Today, Elisabeth and I met at church a women who was 51 years old. She reminded me of Elisabeth, just a little. She at least could use her spastic fist and elbow to communicate by pointing to a word on her tray. And she had a caregiver who didn't look much older than her, but I was later informed that she was the mother. It threw me off. Way off.
When Elisabeth is 51, I will be 87 so I had a hard time convincing myself that she was the mother and she was most likely an aid. But, it certainly got my gears going thinking about Elisabeth's future. And what it looks like when she's my age. Will I be around? This reminded me about a story my friend was telling me about her young daughter and the caregiving concerns around their sibling with special needs. Needs that require 24/7 care like Elisabeth's. The story goes like this:
When Sarah was about 8 Bill and I were going out of town for a bit. She asked who would take care of Robby (he is 2 years older with many disabilities) when we are gone. I told her grandparents. She said “no I mean when you are gone”. I said I hoped that maybe her and her sister could take turns. Days later she said she wasn’t sure how that would work since she wanted to work at the zoo and Robby would open the doors and let all the animals out. I laughed and cried.
It really puts Elisabeth's future into an interesting perspective over how much planning is still required. Most families have the same back up plan. In case. A sibling (or two) will take turns. Not much of a plan, but we're lucky we can get through the day as it is.
We've talked about a place like St. Joseph's where she would receive the quality care for which they are known. Marjorie P. Lee is another option because Graeter's ice cream is nearby and everyone loves to visit Hyde Park. So, most likely her family and friends would drop by to take her out.
It's always a mystery what her life will look like because everything can change so quickly. No matter what we plan can all change. This has been the trend. Our experience. Care facilities for adults like Elisabeth lose funding and they shut down or change ownership. New places start from scratch and eventually, they too, shut down because they are not making a profit. Or, they are forced to make a profit sacrificing the quality care of the residents and hiring employees at low wages.
Elisabeth's new friend and her mother have an interesting story about their journey together, I'm sure. I learned what Elisabeth and our new friend had in common -- Redwood Therapy in Fort Mitchell. Although Elisabeth's new friend attended there as an adult when Elisabeth was just beginning in the infant care area.
But what still threw me off was realizing how old I'll be when Elisabeth is her age. A caregiving reality sank in for me after meeting her and I am not sure if I'm ready to face it. Am I even worthy to be her caregiver with all the planning I still have to continue doing?
It's a circle game. Like Joni's song, we're on a carousel through time. We can't look back, we can only look behind from where we came and go 'round and 'round and 'round in the circle game.
