will eliminate most bathing problems, and a person can go a very long time with eating. And we patients do not need to be entertained 24/7, as some would have you think. The main thing is to keep them hydrated, and if they have underlined conditions such as diabetes then you must be on top of their diet


.Plans around this household are never made. Phyllis June knows even the best laid plan can and most likely will end up not going as planned. I refuse to do anything or put myself in any situation that can or could cause me stress.


I just won’t do it. I voice my opinion and we always make other arrangements. It took some time for me to do this, but now that realize that somethings just aren’t worth the chance of me getting all stressed out about.That is the same as not wanting to go to the doctor, except your loved one may not be able to communicate that they refuse to go.


My Neuro trips were out of town and always took close to eight hours from beginning to end. It simply wasn’t worth it to put myself through all of this and for him to tell me I had declined in recent months. I knew that, before we went.


For that reason I don’t do any more mini-mental tests, and unless things get really bad, the only doctor I see is my general practitioner every six months to stay on top of my meds. If you can answer yes to these three simple questions, you are and will remain way ahead of the game.


Are they Safe?
Are the Pain Free?
Are the Content?


Safe? Meaning is anything the are doing going to hurt them or someone around them? If not, then pick your battles wisely.


Pain Free? It is not difficult to tell if someone is in pain. Especially if you know this person. Check for underlined things if you feel they are in pain. Could be something as simple as sharp point of a pen jabbing them through their pant leg, or they could have something caught between their teeth causing them discomfort.


Content? Do they look content? Do they look agitated? To some music can soothe the soul, to other patients it would be like running your nails down a chalk board. There is nothing wrong if your loved one just sits and does nothing. Somewhere along the line many have come to believe that we patients have to be entertained constantly.
I am very much content just sitting outside at our camper and watching the day go by.

I also am content someday to be busy, other days I don’t want to do anything. You can almost always tell if your loved one is content.


If you can make sure these three things are a constant in their lives and in their surroundings, again things will go much smoother for you and the patient. I apologize for the length of this post.


I have been working on it for a day or two. I just want people to remember what’s important, and separate that from the “small stuff”…in time you will see, it’s all small stuff.

Thursday, April 10, 2014

Live today like there is no tomorrow

I wish I was in one of the southern states fishing. Not the ocean, on one of those charter trips, but in one of the thousands of lakes. The smaller ones.

I always said I would do that. Go bass fishing where the lunkers are. Some of the biggest bass taken our from the southern states.

This is not possible now. I should have done this years ago. But put it off like many of us do. Always thinking I would do it one day.

One day has come and gone. With this damn disease I can no longer go and do the things I once could.

We have a camper and I do fish there. I love the peacefulness of camping and being out doors. I just wish I would have done so many other things.

I am giving everyone here a present today. Something you probably have never received before. The present is...live today like there is no tomorrow.

All too often in our busy lives we put off things we want to do because there isn't enough time, or schedules don't really work out, or we just say "We will, just not right now".

There is no tomorrows. Do what you want with your loved ones now. We did many things with our daughter when she was growing up. Took her places that not only she loved, but that we all enjoyed as a family.

We did the same for our grandkids and nieces. From zoo's to waterparks, to amusement parks, to the ocean. We never said we can't eat at a certain restaurant cause we had the girls...we taught them at a very young age when they were with us they acted accordingly.

We sit at the table here at the house and have dinner whenever they are here. We say grace every meal. We talk about what is going on in thier lives.

There are so many things I wish we would have done, even though we had many, many memorable moments with these kids.

Don't put things off. It can be as simple as just calling your Mom and telling her you are thinking of her. Our showing up at your grandkids ball game, or taking you daughter out to dinner.

I no longer can attend our kids sports activities. I feel horrible I can't do that. I know they understand. I just wish I would have really taken in some of those moments more than I did at the time.
I now know all to well what some counselors told us in the beginning of this disease. When they said you need to change your way of living today.

Do what is important. Do the things you always said you wanted to. I think sometimes I should have done more, instead of pouring everything I had into fighting this disease.
I will continue the fight. Just don't let this disease take from you what you want to do, especially in the beginning. It will in time take everything. Don't allow it to happen in the beginning.
Do what you can. Spend as much time as possible doing the things you love..."While You Still Can..."

Stay on track

Stay on track...we hear this a lot in our daily lives. Keep to the point. People in general lead busy lives and you are much better off getting your point across to them if you just come out and say what's on your mind.

I used to be able to do this. Explain what I was talking about, in a concise and articulate manner. Leaving out many adjectives, and probabilities. I always tried to tell people not what they wanted to hear, but what they needed to hear.

Now, when I engage in any conversation, I am usually lost in the first two or three minutes. What I do then is what is commonly known as the "rope a dope".
I dodge any questions that come my way by simply saying, "Yea, that's right" or "I know exactly how you feel".

Truth is, I don't know if that's right, and I have no idea how anyone feels. It's not that I am deceiving anyone. It's how this disease works.

We patients don't have the ability to follow much. We don't have the ability to think about what is being said then comment on it. I find in conversations that I am still trying to decipher what was said two minutes ago, when the person is now telling me something else.

Confusion sets in. Or I should say, confusion gets worse. You constantly deal with confusion with this disease. There are no breaks, no time outs.

You are constantly mentally, physically, and emotionally drained. Sometimes it would be nice to wake up and then go from not being so confused, to slowly getting confused later in the day.
It doesn't work like that. For me I am just as much confused the very first time I open my eyes, as I am right before I finally get to sleep that night.

I read posts where caregivers are at the very brink of going bonkers. They can't understand why their loved ones do the things they do.

I wish there were a way of explaining it. I can tell you that it is a disease of the brain, the most complex organ in the human body. No one knows to date why things happen as they do, why some can do things, yet others have lost that ability long ago.

For me I am losing more and more it seems everyday. I have had a difficult time recognizing things. The simplest of things. For example I can be looking for the TV remote, and it will be sitting right where it always is.

Or I can open the refrigerator wanting to get a glass of milk and not see the milk sitting right there. It's not that I don't see these things, it's that my brain is not working correctly to tell me what I am seeing is what I indeed am looking for.

The occipital nerve that goes from our eyes to our brain, makes it possible for us to see things. With dementia, for whatever reason the part of the brain that makes this possible, for me anyways, does not work.
And all of this is random. It happens all the time, but it doesn't happen with everything. I may have my keys laying right in front of me, yet spend an hour looking for them, cause I see them, yet my brain doesn't tell me that is what I am seeing.
The struggles continue, and I am not complaining. I simply do posts like this to try to explain what is going on with me, in hopes if your loved one does something like this, you will have a better understanding.
You will never hear a doctor tell you what I have just said. You will never hear this explained by some patients even. They simply don't know why what is happening to them is.
I don't know either. I can explain what is happening to some extent. But as always, it's the why.
And it always leads back to the disease. It's always the disease. Some get so sick of hearing this. If you have dementia, you get sick of a lot of things.
I have often said the hardest part of this disease is losing your mind, and realizing all along it is happening. It is indeed hell on earth. For both the caregiver and the patient...

Saturday, April 5, 2014

Sleepless night and Dementia

I am physically and mentally exhausted...these sleepless nights catch up with me.
Having had sleeping problems for months now, sometimes it gets the best of you.

I do know this, if your loved one is struggling with sleepless nights, let them sleep in the day time and don't worry about it.

Many people think I have my days and nights mixed up, I don't. I have nightmares that wake me up. Almost nightly.

And when you have nightmares with this disease, at least me anyways, I don't remember the nightmares, but I simply lay there and stress, fear and anxiety set in.

Sleep is essential for everyone. We all know how we feel when we don't get enough sleep. Combine that with dementia and it is a recipe for disaster...

Tuesday, April 1, 2014

Who Is There?

Who's behind me? Someone's there. Ever have that feeling. The feeling where someone is right behind you, lurking in the darkness?

For whatever reason this is what I have been experiencing for some time now.
In our house here, what ever room I walk to I have this eery feeling that there is someone right behind me, constantly.

Of course there isn't. But the feeling is there just the same. It's one more thing on top of all the others this disease causes.

The feeling of being watched, the feeling of being followed, the feeling of someone being in your house. Everywhere I go I have this feeling now.

The thing I wonder is, is this something that is here to stay, or is it perhaps temporary?

If your loved one complains that there is someone watching them or following them, I know exactly what they are going through. As always, this is very real to them.

You as there caregiver know there is no one there, but they do not. It's a horrible feeling. I never see anyone, obviously cause there's no one there.

But many could even see someone following them, or think there is someone right behind them. It's a very hard thing to deal