Reentry - and back to Reality

The message of taking care of ones self comes from a lot of directions. Family, friends and coworkers are often bearers of “Who takes care of you?” The message is appreciated though sometimes the boundaries are subject to more scrutiny than I like. These last two weeks have been nice. I’ve been off duty for the most part and the time freed up is amazing. “How hard can it be, right?” “What’s the big deal?” “You are such a great guy”, and the fateful one… “I hope my spouse would do what you’re doing”.

Annie moves pretty slowly when outside, particularly over uneven territory. It takes her time to get ready. She will always use the house bathroom at the last minute in lieu of anything public. So time gets lost in small increments. My caregiver workload is two to three hours a day in 5 to 25 minute increments. Doing most of the “errands” gets included since Annie cannot jump in the car and pick up a forgotten item at the store. We call this “step and fetch” a term that can come back to bite you if you’re not careful. In fact a friend found himself sleeping on the couch after a few too many “sprinkles” of the term.

But this also goes back to environment. I mentioned before the NIH folks said they’d like to have a “system” for the returning patient that took into account the environment. But not for the patient – for the caregivers. Keep the caregivers from facilitating the brain injury survivor into complacency. Caregivers want to do everything for the patient – bad idea. The only way for the patient to progress is to re-map the pathways to process information.

But back to re-entry. I loved having the time off from caregiving. I reveled in the freedom to move at my own pace and direction. I found I had extra time in the day for once. It made for a bumpy return when Annie came home. Suddenly my time was completely spoken for again. I was angry for several days – until we got back in our groove – and took it out on Annie. I knew I was doing it but couldn’t or didn’t want to stop. A week or so went by where I felt I simply didn’t want to be a caregiver any longer. But rather than run away, I got back into it. I recognized the commitment I made many years ago, stopped the pity party, and got back to work.

I did vow to take more time off - for both our benefit.