Friday, February 28, 2014

There is nothing like caregiving for a dementia patient



Vent alert! This post as always are just my thoughts. And today, I am pretty fired up about these so called people who know more than you do about your loved one...

When your car need repaired would you take it to a car wash? When you need information about how to fix a plumbing problem, would you call a dentist?

If you want to know about this disease, why would you ever listen to people who no earthly idea about what they are talking about?

I have seen posts where someone stated we are all caregivers from an early age. Leeanne Chames covered this quite eloquently.

We care for our children since birth, we care for our siblings since we knew the meaning of caring. We care for our parents. Our spouses.

This is all very true. But when it comes to being a caregiver for someone with dementia that alone brings on a whole new meaning to the word caregiver.

This is nothing like anyone has ever experienced. You think that you cared for a loved one in the final stages of cancer, so how hard can this be?

There in no comparison. None. I am not diminishing what a cancer patient goes through, or say someone on dialysis has to do. But until you have began the journey of caring for someone with dementia, you will not know and cannot possibly understand what it entails.

This disease came into my life about five years before my diagnosis. Those were five, long hard years for me. And me alone. No one would listen, everyone just kept saying, "It's normal to forget things."

What people fail to realize, and you never will know until dealing with this disease is memory loss is but one part of what is going on.

It's what everyone talks about, how their loved one forgets this or forgets that. But until you are a full time caregiver for that person, you haven't a clue.

Remember this the next time a sister, or brother, or friend tells you how to deal with a situation with this disease. They mean well, but have no idea what they are talking about.

Know this, I have had the privilege of being around some very so called important people in the dementia business. And that's what it is, a business.

A very big business. But I can tell you without hesitation some of them should stick to what they know, cause it isn't caregiving. And it's not because I say so, I am nobody.

But there is some common sense that goes along with this caregiving thing and to be blunt some don't have any.

I posted a week or so ago about "Where's the Manual?" I received many personal messages about manuals that they some have seen that work very well for them.

My whole point was missed. Of course there are manuals about caregiving and this disease. The point I was trying to make is some of them aren't worth the paper it took to print them.

You cannot have a set of rules when it comes to caregiving. I say again, you cannot have a set of rules, when it comes to caregiving.

IT doesn't work like that. To think this way one would have to believe that every patient reacts to what the "manual" says and to do what is suggested will work.

There are no two patients alike. Just as there cannot possibly no one manual that will work for all caregivers.

I think this is something that was born out of the Alzheimer Association. The same organization that will not accept patients in a support group unless they are of a certain age.

I'm not kidding. Unless you are a certain age, you cannot attended some group meetings that they put on.

You will never hear me bash the Alzheimer Association. What I am telling you is fact. It's just the way they do somethings.

The Alzheimer Association was a God send to us. They gave us answer when we didn't know where to turn. But that alone doesn't mean they have the corner market on this caregiving thing.

For two years or so, they have not done in home visits. Comes down to money. And I can understand this. But you need to have priorities and not doing in home visits for example you leave out tens of thousands of people who will not be helped.

So...don't let anyone tell you they know what and how to be a caregiver. Unless they have walked in your shoes, they don't get the opportunity to have an opinion is my thinking.

If someone around you says to do this, or do that...ask them where they got their information. Every answer is the same. "Well someone said that." or " I read it somewhere".

Don't let these so called professionals tell you how to care for you loved one. There is but one manual you need to go my. And that my friends can be found in your heart...

Dementia, a roadblock to the pathway of your brain

Road blocks. Obstacles that seem to be at every turn. This is a good example of dementia.

You brain is merely a pathway, each one going a specific way. Your speech, the way you do things, the way you handle adversity, the way you respond to crisis.

Every thought you have, is first stored in your the front of your brain and then the brain decides if that thought is worth saving, or not. 

Junk files. Just like in a computer, are brain if full of files that are considered junk. Not needed. Taking up valuable space.

These thoughts or files are then gone over by your brain and it decides which is good to remember, which is not.

All the pathways to this must be clear. When you have dementia, these pathways are blocked. Your brain needs another way around to go where it needs to go to remember.

This can be someone's name, a phone number, what day it is, anything...but since that road block is there your brain can sometimes take an alternate route.

This happens when someone is trying to get you to remember something, and goes about it by process of elimination.

"You remember Bob...he works at the post office, he goes to our church, he and his wife Mary have two kids who both have stayed at our house."

In essence you are getting the person to remember "Bob" by telling them more about him. Where he works, his wife's name, etc.

When you have dementia, these other pathway you try to create just can't be created. The road block that is in our brain...there is no detour for.

You can't make a dementia patient remember something. You can't make a dementia patient do something because they once could.

You can't make a dementia patient enjoy the things they did before this disease came into their lives. And by trying to do so, all you are doing is creating stress for the patient and yourself.

The pathways in our brain our indeed blocked. Thoughts and memories for the most part go straight to our junk file.

Dementia patients don't remember things, because what ever it is you are tying to get them to remember...it just isn't there for them to try to.

When we forget something, we don't have the ability to recall it. It is gone. It's very hard for people to understand this. And even harder for us as patients to try to explain what we are living with...

Acceptance does not mean you have given up.



Accepting simply means you understand what is going on, what is coming, and you have made plans to ensure your journey.

Accepting certainly doesn't mean you have given up or even that this is over. It simply is a way of wrapping your mind around what is happening.

I have said this a thousand times, when there is denial, there is void that never will be filled.

Seeing both family members who accept this and seeing those who deny it, there is no question who is most at peace.

And I do believe acceptance does give you power over what is happening. It gives you knowledge cause you are open to discussion.

And knowledge is power. When I talk to people about my disease and our journey I tell them that we have indeed accepted what is happening.

To us, there is nothing else we can do. Dementia will progress and there will come a day when those who are in denial and have been in denial will understand the precious time they lost, by simply treating this disease as the elephant in the room.

None of this helps a caregiver/family member at three in the morning when you've only gotten about two hours sleep and chaos ensues once again.

I do know that the patient will receive better care from a family member who understands what is going on and what will happen.

They won't if they are surrounded by people who think this will pass. It won't. And you will never forgive yourself for not doing everything you possibly could, While You Still Can...

What is the Difference?



Whats the difference? There is a huge difference. I am talking about the way I am treated, a dementia patient.

The people who know me, are around me treat me as if nothing has changed for the most part. We are for the most part included in anything that may be going on, be it family gatherings, social events and such.

Most tell me when it comes to my cognitive deficits, "I do that. I forget things all the time."

They are trying to reassure me that what I have, as bad as it is, they to have experienced some of it as well. Of course they haven't. But they try to convince me they have all the time.

Then there are those people who don't know me. Aren't around me, never have been, chances are never will be. The difference in these people are their understanding of what I go through also.

They are what I classify as the ones who know everything, but in reality know nothing. I have had total strangers tell me of the hazards of me driving.

Now keep in mind, they don't know me, but they know because I have this disease, there is no way I should be driving.

That is what we call stigma. There is indeed a stigma that goes along with dementia. There are those who think you have to be at least seventy years or older to have dementia.

They picture a dementia patient sitting in a nursing home, staring out the window in a wheel chair with drool running down there chin.

How could you possibly drive? I have had "experts" in the field of dementia tell me this. And I am not talking in passing. This has occurred on a national radio station where the host and the other guests are indeed "professionals" in the field of dementia.

It's a situation where I as a patient will never get them to understand that I am not their Dad, their grandfather, or aunt who is in the later stages of this disease.

All too often we patients are classified as those who have the disease, and those who don't. There seems to be a huge space that not many recognize that some patients can and do still lead productive lives.

Then there are those people who I meet either through my speaking engagements or something pertaining to dementia. Those who for whatever reason will never admit that they or their loved one have a cognitive impairment.

Denial. Not only are they in denial, but they try to put me in that category as well. These are the people I don't have time for. Nothing you say or do will ever convince them of the struggles I go through, and what their loved one is experiencing.

They will have to see for themselves. Some do, some never will. Time is my enemy when it comes to this disease. No patient knows if they have six months, six weeks or six days when all hell will come crashing down.

They for lack of a better term, will slip into the darkness and simply won't ever come back out. This is what we patients live with daily. That is why when someone I'm around anymore who is in denial of some sort, I try to just listen or in fact change the subject.

These people are as defiant as you will ever see. Keep in mind that the people from the "great" generation are as proud and private as you will ever get.

Some of these people, our fathers, mothers, grandfathers, grandmothers, they are not in denial. It is simply the generation that they were raised in.

But, if those who are in denial were half as committed to giving their loved one the care they deserve as they are of carrying the torch of denial around with them, they would indeed be better off themselves as would the patient.

When you are in denial, you take people down with you. If you are a patient the family tells everyone don't dare mention dementia to Dad. If you are a family member, you again don't dare mention the word dementia around these people either.

Everyone loses. I try to surround myself with clear thinking individuals. No one need have the same beliefs I have, but I don't have the time nor the fortitude to be around negative thinking people and those who are indeed in denial.

There are three types of people in my life. Those who know everything. Those who can tell you everything, and those who listen to me...the patient.

Granted, the day will come when I will make no sense what so ever. Sometimes I think that day is already here. But for now, I can explain this disease to both other patients who are just being diagnosed, and to those family members and caregivers who are just starting this journey.

Getting them to listen? Well, that's on them. I will only stop talking when this disease takes that ability from me. Could be in five years, five months, five weeks or five days.

Till then, I will tell you exactly what a patient lives with daily and what you the caregiver can do to make things easier on the patient and yourself.

I am not an expert. But I am a patient...one that will never quit talking about this disease until the very end. While I Still Can...

Wednesday, February 26, 2014

No drugs slow the disease, there is no cure

Sometimes we get medication and what they will do for the patient is confusing. Most family members want to see a marked improvement in their loved from what ever medications they may be taking.

And up until a couple of years ago, these drug companies did indeed advertise that their medication will in fact slow the progression of this disease.

They all did it. Namanda, Aricept, Exelon...even the doctor's who were prescribing these meds to their patients would say, that this will indeed slow the progression.

Then came the FDA. The Food and Drug Administration. And not a moment to soon. They came down hard on these companies, but none harder the drug I am on, the Exelon patch.

They were told to revamp their advertising structure or pull their product. What they were peddling just wasn't true.

So, they of course complied and now what you will read in the find print if no where else that the Exelon patch may lesson the symptoms of dementia.

And the key word there is "may". They can't and aren't allowed to even come out and say that the patch will indeed lesson the symptoms, cause it simply does not.

Now you as a caregiver or family member may see a definite change in your loved one and think it has to do with the meds they are on. This is common, and natural.

But the truth is, there isn't a drug on the market that will slow the progression of this disease. None.

You will hear of cases where this is coming, or that is coming. Within five years this will happen, or that. Again, if someone found a cure for dementia today it would take decades for it to filter down to people like you and I.

This is how are system works. And thats if it was found to be a cure. First of all the are close to coming up with something in rats.

If you are a patient like me, hearing this is not hope, its a death sentence. If what we have going for us is they are close to a breakthrough of some sort with the study of rats...

Common sense tells you we are decades away from any drug that will indeed slow the progression, let alone a cure for dementia.

Now some have called me a prognosticator, a person who doesn't believe in cure even being found. That couldn't be further from the truth. I know one day there will be a cure, just like there was with AIDS in the eighties.

But not in my lifetime. My hope is our grandkids do not have to worry about dementia. And that is indeed just a hope. I think within twenty years there will be strides made.

A cure? Who knows. But again it will not be in my lifetime, or in anyone you know who has this disease right now.

There is nothing that slows the progression. If you doctor tells you that, I would look for a new doctor. Anyone who says this is simply not right.

And there is no one who would like to see something that makes our world more bearable. But right now, we have meds that "may" lesson the symptoms.

And thats not because I said so, that's what the FDA required these drug companies to put on their labels. Or else they would not be in business.

You can't go around selling snake oil if you will. You can't profit over something that you say will do something when in fact all the studies shows it will not.

Is this hard to hear? Of course. And if you believe your loved one is getting better cause their on Aricept, or whatever...that's fine. That's all that really matters.

But the truth of it is, the fact of it are, nothing on the market today can or does slow the progression. I will take anyone to task who says there is.

You will have those who will site internet articles, and things. But not one person can site a medical study to any drug on the market today that does indeed slow the progression of dementia, let alone a cure.

If someone is telling you other wise they are either out to get your money, or they are in some sort of denial themselves. And that you can count on....
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Monday, February 24, 2014

Failure to Thrive


Failure to thrive. This is a condition found mostly in babies or young children where their parents or whoever do not take care of them properly.

Be it underfed, under loved, etc. I think about this term often, and it could be used in reference to dementia patients as well.

Not that the caregiver or family member isn't taking care of them, but patients indeed do have a failure to thrive on their own.

Not brought on by themselves by something they are doing, but brought on by this disease called dementia.

I won't eat unless I am reminded. My mind no longer alerts me like it does other people that I am hungry. This alone is a failure to thrive issue brought on by this disease.

Not wanting to be around a lot of people. Holidays for example, or just even going out to eat in a restaurant. Keeping my interactions with strangers even family members at a limit.

Again, failure to thrive. You have to have interaction with other human beings if for nothing else keep your sanity. This is why you will hear prisoners who are on death row say "the worst thing about death row is not knowing you are going to be put to death, it's the solitary that they keep you in."

On death row, you never see anyone, or anything. No TV, no newspapers, no interaction with another human being accept the guards. Failure to thrive.

When patients allow themselves to be recluse, not go out in public because of the stress it puts on them, they are in some cases doing themselves more harm than good.

You have to thrive in this world to survive. And that includes but is not limited to human interaction. When that is taken away by this disease, it leads to so many issues.

Dementia alone can cause one to not want to function in any compacity. You simply don't have the cognitive ability to do what is right for yourself.

One of them being a failure to thrive indeed brought on by dementia....I have never heard of anyone speak of this. I really think it's never been associated with dementia.

But it is. Just one more thing we patients deal with that simply cannot be "fixed"...

Caregivers and Medication

"I can't take another day"...How many caregivers have heard this or even said it to themselves?

Even as open as we are here on Mp, there is always more to what someone posts. Just stands to reason.

When I read about the struggles the caregiver/family member goes through it makes me sad. Sad cause I know as a patient that I would do anything to make this journey easier for me wife. Anything.

But I can't. What I do is make things more difficult. Why? Because I have dementia. I do things I shouldn't. I forget things constantly. I make her life miserable at times.

She never complains. But I know it's true. Any caregiver or family member who deals with this have had days where they just want to chuck it all in.

The only thing I can suggest is medication. Now is about the time you are thinking "Here we go. More meds, now for me, the caregiver".

But it's true. Stress is the most dangerous thing we deal with as patients and caregivers. Heart attacks are the number one killer and heart attacks are associated with stress. Stress can and does kill. And you cannot escape stress. You just can't.

To do so you would have to be able to be in a zen mode all the time. Where nothing bothered you and you just wouldn't allow anything to bother you.

We all know this could never happen. Most of us get worked up over the smallest of things. From our loved one not showering, to them back talking you. To flipping through the channels on TV.

To being mean and vindictive. Hateful in some cases. All of these things and many, many more you will never be able to fix. I talk about this all the time.

You cannot fix what is happening. You can at times do things to make a situation better. Or mis-direct the conversation to something else, or just agree with them.

But I can tell you that caregivers need something to take the edge off. Not something that will make them zombie like or anywhere near that.

But something that will make it so they can effectively do what needs be done, but yet be able to handle all the madness that goes with this disease.

My wife is on medication to do just that. Very mild, tension relievers. Something that can indeed help her cope with her daily living as well as the absurd things I do.

It's a constant battle. A juggling of sorts. One you will never win, but need to be able to know what is serious, and what is more of a discomfort.

Your loved one not showering is not serious. As much as it seems to you at the time, them not taking a shower or bath for a few days is not going to change the course of the world.

Not going to a doctor's appointment fits in this category as well. When you are in mid to late stage of this disease, if the patient does not want to go to the doctor, and simply refuses, making them is not the answer.

Nothing is going to change most likely from one doctor appointment to the next. Now if there is indeed a medical emergency of some sort this all changes.

What I am trying to get across is caregivers need stress relievers. If it's in the form of some type of nerve medication, so be it. You need something to take the edge off.

To realize what is and what isn't going to change things if the patient refuses. Many times we read posts about how the patient hasn't taken their medication.

Again, you have to pick your battles. I have gone days without taking my medication. Not because I refuse, but because I forget. They can be lying here right in front of me on the table and I won't take them.

It doesn't resonate. But it's not the end of the world. Phyllis June has learned long ago if I miss a round of drugs some mornings, some evenings, or even all day, most likely nothing is going to change.

She doesn't go spastic about my idiosyncrasies. She tries her best to roll with the flow. How can she? She takes meds to help her cope with all of this.

They don't change a thing, they don't make her outlook on this disease any better or worse. They simply help her cope with what is happening.

The same way with some of the medication I am on. I don't notice a difference in me, but others around me do. And that is how these meds are supposed to work.

Know this, just being a caregiver does not seclude you from stress. In fact, being a caregiver makes you more susceptible to stress. And there are things that can be prescribed to help you with these stressful days.

It's nothing to be embarrassed about. In fact it can and probably will make you a better caregiver in the long run. Simply because the chances of you dying from stress related situations are minimized...

You can't help anyone if this disease gets the best of you, the family member or the caregiver...
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Friday, February 21, 2014

This Disease is Hard for Everyone

Most of the time, not all, but most of the time your loved one with dementia has no idea what you are talking about.

I know this cause it happens daily to me. Leeanne Chamesand I Skype two or three times a week about upcoming things for Mp.

And most of the time we spend skypeing is her telling me things we have went over the last time we skyped. 

There are many projects in the works behind the scenes here at Mp. There always are and it takes up about 90% of my time.

I can be working on one project, think I know exactly what I am doing and then wham, I have no idea what I was doing or was even working on.

It has to do with me attention span. It is about three minutes on a good day. So you can imagine the challenge Leeanne has trying to keep me on point, and working on one thing at a time.

Plus, I want everything done yesterday. Waiting till tomorrow is just a waste of a day. But the things we deal with all take time.

I have in the works for example a TV producer wanting me to do a taping of a show to be aired on PBS. The segment I will be doing is about animals and how they help the handicapped.

Betty White will also be appearing on that same show. But, I want this done tomorrow. And things like these take months to prepare for.

I have done these before. The producer the last time was in Los Angeles and he had to hire a camera crew and a producer here in Ohio to come and shoot the footage for the documentary he was working on.

They were here at our house for three full days shooting film. We had about ten or twelve hours of footage shot for a half hour segment. There were lights and camera's all over the house here.

But it did end up being a very good experience for both the producers, the camera man and both Phyllis June and I.

As always I had to have someone around to keep me on track. So when I tell you your loved one only hears a portion of what you are saying to them, and then they may only understand a small part of that...try to keep that in mind.

Everything about this disease is hard. For the patient and everyone they come into contact

Dementia patients are not hiding or hoarding things, they forget where they belong



When someone living with Dementia believes something to be true, it is indeed true, in the world of Dementia...

You cannot change this. They cannot change this.

Are they safe?

Are they content?

Are they pain free?

If you can answer yes to these three simple questions, you have done the best you can do. Pick your battles. Chances are you won't win any of them.

"Mom hides or hoards things". We hear this all the time from caregivers. I suggest that they are putting things where they believe they go.

To consciously hide something, one would have to remember the item they want hid, where to hide it and to hide other things like that again.

You will hear they hide the bananas, or the bread. Perhaps their purse, or your purse. I think they are putting things away, where they believe they go.

We have found things in the fridge that belong in the cubbord. We have found screw drivers in the silverware drawer. Keys in the mailbox. Little things like this happen all the time.

I don't remember doing any of these things, but it not hard to figure out when you find a screwdriver in the silverware drawer who did it around here.

It's not that I am hiding anything. I am simply putting things away where I believe they go. Some may indeed be hiding things. But I contend most of the time they are simply putting their purse in the oven...cause that's where it goes.

Food for thought. From a patient who does these types of things all the time. And I know I'm not hiding anything.

Thursday, February 20, 2014

I Will Not Endorse False Dramatization


I posted about a dramatization I used to do at my speaking engagements. I would like to compare what I suggest you do, to the idea of putting on goggles, oven mitts, head phones with blaring music, and marbles in your shoes.

The one with the goggles and oven mitts is indeed used in many symposiums. One that I attended matter of fact.

I took immediate offense to it. It was demeaning and degrading. This was no different than making fun a blind person. There were a handful of people plucked out of the audience and they were asked to don the goggle, mitts, etc.

Then they started the music blaring in their ears, and gave them five tasks to preform.

First of all, if you know anything about dementia, which the individual putting this side show on does, you should know you cannot give a dementia patient five tasks at once and expect results.

It ins't going to happen under any circumstances. They simply cannot do that. And being a patient, I can tell you for 100%  certainly that I do not walk around as if I have marbles in my shoes.

Nor do see everything through goggles, or my hands act like oven mitts...and on and on.

I had the opportunity to speak next, right after this display of ingenious and told the room of about 400 doctors, nurses, and medical professional what they had just witnessed was the worse display about dementia I have ever seen.

You could have heard a pin drop. I went on to say that this exercise at best may show you how some elderly people react. Maybe.

But there isn't one single shred of it that pertains to a dementia patient. How can I be so sure? Cause I am one. Again, you could have heard a pin drop.

This exercise is for lack of a better term, is laziness. Someone, somewhere came up with this, and when they showed it to other non-patient people they just ran with it.

It's wrong. It'd degrading. And it's harmful. This was done like I said in a room full of supposedly very well educated medical people. Yet they sat there and laughed at every move the person with the goggles and oven mitts on did.

I then told the people in the room to pick a book. Any book. Turn to any page and begin to read. Except only read every forth word, and every third paragraph.

Some indeed reached for a book, I gave them a few minutes and asked the ones that did to raise their hands. I then asked them what they had read. Tell us what the story line was.

They obviously couldn't. That is what we patients go through every waken moment of every day.

If we are involved in conversation we hear about every third word. If we are given a set of directions to do, we can only do one, and that's on a good day.

The bottom line is, this side show that many of you have probably seen in the past, is just that. Something that belongs in a circus. To say and claim this is what a patient deals with is absurd.

Please don't let your loved one be a part of such a travesty. I can tell you this with 100% accuracy, the only ones who hold even the slightest bit of credence to this mockery are caregivers or family members.

You will never find one patient who says "Yea, that's what I go through everyday."

You won't cause it isn't. It isn't even close. And anyone involved with such a dramatization should be ashamed.

This as always are just my thoughts on it. But I can tell you this, we, Mp will not stand behind this type of thing. I have been asked in the past to put a word in for what it does.

After I indeed told them what I thought, they of course decided I was not a candidate to endorse this type of thing...and never will be.

Monday, February 17, 2014

Not Everyone is Cut Out for Caregiving

Caregivers at the end of their rope. Wives/Husbands who cease being either and become a caregiver to what can be considered a child at times.

Not many want to hear this, or even think of it. Most want to think this is my husband/wife, Mom/Dad, and I will take care of them come hell or high water.

That is the normal, compassionate thing to do. What I am saying is, listen to the ones who have been doing this for years. The hardships they have endured. The endless struggles they face day in and day out.

I will never forget what a patient endures, simply because I live this disease everyday. But I also see and hear the pain this disease brings to a family.

A wife who for whatever reason just can't do this. A son who must make the decision to walk away from everything and be there for a parent.

All of these are noble jesters. And I could not agree more that we need to be there for the patients.

But lets not kid ourselves. You can compare how some caregivers act to how we are human beings act out in public, compared to how we really are in our homes.

You see a young child throwing a tantrum in a grocery store, and you just know the Mom wants to lay into them, and would if they were home.

That's what happens with some caregivers. Notice I said some. Certainly not all. No one thing is set in stone and caring for a dementia patient certainly has it's moments.

But I want to talk about the caregiver who are just done. They can not take this one more day, one more hour, one more minute. We all know they are out there, common sense tells you that.

But we live in a society that would never hear the words I give up when it comes to caring for your loved one.

And that to me is very, very dangerous. When you first take on this roll as a caregiver, little by little this disease, not the patient, but this disease will wear you down.

You can not avoid it. Dementia has more time on its hands than you do and everyday will progress. To the point, five, ten, even fifteen years has passed and you lost them all.

Why? Because you have no life. When you are indeed a caregiver for a dementia patient, you social life is non-existing. Some will say, "So what, thats what I signed up for"

It's those caregivers who would never admit it, but they blame their loved one for the years that have been taken from them.

Again, to think this doesn't happen is just wishful thinking. There are caregivers who don't take care of their pets, let alone another human being.

There are people who for whatever reason should not be in charge of someones heath, or well being in any way. There are family members who make it a living praying on the patients and trying to get everything they have long before are gone.

I worry so much about this. I have been blessed by the unconditional love of a woman. But some are not so lucky. Dementia doesn't just come into households who have a strong marriage to begin with.

Dementia hits people who couldn't stand one another before this disease came along. Dementia knows no boundaries.

If you are a caregiver, and you simply cannot do this, for whatever reason make arrangements so someone can take over for you. So many times loved ones take this on and have no idea what they are in for, yet they say they will never give up.

That is noble. Perhaps not very well thought out, but noble just the same. My wife and I have sat our kids down and explained to them that there will come a day when she can no longer provide the care needed to take care of me.

That doesn't mean that our daughter takes over. What that means is it is time for me to be placed. I will not be a burden on another family. Period. This is my decision, and my wife agrees.

She knows and has seen from years of running squad, that its not a case of if she can't take care of me, it's a case of when she can no longer take care of me.

We made these decisions together. She didn't sneak around and make any arrangements or say, "Well that's what he says, but I will never place him". She knows. I know.

This is called accepting what is coming. No where is it written that we get to choose what happens in our lives. We are destined to die. Each of us. And one must prepare and be prepared for what is in their future.

"And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also."...John 14:3

Mine just happens to be this disease. We can ignore it, we can say we'll beat it, we can fight it. But it is coming. There is no fix, no cure. Not in my lifetime.

Just do what you can, while you can, and please make plans for what is coming...cause it is coming. To think different is indeed denial...

This is unlike anything, anyone could have ever imagined. And not everyone is cut out for it...

Saturday, February 15, 2014

I am a realist when it comes to being dementia friendly


I am what many consider the black sheep when it comes to bringing Awareness of dementia.

Some will tell you we are making great strides in dementia awareness. I say, "Where?"

I am going into my ninth year of having memory issues, four of them since being diagnosed and from my stand point I see things going backwards instead of forwards.

I see people making all sorts of claims of being dementia free, or dementia friendly.

There is no one who wants to bring awareness to this disease more than I. This is my job now, I do this day in and day out.

Those who tell you we are getting there, I have to wonder where there is? I just went through a string of bad days and when that happens I always get defensive when I read about "dementia awareness" this and "dementia awareness that".

This notion that you can call a business dementia friendly for one reason or another is like shooting pool with a rope. It doesn't work.

Take McDonalds for instance. One of the largest food chains in the history of food chains. To get them to be "dementia aware" would be great.

It's no where near feasible, but it would be great. You see when someone talks about dementia friendly businesses, thats what it is. Talk.

Do you realize what a cost it would be for say McDonalds to even think about implementing dementia friendly franchises?

Even if they could, these franchises are owned and operated individually. It is up to the owner of the franchise to do the training, keep up with the training and see that it is adequate and closely monitored.

Does anyone ever stop and think of the turn over ratio of a McDonalds? Or lets take it a step further.

How about a "dementia friendly" hospital. Again, would be great, just not feasible.

Most of us have a false sense of security of thinking when our loved one has to be admitted to the hospital, everyone that comes into contact with them knows about dementia.

Here's the truth. Your lucky if by some chance your loved one isn't given a medication they are allergic to, let alone being in a "dementia friendly" atmosphere.

There is no way you can get a institution like a hospital to be "dementia friendly". How many times have you witnessed something go wrong in an actual dementia facility where this is all they do, care for dementia patients?

Some will take what I am saying here and turn it completely around. But what I am telling you is to think that any business, or any city can be "dementia friendly, or dementia free" is false hope.

Here is a perfect example. Chances are you, the caregiver/family member have others in your family that you simply cannot get to be on board with the fact the Mom or whoever does indeed have some form of dementia.

We see this all the time. Denial. And that is in your immediate family. Now imagine trying to harness this "dementia free" thing in any business, or city.

I am a realist. And to me this will never be attainable. It just won't. It's good to talk about it. It's good to claim places are "dementia friendly", but in the long run the knowledge of dementia is no better than the person who is teaching or bringing their employees to understand about the disease.

I can go and talk to any business owners. Tell them exactly what to do, what not to do for dementia patients. And all that amounts to is a public service announcement of sorts.

It certainly doesn't make the place I am talking to or speaking at "dementia friendly". Who I ask is doing this training? Who is following up on the training to see that is is being implemented on a daly basis?

We all want this disease to be understood. Especially from a patients stand point. It is to my advantage to know where ever I go they understand what dementia is.

The problem is, everywhere I go no one does. That is the reality. And that is why I am a realist.

Will there someday be dementia friendly businesses, or cities? I don't think so. But I can tell you this without hesitation. It is going to take more than calling a place "dementia friendly" because they buy into what ever you are selling...and that is the cold, hard truth...

I have to say that taking this stance is not popular. But I never was good at popularity contests.

Friday, February 14, 2014

Take Me Home

"Take me home"...caregivers and family members often hear this from their loved one.

They can be sitting in their favorite chair, be in their own bed and you can still hear, "I want to go home".

Home for some of these individuals isn't what one would expect. They can indeed be talking about the home they first remember. 

Where they were raised as a child. We have to remember this disease robs us of our earliest memories first, then the long term memories.

So when they speak of "home", you may never understand where they are actually talking about.

In my humble opinion this is where our infamous "fiblets" come into play. Tell them anything that will calm them down. Tell them that you will take them home in just a bit.

Tell them anything, because in the long run, it doesn't matter. At this stage of the disease, they don't have the ability to realize you told them you were indeed taking them home, and didn't.

Will they repeat this over and over? You bet. But this is where the patience of job comes in, and some very good convincing that you will indeed take them home.

Think of it this way, if you could take them to where ever it is they think "home" is, they will still tell you they want to go home.

It's a no win situation. It's a disease of the brain.

Are they safe?

Are they content?

Are they pain free?

These are the only things that really matter in the end...and telling them what they want to hear. No matter how absurd it may sound to others, or how many times you have to repeat it...

Thursday, February 13, 2014

A Couple Bad Days

I have had a couple of bad days here. I catch myself wondering why? Then of course it hits me.

The thing with me and this disease, I know when I am having a bad day, know if from the moment I wake up. It throws everything off.

The routine goes right out the window. There are so many things I just can't deal with. When Phyllis is trying to tell me something, I just sit there and agree, or disagree, not knowing really what is being said.

Trying to follow a conversation on a good day is rough, but when one is having a bad day its just next to impossible.

I suppose it's like waking up after surgery. The way one feels, still in the anesthesia. You see things, you hear things, but you can't figure out anything that is going on.

When you go through these times there isn't a thing you can do about it. Just ride it out, and hope that you come through the other side.

I try to tell people whats its like, what I experience with these, because many times there loved ones are far worse off. And there is no coming back. It's one big blur.

Try to imagine the how it feels, how you react after surgery, or any meds you may have been on that feel as if you are having an out of body experience.

When I make a post like this I never do this for people to think "Oh, poor Rick" matter of fact there are many who would love to just have the struggles I have.

I try to post to put my thoughts down as soon as I can, but even then I find myself wandering off on something. I guess what I am wanting so say is there is no fixing this.

What is going on with me, I just have to deal with. I don't do very well or course, no one does. But that is what you have to do. One day things will get bad and never get better.

That is what you worry about. Is it today, next week, next month? It's constantly on my mind. And that is because of the disease also.

All our admins know that when I go through these periods they have to watch my posts, just as they would anyone else's. I try to post what I am thinking and somehow it gets or ends up something else.

I want you to know that things are fine. I am fumbling along here. I think it may be time for a med change, course i always think that when this happens.

I try to convince myself if I was on something stronger, that would help. It wouldn't. That's denial. There is no fix, I need to practice what I preach.

I hate this disease, and everything that goes along with it.

Tuesday, February 11, 2014

Where is the Manual for Dementia?



Where is the manual? There's always a manual. The one you take out, look over before putting together that swing set, bar-b-q grille, or trampoline.

There has to be an instruction manual for dementia caregiving. Someone has had to write one. There are over 35 million people in the world who suffer with this disease, and over 7 million more diagnosed each year.

So, don't tell me there isn't a manual. There are so many questions that new caregivers have. So many questions that patients have.

In fact, there has to be a manual for patients as well. I'm going to call the Alzheimer Association. They have to have a manual.

A manual from the time someone is diagnosed, what to do, what to get, what you will need. How to cope with things that will arise. And, what will arise, anyways?

Sadly, I have searched and called everyone I can think of and there is no manual. If you want to program you new phone, there's a manual. If you want to learn how to eat with chop sticks, there's a manual.

But when you and your loved one are given this terminally ill diagnosis, one with no cure in sight, one where there is nothing to slow the progression, and one you will surly die from, there is no manual.

Why is that? Why is it that you can go on the internet and find all kinds of things on the web about dementia, but some contradict the other. Some tell you don't drink or eat out of things made of aluminum, then other sites will tell you aluminum has nothing to do with getting dementia.

Why is that? There is no gold standard. There are no set of do's and don't that tell you exactly how to care for your love one.

You know why there isn't? Cause everyone is different who is diagnosed, cause the doctor's who diagnosis you isn't sure if they have the diagnosis right. This is why they always say "You have dementia, probably of the Alzheimer type".

There is not one thing that is constant about this disease, except the fact is you will never, ever really understand what it is all about. Not now. Perhaps someday, but were not even close now.

I get so upset when I read about dementia friendly businesses, or better yet, dementia friendly cities.

Here's the truth. You can't even get family members to agree on what course of action to take when a loved one is diagnosed. How they are to be treated, most are in denial, and you can't get anyone to listen simply because they are not living it.

And then people expect to have dementia friendly businesses, or cities? This is wishful thinking. But the reality is we are so far behind the eight ball, when it comes to awareness and getting Support for caregivers and patients.

Lets work on that. Something that can be done. One person at a time. One family at a time. I wish someone would tell me just what city it is they are talking about when you hear "dementia friendly cities".

I am all for it, but it's just not possible. Can you imagine say Wal-mart being classified as a "dementia friendly" business? They are constantly hiring and firing employees, 90% of their workforce are part time.

Can you imagine what it would cost to implement such a thing. For all their employees to be "dementia friendly"? How about Lowe's. Why not Target?

Or how about Dallas, Texas being a "dementia friendly" city? What I am trying to get at is why don't we concentrate on things that can be done. Instead of trying to re-invent the wheel here?

There is no one in a 500 mile radius of me that does more to bring dementia awareness than Phyllis June Phelps and I have. And we haven't scratched the surface.

Everywhere we have been, there is a different take on this disease. Like I said, you can't get three people to agree on some things, let alone an entire city.

I am not against dementia awareness. Anyone who knows me, knows this is true. But when I hear of such things, things that are not in any way feasible to do, it makes me angry.

Let's take this slow. Let's start with the people around us. Let's put our minds and hearts together and help each other. Just like we do here on MP...

I would love to see dementia friendly cities. I would also love to hit the lottery. Some really, really involved professional type people on the web are talking about this.

Yet, I have not heard how this would, or could be done. Training of course. And it would have to constant training because of the turnover you have in any business.

Then comes the kicker. Where is the money going to come from? Who is going to train these people? And yes, where is the manual they have to train these people with.

There's always a manual...

Monday, February 10, 2014

Should support groups separate patients and caregivers?



Separating patients and caregivers in support groups. Does this work? Are you in favor of it?

I see so many different times the "professionals" say this is the only way to actually give support.

When you mix the two, the caregiver/family member will not ask the tough questions that need to be asked because of a patient sitting there.

Having a group with only caregivers? Or one with only patients? The Alzheimer Association does this. Their support group is geared to the caregiver.

Least it is here, at our local health and services dept. where they are held. They also have a curriculum they must go by, designed by the Alzheimer Association.

Let me tell you this, all you need to do is offer some refreshments and a place for support groups to be held and they will run themselves. There is no need to have a curriculum.

But if you are in a group that separates the two, all of this is fine. If it works for you. My question is, if separating the two groups is indeed beneficial, then how come there has been little to know changes in the last ten years when it comes to support for the caregiver, or the patient, for that matter.

I remember when I started Mp, I as told by a few "experts" that having both patients and caregivers on a forum like this would not work.

My response was of course, why not? How can caregivers lean to be better caregivers without the input of patients? How can patients live a better, productive life with this disease when they don't communicate to the caregiver what is needed to be done for them?

There are many groups who do not allow the two to be together. I think this is a huge mistake. There are some organizations that will not allow you to be part of their group unless you are indeed a certain age.

Again, this is absurd, but happens. I have attended group meetings where only caregivers were present and there was a tension. A mixed feeling of emotions.

They looked at me as a patient. Compared me to their loved. Something you simply cannot do. I am me. I am not this disease. This disease does not define me.

I never want to be remember as the guy with the dementia dog. I want people to know that even to this day I can string together a sentence to two. I can have an individual thought.

I can tell you exactly what it is like to live with dementia. Now how can any caregiver do that. How can any caregiver have an answer to why their loved one does the things they do?

That part of this disease can only be told by the patient. Not the doctor, not the health care worker, not the social worker, not any one but a patient.

Yet there are those who want to separate the two, because they may be some tough questions asked.

Let me tell you this, there is nothing tougher than living with this disease. There is no question that I have ever gotten that made me think I wish that would have not been asked.

Every person comes to this disease with a different approach, there are no two patients who are alike. Some may not be able to handle some questions that may be posed.

But should that keep everyone from working together and supporting one another as patients, caregivers, family members, or advocates?

Those who do separate the groups, and if it works for you than that is a good thing. However, you are missing out on a golden opportunity that is limited at best.

I will not be able to do what I do today much longer. There are days I would not be any good to any group. But there are days I can tell caregivers something that they will take home with them, that will indeed change their life.

It bothers me to see the two groups separated. Mostly because I know what is lost. What patients can give to caregivers and what caregivers can give to patients.

We don't separate the two here, and never will. We learn from each other. We are all in this together. We will support one another, regardless of what side of this terrible disease you are on.

Together. As it should be. As it will be. "While I Still Can..."

Take Care of Yourself at All Costs

"If you don't take care of you, no one else will." What does this mean? We should eat right, exercise, make healthy choices and on and on.

This takes on a whole new meaning in the world of caregiving for a dementia patient. These "Care Warriors" as we call them are in constant "gotta get it done" mode.

There are no breaks to hit the local gym. There are no time outs for Zen, for taking a day just for them.

They are in a constant battle with the disease. It's a 24hrs a day, 7 days a week battle. And for what?

To try to give the best care they possibly can to their loved one. But, if you don't take care of yourself, no one else will.

This is what you could call a catch 22. You can leave your loved one for a few hours, but who do you leave them with?

It has to be someone who understands this disease. Understands your loved one. Understands their fears, the likes, their dis-likes.

Just having a family member drop by for a few hours isn't going to work. Even the best laid plan could fall apart in minutes.

The patient may not recognize who is going to be caring for them for this short period of time. They may not be responsive to them, they could even be afraid of them.

How is one to know? When you have a patient who is nonverbal, how are you to know they are indeed alright to be left with someone else?

This is a constant uphill battle that is never ending for the caregiver and families of a dementia patient.

When we say "Take care of yourself, cause no one else will", it is much harder than just doing that very thing.

Caring for a dementia patient is unlike any other disease. Especially in the later stage of dementia. The slightest thing can set them off. The stress of this could last for hours, or days.

What's the answer? That is the million dollar question. What do you do? Yes, you have to take care of yourself. So remove yourself from the emotions of leaving your loved one with someone else, perhaps.

See how that works for you. If you think you were stressed before, try taking a day for yourself and not worrying about your loved one. It won't work.

This is the very reason the death rate amongst caregivers with dementia is so high. It is indeed a disease that effects everyone around the patient.

Even the best of home heath nurses cannot fix this. Your love one has a disease of the brain, try to explain to them you need some time to recharge your batteries.

I wish I had the answer. My wife will deal with this situation one day. Every family member/caregiver will. The answer in my mind is, you do need to take care of yourself.

Period. We patients are no good to anyone if we are left alone because our spouse or primary caregiver has died.

What happens when you leave your loved one alone, is something you will just have to deal with. They may be scared, they may be stressed, they may be unruly to whoever is there with them.

But the alternative of you never taking care of yourself is one that will effect the patent, and of course you in the long run.

Dementia patients who primary caregiver has died will most likely be placed in a facility. Perhaps this is what you should be thinking about, planing ahead for.

You can die from caregiving. It happens all too often. Simply because the "Care Warriors" are just that. "Care Warriors". They need to take care of themselves.

No matter what the cost..."While They Still Can..."

Friday, February 7, 2014

Do what you can while you still can

"I want my loved one back." How many times have we heard this? How many times have we said this?

They too want to be back, have things the way they used to be. I don't know when it happens. And it has to be different with every patient, but there is a day that this no longer applies.

When that day comes, everything changes. It already has changed from the start of the diagnosis. But when the day comes they no longer recognize you, it is pretty apparent that they no longer know where they are, who they are, and their need for things to go back to normal is gone.

I have said many times I think I am in the mid-stage of this disease. I don't know this, no one does. But I still can function. I can still most of the time carry on a conversation, and even drive. Contrary to what people who never met me who think I should not be driving.

I drive about once a week. Always local, within ten miles at most. And I have never gotten lost. This is because I have lived in this community my entire life.

I do however forget where I was going at times, and what I was wanting to do, but this in no way hinders my ability to drive.

Many times people want to lump all patients in a group. If you have dementia you can't possibly drive. That is not only wrong, but it indeed is a form of discrimination.

There is not in Ohio a special test I should take to be able to drive. I take the same one everyone else does. To put us all in one category and say, these people cannot drive cause they were diagnosed with dementia cannot be done.

Many times I have been told that no one would know I have dementia if I didn't tell them. Yet, by some your ability to drive ceases upon diagnosis.

It is up to the family/caregivers to make these decisions. If indeed the patient can not. I think I will well know in advance I should not be driving, but again, that is what I think now, today.

We do lose our cognitive abilities. But I know what a stop sign means. I know what a speed limit sign means. I know when I can turn right at a red light...

All these things and many more are in my long term memory. This of course will change in time.

But don't deprive any patient of things they can still do. There will be day when you want your loved one back. And there will be a day when we don't even know who we are, let alone anyone else.

Take what time you have and make the best of it. We were told to do anything and everything we wanted to do. Now. Do not hesitate. We were told this by the Alzheimer Association.

They know there is no time table on how fast this disease will progress. So do what you can, while you can.

And if we patients mess up, and do something we should not have, as long as no one was hurt, we didn't hurt ourselves, does it really matter?

We don't do things to purposely get under our loved ones skins. We do things cause we have a brain disease. And some of us are far worse off than others. But we all in the end will reach our final stage.

Don't wait till then, don't let today get away with you. Do what you can with your loved one. "While They Still Can..."

Wednesday, February 5, 2014

Dementia, probably the Alzheimer's type?

"You have dementia. Probably of the Alzheimer type." Does that ring a bell? You will hear many patients say this. "I have dementia, probably of the Alzheimer type."

Why? because that has been drilled into their head since their diagnosis. I never say that, that I have dementia, probably of the Alzheimer type, yet to some they wear that saying like a badge of courage. And on top of that, now we now have "genetic testing".

My take on any genetic testing is whoey. I suppose there is some real good testing that comes from this. Maybe even some data. But to use it to predict someone will get dementia? Whoey.

My take is that is it too early yet. How can someone, anyone tell you that you are more likely to get dementia, of whatever form, yet they know so little about the disease as it is???

As always these are just my thoughts. Many will disagree and that is fine. But as a patient, I can tell you unequivocally that not one doctor I have seen in the last five or six years has any answers for any part of this disease.

When I hear about genetic testing for dementia, I just think that it's a educational guess at best.

Here's one thing I base my thinking on. No one, not one person dating back as far as we can trace my heritage has had or ever dealt with dementia.

Now does that mean my great-great-great-great granddad didn't have dementia or some form of it? Of course not. What it means is all the data they have they only started collecting say 20 or 30 years or so ago.

Yet, of course I have Dementia. Does that mean my son is going to get dementia. No. What it means at best, is he stands a greater chance than say my wives nieces do.

To me their is way to much testing on things that simply don't matter. Genetic testing in my opinion is one.

Getting some sort of tests that claim you have a better chance of getting dementia is just borrowing sorrow.

Again, the only way they can even determine 100% accuracy if I even have dementia is by an autopsy of the brain.

Yet, someone, somewhere comes up with a genetic testing that can tell you your probably of getting dementia.

I can do that. There is a 50% chance you will, and a 50% chance you won't. I suppose if this horrible disease runs in your family, then your odds are increased dramatically.

But to say "You have a very good chance of being diagnosed with dementia say in the next ten or twenty years" is to me absurd.

I have a very good chance of hitting the lottery in the next ten years. Or getting hit by a bus, or drowning.

Any one can predict anything. It certainly doesn't make it so. I just don't think its healthy for anyone to worry about getting something, in this case dementia, when no one knows.

It's the brain. The most complex organ in the body. If someone tells you they can give you a estimation of if you will get this disease, then they are indeed psychic. Because no one knows about this disease today. Let alone what will happen to you or anyone else in the next 20 years.

To me it's like predicting weather. "There's a 60% chance of rain all next week." So. There's a 40% chance that it won't rain at all.

Again this is just my take on genetic testing. I don't agree with it. I had dementia for at least five years before being diagnosed. And then it was "You have MCI/Early On-Set Dementia, probably of the Alzheimer type".

And that came from the leading Neurologists at The Ohio State Medical Center. He was not just some doctor. He was the head of the cognitive unit.

They always say "probably", cause they don't know. If they were certain does anyone think for a minute they would include the word "probably". Probably not.

But yet pay attention to how many patience say "probably" of the Alzheimer type. Especially those who are or do speaking engagements. Or try to bring Awareness to this disease.

For whatever reason they all say "probably". It's like code or something. Today in another post I used the word "probably" just to see if anyone would catch it.

Never once have you heard me say, here or in any of my speaking engagements that I have dementia, probably of the Alzheimer type. I think just saying that makes you sound like either you or your doctor don't know what you are talking about.

So when I say I have reservations about genetic testing, I have reason to be. And I have dementia. Period.




My posts have a process

I always have within reach of me a legal pad and my iPhone to use as a recorder, when doing any posts I may want to put here.

It takes on average about an hour, sometimes longer to get my thoughts together, put them on paper, record them, and then finally type them here.

There is a process to this for me. I just don't sit here and start typing. Many times I have been asked, "How do you write so eloquently?"

First of all, I don't think for a second its eloquent. Being in law enforcement and EMS for many years I long ago learned how to do a report, and tell a story.

Paint a picture if you will. We were taught in the beginning that very important people will read your reports. Some reports could literally put them in prison for life.

So you must realize whoever reads your report wasn't there. And the only idea they have about what happened is your account of what transpired.

A jury is a perfect example. When I testified in front of a grand jury or even petit jury I always turned my seat toward them, and looked at every one of them to let them know I was talking to them.

I had to tell a story. It was my job to put them at the scene of the crime. The same rings true here for me.

In order to get anyone to understand what I am trying to explain I have to paint them a picture. Put them there.

Sometimes it works. Sometimes not so much. But I wanted to explain to some of you who wonder how I can just post some of my comments, as though I just sit here and start typing.

There is a process. I used to do daily videos and post here. For maybe a year I did those. In the beginning it was for me. To see my progression, or whatever.

One day I posted one, and the rest is or was history. We have close to two hundred of my video's compiled now. Some were very good if I say so myself. Some I couldn't even make heads or tails of myself after watching.

It got so bad that in the end I wouldn't even watch them. I would stray off topic, forget what I was even doing the video for and things like that.

These videos are however used in some facilities for CEU's or as a training tool. Not because I did them, but because back then no one did them.

Now, through the magic of the internet there are some other patients doing videos and I couldn't be happier this is happening.

I wanted to explain how my posts come about. I sometimes have two or three that I have done and only post one a day. That proved not to work so well cause I would indeed forget about the ones I had done and was going to post.

So if anyone says, "How can Rick write them posts he does?" This explains that to you. Or at least it was my intention...lol

Tuesday, February 4, 2014

The brain affects everything

I think a good thing to keep in mind is anything can happen with dementia. All things in time just quit working.

For whatever reason. Some cannot eat cause they simply forgot how to swallow. Some can't walk, again, they have forgotten how to.

Some won't be able to talk. Make audible sounds but nothing you can understand. All these and many more things can happen

They are all controlled by the brain. And anything that is controlled by the brain, can and most likely will be effected.

This is why some like me for example can still somewhat carry on a conversation of sorts. While others have no idea what is even being said.

However there are times I have no idea also what is being said. With this disease nothing is constant or you can't know what is going to happen at any given time or day.

The brain is the most complex organ in the body, and when it is indeed diseased, anything can be effected.

Monday, February 3, 2014

The disease changes everything



I could very well become a recluse. This weather has a lot to do with it. The "Sundowners" and all.

It's a chore to get me to go anywhere. We have to go the store tonight and Phyllis June said, "I'll stop by after work and get you", meaning "You need to get out of this house".

I really dislike going to the store. Sam, my service dog knows it, senses it. He can tell when I am uneasy about anything. He was trained to do this and does it very well.

That puts him on high alert, which puts me on high alert as well. He is never out of eye sight of me, but when we are out in public his shoulder is always in contact with my left leg.

He wears a red service vest which says, "Working Service Dog. Do Not Pet". One would think people would adhere to this. They don't.

And it isn't always the kids. We were at a mall recently and walking through the food court. There at a table sat a security guard and two girls.

He thought it would be cute to call the dog. He was mistaken. Sam isn't a mean dog. He does however react to my demeanor.

The last thing anyone should do, especially a security guard is call a working service dog. One would think.

I walked over to the table where he was sitting, quietly said "Did you need anything?" I of course knew he didn't, he was just trying to impress the girls sitting there.

Sam of course was looking at him like a roast beef sandwich. Again, he knows by the tone of my voice I was upset. I confronted this guy, just to prove a point.

This happens, not quite to that extent, but it happens when we are out anywhere. The point I am trying to make, want to or not we patients do draw attention to ourselves one way or the other at times.

It was wrong of me to confront this guy, but he was one of a whole host of people who one would think has never seen a service dog.

When you are out anywhere with a dementia patient remember, they are most likely on pins and needles. Not about anything particular. Just the fact they are out of there element.

Their routine has been altered just by being somewhere they normally are not. A store, church, the park, the doctor's office, the grocery store.

As a patient, anytime I am out, I have a sense of urgency. The urgency to get back home where I belong.

As I have said before, I don't pay much attention to the different "stages" of this disease. That being said I am sure I am in the mid-stage most days.

Not "stage 3" or "stage 4", just the mid stage of this. I consider there to be three stages in my own mind. The beginning, the mid stage, and of course the end stage.

Some are worse, some are better. That is why I don't give much credence to "stages". You're loved one can be as calm as the driven snow, but just take them for a nice country ride, something they once enjoyed and that can be terrifying to them.

Try to remember, what once was, is no more. Things have changed, and nothing you do, or say is going to change that. Doing what a person once loved to do seems innocent enough.

When deep down, or right above the surface inside they are bout to burst with stress, nerves, and chaos ensues.

It's hard for the caregiver to understand this. The person they love, doing things with them they know they once enjoyed so much...but everything has changed.

Nothing is as it once was. From their eating habits, the their demeanor, to they way they lash out at you for no apparent reason.

There is a reason the patients do all of these things. And it's right there in front of everyone one of us.

It's the disease. Their brain has a disease. And as bad as it is today, this could very well be the best day they have. Ever...no one knows or can predict these things.

Deal with the here and now. Not what might happen, or what could happen, or even what has happened. Yesterday is just that. Yesterday. You may have lost many a battle with them yesterday.

But today you start a new. Deal with your successes with them. Will there be mistakes? Of course. Many. But again dwell on what worked, and don't get upset if it doesn't ever work again.

We need love, understanding and compassion. Let us know we are not alone. And if we do something that offends you, know it was not on purpose. If we could change things we could.

Just a bit of reassurance goes long way with this disease. I need to know most that I will never be alone. Don't tell me it will be ok. Nothing about this disease is ok, or every will be.

Am I safe?

Am I content?

Am I pain free?

If you can say yes to these three simple questions you are doing everything you can do for them.

And that is what everyone wants. Everyone...

Sunday, February 2, 2014

We don't sugar coat

Something has been brought up on a couple of posts here lately and I wanted to expand on it.

Here on Memory People™ you will hear the truth. We don't sugar coat anything. Some understand this, some have left on account of it.

But it is truly the only way to run a Support Group. We all know how well "fiblets" work when dealing with dementia patients.

But "fiblets" does not work when handing out advice or suggestions here to other members. I used to get messages from past members who say that I am too blunt, to confrontational, to up front about things.

I can tell you this, everyone of these who have left, had an agenda. It's one thing to not like my approach when it comes to Support, it's another to think we are going to do it your way cause it seems right to you.

I never get confrontational. That simply isn't true. Now, someone tell things about me that aren't true which has happened many, many times in the past and will continue, when this happens I am confrontational.

Someone says things about Mp that simply aren't true, again I will get confrontational. What we do here, we do for everyone. We don't come up with something cause it sounds good to try.

We work hard everyday behind the scenes to make your experience here on Mp the very best it can be. We want to get you the information you need, not what we think you might want to hear.

When I tell someone of my struggles they are sometimes graphic. But that's the disease. Telling someone dementia is just an inconvenience would not help any of you and it would be wrong.

Telling you things will get better, is what most would like to hear. You won't hear it here, cause things will not get better.

As bad as it is today, this could be the very best day of my life, every. No one knows this and to imply this one would have to see into the future and we don't have many psychics here that I know of.

So know this we are all respectful here. We have different opinions, thats what makes the world go round. But we do it in a dignified manner with respect for one another.

Some posts indeed are hard to read. I suggest to those caregivers and even patients who can't really deal with those to just scroll by them. Instead of trying to make someones day by telling them something they want to hear, instead of what is actually going to happen.

We are dealing with a disease that is terminal, there is no cure, and there is nothing to date that will slow the progression. We will die.

Why anyone would be taken aback by this is beyond me. We all are going to die. I sometimes think I am ahead of the game knowing my time is limited.

I see things, that others just pass by. I know the meaning of hearing birds chirp in the mornings. I know what it means to hear the babbling of the creek by the camper we have.

And I stare into the campfire at night, knowing I have done my very best to help someone in need. I do this every night. If I am in a state of mind that I can't do this, this is why we have the Admins we do.

They too know what is expected here. And everyone agrees with how we do things here. If not it just would't work.

But its important to me we are making progress. We are changing lives one person at a time. And who can ask for anything for more?

I am thankful to be a part of this thing we call Memory People™. I am and always will be thankful for what we have here, what we do here, and how we do it...