With everything I’ve seen and now know about my mother going through in the past six months, as her dementia has been worsening, some days I just want to pretend the word doesn’t exist.
While visiting my mother in Florida last month, to discuss assisted living with her together with my brother, I remarked to my brother that sometimes I think it might just be easier on Mom when she no longer remembers her life before the assisted living home…when that’s all she knows and all she remembers. Then the losses and the lack of independence and control might….*MIGHT* just be less frustrating for her because she won’t know anything else but that.
Mom has spent a couple of nights in the hospital following what appears to be another issue with her blood pressure or the regulation of it. I’ve long suspected internal bleeding is leading to what’s going on with the spikes and drops for her, but it is as yet an ‘undetermined’ thing. Hopefully testing will illuminate whatever the issue is. Hopefully she’ll have one less struggle to contend with and not have to be hospitalized over and over again.
Last night her physician agreed that a mild sedative might help her relax after a stressful realization that she was not being released yesterday. That was at six p.m. At ten-fifteen p.m. my brother received a call from mom saying they were insisting they were moving her to another room and she had refused and they told her it ‘didn’t matter’ that she was refusing, that it was ‘happening anyway’.
This escalated further and further to the point where when my brother arrived at the hospital at ten fifty-five, there were five nurses who had converged on Mom in her room and she was angry and lashing out at all of them. I’m not wishing to give nurses a bad name. I know plenty of them. They do a job that can be miserable to do…and my mother is certainly not the easiest patient in the world. So this does not pertain to all nurses…just the ones who were in Mom’s room last night….none of whom seemed to understand that Mom has dementia. None of whom could answer the simple question of ‘has she had a sedative yet’. None of whom seemed even remotely concerned with aggravating an elderly woman with repeated blood pressure issues instead of simply stepping back and letting her calm down and perhaps revisiting the move in the morning when she’s a bit more capable, cognitively, of understanding it and perhaps can have a discussion with my brother or even with me as to why it’s necessary, instead of having five persons who she doesn’t know and doesn’t trust shrouding her like a lynch mob. I have no medical training, but I really feel quite confident in my belief that that wasn’t good medicine.
I’m also more than a bit put out that it took five hours to administer a sedative to her. Mom is 84 years of age. No, she’s not the highest priority patient there…no she’s not the most congenial person there…yes there are circumstances that cause delays…but five hours? In that amount of time, I could have flown to Florida and given her the frigging injection myself.
This, the worsening of her dementia and the loss of independence and control over everything for her, is – based upon my mother’s personality and history, absolutely the worst possible way for her to end out her life.
I have seen, over time, many people posting on social media ‘Fucking Cancer – Cancer Sucks’…..and it does. So does dementia. Not only for those who have it…but for those of us who watch our loved ones go through it and know there’s just nothing we can do for them as we watch them continue to spiral down into a fog of uncertainty and fear. We stand by and watch someone who bases 99% of their identity on their strength and independence and everything they struggled with and overcame in life….and then along comes dementia and says ‘Guess what? I’ll have the last laugh…..I’ll work my dark magic on your mind, and no matter how strong and capable and independent you THINK you’ve been, you’ll wind up shaking in a corner because you won’t know who the fuck anyone or anything is…..you won’t even know where you are or how you got there…and when you try to figure that out, you’ll have forgotten exactly the steps you might take to HELP you figure that out, and there’s not a damned thing you nor anyone who cares about you can do about it…so take THAT, Ms. Independence….’
My mother has spent months in denial that she has dementia. At first that frustrated me because she was not treating herself for it and taking care of herself and it made trying to assist her all the more difficult because in her mind she didn’t need it…she was fine. I’m beginning to think she had something. I’m beginning to think I’d like to pretend it isn’t happening to her too. I just wish I could delude myself into believing it…even for a day….an hour…..a minute. Anything. I wish I could have that plausible deniability and behave as if none of this is happening to her, but I can’t because the worse it gets for her, the harder it gets to watch it, and it becomes near impossible to not think about it and worry about it and want to find someone to take it out on and to blame. To find anyone to scream at about it and make them feel even a fraction of the misery that she’s feeling. That I’m feeling for her. But I can’t. I can’t deny it. I can’t forget it. I can’t pretend it doesn’t exist and isn’t happening.
I guess I’m not that good an actor after all.