Two very dear friends have lost parents recently. We had dinner with one of those friends a few weeks ago and her husband made a comment about the fact that they’ll have to go through this three more times. Which made me think, “Oh shit, my parents were divorced and we’re quite close to my stepfather, so even though I lost my dad a few years ago, we still have to go through it four more times.”
We talked about our friend’s mom and about my dad and about hospital visits and picking up pieces. Tough stuff that’s been on my mind a lot lately.
We talked about the virtues of short hospital visits with breaks in-between vs lengthy bedside vigils. My take-away was that the short visits, at least with respect to parents, are better because it’s more likely that you will be able to connect with your loved one without slipping into pushing each other’s buttons. I’m tucking that thought away for future use, but it also has helped me deal with some guilt I had over my father’s death.
Dad was diagnosed with a disease called primary progressive aphasia about six years before his death. It’s a communication disorder that comes on gradually, so Dad slowly lost the ability to communicate. First the ability to find a particular word and eventually the ability to produce almost any meaningful words. Or to understand them.
Dad’s communication skills weren’t great to begin with, but as his ability decreased, his desire to communicate increased. When I called home from college (my parents didn’t separate until I was a senior in college), almost the first words out of my dad’s mouth would be, “Well, here’s your mother.” After his diagnosis, he wanted to talk to me on the phone. Here’s a typical conversation at about three years after the diagnosis:
Me: Hi Dad. How are you doing?
Dad: Uhm, okay. Where uhm daba live now?
Me: We moved to Seattle. We really like it here.
Dad: We (Dad and my stepmother) uhm went there uhm daba one time. Uhm supposed to uhm rain uhm lots, but dada didn’t uhm reruhm rain uhm whole time we uhm er were daba there. Hahahahahaha
Me: Yeah, Dad, that’s funny.
Dad: Where do uhm uhm…
Me: Where do we live now?
Repeat four or five times until my nerves were too frayed and raw to continue and I’d cut him off and hang up. Sometimes he’d vary the question and ask what my major was and I’d have to tell him that I graduated a long time ago. Or I’d just tell him it was biology or math. At least it was a glimpse of him, though, because that’s a question he used to ask me all the time: “What’s your major this week?”
And here’s a typical conversation at about four years after diagnosis:
Me: Hi Dad. How are you doing?
Dad: Uhm, rer, hum. Whe, whe, where?
Me: We’re living in Seattle now, Dad.
Dad: Dabadadaa humerumhum rain. Hahahahahahaha.
Me: Yeah, it does rain a lot, but it didn’t on your trip out here.
Repeat until I was too close to tears to continue.
October of 2004 was a little over six years after his diagnosis. Under pressure from various factions, chief among them my mother, I went to Colorado for a visit with my dad. Though he was gaunt, he was surprisingly physically fit, still going for long bike rides and walks. He was also sliding into dementia and occasionally becoming violent. I didn’t get a true picture of it until I got there, though.
Here’s a story I wrote for a creative writing class not long after that trip. The class focused on writing for children, so I made the protagonist a senior in high school. My husband took the trip with me, but doesn’t appear in the story because, ew, she’s 17. I don’t have a sister, I have one brother. There was no phone call with my mom and the picture my dad was carrying around was actually of my nieces. Other than those things, it’s a pretty accurate account of that visit.
Dad’s episodes of violence increased so that, in December of 2004, my stepmother had to put him in a residential facility. As I mentioned before, Dad was still very physically fit. The only adult residential facility my stepmother could find was mostly comprised of elderly patients with Alzheimer’s. In January, Dad got angry about something and turned on one of his caretakers, putting him (the caretaker) and two residents in the hospital. (Not trying to excuse what he did, but I do want to tell you that they all made it out of the hospital with no residual physical effects, as far as I know.)
Dad also went to the hospital, the emergency room, in restraints. In the ER, they discovered that Dad could no longer swallow. When it became clear that he wasn’t going to leave the hospital any time soon, my stepmother became worried that she wouldn’t be able to take her planned trip to Europe to visit family there. So I told her to go on her trip and took 10 days off of work to go stay with him.
Which brings us to the guilt I spoke of above. I went to the hospital every day I was there save one – there was a blizzard that day and I didn’t feel safe driving in it. I may have learned to drive in Colorado, but I hadn’t driven in snow for more than ten years at that point. To be completely honest, I probably could have gone that afternoon, but I didn’t want to. I kept my visits brief, an hour or two at a time. Most of the time he didn’t know I was in the room. When he did, he often didn’t know it was me. I spent my time wetting down his dry, cracked lips. When the nurses weren’t around, I would take his hands out of the restraints. He was withering away at that point, couldn’t have weighed more than 100 pounds. He spent most of his time trying to get his Texas catheter (sort of like a condom with a tube in the tip) off. He was successful several times and I had to put it back on. Once when I was putting it back on, I got a phone call from one of the doctors I worked with at the time who had a question on a grant submission. I think it’s safe to say that was the most surreal conversation of my life.
The palliative care doctors came to see me while I was in the hospital with Dad. He still wasn’t swallowing and they would have to do something other than feed him through an IV soon. They considered putting in a GI tube, but didn’t recommend it because he was likely to just pull it out and that would cause new problems. They set up a meeting with my stepmother’s brother, who had power of attorney while she was gone, to discuss it and asked me to be there as well. I knew she would be concerned about it, so I called my stepsister to let her know about the meeting. She showed up adamant that we needed to do everything possible to get him well enough to go home. The doctors tried to explain to her that he wasn’t going to get better. Even if they could manage to feed him and get him to improve a very little physically, his mind was not coming back and he would end up in the same place very soon. She wasn’t having any of it. I told her about a conversation I had with Dad a few years before he got sick. Dad told me flat out that if he was ever incapacitated he wouldn’t want to continue living on life support. Then she ambushed me with a venomous tirade about how I couldn’t possibly know what he would want because I hadn’t been around enough, hadn’t participated enough to know him. I didn’t retaliate, which I have mixed feelings about. She obviously needed to get her anger and frustration out and she certainly did. I can’t fault her for feeling strongly about my dad. On the other hand, she had known my father for about eight years, at least four of which he was unable to communicate. I had some pretty strong feelings of anger and resentment of my own, but I kept them inside rather than spewing them all over her. In a room with four other people in it. I’m not sure which approach is healthier, probably somewhere in-between.
I feel guilty for not spending enough time with him while he was in the hospital at the end. After the conversation at the beginning of this post, however, I’m starting to look at it a little differently. He wasn’t lucid for most of the time I did sit with him, so that time wasn’t really for him. It was for me. And the fact that I spent a lot of time sitting in the car in the hospital parking lot weeping uncontrollably probably means that I had hit my limit.
I still feel guilty for not reaching out to him very much during the six years after his diagnosis. That could be a reason my stepsister’s words hit me so hard. He didn’t really reach out to me, either, though. He had his new family and they all seemed to be fine with that.
I’m not sure who invented that word: guilt. But I’d like to punch that person in the face. There is NO point to it, there is nothing to gain from it, there is just NOTHING there to help us.
Let whatever guilt you still have go. It won’t make anything better, but I can promise you, when you realize that you did the best you could with what you had, and you know that your father was aware of this, on a very basic level, that acknowledement WILL help. Our healing begins once we’ve let go of the negative, and guilt is all about the negative.
(Let me know if you got the e-mail with attachment. I don’t need to hear more than that, just that it arrived. Thanks!)