Showing deep respect for the job of caregiver

[lilyjohn]

So far we have spent our time and thoughts about all of our dear friends who are gone. I can add many to the list like Hebbie (Heather) Paddy's David and of coarse Carleens Kieth, then there was Norme's Buddy and Ginny's Earl and the list could go on for pages.

I think as we acknowledge our departed we need to take a minute and remember those of us who are now or have been caregivers. Many are still in there fighting for their loved ones and many of us are here fighting for all of those who are yet to be diagnosed. There are far too many of us who have lost the one that we were trying so desperately to save.

I don't think there is a one of us here that really signed on for the job we were required to do. I know that it was suspected that Johnny had lung cancer before I went to be with him but somehow I just never let myself believe that our time together would be cut so short or that during that time so much would happen to take his life and get me to where I am now.

We all know how hard it is to be a caregiver to someone with any kind of illness but lung cancer takes it's toll early and continues as long as we are required to be there. Then if it ends we are lost.

It is hard to lose someone you love no matter how it comes about. It is hard to watch someone you love suffer in anyway but with lung cancer the emtional and mental toll is just so high. We are called on to do things that we never dreamed we would need to do, we have to have courage to face each day and if it ends far too soon as it has for so many of us we have all of that energy that we were using to care for our loved one but there is no longer any place to use it.

I know that I felt as if the world had been pulled out from under me. For months my every thought and every deed was to care for Johnny. Everything else was put on hold, then he was gone and I was adrift in a big hostile world and didn't know what to do or where to go.

I know that my experience was not unique. I know that most of us go through all of the same things. Sure each case is different but there are just so many things that are alike.

I believe as we work so hard to get the word out there about lung cancer that we need to mention not only the patients but the caregivers. People need to know what is does to a family both the good and the bad. How can we ever hope to make people understand unless we can find away to make them see that lung cancer is not just numbers. It is a life destroyer and changer not just for the patient but for everyone who loves them. So now here is to all of us and so many others who are just starting out on this road.

I know that I often put things out for you to read that maybe should stay private but I truly believe that we need to make sure that each person here is known as a person not the disease. We have to not be afraid to let people see how hard our job is or has been and how much our lives have been changed , not by our choice but by a diseas that most people have no idea of what it can really do.

So I know there are many that I will miss. Please don't think that I am slighting anyone, my memory is good but not good enough to remember everyone. I will just list the ones who are on the tip of my tongue.

So hats off to therse caregivers.

Myself for Johnny

Ann for her Dennis

Michelle for her Donald

Paddy for her David

Randy for his Debb

Ry for her John

Norme for her Buddy

Don for his Lucie

Ginny for her Earl

Carleen for her Kieth

Peggy for her Don

Pat for her Brian

Teri for her Bill

Bobby for her sister Bev

Nick for his mom

Sharon for her dad

Katie for her dad Jessee

Kellly for her mom Bev

Shirley for her Randy

Sams wife Shirley for Sam

JC--Jackie for her Mike

Sue for her Mike

I know that I have missed many. Please everyone feel free to add to this list. I know too that all may not have been primary caregivers but most were. Somehow some day perhaps we can make the world see just how many people are touched but this monster. Maybe if the see us and our loved ones as real people they will learn to have a little compassion and decide to help us fight for a better life and outcome for lung cancer families.

[RandyW]

Thanks Lily!!!

[michellep]

I too would like to Thank You Lily You're such a thoughtful person and much appreciated here.

(((HUGS)))

[LisaEz]

I guess that is one good thing about my father's quick death, we didn't have to enter in to the long-term caregiver roles, although we had been during his year long hospitalization and recovery back in 2005. I agree with you that we need visibility and compassion for caregivers, as well as a recognition of the amazing role that they play in the care and even deaths of their loved ones. My father in law had Non-Hodgkins Lymphoma which morphed over the years into Chronic Leukocitic Leukemia. He lived for 18 years with the cancer before dying back in 2007. He was relatively healthy for many of those years but was very sick for about the last three years. I know that my mother in law was left reeling not only from the loss of her beloved husband, but from the sudden absence of that role that had been so very important for so long. She was at loose ends and didn't know where to turn once she no longer had diapers to change, suppositories to insert, oxygen bottles to replace, etc....

I wish we could take some of the money that is saved in our society every year by families taking care of their loved ones versus having to have those people in institutional care and use that money to raise awareness of how important caregivers are and how deeply affected they are by what they go through.

[Ann]

Lillian...thanks so much for this post!!!

[Nick C]

I will always feel it was an honor to be my mother's caregiver.

I came into this world completely in her care, she left the world under mine. I wouldn't have had it any other way.

A very neat thought Lily.

[Marci]

Wow Nick nicely put I feel the same!!!!