Pain

I had a dream last night, which I mostly can’t remember. The hazy upshot: once again we had only thought things with dad were settled, and whatever had just happened in the dream (him coming back to life? more and new medical issues? a demanded change in his living situation? I can’t remember…) meant I was going to have to start brainstorming, troubleshooting, solving things again. And my reaction to this in the dream was simple: I was steeling myself for the fight.

The worst day of my life, so far, is the day I signed my dad into a nursing home. I’ve never before or since had the experience of not being able to physically get out of bed because of emotional distress, but the day after we got dad to the nursing home, I was supposed to go to work (I do occasional bookkeeping outside the home aside from my MIL’s business). It took me hours to get up; I was so late (luckily they were understanding). Moving slowly, tears just kind of falling randomly the whole day (they put up with that, too—kindness). In fact, that went on for a while, the crying. That was in December 2016, and I think it was March or April 2017 when I was talking to a friend, saying I was doing better, and Jack said, “Yeah Mom, you’re not sobbing all the time anymore.” Reality check—I honestly didn’t think that I had been that dramatic about it, but your kids know, and they don’t mind saying it.

Whatever I have gone through, multiply that by at least 100, and we might be able to grasp a little of what my mother has endured. Six, maybe eight years. When she finally really let Michael and I in, and allowed us to take over some of the responsibility, it was teetering on too late. I don’t think I’m ready to talk publicly about the gritty details. The situation had become dangerous in many ways.

We worked with a gradually downward-progressing situation the fall of 2016. From truly awful, to worse, to worse again. Until finally we thought he was dying, and Michael and I had persuaded Mom to stop the futile effort of trying to keep him home. It had become physically impossible. Let me just say, it was impossible before that. Mom would later describe it like this: their life was the frog in a pot of cold water, and slowly but surely, they were brought to a rolling boil.

There are things worse than dying.

Dad knew some of those things intimately.

I’m going to briefly touch on this here, because if you don’t know what happened when we put him in the nursing home, it’s really hard to explain what I feel now, being able to express myself here.

In the weeks leading up to the nursing home the dementia became too intense to describe, and with it came tiny moments of bizarre clarity. He came back. My dad. Sometimes I would be a child again to him, sometimes a teenager, or just married; he was very confused, but he was my dad again, and his eyes changed, his tone of voice changed during these brief times.

And then, he was just really gone, and physically could hardly move (his Parkinson’s maybe added in?). It took multiple hospital trips, and an act of God (also acts of courage by my brother, and absolute support and endurance from my mom, and also my uncle) to get him to the nursing home.

Within days of being there, he became better than he had been in years. Was it the environment? Consistency of medication? Over the next weeks and months we found that he would return to us, only even more intensely, and then dip away again. His memory was totally chaotic, with no memory of what had happened at home, spotty otherwise, but his eyes would be different, his face was different, he totally trusted us, and was grateful and understanding. These moments might last a few days, or only a few hours. I began to see it as torture for him in some ways. Sometimes it was healing. I had lost myself, and somehow his presence was restoring parts of my identity. Then he’d slip away, and I couldn’t ever seem to prepare myself for that part.

One of the first times I really dealt with his full-on return, I had gone up to the nursing home by myself, taking care of things, and spending a little time. And I remember thinking, “this is what it would feel like to have your loved one come back from the dead after six years.” It was like being ripped in two. The pain was so intense, it was physical. I wanted him back so bad, but I had not been allowed to feel that (that’s what dementia does). Looking in his eyes broke me. We had all been good about hiding emotions around him (and also not around him), but tears started rolling down my cheeks. I just hugged him. Hard. I left that day balling across the parking lot. Wondering “WHY?” on so many levels.

I am so sad, I’m crying little bits, here and there, even last night putting Bear to bed, and today a few times so far. Missing my daddy, missing him from 10 years ago, missing the bits of painful perfection we had with each other this last year and a half, missing him enjoying my kids, and vice versa. This hurts, and it will hurt more. But right now, I don’t need to steel myself for anything else. I need to start relaxing my gut. This pain is blessed to me. I needed it, I needed permission to feel it. To be able to even say anything about it. And this time, losing him, I know what to hang on to. I know how not to lose him. He is a part of me.

 

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