Physical:
This was a particularly bad day. It started out with me trying to get DH up early (earlier than "usual"). First of all he decided he had to get up and sit on the commode. He sat there for 45 minutes, for basically nothing. It went downhill from there.
He just was in some kind of strange mind-set, and wouldn't cooperate. I tried to get him up and into the wheelchair, and he grabbed my arm and pushed against me. He fiddled around with the catheter and the elastic belt for holding it (which he never got done correctly anyway). He insisted on putting on his shoes himself. Just one little thing after another.
And, of course, I couldn't figure out how to work the portable oxygen. I did finally figure out how to turn in on, but since I can't read the guage, I couldn't adjust it. I'm pretty sure it was on way to high a liter flow.
Then I had a really hard time getting him in the car. It's not been that bad before. He just can't get it in his head to let go of something once he grabs hold (like the door for example). I was so exhausted by the time I got him in, and even though the whole process started more than 2 hours ahead, we were half an hour late getting to his appointment.
Then I couldn't get him out of the car. Part of that problem was their wheelchair - even with brakes on, it moved. He was sitting on the pavement beside the car and I had to go in and ask for help. The nurse came out, saw the situation, and went back for 2 more people to help!
We went through the same process getting him back in again. I tried to call DSS on the way home (after stops at pharmacy and grocery store), but couldn't get a call through. But, surprisingly enough, I managed to get him into the wheelchair on the first try.
I had stopped at the mailbox on the way in the driveway,. When I stopped, I went on and carried cold stuff in first. I went to get him, and he was folling around with the mail, and wouldn't put it down (it was all JUNK! Not even a magazine). He kept saying he could push the wheelchair in.
Once I finally got him in, he wanted to go right in and lay down. I made him a sandwich at least, he refused anything else.When I went in to start getting dialysis set up, I found the bed wet .. where he had spilled a bottle of water. So much for nice clean sheets. So I got him in the wheelchair long enough to watch his favorite show while I finished the set up and got the bed changed.
Not that it particularly pertains to his condition, but the cycler has a problem. I guess I'll need to call and have it replaced. The last time it woke me with alarming was around 2 AM. He was awake (but earlier when it alarmed he thought it was a movie and told me to just turn it off). He was breathing oddly, and when I asked why he said he was holding his breath. For no particular reason. I've noticed him doing that several times recently.
People:
The neighbor - and 3 kids - walked over just as we were getting in the car to leave. I *think* they thought they could "help". Of course they have no clue how to help; and I seriously doubt that very small woman (short but heavy) or those children would be able to do anything helpful anyway. I just found it very odd for them to have come over just then.
I spoke with the nurse of course. I updated them on his medicines. Apparently they aren't going to take him off any others. I was afraid they were going to try to put him ON something else - they keep harping on his low potassium. I don't think they really realize just how little appetite he really has!. She says she has been talking to the hospice nurse, and they're working towards a solution to having him have to go to the clinic so often.
Since I couldn't get hold of DSS, he never came over. He called later, but since I had gotten DH in, I told him not to worry about it. He had to go to the airport to meet his son. I said for them to come over Friday would be fine, and do the heparin then.
Emotion:
Off and on during the day I was border line hysterical. I get so angry, and there is nowhere to focus that anger. I *know* DH can't help most of what happens. He has dementia, and it expresses itself in curious ways. But it's getting harder to deal with. And the worse my eyes get, the more frustrating it becomes. Not to mention I'm just plain tired. I don't want "help". I've come to realize I'm too much of a perfectionist. No, that's not quite the right word. But I want thiings done MY way in my home. And I want things put up where and How I want them. And it drives me crazy when people insist on "helping" me and then do it *their* way. And I'm supposed to be SO grateful for their help that I don't say anything. And then I have to spend even more time and effort later getting things back. Plus, what people don't realize, the worse my vision gets the more important it is that everything be put where I keep it - otherwise I can't find things!
So, I'm even more exhausted trying to get the house clean before anyone comes over, as well as keeping up with taking care of DH.
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