BARRY’S JOURNEY No. 20
taking care of Barry
Barry is getting stuck
Something new is happening with Barry. He is getting stuck.
The first time I noticed it, he was looking at a magazine when the subscription card fell out. Barry reached down to grab it. I was busy answering emails on my computer that I sometimes bring when I visit. I looked up a few minutes later and saw Barry still trying to pick up the card. I watched for a few more minutes while he stayed in the same position, bent over reaching for the card. Finally, I asked, “Are you stuck?” Barry replied, “I’m stuck.” I told him to sit back and helped him straighten up in his chair. This is new and really confusing. Is his brain not telling him what to do next? Can he not follow the steps to finishing what he sets out to do? How do we deal with this?
When I arrived at the care center a few days later, I found Barry in a plank position across his bed. His arms were shaking. I had no idea how long he had been like that. I said, “Are you stuck?” He could barely speak but said, “Yes!” When I helped him stand up, he was scared and exhausted by the ordeal. It must be frightening to realize that you have no idea how to move on to the next step. Poor guy!
I alerted the staff to check on him more often and asked if they had ever seen this before in patients. No one seemed to understand what I was talking about, but everyone agreed to try to check on him more often.
The next time I came to visit, I found him stuck trying to drink water with a straw out of an empty glass — and he had no idea how to stop. I asked, “Are you stuck?” He said, “I’m stuck!” The good news is that I can ask him a question and he can answer me. That is a good thing right?
But I can’t help thinking — what’s next?
As hard as it is to “be in the moment,” there’s not much choice. Looking ahead can swamp you. Courage, Nancy. Courage.
Being with you on this journey, Nancy , is not the same as being on the journey … Thank you for sharing with such grace as I cannot imagine what it is like for Barry to be stuck and for you to have to figure it all out. Please know you can call anytime and talk to mike – and I really mean it. Day by day – thinking of you
That is a good thing. What is next is an unknown. Everyone’s journey is different so even if I told you it likely wouldn’t be right. Thank you for sharing your journey.
Yes you have grace Nancy! That says so much
Thinking of you Nancy, and thinking of Barry. You are doing such a good job of figuring out what he’s thinking or what’s happening to him.
I honor your candor and the humility you bring, telling your family’s story of loss and change and the emotional roller coaster that comes with “what in the he.. is happening now and who would possibly understand if I told them.” I walked your foggy journey with several patients and families as a nurse supporting the care planning for the newly diagnosed and those with moderate to severe disability, no two journeys ever the same. I lived the life as the caretaker of my husbands grandmother who suffered from dementia and needed a loving, safe home after her husband died- a task we assumed while raising our three (1-3-5) at the same time. That story has the makings of a good book itself. Lastly. I managed a memory care assisted living complex in St. Paul for patients who had Louie Body or Fronto Tempero Dementia in particular so came to better understand what those diseases bring to the patients in terms of challenges and what does and does NOT work. All of this being said, while I befriended hundreds of families, your writing tells a more intimate and honest story than I could ever capture as a caregiver and I thank you. Heidi