A few nights ago, my father came over for dinner. Even though we have far too much on plate on any given day, we’re the only family who lives close-by so we try to spend time with him at least once a week, which just seems like the right thing to do since he is 99. As I sat down to a slice of Costco pizza (not a gourmet feast by any stretch), I yawned quite forcefully. My father innocently asked if I didn’t get enough sleep the night before. I chuckled inside and said, “I haven’t had enough sleep in 23 years. I keep searching for that place where I can rest but it's nowhere to be found.”
At times I am in denial that my stamina is starting to wane but it is becoming more and more obvious that my ability to survive on less than five hours of sleep per night is taking its toll. I try not to think about what things will be like in 10 or 20 years, and how will I maintain the pace required to support Ben. When he was very young, I asked myself the same thing, what would things be like in my 40s let alone reach the age of 50. Well, I’m here now.
Some days it IS the scary place I once thought it would be. And other days, well … I feel like I can handle it. I mean, what choice do I have? What has become more prevalent in recent years is an increasing feeling of angst that things will need to change in my life whether I want them to or not.
A Simpler Life
There are days when I feel angry that I am forced to continue this journey, longing for a simpler, slower, and more restful life. My friends and co-workers talk about retirement but that is not even a remote possibility in my world. Perhaps when I reach the age of 99 like my father.
For the past 18 months, we have been slowly driving ourselves into the ground after the sudden departure of Ben’s primary caregiver in the fall of 2014. At the time, we scrambled to keep life as normal as possible for Ben, relying on others within Ben’s support team to pitch in, but it was a struggle every day.
After 3 months of juggling and filling in the gaps, we hired a person in the full time caregiver role and started looking forward to a return of stability in our lives. That was a pipe dream. Following a few unplanned changes to Ben’s health, we began to see that this person was not whom we thought she was, or at least who presented herself in all of the interviews. We needed calm and reassurance during stressful times but we were the ones providing that to her. We so wanted it work because, quite honestly, we were (are) exhausted. It wasn’t that this person was a bad person but she was simply not catching on to the multi-tasking that is our world and the support that we really needed, in addition to Ben.
Things finally reached the breaking point and we had to part ways. We were back to drawing board, searching for a replacement, after months of wasted training.
Having less stamina means I can’t do it all myself. What worked when I was 30-something doesn’t work anymore. As much as I don’t want to admit it, I have come to realize that the value that I can provide to Ben is changing; rather than “doing” the hands-on work, we need to train and coach others to do this part. And, really, if I were Ben, would I want my parents so directly involved in all of the things in my life?
A Time for Transition
It’s a tough transition for me. It’s tough because it’s happening without my permission. On the one hand, my body is telling me things have to change and I don’t want them to change. On the other hand, I simply need some rest. Twenty-three years is a long time to listen to Ben on an audio monitor, all night, every night, to make sure he’s OK.
With Easter only a few days away, it strikes me that we have been on a rather extended Lenten journey. Something like 40 days + 500 since we lost our primary home support.
But Easter brings joy and new energy. I have a good feeling about the new person we have just hired. It’s not just a hope that things will work out like before. It’s different this time. Perhaps, this will really be the dawn of new life in Ben’s world, in our world.
There is healing in the risen Lord. Perhaps our search for an oasis of peace has come to an end.
I really hope so. I need the rest.