Thursday, October 30, 2014
Funny thing, when I get random emails from total strangers who are telling me their story, their story about their loved one having this horrible disease.
Just yesterday I received one saying that they had heard my interview on NPR radio.
That's the thing about dementia. Everyday can seem like Christmas, all the surprises. I have no recollection of doing any interviews for NPR, but then again I couldn't tell you what I had to eat yesterday.
When I do interviews, be it for a radio station, tv, or print, I always have either Phyllis June or Leeanne Chames in on these interviews for just this reason.
It's not that I don't trust who is interviewing me, it's just that I never have any memory of doing them. Especially if they are more than a day or so before they are released.
One thing is always constant, people want answers. And some turn to me for giving them those answers. I of course cannot and do not have the answers to most of their questions.
I know from doing many speaking engagements that the most important part of my segment I do is when I open things up for questions.
I never give any answers about what medication some should or should not be on. What I am willing to do is talk about what meds I take, why I take them and what they have done for me.
Being a dementia patient is nothing new. There are literally millions of us. But there are but a few who will take their experience and share it as I have chosen to do.
It's the right thing to do for me. It has made our private like very public, but both Phyllis June and I knew this would happen. We wouldn't change a thing.
I have met thousands of people who we would have never met, had I just chose to lay on the couch and feel sorry for myself.
The very best thing you can do for someone if you are a patient, is to share what you are going through. Everyone wants to hear how this disease effects me, and what we do to make things easier.
Once you start a conversation about this disease, all I have to do in most cases is sit back and listen. People will tell you their struggles. And it's not that I can do a thing about them.
What it boils down to is they are talking. Just like here. We don't solve anything, we can't "fix" any of this. But we do bring awareness, and we do support one another.
I have another speaking engagement next month in Illinois, a two day event where I am the closing key note speaker each day. Many will come up to us afterwards and thank both Phyllis June and I for what we are doing.
When the truth is, it is those people in the audience who are helping us much more than I could ever help them.
There are some humorous parts in my presentation. And there are some not so humorous parts. People will come away with one thing that is for sure.
They will gain knowledge from me being there, and simply by talking about what this disease has done to us as a family, and me as a person.
I am very honored to be asked to speak at the Memory Loss Conference 2014, in Springfield, Illinois, presented by the SIU School of Medicine Center for Alzheimer's Disease and Related Disorders.
The second day I am told will be recorded. So there will be an opportunity to see the presentation for those who can't attend.
It's that time again. Turn your clocks back this Saturday. The one thing that effects me and other dementia patients is change. Even subtle change can be stressful.
Everyone has an eternal clock. I have long lost the concept of time, but I do know when it only 5:00pm and its getting dark, it isn't good.
Sundowners. That's what it's called. This too is a word that is not correct, in my opinion anyways.
Sundowners is described as:
"Sundowning is a psychological phenomenon associated with increased confusion and restlessness in patients with some form of dementia. Most commonly associated with Alzheimer's disease, but also found in those with mixed dementia, the term "sundowning" was coined due to the timing of the patient's confusion. For patients with sundowning syndrome, a multitude of behavioral problems begin to occur in the evening or while the sun is setting."
They had this right, until the last sentence. Sundowning effects its victims during anytime of the day. It does not always have to be at "sundown".
Just dealing with the fact that days are shorter, can be a struggle for dementia patients. I have said many times, your loved one has a routine. Every patient has a routine. Even if you don't know their routine, they indeed have one.
Try setting the table of different way. Or perhaps something as simply as changing the bed clothes on their bed, can be very stressful.
And now because of the setting back of time, most will be eating when the sun has set or is at least in the process.
You will hear, turn the lights up before the sun begins to set. You will hear change the time you begin dinner. That way you can be through with it before the sun begins to set.
Again, you are dealing with people who have a routine. None of the suggestions has ever worked for me. I just have to deal with sundowning.
But for me, sundowning can happen in mid-morning. It certainly doesn't have to be at sunset. Like I said we all have eternal clocks and can tell when something isn't right.
Unless the patient is in the later stages, you can bet they will have difficulty starting Sunday. Everything changes. Not only the time. But they will know by their eternal clocks that something isn't right.
And with the littlest of changes, comes stress. Do what you can to help with this. Once again you are dealing with something there simply isn't a "fix" for.
We all have difficulties in the winter months when it gets dark at 5:00pm. Take that and throw in your routine goes right out the window and you don't know why, and the mere fact you are a dementia patient and you indeed have a volatile situation.
Some will say, "Just explain to your loved one what is happening. That it is indeed time to turn the clocks back."
Anyone who thinks this will help, has missed the boat. Remember, the first thing to be effected with dementia is ones short term memory. Many times people around me forget this.
My short term memory is all but gone. Has been for some time. So telling me the clocks were turned back, and why is waste of time. Pardon the pun, but it's true.
And most likely your loved one may have the ability to understand the concept of the time change. Problem is as always, they won't remember it from one day to the next.
Just be prepared. Try to make this time and transactions to the time change as uneventful as you can. Telling them this is going to happen, will not work.
Like I said, it's one of those situations where there is no "fix" to this. Something they can do that will help. And you may be one of the lucky ones who can re-arrange times and there may be no break in your loved ones routine.
That is highly unlikely. Nothing I have tried has helped me. And I have been dealing with sundowners for years. Not just at time change, but sometimes because it's Tuesday or whatever. And it doesn't have to be when the sun is setting.
That too is part of the stigma of dementia and is always told by someone who doesn't have the disease but yet thinks they know everything about it.
You know, the "experts". The ones who tell everyone what they need to know about dementia, yet doesn't have the disease, and sometimes aren't even around or care for anyone who has this horrible disease.
The time change is coming. The one and only real way to deal with the time change is to move to a state that doesn't recognize it. Arizona for example I don't think Arizona has a time change.
That is the only way to see that the time change doesn't effect your loved one. Move...and that for most isn't practical and will cause more problems with the routine your loved one has.
Just get ready, the time change is coming. And it will bring stress for patients along with it...
Tuesday, October 28, 2014
I watched both my father and mother die atrocious deaths. Cancer. It was a horrible death. The pain they both went through was terrible.
I have seen death, more times then I want to imagine. Working in EMS, Law Enforcement, you see things people do to one another and sometimes it just unbelievable.
Like many others I have always felt I had seen it all. But then this disease came into our lives and things changed drastically.
Nothing was the same, nothing would ever be the same. It's a terrible thing to know what is happening to you and not be able to do anything about it.
And also know that as of today there is no cure, no way of slowing the progression and virtually no hope for patients at this time.
You'll hear about the studies. There are always studies. I have seen study after study in the last five years I have been watching for things like that.
To this day, I can't tell you one study that was started that you hear what ever came of it. It's easy to tell the general public that a new breakthrough drug is on the horizon.
I personally gave up on listening to these "studies" or "breakthroughs" a long time ago. It's like show me, don't tell me.
I always try to remember how lucky I am. Seeing the tragic deaths I have seen, witnessing people I love and total strangers die horrific deaths. Some bed ridden for months, even years.
But still, having this disease is the worst thing I have ever dealt with in my life. The struggles that you face daily. The fact that you have for the most part all your faculties one minute and the next you have no idea what is going on around you.
Things change in the blink of an eye in your lifetime. This hasn't been that at all. It has been a steady decline, a progressive thing just like they told us it would be.
I remember one of the counselors we were working with in the beginning tell us at our dining room table,
"You have to change everything right now. Today. There is not one day to waste. Do the things that are important to you. Take the time to be with ones you love. This disease is unrelenting. And it will in time take your life."
We did change everything. We had no choice. I don't allow stress to be in my life. Sometimes it can't be help. But its very important to keep things very simple in my life now.
I wish there was an answer to all of this. There isn't. What works for me today may not tomorrow or ever again. There is no normal, only a "new normal" for dementia patients.
You will learn to deal with it, you haven't a choice. There will come a day in every dementia patients life that everything will be taken from there memory.
Even the ability to breathe will no longer be something they will do. The brain will simply not function, not know to breathe to keep you alive.
Sound horrible? It is. Take the time you can now to be with the ones you love. Smell the roses never meant as much as it does when you have someone who is battling this disease.
I hear birds now. Never heard birds before. I knew they were there, just never heard them. Its the simple things. Embrace them. While You Still Can...
Thursday, October 23, 2014
We have many new members here on Mp. And every time a new person finds us I think, another one who will at least get the support they need here.
Many times these folks come here not knowing what to expect, or really what to say. How do you post to thousands of strangers that your family doesn't get it, or you are at the end of your rope with no where to turn.
It only takes a few minutes of reading our posts here to see that we are not judgmental. Being a caregiver here you will see many posts and think that is exactly what I am dealing with.
I have always tried to post here about being a patient, how things go on a day to day basis. In hopes if I can explain to you the caregiver what it's like to live with this disease that will make your job in caring for your loved one easier in some small way.
When you first come here the one thing many have in common is, they have questions and they don't have any answers. This is the very reason this site was started.
I too had questions when diagnosed and could not find any reputable site to go to for answers. What we do here is unique, but yet so simple. We talk to one another, and we listen to each other.
How many of you have gone to a doctors appointment and asked many questions and none of them were answered, or if they were they were answered in a way you had no idea of what was just said.
The problem is, many doctor's try to smooth things over. They in most cases will tell you what you want to hear, instead of what you need to hear.
They will prescribe some medications, and you assume all these meds will surly make your loved one better. They won't and they don't. The harsh reality is at best any medication your loved one is on will only perhaps lesson the symptoms of dementia.
It won't slow the progression, it won't cure anything. And to this day there is nothing that will. Hard to hear? Of course it is. But that is indeed the truth about dementia.
All the home remedies, from not eating out of aluminum pans, to eating coconut oil on everything, to injecting water in to your loved ones veins, all of these things we have heard here.
When you are dealing with dementia you are at the mercy of this disease, and you will try anything that you think will help your loved one. This of course is what we do for the ones we love.
No one wants to see their loved one slip away a little at time, and not being able to do anything about it. The only thing worse is being a patient and realizing this is happening.
The most important thing you will learn here if you don't learn any other thing is you cannot control what is happening, or what is going to happen.
You have to have a plan. Then have another because chances are the initial plan won't work for whatever reason. You have to pick your battles. You will most likely lose every one of them.
Is it really that important your loved one hasn't taken a shower in several days? Is that something that a good dose of baby powder won't cure?
Is it really that life threatening that your loved one not go to their doctor's appointment? Unless there is indeed a underline medical issue, missing a doctors appointment for a patient who has dementia is not that crucial.
Three things that if you keep in mind that will make this journey for you easier. These things won't "fix" anything, but they will help you in caring for your loved one.
1) Are the safe?
2) Are the pain free?
3) Are they content?
If you can answer yes to these three questions, then you are doing the very best you can for your loved one. Nothing else is more important than these three things.
And they could be content one moment, and things become total chaos in another. They could be in pain and not be able to communicate or they could be putting you or others around them in danger by some verbal or physical abuse.
You will never see the day where you can say "I have seen it all". Because with this disease, you never have seen it all. Your loved one will do the most absurd things, things you would never have in a million years dream they were capable of.
You know why? Because it's not them. It's not their actions. It's the disease. It's always the disease. You will read many times here, "Why does my husband keep trying to cook, when he never cooked a day in his life?"
Or "Why does Mom sit in her chair and stare for hours out the window and say nothing, when she was so vibrant just the other day?"
Or "Why would my Dad lash out to his own children?" All of these things and many, many more caregivers have asked for answers. The answer is, they have a brain disease. The brain is most complex organ in the human body.
What is happening is on account of that disease. And nothing nor no one is going to "fix" what is happening. It will progress, and things will get worse.
Have a plan. Dementia knows no boundaries. When you are at your wits end, dementia is just getting started. I wish there was better information than what I am explaining.
And you can get better information on the internet about dementia, the problem is it won't be true. It won't be what you need to hear, it will be in most cases what you want to hear.
Some things we talk about here are very hard to read. That's because we don't sugar coat anything here. Will there be good days? Of course. But in time the bad will out weigh the good in every aspect.
Be ready. Try to remember it is the disease. And if you have to make those hard decisions the ones you swore you ever would...always do what is best for your loved one.
Not what you perhaps promised some thirty years ago...
Wednesday, October 22, 2014
End of life wishes. So, so important. But will never happen if this topic is never discussed.
So many times families don't want to even think of end of life wishes, let alone make sure they are in place.
You don't need to have dementia to have these wishes. Everyone should have what they want done spelled out explicitly and go through an attorney so there is no doubt what is to be done.
Do you want no life support? Do you want to a DNR? There are two kinds of DNR's. Which one does your loved one want?
Even having a will should be done. Especially when dementia is the issue. We all have heard or witnessed the horror stories of families being torn apart over something Mom had that was supposed to go to me, cause she said so...but she never told anyone else.
End of life wishes don't cost an arm and leg. Matter of fact, it can be free. But I always recommend going to an attorney. Everyone may be on the same page right now, but once your loved one passes you would be surprised how things change.
The stress and grief one goes through at the time of someone passing, doesn't need to be compounded with family feuds because your loved one had nothing taken care of.
I have heard too many stories of families who have not entered into end of life wishes because everyone knows what is to go to who, and so on.
Then, when the person dies, everything changes. Greed steps in. Things are said in anger, and frustration. Families are torn apart, all because no one took the time to see that the persons wishes were carried out specifically.
Little things can in a matter or hours turn into court battles. Take feeding tubes for example. If the person hasn't said what they want when it comes to feeding tubes or not, it only takes two people to disagree on what they think their loved one wanted.
Truth is, no one knows because they didn't take the time to ask. Do yourself a favor, and talk about these very important things. The time of doing this is now, not when they are on their death bed and communication for the patient has long been impossible.
My wife knows my wishes, our daughter does. But still my wife is my POA for finances and medical. She has the final say as to what happens. And she knows what I want.
This is one thing that she won't have to struggle with. It's done. And I did it. There will be no guessing. I suppose there still could be disagreement, but that would be just because someone didn't like what I decided.
And that as they say is tough. There are not many things one can decide for certain in this world. How you leave it can be decided. And your loved ones wishes are theirs, not yours, not any other family member.
I for example absolutely want feeding tubes. That is my decision, and mine alone. If someone doesn't like it or understand it, like I said tough. I have an intense fear of starving to death and not being able to communicate it.
Many have said there is no pain in the final stages and a person is denied food or water. I say, "Say's who?" Who do you know who has come back from a near death experience and said, "At least I wasn't hungry"?
No one knows if depriving someone of food and water in the end is painful, or not. "They" just don't. You will hear this from some, that depriving one from food via feeding tubes does not cause the patient any distress.
Really? Well, I am smart enough to know that this is an opinion. Could be right...but Im not going to take any chances. I want to be fed. I want to be hydrated.
Some don't. And that is fine. Why? Because that is their end of life wishes. Do yourself a huge favor and confront this elephant in the room. In the end, this will save you a whole lot of heartache...
Tuesday, October 21, 2014
Aggressive behavior, physical and mental abuse, hurting themselves or others. We hear of these stories all the time here on Mp.
What do you do? What can you do? Everyone who deals with these behaviors wants an answer on what to to.
The thing is rarely you can do anything that will "fix" these behaviors. And to make matters worse, these behaviors can and usually do just get worse.
Many times caregivers/family members think they can get their loved one to the doctor and somehow he is going to do something that will stop these outbursts.
Problem is, the only real way you can get a patient who is violent, abusive, and aggressive is to stop these actions is to medically subdue them.
In more instances than not the only way to help, is to medicate them so they cannot act out violently. No one wants their loved one to be drugged into a zombie state.
But something has to be done. You can't just hope this gets better. Some think they can place their loved one when they can no longer handle them because of these violent outbursts.
Only to learn that the facility will not put up with this type of behavior either. They cannot have a resident attacking other patients, or staff. If this does happen, the first time they will try to redirect the patient or do what they can to prevent them from being abusive.
The second time they will demand the patient is discharged. There is no cut and dry solution to patients being aggressive. This is something that is not uncommon and the patient cannot be blamed.
In almost every situation, they don't have any idea what they are doing. However that doesn't make this go away. When a patient first becomes violent in anyway, it has to be dealt with.
You have to do something, because like I said it will progress. In other words if it starts out verbal abuse, that many times turns into physical abuse.
First and foremost make sure there are no firearms or weapons in the house of any kind. Even the kitchen knives can be a weapon. Put them somewhere where they won't be found.
And never take these things as it was just a one time thing. Just be aware that you can never predict what a patient will do. Never. They are scared, confused, and have a brain disease.
I have days when I am very agitated, but have never been abusive verbally or physically. That could change at any time. Your dear loved one who wouldn't hurt a fly could become outraged over the littlest thing.
Just be aware. And reach out to the professionals. This can't be ignored. There have been many cases of murder suicides where a dementia patient was involved. And every family said the same thing.
"How could this ever happen to us?" It does and it can. So be aware. And keep your loved one safe, even from themselves.
What I am going to tell you now will seem a bit over the top. But you need to think about this. When you loved one does show aggressive behavior call your local law enforcement.
Not to have them arrested, but that is the one place to start to get help. They know resources and can get you in touch with them. Many people think they get the law involved and that will just get their loved one in trouble.
It's not law enforcements job to put everyone in jail. If they know the situation, there are many options they can offer. Justice is blind, so if you do not let the local police know what is going on, and they do respond to a domestic violence call, things can and do happen quick.
They need to know what they are dealing with, before they get there. That the person that they will be dealing with does have dementia and has to be treated as such.
Same way with contacting your local EMS. They too need to know about your loved one. Here locally in EMS we always had a list of people we dealt with on a regular basis.
Like diabetes, or a child who has severe medical issues. The same goes with if EMS is called to a house where the patient has dementia. Knowing this can help them before they even get there.
It will help working with your local authorities. Have an officer stop by and just advise them that your loved one does indeed have dementia and they will then pass that info along to others on the police force who may come into contact with your loved one for whatever reason.
This is something very easy to do. And can be beneficial when and if you ever do need to call 911. When an emergency arises, there is chaos everywhere. And when it involves a dementia patient, things are always worse right from the start...
Saturday, October 18, 2014
Leeanne and Louis Chames have been running our pilot support group for two years now and it has been a huge success.
We take the way we do things right here on Mp and replicating them to local community support groups.
I have said this many times, but what we are doing is redefining the definition of support.
We don't do handouts and read to people in these groups, like you will find in many support groups.
We don't have ridiculous rules like you are not old enough to be in a group, or that you can no longer attend because your loved one has passed. Or you can't attend because you are a patient.
And our facilitators are going to be just that. Facilitators. No one has to run these groups. All one must do is get them talking, and the job of the facilitator is done.
I have been to more support groups than I can remember, and everyone of them have some sort of restriction. Our only restriction is you be 18 years of age.
If you are a caregiver, you are welcome. If you are a patient, you are welcome. If your loved one has passed, you are welcome. And you are most certainly welcome to stay when and if your loved one does pass.
We don't have time restraints. Every support group meeting I been to is limited to an hour. One hour. I can tell you that sometimes by the time you get the people seated, they say their hello's to one another and you get them to start actually sharing, fifteen minutes can easily have been taking up just doing these things.
And once you get someone talking, who in their right mind is going to say, "I know this is important. but we have to continue this next month, our time is up".
There may not be a next month for some of these folks. Granted you can't have support groups meetings that go on and on. But you cannot limit this to an hour, you just can't.
We are getting things lined up through applying for grants to make these Memory People Community Support Groups available all across America.
Right now we have close to fifty Memory People members who have expressed interest in facilitating one of these groups.
You don't need to be a public speaker. You don't need to hold some sort of degree to do this. And you ask Leeanne Chames, sometimes you get back way more than what you offer through facilitating one of these groups.
They have a group that go to their meeting twice a month because they want to. It is something, how they all are there for one another. Just as it is here on Mp...
I tell you right now, we are going to change the way support groups are ran. I have been to several, and what they are doing is robotic. It isn't helping anyone.
They have a powerpoint presentation, they pass out hand outs, and they read to the people there. That isn't support, that isn't even close.
We attended one meeting here locally where I swear to God they were showing a video using VCR tapes. That's how old the presentation was. There were people actually smoking in the doctor's office scenes they were showing.
If this is the best any organization has to offer, they have as they say missed the boat. When we left that meeting that night I never went back. It was a total waste of my time and everyone there.
The problem we have as I see it, is that everyone thinks there is one organization whose support groups is the standard. It's not. It's not even close.
I have said many times what this organization did for us we never forget. They helped us out tremendously, but that doesn't make them the standard in support groups.
What they do best, and what they do most is get funding for research. I have done many speaking engagements for them in the past four years. And I was honored to be asked and will do them as long as I can.
I just have a difference of opinion on how support groups should be run then they do. I can tell you, the people in charge do not realize what is happening at some of these support groups. I am convinced of that.
If they do, they would surly never admit it. They are not and do not do support groups well. Now that being said, it doesn't mean every support group they have is bad. It just means the ones I know of and the ones I have heard of have a lot to be desired.
Not allowing someone to attend because they only in their forties for example. Not allowing someone to attend because their loved one has passed. Or not allowing patients and caregivers to attend these meetings together.
What we do here we do it right. And what we are doing in our Memory People Community Support Groups, we are doing that right also.
Thanks to many of our members here for their donations, which is also a huge help when it comes to the start up things we need. I and all the other ones involved in this thank you for your donations.
YOU are making a difference. It doesn't have to be a $100 donation to make a difference. If everyone here donated one dollar that would be over $9,000.
We no many of you can't. And that is fine. Just no if you do donate, your donation is being well spent. We are changing lives, one person at time...
Friday, October 17, 2014
If you have been here on Mp for any length of time you know about Sam. Sam is my dementia service dog. He's a three year old male german sheppard.
He came from Southern California where he was trained. He went through seven stages of training to get to the level that he could be a service dog.
Not all dementia patients would do well with a service dog. You have to think about getting one in the very early stages of this disease.
You have to be able to "handle" the dog. Give it subtle commands and things. Sam took to me like we were life long friends.
He has not left my side since we met, except for some additional training that was needed a couple of years ago that we were able to get here locally.
I am constantly asked, "What does your dog do for you?" And the answer is it's what you can't see that he does, that is such a help to me.
Before Sam, my anxiety level on a scale of 1 to 10 was a steady 12. Now I would say I am a 3, maybe less at times. I still have days or hours where things are not good.
Sam cannot "fix" anything. What he does is affords me to do the things that once were so difficult. My stress level is much less. I can now go out in public with more confidence.
I used to live in fear whenever I would go anywhere with Phyllis June or even just to the local store here by myself.
But Sam has changed all of that. He gives me confidence. I know that no matter where we go he can get me back to the vehicle I was in. I forget where I park constantly. That is no longer a problem.
I am not supposed to be cooking when I am alone. Using the stove and such. Sam is trained that if I do use the stove and I walk out of the kitchen for any reason he barks till I come back.
He lays directly in front of the stove when I am using it. But he is intelligent enough to know he doesn't have to do that if Phyllis June is at home.
We were blessed to have Sam come into our lives. Service dogs are very expensive, but I can tell you this, if I knew then before Sam what I know now I would have gotten one regardless of the cost.
He has changed my life that much. Much more than any medication I am on, or anything that we have tried to help with the stress.
Does every patient need a service dog? Of course not. You could very easily get by with a therapy dog. They still need to be professionally trained, but they would work just fine.
And any dog or cat would work as well. You basic house pet is not going to do what a service dog would do, but it will afford companionship.
The only problem Sam has is me. I let him get away with too many things. And he knows it. He's a dog, but a very intelligent dog and he does use that to his advantage.
When he doesn't have his working vest on, he is like a family pet. I should only let him play short periods of time. That is one of the things he gets away with.
But he never is out of sight of me. No matter what is going on, he may wander a bit, but never more than a twenty feet or so from my side. And like I said he never loses eye contact with me.
He sleep right beside my side of the bed. I get up, he gets up. I walk into another room in our house, he is right there with me. He lays right behind me when I am on the computer doing Mp things.
He is a god send, and our dear friend Kathy Sly made this all possible for us. I miss her dearly. She was a Mp warrior. She knew what we were doing here was changing lives. She was always there to help when ever asked and she was instrumental in us getting our non-profit status.
Thank you, Sly one for Sam. And thank you for your kindness and support you showed daily here on Mp....We love you and will be together again one day soon.
Wednesday, October 15, 2014
How would they realize this has happened? My guess is this scenario would go something like "Dad isn't listening to a thing we tell him. He totally ignores us, it's as if he doesn't hear, or doesn't want to hear anything we have to say".
What if Dad was experiencing hearing loss, and of course had no way of conveying this to anyone?
Or, in the case of the caregiver/family member, what if they started having hearing loss? Can you imagine. The one vital thing a caregiver needs to do is to watch their loved one.
To make sure they don't do anything that may harm them or others around them. And of course to head of wandering. What if they. the caregiver/family member could not hear when their loved one gets up in the middle of the night and decides to cook themselves something.
Leaves the stove on, or what if they somehow got out of the house. And the caregiver had no idea simply because they didn't hear a thing.
Can you imagine the difficulty it would be for either the patient or the caregiver if either experienced hearing loss?
It would be wise in my opinion to have a hearing test for the patient. This may not work, depending on the severity of the disease they are experiencing.
Caregivers always need to be aware of everything. Hearing loss would definitely fall into this category.
Dementia causes many things. The patients deal with so much with just the disease alone. Imagine if on top of everything else, they were unable to hear a thing.
We all should know you never approach a dementia patient from the rear or side. Many patients experience peripheral vision problems, where they cannot see when someone of something is coming toward them.
Take that and add hearing loss to it and you have a deadly combination. Tell their doctor the next visit you would like them to have a hearing test.
And while you at, if your Dad is the caregiver, or whoever you may want their hearing checked periodically as well. Not hearing what is going on, can be so dangerous.
And many times when it comes to hearing loss we also find denial. No one wants to admit they can't hear. But it's something to keep in mind. And something that is easily checked time to time.
Brings a whole new meaning to "Dad never listens to anything, it's as if he's deaf or something"....when in fact perhaps he is.
Monday, October 13, 2014
We just added our 9,000th member. I remember when we had only 9 members. Our goals then, are the same as now. We haven't changed one bit.
When you first get this horrible diagnosis, or even before your diagnosis, you have questions.
And there is nothing worse than having questions and getting all kind of different answers. Here, you can be sure your questions will be answered in real time. And you will get the answers you need. Not what you want to hear.
To try to sugar coat any part of this disease is wrong. You do that when you child is going to get a shot, or you have some news to tell someone and you try to soften the blow.
There is no softening the blow with dementia. Whenever you tell someone with dementia that it will be alright, you are in denial. I tell everyone who says that to me, "There is nothing about this disease that is alright, and there never will be."
We pride ourselves here on being direct, and truthful. If someone posts here about the latest concoction coming down the pike that slows the progression of dementia, we will call them on it.
There are many sites where you can talk about miracle cures. This just isn't one of them. Before I started Mp, I would surf the web trying to get information on dementia.
I soon found out what I already knew. Just because it's on the internet, it certainly doesn't mean it's accurate or even true.
One could use the "if it sounds too good to be true, it probably is" when surfing the web. We pride ourselves here on getting you the truth.
Many of my posts and others are very difficult to read for some. But what I post about dealing with this disease is exactly what people need to hear.
As we say, "The Good, the Bad, and the Ugly." We are doing something right, that is evident because of our members. Back in the beginning I heard "It's all about the number of members for Rick."
Well, Duh? The more people we reach, the more we Support and the more Awareness we can share. It is about the numbers. If not for our members, I would be sitting here at my computer every morning still looking for a place to get the truth about dementia.
Now, you simply click on Mp, a safe and secure site, and you know when you read something here it is the truth. We don't do agendas here. Others sties do and thats fine.
I thank each and everyone of you for making this site what it is. And we are just getting started. Thank you,...
Ever been to the ocean? Seen and heard the waves lapping upon the shore? Some are every so peaceful. Many people use the sound effects of waves to lure them to sleep.
Then you have those waves that cause damage. Destruction beyond repair. Damage that one has to actually see to believe the power the waves posses.
That is what dementia is like. Some times what you go through as a patient is a calming feeling. You sit there, alone in your favorite chair and you are indeed at peace.
It truly is a calming effect to me to be alone at times. Alone with what thoughts I have left. It is indeed like the flowing of a gentle wave.
Then there are the times when you feel exactly like a tidal wave has hit. Nothing goes right, you can't understand a thing that is going on or being said.
Having dementia is a constant struggle. One that flows, as the waves do. There are days when you can have a somewhat "normal" time. But then out of the blue, without any warning comes the waves.
Pounding in your head. The feeling is that of being in a strange place, where you don't know anyone and nothing is recognizable.
Not being able to understand what is going, who is with you. Even your wife and kids are not recognizable at times. You can't think of their names, you don't know what day it is, you concept of time is completely gone.
It's these times when you feel as if the waves have actually carried you out to sea, and you are drowning. Helplessly drowning in your own thoughts.
The symptoms of dementia are different for everyone. Some symptoms are much more pronounced than others. And some who have these symptoms never really are the same at one point.
I have read many times that I sure wish my husband could do the things Rick Phelps does. There are many things that Rick Phelps can't do that most are not aware of.
My cognitive ability is getting worse. No one should be surprised at that. My ability to recognize things is what I deal with more than anything. I still have the bouts of memory loss. That's a given.
But on top of that, on top of having the fear that goes along with this disease, the anxiety, the stress, and everything in-between I do have the feeling of that peaceful wave coming over me.
Not often. And it may be ever so fleeting. But it's there. I want to think every patient has this feeling. That not every waking second of everyday is dealing with this.
I try very hard to deal with the abilities I have left, not the abilities I have lost because of this disease. I could complain daily about not being able to read any thing longer than three paragraphs.
I could waller in self pity of what has happened. The time I have been robbed of. Not being able to go where we once did. The vacations that are now a thing of the past. I try to think of the times I am not afraid, not stressed about the littlest thing. I try to remember being at peace.
There are times of peace. There are times, even though patients appear to be a thousand miles away, they are there. Sitting in their favorite chair, appear to be staring out at nothing. Yet they are at peace.
I would like to think that every patient experiences times the waves are ever so softly breaking upon the shore. I want to think there is indeed peace in all of this terror.
I would like to think that...
Sunday, October 12, 2014
When you're having a day that you think you will never get through, we are here.
When it's 3:00am and you are up, because your loved one can't sleep, we are here.
When you have no idea what to do, who to ask, or what to ask, we are here.
When you can't call up a family member, because they are in total denial about what is happening, we are here.
When your loved one lashes out to you, verbally abuses you or worse, we are here.
When you don't know what sundowners is, let alone what your loved one goes through when dealing with it, we are here.
When someone tells you that eating out of aluminum pans will cause dementia, we are here.
When you lie in bed, wondering what tomorrow will bring, we are here.
When you have a great day with your loved one, we are here.
When you just can't take another step, we are here.
When placement is the last thing you want to discuss, we are here.
When your loved one has wandered off for the very first time, we are here.
When you ask "Why me, why my loved one?", we are here.
These are just a fraction of the what a caregiver and patient go through. We are here for every one of these situations. The Good, the Bad, and the Ugly.
There is never a time when we are not here. We are here for each other, and that is how it should be. That is all we really have. Each other...
The success we have is because of each of you, coming here and pouring your hearts out to complete strangers. Some you will likely never meet, yet they are so dear to you.
All this didn't just happen. We work very hard behind the scenes to make sure things run as smooth as possible here, for everyone.
The last thing you need to worry about is us not being here. That will never happen. It is the one constant in all of this. We will be here.
Long after I am gone, Mp will keep going. It's not about Rick Phelps, I have said a thousand times it never has been. It is about you. Each of you who are here, bringing Awareness and offering Support to one another.
I could not be more proud of what has taken place in four short years. I knew the need for this was there. All I did was supply the means.
The rest you all have done. And you have saved my life in ways you will never understand. Mp has kept me sane, dealing with an insane disease.
When I no longer am able to be here, each one of you and even the ones who have not found us yet will be in my heart.
Phyllis June and I thank you for what you do here, day in and day out.
We are here...
Thursday, October 9, 2014
The "Elevator Syndrome". I seen a post I had did some time ago about this. I have it, most likely your loved one may too.
It's when I am in a discussion with anyone, about anything, I look down. It's not that I can't or don't want to make eye contact with anyone. It's that every conversation I am involved in, I have to concentrate on what is being said, what has been said, and what if anything I should say.
One has to be a patient to really understand the "Elevator Syndrome". Ot reminds of when you were a kid and did something you knew you shouldn't have.
When your getting a lecture or whatever from a grown ups when you were a kid, the "elevator syndrome" kicks in. That's probably where it started.
Just know when your loved one looks down at their shoes, and doesn't make eye contact, thats because they are trying as best they can to think about what is going on.
What is being said, who is talking , and all the time trying their best to say something that doesn't come off as to idiotic. The longer one has this disease, the more and more one looks down.
Then one day, they don't even do that. Simply because they have lost the ability to do that as well...
Tuesday, October 7, 2014
Monday I had a doctors appointment with our family physician. It went pretty much as I expected. He came in, we chatted about everything but dementia.
And that was fine with me. He is a psychiatrist also. My guess is he was watching my body language and how I just carried on with the conversation.
The thing is, when you are in the mid-stage of this disease, the most you are going to get out of a doctors appointment is you have to go there to keep receiving your medication.
He is the one I get all my scripts from. So, as much of a waste of time I think this is, it is necessary. We were there about thirty minutes total.
Didn't once mention dementia, didn't talk about memory loss, or anything. You want to know why? Because he knows as well as I do there isn't one thing he can do.
Now, if I had complained about stress, my nerves, anxiety, things like that he would have addressed that and did what was appropriate.
I am smart enough to realize that there is nothing he is going to give me that will "fix' what I am experiencing. He can prescribe things that will perhaps help, lesson the symptoms, etc, but that is all.
Some I am afraid go to their doctor and expect miracles. There are none. And the sooner you come to understand this, the better the patient, and the caregiver will have dealing with dementia.
I suppose in the very beginning I too expected miracles. But I have to tell you, I educated myself about dementia, and I took what I found on the internet and deciphered what I knew to be false hope, and ignored it.
When someone carries on about a product that will do this, or do that, and you haven't seen about it on the new then its a pretty good assumption that it is false hope.
We don't judge people here. If you want to believe in everything that comes down the road as a cure all, thats your business. But, we don't allow posting of it here.
We deal in reality. We don't sugar coat anything here, we tell you what is true, not what you want to hear.
So, going to my doctor was just what I thought it would be. We talked about flying, we talked about labs, and we talked about a few other things.
We didn't discuss what he can't change. Going there is sometimes a breath of fresh air. You just got to have the right doctor.
Wednesday, October 1, 2014
"Sometimes yesterday, can seem a million years away." This is the beginning of "While I Still Can..." a song my dear friend Dan Mitchell penned for me.
He took some of my quotes and put them to music. The reason the first line of the song is about yesterday, is because when you have dementia you have no yesterdays.
I no longer have any concept of time. I can tell time, but there is no concept of it. Ten minutes can seem like an hour. If someone says "I will call you in a half hour" that half hour is long forgotten in just minutes.
Many patients suffer with the loss of time. When you are able to tell time you need a reference point. Take for example, if you know you have to be at an appointment on a certain day, at a certain time, the first thing that goes through you mind is a reference of that time.
If it's Monday at 3:00pm. you might reference that too it's your first day back at work, and you have to be there when the kids get of school, at 3:00pm.
This doesn't work when you have dementia. I can't keep track of the time of day it is, let alone the day of the week. I have no reference to go by.
Telling your loved one you will be taking them to the doctor tomorrow, Monday at 1:00pm means absolutely nothing. Chances are they don't know what today is, let alone tomorrow and if you tell them they will simply forget.
Again because they have lost the concept of time. Not many people talk about losing the ability to tell time or know what day it is, but it is a huge problem for the dementia patient.
Everything you do, everything you have planned from the time you wake up till the time you go to bed at night, dictates because of your reference to time.
Right now I know it's Wednesday, only because I just looked. I had to fill some paper work already this morning, and did it before Phyllis June was up.
That was a mistake. I put the date as September 31rst. There is no September 31rst. I looked at the calendar and everything, but still wrote in September 31.
She checked it luckily and said its Oct.1, not September 31. She didn't go into there is no September 31, knowing that it wouldn't resister any ways.
Out of habit, you will tell your loved one about a certain date, or time. And that's fine. It's what you have been doing forever. Just try to remember, they have no reference of time, and will likely not remember it in just minutes.
So, if it's important you have to be the one to make sure they are ready to go or do whatever it is at any given time.
The second verse of the song goes, "Time is my enemy, that's why I'm living for right now.. Tomorrow just to far to think about, my heart only knows one task."
Time indeed is my enemy. And it most likely is your loved ones as well...