Thursday, December 9, 2010

Today was going to be...

A great, uplifting, positive post.

Then I got out of bed. LOL!

The toilet (the only one Ron can get to) has been knocked off of it's ring by some old dude who can't seem to drive his wheelchair straight. Oh, that would be Ron. I know that he doesn't mean to run into things and that it's the tremors that sometimes hit the joystick at the wrong time. He even keeps the speed turned down pretty far so he'll have less chance of doing damage. But, I have doors without trim (now), a refrigerator with dents, cabinets missing chunks, etc. - all because of Parkinson's tremors. It's not like he can get up and walk so we do what we can.

This morning, he told me that the toilet was leaking out under the base. Oh yeah, that's how I wanted to start my morning. I don't have the money (really) to hire a plumber so I've been reduced to begging my poor son-in-law to help us out. He's got a fence he's trying to get put in at their house before it gets too cold to do it, but something about Ron not being able to get into a bathroom has him willing to put his needs on hold to take care of ours. What a blessing he is to our family! My brother who lives in Topeka is a plumber, but his wife told me that he's just too busy to come down and help. I would have paid him but it's not happening.

Keith says I've been angry this week. I think he's right. The PTO issue at work has more than one person (not counting me) upset. It's felt that the balance of "who" gets off at the holiday has been unfairly leveraged in one direction and others are being told to not count on the days off because there is work to be done. If there's work to be done, it really should be spread out among everyone and not look like one person doesn't have to participate. I'm trying to not let it bother me, especially since Christmas will be spent at home without family members but I'd still like to take the time off. We can't carry our unused time forward to the next year so it's either a "use it or lose it" situation for many. The sad part is if management won't let it be used.

I've been angry, too over Ron's situation. His left knee is beyond painful and he is having trouble even transferring. I tried to help in in the bed the other night and all I did was hurt my back. He is too heavy for me to manhandle around. He said he wants to have aggressive treatment done to his knee but I think that will just make things worse. Then, he said he'd just go ahead and have it amputated too. I said that would really make my life so much easier and guarantee that he'd never walk again. I said if he didn't figure out something that he was going to end up in a nursing home. He said, "Don't say stuff like that to me." I said that I wasn't trying to be mean about it, but I just couldn't do this much longer. He's getting weaker and less able to do things for himself and I'm not getting any younger. I have people my age retiring or planning their retirement. I'll be working until one of us is hauled away in a box.

He doesn't sleep well at night, so I don't either. Difference is, he can take a nap during the day if he's really tired or feeling bad. I don't think my management would think too highly of me taking a nap during the day. There are definitely days when I miss having a spare bed in a spare bedroom where I could retreat to if I needed to sleep. He can't get up in the night without a light. Just to go to the bathroom and get back to bed is at minimum 15 minutes and sometimes up to 30 minutes. Try that a couple of times a night and you're not very nice the next day.

Ron said I've acted like I think all of this is his fault. {sigh} I don't, but I do know that at least part of his physical problems are a direct result of what he did five, ten, and twenty years ago. All the years when I tried to help him with his diet and have him eat what was good for him. That would work for a while at home but then he'd order large pizzas at work, or eat 2-3 Butterfingers, or stop for food at McDonald's and then come home and eat a meal, too. The other day we came home and he'd eaten an entire container of Cool Whip - straight from the freezer. When I expressed my dismay, he said it wasn't full. It was only missing two tablespoons! He said, "Well, you didn't get me any cookies so I ate that." I didn't get him cookies because he opens the bag and eats the whole bag. They're $3.00 per bag. I don't spend $3.00 a day on me at work (I rarely have a week where I spend any money at all) so I didn't really feel like we could afford 4-5 bags of cookies that he'd have eaten in a week or less. Keith went to the store for me and he got him Quakers rice cakes in a variety of flavors. Ron's not interested in those.

So, tonight I get home from work to discover that he's had two cans of fruit - all day - and two bags of the rice cakes. I get so frustrated with what he doesn't do as much as with what he does do. I don't know how to fix the problems if I'm the only one putting out the effort. He's in bed now (8:14 PM) because he's tired. I still have trash to take out, a kitchen to clean up, and laundry that I should take care of.

But, instead I'm going to look at a sketch book and plan some cards and journals. This, too shall pass.

9 comments:

That corgi :) said...

hugs to you; it is such a hard road you are walking; I am sure it is so very difficult for you all; but I am glad that you chose tonight to do something for yourself with planning journals instead of doing things around the house; I am sure you needed that "me time"

betty

Sandra said...

Good attitude!
I do think that a meeting with management is in order: you need to insist on nap-time.

jojo said...

I could easily be your husband with all the health issues I have and I really appreciate your candor and honesty from the caregiver point of view. It's a hard road and you are a very strong woman to walk this with him. Please find some time for you...the trash can wait. take care...;j

Donna B said...

first, let me give you some (((big hugs))). You are one amazing woman and definitely qualify as a hero.

You are doing everything you can, but at some point, I think Ron will have to go to a nursing home. Not to be mean, but like I heard the other day, in an emergency on an airplane, put the oxygen on yourself FIRST before you can help anyone else...

Ron depends on you for everything and he seems to be fighting himself the majority of the time.

I cannot imagine being in your position. Everything is on your shoulders. You cannot risk hurting yourself when you are the bread winner.

I would start investigating nursing homes. Just in case. Finding a good one, with good food and care is not easy and the last thing you need is to HAVE to put him in one and not know a good one.

We did not want to put my Dad in a nursing home. It was against my Father's wishes (or anyone's for that matter) but he became incontinent of both bowel and bladder in addition to his paranoia and mood swings with his dementia. Mom was in her 80s and she just physically, emotionally, mentally, could not do it anymore.

I hope I have not spoken out of turn or stepped on any toes, but I care for you and know this is so difficult. You are an incredibly strong woman and God Bless your son in law for helping you!!!

I am keeping you in my prayers dear friend...more (((( hugs))))

Thisisme said...

Gosh Teresa, if ever I'm feeling a bit whingy about anything, I am just going to stop and think about you and the position that you are in. I just can't begin to imagine what you are going through, although I can certainly imagine how tough it must all be for you. Is there any possibility of any respite care at all, just so that you can draw breath, and have some ME time. That really is so important in your situation, which, really, is a 24 hour, seven days a week thing. As you say, the work situation certainly isn't helping you at the moment either. Wish there was something I could do, but I WILL keep you in my prayers. Sending you a big (((hug))) anyway.

Green Girl in Wisconsin said...

I'm sending you a HUGE cyber hug today. go easy on yourself. You need to take care of YOU, too. And I'm glad you have a SIL who helps with the plumbing.

Rae said...

Ron sounds like he drives a wheelchair like I do. I have really gouged up our doorways and walls.

Sending hugs your way and keeping you in my prayers.

Kristen said...

Sorry...... I really hope things get a litte brighter for you. One day at a time. One moment at a time. Got it?? HUGS!

caterpillar said...

It sure sounds you had a terrible day...*hugs*....All I can say is hang on...it'll surely get better