While Joey spent the weekend in a respite apartment (that’s respite for his caregivers, mind you, he’d rather be home with his own stuff), Melissa and I traveled to a lovely spot in Minnesota as guests of a church with a big heart for service to others.
We spoke as a couple at a forum for Autism Awareness Month. It was well attended by folks caring for loved ones with autism and others who have friends or extended family members living with or caring for special needs.
A number of great questions and comments came up. I want to return to some of those here on the blog. They’ll be in no particular order except as to when they pop back into my head.
Melissa brought up what we call “the void.” Taking care of our son Joey for the last 23 years has blessed, warped, changed or any-number-of-other-verbed every aspect of our family life, our marriage included.
I hear similar thoughts from caregivers in other situations, such as those caring for a disabled or chronically ill spouse, or grown kids caring for parents with dementia or Alzheimer’s. Care giving takes over everything. Some relational bonding is put on hold or evaporates, while the care giving routines become a kind of alternative glue holding people together.
Then the daily care giving goes away. The person under care dies or is institutionalized. In our case, Joey is on the waiting list for a group home opening. Our dawn to dark (and sometimes in the dark) duties will move out with him. Melissa and I will be staring at each other with a lot of “Now what?” space in between us.
As important and immediately refreshing as we found our trip, we were urgent about getting things back to “normal” and we picked up Joey and whisked him to one of his favorite restaurants. The house might have been uncomfortably quiet as we unpacked a few bags and…
This is ground we’ve not been over, but can see in the not-too-far distance. We are trying to regenerate some of our couple time together, and keep up friendships, and envision things we want to do when we’re free to get on with them.
But we’re also interested in the experiences of those who’ve been over the territory, especially as couples. Did you experience the void? What did it do to your relationship? How did you (plural you, y’all) come out on the other side? Or did you?