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Hi, all. I am forwarding (with Joyce's permission) a message sent to me and my reply. Barb From [log in to unmask] Nov 16 19:52:58 1995 Date: Wed, 15 Nov 1995 19:44:24 -0500 From: [log in to unmask] Cc: [log in to unmask] Subject: Re: family support In a message dated 95-11-15 01:05:03 EST, you write: >Hi Nancy, thank you for your reply, what you said is so true. > > (No one else for support for mother-in-law with PD+) > <message deleted> Debra, I know so much what you are going through. I read your original post and wanted to respond, but really didn't know what to say--still don't. I think that it helps us as caregivers and/or other relatives (particularly children of PD patients) to just get together and "compare notes." I have met personally with a "lurker" on this list whose mother has PD. We set up the meeting just to be able to talk openly about problems such as the ones you've described. As I read your post tonight, I am wondering if it would be possible to set up a list like this for caregivers. I think a lot of us feel that if we really say what we think about our emotions concerning our PD person, that we will upset the PD patients who are also reading the list (although as many have said, it helps the patient understand some of our frustrations). John Cottingham has posted several encouraging items aimed directly at caregivers. If you have not had a chance to read them, they are available in the archives (how you get there I have no idea off the top of my head!). John's posts have been very helpful, and stress that the primary thing to remember is: CAREGIVERS NEED CARE, TOO! I wish you well. joyce p.s. I am copying this post to Barb Patterson, in hopes that she might have ideas about whether or not setting up a new list would be....practical, I guess. It might also have already been done somewhere or attempted in the past (I could check the archives myself for that one, couldn't I!) Anyway, keep in touch with those of us on the list, keep us up to date as to what is happening with you and your family, and feel free to e-mail me anytime at: [log in to unmask] ---------- Forwarded message ---------- Date: Wed, 15 Nov 1995 21:26:40 -0500 (EST) From: Barbara Patterson <[log in to unmask]> To: [log in to unmask] Subject: Re: family support Hi. I'm not sure exactly who was replying to whose message but I really do think that it is important that caregivers feel free to speak up on the list. Just because we have pd doesn't mean that we want the entire focus on us...we KNOW we need our caregivers and we KNOW we need our caregivers to stay well themselves. The people who live in the same house with us sometimes know us almost as well as we know ourselves. As an example, one evening when we had visitors, my husband starting making the 'time to go' moves..you know...'well, it certainly has been good to see you again' sort of thing. He said afterwards that he could tell by my voice that I was tired. He also knows that if I am interested in something, I will ignore being tired but that I pay for it afterwards. If you like, I will forward your message to the list. It should start a fairly lively discussion :) I think you will find that airing out our feelings can be helpful to all concerned. Don't think I am insisting on bringing this discussion to the list...it is up to you to decide if you want to. If it helps anyone of us, I think it's worthwhile. We know that pd has an effect on the whole family, not just the patient. Barb