My Thoughts on Caregivers on our Board

[Guest guest]

O.K. Here is where I stand as far as caregivers being on our board.

When I first came here....post #300....we had patients and caregivers. Bob from Utah, who posted for his wife. Dorothy Scarland who posted for Bill. Then, Ann who posted for her dad. Teri who posts for Jon, most of the time. Cyndi, now who posts for her dad.....many more.

There are people who are suffering with this vicious disease who will not come near a computer and in this way their loved ones keep them connected to the rest of us.

I have learned from these people. For instance Bob told me about the rolling back pack and told Ginger how to make a ramp for her scooter. Caregivers learn how to help their loved ones through our experiences and suggestions

I do agree that the complaints and expressions of frustrations about caring for grouchy people like ourselves need to be expressed elsewhere. I admire you people who deal with people like me. I can be a bear. Difficult. Wish my husband would go the caregiver site and let loose! But, will not touch a computer. He just takes long walks!

But, to say that only "patients" themselves may be here....when there are those speaking for patients (such as Cyndi)....limits them and restricts all of us so that we and they miss good information.

Let us use common sense. If you need to complain, cry, express frustration about dealing with a patient.....go to the caregiver's site. If you are here to support and relay information to a patient who will not use the computer, then this is the place for you. You can be both places, even.

And for my sake.....PLEASE.....stop the bickering. It upsets me and I am just exhausted with emotional issues. Leave decisions about who can and who can not be on this board to those of us who try to make wise decisions about this. Especially Leanne, who is the owner of this site.

If you have to blow off steam about another person who posts, it does not need to be on open forum. We don't need a bunch of hurt feelings for those of us who are struggling against death every day. Take you complaint by private e-mail to Leanne, Beth, or myself. We will try to make the right decision. Just keep in mind that we are very sick ourselves!

Don't just arbitrarily make a statement to the board about who can and who cannot post here. Good grief, who needs this mean spirited dialogue. Think before you speak. Run it past Leanne or us.

I am here and I hope that you are here to help others and get much needed support in the fight against a vicious enemy. Let us love and be gentle with one another.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16