Wednesday, January 14, 2015

Tribune Interviews Rick For Mp Support Groups

Last night a reporter from the Tribune was here to do an interview about our Memory People Community Support Groups we are starting. He as here for about an hour and forty five minutes. 
We had our first official meeting with our local one a week ago yesterday and the Tribune had been chomping at the bit to do a story on these. 
What was supposed to be a meeting with us and the Administration at Autumn Health Care, turned out to indeed by an impromptu support group meeting.
What was supposed to last about thirty minutes, lasted over two and half hours. There were seven people there two of which were staff. The rest were Phyllis June and I and caregivers. 
And what happened is exactly what happens here. We talked. Many questions were asked about the two of us, where I am with this disease, how we are handling it, what we do on a daily basis and so on.
They wanted answers. Everyone always wants answers. And when you sit in one of these support groups and explain that many times there are no answers, it's okay. 
We didn't tell them what they wanted to hear, we told them what they needed to hear. We didn't talk of cures, we didn't talk of slowing the progression. 
We have devised a two page handout that indeeds explains about Mp and some frequently asked questions. And two of them are we don't talk about cures and there is nothing that will slow the progression as of today. 
We talked about one caregivers Mothers ability to know what the daughter is saying, even though she can no longer communicate. I of course didn't have an answer for this, I did tell here that I believe that just because anyone loses the ability to communicate, that doesn't mean that the person doesn't understand what is being said. 
They just don't have the ability to answer, or respond. You could see the stress leave her face almost immediately. For who knows how long she has believed for whatever reason that her Mother could not understand what she was saying.
Just telling here that she could indeed, and should keep talking to her and interacting with her is the vital thing to do. This and many other things were discussed.
We had our support group meeting like I said for about two and half hours, and one person even waited at the door for us and we talked with them outside for another fifteen minutes or so.
Once you get someone talking and they realize that they are not alone, these support groups virtually run themselves. I am the facilitator, but being a facilitator does not mean you run the support group.
These support groups just like here run themselves. Of course we have Administrators here, beings we are an online support group, but in these Memory People Support Groups, the people there are indeed the facilitators if you will.
I will post the article that the Tribune did when they publish it either the end of this week or the first of next. Support & Awareness. And no one does it better.
Our Memory People Support Groups will indeed put a whole new meaning on the term Support. What we do is not done in most support groups. We didn't read to them, we didn't show slides or power points.
We talked. We listened. And we were one. As it should be. Helping each other understand this disease, and instead of putting a smiley face on and telling them it will be alright, we told them nothing about this disease is alright and never will be.
We have each other and family and friends for support. Getting through today and then tomorrow is what is important. The cure for this horrible disease will come someday, but what we need now is to get through today.
And what we are doing isn't solving anything, but it does make this nightmare a little bit easier when we share and support one another...