As I’m looking for a job, we set up respite care to come in for a bit.  This week was Day 1 and I spent a bit of time training the new person, and then left.  It was so strange.  I had several hours to myself and I felt…so…lost.

Every minute of my life for the last 7 years has been consumed with making sure she is taken care of.  Even when her husband looks after her at night, I’m still on call and I still feel the weight of the responsibility.

For a brief moment with respite care I didn’t feel that responsibility.  But felt like I could relax.  Sort of.  How in the world do you relax after 7 years of 24/7 care?  What do you do?  How do you spend your time?  Caregiving is a long season of no friends locally and no special interests or hobbies.  Maybe for some caregivers that is possible but with severe LBD that is not.

I know I can’t exactly go out and start “doing” in the community as soon as I find a job, I’ll be a full-time employee as well as full-time caregiver in all the time in-between.  So there’s won’t be much rest or social life at all still.  But finding a job is now needed.

They say when someone has cared for a loved one full-time for more than a couple of years as a caregiver, when they pass away it is the same emotive impact as losing a child.  I can see that more and more as a possibility.  Because even now as I have a rare few hours off, like a child all I can think of is being with her.  I need the rest.  Desperately.  But it’s so strange to have even a few hours after so many years of such intensity.