Sunday, February 28, 2010

Where shall I start???

This really isn't (much of) a bitching post. But, you can be the judge. All comments - negative or otherwise - are welcomed. "Otherwise" does not include nasty, though. OK?

I wonder if it just gets any better than this...

Ron had his visit with the neurologist on Wednesday and I was less than pleased with the results. He doesn't agree with the 1st neurologist's diagnosis of Parkinson's. He says that Ron doesn't have enough of the overall symptoms and that day his muscles were pretty loose. He said the postural tremors were more from a "dyskenesia" than from Parkinson's. He also was not sure about the dementia portion but I talked to him some at length about the confusion and comments that Ron makes. One of the symptoms of NPH is the inability to hold urine - you get the urge to go, and you go. Ron has had a few instances of that in the past few months but he also has an enlarged prostate so it could also be that. The one thing all doctors agree on is that Ron has so much wrong with him, that it's nearly impossible to determine exactly what disease process is causing what and what medication is causing or has caused the symptoms. Lovely... It's almost like they're saying we can give him a bandaid but we can't fix it.

Got the Aricept increased to 10 mg at night instead of 5 mg. Got the Clonazapam increased to three times a day. He goes back to see him again in three months unless he finds something on the CT scan they ran in the hospital that looks different from the one he ran in November.

Ron still has a lot of confusion and he gets really ticked - not really mad, but definitely irritated - when I call him on it. For instance, he used to see a nephrologist in her office but she had health problems and never did hospital rounds. When he was in the hospital, one of her partners came to see him. He's seen him several times in the past four years. Dr. Moussa came to see him last week as well and said that he wants to see Ron in the office in April (that's when we could get an appointment) or sooner if his blood work is not good (he goes Thursday for that). When I said something to Ron about Dr. Moussa he asked me if that was the neurologist we were seeing that morning (that was Dr. Genilo). I said no and clarified who he was. "Was he the neurologist I saw in the hospital?" was his next question. No, Dr. Abbas was who you saw in the hospital. "Then who is Dr. Moussa?" Your kidney doctor. "Oh, that's too many doctors for me to keep straight." Hmmm... good thing I can do it, eh?

Fast forward two days to Friday. I pulled into the driveway about 5:15 and could smell something burning. I was hoping that someone was cooking outside but I was really afraid that it was coming from my house. It was. I opened the door to the kitchen and could see a smokey haze throughout the house. I started opening sliders and turning on ceiling fans. I was terrible and I thought I was going to vomit. He said the smoke alarms went off for about 10 minutes.

When I asked him what caused the smoke, he said he hadn't eaten all day (his own fault) and decided to fix himself a frozen pizza (instead of the microwave items or the stuff he could have just eaten cold out of the fridge). His back hurt so bad standing and the pizza stone was too heavy for him, so he picked something else out to use. It was the lid to the broiler ban. Not a good substitute, especially when you're adding extra cheese.

I cleaned, and I cleaned. I think I cleaned for about two hours. I had to completely take the oven apart inside as far as I could so I could get the burnt on debris. I had to scrub and scrub the grates. The lid to the broiler will never be the same. I have to admit I was not very nice about having to do it. I wasn't nasty but I did say stuff like I thought we talked about what you could do and what you shouldn't, if you waited all day to eat why couldn't you wait 30-45 more minutes until I got home, why didn't you get something out that was easier, etc. I said that I was not really mad at him but very frustrated that he doesn't think about possible consequences of his actions. He's never been very good about the "what if" factor of a lot of things and he's much worse now. I said it really bothered me to have to come home from work and worry about what I'd find and have to take care of it all. I said it was a lot for me to have so much on my shoulders - I have the weight of it all - and that the least he could do would be to think of ways he could save me additional work.

Yesterday we were both sick enough (by the time I got home from work Friday, I was sick, too) that I called the doctor's office. Ron has near pneumonia and I have strep and sinus infection. Ron got an antibiotic and inhaler, and he got a breathing treatment with the order that an in-home one would be ordered for him. I got an antibiotic. I thought she was going to give me a strong decongestant, too but I think she forgot once she started looking at Ron. I told her some of his confusion problems (one of her employees, Laura - who does all of Ron's referrals to outside doctors and such - had walked by and said hello; once she passed, Ron asked me who she was. He should have known) and she was a bit surprised.

Last night I felt so bad that I got up and got dressed and took myself to Walgreen's. I wanted a vaporizer so I could put Vick's in it. I found one but I also found a little personal vaporizer thing that I ended up buying instead. It has become my new best friend. I plugged it in and took it to bed with me. I laid back on my three pillows (couldn't take it any lower than that because I couldn't breathe) and put it across my chest. I guess I could have had a consequence of that, but at that point I just wanted to sleep and I would have done just about anything to do so.

While I was obsessed with the hunt for the perfect way to go to sleep, Ron was in and out of sleep. I told him I was going to Walgreen's and I'd be back soon. Got home, he was awake. Fixed up the items I got and took them to the bedroom. We were watching Outdoor Space (or something like that) on TLC and Ron comes up with something along the lines of "See, I told you that something like that is what you need to build." I asked him what he was talking about and he said he must be dreaming. About 10 minutes later, something else was said on the TV about their plans and he again starts talking about how I needed to build something to put together an item to make it easier for me to breathe and using the hand-held steam vaporizer I had (that one uses hot tap water; not really something that works well). I - again - told him that he was not making any sense and was just pulling things in from outside areas (in this case, the TV) and sticking them into his conversations.

He thinks he's perfectly rational and I'm the problem.


Rae said...

I can't begin to imagine the stress that you are under. It sounds like things are overwhelming right now.

Have the doctor's considered that Ron's problems may be related to diabetic dementia? I have taken care of patients who have had diabetes long term and go on to develop dementia as a result. It is a difficult dealing with someone who doesn't recognize they have a problem like that. I know it is frustrating for you.

Please consider a caregiver support group if you haven't already. If you ever need a sounding board or someone to listen just email me. I can't offer much, but I am certainly willing to let you bounce your frustration off of me.

Kathy's Klothesline said...

I agree with Rae about a support group. Sometimes it is just a relief to be able to unload frustrations!

I am so sorry that you are facing this. I wish I could offer more than words .....

Teresa - in the Middle Side of Life said...

Thanks. I did find an online support group but they have so much worse situations that I feel selfish when I talk about my problems.

Tonight he took his medicines and then casually said that he had taken a pill from the envelope on the shelf: I flipped. Why would he take something off the shelf and take it. Said that he didn't want to bother me I am sick. I told him that I do everyrhing, why would he think I wouldn't take care of all of his meds...