“You gotta laugh at some of the things we go through as Caregivers or you could end up crying much of the time.”
About nine months before my husband passed away in early 2010, we received an invitation to my nieces wedding in Sacramento, CA, my hometown. She’s my only niece and there hadn’t been too many opportunities for the family to gather in many years. One of my three sisters, who I hadn’t seen in 15 years was coming with her husband from Oregon. I didn’t have to say anything. Ed knew that I really wanted to go to the wedding and see all my family. It was, approximately, a two hour plane trip from San Diego.
“Book the flight and hotel room, we’re going,” he said. I was thrilled, but then had second thoughts. Ed was totally blind by then and about 100 pounds. He could stand on his own but needed guidance and support when walking or using the bathroom. This would be a tough trip for him. “Are you sure you feel up to this?” I asked. “Absolutely,” was his answer.
You can see where this is going. There was no way we could get through a two hour flight without needing a bathroom. The flight attendants stored the transfer chair safely, just within my reach where they seated us in the front row of coach. When the time came, I said, “Okay, we can do this.” We had a special way of his getting out of a seat by putting his hands on my shoulders, me with bent knees lifting him up and walking backward so he walked forward. Once in, getting the door closed behind me was a bit tricky. But, it can be done. So don’t miss out on life because of the bathroom problem.
The wedding and family reunion were wonderful. I didn’t know until months later that Ed didn’t really know if he could get through it. But, he knew how much I would want to see my family so he was determined. He always said, “Love finds a way.”
I’d like to say a couple things about walking with someone who is blind and unable to walk on their own. Caregivers often learn things the hard way. When Ed’s eyesight first went totally, it was sudden. Dry macular degeneration with peripheral vision only for several years. One case in a hundred, one afternoon blood broke through the macula and started flooding one eyes vision and several days later the second. Total blindness. After about a year and a half enough blood had dissipated in one eye that there was a little light coming through. The retina specialist suggested cataract surgery, which was successful. Now there was enough light showing through that he could see shadows and how many fingers I was holding up. This doesn’t seem like much but it’s huge. He could tell up from down and had his balance again.
At first we walked with him holding onto my shoulders facing my back. It seemed to work fine. But he kept getting weaker. One day we walked out the front door and I stepped down the one porch step to the walkway. He lost balance and pulled me back on top of him as his back hit the wall and he slid down to the ground. I had caught myself so didn’t crush him. Thankfully, I had just that day, moved very large pots with trees away from that wall. His back would have hit the pots and been broken. “We got away in a coach!” Another of Ed’s sayings.
From then on, I walked backward with him facing me with his hands on my shoulders. It worked well. We even got a little fun out of it. I would sing as we marched (and I do not have a good voice!), “When Johnny comes marching home again, hurrah, hurrah…” Or, “I’m march’in to New Orleans, she used to be my honey, till she stole all my money…” You gotta laugh, it helps get you through.