Well, I ordered a new urinal, a French urinal, which is supposed to be "spill proof". And the minute it arrived, I was elated: this was thing that would save the day! Yes! Alas...... it's not working.
Aargh.
Some days I don't know whether to pull my hair out or bawl my eyes out. Sometimes, I do both.
I don't know if he's missing the hole or--what? I talked with one of his Occupational Therapists and she had no advice to offer except to "monitor" him more closely. OK, but it happens like 2:00 in the morning... She also suggested a catheter, but I feel that would be going in the complete wrong direction. I mean, all this stroke rehab is about "rewiring" the brain, and if he has a catheter, he no longer has to try to control it himself, and his brain won't "rewire" on this issue. She actually agreed with me.
I have tried to talk to Bob about this, but it's very difficult (with his aphasia) to know exactly how much he understands. I mean, I have heard him answer "yes" to questions and know that he absolutely does not mean "yes". (An example, a song by the Bee Gees was playing on the intercom, and one of the therapists asked Bob if he liked that song, and Bob said "yes". Well, I happen to know that Bob hates that particular song, at least he used too.) So... I try to discuss this problem with him and I ask him to tell me what is happening. Bob tells me "the bottle" is "tippings". He tells me, "happens". He says, "I trying". He promises to try harder. Right now, he is sleeping with his hand on the urinal, ready for action if need be. I know, he is trying and this situation is upsetting to the both of us.
Maybe a little more practice on his part?
I never thought that this would be so hard. I figured we'd conquer the urinal and then move on to the bedpan. (Don't even ask about the bedpan. He still has no control over that function, but at least that's not happening more than once a day.)
I am getting very little sleep, lately.
Thursday, March 31, 2011
Sunday, March 27, 2011
Sliding Backward
It's been a tough couple of weeks and sometimes it feels like we're sliding backward instead of progressing. I thought the worst was over, after that first month Bob was home, but now it feels like I've landed back in time.
I'm talking about the nitty-gritty stuff of life here, the unmentionable stuff: the process of elimination--to be polite, or "piss" to put it bluntly--- and that damnable urinal.
When Bob was hospitalized, the first thirty days after his stroke, he spent in ICU in critical condition and in a drug-induced coma because of severe brain swelling. He had a Foley catheter then. After he developed the second bout of near-fatal pneumonia, he was sent to yet another ICU at Kindred (a special pulmonary hospital) where he was put on a "vest airway system" which is a sort of inflatable vest that wraps around the patient's chest and literally shakes the secretions out of the lungs. He was on what they called a "Texas catheter" then, a sort of condom device attached to a tube. He spent four weeks at Kindred (a regular hell-hole of a hospital, in that all the patients were attached to some sort of life support machine and it felt like walking into a horror movie set). Finally, he was discharged to Acute Rehab, where he was first on the Texas catheter, then later in diapers. I had asked them, repeatedly, if it wasn't possible to teach him to use a urinal or bedpan, however this did not happen. So, he came home. In diapers. And I was determined from the start to teach him to use a urinal. I mean, changing diapers six to seven times a day is a pain, not to mention expensive.
The first couple of times it worked like a charm. Bob used the urinal. I dumped it. Piece of cake, right? Then we started running into problems: i.e. spillage. He seemed to be losing control of the urinal, especially at night, and the whole thing would get dumped: all over the bed, all over Bob. And I am up six or seven times every night, changing sheets, changing his clothes and that first month, my dryer broke (aargh) and I remember piling mounds of urine soaked sheets and clothes in the back yard because I wanted to keep some of the stink out of the house. Oh, those were the days.... and then one night, we had what I like to think of as the "urinal war". It was 3:00 in the morning, or some such god-forsaken hour, and I was changing out yet another set a sheets and I lost it. I told him: that was it, no more urinal. Just go in the diaper. That's what they're for, after all. He flipped. I mean, really flipped. I know that when someone has a left-brain stroke that his "logical" part of his brain has been compromised and the right side takes over, the child-like emotional side, and that night was the first time I really saw it come through. He threw a tantrum that would rival any two-year old. He began screaming, first "DIAPER! DIAPER!" then "BOTTLE!" then just "GA! GA! GA! GA!" I relented. And gave him the urinal back. But with warning: one more time, and it's gone. And wa la! It worked. No more spillage. Until now....
For some reason, we've slipped backward here. And once again, I am up every night changing out the urine soaked sheets, the clothes. At least my dryer works, but.... Now, it's me who wants to scream GA! GA! GA! and last night, I lost it again. I hate to admit it. I'm only human. But I took the damnable urinal away. He didn't throw a tantrum this time. But I could tell he was upset. And later, he more or less asked for it back. I gave it to him. With another warning. God, I do hope this works again.
I don't know why I'm writing this. It's not very pleasant or uplifting. It would be so much better to have something good to report. But, alas, I do not. I guess I'm just venting. Getting things off my chest. Letting you all know that life is not a bowl of cherries here. Sometimes it's just hard.
I'm talking about the nitty-gritty stuff of life here, the unmentionable stuff: the process of elimination--to be polite, or "piss" to put it bluntly--- and that damnable urinal.
When Bob was hospitalized, the first thirty days after his stroke, he spent in ICU in critical condition and in a drug-induced coma because of severe brain swelling. He had a Foley catheter then. After he developed the second bout of near-fatal pneumonia, he was sent to yet another ICU at Kindred (a special pulmonary hospital) where he was put on a "vest airway system" which is a sort of inflatable vest that wraps around the patient's chest and literally shakes the secretions out of the lungs. He was on what they called a "Texas catheter" then, a sort of condom device attached to a tube. He spent four weeks at Kindred (a regular hell-hole of a hospital, in that all the patients were attached to some sort of life support machine and it felt like walking into a horror movie set). Finally, he was discharged to Acute Rehab, where he was first on the Texas catheter, then later in diapers. I had asked them, repeatedly, if it wasn't possible to teach him to use a urinal or bedpan, however this did not happen. So, he came home. In diapers. And I was determined from the start to teach him to use a urinal. I mean, changing diapers six to seven times a day is a pain, not to mention expensive.
The first couple of times it worked like a charm. Bob used the urinal. I dumped it. Piece of cake, right? Then we started running into problems: i.e. spillage. He seemed to be losing control of the urinal, especially at night, and the whole thing would get dumped: all over the bed, all over Bob. And I am up six or seven times every night, changing sheets, changing his clothes and that first month, my dryer broke (aargh) and I remember piling mounds of urine soaked sheets and clothes in the back yard because I wanted to keep some of the stink out of the house. Oh, those were the days.... and then one night, we had what I like to think of as the "urinal war". It was 3:00 in the morning, or some such god-forsaken hour, and I was changing out yet another set a sheets and I lost it. I told him: that was it, no more urinal. Just go in the diaper. That's what they're for, after all. He flipped. I mean, really flipped. I know that when someone has a left-brain stroke that his "logical" part of his brain has been compromised and the right side takes over, the child-like emotional side, and that night was the first time I really saw it come through. He threw a tantrum that would rival any two-year old. He began screaming, first "DIAPER! DIAPER!" then "BOTTLE!" then just "GA! GA! GA! GA!" I relented. And gave him the urinal back. But with warning: one more time, and it's gone. And wa la! It worked. No more spillage. Until now....
For some reason, we've slipped backward here. And once again, I am up every night changing out the urine soaked sheets, the clothes. At least my dryer works, but.... Now, it's me who wants to scream GA! GA! GA! and last night, I lost it again. I hate to admit it. I'm only human. But I took the damnable urinal away. He didn't throw a tantrum this time. But I could tell he was upset. And later, he more or less asked for it back. I gave it to him. With another warning. God, I do hope this works again.
I don't know why I'm writing this. It's not very pleasant or uplifting. It would be so much better to have something good to report. But, alas, I do not. I guess I'm just venting. Getting things off my chest. Letting you all know that life is not a bowl of cherries here. Sometimes it's just hard.
Thursday, March 24, 2011
Thank Goodness for Good People
I spoke with my dad and mom last night (they call every day, and I truly appreciate their support) and my dad offered to send us the money to pay for a wheelchair transport to get Bob to and from Rehab. This is a life-saver (and back-saver for me, no more lifting that wheelchair, etc.), thanks Dad!!! The wheelchair transport is a sort of taxi for wheelchairs, i.e. a van with a wheelchair lift and it costs $3.50/each way, so $7.00/round trip times three times a week = $21.00 per week for us. Too much for us to pay, with everything else Bob needs (i.e. diapers, feed tube supplies, medical equipment rentals, prescriptions, doctors and therapy co-pays, etc.) So, to Mom and Dad, a big THANK YOU!!!!!
Another big Thank You to Cheri for sending the Dell laptop. As soon as I have time to figure it out, I'll transfer my files and it certainly is a blessing (not to mention peace of mind) to have a back-up for when this old Mac gives up the ghost! And I hope I can find some "brain games" to download for Bob and maybe he'll be able to use it for some therapy. So, THANK YOU, Cheri!!
It's good to have good people in your life.
Bad news about the hyperbaric therapy. We went yesterday to see the doctor in charge of HBOT and she said that Dr. Doom did not have "authority" to write a prescription for hyperbarics and is sending us to yet another doctor. Damn.
Another big Thank You to Cheri for sending the Dell laptop. As soon as I have time to figure it out, I'll transfer my files and it certainly is a blessing (not to mention peace of mind) to have a back-up for when this old Mac gives up the ghost! And I hope I can find some "brain games" to download for Bob and maybe he'll be able to use it for some therapy. So, THANK YOU, Cheri!!
It's good to have good people in your life.
Bad news about the hyperbaric therapy. We went yesterday to see the doctor in charge of HBOT and she said that Dr. Doom did not have "authority" to write a prescription for hyperbarics and is sending us to yet another doctor. Damn.
Tuesday, March 22, 2011
Caregiver Burnout
I do believe it's finally hit me. I am literally, completely, totally burned out. Bone tired. Exhausted. Don't know which way I'm going half the time. Crying at the drop of a hat. Bob started Outpatient Rehab, but too early for any results except that my back is killing me---man, that wheelchair is heavy... and we're scheduled to go three times a week, plus doctors appointments. I don't know how I'm going to keep this up not to mention how we're going to pay for it.
Saturday, March 19, 2011
Wednesday, March 16, 2011
Breaking News: His Right Arm Moves!!!!!
This morning, I was in the kitchen crushing up Bob's a.m. meds when I happened to look up through the pass-through window that looks from our kitchen into the dining room and living room (Bob's hospital bed is in the living room) and I see an amazing sight: Bob's right arm in the air! At first, I couldn't believe my eyes. I went to his bed, but his arm was still. Could I have imagined this? So, I went back to preparing his medication and while I was syringing the meds into his feeding tube, Bob yawned and his right arm sprung into the air!!!!
This may not seem like a lot, but there has been absolutely no movement in that arm since the stroke. And, although it was strictly an involuntary movement, it means his arm is no longer paralyzed. And it has certainly not "plateaued!" This is progress! This is the way he started moving his right leg: first with involuntary movements, later he began to gain control.
Whoo hoo!!!!!
I write this breathlessly, quickly because we have a big day ahead of us. Bob has his evaluation appointment at Outpatient Rehab and I need to get him ready for that. Happy tears, today!
This may not seem like a lot, but there has been absolutely no movement in that arm since the stroke. And, although it was strictly an involuntary movement, it means his arm is no longer paralyzed. And it has certainly not "plateaued!" This is progress! This is the way he started moving his right leg: first with involuntary movements, later he began to gain control.
Whoo hoo!!!!!
I write this breathlessly, quickly because we have a big day ahead of us. Bob has his evaluation appointment at Outpatient Rehab and I need to get him ready for that. Happy tears, today!
Subscribe to:
Posts (Atom)