Thoughts for caregivers, friends and family...

[Mary]

Survivors and patients - If someone were to come to you and tell you that their loved-one has just been diagnosed, what do you think you would share with them that would help them in their journey?

Caregivers - this is a great chance for you to speak up and give advice to others who are being thrown into the caregiver role.

Think about...

• What your loved-ones did that helped and encouraged you
• Pitfalls to avoid (perhaps something a loved-one did that didn't help or required too much energy)
• What you wished your loved-ones had known about your needs or about their own needs during the experience

Basically, I am looking for a list of things that caregivers/friends can do that are helpful and encouraging. I am also looking for ways that caregivers/friends can help themselves as well as the patient. If you have a specifically poignant example, please share the whole story, because I may use it on the site as well.

I could get this stuff from a book (actually I have this one in front of me), but you guys are just as good as any book. I'd rather use our compiled experiences anyday. Plus, I want to make sure you're using the brain cells you have left. 

[Cathy]

Mary,

I was well taken care of by my husband and friends.  However, since my dysfunctional family did not participate in my care at all, it was overwhelming for him to be the sole caretaker since I was basically out of it most of the time.  But he said later that if someone would have just stayed and answered the phone the many times I was hospitalized, and walked and fed the dog, brought in the mail and small things like that it would have helped him immensely as he was trying to keep his full time job and me, his other full time job.  So those are the things I have heard him express as the caretaker's point of view.

Medically, there were so many things that fell through the cracks with me that are too numerous too list.  The cancer center here is just not capable of meeting the needs of all the patients they have other than their treatments.  Their was no soft place to fall there, and of course, with osteosarcoma, (and especially a hemipelvectomy),  I was their first patient ever with it and they didn't know what to do with me.  I feel cheated when I read about these fabulous cancer centers with psychological help and other amenities available to them.  Ah well, been there done that and GLAD IT'S OVER!!!!   

Hope this helped with your questions.

Cathy

[Cari]

Advice for the faithful caretakers......
Don't take it personally!!!!!   I don't know how many times I snapped the heads off of my parents just because they were the closest and safest people to yell at.  There were many times that I thought I wanted them to leave me alone in my misery and all they did was everything to try and make me happy and comfortable...
When food refuses to be eaten, when tears can not be wiped away, when short smart ass'ed answers are the only form of conversation...Don't take it personally......it was the one thing that I thought I had control over (which I didn't) now that I look back on it and have met others who are caregivers I see a whole other side of what parents went through---I have since apologized

[Joan]

I remember when I first started my treatment there were many people at the cancer center who encouraged me or said positive things to me.  They were part of my "angel" network because when I needed it most someone had something great to say to me.  After being there for a few months, I realized that it was my turn to be someone's "angel" and tried to help and encourage others. 

So if someone were to tell me their loved one was just diagnosed I would tell them I was sorry to hear the news and tell them an appropriate survival story if I could.  I would encourage them to help their loved one get the best treatment available and, above all, help them get and keep a positive attitude.  And I would encourage them to solicit everyone they know for prayers.

One thing that helped me the most was that my husband took over all the details so I wouldn't have to worry about anything but getting well.  He was at home in Kansas City while I was in Houston, so he took care of all the financial stuff...apartment rent, doctor bills, bills at home and my 3 year-old's care.  He also came to visit me after every round...expensive, but worth it.  He was the one I could share my true feelings with.

Rotate or change caregivers as often as you can.  I had to have a caregiver in Houston and was there for 5 months.  For my situation, a different caregiver each month would have been ideal.

Don't agree to be a caregiver if you really aren't cut out for it or up to it.  For awhile, I had a caregiver that wan't mentally able to be the caregiver I needed.

By the same token, if a caregiver isn't working out, replace them.  I didn't want to be trouble for my family so I put up with the situation for longer than I really needed to.

Bring dinner over in disposable dishes and/or volunteer to take the kids for a night or two.  I enjoyed being able to get rest without being interrupted.