Care Pages

[tjrasMOM]

I'm just curious how many people have set up a carepage for their loved ones? I was receiving SO MANY phone calls from Mom's friends and loved ones that it was overwhelming. I had told many people NOT to call her at the beginning because for one, it was just too hard for her to talk and repeat the same story over and over again. She was so winded and exhausted after one phone call. So, they started calling me. But then I couldn't do it anymore. If I were to talk to everyone who called, I'd be on the phone for 8 hours a day.

Finally I found carepages.com (a link from this web site of course...just look to the left of your screen under LCSC) & it became a blessing. I uploaded pictures of Mom, and I write an update to her friends, family and those who care at least once a week. She has over 5 pages of people who have registered to read her updates. And the comments people leave are wonderful. SOOO supportive. Anyway, I remember at the beginning I wasn't sure if she'd like it or if others would feel comfortable about reading and leaving messages for her....but it's been the best thing. Everyone loves it. Even Mom.

Just wondering if anyone else has done this. =)

[cat127]

i had never heard of this until your post, but what i did when my sister was first diagnosed, after all the insanity of figuring out exactly what was going on and what we would do about it, was to set up a blog. i ran it by her at first, since she told me that she felt the only thing she could control was the information and who knew it. she seemed to like it, though she never told me that directly now that i think about it. but i would go in and update the blog after a treatment or share a silly story, since she seems to have many silly stories associated with her dx and tx. sometimes i tease my family that i'm nost sure anyone is reading it, but they tell me that they all go there especially on treatment days to see how things went. we have family in canada and then folks spread out a bit in the US, so it saves me having to email everyone. though i worry sometimes that it also stops them from calling her to check on her. but i've found it to be a great way to keep in touch with folks, and used it also to fundraise for our LiveStrong Challenge bike team back this summer. ah, fundraising in the electronic age, so much easier!

i will have to check out this carepage site and see if it can add anything to my blooging.

[JB]

I like that idea. I think I'm going to look into it. Since DX i've been using email to get the word out. I usually only send an email after the results of one of Col's scans, but this would be a good way to just put on there some normal everyday stuff. Hopefully the next email I send out will have a carepages link on it. Thanks for the idea.

[nyka69]

I started a CarePage when all the calls and emails regarding my husband got too overwhelming. I wanted to be able to respond to each inquiry personally, but couldn't keep it up when caregiving became a full-time job. And I felt awful when I didn't return a call or respond to an email.

It served a number of purposes for me. Of course the intial reason for doing it was to keep everyone updated. But writing things out was a good way for me to vent. And when things started to change rapidly, it served as a diary I would use track changes in hubby's health.

I strongly recommend it to anyone that wants to keep loved ones updated, but don't have the time or emotional or physical strength to keep in touch.