Some combination of the cancer and the drugs are certainly not helping. There are a ton of things that need to be done - gathering of information, organizing, prioritizing, putting information together in a way that makes sense for my husband, etc. Not to mention the need to gather my thoughts together enough to write something meaningful down for my various loved ones, so that they have some little bit of me when I am gone.
Unfortunately, just the gathering of info and organizing has become impossibly challenging. I spend hours staring at the same pile of papers, moving them around, trying to force them to make sense enough to deal with them... it's very frustrating, because I know that what took me five hours yesterday (and I still haven't really dealt with them, just sort of tried to figure out what I would do with them later on) would have taken me five minutes last year.
The stresses of having to deal with my needs and his own feelings has left my husband hardly more functional than myself. His body moves like my focus - just vaguely wandering from one place to another, looking at whatever catches his attention and then putting it down wherever he loses interest. The result being that after hours of fretful activity, either very little gets done or things actually end up worse.
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Well, that was written a few days ago, and then I got distracted (are you surprised?), and then we lost internet ability until now.
We lost it because by necessity I moved to my parents' house, and in order to make room for me they had to unplug their office stuff, including the router. But today a very nice man who belongs to this Club of ours that nobody wants to be in (people who either are dying of cancer or who have lost a beloved family member to cancer) came in and set everything up for us. So I'll get a couple more posts out to you, I hope. But probably not many.
In a few short days I've lost the use of one foot completely, it's a useless thing that flops or folds over agonizingly when I try to drag it along with me. I am halfway on the way to losing the other, and feel the beginnings of loss in the hands. First things go numb, then painful pins and needles along with numb - and at that point they are gone, useless. Every day I am feeling things slipping away, right as it happens.
I promised I'd be honest, so here goes. That is not the only stuff that is going numb, and losing muscle power. Front and back, the abdominal areas are starting to go bad, too. And the stuff that is connected to the abdominal areas. At the current rate of deterioration, I won't have many days (maybe tomorrow?) before things are going to get very unpleasant, and very difficult.
Well, things are already unpleasant and difficult, but everything is relative. There's unpleasant and difficult. And then there's unbearable.
I'm at the tipping point here. Every day I can literally feel my functions slip away. My poor right leg will not hold me up very much longer, I think. A day or two, maybe? If I don't end up at the hospital this weekend, I will probably be going there or to a hospice residence fairly soon after that. I don't know if I'll be lucky enough to go fairly quickly after that, or if (it seems more likely) I will have a very ugly period in which I am somewhere between being in very awful pain and being drugged up to the point of a coma (if they can manage it, given how badly I react to just about every drug ever made).
The cruel thing is that what is so obviously the only humane thing to do for our suffering beloved cats and dogs is a mercy that we will not allow our human loved ones. When our kitty started really suffering, we were able to hold her and pet her and let her know that she was loved, she was able to be comfortable and comforted, and then she just went to sleep... just a few short peaceful seconds, and she was gone. She didn't have to get to a point where she was in terrible pain, she didn't suffer the indignities of losing her basic physical and brain functions. She got to be herself, she got to say goodbye, she got to feel our love.
It's a terrible thing that I am facing, and a terrible thing that my loved ones have to face.
It's a terrible thing that I am facing, and a terrible thing that my loved ones have to face.
But we have no choice. It's the one area where I'm afraid we will never agree with those who feel that their personal religious beliefs should be prescribed into law/government for all. In this case, we have a division of church and state except that for some reason other people's religious beliefs are in charge of my life, and my own feelings and beliefs don't matter one bit. We have fits over whether our kids see Santa wandering down school hallways, but it's okay for other people to decide the manner of my passing from this world into the next... I am forced to suffer terribly, whether it's right or not, whether it's MY life or not. Scott and my parents will have to pay for it, both emotionally and financially, even though none of us want it - hospice care in a facility costs upwards of $9,000 per month AFTER insurance pays their bit. If you are lucky enough to have insurance - or to be eligible for Medicare, which I am not. Unfortunately I am not alone there, and some people don't have insurance or kind relatives to help out - imagine someone in my position, but they are homeless. Not a nice thought... and not a nice thing to experience.
So I am lucky in one way - but still, it's hard to look at my present or my future and feel that way.
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3 comments:
Hard quetions but hospice does allow meds that are not talked about anywhere else-it isn't a mercy killing but it is close. Glad you are asking the hard questions and giving everyone something worthwhile to talk about.
You may be experiencing the loss of physical functions but your mind is incredibly sharp! Which I suppose is not necessarily a good thing? How much easier it would be if there wasn't an awareness of the losses or of the pain.
I'm with you one-hundred-percent on the issue of end of life choices.
As for the need to get things done and prepared and organized...do you mean to tell me that we STILL have to do all that crap ~ even as the end draws near??? One would think that perhaps that could be ONE area that you could be spared having to deal with!
Has anyone checked into the option of having hospice come to your (or your parents') home?
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