Creating a support network

Marcie48

I live in CA and my best friend lives in Florida. She has had a masectomy and is having complications recovering from her surgery. She went in for another surgery (long story) and in the meantime, her husband's mother is having both feet removed today and he is at his mom's bedside. My friend has another close friend who lives in Maine that has flown out to be with her and will be there until May 3rd and she has three adult children who are fairly local but overloaded. I know of another close friend in Arizona that will want to help also. I remember years ago reading about a woman who set up a support network for someone going through this. Someone to go to doctor's appointments, someone to do the wash, etc. I don't remember what they all did, however and my friend and her husband are in such a state of overload that they are not sure what they need. (I have asked). The doctor has refused to tell her the results of the tests of her lymph nodes, saying "we are taking this one step at a time" so of course we expect the worst.

I am planning to fly out there for the next shift of helping and have skills in coordinating teams but am uncertain of what is typically needed. What can we do from a distance and what needs to be done locally? Most importantly, what needs to be done in total? If you have any suggestions or can share anything that others did for your loved one, I would appreciate the input.

Thanks, Marcie

csp

Marcie,

One resource is contacting the local ACS , also there should be case managers at the treatment center or hospital that can help with scheduling out, they may be able

to help with getting someone for taking her back and forth

to treatments and running errands picking up rx.



Some patient at first needs lots of help physically

basic things like personal care, and depending on her reaction to treatments lots of stocking up on things that are easy to cook and fast.

Hire someone to come clean for her.

Sending cards and being there for the long haul emotional

support.

Light reading material .

DVD'S or video's

There are organizations that will help off set cost of treatment, if there is a need PM me and I will give you the info .

Setting up a blog for her so that you can post any new news for family and friends and they can leave messages for her as well, that way you all are'nt overwhelmed by the many phone calls from well meaning well wishes.



Hope this helps some-

Carrie

Marcie48

Thanks Carrie. I think she is covered so far with the finances since she has insurance but will find out more when I fly out there. I really don't know how to private mail and this is the first time I have ever posted to a board at all.

I have gotten the email address of two of her friends and will set up the equivalent of a blog, but hopefully more private for those that need info. via email. The things I thought of were housecleaning, food prep, driving and Dr. appt. attendance (I think one of her daughters who is local will do this) and moral support (Humor and prayer although I don't feel too jovial). I am concerned about things like daily bill paying (she not only is the one with the financial head in her family but acts as a conservator for another family member) and legal affairs. (I am an attorney so these morbid things come to my mind. That being said, I am not licensed in Florida nor would I want to do this type of work.)

I am incredibly scared as it appears that this has spread to the lymph nodes. She knows me well enough to know I would be scared but I don't want that fear to feed hers and I would like to have a mindset change so I could help her deal positively with this.

Also, are some types of clothes easier to get on and off than others? What can I do to help her be as independent after going home as possible? (She is by nature.)

csp

Marcie,
I was thinking of a lot of things but was'nt sure just what you wanted to know .
Ok first lets try to take your fear level down a notch, although this is serious, it does'nt mean it is a death sentence and I don't know about you, but thats the first thing I was thinking, oh my God I am going to lose my Sister! Well we are almost a year out from Dx and she is back to work and doing good! She had a very agressive Cancer that was 3.7 cm that had attatched to her chest wall. Hope that helps you feel some better, it isn't going to be easy as they will treat her agressive to kick some Cancer butt!

Clothing_- I bought my sister some button down the front nighties to make it easy for drains and for wound care and it was easier not to have to put her arms over her head (big ouch) big comfy shirts nothing with elastic or tight on lymph arm. They have these squishy pillows that are nice to prop thier arm up on too.

Food -Microwave something already cooked and in the freezer, so all she has to do is heat and eat.

While you are there you will get a better idea what she would need. You are like me I like to be prepared , but alot was waiting and seeing.

Let her talk , Let her feel (don't dismiss her fears)
But I did'nt share mine as it is about her.
And it is okay to cry together, would she expect you not too? No! Take your cues from her. I can't tell you how importain the emotional support is but it looks like to me you have that well in hand as you friend is very lucky to have such a caring person in her life.

If she has been independent expect some grouchy moods,
thats hard for them to give in to being helped. She still loves you!

Here is a Movie for you and your friend turn on your speakers and get out you tissues.
www.thesurvivormovie.com
Carrie

ramonajane

regarding the blog - check out www.caringbridge.org for a very useful way to make such a site.

Its free, and specifically set up for this type of situation. Its also much more private than a blog, and you have the ability to choose varying levels of privacy.

It was a lifesaver for me (as the caregiver) during the acute phase of the journey.

ramonajane

Oh - also check out www.lotsahelpinghands.com for a way to organize helpers. Again, its free, and its a tool specifically set up for this type of situation.

KariLynn

If she belongs to a church there are usually groups who help in these situations or someone can rally one up. I had a lady in our church get a list of people who would bring the family meals for a couple of days after chemo so I didn't have to cook. Your friend could tell you who the right person to ask to organize this would be or her pastor maybe. People like to help but need specific duties so don't be afraid to ask. If she's not involved in a church, maybe work friends could set something up.

You can be more help than you think from the other side of the country. Send cards and letters and maybe even little care packages with magazines or books or whatever that will remind her you're thinking of her and are something she can hold onto. I loved getting surprises in the mail from friends!

Point her to this site for support from women who know what she's going through - there's a lot of ladies with good tips on coping and they may be able to help her get what she needs.

I don't blog but did set up a mass distribution list on my email so I can send updates out to everyone at once - you might help her do this if she hasn't already.

Good luck and I hope your friend does well with treatments!!

Kari

Marcie48

Wow! What great information. Carrie, thanks for the fear reality check. (It is 3:30 am and I am sitting her writing so this should tell you something!) My friend has been in the hospital for almost two weeks now. She tends to be very optimistic and part of what is pretty scarry here is that this is getting to her plus her horror stories about the lack of care at the hospital are terrifying. When she was at her lowest her nurse got into a fight with someone across the hall and walked off the job, and was replaced by someone who had only been a nurse for one week and also took one look at her wounds and exclaimed how terrible it looked. (And this is only the tip of the iceberg of the stories).

I feel better about this now that there is another friend who is there by her side. It seems like she needs a healthy advocate just to keep from being killed by those who are suppose to "help" her.

Ironically, we both met because we both worked on a regional level with our churches, she covering the south/east portion of the US and I the west/central portion as coordinators for spiritual retreats. So the Lotsa Helping Hands web site looks like a natural. Ramonajane, have you used this site? What happens if someone signs up to help and then doesn't follow through?

Ironically, because we worked in the positions we did, going to church people for help is not very appealing. We were both put on pedestals and don't have much use for that role. There are undoubtedly people from that part of our lives that would be a great help but an open invitation would create chaos and irritation. Also, since resigning from that position, she has not worked for any extended period, so that is really not a potential source either. I think I will probably have to play this part by ear as we go along, trying to sort out real helpers from gawkers.

Thank all of you for your ideas and suggestions. When she is well enough to get to a computer and use it, I will refer her to this web site.

Thanks again! Marcie

ramonajane

Quote:

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Ramonajane, have you used this site? What happens if someone signs up to help and then doesn't follow through?

---

You know, we didn't use the Lotsa Helping Hands Web site. I discovered it too late.

I'd encourage you to go to the Web site and take the free "tour" - it goes through each part of the site and explains the features. If I recall, there is a part that talks about that issue - if someone signs up and then needs to cancel. There is a mechanism to do that.

I can't stress enough the value of the Caring Bridge page. Mass emails are useful, but one of the many benefits of Caring Bridge is that the journal is all right there. So people who forgot what you wrote last time can go back and look. And you have a "diary" of sorts, too.

Also, the guestbook section is so incredibly encouraging. To have all those supportive messages in one place.

Of course, as its said, your mileage may vary. What works for one might be different from what works for another. But please do take a peek at Caring Bridge and see if it might be a helpful resource.

Marcie48

Thanks. I will. I did check out the Lotsa Helping Hands site and it is incredible. I wish I had this type of resource when I was actually coordinating retreats! It looks like the way they suggest you try to deal with this is to have a volunteer or two that is willing to step in on an emergency basis with short notice.

I am assuming that my friend's husband will be her primary caregiver but he has to work if for no other reason than to keep their health insurance going. As the caregiver, how much care is needed? Does it differ with each person? Will she need someone at home 24/7? At what point is setting up this kind of support a help and at what point an intrusion? I took the initial steps to set up the network but then realized I probably need to be sure this would be appreciated. Of course, I will run all this past them. I am just not sure they are in any position to have the perspective to know the answers yet. Sorry for all the questions...I just keep thinking of more. - Marcie

csp

Marcie,
My sisters husband had to work also, so it was up to my mother and I to do the daily caregiving at first for my sister it was fulltime, mobility was a big issue and fatigue and pain and care for the drain. So it went our mom took the Am when hubby went to work I took the pm until he could be home with her and he called on us both if something came up
(that was our situation). After her 2nd chemo started we were back on full time again as she was very ill from the treatments.

But I want to note here that everyone responds differently to the Meds some breeze through with fatigue the only side effect and some like my sister get every little nasty thing in the book uncluding being hospitalized and some somewhere inbetween!
There is no way of knowing how she will respond. That is another one of those wait and see situations.

So when she first comes home I would think she will need full time care. A break as mobilty and strength return and maybe be prepared incase chemo knocks her on her butt.

Sending prayers,
Carrie

cowgirl

Just a side note, some people are very private about their care and others tell everyone. I had a friend who was dxed before and after me, she did not want anyone to know either time. She is very outgoing and helpful, the type of person that would help anyone, but to her it is a very different thing to be ill.

So your instinct was right on target, make sure they want this help. She has shunned any outside help, matter of fact she was doing fundraising from her bed!

Praying for complete success in your endeavor!

ramonajane

I'm with cowgirl - it is very very important for the person with BC to be "in charge" of who gets told, and how much gets told, etc. (If they want that job. Some people may say "you decide".)

I know for my partner, it was hugely important for her to make those decisions. Everything about her body seemed out of control, but she could decide who got told, when, and how. She is a very private person, and did it differently than I would have if it had been mine to do.

But the important thing for us was that she had that control for as long as she wanted it. For some people she asked me to tell. And I did. For some people she said "I will tell, when I am ready." And I 100% respected that.

You are a good friend, OP. You'll learn a lot from this experience, and hopefully come away with a deeper friendship because of it. Not the way anyone would WANT to get a deeper friendship, but it could be a positive result nonetheless!

Marcie48

Great News! We finally heard about the results of the lymph node tests. Although the cancer had spread to the sentinel node, it did not get into the first lymph node. They are still going to do some chemo but not it is just a precaution and probably won't be as extensive as it could have been. What a relief. I am in the midst of trying to become more computer literate -- i.e. setting up the web site and support network. My friend was enthusiastic about the idea as she is already getting barraged by wellwishers and is very tired. I will, of course run all of what I create past her before it is open for viewing. We are very close friends. We have been friends for almost 20 years. I guess this could bring us closer but it is hard to know how and I must say...I would trade it all for her health.

Thank all of you for your input. I wish I had known about this years ago. I nursed 8 people either through their death process or to health as their paths took them -- all in 7 years. It was financially, emotionally, and spiritually devestating. I think I can finally find another way to do this. Many hands will make light work.

Thanks again! - Marcie

Marcie48

I just finished setting up the caring bridge web site. Wow! What a resource. Thanks Ramonajane. This will help satisfy everyone's need for connection and still allow my friend time to heal. My next step is going to be setting up the volunteer site. Thank you so much. This is my dearest friend in the world and the still after all the caretaking I have done the thought of doing it all over nearly had me in pieces. This will allow people to help in a sane manner and will take the load off of the primary caregivers. I can't thank you enough! - Marcie

rll

Does anyone have ideas on fundraising? I would like to gather friends and family to support my mom who has BC and I am not sure what to do. Any suggestions are greatly appreciated.