Wednesday, August 27, 2014

With Dementia it will never be Ok



When you first join Mp, or even if you have been here since the beginning, some of our posts, discussions, etc. can be overwhelming. As a patient, family member, or caregiver it can be difficult to read some comments.
I think this has to do with the reality of the disease. We never sugar coat anything here. Dementia is not something one can sugar coat.
When someone tells me "It will be ok..." I always say, "No it won't. There is nothing about this disease that will ever be ok."
And that is the truth. If someone around you or you read somewhere that the progression of this disease can be slowed by anything, that is false.
If you hear, or read that there is medication that will indeed stop the symptoms of this disease, that too is false.
There is medication that may lesson the symptoms, but there is no medication that will slow the progression, or stop the symptoms. Some medications may lesson the symptoms, but there is no mediation that will stop the symptoms.
With a few clicks of your mouse, you can find all kinds of information about dementia on the internet. Everything posted on the internet about dementia is certainly not correct.
It is up to you to decipher what is false, and what is not. Here, at Mp you do not have to do that. We don't allow false hope. We do allow Hope of course.
Take a cure for instance. You can find numerous sites on the internet that talk about a cure for dementia. And I believe wholeheartedly there will be a cure one day.
The problem is that day is not here. That day is not even close. There will not be a cure in my lifetime, I have made peace with that long ago.
If there were a cure found today, it would take years, if not decades to get through the FDA and end up on your Doctor's prescription pad.
And like cancer, whatever cure is found will be astronomical to even get. If it comes in some sort of treatment, those treatments will run tens of thousands of dollars.
And we all know what a debacle our health care system is right now. So will it be covered under your current plan? Who knows? No one knows, that's who.
These are just a couple of things here at Mp that we talk about that is very difficult to read. Everyone wants a cure. Most organizations, take the Alzheimer Association for example are about research.
They are 90% about research, finding a cure, and perhaps 10% about support. Which is fine. Many are like this. Put all their resources, i.e.: funding, donations, monies raised from their walks into research and administrative costs.
We simply don't do that. We are 100% about Support. We want to help you get through today, this evening, this afternoon, or even this morning.
When you have this disease, truth is you want to just get through today. Instead of worrying or wondering what is coming next week, next month or next year.
Take one day at a time. Everyone knows the horror that goes with this disease. The simple truth is there are medications that may lesson the symptoms, but there is nothing that will slow the progression or cure this disease as of right now.
And of course this is difficult to read about. Of course when you read some of our posts they are devastating. Why? Because we deal in reality. We deal in the here and now.
To think you are in the midst of placing your loved one in a facility and your caregiving roll stops...it doesn't. That's when it begins. You know not only worry about how your loved one is reacting the their new surroundings, but you have to constantly worry and check that the care they are getting is what they deserve.
There is not one good thing about this disease. There just isn't. You will have days, or hours, even minutes where your loved one may be "normal". But they are fleeting moments and the occur less and less as this disease progresses.
Be with your loved one. Do what you can to make them, Safe, Content, and Pain Free.
And if you come to a post here on Mp, that is just too hard to read, because of the content, or what that member is going through, that is when you need to tell them you are here for them.
You understand what they are going through, you are walking the same road with them. You care, your thoughts and prayers are with them. Just anything to let that person know they are not alone.
Sharing our experiences is how we learn here. Not to do so and we become just another FB site. I have always said that will not happen here.
What we do is too important to become just another FB page. We are much more than that, but until we get the funding to get off of FB and get our own web page, we have to put up with the way they do things.
Setting up our own web page has been a priority of ours for a long time now. It will take thousands of dollars to make this happen, and thousands more to keep it running.
We have to get a web master, we have to have our own servers, and on and on. For now, this is the forum we have and have to deal with.
Just know this, everything you read here, as difficult as it is, is honest, and truthful. You won't get someone just posting about this or that cause it works for them.
We don't allow that. What we do is Support. We don't promote any other sites, or products. We are no ones personal billboard. We do Support one another, and we do it better than anyone, anywhere on the internet.
And once we start our local support groups in a city near you, these will be ran the very same way we bring Support here. No fluff, no sugar coating, no false hope. That doesn't do anyone any good.
The posts we have here are sometimes difficult. But that is the reality of the disease. To tell someone it will be "ok", is the easy way out. It won't be "ok", nothing about this dementia is "ok", and it never will be...

Agitation and medications

When your loved one becomes aggressive, either verbally, or physically, what do you do?
You could try correcting them. Course this will never work. You could try redirecting them to another subject, etc.
The thing is you are not going to "fix" this. You never know when a patient is going to become abusive, if it will last, and how bad it will get.
The only thing you really can do, is the one thing most don't want to hear. And that is to medically sedate your love one.
Now when you think of medically sedating someone your first thought is probably of the movie, "One flew over the koo-koo's nest."
That's not what you are trying to attain. You don't want them to be in a zombie like state. That is never the goal. The goal is to get them on medication that will lesson these symptoms of aggression.
Combat anxiety, depression, loneliness and many more emotions that go along with dementia. It can take weeks to get the right dose and the right medication that will help your loved one.
Or you may get lucky and the first drug they try will work. You don't want them medicated to the point they can't function. I am on many different medications for anxiety, depression, and stress.
I would not be able to function daily without these. I don't see one bit of difference in myself. I don't feel drugged, nor do I feel any different at all.
But the people around me can tell. My wife can tell. And I of course can tell when I forget my meds.
The goal is to find a medium where you can function as a human being, but still have the proper medication and the proper dose that will keep your emotions in check.
Even with my meds I have bad days. We all do, and we always will. But if your loved one has anger issues you have to deal with them, cause they will get worse.
Verbal abuse leads to physical abuse. Almost always. Don't let this happen. You and your loved one needs to get through some very rough times and if evertime you suggest something like taking a bath, it becomes world war three, verbal assaults begin and even physical violence can occur you need to see their doctor and get them some help.
These people need to be medicated. That is the key. You can't wish this away. There is no magic pill...there is medication that will help. Nothing will stop the emotions completely. They stem from the brain, which is diseased.

Saturday, August 23, 2014

No Ice Buckets, please donate

I propose a new challenge. The "No Ice Bucket" challenge. It's very simple. Go to the link below, and with a few clicks of your mouse you can support a worth while organization, one that I am very proud to be a part of.

Proceeds will go to starting up local Support & Awareness Groups all across America.

Not only will you have a group of eight to ten individuals who can share their experiences with dementia, they will also have access to video conferencing to others all over the world.

So take a few seconds, give what you can. We are changing lives, one person at a time...
To support Memory People, Inc. and help change lives affected by dementia, please visit ~


http://tinyurl.com/oa2gacw

Friday, August 22, 2014

The hardest thing is knowing you are losing your abilities

It's friday. I know it's friday because just like any other day I have looked to see what day it is about five times now.
I am thankful though, there will come a day when I am told what day it is and won't have the cognitive ability to have any idea about what friday, the word even means.
The hardest thing about this disease for me is that you are well aware of what is going on. Well aware that you are losing more and more abilities to do things all the time.
One wonders when something is no longer able to be done, will you ever be able to do the things you once could again?
The simplest of things can set me into a tail spin. Just the phone ringing. I don't answer it unless it's my wife, our daughter, and a couple other people I know.
Talking on the phone is stressful when you have dementia. I would guess this to be true for all patients. You have to mentally see the person you are talking to, and try to figure out who they are, what they want, and what to say.
Those not effected by dementia answer the phone without even thinking about what it takes to talk on the phone. It's second nature.
Nothing about dementia is second nature. What I used to do without even thinking about it, now I can hardly do when concentrating on it.
I feel so bad for our caregivers. They do their very best to understand this disease and what it is doing to their loved one, when in reality, it's difficult for the patient to explain what is going on.
And in time impossible for them to communicate what is happening to them. Time is my enemy. It's more than just words in a song, it is indeed the very thing we go through day in a day out.
Every night I go to bed, I lay there wondering will tomorrow be the day I forget everything. Will tomorrow be better, or worse? Will I go into the dark place of not knowing who anyone around me is?
No one can ever understand the horror one goes through with this disease. It's the horror of living with it daily, and the horror of the unknown.
It's friday. I know. But to me, it could be any day of the week. For now all my days run together. There is not one day I look forward to. I am just glad to know right now, it's friday...

Tuesday, August 19, 2014

The Value of Support

The value of support? What would that be? What would one pay to have support say, 24/7, 365 days a year?
First off, where would one find it? Most generally you find a local support group in you area that meet once a month.
Hopefully it's within driving distance, and hopefully you are even able to go, leaving your loved one with someone else for a couple of hours.
We have of course the Alzheimer's Association. Who's main objective is fund raising. Funds which are used almost 100% of the time for research.
That is what the Alzheimer Association does. Funding for research. Take Us Against Alzheimer's, again they raise funds through donations for research.
Any other organized group that you can think of that deals with dementia, uses funds they raise for research.
And I will be the first to say we certainly need research. I will also be the first to say most of the monies that are given to say the AA, is used for Administration Fees.
Wages, the many conferences they put on. Hotel rooms, paying for speakers at their events, and also some is spent on support groups.
But, it's not what they do. They nor any other organization is all about support and awareness. Except of course for us.
Memory People™ is about Support & Awareness. It's the only thing we are about. That in itself makes us unique. We don't sponsor any products, we don't endorse any, we don't do advertising, we don't do "you scratch my back, I'll scratch yours".
We don't need to. You see, support is the most important thing there is when it comes to dementia. Yet, it is rarely done. Least of the way we do it.
You will find a couple of other internet groups that have tried to do what we do here. They have spin off groups like we do, they also have video's like I have done for the past four years.
All of this is fine. There's plenty of dementia to go around. But what we have here is special.
We deal in the here and now. What we offer here is to give you the support you need to get through today, tonight, right now.
We keep on topic on Mp. We don't allow posts about coconut oil as a way of slowing the progression, we don't allow people who claim that they have a cure or have heard of one on the latest Dr. Oz show.
We don't deal in False Hope. What we give is Hope. But real Hope. Not something that may happen in ten or twenty years. But what we offer you can use today, tomorrow, and from here on out by just being a member here.
So...as I was saying, what would that kind of support be worth? The value of getting support 24/7, anytime, about anything?
Most would say priceless. You can't put a dollar figure on helping your fellow man. And what we have done here time and time again is to change lives.
You will read over and over of those who's life we have completely turned around because of the support they receive here. And there are the ones who say, "I just wish I had found Mp years ago, when Mom was alive."
Our track record speaks for itself. If it isn't broke, don't fix it. But what can we do to improve our mission?
That is where our local support groups come into play. Everything from setting these up all across America, to the little things like sending out Mp Support Cards for our members at no cost.
All of this costs money. The only free thing about this is that Facebook itself is free. Here are just a few things that we do that most never even think of. Most think Mp just happens.
I have a video conferencing package that I pay for so we can do just that, video conferencing about Mp. Leeanne and I meet almost daily on these calls which last anywhere from an hour to sometimes three.
And all of this is done on a video conferencing package that only works about half of the time. We have to use it, because it is all we can afford. There are many other video conferencing packages out there, but again, it takes money.
We use what I can afford to pay for out of my own pocket. Both Leeanne and I have added data plans to our cell phones so we can do what needs to be done to keep Mp running, keep in touch with one another and conduct Mp business.
My cell runs me about $150 a month with the data plan I must use to have what is needed to keep in touch with others. And I have to have full access to the internet, not just a few gigabytes here and there.
That alone runs us about $80 a month. I am not telling you these figures for sympathy, or compassion. I am merely trying to point out what we have done for over four years has come from our own money we have used to do what we have accomplished here.
The website we have for Mp, and the book to get published alone ran us over ten thousand dollars. Again, not complaining cause both have done exactly what I wanted, brought Awareness.
But the fact is it came at a price. You don’t do what we do here to get rich. There is a lot of money in dementia business to be made, but not in the support end of it, which is why I think you see very little of it.
There is no money in giving support to others. However what you do get from it is priceless. The very fact that you are helping complete strangers in a way that they couldn’t find before Mp. Mp is our lifeline. And it takes money to keep this lifeline going.
No one will ever fully understand what Leeanne and I do to make this thing work. We are required to put a budget on the grant application. A budget that includes what we will do with the monies if granted, and how we will operate when the money is used up.
There also is a place on the application for hours spent in making our organization work. This is where it gets really complicated. To understand what the two of us do here for Mp, one would have to actually be with us for an entire day to realize the number of hours we put in.
It is essentially a 24hr, deal. It is the last thing we do at night, check Mp, and it is the very first thing we do in the mornings. And it’s not because we are addicted to Facebook as some might think. We put the number of hours in we do to make this thing run. It just doesn’t happen.
Now that we have our non-profit status and can accept donations, you will see posts like this from time to time. And believe it or not...the main reason is not to get your donations. The main reason is that to become a non-profit, and to stay a non-profit in good standing, you must have other sources of funding other than grant monies.
So, when we are asking for donations, it's not because we can, it's because we have to, to receive other grant monies. What we get from our members we will and do use to keep Mp running daily.
What we get from the grants we apply for will to be to set up our support groups all across America. To do this and to keep these support groups running will take huge amounts of money.
Not something we could ever depend on from our members. However it will be you, the members who benefit from these support groups. Nothing we do here is self serving.
Everything we do is for our members. To help them get through just one more day, one more hour, one more minute. It's what we do, and we are the best at it. Period.
So...yes indeed. The support you receive here is priceless. No one could ever even begin to put a price on what we do and have done for each other.
If I were to sell what we do here. Our intellectual property if you will, I am sure one could get millions.
Everyday we get someone, some organization that wants to help us in some way. What they are really seeing is dollar signs. The potential of tens of thousands of customers.
Clients if you will. Wanting to peddle this, and peddle that. We don't allow that here and never will. We're about Support and Awareness...not how much we can line the pockets of someone else.
There will never be a day Mp will be ran like some organizations. We will never get that big that we forget what's important. What brought us here. And what we need to do stay successful.
With your help, through donations we will take what we do to another level. And that level will indeed change lives. It's what we do, and we are just getting started....
These are our sites where you can donate.....
To donate at Indiegogo.com https://www.indiegogo.com/projects/dementia-support-and-awareness--2
To donate at our Facebook sitehttps://www.facebook.com/supportmemorypeopleinc
To donate through iGive, which gives a portion of your online spending to Memory People, visit http://www.igive.com/welcome/lp8/cr52.cfm and search for Memory People, In
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Dementia is Much More Than Memory Loss

Dementia...memory loss. Alzheimers...memory loss. Early On-Set Alzheimers...memory loss, and on and on and on.
Fact is memory loss is but one of the issues patients deal with, when battling dementia of any kind.
Forgetting something never killed anyone. But the other symptoms of this disease can and does.
You have two muscle groups in your body. Voluntary and Involuntary. Voluntary would be when you make the conscious decision to walk, pick something up, reach for something, lay down, get up...etc.
Involuntary is what your heart does for example. It beats regardless. Same way with breathing, you don't have to think to breathe. Breathing is an involuntary process that happens whether you are awake, asleep, etc.
Some will tell you that in the later stages patients forget to breathe, thus causing cardiac arrest. I am of the notion that one doesn't forget to breathe, or how to swallow, or how to do anything.
We all know dementia is a disease of the brain. Beginning in the hippocampus part of the brain where all your short term memories are stored.
In time, the plaques and tangles that are occurring spread to other parts of the brain, parts where your long term memory is located, parts where the brain itself allows you to do things like speak, walk, talk, make decisions, etc.
When this disease we call dementia spreads, we lose the ability to do what we once could. It starts out with perhaps not knowing phone numbers, or names, or being able to follow simple directions.
Then in time the disease progresses and the patient loses the ability to make rational decisions, even simple decisions are very difficult.
Many are of the notion that this happens because one simply forgets how to do all these things. I think it's not that I forget how to do things, it's that the disease, the dementia, if you will, has taken over parts of my brain that allow me to do things as decision making, following a conversation, etc.
The disease will also make it impossible for your involuntary muscles to do what they do in time as well. Thus breathing and the likes will be effected on some patients.
Memory loss indeed is one of the symptoms of dementia. And memory loss is what you hear most of the time when someone is talking about dementia, but it's much more than that.
The things I do, what I am confident is right, can be just the opposite and in fact has at times had very negative effects on us here.
We lose judgment. We don't forget how to make sound judgment decisions, we simply don't have the ability to do so anymore because of what this disease has done to portions of our brain.
Ask anyone about dementia and the very first thing that they will talk about is memory loss. Dementia is much more than that. Memory loss is a huge part of it, but again, what we lose, what we can no longer do is because this disease has effected certain portions of our brain.
As always this is just my take on what happens. I do know that what I am experiencing and what your loved one is experiencing is much more than memory loss.
That you can be sure of. No matter what anyone tells you. It is indeed more than memory issues. Much, much, more...

Monday, August 18, 2014

Accepting my diagnosis

I have said many times that when we got my diagnosis, it was like a weight had been lifted off of my shoulders.
It was devastating, but finally we knew what was going on and then we began making plans on what was needed to be done for the future.
Being diagnosed is not the end, it's the beginning. The stigma that goes on with this disease seems to have a patient incapacitated in months, which is rarely the case.
No one wants this to come into their lives, dementia. But if and when it does it is far better to come to terms with it, rather than walking around in denial.
You don't have to ever think that coming to terms with things that are happening or perhaps will happen means you have lost or given up, it simply means you know what is coming and will be doing things to help your loved one and yourself in the process.
I now hear birds sign. I never did before. I smell things like freshly cut grass, or the smell of a rain afterwards.
I hear a babbling creek now. It's the little things that I used to take for granted that now I hear and see and are truly appreciated of...

Sunday, August 17, 2014

Three questions caregivers should ask themselves

Three simple questions you can ask yourself about your loved one...
Are they Safe?
Are they Content?
Are they Pain Free?
If you can answer yes to some degree of certainty to these three questions, then you are doing the three most important things you can do as a caregiver.

I worry about today while I still can...

I get restless so many times. Couple that with fear, anxiety, depression, and not being able to remember and you have a recipe for disaster.
The only thing that keeps me sane is my medication. I take medication that quells my anxiety, depression, and such. Without it I am positive I could not function.
Still, with all the meds I am on, I have and Im sure any patient still deals with all these symptoms like depression, anxiety, loneliness, etc.
And being dependent on someone else, like my wife has just become a way of life for me now. I learned to adapt, the best I can. I do things I shouldn't, but never on purpose.
There will come a day when I and all patients are dependent on someone 24/7. That's the way this disease is. There are no two ways around it.
Being prepared and having a plan is a must. Even then, sometimes everything falls apart.
The thing we do is get through today. Not tomorrow or next week, but today. I don't even worry about things that will come, I take today and make it the very best I can...While I Still Can...

Hypocrisy, with growth comes change

Hypocrite. If you look up Hypocrite in the dictionary, it says:
“a person who pretends to have virtues, moral or religious beliefs, principles, etc., that he or she does not actually possess, especially a person whose actions belie stated beliefs.”
After reading this post, you will also see the term used in describing me.
Since the inception of Mp I have said over and over we will not seek donations for support from our members, period. The time has come that this way of thinking has to change.
The last thing I wanted was for us, Mp, was to be asking for any type of monetary help at all.
We live in a world that is ever changing. And that includes the changes that were made when we applied for and was granted our non-profit status.
I thought about this long and hard, but knew it was the right thing to do, to get Mp where I wanted it to go.
Since our approval of our non-profit status we learned that to apply for any grants, you must show that you are also raising funds on your own.
Mp itself has been self supporting up till now. What monies it did cost in the way of Support Cards, and such has been paid out by us.
Now, to apply for grants, to get our Memory People Support Groups up and running in cities all across the nation, we need to show another funding source.
Y ou have to show you are trying to raise funds in other ways. Our only way is through donations.
That means starting today you will be seeing in our banner at the top of the Mp page the information as to where you can go to support us.
You can go to our Facebook Page herehttps://www.facebook.com/supportmemorypeopleinc, or you can visit us on Indiegogo.com at this link https://www.indiegogo.com/projects/dementia-support-and-awareness--2 .
And when I say support, it indeed means a monetary donation. Something I vowed I would never do. Hence the hypocrite tag.
For those who will go off in a tangent and rant about how we are now wanting donations, I say let them. We have bigger fish to fry , we' re providing 24/7 support and critical resources to thousands, and we know that thousands more need it.
We will continue what we're doing here in Mp, but we're going to do more of it, and that is going to take money.
It’s not like we can have a car wash, or bake sale, or even a 5K run at this time. We are an internet based corporation and all our Board Members and committee members are all over the United States.
So for now our funding source w ill be donations. That being said, we will no t be hounding anyone here on Mp for money. We will every week or so put a link to our donation pages we have set up.
Keep in mind no one is any more mindful then me to the financial difficulty one goes through with this disease. But, to get to where we want to be, to get our Memory Support Groups started up , we have to show that we are looking elsewhere for funding.
I want you to know, we have a grant writing team who is constantly searching out grants and funding for the support groups we want to start locally.
The train as they say has left the station. We are moving forward, just as I have said we would for close to five years now.
We are going to change the very meaning of Support Groups. We are going to offer just what we do here…no sugar coating, no fantasy concoctions to slow the progression, and no false hope.
I can’t th a nk our Board Members and the other committees who have worked tirelessly to make this thing happen. They too are doing this out of the goodness of their heart.
This is a passion, a wanting to help your fellow man, if you will. Someone you may not ever meet, yet someone we pour our hearts at to, so that we can take that next step.
Together, as it should be, as it always will be…
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Saturday, August 16, 2014

You will never get used to dementia





You'll get used to cold weather. You'll get used nothing but reruns being on TV. You get used to the noise the dishwasher makes.
Or the way the garage door never opens when you push the button. You'll get used to your Mother-in-Law,or the way your pants fit first thing in the morning.
You get used to getting the wrong thing you ordered at the drive through, or how your dog barks at air.
You can get used to how many times the kid say "Are we there yet?" You'll get used to hard water in a motel. You may even get used to the way your kids are constantly glued to their phones.
There are literally endless things that you can used to. But you will never, ever, get used to dementia...

Leaving





I'm thinkin' bout leaving. Been thinking about it for some time now. I wake up and it's on my mind, throughout the day it comes to me.

When I lay down, its the last thing I wonder about. Leaving? I often get so wrapped up in the concept of leaving, that if I could I would read everything there is about it.
Will it be peaceful? Will it be sudden? Will I linger? Will I have any cognitive abilities at all, or will they have long left me?

Will my family understand? Will my friends? When I leave, I won't be back. So leaving is something I have to right the first time.

I want to make sure I have done the things I promised myself I would do. Did I tell my wife how much I love her? Did I tell our kids how precious they are to me?
When you have dementia, you think about leaving. It's all you think about at times. Not leaving this world, as much as your mind leaving you completely.
I think about leaving. Sometimes it's all I think about...

Dementia and UTI's


We have so many family members/caregivers here that deal with UTI's. I have researched how to prevent UIT's from occurring and was not thrilled with the results.
Keep the area clean and get plenty of air to it. Drink plenty of liquids, and women have a whole host of things they can do, which severs no purpose to go into them here.

I know UTI's are combated when contracted with antibiotics. And again drinking plenty of fluids. What I don't understand is why there isn't any mention of some vitamin or some sort of drug that would indeed prevent these from even happening?
This as you all know is a huge problem when dealing with your loved one who has dementia. And yet, it is hardly talked about in the medical field.

A UTI can and does cause many things to happen. Your loved one will be more confused as usual, they can lash out at the littlest things, they are even more prone to being abusive, verbally and it can turn physical. Not to mention the pain that they are in and may not be able to describe it.
Imagine having a UTI and not being able to describe what is happening, let alone the pain you are in.

Yet, you hear little to nothing about this when you research dementia. I think the reason being the people writing these articles, or medical findings, or whatever you choose to call them don't address the huge problems a UTI can cause, simply because they either don't realize how much of a problem these are, or they don't know what to say about UIT's and dementia.

Again, everyone here knows what a huge issue this is, and its an issue that can happen time and time again. If you are perhaps a newer caregiver, you may not even realize that your loved one may have a UTI.

You may assume they are simply getting worse, the dementia has progressed, when in fact it is a urinary track infection. I would be safe to say there are some caregivers out there who don't even realize that men can and do get UTI's.

With all the research and medical trails going on, you would think the problems the patients experience with these would be addressed. And you would also think there is something more that can be done then just making sure the area is clean, getting air to it, and you drink plenty of fluids.

Try getting a mid to late stage patient who won't do anything you want them to on any given day, try getting them to drink plenty of fluids. It's not going to happen.
Just one more thing that needs to be addressed, but little to nothing is done to rectify the symptoms or even the cause of UTI's. My wife has had these and she knows all to well when one is coming on.

Do you suppose a patient, one who has lost most of their cognitive ability knows when one is coming on? Do you think every caregiver is even aware that these occur???

This needs to be addressed. But good luck with that. I have been pounding the drum of caregiver funding for well over four years and I can't get anyone in authority to listen.
It's things like this that are very disheartening. Very...

Care Warriors






Caregiver, a thankless role? Perhaps. Especially in the mid to late stage of dementia.
I like the term our dear friend and fellow Mp member Diane Elinor Hoover uses, Care Warrior.
Being a caregiver for a dementia patient is unlike any other caregiver roll there is. You are far more than a caregiver. You indeed take over every aspect of the patients life.
You have to watch them constantly 24/7. One small deviation and that could be the very moment they do something that could very easily harm themselves or someone around them.
From touching a hot dish that just came out of the oven, to making sure all the knives are put away somewhere so they won't accidentally cut themselves.
Having any and all firearms secured, making sure the setting on the hot water tank is not at as setting where they could perhaps scald themselves.
You have to watch them every second you are away from the house, fearing somehow they may just walk away. And if you are out of the house enjoying a small respite break, you then worry constantly, "Are they alright? Can the person you left with them handle what may come up".
You can't leave anything edible just out where they may get it and choke on it, and even inedible things. Anything small they may get in their mouth to swallow, they may try.
Things that everyone else takes for granted, the things one knows not to do and has since a young child, are the very things you, the caregiver have to be aware of constantly.
You may be dealing with sundowners, where your loved one gets increasing agitated in the early evenings or this could happen anytime. You may be dealing with shadowing. Where the patient will not leave your side for one second.
There may be anger issues with your loved one you must contend with, mental or even physical abuse happens. Just things happening around the house, something as simple as the phone ringing could set a patient off.
Yes, indeed, Care Warriors is the term for you, the one who cares for loved ones with dementia. They are indeed 100% of the time in a battle. A Warrior who must overcome anything that comes along.
Things that will happen day after day, and also they will have to deal with new things that can happen at any given moment.
I have said before there needs to be a caregiver manual, and I got back many comments that said there are. There are hundreds of books, if not thousands written about caregiving and what you need to know.
My thing is, there is no book that is going to help you at three in the morning, when you spouse is screaming in terror, has no idea where they are, or who you are for that matter.
Or to the ones that their loved one has just walked away from a care facility, or their very own home for that matter. There is no manual that will get you through these types of situations, and the hundreds more that can and will happen.
You are on your own, make no mistake about it. And the patient, depends on you 100% of the time at one point. Could be in the very beginning, or soon after a diagnosis.
I can't remember not depending on someone. But then again, I can't remember what I had dinner last night.
I thank God everyday for you, the Care Warrior. You will never know or ever understand what it means to me, a patient to have people around you who you have to put complete trust in...we have to depend on others.
We simply have no choice...