Would Appreciate Your Input
 

It has occurred to me that this forum could be a good place for the spouses of the women at the Caregiver's Forum (predominantly women at this forum). So many of these women have said that their husbands feel that their wives (their caregivers) do NOT understand what they are experiencing...how they are suffering, etc...and, of course, this is a reality. No one really understands until/unless one experiences...one can only imagine. These women are constantly struggling with this particular issue in addition to the many physical/emotional aspects of the disease. It would seem to me, then, that a possible solution would be for them to attempt to guide/direct their pwp's to a place like this...a place where they could relate to others afflicted w/PD...a place to discover that they are NOT alone w/this experience and where they would know that ABSOLUTELY, you all would understand which, in itself, might bring them at least a degree of "comfort". There is always the possibility (probability), too, that much could be learned about the physical/medical aspects, i.e., symptoms and medications to treat these symptoms...and personal coping skills, too. When I read the caregivers' "posts", it is heartbreaking. They so much want to help their pwp's and are at a loss as to how to do this. I tend to agree with others who have said that the "carers" suffer as much as their pwp's...perhaps, even more because of their inability to do what's best for someone they love. They just feel so helpless. It seems, too, that most of their pwp's are very reluctant to join support groups. In fact, my pwp's neurologist advised that she not join a support group. Certainly, NeuroTalk IS a support group, but I do not equate it with the term "per se" so that it seems to me that this place could offer needed support without its being in a support group setting which just might be more "appealing". I don't know if I'm going in the right direction with all this, but I just feel the need to help these people so much. Perhaps I should ask two questions of you to give me a better idea as to the value of my approaching the caregivers and suggesting this route to them: How did YOU arrive at this place? How best could these "carers" encourage their pwp's to come to this place? Maybe I need to know the answers to these questions before I embark on what might be a worthless, valueless "journey", i.e., approaching the caregivers with my idea.
I would appreciate and I thank you for any input you may feel you would like to share with me.

Therese

therese,

There have been many caregivers here; some regular participants for years. The first thing I thought of after reading your post, is that the persons you talk to need to be comfortable on the computer. Other than that, hopefully other caregivers here will post. All are welcome of course.

good luck,
paula

Firstly
 

I hate the term caregiver.as it denotes a one way relationship.However ill he becomes my husband will care for me and I will care for him.It is a two way relationship.Perhaps further down the line I will be in the situation of other partners of Pwp and I will have to be more supportive in a physical way.
At present my husband would not join a support group whatever form it took.He accepts fully that he has Parkinson's but wants to concentrate on what he can still do while he can do it and time is limited.I am the one who does all the researching and contacting PwP.Perhaps, that is because I am a worrier or perhaps it is because I believe that knowledge is power.I have spent a lifetime finding out about things that affect or interest me. He knows that if anything of interest crops up I will tell him.I have found this site a wonderful help as it not only gives me hope:the wonderful fighting spirit of you all, but provides information.

I am struggling with the idea
 

I am struggling with the idea of a person knowing how another person feels:empathising rather than sympathising.Can ,even if we have the same problem,walk in another man's shoes? When somebody says "you do not know how I feel" what are they really saying?

Caregiver vs. carepartner
 

Thank you, Paula and English Country Dancer. You probably have noted when I refer to my pwp and to me...I use the term, "carepartner"...because I, too, view this as a shared team effort. It's just that those at the Caregivers' Forum refer to themselves as "caregivers" so that I simply referred to them as such...much prefer "carepartner".

Thanks, again...and for any others who would care to respond to my post, I would appreciate that....

Therese

Back to English Country Dancer
 

I just re-read your post wherein you asked: "When somebody says 'you don't know how I feel'...what are they saying, you asked. I think that they're saying: "You cannot come into my PARTICULAR BEING and know my PARTICULAR FEELING...you can empathize...you can know some of what I am feeling...but, you cannot become a part of my particular being and, therefore, cannot know exactly how I am feeling. Thanks, again, for your input, ECD....

Therese

what a lovely idea Therese
 

If just one person gains help and comfort by being here then it will be worth while.This can be a lonely and frightening journey for all concerned as there is so much daily adjusting to do.You turn one corner,and are faced with yet another.You forever seem to be searching for respite in a straight path for a while but it doesn`t seem to come.
I realise the danger of learning too much,but sometimes it is as bad to know too little...and surmise.The road ahead may become less fearful if you read how we all get different things at different stages.It`s not liuke after 2 years you will lose your mobility..at 5 years you will drool.None of it is set in stone.
Here too,we also have a laugh which can raise the spirits a little.

English Country dancer.What a valid point..that how do we know what another person is feeling.I don`t believe we can.We have all suffered grief and loss...but because I have lost my parents..it doesn`t mean that I know what another persons hurt is like when it happens to them
I think all we can do is to say if you have experienced similar;
"I have SOME idea of what you are going through...and I uinderstan d."
or if it is a remote experience...it pays to be honest and say
"I have absolutely no idea how you must be feeling but I care enough to be here for you..listen to you..."

You carers have a tough job.I take my hat off to you.
love
steff
x

Thank You, again
 

Thanks to all who responded to my request for input related to trying to "bring" at least some of the caregivers' spouses to this forum. Your responses seem to validate my pursuing this. I am still "open" to and would appreciate any other responses.

...and Steffi...a good point...there IS laughter here, too. Sadly, I can't say that about the Caregivers' Forum.

Therese

Perhaps there is a way to do this but it will be difficult to get the PWP to come here if they dont want to come. But you could ask the caregivers to come over and see for themselves and through their postings try and help them find someone who is much like the person they want to help.

It appears to me that many who lurk just seem to be waiting till they find someone to relate to. It must be very difficult to come on right out of the blue.

Tell them come on over we need to work this out with them for the benefit of their loved one be it male or female.

Then the membeers can take it from there and who knows maybe that connection will post and then it will be a go.

All we can do is try.

Excellent reply, Thelma
 

I just read your response to my request for input about pwp's and their "carers"...trying to get them to come to this forum. It is so true...very difficult for a pwp to "jump into" something like this...BUT, if there is some way to get the "carers" here...to see for themselves the value of this forum...and, even as you suggested, possibly find someone very much like the person they're trying to help...and conveying this to the pwp to try to pique enough interest to at least stir some curiosity in their pwp to come here...I think that's an excellent idea...excellent in that the pwp just might find even one person with whom he/she can connect/relate. I think this is a real "key"to having the pwp feel more comfortable being here.
Thank you so much, Thelma...you have given me wonderful suggestions, and I so appreciate your response.

Therese

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

Thank you
 

Thank you for checking I exist lol :D
Poor Therese has had such a difficult time...I hate to be this much of a nuisance.
THIS IS STEFF ....HERE IN BODY AND SOUL...BUT "IN MIND?" WELL...THAT`S A MATTER OF OPINION....:(
x

:confused: did somebody just post something above me?

hehe..couldn't help myself steffi :p

Thanks, Steffi
 

No...I don't think you're the nuisance...but, I think I know who IS??? Yours truly....I have now attempted to send you a pm using the "click and drop down method...still waiting for your reply to that, i.e., if you ever receive it. I just asked Curious (who is trying desperately to help me with all this) "what if" there just doesn't happen to be a post with the name of the person I want to pm???? Then, what? As I said to Curious...now, I KNOW I'm leaving myself "wide open" proving that I'm a HUGE DUMMY!!! Oh, well...will just have to see what happens with all this. I have even considered "not bothering", but I'm not a "quitter"...a nuisance, yes...but, not a "quitter"!!!
I can't even "quit while I'm ahead"...it's too late for that!!! LOL

Therese

sent you a pm back. :D

just use the Member List.

http://neurotalk.psychcentral.com/memberlist.php