Monday, August 31, 2015

Dementia and Driving

Driving and Dementia. This is a very tough subject. Obviously if your loved one is at a certain stage in this disease, they should not be driving. 
So, what to do? How do you as one of their children for example, or spouse tell them and make them understand they simply cannot drive? You will horror stories about this topic. How the family just could not get their loved one to quit driving. This post is about what could happen if you indeed ignore the obvious and let them drive. 
The frist thing to realize is just because someone has been diagnosed with dementia that alone doesn't mean they cannot drive. I am in my fifth year of this disease officially, ninth year or so unofficially and I still drive.
Not much, and not often, but I can drive. Many times dementia patients are lumped into one category and for whatever reason some think they cannot nor should not be driving. 
This is just one of the many stigmas of dementia that have come about from the so called "experts". More than once I have been on a radio show and had to go toe to toe with the host of the show about driving and dementia. 
Some people think for whatever reason that they know me, I have dementia and for that reason alone I should not drive. Now, they don't know me, they have never met me and likely won't ever. But, because these are so called "experts" in the field they think they know. They don't. 
The one thing you will learn if nothing else is that just because someone has a title behind their name, that doesn't make them an expert. I can and have met doctor and neurologists who haven't a clue about dementia, yet there they are telling me what I need to do. 
When someone espouses that because they have a MD behind their name they know everything about this disease what they are really doing is trying to convince you they do. 
Nothing irritates me more than someone who is not a patient telling me, a patient, how or what I should be doing or feeling. 
I tell people who ask me about their loved one driving, that the time has already come for them to not be driving simply because they are asking about it.
About 99% of the time, when a family is discussing driving and their loved one, the time for them to not be driving has almost certainly arrived. 
The one thing you should do is don't be the bad guy here. Contact their doctor and have them tell the patient that they no longer can be driving. If you really think this won't work, then contact your local BMV and request they be tested. 
Their doctor should do this for you. But before you go to those lengths, just talk to the person. Tell them that you have noticed that their driving has become more and more difficult for them.
Do or say whatever it takes. This is one of those issues where you have to do, what you have to do. 
I still drive. Like I said, not much, and not far. Maybe twice a week, maybe fifteen miles total. I run to the market we have here in town, it's about a mile away, or I drive to our camper, which is about 12 miles away.
I don't drive out of town and I don't drive when Phyllis June and I go anywhere. She has driven when we go anywhere for many, many years. Way before dementia came into our lives.
I was in EMS and Law Enforcement for a long time and had to drive for a living. I have elected not to drive a long time ago, beings I had to for my careers.
Giving up driving will not be an issue for me. Today. That could change. I simply don't don't drive enough for it to be a factor of any kind. But there are those that driving is the one last thing that takes away their independence. 
You, as the caregiver have to take these people where they want to go, when they want to go if you take away their driving. They must understand that they will not be stranded at home, not being able to go anywhere. 
If your Mother has driven to the beauty shop for some forty years, telling her one day she can't do that anymore is gong to be difficult to say the least. 
But, the reality is, we live in a society that is sue happy. People will sue you for anything, and if your loved one is involved in a accident, God forbid someone is seriously hurt or dies, there will be a law suit, you can bet on that.
My insurance company for example knows of my diagnosis. To not disclose this would be fraud in my opinion and just come back to bite us in the end. They told me they will cover any accident I am in, be it my fault or whom ever is at fault.
But, they will immediately drop me after that. I can still get insurance, but I would not be able to afford it.
So, just not disclosing this to the insurance companies is not the answer. Be truthful.
Take the keys, make the vehicle unable to drive by taking off a battery cable, or sell the vehicle. Do what you have to to keep them from behind the wheel.
One accident could land them in jail, prison, or a cemetery. And no one wants that. The law is the law. And if your loved one is involved in an accident where someone dies and it is attributed to their condition, they will be held accountable.
But always remember that just because someone is diagnosed with dementia, that doesn't mean they cannot drive. When this happens you are lumping all patients together and that is not only wrong, it is discrimination.
Just as making a a patient take some sort of special driving test because they were diagnosed. This too is discrimination. Driving is a privilege, not a right.
But you cannot take away this privilege just because of a dementia diagnosis. Many patients can and do drive. It is imperative that the caregiver watch for signs that clearly show their loved one should not be driving.
As crazy as our system is now a days, I can see where the caregiver could be sued for allowing their loved one to drive, knowing they have dementia. I am not saying this would happen, or that you would lose in a court of law.
But I can see someone trying to sue you for allowing someone you have POA over and allowing them to drive. One law suit can ruin a family.
Be smart. Have a plan, then as we say, have another. Driving and Dementia. The two can happen, but as always one needs to know their limitations, and in this case, the patient never will...
© 2015 Rick Phelps

Sunday, August 30, 2015

It Depends

It depends. 
What happens if you take your loved one off their medication without the direction of a doctor? It depends.
What happens if your loved one gets confused and you are out in public, what can you do, what should you do? It depends.
What happens when your loved one tells you day after day they miss their Mom, when their Mom has been dead for year? It depends.
What do you do if all of sudden you loved one becomes verbally abusive? It depends.
The reason the answer to all these questions is the same, is because the person doing all these things, although they have the same the disease, but they are very, very different. 
What works for one, may not another. I know a patient who's doctor put them on anti-psychotic drugs. The patient wasn't anymore anti-psychotic than I am. 
They have a disease of the brain, that is what is causing the outbursts. But to convince the family was like pulling teeth. Finally, they got the doctor to take their loved one off of this anti-psychotic drug and put them on a anti-depressant. 
Within one full day they see a huge difference. The patient was sleeping, when they hadn't slept in days, the patient was mellow, because of the anti-deprerssant. 
So, taking them off the anti-psychotic didn't solve the issue that they still have dementia, but at least now they are being treated for the symptom of dementia, not being anti-psychotic. 
Yet, some patients are indeed on anti-psychotic drugs and they help, why is that? It depends. 
Get my drift here? Every patient is indeed different. They have the same disease perhaps, but they have different personalities. You don't lose your personality because of dementia.
Does it change, your personality? Of course. Why? It depends...sigh
© 2015 Rick Phelps

Saturday, August 29, 2015

Difficulties With Dementia

Some of the most difficult times I have had with this disease is when for whatever reason we have had to have a repairman of some sort here at the house.
If you have ever had to do this, you can feel my pain. Direct TV, Internet service providers, or just someone to look at our furnace. 
The very first thing they do is assume I know whats going on. I don't. That is the very reason they are here. 
I have no problem explaining why they are here at our house, but I do have a problem with them playing fifty questions with me. 
Most times we inform the company that I do indeed have dementia and asking me a lot of questions is just not going to work. It never works, but we do try to educate the company or provider that are going to be here. 
Phone calls are a close second to being the most difficult thing to do also. When a dementia patient is on the phone, from the very time they answer the phone things start to go downhill in hurry. 
First off, who is it that's calling me? When I ask, they tell me of course, but it takes me the next few minutes to try to get in my head who this is. All the while they are talking or asking me about the reason they called in the first place.
When I am on the phone, which is rare, but when I am you will hear a lot of "Yea, uh-huh, yep, alright, and okay thens" I just agree to whatever is being said, all the while I have no idea what the conversation is even about.
Many times over the past few years I have done countless phone interviews for magazines, radios shows, TV spots, and on and on. For about three years now I don't do any of these unless Leeanne Chames or Phyllis June is on the phone with the caller as a three way call.
I have never intentionally lied to anyone about anything when it comes to my diagnosis or how I deal with this disease daily. However, I am a dementia patient and I may say some things that aren't as factual as I want them to be, again on account of the disease. 
When doing interviews it is very important that they use what I say, not what they think I said, or what they think I meant. Hence, I have someone on the call with me to correct anything I may be talking about and get confused with.
I have to say conducting phone interviews or even Skype interviews is a very stressful thing for me anymore. We have one coming up next week to do for someone about something. 
Leeanne takes care of all my interviews, and she even deals with the people if they are asking about a speaking engagement they would like to have me at. 
Those are now few and far between. The last one we did in Illinois was a two day event, where I spoke to professionals one day, and to lay persons the next. 
That won't happen again. I hadn't thought it through, but doing two events in the two days is more than I can do. I got through them, and the college I was speaking at said I did wonderful both days.
What are they going to say? Thursday was good, but Friday was a bit off? I remember losing my concentration in the middle of my talk Friday. I turned and looked at Phyllis June and said, " I don't know where I am". She reminded me what I was talking about, thinking I had forgotten what I was saying, when in reality when I said "I don't know where I am", I meant just that.
I had no idea where I was, what I was doing there, and what on earth I was talking about. There I was, standing in front of several hundred people and didn't have a clue what to say. 
I somehow got through it, and no one even noticed. They just assumed I had forgotten my train of thought. 
So, speaking engagements have been put on hold since then and I will never do two in a row. That was my fault for not thinking it through.
Everyone struggles with something when they have dementia. Some days for me it's making a cup of coffee, to not knowing where I am when I wake up.
Some are subtle, some are very frightening. Remember that any small change in your loved ones routine can and will effect them. Even if it's just something like the cable guy coming to repair your internet or cable tv.
It's the little things that can turn a very calm day into an nightmare for a dementia patient. And you never know what it will be that sets them off.

Tuesday, August 25, 2015

Dementia And Wandering

"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

Friday, August 21, 2015

We Don't Mean To

I think the one thing people, caregivers, family members, should realize is that "we don't mean to."
When your loved one does the things they do, they don't mean to. When they say things that offend you, hurt you, mentally or physically, they don't mean to.
When I ask my wife over and over "What time is it? What day is it?" I don't mean to.
When your loved one is up all hours of the night, and you get maybe two hours sleep, they don't mean to.
When you are at the end of your rope, and say and do things as a caregiver, you don't mean to.
The thing is, this disease causes the patient and the caregiver to do or say things that they would not normally do or say.
Everything we do from the second we are born, is controlled by our brain. When you suffer from dementia of any kind then everything you do has to be attributed to that disease. 
It's not the person doing what they do. It's not the person saying what they say.
For those of you who have read my book, "While I Still Can..." or have listened to me at a conference, you know I have done some pretty off the wall things since my diagnosis.
I took some of the things I have done, and tried to make light of them during a speaking engagement to give the audience a different look at dementia.
But there is indeed a very dark side to this disease. A dark side that I rarely talk to anyone about. To do so I would have to relive the horror of what we patients go through over and over.
There are things that I share. 99.9% of the things I deal with I do share in hopes it will indeed help a caregiver or another patient understand what it is like to deal with this on a daily basis.
But that .1% I share with no one. The reason is simple, most people want to try to come up with a solution to why things happen with dementia. If I told of every nightmare I have, or every fearful event I go through daily, I would probably lose my mind.
There are things that you will never know as a caregiver as to what your loved one is dealing with. It's just too dark of place to go and to talk about.
But the things we do, the things we say, the shadowing, the up three or four times a night, the verbal abuse, the not eating, the not remember, and on and on and on...we simply don't mean to.
It is indeed the disease. It's always the disease...

Tuesday, August 18, 2015

Pick. Your Battles Wisely

As I read the posts here, the one thing that keeps coming to mind is "pick your battles".
I guess it's because I know the struggles I deal with, and most times I try to put them in perspective. Not dwelling on what I can no longer do, but rather seeing what I still can do.
I understand caregivers frustration. This is a horrible disease and one that is relentless. What bazaar things that happens today, could only be topped by what could happen yet tomorrow.
The one thing I can tell you is, as bad as it will get worse. And that sounds mighty dismal, but as always we don't sugar coat anything here.
And by saying that things will get worse in no way means what you are going through right now is unimportant, or not something to be upset over.
It's natural to get upset when things go haywire. What you don't want to happen is for this thing to get the best of you. You don't want to get all stressed out because your loved one refuses to shower, or eat, or go to the doctor, or any of the dozens and dozens of other things they do daily that stress you out.
Pick your battles. Remember, the three most important things:
Are they Safe?
Are they Pain Free?
Are they Content?
If you can say yes to these three things, you are doing the very best you can. Some days you will and can do more, some days you will be lucky to answer yes to any of those three questions.
I keep coming back to take one day at a time. This is a saying that has been around for ever, but in this case it is so true. I see members here worrying about what is coming, how things will be in a week, a month, a year. They worry about if they too will get dementia.
I have often said worrying about what is coming down the road or if you may have dementia, or it is coming, is like carrying around an umbrella everyday because you think it may rain. It doesn't make sense. 
All of this is unneeded stress put upon yourself. Even if somehow some doctor could tell you for certain what the future looks like for you or your loved one in a month, or year, that would only be an educated guess.
No one knows how fast or how much of the brain will be effected by this disease. All they know for certain is that it will continue to progress, to what degree and where in the brain is not possible to detect. It will continue to get worse, that is for sure.
Some days you will swear your loved ones have gone from stage 2, to stage four overnight. This could last or change in a matter of hours. There is no common denominator when it comes to this disease. 
As bad as my day may be today, this may also be the very best day I have, ever. You just don't know. Cope with it is easy to say. Spend about a day with a dementia patient and you will then begin to understand what caregiving is about. 
Just remember to take one day at a time. Do the very best you are able to, to take care of your loved one. And know when it is time to ask for help. Sooner or later you will need help. 
It's the ones who need help, and don't ask that put themselves and the patient at risk. Know when to ask. And don't be afraid to go outside the home to search for help.
Your church if you have one. A close friend. A sibling, anyone you can just unload on sometimes will help. And don't forget, we are always here to listen. It's how we help one another all hours of the day.
You can post anything here within reason of course, and someone will take your hand and tell you they understand. Will it "fix" anything? No, but just knowing you are not alone can take so much stress off of you. 
Knowing you can share things here you can't even talk about to your family. We are here to help. And we are changing lives, one person at a time...

Monday, August 17, 2015

Dementia, Driving and Stigma

Dementia and discrimination. Every wonder about this? There is definitely discrimination when it comes to dementia. 
I attribute it to the stigma of the disease. There are literally thousands in the dementia field that have no idea what they are talking about, yet they assume they do. Because of the stigma of the disease itself 
Take one instance I deal with all the time. Driving. I have had to defend my right to drive thousands of times. Driving itself is not a right, it is indeed a privilege.
However, when you take a certain classification of people, in this instance dementia patients and lump them all together, as they should not be driving that is where discrimination comes into play.
You cannot lump any patients together. There are no two patients that are alike, yet to hear the the so called professionals, if you have dementia, surely you cannot drive. 
I do not drive very much. But this came about because of my career. I was in a career where I had to drive for a living. For the better part of thirty years Phyllis June has drove 99% of the time when we go anywhere. 
I just got sick and tired of driving. Now, I drive maybe three or four times a week and it is always local. No more than fifteen miles from our house. 
This is because I never need to go anywhere on my own out of town for instance. I would never attempt to drive to Columbus for instance on my own anymore. 
I am sure I could if needed to, but I don't need to. But, some people who for whatever reason lump all the dementia patients together, feel that because some patients cannot drive, we all should not be able to.
Insurance is another place where we are discriminated against. I was told when I was diagnosed that our insurance provider whom we have had for decades would indeed cover me, until there was an accident. 
Then, I would be dropped. Because of my diagnosis and no other reason. This is discrimination. 
I have been told I should be required to take a driving exam every year, because of my diagnosis. Again, this is discrimination. 
Granted there will come a day when I can no longer drive. And granted there are millions of dementia patients who cannot or should not be operating a motor vehicle. 
But you cannot say that about all dementia patients, yet it is done all the time. 
There are days when I would not get behind the wheel of car. Knowing that my mindset is just not there. Just the same if one suffered from severe depression, there are days when they too should not be driving. 
Every case should be dealt with individually. When anyone tells me, people who don't even know me, have never met me, and probably never will but still say I should not be driving, to me is absurd. 
The one thing that is common with this disease is how so many think that all patients are alike. They are not. I am presently into my fifth year of having being diagnosed officially. 
I had issues at least five years prior to my diagnosis. Yet, my ability to drive is no worse now then it was twenty years ago. Will it get worse? Of course. 
But that needs to be dealt with on a case by case basis. The one person who will be able to tell me I can no longer drive is my wife. 
As of now, that will not be such a big deal. Like I said, I rarely drive now. But, don't lump me or any other patient into this category of not being able to drive because we have dementia.
This all came about from the stigma of the disease. It's wrong. We have enough to deal with, without being told we cannot do something because we have dementia. 
This is wrong on so many levels. I could give you dozens of other examples where patients are being discriminated against all the time. But driving is the number one thing. 
There are patients like I said who cannot drive. But we are not all like that. When you say that someone should not be driving because of dementia, that tells me you don't understand about dementia. 
And this goes on all the time, sadly...

Monday, August 10, 2015

" While I Still Can" Rick Phelps Quote

"While I Still Can...". This is a saying that many people use in their daily lives. 
Could be talking about taking a long vacation that they have put off till their golden years. Could be talking about doing things with their kids or grandkids. Or they could mean they want to do certain things, just while they are able to.
But for me, a dementia patient these words take on a very different meaning. I found myself saying "while I still can" over and over again after my diagnosis. 
Thus, this became what many will call a mantra of mine. I used this very saying for the title of the song that my good friend Dan Mitchell and I wrote. 
I used it for the title of the book that I wrote. And I use it in everyday conversation with just about everyone. 
You see when you are diagnosed with dementia, it's like you are instantly put on a clock. A clock that is ticking down to the day that you will no longer be able to do many things, and in time you will lose the ability to do anything. 
And these "things" differ for every patient. It may be that you can no longer read. I lost the ability to comprehend what I am reading about four years ago, probably longer. 
It could be one will lose the ability to be around groups of people, or take vacations, or be with their grandkids, or work on their hobby that they have done for decades.
What we lose as patients, comes slowly, but it certainly does happen. Slowly but surely you will find that the things you did, without thinking, now require immense concentration, and in time you simply won't be able to do them at all. Concentration itself is something I no longer capable of.
This for me has been a slow steady process. The one thing I can recall losing overnight was the ability to tell time. The conception of time. I can look at a clock and see what time it is, but I have no concept of time.
Ten minutes could seem like an hour. It no longer matters to me that this for instance is Monday. I ask my wife constantly what day it is. Why? Because I no longer have the concept of what day it is. I have no reference if you will.
Most take this for granted and know what day it is instinctively. With this disease, you no longer have anything you do that is done with instincts.
I remember the day that I woke up one day and my cell phone had become a rock to me. I had no idea how to send messages with it, check emails, or to simply make a call.
For whatever reason, I had lost the ability to use the cell phone I had at that time. So, common sense told me get a very simply phone, one that just does simple things like take and receive calls. None of the other dozens of things our cell phones now do for us.
This one would think would have worked. But I found out that even though the new cell phone I had gotten was as simple as it gets, it was still new to me and with dementia you simply can't do new things.
I then after a period of time went to a iPhone, which worked perfectly for me because I had used only mac products for years and the iPhone was indeed just like my iPad, mac computer, and all the other things I had been using for decades.
When I use the saying, "While I Still Can...", this means much more to me than many people will ever understand. Things change with this disease, sometimes daily.
Long ago I made peace with what is happening, but it certainly doesn't mean I have to like it. The thing is, everything is going to change.
Today, as bad as it may be, could be the very best day I have ever again. You simply don't know. No one does.
The things I attempt now are very limited. I learned long ago that I think I can do things, but in reality I can not. Anyone who has read my book will see some of the things I have done since dementia came into my life.
Some of them are down right comical, some, not so much. I mixed humor with all the struggles I deal with daily when writing the book.
It is very important to me to keep my humor. I have always been a person who doesn't take life to seriously. I like to have fun, like to jest, like to look at things perhaps in a way others do not.
I still have that quality, only because it is in my long term memory. This too will fade in time. One of the things I will miss is when I know longer have the ability to see the humor in things.
I am not saying that life is one big joke. I am saying that many of us take what life throws at us and makes mountains out of mole hills.
If your love one refuses to shower or bathe, is it really that earth shattering for example. How dirty are they? If there is a problem with body oder that can easily be remedied with a few shakes of baby powder.
There is going to be a whole host of things that happen that are far more important than your loved one refusing to shower. Pick you battles.
What I can do now is limited. The problem is when I am alone, I sometimes forget my limitations. I will continue to do the very best I can. I will find humor in things that others may see nothing but despair or aggravation.
Is this easy? Of course not. None of this is easy. It infuriates me to no end when someone tells you that things will be alright.
There is nothing alright about having dementia. And there never will be. Some say this, because they don't know what else to say.
"I have Dementia, Dementia does not have me." This is a saying I use and have for a very long time. It is now being used by many other patients. Sometimes what I say is taken and used by many other people.
Some people who for whatever reason do not have one original thought of their own about dementia and how it effects them. They take what I say one day, and almost immediately it shows up on their FB page the next day.
I don't own the english language, but I do have what is called intellectual property. We all do. Things I post that are copied and used by others is in a way one of the greatest compliments one can get.
Some do this inadvertently, some do it for spite. Some do it because they have no idea what to say, but want to sound knowledgable in the field of dementia. You don't have to be an expert in dementia to understand what this is doing to you.
All you need to do is be a patient. Express what is going on in your world, not in mine. When taking what I say and using it, it takes all credibility from what you are saying.
These people don't or won't take the time to express what they are dealing with, so they use what I say, as if it is their original thought. I can tell you this has been happening for years. I find it sad, that one cannot express themselves without using what someone else has said. But again, this is the grand scheme of things is not all that important.
I once said someone someday will ask when I am long gone, "What was it this Rick Phelps guy said anyways?" When things I have said have been copied by so many, it will be difficult to decipher what I said, and what others took and used it for their own thoughts.
I will take one day at a time. I will do my very best. I will find some good in whatever life throws at me. I will share my experiences with others in hopes of them being able to understand what their loved one is going through.
I will do all of this. And much, much more. In spite of dementia. And if others still find a need to take what I post and use it for their own, I will carry on, "While I Still Can..."

Friday, August 7, 2015

Do Not Blame The Patient For Their Behavior

Why does your loved one do the the things they do? Are they doing these things to irritate you?, to get attention?, or just because they can?
None of these answer are correct. I can tell you this from a patients perspective. For a patient to do things that intentionally upsets their families they would have to be calculating. 
With dementia, calculating does not compute. I cannot say how a caregiver feels about the things their loved ones does, I can only assume at times, even most of the time it is frustrating to say the least.
When someone is diagnosed with dementia of any kind, it is a medical fact that they could have had this disease for up to ten years prior to the diagnosis.
The changes you see in your loved one have been coming on for a long time. This did not start at the time of the diagnosis.
What happens first generally is the patient loses their short term memory. Mine has long been gone. Then slowly but surely this disease progresses to different parts of the patients brain.
There is much debate on where it spreads to, and how fast it progresses. The thing you need to know is it will progress, and things will get worse. And no two patients are the same when it comes to the progression.
After a period of time when taking care of a dementia patient the feelings that come out from caregivers are all born out of frustration.
Things like "Dad is dong what he does to get attention", or "Grandma knows when it's time for a bath, she just fights me on this because she can".
Like I said in the beginning, to do this one must be calculative, they must possess the ability to do things, plan things out that will irritate their caregiver.
Being a patient, I can tell you that this is just not possible, Now, are there cases where the diagnosis may have been wrong, that the patient is indeed suffering from something other than dementia and acting out because they can? Of course.
But if you loved one indeed has dementia, dementia of any kind, they do not do things to frustrate anyone just because they can.
Sometimes because of the stress of caregiving you have to lash out at something or someone and blaming the patient for intentionally doing the things you are in a way of relieving the stress this whole thing causes.
We are always looking to blame someone, and sadly sometimes it is the patient. Being in the mid stages of this disease I get that. I can see where the things patients do can be so overwhelming that there has to be blame assigned to someone. Why not them?
I hate to say this is normal, because there isn't anything normal about this disease. But for a caregiver who deals with the daily, hourly, and even every minute of the struggles that comes with this disease there is no wonder blame is sometimes directed toward the very person causing this stress.
When you or if you are at that point a couple of things need to happen. You need some respite. Respite is nothing more than a fancy way of saying I need to get away from this situation, or I am going to lose my mind.
Saying that one needs respite and making it happen or two totally different things. With all that goes on in taking care of a patient, when do you have time to find someone who not only knows your loved one, but your loved will be comfortable with you leaving them with that person?
And when do you have time to get that person up to speed on what it takes to actually sit with a dementia patient for a few hours? One cannot just call another family member and have them come over for a few hours.
You can, but this likely will not work in the long run. And the respite you are seeking will just be you worrying every moment you are gone about how things are going while you are away.
Hence, that is not respite. So, what to do? The answer is simple. But making it happen is very, very difficult. Have a plan. Plan for this to happen. Plan for the day that you throw your arms up in the air and say "Are you kidding me? Who can do this? I need to get out of here."
This will happen. And you may look at the one person who is to blame for all of this...the patient.
They are not, of course. But who else is there to blame? No one. Although this happens regularly, you will not hear this talked about by any one of the dozen or so people who get paid big money to do seminars on how to deal with stress and the patient.
For them to do this they would have to put forward some advice that is not let's say politically correct.
There is only one way to deal with this kind of stress. You either have to get away from the situation for some well deserved respite, or you need to start thinking about placement. The situation is not going to just get better or go away.
I have said a thousand times there is only two choices in the end that you can make. You either place your loved one, or you don't. Neither of these are always right for every situation.
But these are the two choices you will have one day. Does in not make sense to plan for this? Of course it does, but rarely will you find a family that has.
Over and over you can read posts here about what can I do as a caregiver.? Should they place their love one? Is that what they would have wanted? Or do they prefer to be at home till the end?
The answer is, you should have discussed this with your loved one years ago. When a family doesn't know what to do at a time like this, it's simply because no one took the time to have a plan for this.
The next time you want to think your loved is doing what they are just to spite you, to aggravate you, or just because they can, remember that they have a disease of the most important organ in the human body. The brain.
And everything they do, everything they say, everything they think, is indeed controlled by this disease we call dementia.
I wish there was a better answer. But blaming the patient is not it. If you do, and you do it repeatedly, it is time to look at yourself and see if this is something that you can continue to do.
When a person figures out they cannot do this caregiver thing anymore, they have not lost. They have simply gotten to the point that they can no longer give this patient the care that they need and deserve.
It's the ones who know this, and ignore the issue. There is no downside to placing a loved one too soon. There are many downsides to waiting too long, and none of them are good...
I am sorry this post is so long. I have been working on it for a couple of days. A lot of copy and paste went into this. I may have gotten of track a few times, but I hope you get my drift.
You will never find anyone who is more thankful for what the caregivers of us do. I am humbled every time I read posts about what the caregiver goes through, yet keep going.
Just know this, your job is a caregiver can only be done if you take care of you as well. Do this, and know your limitations. We all have them. Accepting them is the hard part...

Thursday, August 6, 2015

Dementia and Insomnia

Sleepless nights. We all have them. And you don't have to be a caregiver or dementia patient to experience sleepless nights. 
However, as we all know being a caregiver, you don't sleep at night mostly because of worry about what your loved one may, or by being up with them all hours of the night.
No matter what your profession, or what you do in life, we all need our sleep. In time those of you who do not get the proper amount of sleep, this will catch up with you.
I am a firm believer that when you are sleepy, you will sleep. It's a phenomenon that the human body has to do. Sleep.
I want to talk to you what it is like to have sleepless nights as a patient. In hopes of maybe explaining why your loved one may be doing what they are doing.
Everything we do, we do because our brain has told us to. What we say, how we say it, what we do, how we do it, where we go, how we get there and on and on and on.
There is an old saying that goes something like "try to not think of anything". In other words, make your mind blank. You can't. Because at the very least you are concentrating on trying not to think of anything and using your brain to accomplish this.
When you have a disease of the brain all of this is compounded to the third degree, or more. 
Here is just a small list of things that sleeplessness can and does cause.
1) Accidents. In the workplace, in the home, and in the car.
2) Loss of concentration. Sleep plays a critical role in thinking and learning. Lack of sleep hurts these cognitive processes in many ways. First, it impairs attention, alertness, concentration, reasoning, and problem solving. This makes it more difficult to learn efficiently.
Second, during the night, various sleep cycles play a role in “consolidating” memories in the mind. If you don’t get enough sleep, you won’t be able to remember what you learned and experienced during the day.
3) Sleeplessness cause depression. Over time, lack of sleep and sleep disorders can contribute to the symptoms of depression. In a 2005 Sleep in America poll, people who were diagnosed with depression or anxiety were more likely to sleep less than six hours at night.
The most common sleep disorder, insomnia, has the strongest link to depression. In a 2007 study of 10,000 people, those with insomnia were five times as likely to develop depression as those without. In fact, insomnia is often one of the first symptoms of depression.
4) Sleeplessness makes you more forgetful. In 2009, American and French researchers determined that brain events called “sharp wave ripples” are responsible for consolidating memory. The ripples also transfer learned information from the hippocampus to the neocortex of the brain, where long-term memories are stored. Sharp wave ripples occur mostly during the deepest levels of sleep.
5) Sleeplessness impairs judgement. Lack of sleep can affect our interpretation of events. This hurts our ability to make sound judgments because we may not assess situations accurately and act on them wisely.
I hate to quote facts, but the fact is sleeplessness is very dangerous. Now add to all of this, that on top of these five examples one has to battle with a brain disease that in itself makes it impossible to make decisions at times and you have a recipe for disaster.
When you are a patient, or at least for me, I can not lay in bed in the middle in the middle of the night, hoping to go back to sleep. It isn't going to happen.
How do I know this? Because I have been dealing with sleepless nights for a very, very long time. And this is one of those things to where everyone wants to "fix" something that cannot be fixed.
I have had horrible nightmares for years as well. Just going to bed I have to be so sleepy or I will lay there and my mind races a hundred miles an hour. Which leads back to what I was saying, try not to think of anything.
Everyone who deals with lack of sleep has issues. But dementia patients have so much more that this does to them. I can honestly say, I never get a good nights sleep. Never.
Thus, what issues I do have with some things are compounded. Now this doesn't mean that don't know right from wrong, or I get behind the wheel of a car and don't know how to drive, or I do dangerous things because I have not slept well.
It means that some things that should come to me automatically, sometimes I struggle with. Names, dates, addresses, keeping track of a conversation, watching tv and know what is going on...things like that.
We all concentrate on everything we do, without even thinking about it. But when you have dementia, that doesn't come automatically anymore.
Again, this doesn't mean that your loved one is dangerous because they didn't sleep well. It means what they do on a daily bases just becomes more difficult at times.
So, it's good to remember if your loved one isn't sleeping that what you go through from lack of sleep, is compounded many times over for them.
I wanted to add that if your loved one is sleepy, let them sleep. I know you may think if they sleep in the daytime they won't sleep at night. And that is probably true.
But we need to get our sleep, when we can. Almost daily I have to lay down now because I cannot function. I am mentally drained.
I may have gotten four hours sleep last night. I go to bed late, wake up at once nightly and have to get up, When I get up then I stay up sometimes for hours knowing that I cannot get back to sleep, so I may as well be up.
There is nothing going on at three in the morning. That is for sure. But I have to get out of bed. Just laying there makes things worse. Sometimes I think when a patient gets up in the middle of the night it isn't always to wander, they simply can't lay there/
If your loved one suffers from sleepless nights, you are most likely not going to find anything that works. I haven't. I take meds to make me sleep. Needless to say they don't work.
I have been to many, many doctors and they have tried many, many drugs and other things. Like I said, this is one of those things you cannot "fix".
You have to deal with it. And that leads to all sorts of problems for a dementia patient.