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Monday, July 25, 2011

Feeling Rather Frustrated

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!


barbpolan said...

You already ARE a superhero!

How inspiring that you can be so patient with and attentive to Bob when you're very frustrated and he's grumpy. I'm going to try that with my husband when I'm frustrated with and he's grumpy about my situation.

oc1dean said...

Diane, since your PT is out-to-lunch you could look over some of these exercises to see if Bob could do them. Sounds like Bob needs some tough love communication,

Jenn said...

The therapists giving up probably has more to do with red tape and politics/money than it it has to do with Bob's "hitting the wall".
Would it be acceptable for Bob to be in diapers overnight (i don't know if he currently is, sorry) so you can get some sleep? I'm wondering if the "feeling" to pee is partially in the mind,too. I'm sure there's lots of anxiey to perform even the simplest tasks, hence the level of frustration. It ain't easy, even for soul mates, to be glued to each other every hour of every day.
The unconditional love you have given and continue to give is amazing.
I am looking forward to seeing you.

Linda said...

Diane you are indeed a remarkable woman and Bob is very lucky to have your support.

Please take good care of yourself, both physically and emotionally the best you can.

I hate to admit it, but all my falling caused my husband to do a lot of catching. A year after I got sick my husband had to have hernia repair surgery as a direct result of caring for me. If we didn't have my daughters to help I am not sure how we would have managed.

Lots of Hugs.

Nikki said...

Yeah, it's like when people say that going through suffering makes you a better person. When people said that to me when I was going through hard times, I was like, "At this rate I should be a saint then!"