Wednesday, February 24, 2016
First off, in my opinion, this topic should have been discussed a long time before placement is even an issue. When the patient can and will make what decisions they want for themselves.
The very week I was diagnosed we went to our attorneys office and changed our will, changed power of attorney of financial and medical.
And right after that, we talked about placement. Or rather I did. I understood what a toll this disease will be on my wife, and our family. The one thing I could to make this easier on everyone, especially Phyllis June, was to tell her my choices I want about placement.
Both of us being in EMS for over twenty five years, we have seen first hand situations where patients were kept at home that should not have been. Sometimes this is for financial reasons, sometimes over some promise made twenty years ago.
Whatever the case there almost always comes a time when no matter what the disease is be it dementia, cancer, paraplegic, whatever it is, in the end some families cannot care for their loved one properly.
This happens. It when it happens and the family realizes it and still does nothing is when the patient suffers. I have seen numerous cases where the patient is kept at home so the wife, kids, whoever can still get the checks in the mail.
It's crazy, but it happens. This is why I am all for talking about this placement thing long before it is ever even needed.
Too many times you will hear "I don't know what to do? I think placement is the only thing we can do? How do I go about placing my loved one? Who do I turn to?
First off, the subject of placement should have already been discussed with the patient, long before this is an issue. I cannot stress that enough. If you don't, you will have world war three with some family members, simply because everyone knows best.
If you have in the patients will their wishes to be placed, then the argument is over before it even starts.
Now, how do you go about this? Well first off, no one can just place their loved one. All of this must go through their primary physician. Only a doctor can evaluate and decide that someone is indeed needing 24hr round the clock care.
You can't just drive up to your local nursing facility that you like, take Mom in and announce that you are there for a room for Mom. It doesn't work that way.
Even if their doctor does agree and orders placement in a facility, that facility has requirements. One of which is who is paying for this and how.
Every state differs but there is criteria you must meet for placement financially. The facility is a business and they will want their money.
If the patient for instance owns any property like a house, land, a car, a boat, any property like that and they will be considered private pay until said property is sold.
In Ohio for example the patient cannot have any property or funds in their banking account that is over $1500. If they do, they are private pay. Like I said up to and until these assets are gone.
If for instance Dad has $8,000 in the bank, he will be on private pay until that amount is less than $1500. This is just the way it works in Ohio. The spouse however has to be allowed to stay in the home, even if its owed on or paid for.
But when the end comes, the house and property it sits on must be sold to pay back whatever assistance your loved one was one. Be in medicare, or whatever.
The facility wants their money, and will get if from the State, but the State will get their money in the end also. By forcing a sale of the house.
This all seems a little barbaric, but no facility is in business of giving out free room and board. If they were, they wouldn't be in business.
I have said many times this dementia thing is a billion dollar industry. If you notice, they are now building entire dementia facilities, instead of just having a dozen or so rooms for dementia patients.
The more rooms they have for dementia patients the more money they will make. So they now build entire dementia facilities.
The very best thing you can do is have a plan. Some think they take what money there is and hide it, move it to another account, whatever. Then apply for Gov't assistance.
Don't do this. There are people in the Gov.t who do nothing then look for things like this. They are called the IRS. And it is called fraud.
I wish we would have known this, but even if we would have it wouldn't have changed anything for us. We did put the house and everything else in Phyllis Junes name.
We have seven years to wait, up to seven years, that transition doesn't mean anything. In other words the IRS looks at that as moving money or property around to defraud the nursing home by getting Gov't assistance.
Take for instance Mom has $70,000 in savings, bonds, and IRA's. You just can't liquidate that money into your account or someone else's. There is what they call a money trail.
This money has to be show as spent, not just moved from Mom's account into the daughters or whoever. It sounds good and you would think you could do that.
If you do, and if she gets assistance, someone will pay in the end. These facilities keep track of things like money and who's paying what. And so does the IRS.
Just figure on Mom being private pay until her assets are gone. Then she can and will get assistance.
So, have a plan. Then have another. This thinking you can just pick out a nursing facility and drive up and drop Mom off isn't how it works.
Placement can take weeks. If for instance there just isn't any rooms where you want your loved one to be at the time. You can't arrange for a room in advance.
I hope this helps just one person who is on this journey. You may be told to contact an elder law attorney. That is fine. But that costs money. Many times you have services in your area like Job & Family Services that can help you with talking about placement and what to do. And these places are free.
An elder law attorney could cost you way over a thousand dollars for the same advice you can get at a Job & Family Services for free. So do your homework. And don't wait till its time for placement.
You can always plan and change your mind. There is never a downside to placing your loved one too soon. There are many downsides to waiting too long, and none of them are good.
© Rick Phelps 2016
Sunday, February 21, 2016
I have had a new product for about a week now and was wanting to share with you about what it does for me.
It's called the Amazon Echo. Before I tell you about it, let me tell you what it does for me. I can answer this with one question. What day is it?
What day is it? I ask Phyllis June this constantly, which you have probably heard me talk about before. This is just one of the things that I deal with, not knowing what day it is because of dementia.
So what you may ask? What do you have to do that is so pressing you need to know what day it is? The answer to this is I don't have anything pressing.
However, since we were just toddlers everything we do starts with knowing what day it is, or what time it is. Most don't realize this because knowing what day it is comes natural to everyone.
Not knowing isn't natural. I have trouble with what month it is as well, and a whole host of other things.
This is where this phenomenal little device comes in. Echo, or Alexia. Alexia is what Echo's "wake word is". It is the only word you need to know. Alexia.
You can change the "wake word" to either Echo, Amazon, or leave it as Alexia. What is a "wake word" you ask. It is the word you must use to "wake" the device. The Echo once turned on, listens to what is being said constantly. And it is listening for its "wake word" from you to answering anything you ask it.
"Alexia, what day is it?" "Alexia, what time is it?" Alexia, is it going to rain?" Alexia, how many teaspoons are in a cup?" Alexia, what time is Andy Griffith on tonight?" and on and on and on. "Alexia, what is my wife's phone number?" "Alexia, when is the next full moon?" "Alexia, how many days till Christmas?" "Alexia, what is 345 x 37?" "Alexia, who was the twenty seventh President of the United States?" "Alexia, what is the capitol of Bangladesh?" "Alexia how far is it to Walmart?" "Alexia, how far is to Denver, Colorado?" "Alexia, set a timer for ten minutes". Alexia, set an alarm for 7:00am everyday but Saturday."
I tell you that you can ask this device anything. It only needs wifi to operate, and it gets all the answers to your questions from there. And they are split second answers. And they are accurate. I have yet to trip this thing up.
"Alexia, remind me to take my medicine at 8:00am and 8:00pm everyday". Once you tell Alexia to do this, it will indeed remind you daily to take your medicine.
It can play any music you want. Any music you want. Again, this comes from the "cloud" that Amazon uses. Say your loved one loves some artist that you don't have any recordings of. No problem. What about reading a book for you? It can do this also.
"Alexia, play New York, New York, by Frank Sinatra" "Alexia, add paper towels to my shopping list." "Alexia, what is the weight of an elephant?" "Alexia, read the Bible." All you need to do for this thing to read any book to you, is to have this book on audio. Which I buy all my books like. Since I can no longer read. That alone makes this thing worth it's weight in gold to me.
To many, the Amazon Echo is a cool thing to have. Some what of a just another electronic gadget. But to a dementia patient it is much, much more than that.
It has afforded me something that I have lost. Memory. I can ask Alexia anything and I get the answer instantly. And I can ask it what day it is twenty times a day and I will still get the same correct answer.
I am adding a short video about this item below. Check it out then go to amazon.com and search for Amazon Echo. It has over thirty thousand reviews and all of them are positive.
The item sells for $179.00. And for what Amazon Echo does for me, it's priceless.
We are not in the business of promoting items here on Mp. I have said that over and over. And over the years I have been asked to promote certain things only because of our numbers here.
People see we have over 13,000 members and all they see is dollar signs. We are not about anyone coming to Mp and peddling their newest thing to make a buck off of anyone here.
But, this item is indeed a miracle for me. I am writing a letter to Amazon about what this thing can do and does for a dementia patient. In the hundreds of reviews I have read and videos I have watched, they never have mentioned using it for a dementia patient.
I would never steer you wrong. Like I said, this item isn't cheap. And it does not look like it. It weighs about three pounds and is very well built.
And to get it to work, you simply plug it in, ask it to "pair" with your phone, you have to have wifi, once you've done that, you are ready to go.
Here is the video...I hope you see the potential this thing has for your loved one. This obviously would not be something for someone in the later stages that has trouble speaking.
But if you have a loved one who is constantly asking anything, be it what day is it or whatever, this is the ticket. All they need to remember is the "wake word"....Alexia, Amazon, or Echo. And then ask away or have it play any song under the sun. It is that good.
© Rick Phelps 2016
Friday, February 19, 2016
If I'm in our local store and hand the clerk $20 for a gallon of milk, all they would have to do is say "have a good day" and I would be on my way.
Not realizing I have change back. That is just a small example of how I depend on others around me.
Your loved one does too. Whether they tell you about it, or whether you even notice it, they do.
You can't help but depend on people and things. My iPhone for example. Most peoples cell phone is hardly out of their hands during the day.
Checking emails, sending texts., snap chat....whatever that even is. You can ask Leeanne Chames our cells are our lifeline when it comes to Mp.
We are a 24hr. 7 day a week operation here. One or both of us have to be available at all times. For things that are way too technical to go into here.
But there are important things we need to be aware of. We have things on here that are literally life and death issues. Our phones, when not at home, are our lifeline to Mp.
But having dementia, I tried to think of what all I am dependent on. The list is endless. I have heard the stories from some dementia patients who think or say they don't need anyone or anything.
This of course is a form of denial. As humans, some of us take it as a sign of weakness to show that you need someone or something.
All of that goes out the window with dementia. If you don't depend on someone, you still do. In other words, even those in the deepest denial depend on someone to do countless things for them day in and day out.
It goes with the disease. I have always been an independent thinker. I still can do that to some extent. Some of my ideas or take on things are certainly not everyones, and they shouldn't be.
In the beginning I was one of the strongest proponents of the Alzheimer Association. Over time, and years, this has changed. I found out they to are dependent.
Dependent on your money. Donations. They say for research, yet we never hear about the outcomes of any researches. Never hear just where all this money goes.
I hate it when anyone takes advantage of anyone else. Some of the organizations we rely on, are indeed dependent on you for one thing and one thing only. Your money. My money.
I have long said that a lot of these donations go for administrative purposes. As in payroll, perks, exotic vacations and luxury hotels for meetings.
What I want is simple. What I depend on is even more simpler. I depend on the people who say they have our best interests in mind, to do just that.
Sadly most don't. This world of dementia is a billion dollar industry and everyone wants a piece of the pie. You would be shocked at some of the per diems that some of the speakers at these conferences are getting.
Tens of thousands of dollars. For maybe a forty five minute speech on dementia. Something they read from. A teleprompter, or notes in front of them.
I have done dozens of speaking engagements myself. Difference is only once was I ever paid and that was from a Medicine of College talk that I did two consecutive days.
When you do what I do, share your story and then you somehow find yourself getting or demanding speaking engagement fees in the tens of thousands of dollars, who in their right mind think that the person you are listening to, depending on, has your best interest?
They don't. Same way with some of these seminars you hear about. These retreats some will call them. Some of these things cost companies thousands of dollars to send their employees.
And almost all of the speakers there depend on the same thing. They depend on power points, and notes. Not a one talks from experience, or from the heart for that matter.
What I am trying to say here is that not everyone who you depend on has your best interest. Your family of course does, or should. But even then some family members the closer the end comes all they see is dollar signs.
When you are a dementia patient you do depend on so many things. And even those who you depend on to give you good solid advice, in the end don't.
They tell you what you want to hear, what they think you should hear. Every celebrity who has ever had dementia is a perfect example. For whatever reason we depend on these people for advice.
We see them and think, they can do this and so can I. Problem is again what you are depending on is not what is happening. There isn't a celebrity dealing with dementia that deals with it like you or I do.
There just isn't. They don't live payday to payday, or Gov't check, to Gov. check. They don't worry about affording medications, or being able to afford placement.
They don't know the heartaches we know daily. They will however experience grief. We all experience that. The next time someone is in a position to give you good information about dementia, try to remember, are they telling me what I need to hear, or what they want me to hear?
You will only get what you need to hear on MP. We don't sugar coat anything. We don't paint some pie in the sky idea that this will be okay. Nothing about dementia is okay and never will be okay.
And trust me, you can depend on that...
© Rick Phelps 2016
Saturday, February 13, 2016
What Dementia Patient Go Through
Many times you will see articles or even exercises in what it is like to have Alzheimers. People in the dementia field have been trying to explain this phenomenon for ever.
And those who do not have dementia always want to know, "What is my loved gong through? What are they experiencing? What can I do to help?"
I have always found that less is more. Or keep it simple. If you go into the depths of Alzheimers or any dementia for that matter and try to explain it, you will most likely in the end say or do something that simply doesn't happen or is dramatized in some way.
I often refer to the "Virtual Dementia Tour" which has been around for a few years now. Some woman, with good intent I'm sure came up with this scenario. In which people put on smudged glasses, headphones that are blaring music, oven mitts, and marbles in their shoes, to represent what it is like to have dementia.
Every dementia patient I have talked to about this, every one, including me has said this "tour" is nothing like having dementia. It's just not.
So in the interest of keeping it simple a couple of years ago I came up with a scenario of my own, that anyone can easily do from the comforts of their own home and see themselves some of what dementia patients go through.
Here is that little test:
Pick up a book. Any book. Can be a magazine, or some book you are currently reading. What book it is doesn't matter. Turn to page 19. Can be any page, but I picked 19 just because. Now, read every third word, in every other paragraph.
Now after reading every other word in every other paragraph, wait two minutes and explain to someone what you just read.
Why would anyone do this? If you do this simple exercise, it will show you how a dementia patient deals with reading, and comprehending anything.
In a group of people, two or more, I hear about every third word. When reading a book, after the third paragraph I have no idea what the first paragraph was about. In my daily living, I live in a world of unknown.
So, pick up a book. And read every third word for a page or two. Then try to tell someone what you just read. That is what we deal with.
As simple as this little exercise is, in my opinion it indeed shows you what a dementia patient deals with trying to understand what is going on around them at any given time.
This doesn't just happen on bad days. This confusion is there 24/7. Always. There are no breaks, there are no times where you are thinking clearly.
You have a disease of the brain, and portions of your brain has already been damaged by this disease. Nothing nor no one is going to be able to "fix" this or make you understand something better.
You just can't. That is what it's like to live with dementia. Even with this explanation, this only deals with a small part of dementia, memory loss.
There is much more that we deal with as patients. Stress, anxiety, fear, agitation, loneliness, the feeling of despair, the feeling on not being useful anymore, and on and on, and on.
It is indeed a disease of memory loss. But it is also much more than that.
© Rick Phelps 2016
Friday, February 12, 2016
This is heard over and over by family members, caregivers, and even patients.They simply can't believe their loved one is doing what they are doing, saying what they are saying.
This could be repeating themselves constantly, or it could be shadowing, it could be flipping the channels on the tv constantly, could be many different things.
What happens here is family members, or caregivers try to correct or stop what ever the patient is doing.
Here's something you won't hear anywhere else, yet it is absolutely true. You can't stop these annoying traits that patients pick up. You can try, but it won't work.
We are wired as human beings to tell someone who is doing something annoying to stop. This just isn't how it works with dementia. If it was that easy, we wouldn't have the issues that you encounter with dementia patients. It isn't that easy. Period.
You will have good intensions of trying to get your loved one from constantly following you from room to room, being by your side every waking second. This is called "shadowing".
The patient does this because they have a fear of being alone.How do I know this? Because I have done this on many occasions. Once this starts, the only thing that can change this, is the patient.
You will read suggestions on how to stop "shadowing", but that's all they are, suggestions. What you are essentially doing is trying to get a person with a brain disease to realize what they are doing has to stop.
In short, good luck with that. Whatever it is the patient is doing, they are doing this unknowingly. In other words its like an involuntary thing.
They don't set out in the morning having a plan to follow you around all day. That simply doesn't happen. To do this they would have to have the ability to plan and execute this and they don't.
The very best advice I can offer caregivers when these things happen is to deal with it. Sounds simple. It isn't of course. But trying to change these things that the patient is doing is just not going to happen.
Say for the sake of argument something you did indeed stopped them from shadowing. My guess it would only be temporary and short lived at best.
The only thing that will stop these quirks is the patient themselves for whatever reason stop doing them.
Your loved one for example is not going to follow you around till the day they die. In time this will stop. If for no other reason then they are no longer capable of walking.
Or there will come a time that they won't repeat anything. What may happen is they lose all communications skills. The will simply become mute.
For example, I ask Phyllis June about five times every morning, "what day is this"? She tells me, and five or ten minutes later I ask again. I don't ask again because I forgot what day it is, I ask again because I forgot I even asked her in the first place.
And instead of her doing this long drawn out thing of explaining that she just told me this ten minutes ago, or she would somehow try to help me remember what day it is, she simply tells me what day it is. Knowing I am going to ask again in just a few minutes.
You see she has learned over a period of time it does absolutely no good to try to figure out how to get me to remember what day it is. None. I don't have the ability to remember that because I have no short term memory.
Do this with your loved one. Instead of wasting your time and theirs on trying to figure out how to help them remember something, just give them an answer to their question.
You see we try to micro manage what is going on here. We think, what is it I can do to help your loved one remember? In the grand scheme of things family members or caregivers lose site of the truth. You can't help patients remember.
It is much simpler, and will keep your stress level down some. Just realizing what is happening you cannot fix, or change.
Another thing to keep in mind is, as bad as some of these habits are, there can be, and probably will be worse ones coming.
If they would stop following you or shadowing you for instance, they may pick up another trait that is far worse in your mind.
The bottom line her is don't be surprised at what your loved one is doing. And you can try to help them with it, but it will most likely be useless.
You will just become more frustrated than you are after telling them time and time again to stop something or whatever it is.
Just like with everything when it comes to dementia, we all want to "fix" whatever it is our loved one is going through. The problem is that is a noble thing to try to do, it simply isn't that easy.
© Rick Phelps 2016
Tuesday, February 9, 2016
And I am very humbled by it. Very. But I want to explain how this got started. Why I started this site, why it works, and why what we do is the very best thing that is available right now.
I have always been about helping others. My career in law enforcement, EMS, and State Investigator for nursing facilities. All of these career choices were not random.
I worked very hard to be a good as I possibly could in ever one of them. Helping people is something that I have always been drawn to since I was very young.
Help the down and out, help those who they system has overlooked for whatever reason. Everyday in LE and EMS I thought to myself, today I will make a difference in someones life.
This was very rewarding to me. My wife is cut from the same cloth. She has been doing EMS for over thirty years now. And loves it. You have to.
Right after my diagnosis, I kept my thoughts to myself for about a week. I was relieved that I had finally gotten a diagnosis, even as devastating as it was.
I then sat Phyllis June down and explained to her what I wanted to do. I found out right away there were no answers to the questions I had. The doctors said the canned speech.
"You have a terminal progressive disease to which there is no cure and nothing to slow the progress at this time. Here is the meds you need to take, come back and see me in six months."
This didn't cut if for me. Matter of fact it was unacceptable. Don't tell me there are no answers. I was determined to find them. On my own.
After many months or reading about dementia on the typical websites and internet in general I found out that there are more answers then one could ever think.
The problem was, almost every one I found was written by or suggested by someone who studied about dementia, or was just trying to make a buck off of this disease. Selling their concoctions, there snake oil if you will. There flash in a pan ideas.
I could not find one site where the information that was given, was indeed given by a dementia patient. Not one. And I looked, believe me.
So, in my mind this had to change. Who could do this, I thought? So, I sat Phyllis June down and told her I found someone who could blow the lid of this dementia debacle, tell what it is really like to deal with it, and dispel all the rumors.
She looked intently at me, listen to my rant and finally said, "good, who is is and where are they at?"
I said, sitting right here at the table with you. I want to take this thing we are living and hit the road. Tell my story, the story is not only mine, but it is indeed every dementia patients story. The problem is most won't or can't talk about it.
This has to change. So I pitched the idea of Memory People to her. Then I hit her with the book idea. This I told her this would change everything, but most of all our private lives would no longer be private. I was very important to me that she understood this.
The journey we have been on since has helped us just as much if not more that anyone else. I have to admit it started out slow. But it did catch on.
What you ask? The genius thing I had stumbled upon which no one that I could find had ever used, including and not limited to the doctors.
We talk to one another. We use our real names, not some nickname, we talk about the hardest things. We don't and won't sugar coat anything, and we will never lie or tell someone something just because that is what they want to hear.
Along this journey I have done things I would have never thought of before. I wrote a book, and I can't read any more than three paragraphs and know what I read in the first paragraph.
I co-wrote a song, "While I Still Can..." that was recorded in Nashville, Tenn. by my life long friend Dan Mitchell, record producer and recording studio owner of one of the top studios in Nashville.
I hit the speaking engagement tour. Doing dozens of speaking engagements all over the United States.
This indeed has changed our lives. But it has changed our lives for the better. We have met life long friends we would have never met if not for dementia. We have had the opportunity to help tens of thousands of people by just talking.
Telling them the truth. Not what you think they may want to hear. What I do anyone can do and many others in our group do as patients.
We learn from one another. We talk about things that you cannot share with your own family. We talk about things that others would never even mention.
We tell people we are not about cures here on Mp. What we are interested in is getting you through today, this hour, this minute. And then we get up and do it all over again.
The fact is they are no closer today then they were twenty years ago when it comes to finding a cure. And that's alright. These things take time, research, money, and trillions of it.
I have said many times not one Walk to End Alzheimers is ever going to cure anything. In my opinion doing these walks you are simply making payroll for the money making machine called the Alzheimer Association.
Chapters of the Alzheimer Association all across America are dropping like flies. Many don't know or won't admit this. The latest debacle is the AA wants to take all of the local chapters funds they raise, take them, and then dole out the money, their money, back to them as they see fit.
Obviously this is never going to work. What is going on here is the great money making machine is hurting for funds. Funds that make payroll, funds that keep the lights on.
It's a sham. Back when I first stated this journey, I thought the AA was the best thing since sliced bread. They are not. Don't take my word for it, research some chapters and how they are actually losing the money they raise and have to send it to the home office if you will.
The Alzheimer Association has lost its way. The CEO makes just shy of one million dollars a year in salary alone. It's like legalized theft.
We do more here everyday by accident than the AA does on purpose. Yet we get posts all the time about someone donating to them. It's absurd, but it is your money and I would never tell anyone who to donate to.
It's just mind boggling to me that you have a site right here that is open 24hrs a day, seven days a week, we take no time off. We don't have a certain month we designate for dementia awareness we do it everyday.
For those who question what I am saying, do this. Post anything at anytime on Mp. Ask whatever is on your mind. I guarantee you within two minutes you will start to receive support. Two minutes.
Now, take that same question and call the Alzheimer Association's 800 number. Let me know what they said. I already know. But the difference in the reply should astound you.
Like I said, Im not here to demean any organization. But you have to realize what we have here. It's not about Rick Phelps. It wasn't in the beginning, and it isn't now.
It's about you. Our members. I am humbled by the thank you's I get here for the posts that I do. I really am. But in my mind, it is just the right thing to do.
I wish other organizations would to what we do. Talk to one another. It woks. We are proof of that.
What would you pay for the support you have gotten here? Can you even put a price on what we do?
I think not. I truly believe that Mp is priceless. I once asked someone what it is worth to them. And the answer were the same. You can't put a price on salvation.
Mp will be here long after I am gone. And Mp will be here even when a cure comes along. Because no matter a cure or not, we will always have people suffering from dementia.
We will do what we do. Changing lives, one person at a time. The way it should be, together.
© Rick Phelps 2016
Monday, February 8, 2016
So, what is the answer here? Do you as a Director of a facility allow this, and if so, how far does "this" go?
Some will say it's fine for these patients to have feelings for other patients. They have forgotten they are married, and it is very natural to have these feelings.
This could start with something as simple as holding hands. Or it could escalate right off the bat to a full blown rape.
I myself don't agree with allowing patients to cohabitant with other patients. Even if it just holding hands. This can easily escalate. And then what?
Many will say it doesn't hurt a thing and they are both consenting adults. I say hooey. First of all think of what you are dealing with here. The mere fact they are in a dementia ward tells you that they have long lost the ability to make rational decisions.
Allowing such behavior opens up all kinds of liability on the facilities if you ask me. Everyone wants their loved ones to have friends, companions, whatever you want to call it.
What this is about goes or has the potential to go way beyond friends. What we have to keep in mind is these people have lost the ability to make rational decisions.
And yes, the urges are still there. But you can't act on these urges just because you want to, or it's no excuse in the eyes of the law that this occurred because the patient has dementia.
If something as casual as holding hands is allowed and somehow this takes a turn to other things, then the facility is liable for allowing this to begin with.
Now, if the two patients are married to each other, then thats a different story. The issue here is and always is consent. Dementia patients in the stage that these people are in do not have the ability to give consent of this nature.
This is something that is rarely discussed, that is why I bring it up. I was an investigator for the State of Ohio for a six county area which included many nursing facilities.
I know a little about this topic. I had many cases of sexual abuse that occurred in nursing facilities. Anything from some casual contact, to full blown rape.
It happens. I am not posting this for you to get all worried about something that may never happen. The issue here is these situations do happen. I was astounded with the number of sexual attacks I had to investigate.
This is one of those topics that is never really brought up. And should be.
The urges like I said are there. Not in all patients, but all it takes is one. This is what I mean when I tell you that you will always be their caregiver, no matter if they are placed or not.
© Rick Phelps 2016
Sunday, February 7, 2016
This is one of those things where you can never call too early. I mean, they, hospice will come out and talk to a family anytime and advise if it is indeed time.
The thing is, hospice is put into action only by the patients physician. He has to be the one that agrees hospice is indeed implemented.
One cannot just call hospice and get on their program. The reason for this is all kinds of things change. The most important is the change in the patients medication.
For example, they will be taken off of high blood pressure medication. They will be taken off of any and all meds that are life sustaining. And this could include and most likely would some of the meds your loved one is on for dementia.
When it comes to hospice and dementia, one has to think about this very carefully. You see with dementia, you can easily see days or even weeks that looks as though there is no recovering from what they are going through. Then sure enough, they do bounce back, somewhat.
Hospice deals with a lot more then end of life issues. But end of life issues is what they are known for. And what they do, they are the very best at.
Just know this, many people are put on hospice and get better. They then indeed are taken off of hospice. Sometimes they are put on their for failure to thrive. Something that can change.
They of course are still terminal. That is what hospice deals with, terminal patients. People who have six months or less to live. This could change and they are re-evaluated from time to time by hospice and their doctor.
All meds are changed, but not without express written consent by the patients doctor. They have complete control of what the patient is given. It's just that if the family, or whoever demands that their loved one is kept on whatever drug that indeed is needed to keep this person alive, hospice will not get involved.
They are there for those who are indeed dying. Just remember when dealing with dementia, one of the first things they will likely do is take the patient off of all of their meds and go from there.
I want hospice called in, when the time is right. When I am comatose and there is no chance of me coming back from this and having any kind of life.
Not because I am sitting in a chair in a facility and just seem to have given up. This disease presents itself to everyone that the patient indeed may have giver up.
I never give up. It's not in my DNA. So, the last thing I want is to be denied something that will keep me alive. Until the time has come. And it is up to my wife, and no one else to make that call.
Our daughter of course should God forbid Phyllis June not be here.
© Rick Phelps 2016
Wednesday, February 3, 2016
I am not posting this as a woe is me thing. I want to try to explain what happens at night, and why there is nothing that can be done.
Night terrors. I don't call them nightmares, because they are not that. What I experience is terror. Nothing less. They are not bad dreams. What I see cannot be classified in any way as a dream.
I have long suffered with sleepless nights. And have coupled this with this horrendous night terrors.
One of the lyrics in the song While I Still Can...tells of these. "And when I fall to sleep, the darkness and the demons steal my dreams, of how things were and how they still could be in a sweeter place".
I still thank God can explain these night terrors. I think about the patients who can't. Who have these and can't sleep. We talk about patents wandering aimlessly through the night but what if they are not wandering aimlessly.
What if they are trying to get away from what I go through as well. I tell you, the things I see while sleeping are unimaginable. I don't know how these things can even be in my mind.
Most times, about 90% of the time I cannot recall these night terrors. What I seen, what it was about, etc. But sometimes I do. I am awakened by my wife, usually because I have been kicking her, hitting her, and at times choking her during these night terrors.
I think sometimes it has to do with some of the things I have seen over the years in EMS. What some people do to other human beings. At the time you deal with it and do what is necessary. When on a bad call for instance you do what is necessary and go on to the next call which is can be worse than the one you just seen.
This is what keeps people like my wife and I in EMS. The unknown. The no one call ever being the same. The idea of helping someone and in many cases saving that persons life. It is a feeling like no other.
But some these images are burned into your memory. I can still see the first baby I preformed CPR on. I can see the many accidents I was on, some you only knew how many victims because of the different clothing you could see. I can see horrific tragedies that happened just because of alcohol or someone using poor judgment.
Horrific suicides. Young and old. Until you cut a thirteen year old down from a barn rafter after hanging himself, you never really know the impact of suicide. Or a sixteen year old Amish boy swimming in a public lake for the first time and drowning. His parents showing up wanting to see him, when I know with all my heart they do not want to see this young man. That memory will and has been burned into their memory forever.
All these things I have seen and much, much more have an effect on what I go through at night I think. But you don't have to be in EMS or Law Enforcement to witness horrible things.
The thing is your mind can make up these things. And that is what happens. Many patients have hallucinations. I thankfully don't have them yet. But my hallucinations come at night.
And I think many other patients suffer from this as well. They simply can't communicate it to anyone. They have long lost the ability to explain anything.
Over the years I have heard it all as to what to try to do to help with these night terrors. People who do this have good intentions. What they don't understand is you can't do anything to stop these.
We have tried everything. From drugs to all the common things one would do to try to be able to get more sleep. The issue here is it is not a lack of sleep thing, its an issue with my brain.
For whatever reason my brain does not allow me to sleep as we are accustomed to. And we all know, or should all know that there isn't a doctor anywhere who can help with the symptoms of this disease.
There are things that can lesson these symptoms. Like anxiety, stress, fear, etc. But there is not a pill made to stop these night terrors. To be able to do this, the drug would have to be able to control the brain. And that hasn't been developed yet.
Dementia patients deal with many things. Couple that with the lack of sleep and you become mentally drained. And you always have this drained feeling because you are always dealing with the symptoms of dementia. They never stop. Never.
What I want people to know that is when your loved one gets up in the middle of the night, it may be much more than just being restless, or just wandering. It may very well be they are trying to get away from something terrible. Something that came to them in their sleep.
I have said for years when a patient wanders outside the home or facility it is because for whatever reason where they are at, they feel threatened or scared. And all they want to do is to get somewhere safe.
Thus, they wander. They may have in their mind they are going home. Somewhere safe. But the home they are thinking of doesn't exist anymore. It could be their childhood home. As patients tend to refer back to their earliest memories.
But they are wanting to get away from something that is scaring them. It could be night terrors. It could be hallucinations.It could be anything. But these are very real to patients. They are as I say "real as rain".
So don't just dismiss it when your loved one is up all hours of the night as they are doing this to aggravate you. What they are doing, they have no control over.
I am in the mid stages of this disease. And I can tell you that I cannot control what happens. If I could, I certainly would. At any cost...
© Rick Phelps 2016.
Tuesday, February 2, 2016
Dignity was the word that stuck out to me when I read this post. The member said her loved one had long forgot about worrying about her dignity, and they also stated that they would spare us the details of what actually happened.
This has long been an issue for me and many others here on Mp. I don't address it much, first of all I don't want anyone to think I am pointing out what they may have posted recently.
That is never my intention. The fact is we have many pictures posted here on Mp that deal with patients in what I would certainly consider uncompromising positions.
We have had pictures of loved ones literally on their death bed and occasionally we get a picture of someone loved one who is deceased.
In the world we live it, with all the camera phones it is very easy to take photos that are important to you as a family. Some feel that toward the end of life, or even when the patient has passed it is appropriate to take a photo.
I have seen this many times in funeral homes where family members take photos of their loved one in the casket. I don't care to see this, but many families do this.
We have only started allowing pictures on Mp in the last year or so. The reason being we have many other spin off sites just for this, the posting of pictures and many other topics not dementia related.
I understand completely why some of these pictures are posted. But I look at in a very different way. When I started Mp, it had one purpose and still does. And that was too offer a service if you will.
That service being support and awareness. And we have done that better than anyone. What I didn't want was a site where personal pictures are posted about family gatherings, or baby photos, or pictures of ones pets.
All of these are fine. In the proper context. And in this context, we have people struggling everyday, all day long, just to get through and make it to the next day. In other words this is not the context in which to post some of these pictures.
When we have people who join, the last thing I want them to see here is a photo of someone lying on their death bed, or families having fun, or things like that.
It's not that these photos are not uplifting, some are. But when you come to this page as new member, we have one time to make an impression on what we do here and how we do it.
These people who find us are just like you were once. New members scan the posts when they first join and decide in a matter of minutes sometimes if this site is for them.
They are looking for a site with answers. Looking for a site where you could share your struggles with others who are going through the very same thing.
The first thing I want new members to see is our posts about compassion, how we share with each other. Learn from each other. This disease is horrible and there has to be an outlet where you can go to let your mind get off of dementia.
This is why again we have so many spin off pages for pictures, crafts, book and movie reviews, cook book site, a site for loved ones who have passed, and a site for people to try to forget about dementia for a time, which is our Memory People II page.
A good rule of thumb when posting on Mp about your loved ones issues be them bathroom issues, or some very personal things that have happened is to think to yourself, "Is this something I would want posted about me if or when I am in this condition?" What I am trying to say it's all in the wording or description of something. You can post about anything here, just keep in mind of the patients dignity.
Is some of the photos you post something you would want your family to share with tens of thousands of people? All who are strangers.
Granted we are one big family here. And we are all adults. I have said this thousands of times. But we have to maintain our loved ones dignity. Even if they have lost it themselves.
One can get across for example the issues you encounter with bathroom accidents without giving us a blow by blow description. Ever time I read one of these posts, I think what if this was posted about you on the internet?
So, if you post something. A picture or are way to descriptive about things, personal things and you see they have been removed, there is a reason for that.
Keep in mind we have dozens of other pages where pictures and things of that nature can be posted. It is one of the reasons we have so many spin off sites. To keep Mp on point and about dementia.
I understand it's not a bed of roses and we do encourage you to post about your struggles. Perhaps just be cautious about what all you say about your loved one.
Always think, if this was me would I want someone telling tens of thousands of people about the problems I am having is such a descriptive way?
Don't stop sharing your comments, this is not what this post is about. It's about dignity. Everyone deserves to be treated with dignity, even when we have no idea what the word even means...
© Rick Phelps 2016