When you first join Mp, or even if you have been here since the beginning, some of our posts, discussions, etc. can be overwhelming. As a patient, family member, or caregiver it can be difficult to read some comments.
I think this has to do with the reality of the disease. We never sugar coat anything here. Dementia is not something one can sugar coat.
When someone tells me "It will be ok..." I always say, "No it won't. There is nothing about this disease that will ever be ok."
And that is the truth. If someone around you or you read somewhere that the progression of this disease can be slowed by anything, that is false.
If you hear, or read that there is medication that will indeed stop the symptoms of this disease, that too is false.
There is medication that may lesson the symptoms, but there is no medication that will slow the progression, or stop the symptoms. Some medications may lesson the symptoms, but there is no mediation that will stop the symptoms.
With a few clicks of your mouse, you can find all kinds of information about dementia on the internet. Everything posted on the internet about dementia is certainly not correct.
It is up to you to decipher what is false, and what is not. Here, at Mp you do not have to do that. We don't allow false hope. We do allow Hope of course.
Take a cure for instance. You can find numerous sites on the internet that talk about a cure for dementia. And I believe wholeheartedly there will be a cure one day.
The problem is that day is not here. That day is not even close. There will not be a cure in my lifetime, I have made peace with that long ago.
If there were a cure found today, it would take years, if not decades to get through the FDA and end up on your Doctor's prescription pad.
And like cancer, whatever cure is found will be astronomical to even get. If it comes in some sort of treatment, those treatments will run tens of thousands of dollars.
And we all know what a debacle our health care system is right now. So will it be covered under your current plan? Who knows? No one knows, that's who.
These are just a couple of things here at Mp that we talk about that is very difficult to read. Everyone wants a cure. Most organizations, take the Alzheimer Association for example are about research.
They are 90% about research, finding a cure, and perhaps 10% about support. Which is fine. Many are like this. Put all their resources, i.e.: funding, donations, monies raised from their walks into research and administrative costs.
We simply don't do that. We are 100% about Support. We want to help you get through today, this evening, this afternoon, or even this morning.
When you have this disease, truth is you want to just get through today. Instead of worrying or wondering what is coming next week, next month or next year.
Take one day at a time. Everyone knows the horror that goes with this disease. The simple truth is there are medications that may lesson the symptoms, but there is nothing that will slow the progression or cure this disease as of right now.
And of course this is difficult to read about. Of course when you read some of our posts they are devastating. Why? Because we deal in reality. We deal in the here and now.
To think you are in the midst of placing your loved one in a facility and your caregiving roll stops...it doesn't. That's when it begins. You know not only worry about how your loved one is reacting the their new surroundings, but you have to constantly worry and check that the care they are getting is what they deserve.
There is not one good thing about this disease. There just isn't. You will have days, or hours, even minutes where your loved one may be "normal". But they are fleeting moments and the occur less and less as this disease progresses.
Be with your loved one. Do what you can to make them, Safe, Content, and Pain Free.
And if you come to a post here on Mp, that is just too hard to read, because of the content, or what that member is going through, that is when you need to tell them you are here for them.
You understand what they are going through, you are walking the same road with them. You care, your thoughts and prayers are with them. Just anything to let that person know they are not alone.
Sharing our experiences is how we learn here. Not to do so and we become just another FB site. I have always said that will not happen here.
What we do is too important to become just another FB page. We are much more than that, but until we get the funding to get off of FB and get our own web page, we have to put up with the way they do things.
Setting up our own web page has been a priority of ours for a long time now. It will take thousands of dollars to make this happen, and thousands more to keep it running.
We have to get a web master, we have to have our own servers, and on and on. For now, this is the forum we have and have to deal with.
Just know this, everything you read here, as difficult as it is, is honest, and truthful. You won't get someone just posting about this or that cause it works for them.
We don't allow that. What we do is Support. We don't promote any other sites, or products. We are no ones personal billboard. We do Support one another, and we do it better than anyone, anywhere on the internet.
And once we start our local support groups in a city near you, these will be ran the very same way we bring Support here. No fluff, no sugar coating, no false hope. That doesn't do anyone any good.
The posts we have here are sometimes difficult. But that is the reality of the disease. To tell someone it will be "ok", is the easy way out. It won't be "ok", nothing about this dementia is "ok", and it never will be...