about the caregivers forum
 

I have visited that site several times and while I am married to a PWP, I would much prefer being with everyone here because that forum is too sad and depressing. I felt worse (if that were possible) than when I visit this one. I stopped going there. So what do I do? I bring all my sadness as a caregiver (or whatever you wanto to call it), that I find over there and I bring it here. Sorry about that. I feel the same wasy as all those people who are trying to help their PWP, but I believe that the people here who are dealing with the cards they've been dealt are doing a much better job of it. It seems that most of the people here who are suffering with this disease are in a better place mentally than the people who are getting support on the caregiver site. I know my husband, Rich, is not in a good place mentally and the physical goes without saying. I can't get him to visit any sites or reach out to anyone who he might be able to connect with. So I have been doing the lurking and searching until one day I felt the need to speak to you and in my own way cheer you all on. If I go there, I get worse, when I come here I feel a bit better. Thanks to Steffi, Carolyn, Steve, Chris, Thelma, Paula, and all the rest of you (my minds gone blank for remembering everyone's names), you are true heroes and inspiring and the humor and grace you share with each other is essential in this battle we go through in life. Thanks for letting me ramble, Maureen

Absolutely agree with you, Maureen
 

Your post related to the Caregivers' Forum reflects, precisely, the reason that I am here and not there...just too much sadness. While I was posting, there, I DID attempt in some small way to address this sadness but, in so doing, I was "ingesting" the sadness and I could no longer continue my attempts to help at the expense of my own well-being. I'm not sure if you are referring to the same Caregivers' Forum, i.e., "OUR PLACE"...a Yahoo site...but that's probably inconsequential. I would imagine that any caregivers' forum would be essentially the same. I actually did post a message there the other day...titled it "An Invitation"...an invitation to anyone there who might be able to benefit from being at this forum as I have benefitted. In my "invitation", I tried to be very tactful about my words so that I would not offend the people at that forum...explaining that, indeed, it was a place where a caregiver could and would get so much support from the caring people there..but, that it might be of value to come to this forum to be able to view things from a different perspective. Someone here...I believe it was Thelma...had suggested that bringing the caregiver here might be a first step in getting the pwp to follow...to discover that he/she could relate to other pwp's...possibly even "latch onto" a specific person with similarities being experienced with this disease...that it is often difficult for pwp's to "jump into" a forum like this...but that they could at first "visit" to become acquainted with this forum and its people...to see if, in fact, it could have any value for them. I did receive a very nice reply from someone at the Caregiver's Forum...haven't checked recently to see if there are more...so, we just may have some "lurkers" at first...and who knows...perhaps some will ultimately become interested enough to join. I explained at the CF that I realized that many of their pwp's were beyond a forum like this, but for some that may not be...especially for the newly diagnosed...it just might be a good place for them to be.

Well...I certainly have "rattled on" here, Maureen...really only intended this to be an affirmation of what you posted. Thanks for your response...and I do hope that this will be a place for you that brings the support and comfort that you need. It seems that you are already feeling the wonderful caring, comfort and support of the people, here.

Therese

Thanks Therese
 

You have a much better way of expressing your opinions and thoughts than I do. I hope we can keep up our strength and our humor. I was just visiting the Open Forum at the NPF site and they are a great group of PWP as well. Do you ever visit there? I am particularly interested in the apathy/depression discussion they are having right now, as well as the stifness of the neck and torso, etc. that they are dealing with. I know my husband, Rich, was diagnosed in '05 and he is suffering from all of that, and of course, a whole lot more. It does seem impossible at this juncture in time to do much for the apathy. Who am I kidding, they can't seem to do much for every issue w/out impacting something else. What a crappy designer disease this is. Some are saying that PWP should not take any antidepressants. Well, what does one do? It's bad enough w/the antidepressant. I don't know, the more I read the more confused and disillusioned I become. The more doctors I talk to, the more opinions I get.
Yesterday, Rich was forced to take early retirement - 2 years away from his full pension. Yesterday was a difficult day for us both, and today will be much the same. Unfortunately, it's a whopper of a monetary difference, but that's life. We have to find some way to make this all work.
But, of course, I digress. I'm real good at that, not much at anything else these days.
Good Luck, Therese, to all of us, those that care and the people receiving the care.
Kindly, Maureen

Well...
 

...how about someone from here...go there.

x

Thank you, Maureen
 

Maureen...do not underestimate your own abilities...your write thoughtfully and well.

I haven't visited the Open Forum at the NPF site, but will certainly do that...and, indeed...your description/definition of this disease, i.e., "crappy designer disease" is right "on mark".

...and yes...sometimes...many times...the more we read, and the more doctors we visit...the more confused and overwhelmed we become...just too much information to absorb.

I can only imagine how difficult yesterday was...how difficult today will be for both you and Rich...one can only really understand when one has experienced...but I CAN imagine. Change of any kind can be difficult...retirement is very often a change that is very difficult...the end of a particular stage of life...and all this...coupled with the changes that this PD journey inflicts on us can only compound our lives. However, let me say this, Maureen. I have read your posts...and I seem to have detected already that you have a strong character that will absolutely NOT allow you to "give up"...and no one, here, will allow that, either! AND...stop putting yourself down...that's the "first order of the day". I say this in reference to your own words: "...not much good at anything else these days". I see this as a reflection of what you are presently experiencing...yesterday's and today's particular difficulties...not something that will permanently "damage" your courage and strength.

Thank you for the information about the Open Forum at NPF. Please keep in touch...if you choose to exchange e-mail addresses, I would be happy to do that.

Therese

Steffi
 

I'm using this thread to make you aware that I just replied to you pm related to the Caregivers' Forum, etc. I am still uncertain as to whether or not you receive my pm's...just looked, now, and it still states that there is no one with that ID and it still state, too, that your pm to me is UNREAD which is not the case...so, here I am still struggling with that issue! Would that all our "issues" be so simple!!!

Therese

I like the term "crappy designer disease". May I use it sometimes?

I do think it is harder on the carepartner. With every loss, and apathy rates right up there as one of the most significant, more responsibility and worry falls to the partner.

As Brenda, from PLWP used to always say, "The carepartner is with us by choice. Pwp have no choice but to live with it; carepartners do. They need support just as much."

paula

therese

try totaly logging out. it will clear all cookies.

if you have anyother problems. please pm me.

Therese
 

Firstly my apologies for using this thread to send a message to someone but it is the only means I can say to you Therese..I received about 3 of your pm`s but certainly not this last one,which would I think be most important and I don`t know how many others you have sent which haven`t reached me.,

Can one of the moderators throw light on why I am not being recognised by my forum name.Perhaps I have made a cock up in my first registration somewhere...a,lthough other people`s pm`s are getting through.
Therese...if you click under my name on ANY post a drop down menu should appear,with options..one of which says "send a pm to this person"
You could try that method.
I also,it seems...do not always register as being on line.

:eek: Am I really here? Am I in an out of body experience? Am I a ghost?
WHOA...THIS IS SPOOKY.:confused:
SORRY ABOUT THE MESS THERESE.

X

all pm's sent by clicking on your name will get to you steffi.

the glitch can come when somebody ( not saying you terese ) does a typo. this can happen if a space is part of the name..or an underscore. or even if zero's are used instead of o's.

the best way to send a pm is to click on the name and use the pop down menu.

not showing up online ( green light on ) can happen if you log off then back on. it can even show you online still when you are not for a little while.

also be sure you have not checked the box so you are hidden. btw...you are showing online...your green light is showing.

send me a pm anytime steffi. we can test things out. believe me...the mods and admin do LOTS of animal testing on me. :D