The Best Laid Plans

This time last year, I was in Washington D.C. taking part in a week long event hosted by the Elizabeth Dole Foundation. This week long event included a Gala so I was able to dress up, put a little makeup on and go mingle with other caregivers and those that support us. It was so much fun. I so enjoy meeting new people and chatting them up.

As with everything in 2020, COVID has required everyone to do events virtually. I am actually good with this. Long before COVID, ALS put a stop to getting out. The Big He is not all that mobile these days. It’s uncomfortable for him to be in his wheelchair for any length of time so we spend our days in the master bedroom. The formal gala that I attended last year is virtual this year. So for us, watching in the comfort of our bedroom is just fine. I did however have the best plans for us to dress up to include our paid caregiver M as well as the puppers. Lou even has a new bow tie. You notice I said ‘plans to dress up’ right?

This morning Lou woke me up and the Big He was staring at me. It turns out his communication device stopped and he had been unable to get my attention since 3 a.m.(with his trache he no longer makes any noises and since he is paralyzed, he couldn’t do anything but lay there) to help him. We often wake up multiple times a night because he needs to be suctioned. He did have multiple times he needed suctioning that some how he was able to resolve but also had to deal with panic attacks because his inability to get me. I spent the morning beating my self up. Why? The guilt attached with not being able to meet his needs has been overwhelming. I can handle the Big He’s anger and frustration that is generously given but what I can’t handle is knowing that he experienced fear and helplessness.

The issue has been resolved. His computer is working without any issues and I have set up a switch/alarm system next to his head that he can use since he does have some movement in his head and neck. As the evening has approached I find I just don’t have it in me to get dressed up. My heart is sad. I know I am only human as a few caregivers in my caregiver tribe reminded me. This morning, I was the Big He’s wife. The woman who loves him dearly and would do anything to protect him, to make him comfortable and safe. This morning, as his wife I did not do that. He however has been amazing and loving. He has reminded me all day how much he loves me and that he understands I am only human.

So since my plan to have a fancy dress up night will not happen, here are some photos of the event from last year.