Caregivers

[Mitch]

I feel that the caregivers need some help here, and we should start some sharing. Andrew agrees. So let's start this up.

[pberggren1]

I don't think my parents would join on here but I may be able to convince my mom.

[Jack]

I'm in a similar position. My wife and daughters would not want to join a group like this and after all these years they probably don't feel the need to seek any advice.

[DEE]

My husband BARON joined the forum about six months before i felt able too , it helped him sort things out when i was busy trying to sort me if that makes sense DEE x

[Sangye]

Well, we already have Danell (for Mitch), Palmyra (for Allison), BrianR (for Marta) and others I can't remember off the top of my head. That's certainly enough to start. I say you guys go for it.

[Palmyra]

I will jump in on this topic! It is my speciality...I am literally a professional caregiver (dentistry/oral medicine) and have had the honor of learning and dealing with the problems that you all face in dealing with this disease while assisting my daughter. While not feeling the physical pain, I can tell you that the emotional pain and stress involved has changed my life. I am now at the interesting stage of "handing over the reins," transitioning the responsibility to my daughter, which is a slow process. I have found much support on the Yahoo 'Parents' site, which is for parents of children with vasculitis. They have been a wealth of support and information when my daughter has been in crisis.

parents4wegeners : Parents of WG / Vasculitides Patients

I also appreciate being able to come here for the knowledge of this brilliant collective. I have encouraged my daughter to browse this site, with the hope that one day she will join and interact. Best wishes to all, and thanks for starting this thread.

[Daggar]

Thanks for the link Palmyra!!

There are a number of parents on this site that have been very, very helpful and we appreciate it!!

WeggieParent ... JeriOrleans... to name a couple.

As a "caregiver" there are times when you'll have that "deer in the headlights" look..... it's not easy but we should still consider ourselves very lucky to still have that loved one with us!!

[WeggieParent]

I think caregivers have the same questions as WG patients. Why is this happening? What can I do to fix it? (That's a parent thing!) What does it mean when that hurts? How long should we let that go on before calling the doctor?

Even though my 16 yr old has WG, our whole family suffers with her every ache and pain. We worry and obsess over every breath she takes when she's not feeling 100%. When she's feeling good, I still worry and obsess that there might be something going on inside her that we don't know about.

This website has been a wealth of information. I'll read a thread that may not pertain to her symptoms at the moment but I always keep that information in the back of my mind because I've learned in only 1 year, WG can do a big U-turn and do the unexpected. As a caregiver, I appreciate all the exchange of information and candid discussions!

[Skicpa]

I'm up for a caregiver thread. Anything that may help with coping would be helpful.

[Mitch]

Let's do it!