Suddenly to the hospital
As I write this in April, I look back to January when I made the decision to move Barry into an assisted living facility. I thought it would be a breeze, and he would be safe and cared for. But things can change quickly with frontotemporal dementia (FTD).
I got through February, which is I Love to Read Month and my busiest time of year. But I started getting calls from the assisted living place saying, “Barry won’t do this or that, and Barry keeps getting out.” (He had figured out the alarm doors pretty quickly.) With only one bath a week given by the nursing aides, giving him a shower was up to me and I could not handle him. Once he fell in the tub and almost hit his head as he tried to escape. Another time they called me to help get him dressed because they couldn’t handle him. It was a horrible scene when I arrived. Barry was naked and had had a toileting accident. It took all my strength to get him cleaned up. I thought that the staff was supposed to assist with this. That’s when I realized that this was not the place for him, and all the peace I felt at first disappeared.
The issue with choking
Barry was still going to the adult day care three days a week. On those days, I knew he would be OK, and they would clean him up if he needed it. But then one day the daycare staff called to say that Barry had choked on his food during lunch. I knew that people with FTD lose the ability to swallow, a fact I had learned during an FTD conference I attended at the Mayo Clinic.
The conference was very informative, but no one spoke about how a person dies from FTD. So at the end of the conference, I raised my hand and asked. That’s when I learned about choking – a person with FTD eventually loses the ability to swallow. The experts also talked about other complications, but I had stopped listening at “they lose the ability to swallow.”
And things get worse
Because I was out of town so much on speaking engagements and not available during mealtimes, Barry actually stopped eating and drinking. Apparently he was not being assisted in his assisted living facility with eating. He quickly became dehydrated and weak. The staff called me as I was driving home from a speaking trip to say that Barry had been taken to the hospital by ambulance in a weakened, confused state, maybe dehydrated and unable to swallow.
I am sorry to admit that when Barry’s FTD was getting bad, I wished he would die. But now as I drove in a panic to the hospital, I didn’t want him to die — at least not yet! I couldn’t help but wonder if he wrote that love letter to me because he knew he would die soon. With fluids for dehydration, his confusion improved to where it was before this episode.
But he was still not eating. I know he is scared to choke to death. His doctor decided then to take Barry off some of his behavior control medications to determine his current state of . Still weak, Barry was sent to a care facility – what we used to call a nursing home. There he became a bit stronger and worked with a speech therapist to learn to swallow again. It wasn’t a week later that the assisted living facility called saying Barry could not return.
Was this care facility now his new home? At the same time, I was moving into a new apartment and now I would have to move Barry as well.