Thursday, November 1, 2012

November is Family Caregiver Month...

Today is the first day of  family caregiver month.  I was thrust into this role almost three years ago in January 2010 when my then 15 year old daughter was diagnosed with a congenital heart defect as well as pulmonary arterial hypertension and Eisenmengers Syndrome.  Both of these were caused by the lack of diagnosis of her congenital heart defect. 

To say this role has been difficult is an understatement.  Our lives were forever turned upside down.  For any caregiver, it is painful to watch your loved one be sick and/or watch them get sicker.  I can't express the feelings of helplessness I feel every single day. 

I had a friend on facebook private message me apologizing that she hadn't wished me a happy birthday.  She said that she thought about me every single day and wished with all of her being that she could help... but to no avail.  This really got me thinking about my experience with friends and acquaintances.  I get those who are just very uncomfortable around me for whatever reason... then there are those who don't want to bother me because I have "too much on my plate"  and while this may be true ... it is my decision to make as to whether or not this is true in my eyes.

There are those like my friend who feel that there's nothing that they can do but there are so many things you can do to help a family caregiver.  I belong to a wonderful online community of caregivers at and every Friday is take a meal to a family caregiver day.  I think that this is a wonderful idea.  You can call, text, email, private message a caregiver that you are thinking of them and it doesn't cost anything and it will put a smile on their face.  In Sept. Nicole had a doctor's appointment and a site change the same day and it was going to be a long day and a friend of mine late in the afternoon when we were still at the doctor's office called me and said she had a meal for me that she wanted to bring by.  This was so sweet of her and while she had to bring me the meal the next day it was so much appreciated.  A get together for an hour for a cup of coffee, stopping by the house to say "hi", a card in the mail etc.are all little things that mean so much.    My next door neighbor will bring me my mail, bring up my garbage can on garbage days and/or just come over to ask how Nicole is doing.  It doesn't have to be something big to make an impact on a caregiver's day.  

I understand how my friend feels.  I can't express how it feels to have a child (whether they are young or an adult) with an incurable illness.  The guilt (at least for me) and the helplessness I feel some days overwhelms me.  To me there is just a different bond/relationship that a mother has with a child than with any other relationship.  This is not to say that caregiving isn't difficult for anyone who who takes care of a parent, spouse, sibling, friend etc. because it is. 

I know that I can't make Nicole better which is a very hard pill to swallow and I wallow in this with denial, self-pity etc. but I have to think about Nicole as she is the one with the illness.  I would do anything to be able to make her better but since God is the only one that can do this and the only thing I can do is to  make her life easier which is my goal every day and I will strive to do this to the best of my ability regardless what people say or how they judge.

What can you do today to make life easier for a family caregiver?