Dad was asleep when we arrived tonight. It was good to see him sleeping soundly, but also made me more aware of how vulnerable he looks. I hate to think about how much weight he must have lost. And it isn't like he had a lot to work with beforehand.
If you didn't know my father as a youngster, you might be surprised to know that he was once overweight. Like everything else in his life, when he made the decision to lose weight, he simply did. Nothing fancy, no miracle diets, just the internal will and determination to change who he was. To become what he wanted.
I was anxious to visit with him after the last visit. I'd heard of a good visit yesterday, and selfishly wanted to experience some of that myself. But I didn't want to wake him up just to suit my selfishness.
He woke up anyway, and through a drowsy gaze greeted us appropriately. We helped him become comfortable through adjustments in bed, shifting around the covers, and providing him with this crazy sponge thing that functions as a makeshift toothbrush/tongue scraper.
Eventually, he took my arm and began to try and communicate. He was desperate that I understand his wishes. It took some time, and a little help from my brother to fully comprehend.
He wants to go home.
...
Officially, there are 5 stages of grief as it relates to a significant loss in your life:
Denial and Isolation
Anger
Bargaining
Depression
Acceptance
...
I'm no expert on anything emotional. The running joke around my house is "my husband with the cold dead black heart." So, I'm obviously at a loss to fully explain Dad's feelings or where he's at emotionally. It's clear that Dad is working through his loss at this time.
There is a paper on the wall that talks about patients with aphasia and how to interact with them. I don't remember everything on the list, but it all seemed fairly common sense:
Talk directly to them.
Loss of speech isn't a loss of intelligence.
Loss of speech isn't always an inability to understand.
Ask them questions that can be answered with a "yes" or "no."
I think I've heard the term before, but tonight was the first time I've seen "aphasia" applied to Dad.
Aphasia: loss of the ability to produce and/or comprehend language, due to injury to brain areas specialized for these functions, such as Broca's area, which governs language production, or Wernicke's area, which governs the interpretation of language.
I listened intently to everything that Dad had to say. I was honest about the need to stay at the center, and our inability to care for him at home at this time. I promised to talk with my mother and siblings about his care. I acknowledged that ultimately the decisions about his care were up to him.
I think what I witnessed tonight was Dad going through the stages of grief. I hope that what I witnessed tonight was Dad's unwillingness to accept his current situation, and the beginnings of him fully committing himself to rehabilitation.
Thursday, March 19, 2009
Tuesday, March 17, 2009
Adding insult to injury
When we arrived to see Dad tonight he was extremely animated. I had heard good things about physical therapy and his reaction to my sister last night, so I was excited to see so his enthusiasm at my arrival. It appears, however, that I'm not a very perceptive person. What I perceived at enthusiasm at my appearance was actually a heightened sense of agitation.
It took a little while to figure out what was on his mind. He was making gestures in the direction of the sink, and I was only able to make out a few words from time to time. But he was clearly angry. I understood enough to discover that one of the staff from the center had upset him. I called in the nurse to discuss who had been in the room but this only seemed to make things worse. I requested a full list of who had been in to see Dad, and she could only plead ignorance with no real answer as to whom had been in to see him.
At this point, I bumped up the ladder a bit and asked for the charge nurse. I took her up on the suggestion to go to the desk, at which point I was face to face with the lady running the floor for the night. She had taken care of Dad previously, and followed me back to his room along with his nurse for the evening. And, this is when it became apparent that it was his nurse that had angered him.
Awkward.
She was obviously more stunned than the rest of us as he gestured angrily in her direction. I asked her to leave the room while we continued to discuss the situation with the charge nurse and Dad. I asked him if she had been physically abusive and he thankfully replied "no." I asked if she had been disrespectful or rude and he replied emphatically "yes."
At this point, I'll admit that it doesn't really surprise me. She has been his nurse for several days of his stay at the center and I've never been terribly impressed with her apparent lack of empathy with her patients or their families. This is the same nurse that was somewhat unmoved as Dad fought that horrible headache this past weekend. She was busily chatting away on a cell phone when I interrupted her to ask if it were time for more medication, or if we should be concerned. The same nurse that referred to hospital policy as a reason for not allowing a TV closer to his bed. Close enough that he could actually see it.
So in hindsight, I probably should have seen this coming. I'm just such a blasted pessimist all the time, assuming the worst in people, that I try not to go down that road. I'm trying to be a 'kinder, gentler' me as I race through my 40's.
Back to Dad.
The charge nurse put me on the phone with her supervisor. He apologized for not being at the center, and then went on to apologize more profusely for the poor care that Dad was receiving. He's going to look into things tomorrow and provide me with more information. If nothing else, I would imagine that everyone was put on notice as it relates to Dad. Hopefully, he'll get the care he deserves, and expects until which time that he leaves the center and we enter into the next stage of his recovery.
Speaking of which, I'm told that he stood up yesterday. Not having seen it, I am instantly filled with images of him before the stroke. Tall and proud, sure of step, full of confidence. I'm sure that it wasn't quite like that, but it's a good sign. So, I'll take it for now, along with his determination to be treated with the dignity and respect that he deserves.
It took a little while to figure out what was on his mind. He was making gestures in the direction of the sink, and I was only able to make out a few words from time to time. But he was clearly angry. I understood enough to discover that one of the staff from the center had upset him. I called in the nurse to discuss who had been in the room but this only seemed to make things worse. I requested a full list of who had been in to see Dad, and she could only plead ignorance with no real answer as to whom had been in to see him.
At this point, I bumped up the ladder a bit and asked for the charge nurse. I took her up on the suggestion to go to the desk, at which point I was face to face with the lady running the floor for the night. She had taken care of Dad previously, and followed me back to his room along with his nurse for the evening. And, this is when it became apparent that it was his nurse that had angered him.
Awkward.
She was obviously more stunned than the rest of us as he gestured angrily in her direction. I asked her to leave the room while we continued to discuss the situation with the charge nurse and Dad. I asked him if she had been physically abusive and he thankfully replied "no." I asked if she had been disrespectful or rude and he replied emphatically "yes."
At this point, I'll admit that it doesn't really surprise me. She has been his nurse for several days of his stay at the center and I've never been terribly impressed with her apparent lack of empathy with her patients or their families. This is the same nurse that was somewhat unmoved as Dad fought that horrible headache this past weekend. She was busily chatting away on a cell phone when I interrupted her to ask if it were time for more medication, or if we should be concerned. The same nurse that referred to hospital policy as a reason for not allowing a TV closer to his bed. Close enough that he could actually see it.
So in hindsight, I probably should have seen this coming. I'm just such a blasted pessimist all the time, assuming the worst in people, that I try not to go down that road. I'm trying to be a 'kinder, gentler' me as I race through my 40's.
Back to Dad.
The charge nurse put me on the phone with her supervisor. He apologized for not being at the center, and then went on to apologize more profusely for the poor care that Dad was receiving. He's going to look into things tomorrow and provide me with more information. If nothing else, I would imagine that everyone was put on notice as it relates to Dad. Hopefully, he'll get the care he deserves, and expects until which time that he leaves the center and we enter into the next stage of his recovery.
Speaking of which, I'm told that he stood up yesterday. Not having seen it, I am instantly filled with images of him before the stroke. Tall and proud, sure of step, full of confidence. I'm sure that it wasn't quite like that, but it's a good sign. So, I'll take it for now, along with his determination to be treated with the dignity and respect that he deserves.
Sunday, March 15, 2009
Repeating duplicated repetition
Each of my recent visits has left me with similar feelings to the last. Don't be surprised if this entry provides no new substantive information. That is, unless it leaves you feeling as confused as we are at this time.
Dad is still far from accepting his current stage of recovery. He still expresses sadness, anger and frustration at not being able to do the things he could just 3 weeks ago. However I can also see some sense of surrender to work within his current confines. I'm sure his outlook varies from hour to hour, visit to visit. Anyone going through this will calmly reassure you that all of this is normal, and part of the healing process.
The weekend started with a call from Mom, seeking some sort of help in convincing Dad to eat. He wouldn't talk with me over the phone, but later gave in and ate dinner. Whether it was a visit from my sister, or just more prodding from Mom, I don't really know. He was sad. Sad, and facing something we hadn't really thought of; the fact that his stomach has shrunk after 2 weeks of basic starvation. His appetite is significantly lessened, and added to that is the confusion of his constant state of napping interspersed through the day. He has admitted on several occasions that everything is blurring together making it difficult to distinguish one day from the next.
I offered to work with the staff and see if we couldn't bring up a larger television, or at least locate it closer to his bed. His vision doesn't allow him to see the small screen located on the wall opposite of his bed. I also suggested bringing up a white board in an effort for him to write something he was unable to speak aloud. He was enthusiastic at both suggestions. When I approached his nurse with the ideas, she agreed to the board, but declined on the television. I won't violate any rules of the facility, but my efforts on that area aren't over yet.
On the way to our Sunday visit, my daughter and I picked up a small white board and dry erase markers. She was very enthusiastic, as was I. We were disappointed to see Dad grimacing in pain when we arrived. We set the presents down so that we could get a better understanding of what was happening. I know that he has recently began to experience headaches. Being aware of what put him in this situation, the pain only increases his anxiety that perhaps something else is happening inside his head.
The staff explained that this wasn't unusual with head trauma cases. That the pain can vary in intensity all the way up to "severe migraine." That would certainly explain why he was on the verge of tears, and writhing in the bed. Over the course of our visit, the pain medication eased his headache for a while, only to return later. The standing orders are to send him to catscan Monday, should the pain persist through the evening. Not completely satisfied with that answer, we pursued hospital staff until we came across a kind occupational therapist willing to explore in more detail. After a quick check of his blood pressure, she assured us that were something more serious than a headache going on, we would know simply from a significant increase in the reading. Fortunately, his blood pressure was low. Unfortunately, he was still struggling to cope with the pain.
Not long after another dose of medication, dinner arrived. He initially refused, but the "frequent headache sufferers" in the family convinced him of the healing powers of a little food. He agreed, and I got to see his typical meal for the first time. Honestly, I was surprised at what I saw. It looked significantly like any other hospital meal you've ever seen. From previous entries, you may remember that everything he eats is the consistency of mashed potatoes. That's what was so confusing to me at first.
The meat 'thing' was in the shape of a salisbury steak. Now, I'm no big fan of salisbury steak, per se. But it did smell surprisingly good. The corn wasn't in the shape of corn exactly, but it was close enough to know what it was. Nothing significant about the mashed potatoes. The applesauce/apple puree was in a separate bowl, looking no different than you'd expect.
Mom fed him, but he turned up his nose at a couple of the offerings. At some point early in the meal, while she gently chided him to eat it anyway, I did ask if she'd tried it herself. This got a few chuckles from around the room and one of those "if looks could kill" from Mom. It wasn't long after, that I hopped up to the plate and tried a little bit of everything myself. I'll admit that I was a little apprehensive, but everything tasted no different than what you'd expect. The salisbury steak thing tasted like salisbury steak, the potatoes were potatoes and the corn was corn. Sort of. The corn was the worst insofar as it was dry and a little light on the flavor end of the spectrum. So, I don't blame him so much for not wanting more corn.
Finally, the whiteboard. This is becoming a point of contention among the family. While I personally take the stance that it won't hurt him to try and write some things down with his left hand, I've been told that if he can't form the word vocally, he won't be able to write it down either. I wasn't in the room when he actually tried, but I'm told by my daughter that he initially struggled to write much of anything meaningful. I pointed out to her how difficult it would be to write with your left hand (when you've been right-handed all your life) and she quickly pulled a pen and paper from her bag and proceeded to very quickly scribble out Dad. And this from somebody on my side. Anyway, we'll see how things go with the white board, I haven't given up, and as long as Dad is interested, will continue to encourage him to try.
So there it is for this weekend, and most likely for the future. Repeating efforts to sit up, to eat, to talk, and to write. Repeating efforts to communicate with his friends and family. Repeating efforts to live like a human being and the dignified man that we all know.
Dad is still far from accepting his current stage of recovery. He still expresses sadness, anger and frustration at not being able to do the things he could just 3 weeks ago. However I can also see some sense of surrender to work within his current confines. I'm sure his outlook varies from hour to hour, visit to visit. Anyone going through this will calmly reassure you that all of this is normal, and part of the healing process.
The weekend started with a call from Mom, seeking some sort of help in convincing Dad to eat. He wouldn't talk with me over the phone, but later gave in and ate dinner. Whether it was a visit from my sister, or just more prodding from Mom, I don't really know. He was sad. Sad, and facing something we hadn't really thought of; the fact that his stomach has shrunk after 2 weeks of basic starvation. His appetite is significantly lessened, and added to that is the confusion of his constant state of napping interspersed through the day. He has admitted on several occasions that everything is blurring together making it difficult to distinguish one day from the next.
I offered to work with the staff and see if we couldn't bring up a larger television, or at least locate it closer to his bed. His vision doesn't allow him to see the small screen located on the wall opposite of his bed. I also suggested bringing up a white board in an effort for him to write something he was unable to speak aloud. He was enthusiastic at both suggestions. When I approached his nurse with the ideas, she agreed to the board, but declined on the television. I won't violate any rules of the facility, but my efforts on that area aren't over yet.
On the way to our Sunday visit, my daughter and I picked up a small white board and dry erase markers. She was very enthusiastic, as was I. We were disappointed to see Dad grimacing in pain when we arrived. We set the presents down so that we could get a better understanding of what was happening. I know that he has recently began to experience headaches. Being aware of what put him in this situation, the pain only increases his anxiety that perhaps something else is happening inside his head.
The staff explained that this wasn't unusual with head trauma cases. That the pain can vary in intensity all the way up to "severe migraine." That would certainly explain why he was on the verge of tears, and writhing in the bed. Over the course of our visit, the pain medication eased his headache for a while, only to return later. The standing orders are to send him to catscan Monday, should the pain persist through the evening. Not completely satisfied with that answer, we pursued hospital staff until we came across a kind occupational therapist willing to explore in more detail. After a quick check of his blood pressure, she assured us that were something more serious than a headache going on, we would know simply from a significant increase in the reading. Fortunately, his blood pressure was low. Unfortunately, he was still struggling to cope with the pain.
Not long after another dose of medication, dinner arrived. He initially refused, but the "frequent headache sufferers" in the family convinced him of the healing powers of a little food. He agreed, and I got to see his typical meal for the first time. Honestly, I was surprised at what I saw. It looked significantly like any other hospital meal you've ever seen. From previous entries, you may remember that everything he eats is the consistency of mashed potatoes. That's what was so confusing to me at first.
The meat 'thing' was in the shape of a salisbury steak. Now, I'm no big fan of salisbury steak, per se. But it did smell surprisingly good. The corn wasn't in the shape of corn exactly, but it was close enough to know what it was. Nothing significant about the mashed potatoes. The applesauce/apple puree was in a separate bowl, looking no different than you'd expect.
Mom fed him, but he turned up his nose at a couple of the offerings. At some point early in the meal, while she gently chided him to eat it anyway, I did ask if she'd tried it herself. This got a few chuckles from around the room and one of those "if looks could kill" from Mom. It wasn't long after, that I hopped up to the plate and tried a little bit of everything myself. I'll admit that I was a little apprehensive, but everything tasted no different than what you'd expect. The salisbury steak thing tasted like salisbury steak, the potatoes were potatoes and the corn was corn. Sort of. The corn was the worst insofar as it was dry and a little light on the flavor end of the spectrum. So, I don't blame him so much for not wanting more corn.
Finally, the whiteboard. This is becoming a point of contention among the family. While I personally take the stance that it won't hurt him to try and write some things down with his left hand, I've been told that if he can't form the word vocally, he won't be able to write it down either. I wasn't in the room when he actually tried, but I'm told by my daughter that he initially struggled to write much of anything meaningful. I pointed out to her how difficult it would be to write with your left hand (when you've been right-handed all your life) and she quickly pulled a pen and paper from her bag and proceeded to very quickly scribble out Dad. And this from somebody on my side. Anyway, we'll see how things go with the white board, I haven't given up, and as long as Dad is interested, will continue to encourage him to try.
So there it is for this weekend, and most likely for the future. Repeating efforts to sit up, to eat, to talk, and to write. Repeating efforts to communicate with his friends and family. Repeating efforts to live like a human being and the dignified man that we all know.
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