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

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 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?

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

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

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

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.

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