I really think I’ve gone stir crazy. No kidding. I have been out of work since early February, and have been taking care of my father ever since. He is not exactly housebound, but he is so freakin’ stubborn! He had a stroke on March 21 last year. He came home the first week of June last year after spending 11 days on a ventilator in the SICU at Albany Med, then 3 days in regular room. After that, he was at a rehab hospital for a month, then came back up to our hometown to a nursing home here for a month. Since then, he has been “recovering” at home. Recovering is his word… procrastinating is mine! He is so set in his routine that he won’t even try getting up from his lift-chair in any manner that isn’t exactly the same as he’s done since he’s gotten home. God forbid if his hemi-walker isn’t right next to him… never mind the fact he can’t stand up alone anyway. My brother, Jason, gets him in and out of the shower and helps wash him.
Here is how the last shower day played out…
Dad: It would be really nice if I had a pull-bar here. Points to the wall near the bathroom (hall too narrow to turn wheelchair around corner into bathroom. He has to transfer to there)
Jason: I’ll gladly buy you a pull-bar and install it if you can prove to me you’ll use it. I’m not going to waste money on something you won’t use.
D: I’ll use it.
J: Then use my arm as a pull bar. (He braced himself and braced his arm against the wall.)
D: No, not today.
J: If not today, Dad, then when? When anybody asks you to do something a little differently than usual, you always say “not today”.
D: Well, I don’t feel like it today.
J: C’mon, just do it. You know you can. I know you can. Susie knows you can… EVERYBODY knows you can. Do it.
D: No. Said in stubborn manner like a 5-year old
J: Well, if you would just do it, I’ll get the pull-bar and put it up.
D: I said I don’t want to.
J: No, you said you didn’t feel like it today.
D: Just get me in the shower.
J: Just grab my arm. You always lean down to get up. Try pulling up to get up.
D: It’s easier that way, the way I always do it.
J: How do you know its easier? You’ve never done it any different, so you can’t compare.
D: I don’t want to do it.
J: You could’ve already been in the shower by now if you would stop being stubborn.
D: Yeah, well you’re not helping. You won’t let me get up.
At this point, I looked at Jason and just rolled my eyes.
This went on and on for about 20 minutes. In the meantime, I’m just standing there waiting, holding the wheelchair so it doesn’t slide on the linoleum floor when he shifts to get up. (Did I mention his weight is up to 320 pounds? Total gain of 102 pounds in a year.) Finally, Dad gave in. Jason is more stubborn than Dad, and that saying “he didn’t pick it off a tree” is more apt than you realize! After Dad finally got up, Jason asked him, “Now, that wasn’t so bad, was it?” Dad, being Dad, said “Yes it was.” Sheesh!
So, you’re probably now wondering what this all has to do with me being stir-crazy. Well, like I mentioned, I’m taking care of him. All day. Every day. Every week. And now that Mom has a cast on her foot for her tendinitis and bone spurs, its getting worse. Mom gets tired out, trying to get around with that cast, so I still “work” after she gets home. At least until she has a chance to sit for a little bit and have dinner.
I really don’t have a problem with taking care of Dad. I just get frustrated. I get him into the bathroom every morning after mom is gone to work, then back out to the living room. Then I fix his coffee and breakfast. Then for the next few hours, I get up and down to get stuff for him. Can I have another cup of coffee, sit down. Oops, he forgot to mention he needs a box of tissues, sit down. His shoe is too tight please untie it, sit down. Get that neck pillow, sit down. Done with coffee can I have some water, sit down. Dropped the TV remote get it for him, sit down. Legs are chilly hand me that blanket, sit down. And now its lunch-time. Pattern repeats for a few more hours, but factor in cooking dinner too. Dinner time, mom gets home. And until about 7 or 7:30 pm, I’m still jumping up and sitting down… Then I go hide in my room where I can knit in peace!
I need to get out of the house now and then, but when? I need to find a job… I hate not having money, and its not fair to mom to be the only one working. When can I get out to job hunt? Seems like never. The longest I’ve been out of this house was to go to my nephew’s birthday party for 4 hours. And then my poor 16-yr old son was the puppet while I was gone. I didn’t have any money to give him as a thank-you… only a big hug and a big thank you. Poor kid was almost nuts when I got back! lol
Dad was just approved for getting a home health aide, and she’ll be here 3 days a week. While she’s here, I told her I’d probably take a walk. Maybe just go down the road and back… maybe go get an ice cream cone at Stewart’s. Or better yet, a root beer float! Mmmmm! Maybe I could just walk over to the park and sit for a bit. Or maybe simply go out the front door and sneak back in the back door and hide in my room where it’s quiet! lol
I don’t dare voice to Dad that I really need a break and really need to get out of the house, because I just know that he will say, “Well, get my scooter out and I’ll go with you.” Not the same. I don’t begrudge him wanting to get out now and then, but it seems its only when I want to get out alone for a bit… he never takes the initiative to want to get out unless someone else is going out. Suggest to him that we get the scooter and he can come out and guaranteed he won’t want to.
Sorry for rambling… I’m not even sure if any of this made sense! I just needed to get it off my chest. I think it may be a case of cabin fever… I get so I’m near tears at the end of the day sometimes. And those times are happening more and more.
Thanks for letting me rant and ramble. Sometimes a person just needs that sort of release now and then.
2 Comments
May 7, 2008 at 9:01:12 am
a) Did the stroke affect his personality or has he always been this stubborn? Can your mom get him to do things or is he resisting everyone? It can be pretty hard becoming disabled in one fell swoop and being stubborn is probably just his way of trying to have some semblance of control over his life when everything is managed by other people. It’s a tough situation for all of you
But he’s probably grieving his loss of health and just doesn’t know how to deal with it and being bossy/stubborn is the only way he knows how to feel like he can still make decisions. You might ask him what he is afraid of when he refuses to try new things or new ways. He’ll deny that he is afraid of anything but it will put the idea in his mind that maybe he’s just taking the safe way out because he IS afraid of something. He doesn’t sound like the type to admit it but maybe if he thinks he is being perceived as a coward it might spur him to action. It would have to be done *very* delicately though, schoolyard taunting might seem like a great outlet for frustration but will just trigger his stubbornness more, I think.
b) Does he have one of those grabber tools for when he drops something? Doesn’t help much with the fetching but it might mean he can get stuff himself if he drops it. (If he’s not too stubborn, that is!)
c) If suggesting he get his scooter out and go with you always leads to refusal then use that to your advantage and pester him to go out and then when we refuses go out without him. Maybe that will work
Alas, I don’t have many more suggestions as I’m the one needing the fetching rather than the other way around so I don’t have any tips.
I just try to keep as much stuff as I might possibly need all in my spot (my side of the bed, we don’t have a chair that is comfortable for me so I am in bed all the time even if sitting up, etc.) Snacks, water, craft stuff, books, magazines and my computer (which is also how I watch tv) are all within 2-3 feet so I don’t have to get out of bed for much during the day except treks to the bathroom (which I can do myself most days, mercifully).
May 7, 2008 at 11:01:06 am
Oh yes, he has always been this stubborn… but since his stroke, the stubbornness has taken a turn toward the “childish”. In other words, he argues like a child. We know this is the stroke and not truly him, but it gets frustrating sometimes.
He has a grabber stick, and the table next to his lift-chair has a lamp attached, and a magazine rack under it. He keeps his stuff there… like his back scratcher, paper towels, tissues, urinals, etc. On the table top is his water, small notepad, pens, cough drops or candies, and a phone. He sleeps in the chair, because he says the adjustable bed is too uncomfortable… I can’t blame him, the mattress is too thin, but no $$$ for a new one yet.
Before I read your comment, I told him he was going to get outside today. It’s supposed to be about 73 degrees F today. I already brought the scooter out of the bedroom and parked it next to him.
Our theory (my brothers, Mom and I) is that because he can’t be a husband the way he used to be, when he “orders” Mom around that in his mind he is saying “if she does these things and takes care of me, she still loves me”. Same goes for when he orders the rest of us around. That’s our theory anyway…
All he does all day is watch TV. I wish I could find a way to set up a knitting loom so he could use it. (He doesn’t have use of his left hand, arm or leg.) And me, I knit when I can, but do housework too, all in between the jumping up and down. But I think if I could get him to do something, anything, he might see that he is not useless. We don’t think he is, but he keeps saying he feels that way. He is still Dad to us. And he is still Grampa and Gamps to his grandchildren and great-grandson. That will never change!