Saturday, January 31, 2015

If and When To Call Hospice

If and when to call in Hospice? I have been asked this question many times. To answer this, you have to have a basic understanding about what Hospice is and what they do.

Here is the basic concept of Hospice and what services they provide:

Hospice is a concept of caring derived from medieval times, symbolizing a place where travelers, pilgrims and the sick, wounded or dying could find rest and comfort. 

The contemporary hospice offers a comprehensive program of care to patients and families facing a life threatening illness. Hospice is primarily a concept of care, not a specific place of care.

Hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. The dying are comforted. 

Professional medical care is given, and sophisticated symptom relief provided. The patient and family are both included in the care plan and emotional, spiritual and practical support is given based on the patient’s wishes and family’s needs.

Trained volunteers can offer respite care for family members as well as meaningful support to the patient.
Hospice affirms life and regards dying as a normal process. Hospice neither hastens nor postpones death. 

Hospice provides personalized services and a caring community so that patients and families can attain the necessary preparation for a death that is satisfactory to them.

Those involved in the process of dying have a variety of physical, spiritual, emotional and social needs. 
The nature of dying is so unique that the goal of the hospice team is to be sensitive and responsive to the special requirements of each individual and family.

Hospice care is provided to patients who have a limited life expectancy. Although most hospice patients are cancer patients, hospices accept anyone regardless of age or type of illness.

These patients have also made a decision to spend their last months at home or in a homelike setting.

What services are provided?

Comfort care for pain and symptom management

Maintenance care for existing chronic conditions such as diabetes or emphysema

Support for emotional, social, psychological and spiritual needs and issues related to dying

Needed drugs, medical supplies and equipment

Mentoring for the individual, his or her family, and friends on best practices in patient care

Services like speech and physical therapy, which can be accessed when needed

If receiving hospice at home, payment for short-term inpatient care is available when symptoms become too much to manage or when caregivers need a respite break to take care of themselves

Grief counseling is available and can take the form of a support group, one-to-one therapeutic counseling, spiritual counseling, phone check-in calls and educational materials to surviving family and friends.

Since 1983, Medicare has paid for most hospice care received in the United States. Other payers of hospice care include Medicaid (in most states), the Department of Veterans Affairs and most private insurance plans.

Typically, no one is turned away from receiving hospice. Private contributions and donations are used to help cover the cost of care for those who have no other ways to pay for this service.

A rule of thumb is if you are talking about calling hospice in, in most cases the time has already arrived.

The length of stay a patient may stay on hospice here in Ohio is six months. Obviously, if the patient is still living within that time period they don't kick you off the program.

The patient will then be reevaluated, and in most cases they will continue to stay on hospice. I personally know hospice patients that in fact still drive cars, and go about their daily lives.

You do not have to be on your deathbed to be involved with hospice. I can tell you this most patients I have ever come into contact with are not ambulatory.

In other words most are bed ridden, and indeed in the later stages of dying. Hear locally, to receive hospice services must go through the patient's physician.

One does just not contact the hospice organization, tell them their father is dying and the patient is automatically placed on hospice care.

I cannot emphasize how important the hospice organization is for terminally ill patients and their families.

As with any other organization, you will hear horror stories. Anytime I have ever found hospice to be cast in a bad light, the claims were simply not justified.

If you are involved with hospice and you think something is not being done right, patient is not getting the proper care, or you as a caregiver or not being kept up to speed, one should always contact the hospice organization and force their complaint.

I know this is a very long post, but this is an extremely important topic. As I stated before, the patient doesn't need to be on their deathbed to call hospice in.

If you have any questions at all, or think it's time you as a family should contact hospice, please follow through. These are professional, kind, loving, and caring volunteers.

Over the years I recommended hospice to dozens if not hundreds of families. Each and every one of them thanked me, however I told him all the thanks belongs to each of these volunteers that make hospice the organization it is.

Wednesday, January 28, 2015

Memory People 10,000 Members Strong Video

Today we mark a very important milestone, for all of us here on Memory People.

We are now over 10,000 members and growing everyday, every hour, sometimes every minute.

Some will say “It’s all about the numbers for Rick Phelps”, and it is.

Without the numbers, the members here, Mp would not be the site it is. I would still to this day be sitting in front of my computer looking for somewhere to find answers.

We have that here at Mp. We don’t have all the answers, we never claim to. But I can tell you this, what you get here is a large dose of reality.

Sprinkled in with some common sense, and topped off with some put your big boy pants on.. because we can’t fix this.

Having dementia of any kind is horrific. Being a caregiver/family member who has to watch their loved one slip away a little at time is indeed horrific also.

I have long said one of the hardest things to do is to lose your mind, and all the time know exactly what is happening.

The only thing that keeps me sane is my Faith, my Family, and Memory People.

Memory People is not about Rick Phelps. It never was, it never will be. It’s about the members here who pour their heart and soul out to each other.

It’s about knowing what is happening and what is coming. It's about having a plan. About helping one another through unbelievably hard times.

The bad days. The hallucinations, the wandering of patients in the middle of the night.

It’s about Sundowners. It's about losing your loved one a little more everyday.

Memory People is about these and so many other things. But most of all it’s about you. Every single one of you are just as important as the next.

It doesn’t matter if you were here in the beginning or found us yesterday. Everyone here is important to us.

Where could you find a site that asks of nothing, yet offers everything?

Where can you get answers to what you ask, not something you want to hear?

We are here for each other 24/7, 365 days a year. It doesn't matter if you post several times a day, or you have never posted at all.

Some get Support by just reading our comments. No requirements. We encourage debate, but respective debate.

No one has all the answers, let alone all the right answers. But we go through this together, as it should be.

We celebrate not the fact that we have over 10,000 members now. We celebrate the fact that what that number represents is the number who have found us, and by their own admission have had a life changing experience since being here.

We are sorry for the reason you are here. But we are glad you are no longer alone in this journey.Today, January 28, 2015 is indeed a milestone for each of us here. But it is just that, a milestone…with many more coming.

Thank you for being here. I knew this is what I needed, and I knew there had to be many others that needed this also. Each one of you has turned a dream into a reality, for us all...

Movies and Dementia, A Patient's View

There have been many comments about the movie Still Alice. I wanted to offer one from a patient. An Early On-Set Alzheimer patient. The same as the what was portrayed in the movie. 
Keep in mind as always, these are just my thoughts. No one need agree, but also keep in mind I am a patient, not an actor...
If the movie Still Alice was portrayed as dementai actually is, there likely wouldn't be anyone go see it. More accurately it most likely would have never been made. 
Many times a year there are specails on tv about dementia. Most are what I call "fillers". They are there to just fill time. 
The truth is, demenita is not that dramatic. Not in the way it is portrayed in Hollywood anyways. I have watched many movies on this topic. Most are just that, movies. They tell a story, a dramitic story.
I had to deal with this when a camera crew was here at our house doing a documentary for a director out in Los Angeles. 
Many times I was asked to "portray" things that just weren't happening with this disease. That is what it'sll about, drama. They wanted the "dementia" to come out.
When I explained the "dementia does not just come out", they had to regroup. They once wanted me to stare into the mirror in our bathroom. Just stare, looking as they termed it "lost". 
I once again had to explain that dementia patients do not stare into mirrors. This is a fallacy. In reality many times mirrors are covered for that very reason. 
The patient does not recognize the person they are seeing. So, mirrors are covered, no one encourages a patient to stare blankly into a mirror. 
Take for instance what we have done here. In just over four years we have taken this site from one member, over 10,000. 
We have brought Awareness to this disease like no movie can. We have helped our members out in the very time of crisis. We bring more Awareness and offer more Support by accident than this movie could ever do.
Never have we fabricated what goes on with a dementia patient here. We haven't and we won't. 
That is what Hollywood does. Fabrication. I am not here to talk negative abou the movie, "Still Alice". It is what it is. 
A fictional portrayal of the life of a Alzheimer's patient. The chacters are not real, the story is not real, and the events are not real. 
It's not even close as to what a family deals with when dementia of any kind comes into your life. 
If it was accurate, it simply would not be done in Hollywood. 99% of the movies that come out of Hollywood are just that, fictional. 
And for the most part, everyone is alright with this. Till a movie about Alzheimer hits the big screen and some patients are like "I don't do that" or a caregiver says "Who does that with their loved one. That isn't even close as to what happens on a day to day basis".
Again, I am not knocking the movie, so if anyone claims that I am, that would simply not be true. What I am saying, this movie, just the like the hit movie "American Sniper" that is out right now is fictional. Not all of it, but some. 
American Sniper is a story of the most decorated sniper in the history of any conflicts we have ever waged. However, and here is where and what people need to understand, a lot of American Sniper is done for dramatic purposed. 
The scenes where Chris Kyle is looking for the notorious terrorists sniper and takes him out did not happen. The two never were close to one another. 
And though this villian in the movie, did indeed have a bounty out on Chris Kyle, the two never once seen one another. But that isn't dramatic. 
Them "stalking" one another is. But it didn't happen. Read the book.listen to the interviews that Kyle did. 
Movies are made to make money. And a moive about what we have done here on Mp for example would never make money. There is drama, there is stress, there is losses. 
But not to the effect that any movie maker, any director would say, "I want to do a movie or a documentary of what they have created".
We can't even get a piece done on a national tv spot, such as Fox News, Good Morning America, whatever. We have tried for years, exahasted all avenues and have yet to land the one big interview that would do what we have always wanted. 
Bring Awareness. Offer Support. We do it here, and we do this better than anyone else. Just remember if you go to the show to see "Still Alice", unless this diseaes has came into your life you will not come away with what dementia is. 
You just won't. You want to see a movie that portrays Alzheimers, watch "Still Mine".
A rather low budget movie that is now on Netflix. It is in my opinion the best movie to date about dementia. Watch this movie and you will see what a caregiver, and a patient go through. 
But you won't see raves about this movie because it is not that dramatic. It is indeed accurate, but accurate doesn't sell tickets.

Tuesday, January 27, 2015

Dementia patients cannot be taught to remember

I wanted to touch on something that we talk about all the time. But the perception of this is it can be changed. It can't.
Many time members ask what can I do to make, or help my love one remember something?
"Why do they do something over and over, when I have showed them the proper way to do something?"
"My Mom just does things to provoke me" or "They can remember things when they choose to".
When you are a caregiver, the task at hand is never, ever, easy or done. It's one thing after another. Bathroom issues, shadowing, sundowning, constant repeating of ones self, verbal and sometimes physical abuse...
The list goes on and on what a caregiver goes through. Is it any wonder that caregiver thinks that their loved one is indeed "playing" them at times?
As hard as it is to remember, you cannot make, or help your loved one remember anything. It's just not going to happen.
Taking my medication is a perfect example. I have struggled with this for years now. My wife lays my meds out, right on the dinning room table before she leaves for work.
Most times, I don't take them right away, my coffee is too hot or whatever. They lay right here on the table in front of me. If she leaves and haven't taken them, I generally may, but it could be as late as two or four in the afternoon.
Like I said, they are laying right here in front of me and it's not like it's an issue to take them. I simply don't and can't remember. 
It isn't a choice. It's a symptom of the disease. Not being able to remember is the very fist symptom you will encounter with this disease. And it will be an issue for the rest of the patients life, and of course it will progress.
We talk all the time about how this disease progresses, yet we expect at times for the patient to "remember" something. We can't. It isn't going to happen.
Wanting us to remember, or thinking you can come up with some gimmick to help us, isn't going to happen either. The first thing you lose with this disease is your short term memory.
Then, the loss of your long term memory soon follows. This can happen rapidly, or progress in some patients more slowly. There isn't any rhyme nor reason.
What I am dealing with right now and have for some time on top of not being able to remember is not being able to recognize things. I can be looking for my shoes, or the tv remote for example and they could be right in front of me, but for whatever reason my brain no longer recognizes things.
This doesn't happen constantly, but I am sure it will get worse, and progress in time. Not being able to recognize things is horrible.
It has to do with how fast the disease spreads in ones brain, how long one has actually had dementia, and where the disease actually started at.
None of these things can be determined. If you are seeing a doctor that tells you they can be, change doctors. Because they simply can't. Maybe someday, but not today.
What I go through, is not perhaps what your loved one is. I can walk into any room in our house and not know what I am in there for. This is not unusual, matter of fact it is very common.
I used to make life and death decisions in a matter of seconds in EMS and Law Enforcement, now it takes me two or three minutes to pick my socks out for the day. And almost all of them are either white or black.
This is not only scary to the patient, but it is demeaning. I am very aware of what is happening, as is your loved one I'm sure. This is where denial plays such a huge role with this disease.
If you deny something is happening, then you think it will just go away or get better somehow. This disease doesn't and won't.
What people tend to not realize is that this goes on with us constantly. There isn't one hour, or one minute for that matter that I do not have a memory issue.
This makes making decisions for me anyways, sometimes impossible. I tell people all the time, don't ask or expect their loved one to make decisions, even little ones.
"Do you want to go out and eat tonight, and where would you like to go?" Seems like a simple and most appropriate thing to ask your loved one, especially if they are in the early stage of this disease.
But, in reality that simple question can set me into a tail spin. The stress starts up immediately. Where will we go to eat? Will they be busy? What will the waitress ask me? How many kids will be in the restaurant? How much noise will I have to deal with?.....
On an on the questions ramp up in my mind, which does nothing but lead to more questions and more stress.
All because my wife suggested we go out and eat. I hope I am getting my point across. We cannot be made or helped to remember something.
I know it's your way of trying to help us, help you. But we just can't do it. As I have said for years now and I understand people get tired of hearing it, but "It is the disease. It's always the disease."...

Memory People Community Support Groups Interview with Rick Phelps

Here is an article that was done recently that talks about our Memory People Community Support Groups™.
Thank you Leonard Hayhurst for doing such an good job with the interviewand writing about what we are accomplishing.

Sunday, January 25, 2015

Drs. Need To Educate Dementia Patients

One of the questions I hear when doing speaking engagements or just doing interviews is that a loved one was just diagnosed, and what do we do? 
The thing I always think of when asked this, is someone isn't doing their job and that always points directly to their doctor, or their neurologists. 
The very thing they are asking me, days or weeks after their loved one is being diagnosed tells me and that there is indeed a lack of communication going on between the family, the patient, and the doctor. 
When someone is first diagnosed there are many unanswered questions. That in itself is troubling. It shouldn't ever happen, but it does happen and it happens over and over again.
A family who's loved one has just been diagnosed should never ever leave that exam room until they have information, phone numbers, pamphlets, and facts about dementia.
When I am asked by people what to do, that tells me how bad it is getting info on this disease at the time of diagnosis. If you are diagnosed with breast cancer, or heart disease, you understand and are told where to go, what procedures are going to be done and so on before you even leave the doctors office or hospital.
If you are diagnosed with dementia, you are basically told that it's a terminal disease, it is a progressing disease, to which there is no cure. In other words, the most devastating thing you have ever been told, and yet given no information.
This is absolutely unacceptable. There is all kinds of information that can be given to the patient and the family at the time of diagnosis. Why isn't it? 
That is the million dollar question. Is it because the doctor doesn't know what to say, or perhaps they just don't want to take the time, or perhaps they are clueless when it indeed comes to dementia. 
Either way, it's unacceptable yet this goes on everywhere in the world all the time. There are questions people want answers to. Some of these questions there simply are no answers. 
I get that. But tell the patient and the family that. Don't just shake their hand and tell them to have a nice day. 
In my book, "While I Still Can..." the very first chapter talks about this and I titled it "Seventeen Minutes".
That is exactly the time it took from the minute we walked into the neurologists office, filled out the paper work, was seen by the doctor, and was then was standing at the elevator. 
Seventeen minutes. To be told I had a terminal disease, gave me a prescription of Exelon patches and we were on our way. We didn't know what to expect the patches would do, or anything about Early On-Set Alzheimers Disease until days later when I contacted the Alzheimer Association and they made an appointment to come to our house with three days.
We were one of the lucky ones. I had always researched things before my diagnosis. I rarely took anything for face value. Anything from taking trips, to making a purchase, to what kind of printer is best for my computer. 
Research. That's what I did. And I didn't believe the very first thing I read when I Googled something. This is where common sense comes in. There are literally millions of sites on the internet that deals with every kind of dementia you can think of. Even some you never heard of. 
The thing is you have to decipher which ones are legitimate and which ones are not. And you have to be computer savvy enough to realize this.
Think of how many people can't turn on a computer, let alone get to a web page about dementia via Google, or some other search engine. 
They simply don't understand how computers work, and would never be able to tell the difference between a page that is all about coconut oils and eating bread to ward off dementia from the sites that actually do have good solid medical advice. 
The breakdown indeed here lays right at the feet of the physicians. There is no excuse for anyone leaving a doctors office after a consultation about this devastating diagnosis and not being given the tools they need to learn more. 
Yet it happens. Everyday, thousands of times a day someone is diagnosed with some form of dementia and they are given not one bit of information. 
It's sad, but it is indeed the world we live in. How can we expect to stay away from stress, make financial arrangements, long term health care decisions, or any of this if not given the proper answers in the very beginning?
We can't and millions of people are dealing with this and haven't a clue as what to do next....

Friday, January 23, 2015

Placement ,Census and Staff Ratio

One of the most important things to ask, yet one of the most overlooked things when looking for a facility for your loved one is:
What is the ratio of aids and or nurses to patients? In other words, how many patients at any given time does the person who is caring for your loved one, also have to care for?
Six? Eight? Ten? More? Chances are what ever ratio they give you will be a little white lie anyways. 
Facilities are in the business of making money. That's the long and short of it. They will do what is needed. If that means they usually have one nurse and two aids for say twenty some patients and one calls off, in most cases they will pull someone from some other part of the facility or go with what they have.
I have seen the ratio as high as one aid to twelve patients. There is no way this is expectable. But it happens. How many times we say "Life happens"?
Well, so do call offs, employees just walking out, etc. We have a local facility here, not three miles from our house and one day they cleaned house.
When they were through, over ten employees who started that day, didn't have a job at the end of it. It's called census. Census is the number of employees versus the number of residences. 
If the census is down, meaning there are less patients because of death, or whatever, they will lay off, or in this case you simply didn't have a job.
What happens then is, as the census goes up once again, they don't hire back the ones the aids and nurses they had as they should. 
They will rearrange the facility so as in a certain wing there may be fourteen patients, and two aids taking care of them. This is fine. And works in most cases. 
What happens is that when the census increases, as more patients are added, the number of employees isn't. Until the census is back to where it is profitable to hire more employees. 
This is why you will see,"hiring" signs in front of facilities all the time. Having ten years senority is nothing when it comes to working at one of these facilities.
Of those who lost their jobs here locally that day, one of them had over twenty years in as a nurse, and was let go. I know this because it was indeed my cousin.
So, do your homework. Ask the families who are there visiting how many nurses or aids are taking care of their loved one at any given time. You may even be able to ask the employees. 
This is a huge problem that plagues every facility, everywhere. Census. The bottom line is profit. And those who pay are always the residences, or the employees who are fired on account of the census being down. 
Here's the thing, if at any one time a employee no matter if they are a nurse, or an aid, if they have say ten or more patients to care for...someone isn't getting the care they need. 
They have to be eating cold food. No one is watching them while they eat or feeding them. They simply can't be. Let alone watching them for outbursts, abusive behavior, or choking. Or taking their medications properly.
I have seen dinning rooms where there are up to twenty residences eating, or trying to with one or two aids being the only ones in the dinning room trying to feed them, watch they don't choke, etc.
It doesn't work. Yet it's done all them time. If you ask, many times the families who come to visit are indeed the ones taking care of their loved one, instead of visiting.
So be diligent. Pay attention. And if there is a ratio of aids to nurses that isn't safe for your loved one, by all means say something to the administrator.
Telling the gal or guy who is working with your loved one won't help a thing. They already know it and they don't like it any better than you do.
This is a huge problem in all facilities. Census. And believe you me, the facility isn't in business to lose money. They have to keep the lights on, and make payroll. So someone suffers. Nine times out of ten, sadly it is the residences of these facilities.

Monday, January 19, 2015

Growing Older

Here is a posting that I had done a few months ago. I thought I would share it again for those who may not have seen it:
Getting older. I look around and all of sudden I am in my sixties. How is this possible? Early sixties, but sixties no less.
I can tell you getting older has it's perks. Everyone worries about you, about your health, about your well being.
You no longer have to carry anything that has any weight to it. This includes just about everything. If it has any weight to it, your off the hook.
You will get calls all the time asking how you are doing. There will be calls made that you are the subject of those calls. Again, because of your age.
All of this is good thing. I don't know when you actually become old. There is a certain age, I am sure of it. And that age, increases as you in fact get older.
I remember thinking when I was in my twenties, I looked at people in their sixties and older as ancient.
This age thing does indeed creep up on you. I still am very active. I pay for that. But I keep active physically. Mentally, well, not so much.
I remember sitting in the Gay 90's or the 21 club. Bar hopping from place to place every weekend. I remember the Plaza Inn before it was Mickey's. Before they expansion and it became way to big for me.
I remember going to the Sand Pebble every Sunday night to listen to Johhny Reagan play. Back then he was in my opinion one of the best guitarists around here.
The thing to do in Coshocton was to drive up and down Main Street, over and over and over. You would wave at the same person you just waved at ten minutes ago.
I remember spending hours upon hours in the Hickory Pool room. Honing my skills, just to get into a game of nine ball in a bar somewhere for money.
I remember trading three guitars for a car. I was fifteen at the time. Who on earth does that? I couldn't even take it home. We parked it on the street for weeks until the people caught on.
I remember one of my best friends, Dan Mitchell and I were dating two gals that were tied to a local church here. We were invited on a hay ride, to play some tunes and and have some fun.
We both decided to wear shorts. That was a huge no no. The church did not believe in shorts, makeup, movie theaters, bowling, dancing, or just about anything else.
We wrote a song together about that adventure, "I love my shorts" never did make the top ten, but it was a dandy no less.
I remember having a few too many one night. leaving another good friend of mines house, Bob Wright, and somehow hitting a boat on my way home. Again, how does that happen.
I remember too many mornings waking up and not knowing where my car was or how I got home. I remember then getting into law enforcement and EMS, which probably for all intense and purposes saved my life.
I remember meeting the love of my life, Phyllis June. I remember telling my wife at the time, I was going to marry her. Again, who does that? I remember our first date. what Phyllis had on, where we went.
I remember my last time in a bar. Three years ago in Nashville, Tenn. Legends. A well known hang out for up an coming stars in the Nashville circuit.
I remember getting diagnosed with Alzheimers Disease at the age of 57. I remember a lot of things. But I can't tell you for the life of me what I did yesterday.
When you have this disease, your short term memory goes first. Then you begin to lose your long term memory as well.
When asked "How are you"? I always reply "I am blessed". That is because I am and I have been. I have done some really foolish things along the way. But as I said getting older has it's perks, one of them being you learn that you never were invincible.
You learn that you made mistakes along the way. And you learn most importantly that all these mistakes can be forgiven. I am indeed blessed. One day I won't know this, but I do today.
And that's all that matters.

Friday, January 16, 2015

What It Takes To Start MP Support Groups

Let me make this perfectly clear. We didn't win that contest. However we did go from way down to number four. And no one let anyone down. Just to garner the votes we did in a short period of time was great.
Here's the deal, we're here to bring awareness and support, not to win contests. Contests are nice, and winning is also nice. But we won along time ago, when each of you made this site what it is today.
If it was meant to be, it would have happened. Sure the money would have been great and it would have started up two more Memory People Community Support Groups™, but we will get there. 
I don't want anyone to feel they have to donate anything to be here and get the support we offer.
But the simple truth is, it takes money. I remember when I first started Mp, I vowed we would not take a single dime from any of our members, ever.
Well, I was wrong. I learned to do what we wanted to do, to have the money for our support cards we offer, to have the money to keep our web sight up, and most important to have the money to start our support groups across this nation does indeed take money.
Many will say, "You can start a support group for nothing. Why would it cost anything?"
Those who think like this, really don't have any idea about what it takes to set up a support group. First off, we just don't and won't get anyone to facilitate these groups. 
Second we have a training manual that we insist our facilitators go by. It isn't rocket science but it does outline the do's and don'ts about what we do in a support group.
You have to set these support groups up right the first time. There is no second chance. We are dealing with peoples emotions and lives in some cases and you simply have to do it right.
This means every facilitator has to have the proper equipment to do these support groups and to be able to have video conferences with Leeanne and I when and if necessary.
You have to have internet, and internet fast enough to do video conferencing. You have to have a cell phone. You have to have a printer. And you of course have to have a laptop.
That is just the beginning. It takes money to get our facilitator manual done. And we have to have insurance, money in place in case there is a cost for the meeting place. And we have to be sure we have the monies in place that will allow every support group we start to be sustained year after year.
We just don't throw this together, and see what works. This has been an work in progress for over two years now. We don't do things haphazardly.
And that is just a sample of what it costs to start up a Memory People Community Support Group. We are an internet based Corporation so communication is a must.
Now, how to we do this, you ask? By donations of course. And I would like to thank those of you who have given. There are some that donate once a month regularly, there are others that donate one time, there are some that donate in Memory of their loved one.
The thing is it is very easy to donate. But most important, we want to get back to Support here. The contest was fun, but now it's back to business as normal.
I am always fearful when someone comes to Mp for the very first time and sees posts about a contest, or donations that we are not giving them that first impression that we want.
We are an Awareness and Support site. So, it you can donate and if you want to donate, simply follow the link posted below.
About every two weeks or so we post this link for the new members who have joined us and may want to donate. As much as donations as needed, we need to get back to support.
If you have a extra few bucks, by all means we will gladly except it. Some have donated as little as a dollar, some five dollars, some hundreds of dollars and up.
And every donation is used for moving forward with our Mp Support Groups.
No one let anyone down. I could not be prouder of the job that each of you do here daily, sharing your stories and supporting one another. That is what it's all about.
We have already won something much more important than that contest or any other contest. We have won every time someone posts about something and that post helps another member, or everyone here.
We will move forward, and we will succeed. It just takes time. But Mp is always first and foremost in our minds. Mp will never take a back seat to our Support Groups.
Both are essential and we will always do our very best to help you, the patient, the caregiver, and the advocate to get through one more day...because tomorrow is another and we start all over again.
Here is the link to our paypal site where it takes a couple of clicks to donate. Easy peasy.
If you are not comfortable using paypal, you can send your check directly to:
Memory People, Inc.
c/o People's Bank
P.O. Box 1000
Coshocton, Ohio 43812

Thursday, January 15, 2015

Do We Need This Type Of Awarenes?

"Still Alice"....the movie soon to be released, that is going to bring all kinds of awareness to dementia.
No it's not. This happens all the time. "I learned so much from the film" Right. What everyone needs to realize the very premise of "Still Alice" is fiction.
Lias Genova made the character and the story up. Don't get me wrong, it has brought awareness to this horrible disease. 
But the truth is, this movie, just like any other movie or book is nothing more than a flash in the pan.
Meaning, six weeks or less after the movie premiers, everything will be the same, the talk and scuttle butt over the movie will long be gone and we won't be one bit further along than we were ten years ago.
I am glad whoever it was, brought the book to the big screen. But it isn't going to do what most think it will. Nothing has yet, and this will be no different.
You will not see anywhere in this movie where they are discussing a family losing their home, their life savings. Having to sell off their bonds. Wondering how she can place him, lose their home and then where shall she live.
I may sound a bit negative, but this is indeed how things like this work. Someone very famous does something in whatever capacity, and there is all this great wave of thinking that this is going to be the thing that indeed brings awareness to the disease.
Not only will this not happen, but once again, the book and movie portray how this disease effects a family unlike your low income to medium family.
As if this disease doesn't strike the man who is unemployed, the mother who has bills piling up, and no where to turn. The struggles we see right here on Mp, you will never see on the big screen and that is exactly what should be portrayed.
I remember when Seth Rogen spoke in front of Congress. Testified if you will, about the difficulties of Alzheimers. This too was supposed to bring all kinds of awareness.
It of course did not. What did happen was Mr. Rogen got his fifteen minutes of fame in front of three Congressman. He did what I would consider a stand up routine.
All this did was show, at that time anyways, he was not serious about this disease at all. Once again, I am glad Rogan did what he did, I was disappointed in the seriousness of the situation, where he was, and the topic.
Here is the video of him testifying. Lots of laughs. I wish Mr Rogen would see some of our posts here on Mp. Their a riot also.
Read our posts about the wife who has watched her husband of 60 years slip away from her a little at time. How he can't communicate, has lost all control of his bodily functions.
How he is verbally and yes sometimes physically abusive to her. How he doesn't know their own grand kids any longer and don't even want them in their home.
How she talks to him, tries to comfort him and gets no response and hasn't for over ten years. How she has struggled with the finances since day one of his diagnosis. To which he could care less, he hasn't thought about a bill or any payment in years.
How she cries herself to sleep, only to get at most three hours a night and none of those hours are ever continuous. How she listens to him scream out in the middle of the night in terror, and not being able to do one thing about it.
Or how their kids are not even speaking to one another and haven't for three years, all because none of them can agree on what Mom should do with Dad, yet none of them have ever come forward to offer help in anyway.
Other than call once a week, if that. And then it ends up in an argument because again she is not doing anything right. "Place him and get it over with" is what they tell her.
I wish this would have been talked about in front of Congress. Instead he used his time to plug one of his movies, "Knocked Up"...I tell you, when a patient see's such display from someone who is deemed an "expert" from God knows who, but when I watch this video it indeed makes me sick to my stomach.
I wish things like "Still Alice" or Mr Rogen did make a difference, did bring awareness. But the truth is what little awareness they do bring, do we really need that kind of awareness?
Do we???