Thursday, June 14, 2012

A note for me...

I wrote this about a year ago and it is even more true for me today...

This has been on my mind for awhile. If I ramble, please, forgive me.
I am just so frustrated and I have to say these things or I might
burst at the seams. I am writing this for me and if I post it please
know I am okay.

Taking care of someone you love who is long-term, terminally ill
is one of the hardest jobs you will ever undertake. You are on duty
24 hours a day. 7 days a week. Your other responsibilities don't
disappear... you are still a parent,employee, friend, spouse,
bill payer, etc.

If you are lucky you have people in your life who "get it". Bosses
who tell you, "It's ok. Do what you need to do." Friends who aren't
offended that they are always the one making the effort to maintain
your friendship. Co-workers who cover for you at a moments
notice. Family members who genuinely try to help...and others who
would if they could. But many people who know you don't know that
you are a caretaker. Many who do know, have little concept of what
your life is like. Invitations cannot be accepted. Or advanced. Simple
things like your child inviting a friend over after school can no
longer occur. Eventually, the invitations stop coming.  And you feel
guilt. You are not doing enough foreveryone else... THEIR lives
are being impacted because of a choice that YOU made. You have to
fit your life into the small and rare occasions when someone else
can be there for your loved one. If your immediate family is part
of the care then you juggle who gets to "go out", knowing that
"going out" means going to the grocery store. You cannot just stop
and take your kids to something as simple as the movies. And
 eventually true family time is non-existent. You end up resenting
the person you love. Yes, that is part of it all. You're ashamed of the
resentment. But it is there.

And there are the people who don't "get it". They are the people
who judge.. they've taken care of a family member and it wasn't that
difficult. I read that 50% of caretakers of a terminal family member
die BEFORE their loved one from complications of stress. Well
meaning people will tell you "Don't forget to take time for you." And,
you know they mean it. And, they are right. But, taking time for you
means time taken away from someone else.

And my favorite thing that people have said to me, "Well, at least you
still have your mom. I would give anything to have mine back." I am
so sorry for their loss. Truly I am. But, you know what? I would like
to have my mom back too because I guarantee you that the person I
am taking care of is NOT my mother. She is a stranger in my
mother's body. I miss my Mom, too!


  1. I hear you on this. I feel you on this-Take time for you? Who is you? Is that another person that I don't have enough time for and that I feel guilty about? Weird though.... I don't remember what you looks like.