Wednesday, January 22, 2014

What I do on Memory People, give advice from a patient's perspective

I need to post something. About what we do here, and more precisely what I do here.

Unless you been living under a rock, everyone knows I am a patient. And everyone knows I have at times been very blunt.

Never once have I, or would I say anything to intentionally hurt anyone or anything of that nature.

Here on Mp we deal with a very difficult thing. Dementia. All kinds. Alzheimer's being the most prevalent. But we have Lewy Body, Vascular, Early On-Set, and on and on.

What we do here is post our experiences. The good, the bad, and the ugly. And what we have done since the beginning is never sugar coat anything.

When I say "There is no cure for this disease, there is nothing that slows the progression, and there is no fix" I am not just saying that to be saying something.

It is indeed true. Sometimes this alone is very hard to hear. We have many members who families are in denial. That too creates a huge problem.

We have members who do the very best they can, and someone in their family always knows better. We have people who post about things that are happening and wanting advice.

The problem is it may not be the the advice they are wanting to hear. And that is fine. No one has to take anything I say as gospel.

What I say, what I tell you, what I go through is just me and me alone. I never tell someone, "Well, this works for me, I am sure it will for your loved one."

That doesn't work, and never will. We offer advice. Advice you will get from a whole host of people. From caregivers, to patients, to people who have lost their loved ones to this disease already.

No one has all the answers. But know this, the sooner you come to grips with this disease and accept it, the better off you and the patient will be.

If you go day after day trying to "fix" this thing we call dementia you have already lost. All you can do is improvise and deal with what is happening right now, today, this minute at times.

If I am blunt at times, its only because I have this disease and sometimes I don't always come across apathetic. I am, trust me. It's just if you ask a question here on Mp or you are wanting advice I will do my best to tell you from a patients perspective.

Which in my mind is the very best info one can get. If I stand in a garage that doesn't make me a mechanic.

I indeed tell you from a patients perspective. No one need listen or take what I say for advice. We all can make our own choices.

I certainly don't want any of you thinking that if you post something here your situation isn't important.

What happens is the suggestions you get or the advice that is handed out by my or anyone else may not be what you are wanting to hear...and that indeed is something no one can help you with.

I hope you understand what I am trying to say. And please don't take this personal or think I am pointing fingers at anyone. This is just what we do here.

Other sites will sometime tell the patient or caregiver how what they are doing is so noble, or they they are sorry for what they are going through.

We do that here also, but most of all we offer Support. And sometimes that Support is not what one wants to hear...you ask for help here you are going to get it.

Whether you act on it is up to you the caregiver, family member, or patient...