Monday, September 29, 2014

Time is my enemy, I will use it wisely

I remember the Neurologists telling me "You have Alzheimer's. A slow progressing disease for which there is no cure, and it is terminal."
I looked him straight in the eye, took a moment to gather myself and said with the best voice I could muster up at the time, "Tell me someone who isn't terminal. We all are. I am lucky in a way. I have been told my time is limited. I will use that time wisely."
Most people think that at the time they are diagnosed that this is the end. When in fact, it should be the very opposite. It is the beginning of really knowing that you have put things into perspective.
You have to have a plan, starting right then. Not two months from then, or two years from then. The sooner, the better.
Many make the mistake of never having a plan and never changing anything as if this is all going to go away. It won't and it don't.
Some patients obviously progress faster than others. And much of it depends on if you have had dementia for some time, even before you diagnosis.
If you knew something was wrong but put off being checked for whatever reason. No one can tell how long you have had dementia. If you run into a doctor that says they can, it's time to look for another doctor.
I can honestly say I have spent my time since my diagnosis well. I could have crawled up on the couch and watched Dr Phil or something else just as useless.
But I decided to tell what it is like to have this disease. How no matter what you do, it changes you. And there is nothing you can do about it. You can learn to deal with it the best you can, or you can deny it.
Many people choose the latter. And that's fine. You can't make someone accept this. They have to want to on their own. Everyone has their own time table for things like this and some never come around.
You don't have to accept this. Not at all. But by accepting it doesn't mean you have given up, what it means is you understand what is happening and what is going to happen.
Even then, you will have days when you say "I just can't take it one more day", this can happen and most likely does to many patients and caregivers.
I wish I could say it will be easy. I wish I could tell you it will get better. The thing is, it won't. Take one day at at time. What you get here on Mp is more info than you will get in any twenty minute doctors office visit.
It is imperative they you continue to see your doctor. It's just that not a whole lot is going to be done. Here, we support, we understand, and we are family.
And simply put, you can't beat that...

Fear and Dementia

There is a fear that goes along with dementia. But that fear begins long before diagnosis.
Especially if someone in your family has dementia. You will hear from very prominent people that dementia is hereditary. I have to disagree. You may be more likely to have dementia because it ran in your family. But not all cases are hereditary.
I know this only because no one in my family has ever had dementia, or any signs of dementia. So, me being the first to be diagnosed in my entire family on both my Mother and my Fathers side, kinda blows that theory out of the water. At least it does for me.
Many times you will hear someone proclaim, "Am I getting Alzheimers? I can't remember some thing." or "I have to be aware, watch what I eat and do, because my Mother had Alzheimer's and I don't want to get it through her."
The thing is, you will know. This disease is nothing like forgetting something. It's not like forgetting where your purse is, or whether you locked the door when you left the house this morning.
Think of dementia as this, you didn't misplace your keys. You have your keys in your hand, but you have no idea what they are for.
When you find yourself forgetting things, and then remembering that you forgot them for example, this is nothing like dementia.
Having dementia you lose the ability to remember you forgot something. It's gone. Most likely not to return. You can remind your loved one of something, be it important, earth shattering, or just can remind them daily, hourly, even more often and it won't do a bit of good.
They have lost the ability to recall what you have told them, minutes, sometimes seconds after you told them. I have a terrible time following conversations.
It's not that I don't pay attention, the problem is I cannot remember what has been said, only minutes or seconds later. To say this is aggravating is an understatement.
And the real kicker is, it gets worse. And this doesn't just happen a couple of times a day. It is constant. All day, every day.
Most days I am mentally exhausted. Say you are doing a project. Or remember when you cramming for a big test. Remember how mentally drained you felt when the project or test was over?
That is what a dementia patient deals with all the time. It never stops, it never slows down.
Here's something for you to try to wrap your head around. Even on my good days, things are bad. That's the things with dementia. It never leaves you for one second.
I am not telling you this for pity, or to cause you to worry more about your loved one more than you already do. I tell you this, so maybe, just maybe you will get a glimpse of what it is like to live this horrible disease.
My day starts with confusion the second my eyes wake up. I think sometimes this happens even before I am awake.
My day ends with fear. Fear of another nightmare. How bad will it be? Will I just wake up screaming, or will I be awakened by my wife because I have hit and kicked her repeatedly? Once I even was choking her.
And in between all of this, from first morning till bed time, there is nothing but confusion, constant forgetting things, stress over the littlest of things, and fear.
There is always fear. I tell the story at my speaking engagements of making life and death decisions in law enforcement and EMS, for over twenty four years. In seconds you have to make crucial decisions, and in that line of work, you don't have time to think about things.
You do what they call muscle memory. You do things out of training alone. The constant barrage of training it takes to be proficient in these professions.
Now, I find myself standing in front of my dresser each morning. Wondering which drawer my socks are in, and then when finding the right drawer, I stand there wondering what pair to wear.
This can take up to three, four, even five minutes. And the really bad part is I have basically two colors of socks. Brown and white. But you would think I am in Macey's Dept. store trying to choose from dozens of socks, and hundreds of colors.
My point it this disease progresses. And today may very well be the best day your loved one ever has. Ever. Hold on to the moments they are with you.
One day they will be fleeting at best. Take one day at a time. And never, ever take for granted what time you spend with them. Do this, and in the end it will still be hard, but there will be memories.
Memories that you will have till the day you die. We don't. I have no memories, least not the way most people do. Yesterday doesn't exist in my world.
I can tell you what Phyllis June and did thirty years ago, but I have no idea what day it is today, or any day for that matter. And I won't ten minutes after I am told. I have no recollection of yesterday.
If someone would offer me a hundred dollars just to tell them what I had to eat last night for dinner, I may as well try to tell them the why the sky is blue, or how many stars there are in the galaxy, or how much water the ocean has in it.
I couldn't. And I can't. I have no idea if I ate this morning. And I won't four hours from now either. Patients don't have any concept of time. But that is a whole other topic I will post about one day.
Time is my enemy. Sounds like a good lyric for song....

Fall and Sundowning

Fall is here. And this the time when "sundowning" can be more prevalent than ever. The days get shorter and shorter.
I notice it already, but I am outside most of the time and its easily noticed. The days are getting shorter, and we will be turning the clocks back here before you know it.
That will make a bad situation worse. I want to tell you there is a whole host of thing you can do for "sundowning".
From turning on all the lights in the house before it even starts getting dark, to changing their routine, ever so slightly. The best way to find out ways to help with "sundowning" is by researching it.
I can tell you this, from a patients perspective, there is nothing that helps me. Nothing. Not lighting up the house like a Christmas tree, not changing my routine, matter of fact, my routine changes for no one.
Those around me learn to adapt. That is much easier than me changing one thing I do for anyone. It will be a snowball effect. Keep this in mind when someone suggests you change your loved ones routine.
They have a routine, even if you don't realize it. And it is very, very important that they stick to it.
Just be aware, the days are getting shorter. And "sundowning" can and will be an issue. If it is now, it will get worse. It does for me and ever other patient I know.
It isn't something that just may happen. It has to do with our internal biological clock. It just isn't what it should be when we lose so much daylight, and we have to endure all those dreary, dark cloud days that are coming with winter approaching.
You don't have a be a dementia patient to have issues with "sundowning". And "sundowning" doesn't always happen in the early evening. I can have bouts of "sundowning" in the middle of the day, on a bright sunny day for that matter.
But you have to deal with dementia every day. Every hour of every day. Every minute. This "sundowning" thing is just an added bonus we patients have to cope with, or try to.
So, do your best to learn about this symptom. And try everything you can, then try everything you can again. It's all you can do. What doesn't work today, may tomorrow. And what works today, may not again. Ever...

Sunday, September 28, 2014

You May Say I'm a dreamer.. But I'm Not The Only One. John Lennon

Thursday, November 25, 2010. About 4:30am. After days of trying to figure out how I was going to get my questions about this disease answered, I decided to take things into my own hands.
Many times when you do something, knowing it is the right thing to do, people will follow. I knew the message boards on the Alzheimer Association site was not good for me. I had been there, asked a couple of questions and waited hours for a reply.
In fact, I logged off. Went back to their site the next day and tried to find the answer then.This created a whole new set of problems. I had no idea which “room” I was in when I posted the question. I
had no idea how to get to that “room” even if I had remembered. So I took that and built on it. Why not use social media to do the very same thing. Facebook came to mind.
I had a FB account, I was rarely on it, but I knew that millions, tens of millions of people were on FB and it was in fact addicting to some.
So why not use FB to work for me? I knew there would be the stigma of how FB is, what is on some of it’s pages, there would be “lurkers” to deal with, and other problems as well.
But if it was done right, I could start a “closed group”, invite members to join, under their real name. Not some nickname that is used on many other support group sites. It’s hard to take anything anyone called “Blackjack” says seriously.
So we had to have members joining use their real names. And we had to see their FB page before accepting them so we would know they are who they say they are.
Some in the beginning were offended by us wanting to see their FB page. Some rant about it to this very day. But, for the few who didn’t think that was necessary, it was and it is.
We have a responsibility to every one here that when someone joins, they are who they say they are.We deal with life and death issues. And were not you typical FB page, so you either let us see your page, or that is a red flag, and you simply won’t be added to Mp.
FB being a social networking site, it’s odd for anyone who is on FB not to want us to see their page. It is, after all about social networking. What would social networking be if you don’t allow any one to see your FB page?It took time to get Mp going.
The first few months we were at like a hundred members. Then the next thing you know we were at several hundred, and it was growing. Slowly, but surly. We were doing something right.
Members came here and instantly were welcomed by our someone on our admin team and they felt they were at home right away. We have total strangers sharing their deepest, darkest secrets about this disease.
Things they won’t and can’t share even with the own families for whatever reason. I was told by some very prominent people in the dementia world that having caregivers and patients on the same site would never work.
My answer was, “It’s the only way it will work”. And Mp was born. Now we are approaching 9,000 members. From all over the world.
All walks of life, all different religions, some no religion at all, some devout. We have young, we have old. We have doctor, we have lawyers, we have play writes, we have authors, we have PHD’s, we have teachers, and we have patients and caregivers, together. Yes, together.
And to think this was all set into motion by a patient. So, no one is going to ever tell me that when you are diagnosed with dementia your life is over. Mine in more ways than one, just began.
This brings me to the reason for this post. Reluctantly I had to make some very hard decisions in the last year or so. I wanted us to become a non-profit organization. And with the help of some very talented people on our admin team we accomplished that.
Now, to sustain your 501(c) (3) status, you must have other sources of funding. We not a group that can do car washes, and were not a group that can do bake sales. The kind of money we are needing, it would take you decades to get from either anyways.
So we came to our members for donations. We have never expected to get the bulk of our funding from our members. But, once again you came through. To date we have collected close to two thousand dollars from our members alone.
This is nothing short of a miracle. Not that I didn't think we wouldn't get support from you, but having dementia I know how this puts an huge financial burden on the families.
So I say, “Thank You”.And I have some news. Fantastic news to be exact. We have been awarded our first grant as a non-profit.
It is a large grant that we had applied for in my area here, and will indeed go for startup for Memory People, Inc. but it will also allow me to start up local support groups here locally.
It will also be used to springboard us to other grants, just be receiving this one and using it to change lives. Once again I say “Thank You”.
We have a team of grant writers who without their hard work and dedication this wold have never happened.
Things will now start happening. This is huge. And it all started with one small pebble.
This takes me to the infamous lyrics that John Lennon penned so many decades ago…
“You may say I’m a dreamer…but I’m not the only one.” “I hope some day you will join me, and the world will be as one
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Tuesday, September 23, 2014

There is enough of dementia to go around. It's not a competition.

There have been many things said about many organizations who are in the business of Dementia. And believe me, that's what it is. A business, to the tune of billions of dollars a year.
I find it odd how some compare what one organization does to what another organization doesn't do.
Like there is some sort of competition to see who can do more, see who can get the most money raised, or see who can do one thing better than another organization.
Many times in the past four years we here at Mp have been compared to many other groups, but mainly the Alzheimer Association. Why? I have to believe because they are considered the "Mother" ship when it comes to Alzheimer Disease.
They have the members, they have the Gov't, and they have the funding. I say "Thank you". What they do, they are second to none. There is not another organization that can raise more money, consistently than the Alzheimer Association. None.
That being said, let me tell you how the Alzheimer Association has helped us...
Like many, when I was diagnosed, we were given no information. We had just left one of the top Neurologists office in the State of Ohio, yet he had diagnosed me with "MCI...(milld cognitive impairment) probably of the Alzheimer type.
He gave me a prescription for the Exelon patch and we were out the door in seventeen minutes. No pamphlets, no 800 number to call, no instructions on who to call, where to go, or what to do. Nothing.
Sound familiar? It should. This is common practice in the dementia world. The thing is you don't know that then. You don't know anything then. You learn all of this later.
But how? When you are first diagnosed many things happen in the span of, in my case seventeen minutes. There are so many emotions that come into play.
Fear. Disbelief. Anger. Pain. Frustration. Sympathy. Guilt. And the most common of all...Denial.
Yet, there are not answers. No one tells you what to do, what to expect, and what is the future. No one tells you that everything will change.
Some will even tell you that this is a slow progressing disease, and they are working on a cure. That should make you feel better. The only problem with that is, many times it isn't true.
This can be a slow progressing disease. This can also be a disease where the patient won't know anything or anyone in six months. It can also be a disease, that yes they are working on a cure, but who is "they" and where are "they" at with their research?
I have been hearing that "they" are working on a cure for going on five years now, and "they" aren't one bit closer than they were when I first heard the word "they".
I know now, "they" are research scientists who have been working on a cure for decades, probably longer. When you get the whole grasp of what is happening here, you can't help to feel duped.
I have said for years, a cure is what we all want. But most of all, I want someone to come up with something to make my life at least tolerable. Make it so I can function. Make it so I can be close to "normal".
That hasn't happened. And again, I doubt it will in my life time. I take about a dozen pills day. Only one is for dementia. And that isn't even a pill. It's a patch.
And none of the medication I take works. We all our looking for a "fix" to this and there is none. The pills I take keep me so I don't have a nervous breakdown.
No one could deal with this disease without medication that is designed to lesson the symptoms. They don't stop or slow the disease in any way. They make it so you can deal with this thing we call dementia.
After my diagnosis I told myself I would learn all I could about Alzheimers Disease. The first thing I learned was that Alzheimers Disease is but one of dozens of diseases that is under the umbrella of Dementia.
To me, they are all pretty much the same. Many have the same symptoms, but some patients are either further along, or progress faster for whatever reason.
I searched the web. Knowing very well that you cannot believe everything you read on the internet. I did find a site, called the Alzheimer Association.
Had no idea what they did, or who they even were. Why? Again, no one told us. I filled out a form for someone to contact us and I received a call within an hour.
I explained what little I knew, told them about my diagnosis and I told them we had questions, many, many questions. The woman told me that they could have a representative from the Alzheimer Association come to our house for a visit if we like.
I of course agreed. She told me to have my immediate family there. And they would be someone arrive two days later.
They did arrive. And I can tell you we learned more in the three hours she was here than I had in past five years of having my memory loss. She went into great detail about what was happening, what was going to happen, and what we needed to do as a family.
The Alzheimer Association worked with us from that day forward. I will never able to repay them for what they did for us. I have done many speaking engagements for the Alzheimer Association every time they ask, I do it and I am glad to these for what they did for us.
Then came the day. The day when things change. And things do change with everyone. Someone in the Alzheimer Association decided it was no longer economical for them to do in home visits.
They looked at it, and not only was there not the funding for in home visits, but they decided that it was putting the people who did these in harms way.
I don't know if every chapter of the Alzheimer Association did this, or just the one in our area, but the decision was made that if we had any problems, we would now have to go to a city where their chapter was.
In our case that would be Akron, Oh. I think that is the chapter that was working with us. This became almost impossible for us, and it was impossible for many.
But change happens. The Alzheimer Association is more about research then they are support. Our chapter here for instance hasn't had a walk for a cure for three years now.
They do have a support group of sorts. One that we went to for over a year. But it too was becoming something that didn't help. We would go, there would be maybe three other people there and the facilitator would read to us.
There would be maybe a half hour of discussion, and sometimes a video to watch. The one video that we watched was the one that broke the camels back for me.
It wasn't a DVD, it was a VCR...the thing was about twenty minutes long. It looked to have Mrs. Ward Cleaver in it. Doing her housework in high heels and big red ear rings.
It then showed her and her husband in a doctors office. The doctor was smoking while talking to them...this is how old the thing was. And like I said, we were read to a lot.
What happen here to us, to the people who live here was a total breakdown of the Alzheimer Association here locally. Now that is not to say that things like this happen everywhere. But it did here.
The point to all of this is that every organization is not for every one. I knew that when I started Mp. We know that Mp is not for everyone and we will be the fist to tell anyone that if they are not happy here, we want you to find a site that is suitable to you and your needs.
And...everyone makes mistake. We have here. The Alzheimer Association has. Why? Because we are all human. I think it was a huge mistake to stop the in home visits.
There are simply many if not most families who cannot for whatever reason load their loved one up and come to a AA office and get help. They just can't.
But again, this was a decision that was made and I don't know if it was just here in our chapter or if that is the norm now everywhere.
I will defend the AA for what they have done for us. The thing is, its not for everyone. No one site is. No one organization is. So comparing one group to another is not in my mind the thing to do.
We are all about Awareness and Support here. Like I said, the AA is about research. They do support, but most of their efforts are in research. And I am glad they do.
We all need one another. There is plenty of this disease to go around. No one group or organization has the corner market on dementia. If they say they do, you are at the wrong place.
In my humble opinion.

We Need Caregiver Funding

I have been beating the drum for caregiver funding for over four years now. Anyone who deals with this disease in any way, knows there is a need for caregiver funding.

Getting it, is another thing. What needs to be done, has to be done on a federal level. There needs to be a Bill passed, where caregivers would get funding that would make a difference.
I am not talking about three or four hundred dollars a month. That is what is offered around here. My wife is approved to get funding for caregiving, being my primary caregiver.

To the tune of just under $300 a month. Now, we understand that their has to be limits on funding. But less than $300 a month is nothing more than a insult.

Whoever comes up with these figures needs to be fired. When in Washington I sat across the desk from some of the most powerful people in the world.

Men and women who can change lives. Make decisions that would actually matter. And they of course work for us. The problem is, as it always in Washington DC, no one cares.
They will sit there, look you straight in the eye and lie to your face. They are experts at it because they do this day in and day out. I call it "Who can lie the best club".

Because the better liar you are, the more likely you are to get re-elected. And believe me, getting re-elected is all that matters in Washington DC.

From the day these pin heads are sworn in, they start their planning on getting re-elected immediately. It's all that matters.

I personally spoke to four Congressman, and five Senators. Each one of them lied to me. I knew, they knew it. But, it is what happens in Washington. And that isn't likely to change anytime soon.

I remember someone on Mp a couple of years ago posted about writing their Congressman, and Senator's about funding for research for a cure for Alzheimers.

They went on to say how each and ever person should do the same. I had to sit on my hands to keep quiet, and not say what I wanted to say, what needed to be said...
And that didn't work. I began to tell the story of being in Washington and talking to these pin heads. How half of them were not even in town while we were there to meet with them.
How we met with their staff, some of who were just out of high school. It was a joke, it was demeaning and it was a slap in the face to the Alzheimer Association who put this whole thing on.

Most who were in the group I was said nothing. Which I still can't understand to this day. But I didn't. I told each and every one we met with what a farce this whole thing is.
I told them not a one of them had the backbone to sponsor a Bill for caregiver funding, because they know all too well anyone who sponsors a Bill with the economy the way it is, is not likely to get,,,you guessed it, re-elelcted.

I told the member who made that post that day, that instead of writing their Congressman or Senator to save a tree instead. In other words don't waste the paper or you time.
This has always been been my feelings on politicians. They do one thing and one thing only, and that is to get into office, and work to stay there.

Bob Gibbs, Congressman for the State of Ohio, is a perfect example. Bob was farmer, a hometown type of man. He ran on that of course because people can relate to that.
I met then, Mr. Gibbs at our local fair here, because that's what people do who want to get elected, they go to county and state fairs. I told him of my idea of how to implement caregiver funding. On how the Gov't could make a difference, really help caregivers.
Instead of the $300 a month now offered. Mr. Gibbs listened intently. Because thats what people do who want to get elected. He also told me if elected to contact his office personally and he would set up a meeting and get things going on caregiver funding.
That was three years ago. I have called now Congressman Gibbs office many time in the past three years, and have yet to have him return my calls.

Why? Cause that's what people do, after they get elected. I'm not on the bandwagon to smear Congressman Gibbs. He's no different than the rest of our so called elected officials.
Once in, they do nothing they tell you they will in advance. But when it comes time for re-election, you will them damn robo calls night after night, and every once in while you will be invited to sit in on a "round table" discussion.

This is where you can call a 800 number and be in the call with your representatives. The thing is, I have done this also. They all have what they call a "call screener". You tell them what you want to ask, and if it sounds reasonable, or important, or more to the point, if it is politically correct you will get to speak to the representative.

It's a club. It's one big club, and you and I aren't in it. Caregiver funding? It can be done. It should be done. And it could be done with the stroke of pen.
But I for one believe it will never happen. Not in my lifetime. Why? Because there is no political upside to caregiver funding. All this will do is raise taxes, and everyone in office knows, if they summit a Bill to House of Representatives for a vote that raise taxes, it will never pass. Never.

Unless of course you have money. Lobbyists. That's what we need. You need someone to go to Washington every day and promise these pin heads something in return.
This of course is called "pork". Fattening up a Bill, where the constituents get what they want, but more important the Congressman or Senator gets his piece of the pie.
It's Washington. Nothing gets done. Nothing ever will. I had about five minutes, one on one time with a man many will know. Mr. Newt Gingrich, who was in the Clinton years the Speaker of the House.

I told him about caregiver funding. I also to told him how upset I was to be in Washington and half the Senators and Congressman were not there. They were once again gone for the month. Knowing that we were coming and representing the Alzheimer Association.
Mr. Gingrich told me, "I know your frustration. But I can tell you this, the people you will deal with, the staff, they know more about what happens and how to make things happen in Washington, then the Senators do".

This is what Washington has to offer. So go ahead, write your Congressman, call you Senators. I quit doing that a long time ago. And anyone who say you can't get any help if you don't keep trying...

We do more by accident with it comes to Support, then any one person Office on purpose. We help more people in one day than these people do the entire time in office.
Like I said, it's a club. And you ain't in it. If you think other wise, well...they got you too...

Monday, September 22, 2014

Sleep Deprivation and dementia it's a vicious circle

Sleep disorder. Sleep deprivation. That's what the professional terminologies are.
To a caregiver, who already is beat down to a pulp, lack of sleep can heighten any little thing.
To a patient, lack of sleep is horrible. I have had sleeping issues for years now. I rarely get a good nights sleep. Just typing this I am fighting back the feeling of drowsiness. But to go back to bed, simply won't work.

Nightmares are my nemesis. When you have dementia, you are mentally exhausted almost all the time. Couple that with the lack of proper sleep and you have a time bomb waiting to go off.

I have been on many medications for sleep issues, none have worked. The best advice I have ever been given was from our family physician who said, "You will sleep when you get tired enough."

I told him I find myself fighting to stay awake most days, because of the lack of sleep I get at night. Most think you can't sleep because you are taking naps in the daytime.
He told us, when you are tired, sleepy, don't fight that feeling. It just creates stress. What does it matter if you need to take an hour to two nap in the daytime?
We are wired to think if you sleep a couple of hours in the daytime, its no wonder you can't sleep at night. This is a fallacy. Especially with dementia.
Think of the last time you were or felt mentally exhausted. Now try to imagine going through that daily.

My mind races every second I am awake. It is a struggle to get through the day, every day. Some are worse of course, but for the most part you spend your entire waking moments in totally confusion.

This begins in the very early stages of dementia, and continues to progress as the disease does. I consider myself mid-stage with dementia. I am not in any one single stage, I don't think anyone ever is till the end stage.

You can go from the different stages in a matter of hours, so to claim your loved one is in a certain stage is not completely accurate.

Many of us do the same thing. We look for something, anything that will "fix" the issue of not being able to sleep. I can tell over the years I have tried everything.
Medications. No TV. Reading, or trying to. Sun bed. Hot showers. Music, and on and on. If there is something we haven't tried, it's because we haven't heard of it.

We have tried every holistic product on the market that claims to help with lack of sleep. What this all boils down to is once again a disease of the brain.
Sooner or later we all sleep. We have to. It's getting that restful full nights sleep that patients and caregivers are lacking. We all have experienced the feeling of being "deadbeat tired", this is the feeling I have most of the time.

I am physically and mentally drained at times. You push yourself to get things done. You get agitated when things don't go you way, and it's mostly because of the disease, and of course the lack of sleep.

There is nothing that we have found that helps me. All I can say is that your loved one will sleep. The problem lies in that they may sleep in short periods.
You may get them down, finally at say 10:00pm, but they will be wide awake and ready to go by 1:00am, then back down by 2:00am, only to be ready to go at 3:00am again.
This cycle may continue, it may get worse. Couple the problems that dementia causes and add lack of sleep to that to not only the patient but to the caregiver, and you have an extremely volatile situation.

Is there a way to "fix" this? No. Some may never have sleep issue. Some may have them once in a while, some like me must learn to live with the them.
You will sleep. It may not be restful, meaning sleep. But the body cannot continue without sleep. This is when the brain is at rest, some doctor's will tell you.

I can tell you from experience, there is no rest, even when sleeping. Stress causes a lot of this. And the disease does as well, which causes most of the stress to begin with.
There is no clear cut answer. If you, your loved one, or both are suffering from lack of sleep, you know what I am talking about. The point I try to make is when you hear someone or read something about how to deal with sleep disorders, it's not a easy as it seems to "fix" the problem.

It's just not. I have been battling sleep issues for years. I don't see this miraculously getting better any time soon. This is one of those things you deal with it the best you can.
The human brain determines everything we do. And when you have a disease of the brain, everything is effected. Lack of sleep being just one.

It has nothing to do with drinking coffee, or having anything with large amounts of sugar close to bed time. This is what you will hear, because that makes it a solvable problem.
Just don't allow any caffeine after say 5:00pm. That seems simple enough, problem is, that will not solve the problem. Nothing has for me. You do what you always do, you learn to deal with it.

Coping is one or our greatest attributions. Learning to cope, or trying to cope with things we simply cannot change. But coping comes from, you guessed it, your brains ability to cope with any given situation.

Are we getting all this? It's like a merry go round with no end in sight. The thing is, lack of sleep is only one issue you as caregiver or patient may be dealing with.
There are dozens of other symptoms. And your loved one could have many all at once. Fear, anxiety, stress, agitation, loss of memory, eating disorders, and of course, lack of sleep are just some of what patients can be dealing with.

It's good to know that we are not alone. That is about the only thing that gets me through most days. So let your loved one sleep whenever they can. The thing the caregiver has to adapt to is sleeping when they do.

This of course is not feasible in some situations. Why? Because life happens. The world will not stop turning because your loved one cannot sleep.

The only thing this effects is your loved one, and of course you...the Care Warrior.

Sunday, September 21, 2014

To Place or not to place, that is the question

There are really only two answers. Two choices. Two decisions. Will I place my loved one? Or not?
Many times these choices we make are just like any other. They are made in haste, not thought out, and to be blunt, just wrong.
We usually make these choices under great duress. Simply because we didn't take the time to make them when we should have.
Making a promise twenty years ago, isn't how one decides if their loved one needs to be placed. It just isn't.
Things happen. Life happens. If the patient is 200lbs and the caregiver/family member is 110lbs, someone is bound to get hurt.
Patients in time lose everything. Their balance, their equilibrium, they're ability to do everything. You get a 200lb man leaning on you at three in the morning after having about twenty minutes sleep and you have problems.
Problems that could end up with one or both of you getting hurt. People don't think about what can happen. If they would weigh the bad against the good, the bad would win every time.
You can never place a loved one too soon. People think that statement is harsh, when in reality it's not. There are many things that will happen when you wait too long, and none of them are good.
This feeling guilty for yourself because of placement is a stigma that started long ago and includes any disease, not just dementia. You get a patient who has needs that are far beyond that of what a layperson can do or even understand, but yet they keep them at home because of some stupid promise they made decades ago.
Makes no sense to me. Never has, never will. Now if you have the means, and are able to keep your loved one at home, by all means. This is what everyone wants.
But, very few do, and that is just the cold hard truth. You want whats best for your loved one? Well, they want and deserve to be taken care of by someone who can do what needs to be done.
When you cannot do what it takes because of a bathroom mishap, you have to realize this is not going to get somehow miraculously get better, or you will get better at dealing with it.
These mishaps will continue. And that is just the beginning. There are a hundred things you must deal with daily, sometimes all at once, sometimes one right after another.
On top of all of this, you have to be sure their needs are being met. Are they eating properly? Is their intake and output what it should be?
Are they becoming dehydrated? Have you checked for bed sores, and do you have what is needed to care for them? And are you making sure they are turned once an hour to prevent bedsores?
Yes, if you can do these things and hundreds more, and keep your loved one at home, than by all means do so. But do the right thing. If you can't, don't wait till you cannot do this one more day.
Because believe me, the day you realize you can't do this another day, the person you love will most likely be with at least another week, perhaps longer, waiting on placement.
Rarely does placement happen in just a few days. All kinds of things need to happen. The facility you looked at, if you even did, has to have room. The doctor has to sign off that your loved one needs to be placed.
You have to have the proper payment in place. If it's medicare, medicaid, or private pay, whatever it needs to be handled before placement.
If you loved one is combative, you might as well tell them right off the bat. Cause if they become combative, they will either try to stop the aggression, medicate them so they will not be aggressive, or you will simply have them back home with you if they cannot stop being combative.
Im not talking being loud or what have you. I am saying if your loved one abuses another patient, or the staff. It will happen once. But the second time, they will have to leave the facility.
The facility can't and won't take on the liability of your loved one being aggressive or combative towards it's employees, or other residences. So, if your loved one has an issue with being abusive, or whatever, you may as well be up front about it in the beginning.
Placing someone should be an act of love, and kindness. Somehow, somewhere, the stigma has even gotten to this part of the disease, Where the family feels guilty for having their loved one cared for.
I don't understand it, and never will. I am a patient and have told my wife a hundred times I want to be placed. We have talked about my placement, and have for years, we don't treat it like the elephant in the room. I deserve to be cared for properly. She knows this and would have done this anyways.
But saying it out loud, telling others, then when the time come there is no question as to what is to be done. I wish you never have to battle with placement, chances are you will or you are right now.
Have a plan, then have another. Just remember it is the best thing for both the patient and the family when placement time comes. It just is, no matter what the stigma of this disease says...
Glenn Campbell, the poster boy for the Alzheimer Association, was placed less than a year after his diagnosis. Now my guess is the Campbell's have millions of dollars for private care, they live in a home that if you even see each other it's because you want to.
They could have opted for private round the clock care, but for whatever reason like I said, he was placed. It happens. More times than not. Don't let this happen to you and be the one one night, about three in the morning figuring out you can't do this anymore.
It's not good for you and it's not good for the patient...

Saturday, September 13, 2014

End of Life Decisions

I cannot stress enough how important it is to have an end of life directive. Call it a DNR, call it a living will, call it whatever. Just get something in writing from the patient that plainly spells out what they want in the end.
If they want food and water discontinued, that's their right. It's when a few family members are standing around the bottom of the bed saying things like "They wouldn't have wanted to live like this, we have to do something."
Of course they wouldn't want to live like that. But this is how the dying process goes. Some patients as in cancer patients can go through excruciating pain before dying, for months.
The thing that everyone wants is for their loved one to go peacefully, pain free, and not alone. This all can be accomplished with just a little planning.
In this day and age, there is absolutely no reason for a patient, any patient to be in pain. They have doctors who specialize in pain management. If your love one is in pain, or if you loved one seems to be in pain and can't communicate it, tell your doctor if he is unable to get the pain under control, you want a referral to a pain management specialists.
But again, this can all be so much easier if the patient just tells of their wishes before hand. The very week I was diagnosed we went to our attorney and had our will changed, put everything in Phyllis June's name, and I made changes in my living will.
Phyllis is POA over my medical and financial doings. She and she alone will make what decisions that need to be made, but they will be mine. She will just be carrying them out. No questions, no decisions.
My directives are clear. There will be no guess work. There will be no disagreement in the family. I don't want to be deprived of food and water. Period. My thing is the day you decide to discontinue food and water, you too, the one making this decision should quit eating right along with them.
You will hear people say, "It doesn't hurt, it's part of the dying process. Really? Well not for me it's not. It may not be what someone really wanted for me, but they will get their turn in due time.
When the time comes I indeed want to be placed in a facility that can take care of me. My wife is about 120lbs, soaking wet. I go about 170. It doesn't take a rocket scientist to figure out she is not going to be able to man handle me without someone getting hurt, or something bad happening.
The only decision she has to make is to know when it's time. And being in EMS for close to thirty years, this isn't going to be problem. We see family members keeping their loved ones home when they should have been placed months if not years and weren't .
Sometimes for monetary reasons, sometimes because they said they promised twenty years ago they would never place Mom. Both of these scenarios are wrong.
Promises were made to be broken. Anyone promising something like this twenty or thirty years ago has to be smart enough to realize life happens.
Things change. You promise to take care of your loved one, by keeping your loved one home and not caring for them properly, which happens all the time, but by doing this you are not taking care of your loved one, a promise you had made.

Friday, September 12, 2014

Implants and Wandering?

Here's a real thought provoking idea. If your loved one could have an implant, just under the skin, an implant of a GPS device that would guarantee you would know exactly where there are at any given moment...would you do this?
Some I imagine would never do this. Some would do it in a heart beat. We don't do some things we don't understand. But yet we would do anything to protect our loved ones.
I would venture to say that if you have never had a loved one wander off, you would probably not entertain this idea. But if you did have a loved one wander off, and if God forbid it ended in a tragedy, you would have done an implant if you had to do it all over again.
There is no right or wrong answer here. It's just what would you do to protect your loved one if available, and what would you never consider, at any cost???

Respect your love one with dementia

Everyone deserves to be respected. Most of us our taught at a very early age to respect your elders, which I think that should include everyone, especially your elders.
There is a stigma that goes along with being older. It started with me in the last year or so. I turned 61 last May and physically I feel as good as I did in my thirties, probably better.
I did some things in my younger years that would certainly not be considered healthy. But now, when one reaches a certain age, you are treated differently.
In spite of dementia or not, everyone who reaches this age, starts to get treated as an infant. I have seen this for years in everyday living, but especially in EMS and Law Enforcement even.
I suppose it's correct to say that some elderly people revert back to a infant type stage in the later years. But when their family talks to them as if they are an infant, and when their family treats them as if they are an infant, this is so wrong on so many levels.
Respect is the one thing that even dementia patients should never have to worry about, yet we do. I read some posts that I am sure if the roles were reversed, the caregiver would never want what is being posted said about them, ever.
One can express our limitations to caregiving without the gory details. This is a person we are talking about. Even if the mind is long gone, they are still a living, breathing, human being, and respect should never stop.
When you have dementia, everyone asks you all the time how you are. It's just that most don't know what else to say, or ask. But when you have dementia and for some reason you are at a certain age, we are many times referred to as infant like.
In our emotions, in our grammar, in our way of thinking, all of this could very well be true. But still, it gives no one the right to treat us as infants or child like.
I am not and would never tell anyone here what to post, all I am saying is be respectful. If your spouse, mother, or whom ever is having bathroom issues, there are ways of sharing that without some of the adjectives I have seen.
All I am saying is be mindful that even though your loved one has no idea what Mp is, has no idea you share your most intimate moments here, they would never want what is posted sometimes here, posted about them.
Nor would anyone else. We have to be truthful here. We have to be honest with one another. If not, we lose all credibility. But we also have to mindful of how we explain what is going on.
I personally never post anything here that I wouldn't say in public. But again, I don't go into some of the issues I have here. They can't be "fixed" and would suit no purpose.
All in all I could not be more proud of how Mp works. I knew there was a need, and anytime you have a need, you will be successful. I myself am not successful, but it is you.
All the members here that make this site the very best place to be for truthful, honest, and no sugar coating advice to one another. Sometimes we don't want to read the advice that is given.
That boils down to personal perception of what is going on in each and every situation. We can only suggest things to do with what is posted here by the member.
And that member sorts through all the suggestions and takes the ones that would work for them the best. Or in some situations, they use none of the suggestions.
Just be mindful of how much you info you give about your loved one. I am positive you will never read on Mp from Phyllis June about my bathroom habits, or lack of. Least of all in detail. That's the key, we can explain about some patients misgivings without degrading them. Or treating them childlike.
Very few members do this, and we are not the internet police here and don't want to be. What we want is for every member here, and ever members loved one to be treated with respect. That's all. And it's the right thing to do...

Dementia, a Constant Mental Strain

How is it I can tell you what Phyllis June and I did thirty years I can tell you exactly what she was wearing on our first date in 1977. how I know that we went to our first concert at Blossom Music Center together?
But I can't tell you for the life of me if I ate today. When you have dementia, nothing is like it was before. You lose everything, a little bit at a time.
The two hardest things for me is still the loss of time. I can tell time, but I have no concept of time. And the ability to read. I can read, but again anything more than three paragraphs and I have no idea what the first one said.
And I miss not remembering. Everyone takes their memories for granted, but when they are no longer there...yea, I think I miss the memories the most.
It's like missing something you never had. An itch you can't find. The not knowing if I have eaten today for example. I am sure I did. But then, did I?
I know that when I got home Rambo, our little dog was sitting on the front porch. He was supposed to be in the garage. I had some things to do and when I left I at least put the garage door down, problem was he wasn't in it.
Aggravating don't begin to describe not remembering things. It's a constant mental strain on you to get through the day. Not complaining...well, yea, I am...

Tuesday, September 9, 2014

Give the Gift of Memory People

Who do I call? Where do I look for support? What do I ask? What is going to happen? All of these questions are racing through your head after a diagnosis.
The problem here is getting the information you need. There are many organizations that have valuable information. The Alzheimer Association, Us Against Alzheimers, just to name a couple. I have worked with both organizations and praise both for what they do.
One, the Alzheimer Association is into research for a cure. Us Against Alzheimer's is all about getting laws on the books for dementia.
Both are important, and necessary. I have worked closely with both of these groups and they are professional in what they do.
But...there's always a but. As I stated the AA is all about research. And we all know we need that. What little bit they do for support is just that. Little.
I have worked with Us Against Alzheimers also, and like I said, they are all about contacting Senator's and Congressman to change laws for the better of the patient and the caregiver.
Here's the deal. When you are first diagnosed, you really don't care about research. You really don't care about contacting a Senator or Congressman.
You have questions, questions that need to be answered right now. Not two hours from now, not a half a day from now, and not tomorrow.
When I was first diagnosed I went to the AA message boards and after an hour, figuring out how to post, I did indeed post a question.
An hour went by. Then two. Then half a day. No response. Nothing. This was not acceptable to me, and I didn't see how it would be for anyone dealing with dementia.
The next day, I logged on again, and again it took my close to an hour to find out where I posted my question, and what I even asked.
The first thing that goes with dementia is your short term memory. When someone posts a question, you have to get these people an answer with minutes, not hours, or days.
You would be hard pressed to see a question or comment go answered on Mp for three minutes. Someone is always here. Someone always answers your question, or at least acknowledges that you asked one.
This is the number one reason we have Mp. I like everyone who dementia comes into their lives was told nothing at the time of my diagnosis. I was given a prescription for Exelon patches, told to put one on every day and come back in six months.
I go over this in great detail in "While I Still Can...". It is the first chapter titled "Seventeen Minutes". That's how long we in the Neurologists office, seventeen minutes from beginning to end.
When we left all we knew was I had just been diagnosed with a terminal disease, one that slowly progresses, there are no medications to slow the progress, and it is fatal.
Now, anyone who goes through such a heart wrenching experience has questions. They have questions they haven't even thought of yet.
I really think the fist few days are the worse for a patient and a caregiver/family member. There is little to no information given to you, and if you are computer illiterate you are pretty much in trouble.
Even if you turn to the internet, the info you will find there is no better than the person or organizations who is posting it.
Dementia is a huge business. And there are people making millions of dollars off of this disease. You have to be so careful about what you read on the internet, or sometimes even what your doctor tells you.
One member recently posted that their doctor diagnosed their loved one with dementia, with symptoms of Alzheimer's. What?
Of course if you are diagnosed with dementia, you will have symptoms of Alzheimers. That is what dementia is. Alzheimers is just one form of dozens of types of dementia.
But for whatever reason they are told that the person has dementia, and will have symptoms of Alzheimers. Which makes no sense at all.
I have an answer to all of this mumbo jumbo. All the what if's, the what nows, and the what do I do's...
The very first thing one should do, even before being diagnosed, is come to Mp. I am not saying this because I started it, I am saying this because it is true.
Even before you are diagnosed you will be told things like, "Check into long term health insurance. This will save you hundreds of thousands of dollars in the long run".
I so wish to this day, someone, anyone would have told us this. Such a simple thing to do, get a long term health care insurance policy, and then cancel it if the diagnosis is merely thyroid problems, or stress, or whatever.
But when you don't get long term health care in place before a diagnosis, you will be able to get if after the diagnosis, but few can afford it.
When I first posted about getting long term health insurance before even going to your local doctor, members thought what a great idea. Why was I never told this.
You won't be told this, and chances are in your state of mind, you will never have given long term health care a thought.
This is just one example of thousands of suggestions of what you will get on Mp. People pay big money to go to the "experts", when all they need to do again is be here with us.
We can't "fix" anything. We say this all the time. But guess what? Neither can anyone else. There is no "expert" who has all the answers. Nine times out of ten, these so called "experts" are not even patients.
So when I see people who join us recently and even the ones who have been here since the beginning, when they post about how Mp has indeed changed their lives, it is always overwhelming.
We are not in competition with anyone. There is plenty of this disease to go around. The AA is all about research. Us Against Alzheimers is all about changing laws. And we're all about support and awareness.
Support and Awareness. It's all we do here. Why? Because no one else does. We don't allow posts about the latest concoction coming down the pike, we don't allow posts claiming they have seen of a cure on the Dr. Oz show.
All of these things are nothing more than false hope. People who are diagnosed with this disease, and even their immediate family need support. They need questions answered.
What they don't need is for someone to tell them not to eat of aluminum pans because this causes dementia, or coconut oil slows the progression.
It doesn't. And to allow posts like this, we would be doing every person here a disservice. Some day, maybe something like coconut oil will indeed make an impact on the progression. But the truth is, we are not there yet.
So if you know anyone recently diagnosed, tell them about Mp. It may very well be the greatest gift you ever give them. Ever...