I’m being haunted by the last visit with my father. It didn’t feel so bad at the time, mostly because I think I was so numbed by it, but it has been creeping up on me over the last few days, giving me nightmares, making me dwell on events...
My father has frontal lobe dementia. It’s not the sort of dementia that you see on TV and in films. Not like Alzheimer’s where they’re mostly lost. It increases aggression and paranoia. Language skills don’t diminish as much, personality is not as lost, but rationality is gone and there is a lot of sadness and anger.
My father has been in nursing homes for about a year now because he was too aggressive with my mother and we were worried he would get physically violent, something he has never done in the past but had been threatening to do for a while. We were right to worry, because he was kicked out of his first nursing home for getting in a fight and then trying to assault a police officer. Most people would be in jail for that, but his dementia saved him from there. The problem is that there is almost nowhere here in Indiana that will take a dementia patient who gets violent. The closest we could find to my home in Terre Haute and my mother’s in Bloomington is a facility in Morgantown, about 90 minutes from my home and 45 from hers down some windy roads which won’t be especially fun to drive on in the winter. Despite that, I did my best to visit him at least once a week.
He would always cry when I came to visit him, but he seemed to be improving a little in terms of calming down and having a real conversation. Of course, it was a very simple conversation, mostly family updates, and it would be punctuated by his psychosis and paranoia, but there was still something there to communicate with. The time before last, though, things had changed a little.
I already knew that my mother was triggering more aggressive behavior in him. He seemed to blame her for him being in the facility and had transferred all of his anger to her directly. She bravely kept coming to see him despite that, which I really admire her for, but she would understandably leave quickly if he got mean. He never talked to me about this, I would only hear about it from her, and I didn’t really want to bring it up when I was visiting- why make things unpleasant when he probably doesn’t remember doing it?
The time before last, however, he was telling me all about how my mother didn’t love him and didn’t care for him and would not accept any denials from me. His mood never improved and I was only able to show him photos of his granddaughter for a few moments before he went back to crying. At one point, he asked me to leave, I made sure he really wanted me to, then started walking out. His crying got louder and louder and the nurse yelled down the hall telling me he’d changed his mind, so I stayed with him until he calmed down and asked me to leave again. He didn’t change his mind a second time, so I left.
Then we come to the last time I visited him, a few days ago. I knew things had already been really bad with my mother. He threw a can of his favorite Heinz baked beans at her, screamed at her to take him home, talked about how he would never leave the place he’s in- the first time he’s seemed to be aware of that. After she left, someone from the facility called her and asked her not to come so often because it was making him too upset.
Of course, that made me even more determined to visit him regularly, especially since he was never aggressive with me. I assumed she was the big trigger, that he related to me on a different level since I was his son, not his wife. I made sure Violet was going to be in after-school care, started up Spotify and put on a good playlist of singable songs (singing while driving helps calm my stomach butterflies I always get about visiting him) and made the 90 minute trek to Morgantown.
When I got there, he was asleep in a wheelchair. He doesn’t necessarily need a wheelchair- he can walk, albeit slowly, but I think he often just sits in them because they’re convenient and there are a lot of them around. I gently woke him up, got right in front of him and smile to say hello, which I always do to help him know for certain who I am. As usual, he took a moment to recognize me, then smiled at me and said, “I can’t believe it’s you!” Then gave me a big hug. As usual, he started crying right away and repeatedly telling me how he couldn’t believe I was here while I reassured him that I was.
Everything was progressing as normal in the first few minutes. He slowly stopped crying, kept telling me how he loved me, how he couldn’t believe it was me, then he finally seemed calm enough to get up to use the restroom. He handed me his book- The Count of Monte Christo, one of his favorites- and had me wait outside for him. When he got out, his mood had changed.
He was telling me how terribly my mother had treated him. I said to him that he was the one who was not treating her very nicely, telling him that I heard he threw a can of beans at her. He didn’t deny it, he just kept talking about how terrible she was.
“She won’t tell me when I can leave here,” he said.
“She doesn’t know and neither do I.” This is true. We have no idea when or if he can ever leave. It will only happen for certain if he becomes too infirm for his aggression to be a risk to staff and other patients.
“I have to get out of here,” he says, “I have to be free!” He repeats that last part over and over again. I feel horrible. He is, after all, in a sort of prison, and one that he’s in due to his illness, so he can’t understand why.
I explain to him why he’s there- that he tried to assault a police officer, that he got in a fight at his old care facility, that if he can get his aggression under control, he can leave, that he’s lucky he’s not in jail.
None of that matters. “If I don’t get out of here, I’ll kill myself!” This doesn’t actually scare me. He made the same threat to my mother, then tried to choke himself to death with his own hands- something which is not actually possible to do since you pass out before you can die. So, I’m not scared, but I have no intention of standing there and listening to his threats. I tell him that I’m leaving if he says it again.
He says it again. “If I can’t be free, I’ll kill myself!” I tell him goodbye and I leave and he shuffles slowly after me apologizing and saying, “please, I love you!” What could I do but stop and go back. I give him a big hug and tell him I love him too, but I’m not going to stay if he says anything about killing himself.
“You don’t love me,” he yells at me.
“I’m also not going to stay here if you’re aggressive or say things like that.”
“I’m not aggressive,” he yells. This is the sort of thing my five-year-old says when we tell her she’s grumpy. “I’m not grumpy! I’m just fine!”
He hugs me again and again says that I don’t love him. I tell him that I’m also going to leave if he says that again. “Say what again?”
“That I don’t love you.”
“I never said that! You’re lying! I don’t believe you!”
“I am not going to stay here if you’re going to be aggressive.”
“You don’t love me!”
I harden my heart, determined to leave this time. I pull away from him, tell him I love him but I can’t stay and turn around to leave. He gets angrier and angrier, coming after me as quickly as he can (which is zombie-like shuffling), yelling, “if you go, that’s it! I’m going to kill myself! You don’t love me!” as the nurse grabs him and pulls him back. I am entirely numb and it doesn’t even affect me. Outside the facility, I have a very calm and friendly discussion with a woman who works there about how I also shouldn’t come as often. Maybe once a month. I agree.
Get back in the car and start the drive to my mother’s house, which I always do after I visit my father. It adds a little bit more driving time, but I always need to see her after I see him. We support each other and we really don’t have anyone else we can talk to about it who has actually seen what he’s like. My brother made the decision, which we support, not to see him in the state he’s in to preserve the good memories he has of him. I won’t let my wife and daughter see him like this for the same reason. At the time, I felt a lot of aggression myself, so I put on the soundtrack to Sweeney Todd (the good Broadway version with Angela Lansbury) and feel every angry note as I sing along with Len Cariou’s murderous barber.
By the time I get to my mother’s, I have calmed down considerably and she has a friendly visitor, so I am distracted introducing myself and having some chatter about various things. When the visitor leaves, I’m able to relate everything without getting upset, putting my emotions aside, feeling, at the moment, all right.
The facility calls my mother, in part to tell her that the psychiatrist was changing his medication yet again, not that it will change things. How can drugs fix permanent brain damage? They sure haven’t so far. They also tell her that after I left, they had to put him in restraints and give him a shot of Haldol to calm him down.
For the rest of the day, that’s all I can think about. I realize logically that it’s not my fault, but the emotional part of me, and that internal voice I’ve always had that tells me all the nasty things about myself when I’m feeling depressed keeps repeating to me that I made my father so upset that he was restrained and sedated.
I have had nightmares every night since. Not about him or that situation, but I know exactly why I’ve had the nightmares. And I am haunted by the memory of him shuffling after me as I leave, getting held back by the nurse. The memory is so vivid, but at the same time distorted. It always feel like I’m in a zombie movie, being chased by the former loved one who has become a living corpse full of darkness and anger shuffling at me.
Every time my mother calls me, a small part of me wonders if it’s the call saying that my father has finally died. It used to be a fear that it will, but it’s becoming a fear that it won’t. I’ve said this before- if euthanasia were legal, that would be the most merciful thing. Clearly, even he thinks so.
I force myself to spend some time with my family as much as I can. I love them, but I don’t want to be around anyone at all these days. I don’t really have any close friends in this town, they’re all in Bloomington, so it’s not hard to be a hermit of sorts. Besides, every time I go out, I get this feeling that he’s still behind me, shuffling after me, yelling that I don’t love him.