BARRY’S JOURNEY No. 15
From hospital to hospital to where now?
A person with frontotemporal dementia (FTD) is not someone you want to be around. Hanging out with Barry can sometimes be a very unpleasant experience. I am learning that caring for Barry as he travels on the FTD journey is complicated and full of wrong turns and dead ends. In my last post, I talked about Barry doing quite well while living at a care center. But that did not last.
A few weeks ago, Barry started swearing a lot more and bothering other patients. His behavior got worse until one evening he was supposedly so out of control that the nurses had to call 911 to take him to the hospital.
Who will take him?
Last fall when Barry was still living at home, my social worker advised me that If Barry ever got too hard to handle, to call 911 and they would take him to the hospital. And when the hospital wants to release him, she told me to say that I can’t handle him at home anymore — then he would be placed somewhere. I had no idea his care center would try this very same thing.
I never called 911 all the while he was at home, even though there where moments when I felt totally overwhelmed. But I should have known this tactic could be used by the care center because this was exactly how his assisted living place in Edina got him moved out for good! Barry was too much work — so rather than work with him and me, they sent him to the hospital. When he was deemed good enough to go back — first to the assisted living place then later to the care center, neither would take him back.
Barry’s agitated behavior usually starts in the evening. This is called Sundowner Syndrome because Alzheimer and dementia patients often get confused later in the day. This is so common that you would think the caregivers would know how to “redirect” Barry as they had taught me to do. Sometimes I believe that their not wanting to keep him in their facility comes down to money. I wonder if it is because Barry is on medical assistance and someone on private pay needs his bed, that the facility tries to get rid of the irritating FTD guy on medical assistance? I hope this is not the case, but I’ll never know for sure.
So that evening Barry was taken to Methodist Hospital where he was put in a locked room with nothing in it but a bed and a blank TV. Of course, Barry was confused and scared. So he was swearing! When a doctor finally arrived, he told us that the hospital didn’t take dementia patients. So they sent him back to his care center with a dose of something to help him relax. But the next day, he acted up again and they sent him to another hospital that also did not take dementia patients. Finally he was sent to Unity Hospital in Fridley that has a geriatric psychiatry unit where they could work on his medications. They did a great job and after two weeks, they found a better balance of medications. During a few visits, Barry and I actually had some conversations where he was engaged! I was hopeful!
On the Sunday before Memorial Day, Unity Hospital suddenly decided to ship Barry back to his care center. I was told that under medical assistance, your bed at a care center can be held up to 18 days, but after that you lose it. As I look back, I should have asked the hospital to keep him until after the holiday, but the bed-hold had me nervous. I also should have been there when he arrived back at the care center, but all my family was celebrating a late Mother’s Day at my sister’s farm, and I just wanted a day away from hospitals and the care center.
Taking a page from Barry’s playbook
Barry lasted only an hour-and-a-half back at the care center before they once again sent him to Methodist Hospital! At this point I went nuts. I yelled at nurses and social workers at both hospitals and the care center by phone as I drove back into town. And I threatened to call my lawyer! (What lawyer?) I thought I would lose my mind. At one point, I took a page from Barry’s playbook and yelled F*** you at a social worker. I can understand why Barry says that so much. FTD is so damn frustrating and confusing that sometimes it’s the only word you can come up with!
When my son Mike and I got to Methodist Hospital, we found Barry in the same room, standing inches from the same locked door, confused and really, really scared. I had a lot of questions — first of all, why did they send him back to a hospital that didn’t take him the first time? Where would Barry go now? Why was Barry so agitated at the care center? Did something happen to him there? Who in this town can handle a man with FTD?
What was I going to do now? To be continued …