10/19/2020- Day 8 Dodd Hall Stroke Rehabilitation

At the beginning of all this, when I walked into Billy's room, it would take him a little bit to recognize who I was. I would have to announce my presence, and then his face would light up and he would get excited that I was there. I have noticed that each day I come to see him, the recognition time becomes shorter and shorter. The excitement on his face though has never deviated away from pure excitement. Even on days when I come to see him and I feel completely drained due to excess tasks now bestowed upon me in light of the current circumstances, his reaction to my presence in the room energizes me and I feel ready to conquer the world again (or at least the mountain of laundry in my basement).

I've been reading aloud "The Silent Patient" to him since the 17th. It's become something we've very much enjoyed doing together. Sitting next to each other, drinking decaf tea, and enjoying the escape that only a book can bring. Both, to decrease screen time for him, and to allow some time for us to relax and enjoy each other's company. Yesterday was a rainy Sunday with zero therapy sessions planned. It was a perfect day to relax and read. I brought a tin of Royal Dansk butter cookies that reminded me of happy times with my grandmother. Perfectly paired with warm tea, we both escaped the rehab facility into a world of mystery and intrigue. Today, he announced to me that he was able to pick up the book and read a few pages all by himself! The connection between what he visually sees, and the recognition in his brain on what exactly he's looking at has been a struggle. He said that it wasn't perfect, but he was able to read, comprehend, and process that information on the page in a way he hadn't been able to do before. I am so proud of him!

Today, he discussed with occupational therapy about his goals moving forward. He told her the only thing he truly wants is his life back. Before he was able to explain what he meant by this statement, the therapist stated matter-of-factly to him that he would never be able to have his life back the way he had it before. Even though this statement was accurate, he felt a bit defeated and annoyed. He explained that, yes, he was aware of realistic expectations moving forward. He knows that life after a stroke is significantly different and things will never truly be the same. However, when he stated he wanted his life back, he meant that he wants things at the times that he wants. He wants to have breakfast with his family in his home and at his dinner table. He wants to sit quietly in the morning and have a cup of coffee without a million people coming in and out of his room. He wants to be able to sit down to eat and not feel rushed to scarf down his food before another therapist comes in to interrupt or take him to another therapy session. He wants to lay down for a nap or escape to a quiet place when he's feeling overstimulated and be able to emerge when he feels ready to face the world again. His expectations are realistic with his abilities, even with therapy and rehab. However, he just wants his life with his family back again. As a nurse, I've heard patients make these statements many times. The loss of independence is grieved as well as one's identity. Especially when things come on suddenly and the preparation for this loss hadn't been established. My husband is a 44 year old relatively healthy person who has dedicated his life to caring for others. Earlier this year he battled COVID-19 and survived. Afterwards has worked tirelessly throughout this pandemic to take care of the sickest of patients including those losing the battle. Now, he has suffered a massive stroke and has survived yet again. This hero, despite everything, just wants to come home. We know this will not be an easy road ahead, but with time and patience we will get to a new normal moving forward. 

One day at a time.



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