Thursday, July 30, 2015
"One of the great Pioneers of Dementia has passed". That is what you will see and hear.
My friend, Richard Taylor passed from complications of cancer on Saturday, July 25.
I first met Richard back in 2010. He was such a soft spoken man. He, like me had a lot to say on the topic of dementia.
We used to banter back and forth. That is what patients do, patients who are passionate about this disease.
He had his theories, and I had mine, which we both agreed was a good thing. There isn't one set of rules for this disease on how the patient will react to things, or how or what the caregiver should do.
The one thing we did agree on was that we, Richard and I were not the voice of Alzheimers.
He would hear this everywhere he went, just as I do to this very day. What Richard was, and what I am is a voice of Alzheimers, certainly not the voice of the disease.
Many times I am asked how I can be so "intellectual" and have dementia. My response has always been that if you were some what intellectual before, you will still have that, up to a certain time.
Richard Taylor was the most intellectual person I have ever known with dementia. As he would always say, "I have dementia, probably of the Alzheimer type".
I had never heard that before, and now people say it all the time. Richard did have dementia, that is certain. Was it of the Alzheimer type? Probably. But Richard was much more than a dementia patient to me.
He was someone who was fighting the good fight. Telling people, anyone who would listen about the plight of the patient.
We talked many times about how being a patient and an advocate for dementia takes so much out you, and at the end of the day, we are no better off today than we were five, ten, twenty years ago.
He understood that all the walks by the Alzheimer Association was not going to cure a thing. He also agreed with me that is the only way this disease was going to be dealt with was from billions of dollars being spent on it by our Gov't for research.
That wasn't and isn't being done yet to this very day. We talked many times about the stress being an advocate and a patient puts on patients of dementia.
People, for whatever reason, looked at us as if we knew everything there was or is to know about dementia. You want an answer, ask either of them, they know.
We knew we didn't have the answers. No one does. What we have is suggestions. What we do is tell others of our struggles in hopes that it would help another patient or caregiver in some small way.
I remember Richard and I disagree on having both patients and caregivers together on Memory People. He told me more than once that it wouldn't work, I in turn told him that is the only way it will work.
We agreed to disagree. The funny thing was, we talked about this many times, with both of us having dementia, we had forgotten that we had went back and forth on this subject many times.
Richard Taylor was much more than a dementia patient. He was a scholar of sorts. Those who knew him, knew how he spoke. With his soft voice, never getting excited, never raising his voice.
He was a lot like me, he used to tell me. We both said some pretty provocative things along the way. But that is what brings attention to this disease.
He used to call me the bad boy of dementia. How I would buck the system. I would tell anyone they had no clue what they were talking about, if they indeed didn't.
Again, the funny part about this is that Richard in his own way did the same thing. He was just more laid back in his approach.
I suppose the world of dementia has lost a Pioneer. But to me, he was just another man with dementia. The difference being he was trying to make a difference in how people looked at dementia and dementia patients.
He certainly did that. I will miss his soft voice of reason. I will also miss our bantering back and forth on things.
"Speak up". Was one of his sayings. And that is what he would want us to do. Speak up.
We talked many times knowing that there would never be a cure in our lifetime. But we also knew that millions would come after us with this burden of dementia and we had to keep the subject on the front lines.
Many times when a celebrity dies of dementia you will hear how what they did changed the way we look at dementia. That is never true. Most celebrities use their stature for things other than awareness of this horrible disease.
When Glenn Campbell dies he will be talked about for his music, he will also be talked about him having dementia. The latter will fade in days. His music never will.
Richard Taylor will always be known for what he has done in the world of Dementia. He helped hundreds of thousands. He will be missed.
My thoughts and prayers go out to his family. Richard, you fought the good fight and now you can rest, finally...
Monday, July 20, 2015
Bedsores. What are they, can they be prevented? First of all, bedsores are what is described in the medical field as a pressure wound.
The wound can start on any part of the body that is touching the surface and not being repositioned. It doesn't take weeks to get a bedsore. These can start in a matter of days. Thin skin is a problem with the elderly and these can happen very quickly. But you don't have to be elderly to get pressure wounds.
We call them bedsores, because people who get them are generally in bed and unable to move, hence they get pressure wounds from not being turned or repositioned.
Most times you will hear complaints about bedsores from people who have loved ones in a facility. The facility is staffed at the very minimum usually, and your loved one is just not being repositioned.
This doesn't make it right or justify why bedsores happen, I am just explaining the reality of them.
In a hospital, you tend to find less bedsores because the staffing there is much better. If you push the nurse call light to have your loved one repositioned, it usually happens within minutes.
Sometimes because of the staffing in a facility, this doesn't happen as it should. It is up to you to watch for these types of wounds. If you leave it to the facility they most likely will see a bedsore starting and repositioning is needed in treating the wound.
The key word here is most likely. Look at it this way, you have one aid to every eight patients or so. The fact is they simply don't have the time to do everything that is needed for every patient.
Repositioning is just one of the dozens of tasks that must be preformed on patients. There are countless things these folks have to do and there is only one of them for at least a half a dozen patients.
I am not giving the facility a pass on bedsores occurring and not dealing with them properly, I am merely trying to explain why they are not dealt with sometimes.
Then you always have the possibility of an aid simply not doing their job. All of these things factor in the finding of bedsores, and the taking care of them.
These things are dangerous. They can and will get infected that will cause all kinds of issues, up to and including death in some cases. MRSA is a big thing when it comes to bedsores.
Anyone in a facility can get MRSA, Methicillin-resistant Staphylococcus aureus (MRSA) is a bacteria that is resistant to many antibiotics. In the community, most MRSA infections are skin infections. In medical facilities, MRSA causes life-threatening bloodstream infections, pneumonia and surgical site infections.
Not to mention that these pressure wounds are extremely painful. Bedsores are very common in patients who have lost the ability to be mobile. Who just lay there.
In my 24 years in EMS I can tell you that I seen more cases of bedsores in home care than I ever did in a facility. In other words, patients being taken care of in a home setting, for whatever reason were not being repositioned and bedsores were very common.
You will find bedsores more prevalent in a home setting then you ever will in a hospital or any facility, simply because some caregivers either don't know to reposition their loved one, or they simply can't.
These pressure wounds can be found anywhere on the body. You will find them on their back, their sides, their buttox, their legs, their arms, even on the heels of their feet.
Anywhere a body part comes into contact with the bed, couch, wherever, you can find bedsores.
These can be prevented by simply repositioning. But you have to do this constantly. And when a patient is in a great deal of pain, or if they are combative, repositioning is not the easy as it sounds.
Watch for bedsores. Most caregivers do. But whether they are being taken care of at home or in a facility, bedsores do happen. And in my experience in EMS, they are more prevalent in a home setting.
Some are under the assumption that no one has ever died from a bedsore. That would be false. People have died from bedsores. They can and do go clear to the bone if not treated. To think this is not an issue is simply not true.
I just had a cousin die, not because of bedsores, but because of complications from diabetes. She did in the end have bedsores, because of her inability to move.
We watched them closely as a family, but they indeed did happen. We just made sure we or the facility turned her and what sores she got were treated.
She did in the end have MRSA also. So be very aware of these types of wounds. They can be deadly.
The world of dementia. "I don't know what to do" is something we hear almost daily here.
Not knowing what to do can come from someone who has cared for a dementia patient for years, decades even.
There is always a time when you won't know what to do. Why" Because this disease is so unpredictable.
Even when dementia is detected, it is an educated guess.
When dementia is diagnosed, almost every time the docs will say "You have dementia, probably of the Alzheimer's type"
The probably is the key word. Because there is no way to identify dementia with 100% accuracy without doing an autopsy of the brain. None.
What type? How long have we had it perhaps? And to what degree?
No one can definitively answer these questions, yet everyone has these questions.
I was "diagnosed" with Early On-Set Alzheimers in 2010. I knew I had memory issues at least five years prior to my official diagnosis.
Most times you will find that when someone is diagnosed the professionals will tell you they may have had dementia issues for up to ten years prior to their diagnosis.
The pill problem is indeed an issue with every patient and every caregiver. If a caregiver isn't worried or concerned that their loved is taking the right medication, they should be.
I have forgotten to take my meds dozens and dozens of times in the last five years. I have also many times taken my wife's meds instead by mistake.
Why? Because I have dementia. I don't know why, only know that the reason is the disease, no one can tell you why these things happen other than it all stems from the disease which is a disease of the brain.
The most complex organ in the human body. There are three things you can do that will help you with these issues.
Is she Safe?
Is she Pain Free?
Is she Content?
If you can answer yes to these three questions to a reasonable degree everyday, than you are doing what needs to be done.
All too often we put our health in the hands of the doctors, who don't have all the answers. When it comes to dementia if you find a doctor who claims he does have all the answers, it's time to look for another doctor.
Because they don't. This is one of the things you see over and over when it comes to dementia, the fact that caregivers and some patients believe everything that is told to them, or everything they read on the internet.
The only way a person can be diagnosed with 100% accuracy is with an autopsy of the brain. That is it. If your loved one is showing signs of dementia, then go with that.
If there isn't some sort of head trauma, or some other underlining issue that would cause a memory loss, hallucinations, sleepless nights, fear, anxiety, stress, and many, many other symptoms, then you most likely have some form of dementia.
Get another opinion. And watch with the meds. Every caregiver does. My wife does, everyday because she knows I make mistakes...
Wednesday, July 15, 2015
DNR's and ID's necklaces and bracelets. What is the difference?
While ID tags, or bracelets can identify that the wearer is a DNR patient, EMS or any hospital workers, including the doctors have to see a DNR signed by the patients doctor.
As Keith Luce was saying, what these do is identify perhaps that the patient is a DNR, but it will not and cannot prevent EMS from doing life saving techniques which will include CPR, without a signed DNR.
And as far as a tattoo, trust me, EMS don't go by anything tattooed on anyone. In reality, EMS is trained to save lives. They will do a primary and a secondary assessment, but in a trauma situation, or medical emergency they will not go by any tattoos or jewelry that they find.
These ID's would be for medical emergencies, and they work well for what they are for. If you have diabetes, dementia, allergies, things like that they are very useful.
But, once again, it must have the persons name on the ID, and EMS must confirm that the person is who the ID says they are. They do this by identification. Which again, I worked EMS for close to 25 years and never once did I get in anyone's purse or wallet to see who they are.
It just doesn't matter in a medical emergency. The DNR will come into effect when the patient reaches the hospital in most cases. Unless like I said, there is a signed and dated DNR at the house that the family can provide.
Many, many times I have started life saving techniques because claims of a DNR were given by the family. By law, you have to see the DNR order and it must be signed and dated by the patients doctor.
A family member cannot just tell you their loved one is a DNR patient. I used to tell people in these situations to have three copies of the DNR done.
One for the front of the refrigerator, one for the head of the bed, and one for safe keeping. In the midst of a medical emergency the only one there thinking clearly is usually EMS.
The rest of what is going on is usually pure chaos. Family members are most likely in shock. You have to be able to figure out what is probably true, when it comes to the information you are given, and what is being said in the panic of the situation.
DNR's are the way to go for many people. We just need to understand that like in Ohio, there is more than one DNR. We have the usual DNR, then we have what is call DNRCC....it's the same as a DNR, but with "comfort care" added. Meaning everything can and will be done for the patient, up to and until their heart actually stops.
No life saving techniques, such as CPR, but things like fluids via IV's, and oxygen can be used for comfort care.
Google DNR and your State. Educate yourself about DNR's. Leeanne Chames and I have talked many times about having a Memory People Talks™ about this subject, DNR's, but they can be so confusing, and some people who think they know about these simply do not.
It is so important that I don't want to tackle it over the internet. This subject has to be talked about with the patients doctor. Not someone who thinks they know about DNR's.
They are great, if this is what the patient wants. The most important thing to me about DNR's is that the patient agrees with them. In other words that this has been discussed while they are of sound mind and body.
Not in the final stages, as most family members wait to do. Claiming this is want the patient would have wanted, when they never took the time to talk to them about it...
Friday, July 10, 2015
What happens when someone wanders? There are several things that happen, and they are like a chain reaction type thing.
First and foremost, there is panic. Sheer panic. You know the panic you have felt when one of your children are out of your line of sight for just a minute in any public.
That feeling you get in the pit of your stomach. All of us have witnessed this, but when you realize your loved one has indeed wandered off, it is too late.
The unthinkable has just happened. This is one of these things that when it happens to a family, they can never believe it happened to them.
"Dad never even attempted to wander in his entire life"....well, things have changed with Dad, and now he has once, and most likely will again.
The first mistake people make when someone wanders is looking for them. What you say? Of course I am going to look for my loved one. Are you insane?
The very first thing you need to if you even suspect your loved one has wandered is call 911.
This is an emergency. And every second you waste looking for them yourself is precious seconds that matter. Get ahold of law enforcement.
They are privy to many more resources than you, maybe another family member, and a handful of neighbors have.
Then stay put. Chances are, the person who has wandered, won't return on their own. They are most likely confused, and probably lost. But, when found it is important that the officer have somewhere to take the person found.
If you are out scouring the countryside, this will not be able to be done. I have conducted training seminars on wandering and I am here to tell you once that person is found, and it is usually by the police, but once they are found you need to be there. If you are not at home, then you need to go to where the police have found them.
I recommend this more than having them bring the person to you. The faster they see you, the better for everyone.
Trust me when I say, the police have more resources than you when it comes to searching, but they do not have the training to be able to deal with a frightened, panic stricken, confused, agitated, irate, dementia patient.
If you think they do, you are wrong. We think they would be, but trust me on this, they on a whole are not equipped to handle what they have found. This is not your average runaway.
This person will be in a state that the officer most likely has never, ever encountered. Thinking they know what to do is what we call a false sense of security. We all want to think that everyone is trained in what ever crisis your loved one is in. Wandering is not at the top of the list in law enforcement. It just isn't.
Now, I am in no way knocking what are courageous police officers or EMS do on a daily basis. But, this is not routine. Far from it. If they had any training on this it most likely has been years ago, and there most likely isn't any ongoing training to deal with wandering dementia patients.
There just isn't. And that's the truth. I have been there, done that. If you find an agency of law enforcement that actively train on wandering dementia patients it would be a first.
So...back to my original thought. The very first thing to do is call 911. Hopefully you have taken our advice here on Mp and take a daily picture of your loved one in case something like this happens.
I can tell you when someone is missing, the family has a hard time describing what they look like, let alone what they had on.
Take a picture. We all have cell phones. Use them. And call 911. If by chance they are just in the basement or you see them in the backyard, just call back and say you have located them.
These agencies get paid to do what they do, and that includes looking for wandering dementia patients, or anybody that is missing for that matter.
Make sure you tell the officers what your loved one likes to be called. If his name is Robert, but he goes by Bob, tell them. If her name is Mary, but everyone calls her Granny...tell them.
The one thing a dementia patient does not want to hear is Sir or Mam coming from a complete stranger in uniform. They want to be politically correct, but that is not the time.
If your loved one doesn't wander, that means they haven't yet. There is always that chance. Just because they haven't doesn't mean they won't.
And if they have, that doesn't mean they won't again. And this wandering thing can occur anywhere in a split second. In a grocery store, a bank, a mall, church, a facility, and yes, even from home.
Be alert. Be vigilant. No one likes our elderly or dementia patients to be compared to children, but you lose one and they indeed have that effect.
It is like I said as if one of your children is missing. The time to panic is after you call 911. They will ask where they might be, because they don't understand dementia.
There is no place they might be. Even if they had a certain place in mind they were going to, they would never get there.
I once found a 86 year old gentleman who had just drove right through huge entrance gates to a luxury golf course. He was at the clubhouse, in his vehicle going round, and round, and round.
I had to get the vehicle stopped, and you can imagine what kind of state he was in. He had was from a town three hours away but had been missing for five hours.
It's impossible to know where he had been. I contacted an emergency number he had in his wallet, and the family were on their way. But that was at least a three hour drive.
So I had the daughter tell me everything she could about her Dad. What he liked, what he used to do, what he liked to be called, I also wanted in detail about his wife, and other family members.
I had to talk to this gentleman as if I had known him for years. It all ended well, but could have easily been a disaster. And I am sure to this day, that what took place here would not be considered a success to the family who had to live the nightmare of Dad wandering off, in his car, no less.
Dementia patients will drive away. You never know when. You never know why. Most people think of wandering as if they just wandered off. They can, but they can also "wander off" hundreds of miles away.
Driving is sometimes one of the last things a dementia patient loses. The ability to drive. And for whatever reason the family hasn't done anything to try to stop this.
They don't want to be the bad guy and take Dad's last thing he can do away. The taking of ones drivers license is a topic for another day, just know that they can and do drive hundreds of miles, in no particular pattern.
What law enforcement does it take the time they have been missing, and if it involves a vehicle, they multiply the number of minutes or hours they have been gone by 60 miles an hour.
Then they will inform all the other law enforcement agencies in that circle that they have made...Three hours, would include a circumference of 180 miles from their last known location. Which sometimes isn't known either.
They have to assume that your loved one is on the highway, not just joy riding around town.
Wednesday, July 8, 2015
Feelings. We all have them. Anxious. Sad. Worried. Happy. Hurt. Loneliness.
Even with a diagnosis of dementia the person still has feelings. The thing is with a diagnosis of dementia these feelings are most often intensified.
Take someone who is leery about the dark. That same person with dementia wouldn't be leery, they would be terrified.
Or someone who's feelings are hurt, that same someones feelings can and are hurt when they have dementia. Only it is more intense.
Everything is worse with this diagnosis. Because the patient no longer has the ability to deal with emotions or feelings. They have them, you can be sure but they have a hard time coping with feelings and showing their feelings to others.
To many times what the patient is doing, or saying is wrote off because "they have dementia".
The one thing this disease does is intensifies everything. So when they tell you or show some sort of emotion or outward feelings, chances are whatever it is that is bothering them is much worse than you think.
I think we often say, "They have dementia and that is why they are feeling like they do". Which is true. But those feelings of sadness, loneliness, fear, or anxiety are very real to the person with dementia.
If your loved one says something that is completely out of character for them, pay attention. They could very well be showing you their feelings the best way they know how.
Don't disgard something they say or are doing as "it's the disease." Of course it is the disease, but these people have feelings just like everyone else.
I can have my feelings hurt, just like anyone. I can say things that to me are very important, trying my best to tell you what I need you to know, but sometimes am not being heard because of my diagnosis.
When a patient talks of hurting themselves, or not wanting to live anymore, these feelings are real. It's caused by depression, a very real symptom of dementia.
Take what they are saying very seriously. Don't discount it if they are talking about hurting themselves, or they say they just don't want to live anymore.
There have been more cases than you would ever believe where the patient has hurt a family member, or worse and then perhaps did something to themselves.
We have feelings. And they are real. More real than they were before our diagnosis. We sometimes have a difficult time explaining them. But it is your job as a caregiver to read between the lines.
What are they really saying? Is this difficult? Of course it is. I have said many times caregiving is not rocket science, it's much harder than that.
Listen to your loved one. They have feelings. One's feelings don't fade as the memory worsens. Be considerate, be compassionate. It's the right thing to do.
If you think there is something wrong, or if they are contemplating hurting themselves or someone around them, take this seriously. This is not a stage patients to through, wanting to do harm to themselves or others.
Simply because your loved one can no longer communicate with you, they still have feelings. Their feelings of anxiety, depression, and fear are only worse with the disease.
Thursday, July 2, 2015
The 4th is soon to be upon us. All the festivities are no doubt planned. Keep in mind, what your loved one liked, may not be what they like now.
Little kids running around the house. All the commotion just a cookout creates. The noise can set them off way before the fireworks.
Try to do things like you always do. If you are having family over, it might be well served to eat with Dad or Mom in the house where they always eat for example.
Having them sit outside seems innocent enough, but just by doing that it can take them out of their comfort zone. I am not saying this will, I am saying it could.
Any more than three people to me is a crowd. I can deal with it outside up to a point. But even then, it sometimes is just too much.
It causes stress. It shouldn't, but it does. Just the littlest thing out of ones routine can cause stress for the patient.
Eating off a paper plate for example. No one would think a thing about fixing their meal and giving it to them on a paper plate and holder on the 4th of July, but that alone may cause them not to even eat what you know is on their plate and love.
Same goes for silverware. All to many times in nursing homes there is a change in silverwares for an occasion. It doesn't work for dementia patients, but many facilities don't bother to think about this.
Most don't have the staff or the time to see that your loved one is using their usual utensils. But it is a big deal to patients.
We have two kinds of forks. Why? I haven't a clue. Must have been a sale somewhere along the line and we bought more silverware.
I have to use what I use everyday. Phyllis June knows I can't eat with the others, and it's not a problem, not near the problem it would be if I had to use the other kind of forks.
Have fun this holiday. But be mindful of your loved one. Even if you are visiting them at a facility, if more people than usual decide to go to see Grandpa, that too can cause them confusion and stress.
Try to keep everything as it always is. It's hard, I know, but the stress you are saving for your loved one always trickles down to the caregiver.
If I am having a bad day, It tends to show. No matter why, no matter when. You can't hide bad days. No sense in taking a chance on creating one...
For those who always ask "how does he articulate what he wants to say so well"...
The last two days have been those days we all dread. For whatever reason I haven't been able to focus on anything.
We often refer to days like these as being in a fog of sorts. I never understood that analogy, because I can see fine.
Putting together my thoughts is what the problem is. I had to increase the one medication I take for obvious reasons.
This evening has been better. But there is still this uncertainty about everything. I have to listen to everything that is said, even then I really don't get what is being talked about.
I think for me I am mentally drained at times like this. My brain is saying, "Okay, we've been working on things long enough now, I am going to shut down a day or two and get some rest."
The problem with that, life goes on. While I am on sabbatical of sorts life goes on. Nothing changes because I can't figure out what is going on.
When the phone rings on days like this, it's like a knife going through me. I don't answer it of course. But just the ringing is enough to set me on edge.
I can actually get upset with the noise of the dogs toenails on the hardwood floors. It sounds like someone running their nails down a chalk board.
I take mediation to ease this, then I am so tired I can't stay awake. I have literally slept the last two days away. Most of them anyways. Which is better than being up, awake and not knowing what is going on.
If your loved one seems to be sleeping too much to you, their not. It doesn't hurt a thing to sleep. Chances are they will sleep at night also, but even they don't, they can't fight the feeling of being sleepy.
Least I can't. And the meds I take that is what they are designed to do. It's anxiety medication. Which I take twice a day, everyday, but days like this I have to increase the dose.
I lost two days here. And I can tell I am about to lose three. My hope is it stops at three. I have gone through as high as two weeks like this. Which in itself is draining.
Tomorrow will be better. I know it won't. But it doesn't hurt to say it, perhaps it will. The feeling of fear creeps in. Such a strange thing, being afraid. I used to be fearless. Now, anything and everything for whatever reason feels like a threat to me.
Senseless, but to a patient, it's real. It's real as rain...