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Website suggestions for managing illness?

Posted by mtnrdredux (My Page) on
Wed, Jun 11, 14 at 7:41

A good friend who was just diagnosed with a serious disease has asked me to be her "spokesperson" and also to start a website for her. The primary purpose is to relieve her of the burden of keeping her very large circle of family and friends up to date, which can be very draining. It needs to offer privacy and also include a scheduling function for volunteers to help out with her children, or drive her to/from treatments, make a meal, etc etc.

I had a relative who used Caring Bridge, and I know there are several other sites out there. Has anyone used these? Are they easy to use? Are some sites better than others in functionality?

Thanks in advance.

PS, by the way, I came across this article below, and thought it was quite good. It is about breast cancer but really can be generalized to any condition.

Here is a link that might be useful: How to help a sick friend


Follow-Up Postings:

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RE: Website suggestions for managing illness?

What a blessing you are to your friend. I wish her the best.

I have only used Caring Bridge and found it very easy to use. Hopefully others will have other experiences to share!


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RE: Website suggestions for managing illness?

I'm not sure if this applies, but a coworker and friend recently went through breast cancer treatment and someone set up schedules etc. through My Cancer Circle. I found it easy to use as far as knowing when I could help out.

Beth


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RE: Website suggestions for managing illness?

Can't help on your quest, but am so sorry to hear about your friend. She's lucky to have you in her life.


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RE: Website suggestions for managing illness?

Caring Bridge is a good one, but I get annoyed by the ads (necessary) to support the site.

I am seeing more people setting up Facebook pages to use for health updates.

When our adult son was going through a health crisis earlier this year, I was overwhelmed with telephone calls and finally sent out a mass email asking that people not call.

I wrote that we knew that everyone cared and wanted to help, but we would prefer to update by email. (For a while I was so scared, each call was putting me in tears. The niceness of people always 'gets' to me.)

Our friends and family respected this request and I did daily updates until our son was able to email himself.

Good thoughts for your friend.

ML

This post was edited by maddielee on Wed, Jun 11, 14 at 9:33


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RE: Website suggestions for managing illness?

I learned of Caring Bridge here and recommended it to my aunt who has since passed. She had a very large circle of friends and it worked out fantastic. There is a place for friends to leave well wishes which was so nice for my aunt to see. You can post pictures as well and once the friend or relative signs up (free) they get notices on status updates so everyone is kept in the loop. Up till the time they started a page on Caring Bridge the phone was ringing nonstop for news and it was incredibly overwhelming.
Sorry about your friend, she is lucky to have you!


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RE: Website suggestions for managing illness?

What a wonderful article, Mtn. I wish I could have sent that to everyone when I was ill. I don't have any other site suggestions as the article mentions all the ones that I could remember.


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RE: Website suggestions for managing illness?

Mtn.....I am so sorry for your friend and how wonderful you will be able to do this for her. I hope she gets through this and gets a clean bill of health.

I wish I had known about these websites when a friend was diagnosed with colon cancer several years ago. As "the friend" I was never sure what to do....was I doing too little? Is she going to feel I'm intruding if I call often?

I know she had closer friends than me, but when she passed away suddenly just before Christmas, I felt like I had not done enough for her or seen her enough.

Thanks for sharing the link on how to better help a friend going through a serious illness...very helpful information.


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RE: Website suggestions for managing illness?

I am so sorry to hear about your friend. She is lucky to have you to help her through this illness.

Caring Bridge is the only website I'm familiar with for leaving messages, etc. But when a friend was diagnosed with breast cancer a little over a year ago, there was a website that someone set up to organize meal provisions. I can't recall the name of it, but if you're interested in that aspect, let me know and I'll try to find out. It basically let those interested sign up for the day/evening of their choice to provide a meal to the family.

Other suggestions for meals, made by my friend, were gift cards from a couple of nearby restaurants so her DH could pick up take-out meals for the family, which included a busy teen-age son.


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RE: Website suggestions for managing illness?

What you're doing for your friend is wonderful. I hope she makes it through her treatments. I just had my 5 year anniversary with breast cancer. Fear, pain, exhaustion...I didn't have enough leftover to hold other people's hands about it. I'm not familiar with the Caring Bridge website, but I do know about one that outsideplayng describes. I've been signing up to take meals to a family in my neighborhood who are caring for their son with ALS.

Here is a link that might be useful: CareCalendar


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RE: Website suggestions for managing illness?

I've had several friends use Caring Bridge and it's a wonderful service. I'd encourage everyone using it to keep up with their loved ones to make a donation to it, if they are able. Even $5 or $10 from each of us who depend on it for news will make a difference in the services they provide.


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RE: Website suggestions for managing illness?

You're a good friend, mtn and I'm sure taking this on is a tremendous relief to your friend. The only site I'm familiar with is Caring Bridge but it seems there are a lot of good options.


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RE: Website suggestions for managing illness?

Thank you, DLM. It actually is a relief to ME, to have a concrete way to help., KWIM?

Very good point, Olychick.

I'm glad to hear of your good health, Seagrass. Yes, one hates to think that people who mean well can become a burden for the person at the center of it all! Thanks for the link.

Outside, Thank you. It's such a total shock, She is relatively young and very healthy. Exercises, and very into nutrition. It's never fair for anyone to get sick, but it just underscores how random it can all be.Thanks for your suggestions.

Joanie, I think i recall you posting about this, about feeling regrets when you lost a friend. I lost a very young niece, and felt the same way. Perhaps illness makes us all feel "inadequate" because we are. It's a problem we can't fix. Glad you found the link useful; when i read it I thought it was something other people might be able to use.

Fun, Glad to hear your illness is past tense! Good to know that the article made sense to someone who can really relate - thanks.

Jterri, Thanks so much.

Thanks, MaddieLee. Hope your son is doing well. I categorically avoid Facebook. We were on it when it was still quite new, and got into a kerfuffle about who is "friends" with whom and what that means (involving relatives exes' and totally by accident on our part). I don't even know how to use it anymore.

Thank you, Annie, you are sweet. My girls' love those little kitten faces (but I swear I think even the photo made me sneeze).

Bethpen, thanks, I will look at that.

Jade, I am tempted to go with CaringBridge. But no one seems to be mentioning it for its planning function, so I am wondering how good it will be for rides/meals, etc?

Maybe I missed it, but has anyone used CaringBridge for that purpose?

Thanks again.


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RE: Website suggestions for managing illness?

Outsideplaying, you might be thinking of a site I have used and was planning to recommend: lotsahelpinghands.com

I've linked to it below. We used it as part of a caring circle for a friend in our group of parents who had a brain tumor. It really worked wonderfully well. We took care of providing meals for several months 5 nights/week with weekends left for them to be together as a family; in addition to the time together, the parents wanted the kids to start learning to help more with household chores before their mom died.

We also used the site to set up visiting schedules for her hospital stays and at one point also set up a schedule to see her at home while she still felt up to it. As I recall it was very easy to use and worked quite well.

Ann

Here is a link that might be useful: Lotsa Helping Hands


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RE: Website suggestions for managing illness?

Mtn, based on my experiences, I haven't used one program that works as both a communication tool and a planning tool. It seems they are one or the other.

But based on the article you posted (which was wonderful, BTW--thanks for sharing), the Lotsahelping hands might be strong at planning and scheduling, while offering options for group communication. It has 2 features that I believe are especially important based on using other sites: the ability to manage user permissions (this becomes more important, the broader the community becomes, unless you are limiting it to a select few who you know will be supportive and tactful) and a mobile app.

Good luck with this project, and I know what you mean--having something tangible to do for her is, in itself, comforting.


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RE: Website suggestions for managing illness?

I used Lotsa Helping Hands, too. Excellent.


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RE: Website suggestions for managing illness?

I have had several friends whose health updates were communicated via Caring Bridge. It's a great site for what it is, updates and guest comments, but I am unaware of any calendar function it might have.

You could use google calendar for a rota of dinners and/or helpers, and use one post/update to let people know how they can help post a link to the calendar. They'd have to email you with their date preferences and you could put them on the calendar for everyone who had the link to see.

You're a very good friend to take this on. I'm sorry to hear when anyone with school age children falls seriously ill, especially a mom. She knew what she was doing when she asked you to be in charge of this.


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RE: Website suggestions for managing illness?

I am so sorry to hear your friend is ill. What great support you are offering-- this will allow her to focus on the things she must.

A caringbridge site was setup when a childhood friend became ill. When he was in his final days and after he passed, the site was used to plan meals for the family and activities/childcare for the children. I don't remember much about it but I remember that it was very easy to use. I seem to remember that there were very specific requests i.e. what kinds of meals .. and clear instructions for how to deliver them.

I am certain there was a great outpouring of support. However, I do not know if it actually covered their needs without overlap or extra burden.


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RE: Website suggestions for managing illness?

Thanks, Funky, that's such helpful feedback. I find with online tools, you don't know how good they are until you use them.

KSWL, You are kind. : ) Caringbridge does have functionality for planning support, though I wondered how usable.

Running, Peony and Cyn, Caring also has mobile apps and the calendar/planning function. It may sound funny, but my friend would never use the word "Lotsa", so somehow I found myself shying away from it. : )

I set up a page already and have played around with it.


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RE: Website suggestions for managing illness?

I set up a Caring Bridge site for my brother and sis-in-law when my nephew was diagnosed with Craniosynestosis two years ago. It really helped with disseminating information to all who were concerned, and as a side benefit put them in touch with other parents whose babies had the same diagnosis.
It was easy for them to use from their mobile devises when they had to travel to Texas for surgery. My sis-in-law was so grateful that she had one point for contact and didn't need to worry about calling a zillion people with updates, especially while in the hospital.
Because there were very few local friends that were involved or concerned (they live in a pretty remote rural area), a calendar function wasn't an issue.
I concur that supporting sites such as Caring Bridge with even small donations is a marvelous thing to do.
I'm so sorry for your friend. It's a good thing you're doing. I know the feeling of helplessness. Setting up a network like you are is a godsend to your friend.


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