Well, that's the understatement of this blog. I'm actually very frustrated. Cracking up, if you will.
It's been a tough weekend and a rough week or so, trying to get our house in order for Bob's therapies. First, putting the rail up and that entailed moving furniture around--by myself. No small feat. But I did it.
The problem was that when Bob came home from the hospital, I had to find room for his hospital bed, so I decided to put that in the parlor/living room because it's the largest room and also the room with the window air conditioner and fireplace, so it's the coolest room in the summer and warmest in the winter (we heat with wood). In order to do this, I had to stash away all the living room furniture, much of which ended up in the back bedroom which is now a storage room, but other pieces ended up in the hallway or my home office blocking one door that leads (guess where?) into the hallway. In order to get Bob's wheelchair in the hallway to use the rail, I had to re-open that doorway, plus move the parlor table out of the hallway where I had been using it to store supplies such as diapers, pads, etc. and I had to move a pallet of jevity out of the hallway, to boot, then move a night stand to make way for the table. Supplies and jevity went into the breakfast room, which involved moving more stuff out of the way to make room in there. The breakfast room is now a vast medical supply room. I moved the pigeon hole desk away from the office doorway, but had to move a bookcase to make room for the desk. The bookcase: I slipped into the living room, because it's thinner than the desk and I found room for it. It was a lot of work.
Then, I went to WalMart and got some therapy supplies: dry erase boards to practice writing, markers, and index cards to make my own flash cards. Bob still cannot identify objects and flash cards seem to be the only therapy for that particular problem. Then, I got a box and filled it with objects (such as a screwdriver and various small tools, a pen, a paperclip, a flashlight, spoon, fork, knife, a rock and a sea shell, etc.) and made flash cards with the words printed on them, so that I can take out the objects and cards and have Bob try to match them up.
And I've been going through the worksheets and discharge information from OT and ST (didn't get any from PT) and am trying to sort out the things we can do here at home. My thoughts were to develop a schedule where we could do each therapy for about 45 minutes per day and in that way we'd be replicating what he was getting at Outpatient Rehab here at home.
I was feeling pretty good about my accomplishments until this weekend and now the problem is Bob-- he's been cranky and uncooperative, not wanting to participate. And I don't know how to get him motivated. I think the whole idea of being "discharged" from therapy has finally hit him. His mood has just been fowl, not depressed, but rather angry and nasty. All he wants to do is lie in bed with the urinal between his legs. He says he has "to pee" but yesterday, he laid there for four hours straight in that position and I really don't think this is a medical problem, but a mental one. Of course, I don't know for sure. That's the frustrating part, the not knowing what is going on his mind. Because he can't tell me.
Last night, up again two times changing the sheets. Three days running now, I've gotten very little sleep. The last time he woke me up, I actually put the pillow over my head, hoping he'd just quiet down and I could get some sleep. But--no. He kept calling for me. Calling and calling then finally screaming for me, so I had to drag myself out of bed. Again. I am exhausted.
I am beginning to feel that I've made a big mistake, bringing him home. A big mistake. There's a little bird on my shoulder -- a female therapist bird, if you will -- who keeps whispering things like "he's hit the wall" and "he's not going to get any better than this." And another bird who looks like a doctor saying "put him in a nursing home, you can't handle this." And I wonder, who am I to think I can help him when all the professionals have given up? And somedays, I feel as if I am failing miserably.
I must say this: thank god for this blog. Some days, it keeps me going. And thank god for the good people I have met here, the ones who keep reading and keep me going. Especially Barb, Dean and Linda (all fellow stroke survivors) whose comments have given me such hope and just to know that there is hope for recovery after one year, after two years, even longer, means so much to me. Also thank you to Hasna, who left such a sweet comment from a "far far away country" and is also a caregiver to her husband who suffered a similar stroke. It's good to know I'm not alone. And everyone else who has commented here: Jenn, my niece Nikki, Sal, Helen and all the others. I really appreciate those words of support.
It's early morning and I just came home from walking Boomer and now I need to get Bob's pump disconnected and his medications prepared. And I hope today he'll be in a better mood.....
Who was it who said "what doesn't kill you, makes you stronger"? At this rate, I'll soon be a super hero!