Saturday, October 31, 2015
I have had an issue with recognizing things for a couple of years now. What I am looking for can be right in front of me, but for whatever reason I do not recognize the object and keep looking for it until I just give up.
But lost time also effects the caregiver. I would bet on any given day, most caregivers lose two hours a day just looking for their loved one.
This doesn't mean they have wandered out of the house, or they are just gone, but the time you lose going from room to room just looking or checking on your loved one.
There isn't anything one can do to "fix" this as we all know but it is one of those things that you rarely hear about. Lost time.
I can be sitting in my recliner for what I think is just minutes, thinking, or just staring out the window but this in reality could be an hour, or more.
I have long lost the perception of time. I can still look at a clock and see what time it says, but I have no perception of say an hour, or ten minutes.
This too is a form of lost time for me and other dementia patients. This disease takes many things. In the end it takes everything, but in-between the precious time we lose can never be gotten back.
Some will think I have a lot more things to worry about in my day as a caregiver than to think about the time my loved one may be losing. But this is a very important part that dementia takes from a patient and especially in the early to mid stage one is still cognitive enough to know they are indeed losing time.
What to do about it? Again, there is nothing one can do. Just like all the other symptoms we go through as dementia patients and what caregivers do in their "normal" day.
We do indeed lose time. And time as I have said over and over is my enemy. I don't know if I have six years, six months, six weeks, or six days to be able to communicate and do the things I do now.
Many times when a patient looks stressed, worried, agitated, or becomes physically abusive, one of the reasons could be as simple as they have lost time. They don't know or understand what is happening, and they react the best way they know how. Sometimes this indeed can be verbally or physically.
Lost time. Just one more thing we will never get back.
© Rick Phelps 2015
Wednesday, October 28, 2015
We talk about these three things often here on Mp.I came up with these three things because as a patient, I want to be safe, pain free, and content. We all do. Keeping your loved one safe can be just by keeping them in eye contact of you. Or it could be having alarm pads put on their bed to alert you if they get up in the middle of the night.
Keeping them safe gets harder as time goes by. As this disease progresses, so does the ability of the family member/ caregiver to keep them safe.
And what keeps them safe today, may not tomorrow. In other words say you have a device that alarms you when the front door is opened, then your loved one goes out the back door.
Safety could also mean watching what your loved one puts in their mouth. If they are experiencing swallowing issues, you really need to watch this. But any patient can put any thing into their mouths. Brushing their teeth with Neosporin instead of toothpaste, because the Neosporin was lying on the bathroom sink.They simply don't know any better.
Pain free. This topic too differs from each patient. I had a cousin who had many medical issues. Started off with diabetes and the loss of her right leg, then she became legally blind. The pain this individual experienced was excruciating, but not once did she complain. She had an extremely high tolerance to pain. And the good thing is she could communicate this to us.
Your loved one may not be able to communicate such things as pain. Can you imagine for example having a severe tooth ache and not being able to communicate this? Or what if your loved one has migraine headaches? What if you notice your loved one blinking more than usual, but just attribute this to the disease, when in fact they have something in their eye, or their eye ball has been scratched somehow. The things one must watch for when it comes to keeping your loved one pain free is endless.
Most family members/ caregivers know when their loved one is in pain. They can see it on their face, their actions, ect. We know that communication is a very hard thing for dementia patients, and someone in the mid to late stage of this disease just doesn't have the ability a lot of times to express they are in pain.
Is you loved one Content. Content is a state of mind. I am content when I am just sitting and doing nothing a lot of times. Many patients are, but there is this stigma that goes along with dementia patients that for whatever reason they must be doing something.
This something can range from mind games, to puzzles, to bingo, to crafts. Many times a facility is chosen because of the activities that they offer for your loved one.
As a dementia patient, I can tell you that activities is not an important thing. I don't need to be kept entertained or busy, just because someone, somewhere says a dementia patient should.
Many times when you see a dementia patient who used to be busy, doing things, now they are just sitting there, staring out the window or staring into space we feel that they must be something wrong.
People don't realize that with this disease it is a constant battle. There are no breaks, the confusion, memory loss, anxiety, fear, and loneliness are just a few of the symptoms that we deal with constantly.
When I am just sitting down, doing nothing, the tv may even be on but I am not watching it. It is indeed just noise. But I am content. Now you take that, and then try to have me do a mind game of some sort, a puzzle, or anything for that matter and you are adding to my stress, not helping with it.
Being content is different for every dementia patient. And we tend to think that if our loved ones are doing things they used to do, this will indeed make them feel content.
Taking Mom for a ride in the car, which she used to love to do, now can be a horrific event. Just getting her in the the car can be an issue.
Taking Dad to have coffee with his buddies like he use to do. This too can be way too much for him to process. All the people, the noise, the being out of his routine, etc.
All of these things, being safe, being pain free, and being content are different for every patient. But we need to be able to at least try to make sure our loved ones are indeed safe, pain free, and content.
Sometimes it is a hit and a miss, as with everything with dementia. There will come a time when there will be no way of knowing if they are pain free, or content. The disease will take over so much in the end, it will be impossible to tell.
Just try to see that your loved one is all three of these things. If you can answers yes to these three questions:
Are they safe? Are the pain free? And are they content? You are doing the best that anyone can expect of you as a caregiver. Sometimes all of this will seem impossible.
As bad as it is today, this could very well be the very best day that your loved one will every experience, ever. We cannot change what is coming, but if we understand and try to do the very best to keep patients safe, pain free, and content, everything else is just small stuff.
Pick your battles. If they haven't bathed in two days or more is this really the end of the world? Nothing that a warm wash rag and some baby powder won't remedy.
Do they really need to go to the doctor today? If they miss an appointment because you simply cannot get them dressed let alone into the car, is it going to be life threatening? Probably not.
When you force your loved one to do something as bathe or go somewhere you are defeating the purpose of keeping them safe and content. They do not feel safe, because you are having them do something they simply do not want to do.
And if they are do not feel safe, or scared or whatever, they certainly are not content.
Is this easy? Of course not. But this is why when someone tells me it will be alright, I tell them no it won't. There is nothing about this disease that will be alright, and there never will be...
© Rick Phelps 2015
Monday, October 26, 2015
What happens here is when someone in your family is diagnosed with dementia there is a constant fear that you also may get dementia.
I have said many times worrying about getting dementia is like carrying an umbrella around with you every day, because it might rain. It just doesn't make sense.
If someone in your family is diagnosed with dementia, your mother for example, this simply means your risk increases. It doesn't mean that you are doomed to get dementia.
For over five years now I've been posting about what it's like living with dementia. When someone thinks about dementia, first and foremost they relate this disease to memory loss.
Obviously there is memory loss with dementia but there are many more symptoms that go along with this disease.
It would be virtually impossible for me or any other patient to list all the symptoms that we deal with from this disease. Every patient is different. Every patient deals with the symptoms of dementia differently also.
What I can tell you is if dementia comes into your life you will know it. This disease is much more than memory loss.
The symptoms caused from dementia can include but are not limited to, anxiety, hallucinations, fear, loneliness, nightmares, and confusion just to name a few.
Along with the symptoms one must understand everyone deals with these symptoms differently. And each of these symptoms can occur several times a day or last for several days.
What I am trying to explain is in the beginning this disease starts out slowly. One may experience memory, and forgetfulness. As the disease progresses and even before a diagnosis, a person might've had an dementia for up to 10 years prior to that diagnosis.
When you are diagnosed with any form of dementia you didn't get to disease the day before you were diagnosed. Same way with cancer. When someone is diagnosed with cancer, they have had cancer for some length of time before the diagnosis.
This disease is not like misplacing your purse or your wallet. It's not like losing your car keys. It's like having your car keys in your hand, not knowing what they are for.
It's not unusual to be concerned if someone in your immediate family have been diagnosed with dementia, that you also may get the disease. Being concerned is one thing, worrying about this day in and day out is another.
A good rule of thumb is if you think there is a problem, there may be. It's a very simple and non-evasive procedure that can be performed in your local doctors office that will tell you if you should need to see a neurologist.
One of these test just called the mini mental test. This test is design to see what your short-term memory is like. It Is not a test designed to use to diagnose someone for dementia.
It's not a pass or fail test. If you do poorly your doctor should refer you to a neurologist for further testing. Before that your doctor should order several other tests including blood work, CAT scans, PET scan, and check for things like thyroid issues.
The bottom-line is worrying about getting dementia is a waste of time. If your concerned get checked, that is not waste of time.
There has never been anyone in my family diagnosed with dementia prior to me. Not on my mom side, nor on my dads side. However if someone is diagnosed in your family your chances do increase. It's just not automatic some would want you to believe.
Get checked if you are concerned. Don't worry yourself over something that for one you cannot change...and may not ever happen.
© Rick Phelps 2015
Thursday, October 22, 2015
Why do they one day seem really good, then in a matter of minutes this all changes? What can family members do for them when these symptoms happen to them?
In other words, what can I do to "fix" this?
Most already know the answer to these questions. All you can do is try to get through this as a caregiver/family member.
You can't and won't ever change how these symptoms occur. The mood changes, the anger, the depression, the fear they experience.
I can tell you this. All of these things and everything that happens is because your loved one has a brain disease.
This is the short answer. You can ask any doctor, any neurologists, what to do when things become crazy. They may have some suggestions.
I have no idea what they would be, but try anything. Chances are nothing will work. What the doctors are trying to is to change what is going on in the persons brain.
A brain that is indeed diseased. Common sense tells us you can't "fix" this. But all common sense goes out the window at 3:00am and your loved one got out of the house and is gone.
Common sense goes out the window when your Dad no refers to you, his daughter as his wife. Not only refers to you as his wife, but does indeed make advances as if you are.
Common sense goes out the window the first time your loved one no longer knows who you are. These things will happen, and there simply isn't anything you can do to stop it.
I keep telling people that as bad as it is today, it will get worse. I don''t tell people this to scare them. This is not a "scared straight" situation. This is just reality.
You can find sites on the internet where "experts" will provide all sorts of things, techniques, etc. to combat the symptoms of dementia.
In reality, these are all just things you want to hear. Once again, to change what is going on with your love one, you would have to somehow understand what is happening in the brain and what course of action to take to "fix" that.
This of course is impossible. Yet as I said, these "experts" go on and on about how things can be done to slow the progression or even reverse the disease.
I truly wish there was an answer. I am a dementia patient, and would love to not be living this disease day in and day out. But I am, and there is nothing nor no one who is going to change this.
That is a fact. Once you can wrap your head around this, things will not magically get better, but you will be able to handle what is happening much better. You can to things to help with the symptoms of dementia. The way you talk or interact with your loved one. Don't ask two part questions or questions that require your loved one to over think what you are saying.
If they are sitting there just staring into space, this is not a bad thing that needs to be "fixed". Take it from a patient, I am more relaxed and calm when there is nothing going on.
If I am sitting there, doing nothing there is nothing anyone needs to do. I am fine.
Keep it simple. Try to ask questions that can be answered with a simple yes or no. It's hard to keep this in mind, but you have to realize that every second of everyday this disease is effecting them.
In other words you may get a moment where things seem back to normal. They're not. These moments are fleeting at best and will not last. Hang on to these moments because they will become fewer and fewer as time goes by.
Are they Safe?
Are they Pain Free?
Are they Content?
These are the three most important questions you ask yourself when dealing with a dementia patient. You will never be able to answer yes to all three day in and day out.
But, if you do the best you can, that is all anyone can ask you to do. Wandering is a good example. You simply cannot be with and see your loved one every second of every day.
Chances are if your loved one hasn't wandered off, they will at some point. The only sure way to know they won't wander off, is if they are physically unable to do so.
Things happen. Just have a plan, then have another. Take a picture of your loved one every morning when they get dressed. If they do wander off you will have a picture of what they look like, what they are wearing, etc.
Everyone has cell phone. Takes about two seconds to snap a picture. This of course will not stop your loved one from wandering. It will help the police when they ask you for a description of who they are looking for.
Trust me, in times like this, you will not remember what they had on or even how long they been gone. The longer they are missing, the worse things will get and stress sets in and everything goes from bad to worse.
So, is there any "fixing" this? Nope. There are things you can do as a family member/caregiver to help ensure they are indeed safe, pain free, and content.
Will this work every single time? Nope. Nothing will. No matter what the "experts" tell you. I tell you this as a patient who lives this disease every second of every day...
© Rick Phelps 2015
"Dad?" This is the one thing you never want to hear yourself say. Going through the house in the middle of the night, or anytime for that matter and finding out that Dad is no where to be found.
Wandering: Not keeping a rational or sensible course. That is what the definition of wandering is.
To a family who has a loved one with dementia, the definition is different.
Wandering: The terror that sets in when you realize your loved one has indeed wandered off.
And terror it is. I describe this as having your children at an amusement park and looking around one second and one of them is gone, or seems to be.
That feeling you get in the pit of your stomach right away is undeniable. We've all felt this at one time or another. Take that and multiply it times about ten and you will know what it is like to have an adult wander off and have no idea where they went or when then went perhaps.
The first thing you want to do is call 911. Many times families waste precious time by looking for their loved one themselves. This is fine, but call 911 first.
If they are hopefully located by the time the authorities arrive, that's a good thing. If not, they have more recourses at their disposal then you do.
I also tell people it's a good idea to snap a picture with your phone of you loved one everyday, the first thing, even when they are going to bed is a good idea.
This gives the authorities an accurate account of what they look like, what they were wearing, etc. Without you again wasting precious time trying to explain or remember what they had on.
Too many times I hear that a loved one with dementia has never wandered, that would be the last thing that could happen. Well, it could be the last thing that could happen.
The first time could be the last time. There is a misconception about wandering. You will hear those who say that their loved one has wandered off and have no idea where they are headed. Which is true. Many times these people don't have any idea where they are going themselves.
But the one thing they are doing is trying to get somewhere where they feel safe. They wander, because for whatever reason they do not feel safe in the environment they are in.
Doesn't have anything to do with the way you are treating them, or anything like that. They have a disease of the brain and for whatever reason their brain is telling them that where they are is not safe for them.
Trying to figure this out is a waste of time. You never will. The only thing you need to realize is that wandering is real and it can happen to the person who seems so content and cared for.
There is some sort or panic that happens to them. Getting away from where they are is the only thing that is on their mind. Once they are out, they just wander aimlessly.
They could be on foot, they could be driving. When I was in law enforcement I found a 82 year old man, who had drove his truck through a gate at a prestigious golf course and was driving around in circles when I arrived.
He had been missing from a community about three hundred miles away, and he had been missing for over six hours. There wasn't a BOLO (be on the look out) for this gentleman because the family had assumed he was in their area, not some three hundred miles away.
Wandering does happen. And it happens to those who you would least expect sometimes. And it can happen over and over, or it may only happen once. Remember there is no rhyme nor reason to why dementia patients do the things they do.
The only thing you do is to try to prevent this from happening. Bed pad alarms are very useful. They are pads that just lay on the bed, when the patient goes to bed, they can be turned on and if they leave the bed an alarm sounds.
I can't tell you the number of times I have heard people say the only way they could keep their loved one in was to install a dead bolt of some sort of the front and back doors.
Never, ever do this. There are devices you can get to deter a dementia patient from opening a door, but a dead bolt is not the way to go. There are many things that can happen when you install a dead bolt on your front door.
What if you lost the key? What if there is a fire and you panic trying to get you and your loved one out of the house? Just don't use a lock of any sort to keep your loved one in the house.
There are many devices on the market that can help alert you when a door is opened, or your loved one is up out of bed during the night.
Again, wandering does and can happen. Have a plan. Like was always say here on Mp, have a plan then have another because the chances are the first plan may go up in smoke.
You simply cannot be too vigil when it comes to keeping an eye on a dementia patient. There have been literally thousands of patients who have walked off from facilities who have state of the art alarms, yet it happens.
Remember, first thing you do is call 911. And when the patient is found it is imperative that you get to them as quickly as possible. They will be in sheer panic mode.
Sometimes they authorities want to bring the patient to you, when you need to be there with them asap. You want to have your phone handy so the authorities can call you when your loved one is located.
The authorities will try their best to calm your loved one down when found. This will likely not work. Even when you show up, they could be in such a state of shock they may not recognize you.
I tell everyone who's loved one has wandered that they need to be seen by a doctor in the ER, soon after they are located. And when being transported it is essential that you are with them in the squad and never leave their side.
I could go on and on with this topic. But I hope what I have said here will enlighten some of you as to what to expect and what to do not if their loved ones wanders, but when...
© 2015 Rick Phelps
Monday, October 19, 2015
So, you have just received the terrible news. You or your loved one has been diagnosed with dementia.
What kind? It really doesn't matter. What matters is how you deal with this, and what you do in the next few weeks.
This disease will change everything. Make no mistake about that. You can read millions of articles on it, from the most prominent news papers and magazines, to the internet.
What you will be inclined to believe is that everyone cares and there is all kinds of support for you. This is a fallacy. A false hood. A pipe dream.
When you first get diagnosed the chances are you know little to nothing about dementia. We worked in EMS for over twenty years and didn't give dementia a second thought.
The only dealings we had with dementia patients were for minutes. From the time we seen the patient, till the time they were either taken home, to a facility, etc. There wasn't anything we could do for them, just monitor their vital signs and make sure they were comfortable.
The truth is, and this is a hard one to get a handle on, but the truth is the only people that care about dementia is the people who are diagnosed and those around them.
Sure, you will hear all the hoopla over the next thing coming down the road for a cure, or something that claims to slow the progression. Trouble is we are not one bit closer to either, something to slow the progression or a cure then we were twenty years ago.
There are studies. There is research. There are clinical trials. But what there isn't is progress.
I am not trying to be a Debbie downer here, but it is important that the people who are just getting a diagnosis know what they are in for, and they will certainly not hear this from their doctor and that is one of the major problems with this disease. It isn't told to you what to expect or what will happen.
I was one of the lucky ones. I knew something was terribly wrong five years before my diagnosis. We thought it was a tumor, or whatever on my brain. The thought of dementia never came into play, because once again unless you are dealing with it, it simply doesn't.
When I was diagnosed, as I say in my book, "While I Still Can..." it was as if someone had lifted a weight off of my shoulders. At least now, after five years of complaining about memory issues, everyone would listen. I was wrong. No one listened.
The diagnosis didn't change anything. The fact that I was approved for disability that next year didn't mean anything either. Sure, we had a fraction of what I did make coming in by way of disability. And we were thankful for that.
But again, we were not prepared for what lied ahead simply because of the doctors lack of explaining what we needed to do.
The Alzheimer Association as I state in my book as well helped us out more than anything in the beginning. But that too has all changed now. Cut backs wth them, no more in home visits, etc.
Knowledge. That is the most powerful thing you have when fighting this disease especially in the beginning. And that is the one thing that is lacking. Knowledge. The misleading things about this disease spreads as much if not more than the disease itself.
If you don't educate yourself about this disease, you will be left behind. Not in a sense that you will not get any care, but in a sense of you simply won't know or understand what is coming.
And when I say things will change, that means everything as you knew it is no longer. The change you see in your loved one now, the short term memory deficit, the anxiety, the stress, the fear, the hallucinations, all of this and much, much more will get worse.
What you are told and what you are led to believe is that dementia is a memory loss disease. The truth is the memory loss is just one of the effects of dementia.
But you will not hear that. You will not hear how this disease effects everything the patient does from the time their feet hit the floor in the mornings, till the time they close their eyes at night.
You will learn this over time, because the disease will progress. The problem is what you learn, what works today, may not work tomorrow or ever again. And you because of the lack of knowledge will have this deer in the headlight look, what to do next?
In my years of EMS, dementia was the least known of the medical emergencies I went on. Why? Because the patient looks fine and all they have is some memory issues.
That is what you think. Memory issues. I tell you now as a patient I do have memory issue. My short term memory is all but gone. And my long term memory has been effected greatly.
But there is so much more to this disease than just memory loss. The brain is the most complex organ in the human body. And it does everything for you.
If not for your brain, you would not be reading this right now. If not for your brain, you would not know when to breathe, when to swallow, when to blink. If not for your brain, you would not have any idea what to do when your eyes open each morning.
And everyone of these things are effected with dementia. What happens in the very beginning can be subtle. The disease can progress slowly, or in some cases there have been patients known to die with a year, months even.
The reason is when you are diagnosed, no one knows or can tell just when this disease started or in what part of the brain it has spread to. It generally starts in the hippocampus, where all your short term memory is stored and where decisions are made.
But, there is no 100% way of diagnosing dementia unless you have an autopsy of the brain done.
What we do here on Mp is better than anything you will find anywhere else. We don't cure anything, we don't and can't "fix" anything. But we do what so many others do not.
We talk to one another. We support one another. Clinical trials are fine. Drug intervention is fine. There are so many medications that help with the symptoms, the depression, the anxiety, the fear, the loneliness, etc.
But there is not one thing on the market today that will slow the progression or cure this disease. The thing now for example is they have found some sort of fungus growing on the brain of some dementia patients. Whatever.
Last year it was mice were doing better when injected with some chemical. The mice somehow were known to have dementia. How they know that is still a mystery to me. Again, useless information.
The best thing you have going for you is knowledge. You must be able to adapt with what comes along with this disease. You have to learn to pick your battles and if you are a patient you have to accept what is happening.
Those who do not accept this, and are living in denial will never get back the time they have lost. This disease will progress whether you accept it or not.
And by accepting that doesn't mean you have given up, it simply means you understand what is happening and what is coming.
There is life after a diagnosis. I have co-wrote a song, wrote a book, have done countless speaking engagements on dementia, and created Mp, all after my diagnosis.
One can choose to crawl up on the couch and feel sorry for themselves, watch this disease take from them little by little. Or they can focus on what they still have. What they still can do.
People say I am courageous for what I am doing. Posting or talking about my journey. It's not that. It's not even close. I am merely doing what many others do, talking about my journey, and I am telling about the journey of those who no longer can communicate.
I tell everyone who asks me, "How are you?", I tell them I am thankful. Because I am. I could be worse. I will be worse. I am indeed thankful that I have my wife, our family and most important my God to talk to.
I am a thankful man, doing the best I can do, "While I Still Can..."
© Rick Phelps 2015
Friday, October 16, 2015
But it is indeed the truth. And that is what we peddle here on Mp, the truth.
If your loved one wanders off, it's usually not anyone's fault unless they, the caregiver, are doing something that is indeed thoughtless.
Patients wander for one reason, and one reason only. They do not feel safe for whatever reason where they are.
And that feeling of safety leads to panic. It can start out as just a casual thing as a walk from the kitchen to the front room and for whatever reason they could end up blocks or even miles away.
Can you stop this, not always. There are things you can do to help assure that wandering is kept at a minimal. A GPS device of some sort on them. An alarm pad on their bed. An alarm of some sort on every door in the house. I tell people all the time to take a minute every morning a take a picture of their love one with what they have on.
This way, if they do wander, at least you have a recent photo to show the police when they ask for one. You know what your loved one looks like, they do not. Everyone has cell phone, and it takes but a second to do this. But can indeed save a life.
Wandering is just one of the issues caregivers face. Choking has always been a fear of mine. I am not likely to choke to death any time soon, but in my years of EMS I have seen the outcome of people choking and it is never good.
Patients do lose the ability to know how to swallow. Not all, but some. They lose the ability to do everything at one point. And that of course is on account of the disease.
Take for instance a Mother who has dementia. She is in her 80's and has cooked her entire life. Making a meal for twenty people is not a problem, in fact this is what she has done her entire life.
Now, for whatever reason she takes it upon herself to cook. The implications can be disastrous. Fire is the number one thing that comes to mind, especially if she is cooking at three in the morning and everyone else is sound asleep.
Bathroom mishaps are not the patients fault or the caregiver. These do occur sometimes nightly, and the number one reason is of course the disease.
What I am trying to say is things happen. And everything that does happen is not left to chance. It is the disease that makes the patient do what they do.
No one intentionally leave a pan on the stove and just walks away. But I have done this more times than I would care to imagine.
No one would intentionally become violent to their grandkids, or whoever, but this indeed happens. And it is the disease, that makes a patient become verbally or even physically abusive.
I wish there was a an answer. Even a complex one would do. The best I can come up with and have been able to is that it is indeed the disease that makes dementia patients do the things they do.
It's always the disease...
© Rick Phelps 2015
Wednesday, October 14, 2015
"I don't know what to say". How about, just talking to them? You don't have to say anything, you don't have to ask them anything. A lot of times all it requires you to do is listen.
You have to learn to go into their world. The confusion they talk of is real as rain. The hallucinations they see, also are real.
Trying to talk a dementia patient out of anything is almost a lost cause. I tell people all the time, pick your battles.
You will most likely loose most of them if not all. But try to remember to go into their world. If they tell you something that is so far fetched, just agree.
If they ask you for the tenth time today about their spouse, who's been dead for years, tell them they are fine. What good would it do to try to explain each and every time a person is brought up by the patient, only to remind them, "Uh, Mom... Dad has been dead for ten years now"?
They can't and won't understand this. We sometimes get lost in what a dementia patient can process. Which in time gets worse. You get two additional people in a room with me talking about anything and I cannot process what is being said.
This becomes very difficult for a patient. And it is always difficult for the caregiver/family member to remember.
One of the most common things I hear is "You remember". Why is that? Because we use that phrase since we were children. We have heard it all our lives and have used it millions of times.
It just comes natural to say, "You remember". Well, when it comes to a dementia patient, no we don't. Ever.
So many times sentences are started out with "Remember when..." Again, we don't. We can't. And there is nothing that is going to change that.
I find it much easier and have for a long time to just say, yes. For example, "You remember, John who you worked with for years, well his Mom died."
My reaction is, "Oh, no..." Having no clue who is John is, let alone his Mother. In that sentence alone I have to remember several things.
Where I worked at. Who I worked with. How long I worked there. Who John is. And try to recall anything about his Mother.
It just isn't going to happen. And it's not the fault of anyone who asks things like this, like I said it is normal. It is very hard for a family member to remember what to say, what not to say, etc.
So, instead of worrying about what to say to a dementia patient, sometimes if you just listen, that is all that is needed. Sometimes just sitting there with them quietly brings them comfort.
I bet I say to Phyllis June a dozen times a day at least, "never mind". I say this because as soon as whatever it is comes out of my mouth, before she can even ask what I said, it is gone.
This doesn't happen 24/7, or every minute of every day, but it happens. Realizing that your loved one has lost their short term memory and remembering this is two different things.
As a patient I will always have problems with my short term memory. Matter of fact it varies from day to day, sometimes hour to hour. Why is this? Who knows. I do know that my short term memory is all but gone and my long term memory has been effected for some time now.
All I can tell you is try to remember to be in my world. I can no longer understand what is going on in yours. And if I could, which I don't, but if I could I would never remember it anyways...
© Rick Phelps 2015
Tuesday, October 13, 2015
Foggy days. That is how you will hear many dementia patients describe what they go through at times. As a patient, I know exactly what this means.
Some caregivers/family members get this confused as to they cannot see clearly, things look hazy, as in a fog. This for me a patient is not the case.
I point out one of the scenes in the movie "Still Alice", where she is on a run, and ends up in part of the city she is not familiar with, lost if you will.
They camera pans around to show what she is looking at and when doing that the camera makes it appear as if Alice is seeing things blurry, or in a fog.
This is a misrepresentation to having "foggy days". What "foggy days" or times refers to is you simply cannot think clearly. Everything is confused, foggy, if you will. This is but one of the scenes that are misrepresented in the movie.
Some patients do have issues with eye sight, but the term "foggy days" to me is all about dealing with things and people around me, trying to decipher what is going on, trying to know what is being said when there is two or more people talking at once, confusion, etc...not having a hard time seeing things as some think.
Every patient is indeed different and some may experience some issues with their eye sight. But when you hear the term "foggy days", know that they, the patient are most likely referencing that they cannot function well, they are very confused, not comfortable with where they are, or what is going on around them.
The movie Still Alice missed a golden opportunity when it showed "foggy days" as being blurred eyesight. It isn't. And it surprised me as the credits rolled it showed at least six consultants from the Alzheimer Association that worked as experts on the film to convey an Alzheimer patient.
Could it be they should have consulted an actual patient? Of course they should have, but this is how the disease is thought of too many times. Through the eyes of someone who doesn't have dementia of any kind.
People listen to what these "experts" have to say about how a dementia patient reacts to things, when they in fact have no first hand idea of what they speak.
I only have to mention the virtual dementia tour to make my point. This is the exercise where they place headphones, gloves, goggles, marbles in ones shoes, and then gives the person three things to do while blasting music through the headphones.
If anything, this exercise may give you an insight on being elderly, and I'm not even sure that is precise. I am pushing my early sixties and I don't feel as if I have marbles in my shoes, or gloves on my hands, or something blaring in my ears.
Here's the deal, you want to know what it is like to have dementia? Ask a patient. This is the only disease I am aware of where so many people know what I am going through, who don't have and never have had dementia.
You don't see anyone going around telling people what is like to have leukemia, or diabetes, or heart disease. But you can find thousands of ways people describe what it is like to have Alzheimers, or any other type of dementia.
This, if you cannot tell, really gets under my skin. I have dementia. Early On-Set Alzheimers to be exact. One of the fastest progressing types of dementia so the studies say.
I have officially had this disease since 2010. I have had memory issues for at least five years prior to my official diagnosis. So, that gives me about ten years plus living with dementia 24/7 and I can tell anyone who wants to know what it is like living with this disease. I know what I am talking about.
Problem is, hardly anyone asks. I think this stems from people not wanting to pry or get to personal with a dementia patient. And you will find some patients do not want to discuss what they are going through and that is fine. These people come from a very proud and private generation.
But I see this virtual dementia tour being used every time I turn around. Here is the number one way you can tell that the virtual dementia tour is not what it is like to have dementia: Ask any patient.
Ask them if when they walk, they feel as if they have marbles in their shoes. Ask them if they sometimes feel as if they have gloves on their hands. Ask them if it seems as though there is music or some kind of noise blasting in their ears.
These things may happen to some people. But, and there is always a but, but this is NOT what it is like to live with dementia.
Still Alice, although a very good book and was written by whom I consider to be friend, Lisa Genova, it is indeed a work of fiction. “Fiction” refers to literature created from the imagination.
In other words it isn't factual. Which is fine. There have been millions of fiction books written and been classics. I just want you to think about that.
A book that goes on to be a movie, and it was written as fiction, the movie of course was fiction, and there were so many scenes in the movie that just don't happen in the life of a dementia patient.
It does sell books. It does sell movie tickets. We once we had a camera crew here at our house for a total of three days. A director from Los Angeles had sent them to our house to document early on-set alzheimer's, in the the early stages.
It was to be a documentary for I a national cable tv show. The camera crew indeed followed me around, and were very professional, at first.
Then it happened. The one cameraman wanted me to stand in front of the mirror in our bathroom and stare into the mirror as if I was in a trance. What he said was he wanted to Alzheimer's to "come out".
He wanted the Alzheimer's to come out. What? This is what I mean. Drama sells. First off, dementia patients do not stare into mirrors. Many times the mirrors in homes of dementia patients are covered because the patient cannot recognize the person in the mirror to be them.
I calmly told the cameraman to get out of our tub, where he chose to be to get the perfect shot of me staring in the mirror and I told him we have to talk.
I then explained to the cameraman and the producer that was him that the "Alzheimer's" just doesn't come out. After about a twenty minute lesson on dementia, they called it a day and the next day things went a lot smoother.
The lesson here is they didn't want to capture what I go through daily, they wanted to create some sort of fiction to put on film and show what dementia is like. Drama sells. Sometimes the truth doesn't as much.
I would have no part of it. And I told the executive producer in L.A. that as well. They did get dozens of hours of shooting done while here at our house and all around town in those three days, but tragically when they sent the finished tapes to L.A. the studio where they were making the final cuts had a fire and the studio was a total loss and they lost everything.
So, it was in the end all for naught. But, I made my point. You cannot make Alzheimer's come out. Yet, trust me when I tell you there are those who do this day in and day out to sell their book, or peddle their take on this disease.
And you would be shocked to know who believe all these people have to say. Again...if you want to know about dementia and how it effects a patient, ask a patient. Not some expert in the field of dementia. What they know they read in some book, or summed up on their own.
I live this disease seven days a week, twenty four hours a day. I know dementia. I live with it. And I will tell my story, our story, to anyone who will listen, "While I Still Can..."
© Rick Phelps 2015
Thursday, October 8, 2015
People will say it is the way things is for your parents to go before a child, which I agree with wholeheartedly, having lost a child.
But, losing a parent is never easy. You can prepare all you want, but it's never easy. Death is something many of us never discuss. It's taboo.
When you lose a parent, I think it has to do with the feeling of being alone. Who are you going to ask advice for now? Who are you going to share you thoughts with, the joy, the sadness, all of it?
Of course you are not alone, but when you lose a parent, a special part of you is gone as well. And when the surviving parent dies, it is even harder to cope with.
I was very prepared when both my parents passed away. Both died from cancer, and both were very, very ill. It only took six months for both of them from the time of diagnosis till their death.
Some say that is good, they didn't suffer long. But anyone who has seen what cancer does to a human being would never say such a thing.
It was a relief to see both of them pass. They indeed suffered, and suffered horribly. This was in the eighties for my Dad and early nineties for my Mom.
Pain management was not a high priority back then. And they both had excruciating pain. So, when they passed it was indeed a blessing.
That brings me to my point. With dementia, you cannot see the pain that patients endure, and have endured from long before they were even diagnosed.
I had issues about five years before my official diagnosis and have had to deal with, suffer with everyday, every minute, every second since.
I tell people all the time, there is never a break from this disease. As a patient I can tell you when you look at your loved one and they seem fine, they are not.
You cannot see the anguish that goes one with dementia. You cannot see the torment we go through. With cancer, you often lose large amounts of weight, your face sinks in terribly, and you most likely are in a great deal of pain.
There is no pain with dementia. And that is very important that you understand this. There is no pain, with dementia.
To say there is pain associated with dementia, one would have to be saying that their brain hurts. It can't and doesn't. You will never hear anyone complain of brain pain.
If you suffer a sever heart attack, there will be pain. If you have cancer, there will be pain, or if you suffer from arthritis or any other of the many crippling diseases, you will have pain.
Not with dementia. The pain that is associated with dementia is from the symptoms of the disease, not the disease itself.
But, and there is always a but. But don't think for a second that dementia patients don't suffer with pain. It is of course a pain of a different kind.
One that you rarely hear about, because not many talk about it, or even think about it.
Our pain is within. In our minds, our hearts, and our souls. Think about this, I have not gone one single hour in the ten years without having to deal with dementia.
Not one single hour. Sometimes and very often I have to deal with the symptoms of dementia every minute. It's the symptoms that cause us pain, not dementia. So when you lose a loved one from this horrible disease, know this...they are at peace.
A peace they have never felt since this disease has come into their lives. They will be missed. Of course. They will be grieved, no doubt. But remember this and it may perhaps give you some solace.
In my tenor in EMS and Law Enforcement I have seen death up close and personal. I have seen things that are etched into my mind that have been there for years.
But nothing I have done has ever or could ever prepare me for what I have been through with dementia.
And in my case, I think I am just in the mid stages of this disease. I have my good hours, not good days. I have, like your loved ones fleeting moments.
Just doing something as simple as going to Walmart now sends my into a tail spin. I worry about things way before they even happen. I get upset over the "what if's".
Looking at a menu in a restaurant, something all of us have done since childhood, now becomes a stressful event. I have long ago lost the concept of time, which we all depend on every single moment and don't give it a second thought, until you no longer have the concept of time.
I miss not being able to read and understand what I have read. That too left me many years ago now. What do you do? You adapt, or you succumb to this disease.
Yes, you will grieve when your loved one passes. But know this, they will be at peace. A peace that they have longed for sine the very day this disease came into their lives.
And one that you too, as a caregiver have also longed for them to have. They will of course be missed. That is no doubt. But in the end, the horror of this disease will be over for them.
As a patient I have lost many a battle with dementia, But I know in the end I will win the war.
I have long ago made peace with the fact that when my time comes, I have already lost any memory of my loved ones, who I am, and where I am at.
I am looking forward to the day I will be at peace. But I will fight this disease every step of the way, "While I Still Can..."
© Rick Phelps 2015
Monday, October 5, 2015
There was a post yesterday about some celebrities and their take on dementia. I wanted to comment on the thread that was here on Mp, but then I realized I cannot do it justice.
So I decided once again to explain how this whole thing works. This thing where the so called celebrities know everything and are helping so many people.
I really think one has to be a patient to really understand what I am about to say about this topic. Many will think I am bashing these celebrities or the Alzheimer Association, and I am not.
What I am doing is giving you an observation of what is going on here from a patients perspective. One that has been there, done that if you will.
Flash in the pan. That's what I call it when you see articles like Seth Rogan or Glenn Campbell. I watched in horror as Rogan appealed to Congress, all three members that were there.
He could have done a lot better if he had taken the situation seriously, instead always the comedian he felt that was the time and the place for a couple of laughs. It was not.
The thing about talking to our representatives is that they don't care. I say that with the utmost confidence because once again I have been there, done that.
I used to tell people save a tree instead of writing your representative. In other words, you are wasting your time. Then I get, "Well, if we don't try, nothing will ever get done."
Here's the facts:
No elected official is ever going to take a stand on anything, especially Alzheimers, that will eventually put them in a position as to where a Bill is up for vote that would be attached to their name that would raise taxes.
It's just not going to happen. They are there to garner votes. From the very first day they take office, their main concern is not about you, their constituents, it's about re-election. Period. There are no exceptions to this rule.
Anyone who doesn't realize this is or has been living under a rock. Now let me go on a tantrum about the Alzheimer Association.
The Alzheimer Association (AA) does one thing. They raise money. Money they say and always will say is used for research for a cure.
They have been doing this for years. I have not paid any attention to this but for the last five years, when I was diagnosed. That being said, no one else has either.
I say they raise money, and they do. Once or twice a year they have the "walk to end alzheimer's" which is their biggest fundraiser I know about.
They raise tens of millions of dollars, and I applaud them for their efforts.
What I don't applaud is the fact that even after asking for the last five years, I don't know where or how any of this money has been spent.
In other words, show me the money. Don't tell me. What research has been done the last five years and how much money was devoted to said research?
If you have or can get an answer to this, let me know. You won't. You can spout off speculations about what research, but to show me data, actual data and what was found, or learned from said research??? It isn't going to happen.
I can tell you this. The CEO of the AA makes $990,000 a year. The salary of the CEO of the Alzheimer Association makes just under a million dollars a year. Think about that.
When I ask about this, I am told they need to pay this much to entice the best in the field. Really?
Let me tell you what is going on here. Something you won't dare hear from the AA or any of its different chapters.
The AA is a money making machine. That's what they are. When you have a non-profit organization, one to which the CEO is making upwards of a million dollars a year, that alone takes away all credibility to me.
Now, that being said, this is not a "bash" the Alzheimer Association. You will find if you go back in the last five years I have had nothing but praise for the AA and for what they did for us as a family.
That was then, this is now. Since they were working with me, they no longer do in house evaluations. If your loved one has signs or symptoms of dementia of any kind, you go to them. They will not come to you.
Now in my case, because of inactivity here, we have no local chapter anymore. The closet chapter is about an hour and half away. It's absurd to think with the denial that accompanies this disease that you are going to get many to make an hour and half road trip, which will include the immediate family and the patient, just to be evaluated.
They, the AA blame this on cutbacks. Cutbacks is a codeword for we are not making enough money. So, if they are not making enough money, again, show me the money.
I can tell you this is a a multi-million dollar organization and most not all but most of the monies that are raised for research yearly are indeed used to run this multi-million dollar organization which calls itself non-profit, i.e.: Payroll.
Michael Neuvirth is so right. They do need someone like me to be the face or poster boy for them. It certainly doesn't have to be me, but at least get someone who lives with this disease daily.
Someone who will talk about it candidly and truthfully. Someone who knows how this disease will financially break you. How it will take the best of caregiver and turn them into someone who can't even remember what day it is. How this disease will control every second of every day.
I worked the AA for about a year and half in the beginning. Did some speaking engagements, went to many support group meetings where until I showed up, they had never had a patient involved in their meetings.
I would dare say to this day, it is rare to see an actual patient at a support group meeting ran be the Alzheimer Association. The reason?
Because what an actual patient may say, could perhaps be too difficult for the caregivers in attendance to hear. That is what I have been told.
How absurd is that? Let me tell you one more story about the AA that happened to me, and again this is not bashing them, I just want you to know what really happens there.
When we were invited to go to Washington DC to speak to the representatives there by the Alzheimer Association. We were all put into groups of about six people if I remember right.
Everyone in the group was given a two page flyer the night before of bullet points that they were to talk about when they were with the Congressman or Senator.
Even I was given these bullet points. I put them in the little folder and never even looked at them. I am a dementia patient, not a crusader.
When you see a person at a speaking engagement, 99.9% of the time they are reading what they are saying from notes that they have with them.
This is normal. Everyone from our President of the United States to the local Mayor of your city does this.
I don't. I can't. You see when you have dementia, you can't go by notes, or something you wrote down the night or day before. It just doesn't work.
I always have and I always will speak from my heart. Do not believe for one second that some of the things you hear from Glenn Campbell, or Pat Summit, Seth Rogan, or any of these poster boys is from the heart.
It isn't. When you watch Seth Rogan do his bit in front of Congress that day, he too is reading from a script if you will. This is what these people do.
If he had spoken from the heart, there would have been no need for him to read what he was saying. That tells you everything you need to know about how sincere some of these people are, and how clueless some others are as well.
To think that anyone in the AA would think they could hand a dementia patient a two page synopsis of bullet points for them to go over and go by, well, again it's absurd.
I didn't go by their bullet points. And what I had to say was from the heart. The issue here is no one listened. They don't.
I don't know how else to put this into words that others will understand.
Write you Senator. Write your Congressman. This is what you will hear. I am here to tell to you if you do, don't expect any change. If you get anything back it will be a draft letter that is what you want to hear.
I doubt that the representative will even sign the thing. Most times their minions sign their name and put their initials to show that they signed the letter and not the Congressman.
But little people know or understand this. I wish things were different. I wish I could tell you we went to Washington and it was indeed a good thing.
I have been and talked to many important people in the last five years plus over this dementia thing. And I can tell from experience everyone from the local elected officials here, to our State Representatives to our Federal representatives, I have yet found just one who has done anything.
That is the truth. When I go them and talk about caregiver funding, they look at me as if I have a third eye in the middle of my forehead.
They have the deer in the headlight look and nothing, not one thing is ever done.
If I sound disappointed, I am. Desperately. But we tell the truth here. We don't sugar coat anything. And what you have read here is just a small proportion of what I have witnessed in the last five years.
Even if you find a candidate that will tell you he will fight for you if elected, they won't. It's politics. And it's sad. And somewhat criminal.
You ever hear of taxation without representation? We live it everyday here in America. And it's sad.
In closing I want you to think about something. Chances are Glenn Campbell sadly will not be here with us much longer. The day he succumbs to this disease all you will see and hear is how he brought so much awareness to dementia and how it will change things.
He didn't and it won't. Two weeks or less after he has passed, the world will long forget about the Glenn Campbells and what he or his family did or did not do.
We had a President die from Alzheimers and nothing was changed, do you really think a country singer form Arkansas is going to make this huge impact?
He won't. And that again is the truth. I wish it wasn't but it is....
© Rick Phelps 2015
Sunday, October 4, 2015
It's been a while since I have posted. We were blessed that Leeanne and Louis were able to come to Ohio and visit with us last week.
We had a wonderful five days showing them the sights and sounds of Amish Country, some of our local restaurants, and Louis and I beat them at Trivial Pursuit.
There wasn't a night we went to bed before 1:00am, we sat and talked for hours. They got to experience camping at our camper which was so much fun for all.
All in all we had a really good time. I had one evening where I had to take a couple of hours and lay down.
Both Phyllis June and I would love to be able to go to Washington State and visit with them sometime, but with the way things are, I just cannot travel that far.
There wasn't an hour that went by that we didn't discuss Mp. I asked Leeanne if she ever thought of this journey. How she has helped countless numbers of people.
Total strangers. Yet, family. I even got some one on one time with Louis and told him how much I appreciate what his wife does day in and day out for us here on Mp.
They are very special people. I knew very early on that Leeanne was the one who is going to lead us in the future of Mp. With the help of Phyllis June, all our administrators and you the members, I can rest assured that when I am no longer to post, or to really know what is going on that Mp will be just like it is now.
Many people who come here have a hard time understanding that what we do is Awareness & Support. We don't do what the typical dementia sites do, talk about cures, or the latest so called remedy to slow this disease.
We offer Hope, but not false hope. We take that person and family who has just been thrust into this horrible disease and tell them we can't "fix" anything, but we can make the journey a little better.
This all started as most of you know from our dinning room table on early Thanksgiving Day morning back in 2010 the same year I was diagnosed. I knew from going to many other sites that were dementia related, there was something missing.
Something that to me seemed so obvious, yet few sites were doing it. Most sites you go to will let their members do what we can an "all skate".
In other words, anything goes. That serves no purpose and helps no one. What we do is talk to one another. Pour our hearts and souls out. Sometimes about things we cannot even discuss with our own families for one reason or another.
We don't talk about cures, but we pray for the day that a cure is found. We don't talk about remedies that will slow this horrible disease, as to date there is none.
When someone posts about coconut oil being a cure all, we look at that as a teachable moment. Coconut oil does no slow the progression of dementia. Period.
That for some is hard to hear, and some will never believe it, though it is a medical certainty. I have said for years if you really think that something as simple as coconut oil would slow the progression, do you really think you could waltz into Walmart and buy a jar for like three bucks?
Rest assured, if and when there is something that does slow the progression of dementia, you won't be buying it al Walmart for three dollars.
Speaking the truth here is hard for some to hear. The truth sometimes is always more difficult to hear and to deal with. It is much easier to paint this picture of simplicity that some people have.
I wish I had a dollar for every time someone told me "It will be alright". It won't be alright, and nothing about this disease is ever going to be alright.
Telling people, caregivers, family members, and even other patients these things is tough. But, if it was easy, this would have already been done.
In other words, the next time someone tells you "everything will be alright", ask them, "How do you figure that"?
We don't sugar coat anything here on Mp. We never have and we never will. What you read here is very difficult sometimes. If you want sugar coating there are plenty of sites who do that.
We're just not one of them. Just like there are plenty of sites that have these half baked idea's of things that will slow the progression of this disease.
Not even the drugs that some of us take from our doctors will do this. Aricept will not slow the progression of dementia. Namenda will not slow the progression of dementia. And the Exelon Patch will not slow the progression of dementia.
These are the three most well known drugs used in the treatment for dementia. What they will do is perhaps lesson the symptoms of this disease. Perhaps is the key word here. About three years ago the FDA made the manufacturs of the Exelon Patch to redefine there claim of slowing the progression of dementia. They had to change there claim to the patch may lesson the symptoms, not slow the disease.
I take many pills a day. Like other patients with dementia. However, not one of my medications is for the dementia. Everything I take is for the symptoms of this disease.
This is where many of miss the boat. There are medications out there that will help lessen the symptoms of this disease. Not slow the progression, and not stop the symptoms. But simply lesson them.
Depression. Anxiety. Sleeplessness. Fear. Apprehension. Loneliness. Confusion, and of course Memory Loss. Memory loss is the one thing that is tied to dementia, yet there is so much that one deals with other than just memory loss.
These are but a few of the symptoms a patient can struggle with. There simply is no drug that will "fix" all of these. There are medications that will lesson these symptoms, and for every patient these symptoms are different.
Don't get hung up on cures, and drugs that someone claims will slow the progression of dementia. There is none. Your goal should be to make your loved one as comfortable as possible.
"Are they Safe'?
"Are the Pain Free'?
"Are they Content"?
These are the questions you should ask yourself. Three simple questions and if you can answer yes to these with some reason of certainty, then you are doing the very best you can do.
Mp will be here long after I am gone. It will be here long after all of us are gone. Until the day this disease is cured and there will be no need for the Support and Awareness, we will be here.
I am a realist. And I know that there is nothing that is going to come in my lifetime in the way of a cure. My prayer is our grandchildren's kids will never have to deal with dementia.
One day this will be something that is talked about in the past tense. One day...until that day we will carry on. Reaching out, helping one another through this nightmare. Telling them they are not alone. Telling them we cannot "fix" any of this. But we will be there, with them, every step of the way, "While We Still Can..."
© Rick Phelps 2015