Tuesday, June 4, 2013

A long pause in the editing process.

I have been very busy with both parents being troubled with health problems. This has caused a pause in almost any normal activity as I'm doing a lot more caregiving with both parents.

Needless to say my going out to observe the stars at the observatory has been impacted. Also I've not made any moves on doing more editing work of any other Cornerstone bands that I shot at Cornerstone. I have a finished Choir edit that is pretty good and I ripped a DVD for them, but I haven't sent it off.

I want to make a quick trip to Chicago sometime and show the edits to jpusa and leave a DVD of the stuff I've shot so far. Unfortunately I haven't found time to do that either. And I'm not making a lot of progress in editing the other bands footage, which is a bit of a bummer, needless to say. You'd think that one could edit a band a month and get twelve artists concerts finished in a year. That even seems slow and a slow pace. So far all I've done is five acts from the gallery stage. I'm even off the pace of editing which is one act per month.

Things like this can happen. Right now my focus is trying to find enough time to get a better setup at the house for mom. She needs a better setup for her health troubles than we've been using for the past ten years. The health problem and coping process has progressed with little things being added and added over and over again, without a reduction and simplicity needed with a more proper systematic approach. Systems design and efficiency are not necessarily a strength to the elderly when coping with chronic diseases and pain. They often end up adding a little thing here, and a little thing there in their effort to make things easier. They end up adjusting their lifestyle and adding little things, usually cheaply and simply done. One ends up with a cluttered mess and approach, that makes perfect logical sense to the elderly person or patient. They end up with all kinds of things in their living room or bedroom for example to get what they need and reduce the amount of walking or travel they need to do. In the case of my mom she has severe foot pain and it really limits her ability to walk. This causes her to have to have everything within reach. But one problem is everything she needs is often not in reach but just out of reach. So she may have 90 percent of what she needs and maybe 30 percent of things she likes and wants, but not 100 percent of what she wants. So she will end up asking for things that she needs but are just out of reach and to difficult to gather. And these things will be needed every ten minutes or five minutes or two minutes, especially during a setup task like getting into a chair, getting out of a chair or going to the restroom. These things and the very difficult environment we've been forced to accept due to the extreme pain and need for cooling of her feet cause a lot of requests and are a severe restriction to the caregivers.

Couple that with possible mental issues or side effects from drugs and it's enough to drive caregivers crazy at times. My father and I end up burned out, tired and hurting ourselves due to the extreme nature of care required. It's basically like running an Intensive Care Unit from your house, with the only nurses being my father and I. Needless to say, some normal things that we would like to do, like vacuum the house more, clean up the house more, take care of the car, just basic things end up going undone, because we are so busy with the frantic and almost constant demands and requests. Most of the requests end up being demands. And that wears on the nerves. At times it seems like the inmates are running the asylum.

In any event it's difficult. And at times of course trying of ones faith. Because we believe and have seen miracles, sometimes we hope for one or wish for one. But what do you do when none are available, or they are seemingly blocked? I can recall one of my friends saying it's easy to have faith when God is working and you are seeing miracles. It's much harder to have faith when nothing is happening. In those times your own faith is tested. Of course caregivers are often struggling with possible emotions and guilt of not being able to do better or be there more. With the nature of these problems, my mom sometimes seems like the most difficult patient in the world. But I know that's just our perspective and there are others out there in worse shape. In any event it becomes a long term test or trial. Almost like your waiting on someone who is injured in the battle field. Or maybe trying to get some relief for someone in prison who is being tortured continuously, The analogies can continue and at times I've used some colorful ones which are both humorous and sad at the same time.

One time I said, it's like I dealing with a terminator of pain. Like she's a machine driven by pain and it's driving all of us. It was a kind of humorous example in a kind of strange way and the guy I said this to busted out laughing and then apologized for laughing at the situation. But sometimes laughing is about all you can do to cope with a problem and get some temporary respite from the stress.

In any event the analogies could continue. I remember watching a show called Battlestar Gallactica which was the new series and they had an early show where the cylons were attacking the fleet every 33 minutes. And the fleet had to respond and hyper jump away to a different location every 33 minutes as the cylon machines kept pursuing them. It was a kind of science fiction story of battle fatigue. What I found ironic at that time was my mother was on half doses of pills and taking them every three hours. And we were in this cycle of dealing with her pain every three hours and responding with a bunch of care and "meals" and snacks that she wanted every three hours day and night, 24 hours a day. This happened for years. And I'm watching this show and watching my dad and I struggle with this crazy request schedule for years and years. And wondering how tough that battle scenario was in this fictitious show when we were undergoing a virtual shell shock of requests for years and years. The reality of the crisis in our day to day life seemed worse than the Battlestar Gallactica episode.

Requests were landing like bombshells in Flanders field in ww1 or something. They were seemingly unending day and night. And of course if your stuck in a chair and can't really get out of it and do much, you have to have everything brought to you. So it becomes of course a real challenge for the person who is sick. And it could likely drive most normal people crazy.

So that's the nature of the ongoing problem at home. And all those years of work have taken a toll on my fathers health. And now he needs more care as well. So now at times I'm trying to help both of them. Instead of two nurses helping my mom, it's one nurse helping two people. It was really difficult and like this for a couple of weeks, but some medications helped my dad get back to somewhat more normal life. Yet he is still having problems and his latest problems have been reoccurring and relapsing.

Needless to say, I don't have time to edit video right now or do astronomy or even spend much time trying to figure out how to dig us out of this hole that we find ourselves in. My sisters come up with quick solutions which are mostly based on moving the parents to assisted living or nursing homes. This of course will destroy any savings the parents have and they don't like the idea of doing that. Also we know the care she would need in a nursing home would not be adequate due to the nature of her ailment.

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