Powerlessness Revisited…

I got a 911 call from my mom yesterday morning. I was just getting into my work routine, answering emails and the like, preparing for what would be a very hard conversation with a new client. When she called, normally I call her, but I was running late this morning.

“Can you please come over, something is not right with your dad…”

I stammered, “yes of course, I will be right there.”

I live a mile away. I got my purse, let the dogs in and drove over.

He was in bed. Delusional. Shaking violently. This has happened before. I don’t know why UTIs and dementia have a connection, but I can tell you they do. And apparently so can doctors. Since about 2016, whenever my dad, who is diagnosed with Alzheimer’s, gets a fever from a UTI, he becomes somewhat deranged. He sees things that aren’t there, he laughs at things that are not funny, like at all and he is rendered with a pervasive weakness. Like all over, in seeming moments, he can no longer support his own weight.

After at least four of these episodes over the last few years, I knew what I was looking at the moment I got there. What to do? Well, given that he cannot support himself and my mom and I supporting him was not possible, we called for an ambulance. I hate using the first responders like this but we really had no other choice.

They confirmed his fever and took him to our local hospital…where I allowed him to go against my better judgment.

He was taken in, tested, UTI confirmed, and then while we sat waiting for more test results, we were told they would probably send him home. No one asked us if we could care for him at home. The doctor told me the UTI was confirmed and they started IV antibiotics in the hospital. But then while we were still awaiting test results, a nurse came in and told us they were sending him home but it would take awhile.

Then moments later, another nurse comes in (actually she was an EMT II — whatever that means) and she very gruffly removed his IV and all the other machinery that was attached to him. My dad was pissed because she hurt him when she removed the IV and she just continued unapologetically.

Then the other nurse came in with discharge papers and then began the process of getting a man who is not capable of standing on his own into a wheelchair and then eventually our car.

I was consumed with thoughts like:

“How the fuck are we going to get him to the bathroom at home?”

“How are we going to keep him from falling out of bed?”

“Why isn’t anyone but my mom and I concerned about what happens to all of us once we get him home?”

I almost said something to her…but I kidded myself into thinking that once he got home, the antibiotics would do their thing, he would be better and we would only have to suffer through with him for a day or two.

We got him home, into a wheelchair (like I said this has happened before) and into the house. We got him into bed through some summoning of strength I did not know I possessed (guess I am really glad for all the weight training I have done in the past two years). We got him into bed and I thought, ok, he will fall asleep (he sleeps like 18 hours a day at this point) and my mom can get a bit of a break.

But no. He would not stay in bed. He kept trying to get up, saying things that did not make sense…talking to people that only he could see. It was clear within five minutes of being home that there was NO FUCKING WAY this was going to work.

Which was underscored, underlined and highlighted when moments later we attempted to get him to the bathroom…which if it hadn’t been so fucking tragically sad, might have been funny. But it wasn’t. Like at all.

I do not know if you have ever experienced watching a parent attempt to do a task of daily living, standing up in this case, and fail…repeatedly. It is devastating. To you. To your other parent who stands by crushed by her own ineptitude while you stand helplessly by waiting for him to exhaust himself so that we can just swap out his depends and give up on the whole toileting excursion. It took 10 minutes. Ten excruciatingly painful minutes while we stood there and watched my dad, the retired Army Ranger, the Vietnam vet, the guy who ran 10 miles and smoked two packs a day, this inveterate liver of life, fail to be able to move from his wheelchair to a standing position. Repeatedly.

Finally with the exasperation of only someone who is accustomed to being able to handle himself and his body, he collapsed back into the chair and sighed with resignation. We moved him back to the bedroom and changed his depends…with as much dignity as could be mustered for all concerned.

Now as he spasms and tremors his way through a fitful nap, I sit next to him, keeping watch lest he decide that he can get out of bed and fall. I will tell you that today fucking sucks. For him. For my mom. For me. For anyone else who has ever been where we are right now. And for all those who will be there someday.

Thankfully he has a dementia nurse care coordinator. She was fucking amazing. She answered her phone both times we called and she took on the task of telling the ER they had to take him back and they had to admit him. So what would have been a monumental task, became easier. I didn’t want to call an ambulance back, so instead I called someone I know from the program to ask a favor that I wasn’t really entitled to ask. But I did because desperation requires that you suck up your pride and just ask for help.

He came over and helped me rangle my dad out of bed, into the wheelchair and then into the car. It was NOT an easy task. Like at all. I am so grateful to this man for his kindness.

We got him back to the ER and they said his fever had spiked again and the tremors were getting worse. They re-hooked up all the machines, all the tubes and IVs and shit and we waited. Finally we were told he would be admitted but we had to wait for the bed.

Then something miraculous happened. The admitting doctor walked in and was an old friend of mine. It was the only day he was working at the Ojai hospital and it just happened to be the day we were there. I immediately felt at ease. I knew this man, I trusted his intelligence, his knowledge and his doctoring skills. I think I took the first out breath of the day…when he walked in our room.

We got my dad admitted, he was mostly out of it. Sleeping and flailing about but finally the tremors did subside a bit. We stayed with him until he was transferred over to the ward and got him settled into his new room. We debated calling assisted living, again. We decided that we would just take this whole thing one day at a time.

We grabbed some dinner on the way home as neither my mom or I felt up for cooking and then we went to our respective houses and collapsed. I had plans to take a shower, I needed one. But I really didn’t have the stamina or the strength. I was absolutely fucking done in.

I collapsed into bed at 7 pm and was asleep by 7:15 pm. I slept, pretty well until the alarm went off at 4 am. I cursed myself for not turning it off and allowing myself to sleep in a little this morning…but apparently those kind of thoughts are only just beginning to emerge for me.

I didn’t make it to my IOP and I couldn’t keep up at work. And for once, I just allowed myself to take the time I needed. I had mad notions that I would catch up with my day when I got home but honestly I just didn’t have it in me…and was worried that I would just fuck things up more because I was that tired.

Powerlessness keeps coming to teach me things I don’t want to know. I am trying to be grateful. I am trying to be open to the lessons, but I have to admit that I fucking hate it. I do not want to be powerless. I want to be powerful, to power my way through this life. But, if I am really honest, I just do not have the stamina or energy for that kind of living anymore. Whatever armor I used to don to deal with life has faded and now I am just walking around with a very thin veneer. Life actually hurts when it actually hurts today, and I know that is progress.

I bawled like a baby when my relationship ended on Sunday. And I cried in the driveway of my parents house yesterday at the sadness that overwhelmed me. This is a first for me, having access to feelings while the stimulus of those feelings is occurring. I don’t like it much but I do think it is better than crying over shit that happen 20 years ago because I finally feel safe enough to process that bullshit.

While I do not enjoy or like my current life conditions, I accept them. This is what happens. We grow old, we become infirm and we die. And this is also a part of living. And it is ok to have feelings, to cry, to feel despair. This is normal. To not have those feelings while you walk through what we walked through yesterday isn’t superhuman, it would be super inhuman. I got that wrong for a very long time.

So today I am grateful for the pain, the tears, the fears, the messy lifey stuff that happens unexpectedly. I am, very reluctantly also, grateful to be rendered powerless once more. Because I see that it is in my own powerlessness that I am forced, one more time, to seek assistance from my fellow humans and God. I cannot do this alone. And I do not have to. And that feels like progress…again, still.