Sunday, June 29, 2014

Patients, caregivers and advocates together brining support and awareness


When this whole thing began with me back in 2010, I remember telling this one person that we were going to turn this Support thing on its head.

The way people were being treated, the way you had to meet some of the dumbest criteria's, the way if you were a patient you could not attend a support group meeting, or if you were not a certain age.

The way the facilitator of the support group would have to abide by whatever was told of them they were to talk about and hand out.
The way I watched a VHS tape of how you should talk to your doctor. A VHS tape in 2011?

Who even has these anymore? This segment was so old the doctor was actually smoking in his office while talking to the patient.
What on earth good could that possibly do to have a group of people watch something so outdated and so out of touch as to what is happening now?

When I told this person we would be changing the way people look at support groups, they just nodded and said I know.

They didn't know. And they were part of the problem. We have to do this together. To separate the two groups, patients and caregivers is not how we learn from one another.

What good is going to come from a support group with all patients? In time, no one will know what the hell is going on, what was said, what they are even talking about.
And if you have all caregivers, then you have a group of people trying to fix something they don't know the first thing about.

The two must talk. The two must share their experiences. WE do that here, and we are about to blow the lid off of the way others offer support. We are because its the right thing to do.

We will have doubters. When your successful there are always those who want to try to tear you down, for whatever reason. They have tried for years.
We're still here. And we're just getting stated. Just getting started indeed. What we do here on Mp is just a warm up to the support your going to see in the coming months.
Changing lives, one person at time...

Memory People Receives Non-Profit Status





I have an announcement to make. One that we have been wanting to make for the better part of a year and half.

A group of us comprised of Leeanne, Louis, Michele, Pauline, Kathy, Phyllis June and I got together over two years ago and began working on something that will help us to improve and expand Memory People's outreach to those who are affected by dementia.

This won't change the way we offer Support & Awareness, or the way we handle things day to day here on Mp.

Through work and dedication, especially from Leeanne, Michele, and Kathy we applied for a non-profit organization status.
I am pleased to announce that we have been approved for that status. This has been a labor of love, for sure. There were days that we all thought, are we every going to get through this.

We finally got the application done, sent in and waited. We waited, and we waited some more. But finally, we find out that we were approved and can now operate as a non-profit.

How will that change things, you ask? We will be applying for grants from corporations, foundations and others and the first thing we will be doing is something that Leeanne and Louis have been doing for over two years now.
We will be implementing Memory People Support Groups. But these groups will be on the ground, not through the internet. We have already put together a proposal of sorts that outline what we will be with these groups.
Groups that will begin springing up all across America, and the world for that matter. I have said for years, everything takes money. To get anything done, you have to have capitol. We now will have that capitol.

One of our goals is also to host our own site and eventually move off of Facebook . We will have our own servers, our own site. Nothing will change in the way we do things on Mp, but we won’t be under the powers to be at Facebook finally.
Getting Memory People Support Groups™ in your area is going to be dream come true for us. People will get the same support, the way they do here on Mp, it will just be in person.

There will be some guidelines as to who facilitates our Memory People Support Groups™, but they will be exactly we do here. I can’t tell you how this will help caregivers.

Many times we hear there are no support groups where someone lives, or they have them, they just aren’t being run the way they should. Too many guidelines, and such.
With us, you won’t have that. We already know what to do. We already know what works, now we just take what we do here and duplicate it over in over in cities all across the nation.

This is a dream come true for me. And I will never be able to thank those who made this possible.
We have everything done that was needed, all we had been waiting for was the approval of our non-profit status and that too became reality on June 25, 2014.
This will change everything when it comes to how people are being supported. We will be reaching out to you, or members for those of you who would want to facilitate our Memory People Support Group™ in your area.

We will have Leeanne, myself and others in office actually flying to your location for start up. This will be something that many said could not be done, but will be…because we don’t ever take no for an answer.

We have a guide by which one will be able to run these groups in a manner in which everyone gets the most out of them. They will be small, not more than twelve to a group and once the facilitator gets going, these groups can meet as often as they like.
Leeanne and I will be there when ever someone wants via Skype. And we will be popping into some meetings unannounced at times. I can’t tell you how well these will be accepted.

As always there will be others who will try to imitate what we do here. But no one can do this as good as we do. And we will be coming to help you out, via these support groups.

I am so lucky to have these loving, caring people around me, wanting the same thing I have always wanted. To do what we can to make the caregivers and family members lives a little more tolerable.
We can’t fix anything, but we will make a difference, just as we do here day after day…

Monday, June 23, 2014

Did I Do Enough?

"Did I do enough? Could I have done more? Should I have done this, or that?"
All these questions race through a caregivers mind toward the end. It's very difficult to think that these things we say are normal, but they indeed are.

When this disease comes into your life it changes everything. I will never forget that being said at our dinning room table right after my diagnosis.

A social worker from the Alzheimer Association was here to talk to us, answer our questions and give us guidance.

She told us everything will change, but more importantly we need to change. Right now. Our priorities have to be one another.

We need to do things that are important to us. I need to do things that I have always wanted to do.

And we did all of these. But the one thing that wasn't discussed is the grief that comes along with this disease. The grief that begins long before the patients passing.
This is indeed "The Long Goodbye", as some have termed it. I think one of the most important things you need to do is talk to one another.

Many times patients are not talked to about their wishes, about what they want. When the end comes closer one tends to think, "Did I do enough?"

All too often we see posts about end of life issues. "Do we deny food, water? Is this what our loved one would have wanted?" "Should we have gotten a DNR, or should we just wait and see how it goes/" We ask these things because some didn't take the time to talk to their loved one about these very important issues.

My contention is, if we talk to one another, and I am not meaning some death bed confession, but if we communicate well before the mid to later stages a lot of this grief of "Did I do all I could" would not occur.

Instead of thinking or saying these things, you would be talking about you did everything you could to meet your loved ones wishes. Everything within reason, and everything humanly possible.

Denial plays a huge part in some thinking they did not do enough. If you have denied there was a problem from the beginning, or if you were stuck in the early stages of this disease, while your loved one slowly but surly went on the mid and final stages, this creates a huge problem of acceptance.

Anytime someone dies we wonder why? We wonder did we do all we could? Did the doctors do everything they could?

With dementia the reality is everyone does all they can. The reason I know this is what happens with dementia cannot be fixed. This too is one of the things caregivers and family members get hung up on.

Nothing that happened to your loved one from the very beginning of this disease, was fixable. Nothing. You could do things to make their life more tolerable. You could do things to let them know you are there with them.

But you couldn't do what everyone wants done. Fix what is happening. I tell people all then time to have a plan, then have another. Being a caregiver you well know or will find out nothing rarely goes to plan.

I recommend spiritual guidance of some sort, especially toward the end. No matter what your religion, no matter what your belief, you simply have to have someone, something to help you through the end stages.

I was never very religious. Least not as religion goes. But after the loss of my daughter and most certainly since my diagnosis I take the time to talk to our creator.
I take the time to tell him i understand. This calms me. It once again doesn't fix anything, but for me it makes this journey bearable.

Communicate. With someone. If your spouse has this disease, talk to one another. Don't wait and find yourself wondering "Did I do enough?", "Could I have fixed this sooner?" Remember you can't fix this.

Once you realize that you cannot fix anything about what is happening, once you realize that no one can, it does make things easier to accept.

It's the ones who keep thinking they could have done more, could have made this easier for their loved one, those are the ones who are haunted with grief for a very long time.

Sometimes for the rest of their lives. And sometimes the family is at peace after a loss. Knowing that they indeed did everything they could to make this journey for their loved one better.

Do they wonder if they did enough? Not really. They are thinking and talking about everything they did for their loved one. Up to and including the very last breath, their loved one was cared for and things were done to the best of your ability.
And that is what every patient wants. Trust me on this. I know. I don't expect this to be fixed, I have made peace with that long ago. I only want to know I am not alone, and people around did their best.

Even if and when its time to think about placing you loved one, you are doing this because it is the best thing for them.
That's all anyone can ask for.

Friday, June 20, 2014

Wandering

These are our loved ones. The facility of your choosing has a responsibility to keep them safe and from wandering. Caregivers and family members have a responsibility to report such cases to the authorities to see if any other wandering cases have been reported and if charges against the facility apply.

I was an investigator for six counties here in Ohio and worked closely with facilities to combat this growing problem. Thank God no one died on my watch.

We did have cases of wandering, ever facility will sooner or later. It's the ones who do nothing to educate the staff so this doesn't occur again.

Here's something to keep in mind. We have all been at a county or state fair, or any amusement park atmosphere. We have all had that sick feeling in the pit of your stomach when we thought for just a split second one of our kids was missing.

Take that feeling and imagine it ten times worse. That's what it's like for the family....can you imagine how much terror the patient is in while wandering???

We need to take this more seriously. If that means holding the facilities feet to the fire more, so be it. These are our family members we are talking about.

For them to just wander away is inexcusable. Fix the problem before it becomes a tragedy....

Thursday, June 19, 2014

Life Happens



These are examples of "life happens". When we make some promises, or we want
our promises to be carried out, sometimes for what ever reason they just aren't.

To think every promise or dying declaration is indeed followed to the letter is not practical. One can simply change their mind. Or the caregiver/family member for whatever reason can no do this anymore.

Say, your primary caregiver gets hit by a bus. Or, they themselves are brought down by some unforeseen disease.

These are examples of "life happens". Promises as they say are made to be broken. I can never understand how someone can make a promise when they have no earthly idea what the future for them or their loved ones hold.

I want to be placed. That there is no question of. I really am not concerned about dying at home. Matter of fact for me I think it would much easier on everyone involved if I pass away in a facility with my family around me.

When someone wants to die at home it is a gallant vesture. But sometimes so many things go awry. One of them I am very familiar with is the family almost always panics and calls 911.

When EMS arrives a lot of times the DNR cannot be located and they have to start life saving procedures. They have to, it's the law. They will preform life saving techniques unless you have a DNR signed by a doctor on hand.

Not somewhere, but it has to with the patient. And for the life of me, EMS should never be called in these situations, but families panic. And they are. More times than not.

Another is the body could be in the home after death for up to an hour, or more. Some feel that their loved one dies and they make a call and within minutes their loved one is taken away.

Doesn't work like that. It could be an hour, it could be longer. If you don't mind you loved ones body lying there, all is good.

The removal of the body is another thing people don't think of. Believe it or not there have been occasions where the body removal company has only one person there and has asked a family member to help with the removal.

This is so wrong on so many levels but it happens. We had a body removal service and were very successful on account of the way we were always dressed professional and all our employees acted accordingly.

Then you have to deal with the removal of the hospital bed, and all sorts of other things, All this takes time.

Again, this doesn't happen right away. The bed alone could be there for a couple of days. If this is alright with you, then your good to go. If you have reservations, they need to be talked about now.

Everyone is different. And even if my wife would want to die at home, I would indeed tell her I would do everything possible to make that happen and leave it at that.

I see no need for empty promises when I have no idea, nor does she what lies ahead....

Without a Vision, the People Perish

Did you know....we do more here for Awareness & Support by accident, then most sites of this nature do on purpose.

That is not knocking anyone or any other site. That is merely an observation.
We have many, many spin off sites that go right along with our main page, Mp.
We do Memory People talks, which has been a huge success. We have been doing our Memory People Group Support Meetings through Skype for over two years or longer.

These were in the beginning so very helpful to caregivers. And it has only grown in popularity. We are there at your meeting. It's still your support group, I am just there to answer questions and talk about how we deal with my disease from the beginning to now.

We have been working with people, especially the newly diagnose families to give them answers to all their questions. These are the most vulnerable people, the ones newly diagnosed.

It is imperative that they realize that even though this disease is progressing disease, with no way of slowing the progression, and even though it is fatal, none of these things is going to happen over night.

The doctors for whatever reason miss a golden opportunity when they diagnose patients. They need to tell them about this disease, they need to give them numbers to call for local support.

Many things they need to do, but rarely are you given any advice, let alone where to turn to. We have that here on Mp.

We have had a "mentor" program for newly diagnosed patients from the beginning of this whole thing. Mainly because that was exactly what I needed. Other patients to talk to.

You will find many other support groups on the internet even segregate patients and caregivers. We have always thought this to be a huge mistake.

One very prominent person in the field of dementia and them being a patient themselves told me in the very beginning of Mp that it would never work having patients and caregivers together.

Now, this same person has indeed taken what we do here and tried to imitate it, as many others have. They can't. There is plenty of this disease to go around.
And here at Mp we don't own the corner market on any of it. We are however the very best at what we do.

Imitation is the best form of flattery they say. If that indeed is so, we should be very, very flattered. Many have taken what we have and ran with it, even some have tried to expand on it.

But no one, not one group will ever do what we do, with the success we have had. We are trail blazers. We took something that many said would never work, we made it work and now they themselves try to emulate us.
I applaud every sight on the internet. All the reputable ones that is. You have to be careful when searching for an internet based support group like us.
Some have only their agendas to offer. We don't do that. There are no agenda's here. Just as we don't "sponsor" other sites or other projects.

It's just not what we do here. We are no ones personal billboard here. We are all about Support & Awareness. If you are on board with that this is indeed the place for you.
If you have some sort of agenda, we will see it, and we will deal with that. We're about each other, not any one person or what others are doing.

We are so glad each of you are here and share your stories both good and bad. It's how we learn. It's how we cope. It's how we are able to put one foot in front of the other, when we are in our darkest hours....

Sam my dementia service dog and more...

Phyllis June and I did some volunteer work yesterday for the GOBA riders that were here for a lay over. These are a group of about 2,000 bike riders who do from 50 to 100 miles a day through the beautiful back roads of our community here.

We were working the minor injury booth. Taking care of scrapes, burns, dehydration and what have you.

A lady came up to us, and was asking about Sam. I told her what type of service dog he is, and she went on to tell me her 80 year old mother has some dementia problems.
She hasn't been diagnosed, but has all the signs. About an hour later, she left and went on to the massage area, but took with her more information and a clearer understanding about dementia then she had ever learned in the last year dealing with her Mom's doctor and the neurologists.

She took one of my Mp cards, and said she and her sister would be joining us when she got back to Georgia.

Sam...he is much more than a dementia service dog. Sometimes he is my walking, breathing billboard for this disease...Thank you Sammy Boy for helping yet another person learn about this disease....


Activities for dementia patients and placement

Does it not seem strange to you, that one of the highlights of the facility when you are there for the first time is them telling you about the activities that they offer?

I assume when Phyllis June Phelps makes the decision that it is time for me to be placed, what activities a facility has will not be on her list of must have's.
Perhaps I'm wrong, but most placements take place because your loved one is in the later stages and something has happened, or is constantly happening that has led you to this decision.

Could be your loved one's needs you can no longer attend to, or it could be they have become abusive in one way or another. They could be wanderers, they could be just at the end stage of this disease.

No matter what the circumstances are, activities are probably not number one on your list of what they have to offer.

This is another form of stigma that comes with dementia patients. Someone, somewhere decided that to entice you to place your loved one with their facility, they need to be sure they tell you about all the activities they offer.
Here is a short list of what I would be looking for if searching for a facility for a loved one...

Does the facility feel home-like?
Is it obvious how to get to the toilet from most parts of the facility?
Are residents’ different cultural backgrounds considered?


Do people usually seem to be relaxed and comfortable in the facility?

Are objects that people are likely to bump into or trip over placed in safe areas?

Would it be clear to the resident where to go if they needed help?

Is this room decorated with subtle, home-like furnishings that are not too busy or distracting?
Is this room decorated in a style that the resident would feel comfortable with?
Are there quiet and private spaces available?

If you were lost could you see something that would help you to work out where you were?

Is there a safe sun-protected outdoor space for residents?

Does each resident have space for their personal, special belongings nearby?

Have they had issues with patients wandering off from the facility, and if so how many?

After I inquired about some of these basic things, then we could talk about activities. Activities are important to some. We just need to keep this in perspective. What is important, and what is nice?

Again, just my thoughts...but think about it when and if you are every placed in a position to choose a facility. Keep their basic needs in mind. Not if they have bingo on Wednesday nights...

Alcohol and dementia

I used to drink. And know one had a better time in a bar than I. Listening to music, playing music, shooting pool, and of course telling lies.
Then Mr. Alzheimer came into the picture. I still drank. Not any more, but did tip a few just the same.

About two years ago, or a bit longer now I decided that I was going to quit drinking alcohol and haven't been in a bar since.

This was as it should be for everyone a personal decision. I was having great difficulty from the symptom of dementia and I was smart enough to realize that alcohol was just like adding fuel to the fire.

If I wanted I would and could have a beer today. I could have thee, ten, twelve. That's not the issue. The issue is I know I am losing more and more of my cognitive ability all the time.

I didn't and don't need anything that fogs my mind more than it is now. It is my contention that anything is fine within reason, and with limitations.
Anything of course that is legal. My main concern was I was having to retire and I knew if I kept drinking I would have way too much idle time on my hands and would more than likely spend most of it in a bar.

Like I said, this was a personal choice. One that Phyllis June Phelps though she had nothing to do with, is very thankful just the same.

I don't think a beer or two, a glass of wine, shot of Jack Daniels is going to hurt anyone with dementia. It is as always up to the family/caregiver to see that their loved one does not hurt themselves or anyone else.

So...I may have a beer today. It's doubtful. But the real story is that I can if I want. That alone makes it all good. Don't deprive a patient of a beer once in a while, simply because you may think it will harm them.

Let's not forget, we have a progressing disease that is fatal. That alone would make anyone dealing with this day in and day want a drink...

Saturday, June 14, 2014

Today I am thankful


Thankful. That's what I am. That's what I tell everyone when asked, "How are you?"
And today is perfect example of that. I feel better today, right now than I have in a long time.

The thing with this disease that can change in a moments notice, or I could have a string of good days in a row.

I often tell people about this, how this disease changes so rapidly. I mostly talk about this when someone tells me how their love ones is on some sort of concoction that claims to slow the progression of the disease.

If you have been a member here for any length of time you will know that we don't allow posts claiming that some remedy does indeed slow the progression of the disease. All this does is offer false hope.

We are all about Hope here on Mp, just not false hope. False hope does no one any good. Those who claim this or that is indeed slowing the progression of their loved one.

What more likely happens is your loved one is experiencing a day like I am today. I could see someone saying if they were around me today that the disease is indeed slowing down.

That would be a false statement. My progression is the same now as it has been for over five years. Steady.

But today, well, today for whatever reason I feel "normal". When I say that is doesn't mean that things are like they used to. That will never happen.
When you have dementia is is with you every second of every day for the rest of your life. But, just like today there are those windows of opportunity where I can find that things are as close to "normal" as they will ever get.

Once again it's very important to know that all of this could change in a matter of moments. This disease is like the tide coming in.
On a calm day the waves are nice and mellow, lapping on the shore in a way it can lull you to sleep in no time.

But in minutes those same waves can be like a hurricane has been unleashed and everything that was good just moments ago, is gone.
Fleeting moments. Sometimes they last for just a few minutes. Sometimes it can be days, and sometimes a combination of the two.

But trust me when I tell you, the the disease I have is progressing. Even on this Saturday morning as I sit outside enjoying this beautiful morning.
Watching Sam and Rambo play in the yard. Enjoying the birds singing, and just being "Thankful"....this afternoon things could come crashing down...but now, right this moment I am one lucky guy, and I am thankful...

Thursday, June 12, 2014

Plan before diagnosis

I have talked about this before, but we are getting so many new members daily, and this is so important it bears repeating.

If you are here, chances are you or your loved one has some issues with memory loss, or may have already been diagnosed.

For those of you who have been diagnosed, I always tell them to get to an elder law attorney. These folks know the in's and out's of ways to protect ones assets.

It is very important. Don't take the advice of Uncle Joe, or anyone else. Elder law's vary from state to state and you want someone who does this for a living.

Not someone who knew someone who told them something. This is way to important to put your trust and finances in the hands of someone who knows everything, but done nothing.

For those of you who have loved ones who have yet to be diagnosed, you are in my opinion in a little bit better situation then those who have an official diagnosis.

What I mean is, before you take or you yourself make an appointment to be tested for dementia you want to get long term health care from your insurance provider.

These policies can be taken out anytime, and you want to do this before you go to your General Practitioner or a Neurologists.

The reason being is once you get a diagnosis, you can still get long term health care, but can you afford it is the question.

This is the one thing I wish someone would have told us. We didn't look into this, because we didn't have anyone to ask about such things.

With long term health care you will save literally tens of thousands of dollars having a policy in place before the diagnosis. And if the prognosis is something other than dementia, say, thyroid problems or whatever you can always cancel the policy.

Again, I wish someone had told us this. Just for an example, the exelon patch I wear everyday was just over $30 five years ago when I started taking it for one months supply.

That was when I had insurance. Now that I am on disability, the exelon patch is not covered. So the same patch, the same medication is now over $300 a month, instead of the $30 we were paying.
Nothing about this is right, but that's the way it is. We have two choices, and only two. I either quit using the patch, or we pay the price.

Of course I won't quit putting the patch on, as of right now we are getting by. Things changed around here drastically. I went from two jobs to none in a matter of days.
Then in time I went from excellent insurance to state funded insurance through my disability. I can't get on my wife's plan because of the policy that is offered, and a preexisting condition.
That is up for debate because of the Affordable Health Care Act which is now law. But it has yet to be implemented by corporations. Even so, I have insurance through the state so getting on her's is out.
Get your finances in order. Put your house and or property in someones else's name. If you have anything over $1500 here in Ohio, and own your home, you will not qualify for aid of any sort.
This may not seem important to many right now. But in the long term, believe me this disease has more time then most people have money.
It can run upwards of $6000 or more a month for a facility. And this is for just basic care of a dementia patient. If there are extenuating circumstances you will pay more, much more.
And all of this is gone over before any patient is placed. I have said over and over that dementia is big business. Any facility you look at will tell you all the things you want hear.
How they have activities for your loved one, the amount of staffing they have, the perfect track record they have and so on.
What they won't tell you is someone is going to pay. And they will get their money. Even if you can get aid of some sort, when the patient passes, what was not covered by Medicare or whatever is due.
And they will collect. One way or another. My cousin just had to sell her Mom's house, because of not having things in place. Her Mom was in a facility for just over a year and when the smoke cleared she owed the state over $138,000.
She had to sell the house in what they call an absolute auction. Meaning that whatever it went for, the state had to accept. But the bottom line was she got nothing.
The house she grew up in, the only house she had ever known was sold to the highest bidder in a matter of 45 minutes, and she was left with memories.
All of this because they didn't plan ahead. We told them time and time again, but they do what many do...they procrastinated. They would get to it, but in the end, they never did.
Don't let this happen to you. If you do nothing, that is what you get. Nothing...

Wednesday, June 11, 2014

Long Term Care Insurance

I have talked about this before, but we are getting so many new members daily, and this is so important it bears repeating.
If you are here, chances are you or your loved one has some issues with memory loss, or may have already been diagnosed.
For those of you who have been diagnosed, I always tell them to get to an elder law attorney. These folks know the in's and out's of ways to protect ones assets.
It is very important. Don't take the advice of Uncle Joe, or anyone else. Elder law's vary from state to state and you want someone who does this for a living.
Not someone who knew someone who told them something. This is way to important to put your trust and finances in the hands of someone who knows everything, but done nothing.
For those of you who have loved ones who have yet to be diagnosed, you are in my opinion in a little bit better situation then those who have an official diagnosis.
What I mean is, before you take or you yourself make an appointment to be tested for dementia you want to get long term health care from your insurance provider.
These policies can be taken out anytime, and you want to do this before you go to your General Practitioner or a Neurologists.
The reason being is once you get a diagnosis, you can still get long term health care, but can you afford it is the question.
This is the one thing I wish someone would have told us. We didn't look into this, because we didn't have anyone to ask about such things.
With long term health care you will save literally tens of thousands of dollars having a policy in place before the diagnosis. And if the prognosis is something other than dementia, say, thyroid problems or whatever you can always cancel the policy.
Again, I wish someone had told us this. Just for an example, the exelon patch I wear everyday was just over $30 five years ago when I started taking it for one months supply.
That was when I had insurance. Now that I am on disability, the exelon patch is not covered. So the same patch, the same medication is now over $300 a month, instead of the $30 we were paying.
Nothing about this is right, but that's the way it is. We have two choices, and only two. I either quit using the patch, or we pay the price.
Of course I won't quit putting the patch on, as of right now we are getting by. Things changed around here drastically. I went from two jobs to none in a matter of days.
Then in time I went from excellent insurance to state funded insurance through my disability. I can't get on my wife's plan because of the policy that is offered, and a preexisting condition.
That is up for debate because of the Affordable Health Care Act which is now law. But it has yet to be implemented by corporations. Even so, I have insurance through the state so getting on her's is out.
Get your finances in order. Put your house and or property in someones else's name. If you have anything over $1500 here in Ohio, and own your home, you will not qualify for aid of any sort.
This may not seem important to many right now. But in the long term, believe me this disease has more time then most people have money.
It can run upwards of $6000 or more a month for a facility. And this is for just basic care of a dementia patient. If there are extenuating circumstances you will pay more, much more.
And all of this is gone over before any patient is placed. I have said over and over that dementia is big business. Any facility you look at will tell you all the things you want hear.
How they have activities for your loved one, the amount of staffing they have, the perfect track record they have and so on.
What they won't tell you is someone is going to pay. And they will get their money. Even if you can get aid of some sort, when the patient passes, what was not covered by Medicare or whatever is due.
And they will collect. One way or another. My cousin just had to sell her Mom's house, because of not having things in place. Her Mom was in a facility for just over a year and when the smoke cleared she owed the state over $138,000.
She had to sell the house in what they call an absolute auction. Meaning that whatever it went for, the state had to accept. But the bottom line was she got nothing.
The house she grew up in, the only house she had ever known was sold to the highest bidder in a matter of 45 minutes, and she was left with memories.
All of this because they didn't plan ahead. We told them time and time again, but they do what many do...they procrastinated. They would get to it, but in the end, they never did.
Don't let this happen to you. If you do nothing, that is what you get. Nothing...

We deserve better




I could not function without the meds I take. I know that. Phyllis June knows that.
But I want more than to function. Everyone does. We deserve better. And the thing is were just not there.
The meds I could not do without are my anxiety meds, depression medication, sleeping meds, etc. There isn't one that I feel that has helped one bit for this disease.
Everything I take is for the symptoms. To lesson them. Rarely if ever do they work. Patients are constantly stressed, depressed, etc.
They keep my at a functional state. Till they no longer do that. Then I will get like many of your loved ones. Verbally abusive, perhaps even physically abusive.
I won't know anyone, or where I even am. I won't be able to talk, to carry on a conversation, to laugh. Just as some of your loved ones are now.
And all of this is being put off, by meds. Meds to keep us functioning, cause that's all there is.
Everyone deserves better. The caregiver. Certainly the patient. So, it's not that I am against the meds I take. I am and will be forever grateful for they do allow me to function, to a certain extent.
WE just deserve better. We all do. And I truly don't think anyone cares. I don't mean here...I mean in the grand scheme of things, I really don' think that this dementia thing is even on their radar.
If it was, wouldn't you think we would do better than just function? I get in these somber moods sometimes because of this disease,
I was never the one to be serious about much of anything. But this is serious. And it's taking one of us ever 68 seconds...

Tuesday, June 10, 2014

There are no medications that slow this disease



If I had a dollar for every time someone thinks they have a handle on this disease, well, lets just say we don't.
It amazes me how some, even patients can live in this bubble like world and be so wrong to the things around them.
I just had a PHD, I won't say in what, but a PHD tell me that there is medications that slow the disease, and he has seen the research.
Give me a break. When someone, anyone says things like this you lose all credibility. I am sure you can find some study somewhere that indeed says that some medication slows dementia.
So. That doesn't mean a thing. I can show you "studies" that show coconut oil slows the progression. These are fabricated and people take from them what they want.
Don't you think that if there was some medication, any medication it would be on every news channel for days. But, not only is it not, these people site some study from some researcher they don't even know who.
Anytime you read an article pertaining to slowing of the disease dementia, pay close attention the the words they use. Not the words in the headlines, but the words in the article.
You will see words like "could", "may", "should", "perhaps", possible", and on and on. No one that wants a cure or a drug that slows the progression see's these words, but they are there.
They are always there. I am not and don't want to be the bearer of bad news. But if you are a member here, you should well know that there is no cure, and there is nothing that slows the progression.
I have even heard that here on Mp, if you don't agree, you will be told about it. That again is not all together true. We will let you know if you post about a cure or anything that slows the progression that it is not what we do here. And the post will be removed.
Even the sites that dedicate themselves to this nonsense are just leading each other on. There are many sites that do allow this. We just aren't one of them.
We are about Awareness and Support. Allowing someone to post about things that simply aren't true, is not Awareness and its not Support. You may get a lot of people agreeing there is a cure, or something that slows the progression but all that amounts to is people who again believe what they want to believe.
That is the truth. I wish there were. We all pray one day there will be a cure. We simply aren't there yet. All these claims are just that, claims. False hope.
You would be much better off accepting what is happening and spending your time with things that matter, like being with your loved one or just listening to them.
All this other is just nonsense. And it's not because I say it's nonsense. I am just the messenger. You will not hear of cures or meds that slow the progression here, and the only reason is that it simply isn't true.
We deal in reality. And the reality is we are not there yet. If we were, if there were a cure today it would take years, perhaps decades to get it to the patients.
The FDA would have to test and retest. We simply aren't there. And we won't be in our lifetime. Trust me, you are better served hearing this, than...
"They have something that slows the progression. My husband is taking it and it works". It simply isn't true...

Sunday, June 8, 2014

Is this sun causing me to have bad days?

I have had a couple of bad days. Well, maybe a few. They seem to come in droves anymore.

I am not positive, cause with this disease, you can never be certain, but I am thinking it may have to do with being out in the sun too much.

I am on the same meds I have taken for five years. Nothing has changed, some have been increased, but no real change in any meds.
That leaves me to think, since it is summer, and I have been out a lot, it could be a reaction to too much sun.

Who knows? It's an educated guess at best. Some of my meds does say try to abound direct sunlight. But like I said I have been on the same ones for a very long time.
Everything has a first. So, this could be one of those firsts. Today is a bit better. So far. I came home for the camper yesterday it was getting so bad.

I knew I needed to be home, with Phyllis June working her 24hr. shift in EMS. I did increase my one med which I can per doctor's orders when things like this happen.
So...I need to stay in for a day or so. See if things level out. If not, then it's just another symptom that I have deal with that comes with the disease,

The days have been worse than others. That's what leads me to the sun thing. The truth is, I have no idea. No one does.

One just tries to justify what is happening, when sometimes you just need to learn to deal with it. Make the best of what is happening. While you still can...

Thursday, June 5, 2014

Talk with the patient, end-of-life issues are their choice

Feeding tubes. End of life issues. Living will. All of these things every family member will no doubt encounter at the end.

The time to talk about these things is now. Many a family have a wedge placed between them when these decisions are not made in advance.

And I am a firm believer that all of these decisions should be made by the patient. The problem is, for whatever reason these talks rarely take place.
Then one day you find yourself standing at the foot of a bed, contemplating on what your loved one would have done.

This is the time when everyone automatically becomes an expert on what their loved one wanted.

I have seen this countless times in law enforcement and EMS. And the sad part of all of this is that all of this can be dealt with if you just talk about it.
It is like the elephant in the room for many. And I get that. But it is essential to have these end of life issues in place.

Mine are taken care of, and have been for four years or better. Phyllis June knows exactly what I want, and will carry out my wishes to the tee.
They are my wishes. Not hers. Not our daughters. That's the thing. These decisions need to be made by the patient.

Do they want feeding tubes in the end? Or do they want to be deprived of food and water?

I personally want everything done up till the time when my heart stops. This is called DNRCC. Do Not Resuscitate Comfort Care.I want to be left on oxygen, I want feeding tubes, and I want to be hydrated. My fear is starving to death and not being able to communicate this.

Many will tell you that depriving your loved one of food and water is not painful. My answer to that is the time you decide to take your loved one off food and water, you too should quit eating and drinking.

Then you can see if it painless. Again, that's just my personal take of feeding tubes. Its a personal choice but no one is going to tell me depriving someone of food and water is painless.

They simply don't know that. No one does.
Do they want no measures taken to preserve their life? Or do they want everything done up and until the heart has stopped working and no measures are to be taken to start it, (CPR)?

Do they want to the want the life support machines to be turned off when there is no brain activity at all, or do they want to live that way for an extended period of time?
Most people don't realize that there is much more to all this then the family just saying we want them "unplugged" from the machine.

First of all no one ever gets "unplugged". I have always hated that term. And second, it takes two physicians to declare your loved one brain dead.

Then and only then do they go to the immediate family and tell them there is no sign of life. The family then makes the decision to terminate.
But first it has to be signed off by two physicians. No one ever gets "unplugged" because someone in the family deems its time.

Then there is a procedure, they are taken off the ventilator and their vital signs are monitored until there is no signs of life. The person is then declared dead and now the questions of what to next immediately start.

What funeral home? Cremation? Do you want your loved one embalmed? In most states if the deceased is put in the ground within 24hrs you do not need to get them embalmed.

But if you are wanting calling hours for them, or if that is their wish they do need to be embalmed regardless.

Also, if cremation is the choice and it is to be done immediately, it is imperative that the family spend time with their loved one.

I have been on many a in home death call where the family for whatever reason forgot that cremation was to be done immediately and they are in shock and simply don't realize that right then and there is the last time they will ever see their loved one.
Many of family has called the funeral home to see their loved one and the body is off to be cremated. This has to be done within like I said 24hrs or they must be embalmed.

Which for all intense and purposes, embalming someone who is going to be cremated right away is just a waste of money.

So....end of life issues. There are dozens of decisions that need to be made. And if not made in advance, all of these will be done under duress.
No one wants to go through that, but many do simply because they don't and won't talk about end of life issues...

There is no right or wrong here. The decisions made are that of the patient and patient is entitled to their own. The only real wrong thing is doing nothing.
Death will come, no matter if you are prepared or not...

Wednesday, June 4, 2014

Phones in a facility



"I think I'll call Mom. I haven't talked to her and need to see how she is doing".
Everyone has said and done this. But to call a person with dementia is sometimes not the right thing to do.

From my experience, when it comes to using the phone, I'd rather not. There are a lot of things that happen when you are talking to someone on the phone, and for me the patient, none of them are good.

I have to remember who I am talking to, what they want, what I am going to say, and then remember that they even called.

When someone does call me, I generally let it go to voice mail. That way it lets me listen to who it is and see if I know them. It allows me to hear and play back what they said, and it allows me to have that voice recording for later.

When I have to answer or Phyllis June says, "It's for you", I put in on speaker so she can hear what is being said on the other end.
Same as when I do conference calls to set up an interview, or a radio show someone is wanting me to do. I have Leeanne Chames on the call with me every time so she knows exactly what is being said.

I never allow someone to interview me without someone listening in. Not that I couldn't do that, it's just that I want to make sure what I am saying to them about whatever, or what questions I am answering is indeed correct.
I never lie to anyone, about anything. But...with this disease I have certainly gotten some things wrong when explaining something.

The one thing you don't won't to do is to be misquoted and have it going out in a publication to tens of thousands of doctor's offices in one of the magazines or journals.

There are times especially for those long distant caregivers that have to call to check on their loved one. I just wanted to point out that what is so common to you, using your cell is not that easy anymore for your loved one.

You want to get a good example of what I am saying, watch your loved one the next time they are on the phone for whatever reason. You will plainly see by their facial expressions and the hesitation in their voice that this is indeed something stressful.
I certainly am not saying don't call your loved one. I am suggesting that if this is the only way to check on them, as always have a plan.

Make sure someone is there with them during the call. And talks slowly, and never have two or three part questions.
Don't say, "Is it raining there? What did you have for breakfast? and How are you feeling?" all in one sentence.

They have to think about too many things all at once. Like did I even eat? What did I eat? I haven't been outside today, or have I? and I feel alright. Or do I?
Confusion abounds when a dementia patient is on the phone. One of those things we all take for granted until this disease comes into your life...

Tuesday, June 3, 2014

Visiting love ones in the nursing home and excuses

"I don't go and visit Mom, cause she doesn't know who I am anymore."
How many of you have siblings that have said these very words? What this boils down to is excuses.

There are many excuses why family and friends don't come around at some point during this disease.

Everyone of them, everyone of the excuses are just that. Excuses. Here's a news flash for those who say "Mom doesn't know me anymore"....

You know her. This is the woman who gave you life. This is the woman who did without for many years to see that you had what you needed growing up.
It upsets me so when I hear someone say so passively that they aren't visiting their Mom, Dad, whoever because of some problem they have just being around them.
"I want to remember them as they were".

How shallow is that? We patients only ask that we be treated as we were before this disease.

With respect. I don't expect anyone to do anything different for me since my diagnosis. No one. We don't require any special treatment when we go out, 90% of the time people know there is something wrong with me but only because of Sam.
They have no idea I have dementia, and most just ask "What's the dog for", if you can believe that.

So the next time a family member tells you they aren't and won't be visiting the patient because of their shallow, self centered thinking, tell them what they need to hear.

Many times we come here and vent about this. And that is what we here at Mp are for. But in the same token, the ones you need to vent to are the very ones that pull such stunts.

You don't have to be confrontational. But when I hear someone say I can't go the facility and see Mom like that, it drives me insane. And I of course am a patient.
We patients hear and know more than what you think. I know when someone in a room is talking about me. You can tell by their mannerisms and just the looks you get.

We are who we were. We just have a disease, and the disease happens to be destroying our mental capacities and ability to function day to day, hour to hour and sometimes minute to minute...

Caregivers are the backbone of this disease

I have heard people say, "I was born a caregiver." I really think those who say this mean well. From the time we are born, we are cared for.

Our parents, our teachers, our Pastor, your spouse, even your kids in time.
But dementia brings a whole new aspect to the term "caregiver". I have been around nursing facilities for the better part of thirty years.

I was at one time an investigator for the state of Ohio for six different counties for abuse, theft, practices, and making sure polices and care given was up to parr.
There is no comparison in my mine to try to compare the care needed with a dementia patient, to someone who is just elderly or perhaps has another disease.

There are so many things that must be done for the dementia patient.. You have to worry about wandering, shadowing, and sundowners.

You have to deal with a whole host of things that your loved one will do, and may do over and over. In time you cannot communicate with them. It's sort of a guessing game to try to figure out what is going on with them.

There are no breaks when caring for a dementia patient. They are indeed like a very young child at times. You simply never know what they are going to do next.
You have to be aware of abuse, both physical, and mental. If in time you find you cannot do the caregiver thing and end up placing your loved one, that too may backfire.

There are patients who are simply not allowed to stay at a facility because of their behavior. Be it violence toward the workers there, sexual innuendo's toward other residences, or they just can't control the patient.
When you hear someone say, "I was born a caregiver", they are talking about typical caring for someone.

Caring for a dementia patient is not typical. There is nothing typical about what you will go through as a caregiver.

So when someone talks about caregiving and let's others know it's more of a natural thing, remember, there is nothing natural about dementia.

There is a reason the caregiver often passes before the patient. One of the things we patients worry about is our caregiver not being there to take care of us.

They may not talk about it. But it does indeed play a crucial role even if the patient doesn't act as if they even know who you are. Someone has to look out for our best interests.

And this involved everything from financial to personal hygiene, to being able to function everyday. There is no stauncher supporter for the caregiver of a dementia patient than me.

I have for years tried to get law makers to understand we need caregiver funding. Funding to where the caregiver could leave their job, and get 80% of their salary paid to them to take care of their loved one.

Some say this will never work. They aren't opened minded enough to see that this would actually save millions of dollars every year. The need for placement would not be so soon and there would be job opportunities for those who need to leave employment to take care of their loved one.

It is and would be a win, win. But it has to be a substantial amount of funding. This can't be like $400 a month. No one can survive on that amount.

 Try to convince the people with the purse strings, i.e.: Congress. I was in Washington DC three years ago trying to do just that.

I would start out by saying by the year 2050 dementia would cost our health care system some 12 trillion dollars annually. That at the time was our national debit.

They just sat there with this deer in the headlight look. Here is why nothing gets done in Washington DC.

Nobody cares. And no one wants to hear that. You will see petitions that you can sign, you will have people tell you write your Congressman.

And you will have people tell you they are working on it. Their not. And they won’t.

And the reason for this is simple. It’s called job security. There is only one Congressman who has had a Bill even get to the floor of the Senate that deals with increasing funding for dementia.

One. The reason again is simple. The Congressman who did this, some said he was courageous. He wasn’t. What he was, was at the end of his tenor.

He was retiring, and he knew that bringing a Bill to the floor that would increase taxes would not hurt his political career because he was retiring.

There is not one Congressman or Senator for that matter that will entertain the idea of any Bill that will increase taxes. But they behind closed doors to it all the time with their lobbyists.

You see lobbyists can get them re-elected. Raising taxes won’t. So write your Congressman. Call them. And sign your petitions.

I sat across the desk from some of the most powerful men and women in our Gov’t and I can tell you without hesitation, they don’t care.

You have heard the old saying, “If it doesn’t concern them, it won’t happen?” This could not be more true than in Washington DC.

What can be done to fix this? We need change. We talk about Hope and Change…well we need change in Washington. Get people elected who will do what is right for our country, not what is politically correct.
If you’re waiting on Washington DC to help with caregiver funding or dementia funding for that matter, you have missed the boat.

One day. One day this will happen. But certainly not in my lifetime. Or in this generation in my opinion…

And this is not a political stand. This has been going on for decades in Washington DC. It’s the fault of both parties. It is and it has been.
       
 In the meantime this all falls on the shoulders of the caregiver.
I am so indebted to those around me, who look out for me. Caregivers are indeed the backbone of this horrible disease. Dementia does effect more than the patient.
If you don't know that by now...you will.

Monday, June 2, 2014

The role of the caregiver

Caregivers and their roles. I think what I see happening the most that needs to be changed for caregivers, especially in the beginning of the diagnosis is that caregivers/family members try to do everything for the patient.

It's a normal thing. Your loved one was just diagnosed with a terminal, progressing disease for which to date there is no cure and no slowing the progression of it.
Who wouldn't go over board a bit? The thing is, the more the patient can do for themselves the longer they will retain what they have.

In other words, if you do everything for them, then when they do try to do smoothing for themselves it is more difficult simply because they haven't been doing this all along.

Someone else is doing it for them. Granted there are things that you will need to do. And these things will become more and more frequent. But let them do what they can.
Especially in the beginning of the disease. I remember waking up one day and my phone was nothing more than a paper weight to me. I had no idea how to do anything with it.

It was simply gone from my memory. And with this disease, when something is gone, it generally is gone for good.

I also woke up one day and had lost the concept of time. I could and still can tell time, but I have no concept of it.

Then I lost my ability to read. I can still read, but I cannot read anything over three paragraphs. To try to do so is just frustrating to me. I can't remember what I read, so after a few paragraphs it's just greek to me.

So, things will be lost. The ability to do the simplest of things. And you will never know when this will happen. I know patients who are further along than me in this journey and they can still read entire books.

There is no normal. Only our "new normal". So let your loved do what they can..."While They Still Can..."

Dr. Visits

My doctor appointments went from in the beginning once a month, to once every three months, and now they are every six months. This has all occurred in the last five years since my diagnosis.

The reason? Progression. This disease does progress, yet the progression is slow, but steady. I have had to go twice in-between appointments because of things that have come up.

Every appointment I had been to was the same. We'd go, sit and wait, see the doctor and be done. The thing with us, we have been going to the same doctor for well over thirty years.

He is like a friend, more than our doctor. We talk about playing music, his labs and our dogs, flying planes, etc.

It was like a little get together every so often. Which was fine with me, I knew there was nothing he was going to do to "fix" the symptoms I was having, at best he could do was to relieve them if that.

I have been on several medications since my diagnosis. Some for stress, some for anxiety, some for nerves, some to help me sleep, some for my nightmares and some for dementia itself.

The thing is, every time I would go the doctor, he like other doctors would just talk, observe me, listen to my lungs and the nurse would already have my vitals for him to see.

For some reason every visit I was there, I was having what I call a "good day". Or at least was pretty good at the time of my appointments.

"How can that be?" you ask. I haven't a clue. But for the most part, I was doing pretty good under the circumstances on every appointment.
Until one day. One day about a year ago or so I went and was having a terrible day. Things were closing in on me, the stress was unbearable, the mere fact of going to the appointment was stressful.

At that appointment, he got to see for the first time with me, dementia. And it scared him. He got to see what I live with that day. In the past like I said I had for whatever reason never been experiencing a "bad day" when I had gone.
This concerned him so much, he tripled my mediation that day. Not all of it, but the anxiety, stress and nerve meds were increased.

The point I am trying to make here, and it is a point that many a physician misses, is that even when they see a dementia patient, they may not be seeing dementia.
If we are out of town, no one I encounter would ever know there is thing wrong with me, if not for me having Sam. He is of course a dead giveaway that something is wrong.
But no one knows what. I am asked if you can believe it all the time, "Whats the dog for?". I would never ask any one with a service dog why they have one. For one it's none of my business, and for another it's just rude.

But again, keep in mind that when you take your loved one to the doctor, that doesn't mean for a second that the doctor see's what is going on with them.

This disease has ebbs and tides. It comes and goes, especially in the early to mid stages of the disease. So, write down everything that happens with your loved one so you will have something to go by when they ask "How are things going?"
My doctor now knows when I say I am fine, that isn't really the case. Doctor's are with your loved one maybe twenty minutes. That is a short period of time to come up with them trying to evaluate how the patient is.

And one more thing to think about, if your loved one is having a bad day and they are scheduled to see the doctor that day what harm would come if you simply called and explained the situation and rescheduled?

It beats trying to get your stressed out loved one into the car, drive to the appointment and sit and wait to be seen. The bottom line is what harm will come if you just don't go that day?
Probably none. And you will be well ahead of the game if you just say, "Mom is doing good today and for me to try to get her to your office would just compound things."

Unless there is some underlying medical issue nothing is going to change if they miss one appointment. Not one thing...

I have Dementia, Dementia doesn't have me

I have Dementia. Dementia doesn't have me...

Write this down. Live by it. Whether you are a patient, a caregiver, or a family member. It is very important to know that you have this disease.
The disease dose not have you...we all have our own identity. And dementia cannot take that. It can take our minds, but never our soul.