I wanted to share how Gene’s birthday visit went on October 14.

There were some genuinely encouraging moments. Gene remembered that it was his birthday, recognized me, and asked me several questions. We had the longest conversation we’ve been able to have in quite some time.

His hearing, however, continues to make communication extremely difficult. I used the Notes app on my iPhone to write messages for him to read, and he appeared to understand what I was saying that way. Even so, he remained quite drowsy, despite the gradual reduction of his Seroquel.

At first, he was happy and eager to communicate. Then things changed abruptly.

When Gene realized I hadn’t brought the chocolate-covered strawberries he had asked for, he became extremely upset. He began crying, yelling, cursing, and accusing me of deliberately withholding the treats to torture him.

I tried repeatedly to explain that he had failed his swallowing test and that his doctors had prohibited him from eating or drinking. The concern is that he could choke or aspirate food or liquid into his lungs, with potentially life-threatening consequences. I wasn’t refusing him something he was allowed to have. I was following the medical instructions intended to keep him safe.

But I couldn’t seem to get through to him.

Eventually, I gave him a break and wrote him a letter explaining why I hadn’t brought the strawberries. I hoped that, by reading it, he might better understand that I wasn’t trying to hurt or deprive him.

When I returned, he had calmed down. He smiled, asked me to turn up the television, held my hand, and eventually fell asleep.

It was a difficult experience, particularly because the visit had begun so positively. Gene was recognizing me and engaging in a way I hadn’t seen in a while, yet he could still become intensely distressed when he couldn’t understand what was happening or why something he wanted wasn’t possible.

His hearing loss makes all of this harder. I can write things down, but I cannot be certain how much he is able to absorb in moments when he is drowsy, upset, or confused.

I came away encouraged by the conversation we shared at the beginning of the visit, but also reminded of how fragile and unpredictable his mental state remains.

For now, his swallowing restriction is still in place, and we have to respect it. I only wish I could make Gene understand that the things I cannot give him are not being withheld out of indifference. I’m trying to protect him, even when he cannot see it that way.

Thank you for taking the time to read this.  

Alexa