By far, one of the greatest frustrations I have as a caregiver is that I have no control over what I want to do and when I want to do it. I am sitting here so frustrated now that I can hardly think straight.
Today is July 4, my day off. However, I actually planned to work today to catch up on some projects that I really need to do. I had my plans all straight, but here it is 4 p.m., and I have not done anything I planned to do. I could cry.
I took some “me” time last night from midnight to 2 a.m. to watch a movie I rented from Blockbuster (been trying for a week to even be able to put it in the DVD player). BIG MISTAKE. It never pays to take “me” time. I always regret it later. So anyway, I took the time to watch a movie; afterward, I woke Lynn for his dinner (yeah, I know we have weird schedules), fed him, did his night routine, and then mine, so I got to bed at 3:30 a.m. Up again at 5, 7, and 9 (Lynn thinking it was 10. He seems to think he’s my personal alarm clock, and heaven forbid I just be allowed to sleep till I wake up on a day off!) to cath him. I go back to bed till 10, so I get 5 3/4 hours of sleep (15 min per cath event). Getting up at 10 makes me late getting started, but I figure we have nothing special we have to do today, so I’ll easily get started by 1 with what I need to do.
Then the day precedes to be shot to h___. I do the morning prep work while he does his vocal exercises. I take him to the bathroom and it doesn’t go as expected. He has to use suppositories due to limited muscle strength, and it didn’t “come back” as it should. That means disaster. Now we’re waiting in the bathroom, and he decides he needs to pee (why couldn’t he have gone before we go the bathroom–yeah, that doesn’t make sense to you unless you know that the cath supplies are in the bedroom, not the bathroom). I finish that, get him cleaned up, and then he announces he wants to sit in his manual wheelchair (he’s trying to toughen up his butt in hopes he can tolerate the cushion in that chair and maybe go to church again day). That means rearranging various equipment to get the manual chair out of that room and putting him on it instead of the power chair. That done, we go to the kitchen for his morning pills.
In the kitchen, he takes his meds and decides he wants me to put weights on his wrist to work his arms. That done, I turn to begin preparing my meal. No wait. He needs me to help him with his arm exercises. I do that, then take off the weights and get ready to take him back to his room. No, wait.” I want to do pull-downs in the weight room,” he announces.
I again go to the weight room (which I had just rearranged to get the manual wheelchair out), rearrange it again to get it ready for him, and back I go to the kitchen to get him. I roll him to the weight room, help him do the pull-down work, and then take him to the bedroom to set up the massager for his feet. I then start breakfast (two hours after I get up) and eat. While eating, I prepare mushrooms for roasting, cook spinach for his diet; I also make his soup for lunch. As I finish, I hear, “Sweetie, come back. I need to go to the bathroom again.” Large GROAN.
With a sagging heart, I go and take him back to the bathroom (remember, I only do manual lifts, so I’m physically lifting him in and out of these wheelchairs and onto the toilet). He “goes” and then says he might lie down awhile, so I roll him to his bed. “Oh, yeah, I want to do push-ups.” Seriously???
I get out the PVC work-out pipes that I insert under his mattress (out of the weight room) and help him do push-ups. Then I settle him down for a nap (put his pants on him again, cath him, put his boots on him so his feet don’t cramp, get the TV set for viewing, wash his face, and straighten up the room.)
While he’s down for a nap, I am just finishing cooking what I put on while eating, washing the dishes, and doing a load of laundry when I hear, “I’m ready to get up.” I get him re-dressed, hook him up to his peddler, and hear, “I’m hungry,” so I feed him breakfast. As I finish feeding him, I hear, “I need to go back to the bathroom again.” Major sigh.
I went back to the bathroom, back to bed, redressed, got him back up, reconnected him to his peddler, made him tea, cath again, and made a few adjustments, and now it’s 4 p.m. Six hours after I got up, I was finally finished with his morning activities, and I was ready to “start” my day.
I give up! I think I’ll take the “off.” After all, it will be time to cath him again in thirty minutes (true enough, he called to be cathed again at precisely 4:36), and he’ll want a snack 30 minutes after that, and then more tea, followed by another cath.
So much for my plans.
I know none of the above was unnecessary for his comfort and well-being. I know he hates that he had to disrupt my day so much (and I’m sure he hated hearing me complain about it even more). But that doesn’t change the fact that having so little control over my plans is depressing. I’m tired of being unable to plan anything and of disappointments, but most of all, I’m tired of the fact that I haven’t found a way to not let it get to me.
I wish it didn’t. I wish I could laugh it off and roll with the punches, but that “funny bone” just ain’t working right now. Could be a lack of sleep; could be the fact my arthritis is bugging me, or it could be…I’m just feeling sorry for myself and making it all about me. It’s not all about me, and it’s not all about him. It’s all about us. We’re in this together and I need to keep my perspective on it. In the scheme of my life right now, not being able to work on writing policies for my job is not a big deal. Making him comfortable and taking care of his needs IS a big deal. I have to refocus and get my perspectives right.
Hmmm….I think I might have the thing to do that…I think I’ll make a slushy out of watermelon….yeah, that will make it all better.
Happy 4th of July.
