Thursday, November 26, 2015
I went to a couple of organizations that had message boards for dementia patients. All I seen separated the patients from the caregiver and even families.
There were even sites that if you had any form of dementia, depending of what type, there were different pages that would indeed once again separate the patients by what type of dementia they were diagnosed with.
I think the biggest thing I disagreed with, on many sites like this no one used their real name. Only some nick name. And all posts were not monitored and there was no fact checking what so ever.
You wanted to post about something, no matter how absurd, you could do that. And you need not use your real name.
Now how many of you can take anything anyone with the nickname "Blackjack" or "Cupcake" take anything they say seriously?
I couldn't and was determined to change this. At least, have a site where people actually were there under their real name, and the posts were true, not some fabricated thing past on from some internet site.
I also wanted patients, caregivers, family members and alike to be together on one site. All sharing their experiences. I was told by some very prominent people in the dementia world that this would simply not work.
"You can't have patients and caregivers together", I was told. My answer then and still is "Why not"?
Of course you can, and you should. All this boils down to perception. Or the way others think things should be.
You will be hard pressed to find anyone who praises the Alzheimer Association more for what they did for us. However, it is my personal feeling that what they do and where they spend 90% of their donations is too research.
And that is great. I am glad they do this. And they do it better than anyone else. However, because of their name alone, everyone feels they have the best and only way to offer support.
And that simply isn't true. Many times we are asked, "What do you do, on Memory People, that is different than the Alzheimer Association"? I tell them everything we do is different.
We don't separate patients from caregivers or family members, we don't have different pages for different types of dementia, when you go to one of our Memory People Support Groups™ you will not see caregiver and family members only.
We have patients, and we have people of all ages. We don't say, "you can't come to our support groups because you are not at least 45 years old".
And we don't say, you are not permitted because you are a patient. We do allow patients, caregivers, and family members to attend our support groups.
Not to do so, is in my opinion absurd. Everyone here knows we learn from one another. The good, the bad, and the ugly. We don't sugar coat anything and we don't believe in false hope.
You want to post about coconut oil being something that slows the progression of this disease? You will have to find another site to do so. The fact is for example is that coconut oil, or any other oil for that matter does not slow the progression of dementia.
Nothing does. Nothing. Now you can find many sites and articles on the internet that disputes this and does indeed claim that coconut oil slows the progression.
Here is my thing. If it did, a 8oz jar of coconut oil would cost you hundreds of dollars. You think that the makers of coconut oil would knowingly have something that slows dementia, yet charge about three bucks a jar?
Of course they wouldn't. And on top of that, every jar would plainly state that coconut oil, fish oil, or whatever does indeed slow the progression.
This is why I created Mp. What you read here may be difficult, but everything you read here is indeed true. It isn't something that someone copied and pasted off the internet.
We do ge those from time to time, but these types of posts are asked to be removed, and if they aren't, we indeed remove them. There are many, many people who make a whole lot of money off of dementia with all the false claims.
They won't do it here. What we have is Hope. Not false hope. Everyone wants a cure. Every patient would love to have a drug that would just make their day more bearable, more tolerable.
We're not there yet. That is the simply the truth. We will be, but we are not today.
Here at Mp we are all about Awareness and Support. We don't talk about cures, or other drugs that can do this or do that. We leave that to the procrastinators.
We also believe in research. But what we are all about is Awareness and Support. We want to tell the world the truth about dementia, we want to bring Awareness and knock down the stigma that goes with dementia, the denial, the senseless claims of a demanding a cure by 2020.
Who are such demands geared toward, and what is anyone going to do if a cure isn't found by 2020? Nothing. That's what. Keep trying. Keep researching.
But in the mean time, we will be here, helping you get through today. That is what is important. If a cure was found in 2020, it would be decades before it filtered down to us regular people.
And I won't even bore you with the costs of what it would cost the average patient. It would be and will be astronomical. It's how the system works.
But in the end, and all during this whole time, we will be here helping one another. Helping each other to get through today. Because deep down, it's all we have right now.
And it is the best thing that there is. Bringing Awareness and offering Support. It's what we do. And have since November 25, 2010.
The day Memory People was born...
Tuesday, November 24, 2015
As a patient, I didn't have any expectations about dementia, because we were like everyone else, until this disease comes into you life you don't give it a second thought.
That is the problem. It's not that people don't care, it's that they are literally oblivious to dementia. It simply isn't something that is a problem, until it is indeed a problem.
I have told many a caregiver to expect the unexpected. In other words you will not be able to know what is coming in your wildest dreams when it comes to what your loved one will do, how they will react, and what this disease will do to them and your entire family.
I have said for years, "have a plan, then have another", because the plan you have may not work. Something as simple as getting your loved one to take a shower can end up being a nightmare.
Those of you who are caregivers know this. Those who are not, will learn. There is no set of rules to go by to be a caregiver. There is no book.
That doesn't mean there aren't any books written on the subject, there are thousands. The issue is these books are largely comprised of situations and how the author would deal with them.
That is not reality. What you read in a book on Tuesday at 3:00pm is not going to help you one bit on Thursday at 2:00am when all hell has broken loose.
Many times I have heard people say they are born to be a caregiver. Well, that may be, but not a caregiver for a dementia patient you're not.
Think about what it takes to care for a elderly person, then think about what it takes to care for a new born, then think about what it takes to care for a person who don't recognize you, where they are, or what is happening.
Then combine all of these and you will have glimpse of what it is like to care for a dementia patient.
"This isn't what I expected". That is because of the stigma of this disease for one. Most people think of dementia patients as someone in the eighties, sitting in wheel chair, staring out a window and drooling.
They don't realize that some patients especially in the early stages can still be productive. They do have hours, even days of confusion. But there are times that you can put four complete strangers in a room and you could not tell which one has dementia just by looking at them or even talking to them for that matter.
I would love to have a dollar for every time I have heard, "You certainly don't look like you have dementia".
I always wonder if a deaf person looks deaf? Of course they don't. Neither does a heart patient look as if they are having a heart attack.
People have been diagnosed with dementia in the fifties, their forties, and even in their thirties. It's rare, but it has happened.
I can tell you this, there is not one other disease known to mankind that is close to being like dementia is. There is no cure. It is terminal. There is no slowing the progression. And there are no survivors.
You will see and hear things you can't even imagine when dealing with a dementia patient. And this can be in the very first hours they are up in the mornings.
No, indeed, this isn't what I expected. For those who tell you what to expect, have no idea what it is to begin with.
I have a brain disease. A disease that is taken over the most complex organ in the human body. The one thing I know to expect is, when someone tells me what is happening or what is going to happen, its an educated guess at best.
I live with this disease 24/7, and have for many years and I have no idea what to expect. Never have. Never will...
© Rick Phelps 2015
Monday, November 23, 2015
There are pros and cons to everything. And this topic is no different. Being a patient I can tell you that giving your loved one marijuana is one of those things that should have been talked about way before you think the need has arisen.
You will always have the marijuana proponents that say "Sure give it to them. It won't hurt and it will help with the pain".
Being a patient I can attest to this. First off, there is no pain with dementia. To believe this, one would have to believe that their brain hurts, beings it is indeed a disease of the brain. It doesn't and you have never heard someone say their brain hurts, sober that is.
Can there be pain associated with dementia? Of course, but it is rare at best. When a patient cannot swallow, there is no pain. When a patient cannot breathe, there is no pain. When a patient cannot remember who he/she is or anyone around them, there is no pain.
If a patient burned themselves on the stove, this obviously would cause pain, if they ran their hand under scalding hot water, again, there would be pain.
But this type of pain is caused from an action. An action the patient took because someone was not watching them. It is a fairy tale to believe that giving a patient marijuana helps with the pain.
What you are doing is giving your loved one a mind altering drug. You're giving a person with a brain disease, a drug that alters the brain. Now to some, that isn't a problem.
To me, it's a huge problem. But, like I said you will always have those who will say that marijuana is the best thing since coconut oil when it comes to dementia.
My thing is, if it is so good, why doesn't the Neurologists prescribe marijuana in the beginning? There can be just as much a chance for pain in a newly diagnosed patient, as there can be with one who has been diagnosed for years.
I have just as much pain today as I had when first diagnosed. But that pain is in my heart, not my head. And that is where your loved ones pain is as well, and no mind altering drug is going to lesson that. Pain is simply not a symptom of dementia.
This is like suggesting to someone who is severely depressed to go have a beer with you. Alcohol is a depressant. But the world is full of depressed people who use alcohol.
Being prior law enforcement, let me give you one more thing to think about. If you do indeed make a decision, be it yourself or as a family to give your loved one marijuana and something dreadfully goes wrong, they wig out or something, then whoever gave them this drug can and should be charged. with crime.
It's a misdemeanor to offer someone a small amount of marijuana, except in a few states. This is not one of those things that "if it feels good do it". But, and there is always a but, if the patient is 65 years of age or older it is considered elder abuse, which is indeed a felony.
I am not trying to be debbie downer here, I am just stating my opinion on this subject. Some of it opinion, some of it fact.
I think there is a huge difference between a cancer patient and a dementia patient needing medical marijuana. First of all, the pain experienced with cancer is just that, pain.
Once you figure out your loved one may be in pain with dementia, they are usually to far along to communicate that to you, so in essence it is an educated guess.
There are literally hundreds of legal drugs you can get from a doctor that will take care of any pain that your loved one is or could be experiencing.
None of them are mind altering. Some can cause symptoms of suicide, depression, etc. but that goes with just about any drug that deals with the mind.
The bottom line is, for your protection, you better hope you are giving them medical marijuana through a doctors orders and prescription. If you are doing this just because you have a hunch they are in pain, like I said, in the State of Ohio, it's a felony if they are older than 65 years old.
That's not my opinion, that is the law. This is one of those hot button topics for sure. And there can be debate. There usually is, just so it is respectful debate.
If you truly think that you are helping your loved one by giving them marijuana, there is nothing I am going to say to change that. I get that.
But like I said, if you are doing this because you think its best for them, well that is indeed illegal. In every state. You are dealing with people who in the beginning of this journey can't make wise decisions, and you are going on the assumption that they said or you think this would be good for them?
The only pain I have, and have had for years is not in mind. It's in my heart. And there is no drug or prescription that is going to help with that. Period.
© Rick Phelps 2015
Tuesday, November 10, 2015
I talk about acceptance of dementia a lot. For one reason. I have accepted what has happened to me, and I see how others who have been diagnosed who have not accepted what is happening are doing and there is no comparison. It is indeed like night and day.
Acceptance. Meaning you accept how things are. Doesn't mean you like them, or you agree, or you have given up in any way.
Having issues with my memory for at least five years prior to my official diagnosis,and its been another five since my diagnosis I have had at least ten years to deal with what is happing. And after that diagnosis, nothing changed. For me anyways.
I mean nothing change as far as how I was doing, I wasn't any worse after the official diagnosis. All I had was an official diagnosis of dementia.
I was just now officially diagnosed with Early On-Set Alzheimers. Beings I had issues for years prior to this diagnosis, that enabled me to accept this disease easier. When I was diagnosed it was like someone had lifted a weight off of my shoulders. I finally had a reason as to why thing were like they are. People would finally listen. They would understand why I had been complaining for years about my memory.
I wish I could explain acceptance better. If I could there would be no one living in denial about this disease. Not the patient, not the family members, and not the caregiver.
Everyday you live in denial, that is a day you will never, ever, get back. And this disease will progress whether you accept it or not.
You see when you accept something, anything, it makes whatever that something is much easier to deal with. It doesn't make what ever it is go away, and it doesn't necessarily change anything, it's just how you look at your situation, how you cope, and how you move forward.
I tell people all the time when they ask how I am, that I am thankful. Again, I guess you would have to walk a mile in my shoes to understand being thankful as well.
But the truth is I completely understand what is happening, what is gong to happen. I know what my fate is. Something very few have is knowing what lies ahead.
For that alone I am thankful. It has nothing to do with having this disease, what is has to do with is by the grace of God, I have been given this time I have to share my experience and struggles with dementia in hopes it helps just one family, one person.
There are days I am not thankful, of course. There are days when just putting one foot in front of the other is a challenge. Yet, those who read my posts, or are around me think, "He talks and explains himself so well, there is no way he can have dementia."
I have been told how lucky I am. There are a lot of adjectives I could use to explain how I am, but lucky would not be one of them.
When you look at your loved one, in perhaps the later stages of this disease, you have to wonder how could anyone consider what they as a patient, or even I as their caregiver be taken as thankful.
It isn't of course. I too will come to a place with this disease where I am not thankful. Those around won't feel thankful, and the whole thing in general will not be something that can be looked back on and be thankful in anyway.
But they should. You see, right now I have had with my prior memory issues before the diagnosis, and since, being close to ten years, I have had ten good years.
In them then years there have been plenty of days, hours, and minutes where I didn't have the ability to feel thankful.
When you hear of a patient who is either in the beginning, or mid stages of this disease, you will hear them talk of "bad days", or "foggy days".
The reason we refer to these days as "foggy" has nothing to do with how we see things, it has to do with how are brain perceives things. You can't think clearly, you can't make decisions on even the best of days.
In the last ten years I couldn't begin to tell you how many of these days I have had. On an average and the thing you have to realize is there is no average with this disease, but if you could begin to average out how many bad days a week I have, I would have to say four.
And them three "good days" I have, those days are always filled with hours of confusion. There is no time when I am free of dementia and neither is your loved one.
This is why, especially in the beginning you realize how thankful you should be. And if you accept what is happening, I will tell you that this road is a lot easier to go down.
I see everyday people who are in denial, people who won't accept what is happening to them or their loved one. The sad part is you cannot help these people.
Acceptance can only be done by the individual. Be it the patient, or the family. And as I have said over and over again, when you are in acceptance it doesn't mean you have given up as a patient or a caregiver.
It simply means you understand what is happening, and what is coming. Then you can have a plan, then have another, because you will need a plan.
And that plan will change nearly everyday. When you are in your darkest moments, as I have been with this disease. When I can't figure out for the life of me what is going on, I am bombarded by the symptoms of depression, anxiety, fear, loneliness, confusion and despair, it is times like these that one is not able to accept what is happening.
When you have these dark days, these foggy days, these bad days, you are not able to accept what is happening, simply because you are not able to do anything rationally.
But today, I am thankful. Right now I am thankful. I accept what is happening and I accept what is coming. I may not in an hour. And that is how dementia works.
There is no rhyme nor reason to this disease. Those who tell you they have it figured out, what to do for your loved one in almost every scenario you can think of, are just telling you what you want to hear.
Take a step back when things become chaotic with this disease. You will not and cannot change what is happening. The only thing you can do is take one day at a time, cope with what is happening right now.
Because in an hour, all hell may break loose once again. Once you learn to accept what is going on, instead of trying to change it, you will feel a sense of peace come over you.
Will it change what is happening? Of course not. But it just may save your sanity. I am not an expert in the field of dementia, but I am a patient. Trust me when I tell you, acceptance is the way to go.
© Rick Phelps 2015
Friday, November 6, 2015
Where to they get these people who write these articles? Without fail every site I have seen goes into detail of what to do, what not to do, what your loved one should be doing...and on and on.
I wanted to list a few suggestions they give:
Look after your health:
They go into detail about how living healthy life styles is the very best way to prevent dementia. Really?
I like to think of myself as a somewhat healthy person, even after being in my fifth year of my official diagnosis.
My life style had/has nothing to do with me being diagnosed with dementia. It just doesn't.
Maintain a social lifestyle:
This is another suggestion where it makes no sense at all. The last thing you will hear a dementia patient say is "I just love being in a room full of people" or " I can't wait for the holidays, all the kids and commotion. I just love the confusion the holidays bring."
The truth is people with dementia by far do not want anything to do with a social lifestyle. Once again, this is just what people perceive. The busier the patient is, the less they will notice dementia. Again, doesn't work.
Try to sleep well:
I have been battling sleep disorder for years from this disease. You will read that sleeping pills will help, as will no napping during the day.
From experience I can tell you sleeping pills do not work. Sleeping pills will help you if you are suffering from not sleeping. What we as dementia patients suffer with is much more than not sleeping.
It is a disease of the brain, and no sleeping pill is going to help that. Also I hear all the time, no napping. This again is wrong. You know how you feel when you are exhausted, mentally and physically exhausted?
Well, thats what it's like for a patient. If they are tired, or sleepy why on earth would it matter to let them take a nap? It doesn't. Another misnomer.
Keep active and occupied:
I especially love this one. Some think we are like little children. Keep us entertained and we will be fine.
Not true. Not even close. Some of my best, quality time is spent doing nothing. I don't have to be entertained by anyone, at any time. My brain is going 100mph 90% of the time as it is.
I don't need to do brain games, or teasers. These just make a bad situation worse. When you have a memory deficit, why would anyone think that doing something that exploits that very deficit would be good for anyone?
This is what they say about "self care"..."Self care is an integral part of daily life and involves taking responsibility for your own health and wellbeing with the support of those involved in your care. It includes the actions you take every day to stay fit, maintain good physical and mental health and prevent illness or accidents, as well as the effective care of minor ailments and long-term conditions."
This is fine if you live in the land of Oz. "Actions you take everyday to stay fit?"
Myself, sometimes just putting one foot in front of another is a challenge. But these people want me to stay fit. When you have dementia, which is a disease of the brain, everything changes. Everything.
Maintaining good physical and mental health...this all sounds good. It's just not reality. What it is, is pie in the sky.
If I can remember how to make coffee, it's a good morning. If I can make out what my wife and I talk about in the mornings, it's a good thing.
The only real thing you remember with this disease, is that you have this disease. The one thing you wish you could forget, is the one thing you simply can't forget
The only thing you really know is that you are losing you mind, slowly but surly and you actually know this is happening.
This is just an example of how out of touch some people are, yet everyday they tell you how your loved one should be reacting, or what you should do for them.
Do yourself a favor, use some common sense. That will get you further than any suggestions from someone who think they know this disease. It really will...
Are they safe?
Are they pain free?
Are they content?
These are the three things, if you can answer yes to them, you are doing the very best you can. All the other, is what the experts "assume"...
© Rick Phelps 2015
Thursday, November 5, 2015
If you have car trouble who do you go to? If you have furnace issues, who do you call? If your computer just stops for no apparent reason, who would you take it to?
The answer to these are, or should be obvious. If you car needs repaired, you take it to a reputable car repair garage. If you furnace is on the blink, you call a heating and cooling specialists. If your computer isn't working, you take it to someone who repairs computers.
Keeping this in mind, why is it so many individuals rely on what some "expert" has to say when it comes to dementia? And the only thing that makes these individuals experts is their status. Not what they actually know about dementia.
I never have, and never will understand this. Take Seth Rogan for example. He's a comedian, an actor, the son-in-law of a dementia patient. But since he is who he, everyone thinks what he has to say is gospel when it comes to dementia.
He did himself and the disease a disservice when he spoke in front of the Senate a year or so ago. He chose this time to make jokes about dementia and his marijuana usage..There is time and place for this behavior and that certainly was not it. There were four Senator's present. That in itself should have told you something.
There are many stigmas's that go along with dementia. One of them being but is always overlooked is the fact that there are so many "experts" that are in the dementia world, yet they don't have the disease.
Think about the commercials on tv that reference cancer, or stroke victims, heat attack victims, etc.These commercials talk to cancer patient, or a person with that has had a heart attack, or stroke. Some granted are actors, but most have had the disease that the commercial is about.
When you see a commercial on tv about dementia, you see a person portraying that they have dementia,or you see someone who is walking to cure dementia, you don't see and I never have seen an actual dementia patient in these commercials.
Why is that? This is the only disease that I know of that many rely on the "expertise" of people who don't have the disease.
When we were invited to Washington DC for a conference there on dementia and to meet with members of Congress and the Senate, the key speakers there were Kathleen Sabillus, and Newt Gingrich. Along with them there were three other speakers.
None of them had dementia, obviously. There was not one person on the stage that had this horrible disease, yet there were plenty of "experts" there to tell the audience all about the disease. Does anyone really believe that Newt Gingrich, who was the very next day announcing his candidacy to run for President of the Untied States, really know what it takes to care for a dementia patient?
After Speaker Gingrich spoke they opened the room up for questions. It was about this time that the representatives of the Alzheimer Association realized that they made a mistake inviting me.
I was the third one called on in a room of over 400 people. I stood up, introduced myself and went on the explain my disbelief that there was not one dementia patient being represented on the stage to tell what they go through dealing with dementia day in and day out.
Even then, know one really understood what I was saying. It certainly didn't have to be me up on that stage telling my story, it could have been any patient. The problem was there wasn't any patient there to talk about what it is like to have this disease.
This is where the AA and many other organizations are missing the boat. They pick these poster boys out each year, and every year it's some new celebrity who either has a loved one with dementia or knows someone who has dementia.
With their celebrity status alone people just take for granted they know what they are talking about. This is a misnomer.
Belive me when I tell you that Kim Campbell will never know what the common person deals with who cares for a dementia patient. Anyone who has made millions of dollars will not know what it is like to care or provide for a dementia patient, simply because they can provide a level of care that is second to none at the blink of an eye.
And there is nothing wrong with this. The issue comes when they get on national tv, or are interviewed in some magazine and tell how difficult they have it.
They don't. And anyone who thinks for a minute that Mr. Rogan, or Kim Campbell, or Pat Summit know what it is truly like being in the trenches of this disease, is simply misguided by their celebrity status.
Pat Summit came out when she was diagnosed and said on national tv that even though she was diagnosed wth Early On-Set Alzheimers, nothing was going to change. She actually said nothing was going to change. And the media ate it up.
She would continue to coach, and she would beat this thing. She wasn't a quitter and will not start now. Well, she did quit coaching women's basketball the very next year. And she has found out that no amount of money will provide or allow her to live the life she once did.
Pat Summit in one interview set back the awareness of dementia. She should have never have given that interview, and she should have at least been questioned on how she came to the conclusion that nothing was going to change.
But, again, her celebrity status affords her to say stupid things like nothing will change, and not be challenged on it.
So, if your transmission is going out on your car, don't take it to a place that works on motorcycles.
Someone standing in a garage does not them make them a mechanic. In other words, look at the source of some of these claims from the "experts" of dementia.
Like I have said for years now, you want to know about dementia, ask a patient. You want to know about caregiving for a dementia patient, ask someone who does it.
They are the experts....period.
© Rick Phelps 2015
Tuesday, November 3, 2015
All these are questions that need to be dealt with at one point when caring for a dementia patient.
In some cases, the patient is cared for at home until the very end. In some cases.
The issue here is few even talk about placement, let alone check into it until it is inevitable. This is something that should be discussed with the patient, not behind closed doors.
Of course if the family waits till the later stages the time to talk to the patient about their feelings on placement has long came and gone.
There are many stigmas that goes along with dementia. How care facilities are now, as compared to how they were twenty, thirty, years ago is one of these stigmas.
I contend that the person who rants and raves about not placing Mom in a facility because of the smell, the antiquated building, the dated tile floors, and on and on, have probably never even been in a care facility in the last ten years.
The thing is over the last ten years these facilities have modernized. Gone is the smell of "old people". Gone is the urine smell, the pale lighting to make it drab in appearance.
These places now have wall to wall carpet, they have flat screen tv's, they have lighting that doesn't look like it came out of the 1920's. And at many of these facilities you can order what you want to eat from a menu.
Most of them do have limited staffing, this is just the nature of the beast. They are a business, and they are in business to make money. You are not going to see nurses or aids for that matter standing around with nothing to do.
Sometimes the ratio of nurses to patients is one to how many patients there are. Every facility must have a RN on sight. Then they go to LPN, and aids.
As far as hands on with the patients, the STNA's, there can be as many as a half a dozen patients to one aid. This is just the way it is.
When you are in a facility, you won't get waited on like a hospital. Sometimes you have to stay on them to make sure for instance that your loved ones pain meds are being administered on time.
Again, this is the nature of the beast. But all in all, like I said, these facilities are not like they were twenty years ago. The problem is those giving these places a bad wrap haven't been in one in decades.
Or they made some stupid promise twenty years ago never to place their parents. You will hear this all the time, "I promised Mom I would never put her in a home".
This to me is so shallow. Why would anyone put their loved ones care in jeopardy over some promise made when the person was fine.
When making such decisions no one takes into account how they or if they will be able to provide such care that is needed for in home care for a dementia patient in the later stages.
Here's whats important. There is never a downside to placing a loved one too soon. There are all kinds of downsides to placing them too late, and none of them are good.
Chances are everyone has made a solid vow to take care of their parents, spouses, kids, etc. To make sure they are getting the best care afforded to them.
And by keeping them at home when you know deep down you simply cannot provide the care that is needed 24/7, but you still do it, then you are not keeping your promise to take care of them.
By placing someone, you have not given up. You have not lost. All you are doing is recognizing and dealing with the fact that you cannot provide the care that is needed any longer.
It's knowing you can't, yet you continue to do the best you can that is a problem. Knowing when it is time is very important. Waiting to the last minute is also a mistake.
Placing a loved one is much more than loading them in your car, pulling up to a facility and announcing that you are here. Every patient has to be placed through their doctor.
None of these facilities are hotels, you can't just check in and check out. There are countless things that need to be done, and none of them happen overnight.
Payment is the first and foremost on the minds of these facilities. Like I said it is a business, and they even though they don't convey it at the time, they do want and will get their money.
You won't find a facility that will take your loved one if there is no insurance and no way to pay them by private pay. They won't have a bed taken up by someone who can't pay, and have someone that is eligible waiting for a room.
The doctor is the one who places your loved one. Not the family . This too is a misconception. Some think it is the family who makes the decision. Which it is in the beginning, but the doctor has to be the one to sign the patient into a facility.
Placing someone is indeed very difficult. Feelings of failure, to depression, to stress, and loss are all involved. I am here to tell you that first of all you are and always will be the primary caregiver.
Just because you have made the decision to place your loved one, your responsibilities as a caregiver do not diminish. If anything they are more important.
You have to make sure the facility knows your loved one. They are not just another patient. Tell them there likes, their dislikes, their fears, what agitates them.
Make a list of thing, you will never remember them all. Make sure the room where your loved one will be is surrounded by things they love. Pictures, a way to play their favorite music, the tv is able to get their favorite shows, you have their pillow there, comforter, etc.
There will be a process of them getting used to the new surroundings. And this process differs for each patient. Could be hours, days, or weeks.
The thing to remember throughout all of this is that you are doing what is best for them, not you. Placing them to me can be one of the most loving things you can do for a loved one.
You are doing something you mind says is right, but your heart tells you different. You told them you would take care of them, and you are by getting them the care the deserve and are entitled to.
Just because that care is more than you can do now, does not take away anything. They are simply in a place that can provide the 24/7 care that some families for whatever reason cannot.
I am not an expert on placing a patient. I don't think anyone is. But I am a dementia patient in the mid stage of this disease. And Phyllis June and I sat down years ago and I explained to her and our family that I indeed want to be placed when the time is right.
It is her responsibility to know when that time is. Just knowing this is what I want now, takes a huge burden off of her down the road. Will it still be difficult? Of course, but she will know that this is what I want, and we made this commitment a long time ago.
Talk about this. Don't let the possibility of placement become the elephant in the room no one mentions, yet it is there. If you haven't talked about it, there is no better time then now.
Not every family will face placement at some point. And that is wonderful. I want to change the stigma that it is wrong to do so. Because the simple truth is that it is not wrong.
If your loved one falls because you lost control of them in the middle of the night, and they are frail to begin with, the chances or breaking a hip are very good.
And for the elderly, a broken hip can be deadly. Even those who are not diagnosed with dementia and fall and break a hip are very likely to be bed ridden or even die from the injury.
There is no downside to early placement of a loved one. There is no time table to go by. There are many downsides to waiting to long for placement and all those downsides are very, very difficult at best. And can be life threatening.
© Rick Phelps 2015
Monday, November 2, 2015
Abuse is one of those things sadly that happens with dementia patients. It occurs in other illnesses as well.
Abuse can happen anywhere, at any time. It doesn't only happen in a facility by an employee there, it can happen right in your own home.
It doesn't have to be a stranger, or a person employed at the hospital, or nursing home. Abuse does occur by family members
And abuse can be done by the patient, as well as to the patient. Either way, no abuse of any kind should be tolerated.
Verbal abuse can lead to and be just as devastating as physical abuse. When a patient is not being properly cared for, and the person who is in charge of their care does this on purpose, it is indeed abuse.
Force feeding can be a form of abuse. If not done in the proper way. Bathing also can be abusive again if not done properly.
If you are making your loved one take a bath or shower, and all the time yelling at them, forcing them to get in the tub, grabbing them and threatening them in anyway, this is abuse.
Many times what we think is abuse, is actually assault. When you hit someone, shove someone, do any kind of physical harm to anyone this can be constituted as assault.
And if this occurs to a family member, it becomes domestic violence. Here in Ohio, the second time you are charged with domestic violence, it is a felony.
Doesn't have to be the same person who you assaulted, if you are charged twice with domestic violence and found guilty it is indeed a felony.
The State of Ohio takes domestic violence very seriously. And when what you think is abuse involves a family member, it can very well be domestic violence instead of an abuse charge.
What to do if you even think abuse has happened? Report it. Document it. If it was in a facility, make sure it is documented, pictures taken by you and the facility.
Make sure the authorities are contacted. Don't let an abuse case be handled within. A police report and an investigation needs to be done.
Take your loved one out of situation immediately. If it is in a facility, move them. If it is in a home, move them.
Remember, this works both ways. The patient can indeed be the one doing the abusing. This too cannot be tolerated. Sometimes sadly the only way to stop this is to have them medically sedated.
If a person was someone mean, or abusive in some way before dementia, there is a high probability that they will be more so after dementia. This doesn't hold true in every case of course, but it can increase. And this is attributed to the disease; not the person. Some people will do things like abuse that would never dream of doing it any other time.
The bottom line is there is no place for abuse of any kind in our society. It is against the law to actually put your hands on another person. That is called assault.
When a person is being mistreated, grabbed hard to cause bruising, if they are being slapped, or hit in anyway, even talked to in a demeaning manner or threatening way, this can all be looked at as assault other than abuse.
Being in law enforcement and EMS for 25 years I seen my share of abuse and assaults. It is sometimes unthinkable what we do to one another.
I once charged a Pastor at a local church here for assault on a 12 year old boy who was handicapped. What he thought he was doing was setting rules, and making sure the boy followed them.
In fact what he was doing was abusing the child, and I had evidence that he had assaulted the boy as well. Long story short, he is no Pastor now, he did some time, and his life was ruined.
But what he did to that child may never be undone. Anyone can fall into this mess, being the abuser or the victim of abuse. It's is much like dementia, abuse knows no boundaries, does not see race, or doesn't matter your financial status or your status in the community.
It is rare that it happens in facilities. Most facilities keep a very good eye on this kind of thing. But it does and can occur. It is up to you, the primary caregiver to see it doesn't in any situation.
And it is up to every family member to see that abuse is not happening in their family and if so reporting it.
If you think this is even occurring, or could occur, then you are most likely right. Caregivers and family members need to be diligent. You are never taken out of the caregiver role, even if they are in a facility.
Check you loved one for bruising around and under their arms. In the small of the back, under their blouse, or PJ's, just lift their shirt up and have a look.
If you go to give your loved one a kiss or hug and they suddenly pull back from you, and they don't usually do this...this could be a red flag.
I tell people all the time put a hidden camera in the room of your loved one who is in a facility. And don't tell anyone. If you tell anyone there is a hidden camera that defeats the very purpose.
Some will tell you it is illegal to do so in facilities. I say they are wrong. You have the right to do what you need to do protect your loved one.You are paying for that room, which is no different than if you were renting a house and had a camera installed to watch a baby sitter, or whoever. Granted the camera can not invade another patients space or privacy.
But, you can indeed use these hidden cameras. They are very easy to set up and very inexpensive. Just don't tell anyone. That is the key. Once you tell someone, anyone, it no longer becomes hidden or useful.
Many dementia facilities have private rooms anyways. But if they do share a room with another patient, just set the camera up where it will only see your loved one. Not the shared bathroom, or whatever.
Again, abuse is not an epidemic. But we need to be aware it does indeed happen.
© Rick Phelps 2015
Sunday, November 1, 2015
"When will the madness end?" "When will things get better?" Questions we all ask. Everyone wants answers. And you will see some answers, from some "experts."
But is it what a dementia patient indeed goes through? Is what they are telling you, is that what it's like to be a patient of this horrible disease? Or are they wrong? Here is my take on this disease. From a patient's perspective.
The truth of the matter is this madness will never end. It will sometimes subside. You will see glimpses of your loved one from time to time.
But end? Not so much. This is the only disease known to mankind that there is no cure, there is no reversing it, there is no slowing the progression...and there are no survivors.
The hard truth
I have read that sometimes the posts on Memory People are hard to deal with. Let me tell you what hard to deal with is.
Taking your grandchild to school, listening to her stories, and knowing one day you won't even recognize her. You will likely not see her graduate, her wedding or her children. Dementia has a predetermined outcome for you.
It only takes a little, at first. Some of your short term memories. Then, slowly but surely, it takes all of them. Then, in time, it begins to take your long term memories as well. And in time, dementia will indeed take all of them.
All along, you do realize that this is happening. And there isn't one thing you can do about it. I think many times what will happen when I can no longer remember who I am?
And who those are around me? What will it be like? Will I be scared? More scared than I am now at times? Is that even possible?
What is Alzheimer's really like?
Many times I am asked what is it like to have Early On-Set Alzheimer's? This is what I have come up with.
There is a drug called Versed. It is used for minor surgeries, dental procedures, etc. We used it a lot in EMS work. What this drug does is erases your memory. Your short term memory, to be exact.
It has a short half-life, meaning it only lasts ten or fifteen minutes, but the effect is astounding. You give this drug to someone and they will not have any recollection of anything that has happened in the last few minutes, and with some, the last few hours. It completely erases one's memories; short term ones, anyways.
I say give this drug to someone. Then when they come to, have them in a strange building, one they have never seen. Surround them with items they have never seen. Can be anything, just things you are sure they would not recognize.
Then don't have anyone in the room with them. They are all alone for say five minutes, then one by one, people, complete strangers begin to enter this room and talk to them as if they have known them their entire lives.
Talk about things they have never heard of before. Talk as if one of them is their daughter, their spouse, and their pastor. Tell them they are so sorry for their loss. All the time the person will be wondering what is going on.
Then tell them that you have decided because of their prognosis that you would be taking food and water from them. And then, tell them that everything is going to be alright. What is about to happen will be okay.
Then leave the room. Tell them you will see them later. And you will be praying for them...then leave them alone. Entirely alone.
This wouldn't begin to show what a dementia patient goes through. But you can believe this, it would be a whole lot closer than the Virtual Dementia Tour.
Trust me. Why? Because I am a patient. Not someone who talks about dementia as if they have had it. But someone who lives with this disease day in and day out.
"When will it end?" It won't. The only time peace will come is when we take our dying breath. Isn't it strange that for me to find peace with this disease, everyone around me must then grieve?
That is dementia. And this is something we live with, as patients. Caregivers too die a little bit each day along with the patient. It is the most devastating thing you will ever encounter in your lifetime.
As a patient, or as a caregiver. It just is...
For support for this journey of dementia, join us at Memory People, on Facebook. We'll walk this with you, each step of the way. You are not alone. https://www.facebook.com/groups/180666768616259/