Do you have an advocate?
If you’re making your way through the cancer journey, no matter what the prognosis, you need a helping hand.
You need an advocate.
I can not count the number of times, Leroy and I would meet with the doctors and come away with completely different “reads” on their message. We’d look at each other and say “Were you in the same room I was?” We’d go back over our notes and talk about how we interpreted their meaning and ultimately we’d come to a reasonable conclusion. Making informed decisions from these “group” chats helped so much. And when it was time for me, as the advocate, to make a decision on my own, I knew it really wasn’t on my own, because we’d covered so much cancer ground already.
There were times when he was in the hospital when advocating for his well being was so important. There were the little things like getting snacks and meals right, or bigger issues with doctors and nurses.
Advocating for a loved one is part of care giving. It’s not easy.
It’s like we’ve said so many times about becoming a care giver; We didn’t ask for it, but it’s probably the most important job we’ll ever do.
July 6, 2016 @ 7:37 am
Sometimes patients simply don’t have a voice for many reasons. Those of us who have loved them and have been there every step of the way must step up and as caregivers we give it our all. I have done this twice and hope and pray I never have to do it again but if needed I’m there. Jim would often thank me and question why I put up with it all and my answer was always the question “would you do this for me” and the answer always “of course I would”. If I could do it over there are surely somethings I would handle differently but caregiving is definitely on the job training and we give it our best.
Al…God bless you and peace to you.
July 6, 2016 @ 7:42 am
Thank you. To you as well.
July 5, 2016 @ 7:24 pm
Some in the fight have no idea the value of an informed advocate perhaps an uninformed one who’ll stand up and say “Wait”. Time is often the enemy because so much needs to be decided quickly or at least that is the feeling true or not.
I have been there. Upon reflection, I may have done things differently but faced with the life or death situation at the moment, I chose life regardless of the possible consequences down the road. I was willing to just keep her alive until there was some other procedure or choice available. I wish things could have been in slow motion….time to think, to reflect, to ask, to study, to play “what if”…but the urgency of the situation did not allow time to slow down.
She had been my caregiver for so many years….thru countless surgeries, chemo, radiation, giving me shots, removing stitches, cleaning up my messes of blood and vomit, etc. And now, I am the caregiver and am trying to do as she had done…fiercely advocate and care for her as she had for me.
It became obvious after such an intense fight that her body was shutting down……enough is enough. I knew in my heart what she would do if the roles were reversed! So, I told her doctors that I wanted life support removed the following day. We had planned as a family to gather to be with her as this occurred along with our minister. She mercifully spared me the decision shortly after I left the hospital that night.
She was my advocate and I was hers. We walked life’s path together for 49 years. Being also a patient, I will tell you that IMHO being the patient is an easier role than that of a caregiver/advocate.
July 6, 2016 @ 9:47 pm
Al,
I feel every one of you words. The intense fight takes so much from both the care giver and the loved one. We do the best we can do under the circumstances. We make so many decisions; if we’re lucky we can talk them over with our loved ones, but when that isn’t the case we say a little prayer and hope for the best.
They knew that. They loved us, just like we loved them.
Laurie