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.
Thursday, March 12, 2009
Adversity
The focus of the next 3 weeks of rehabilitation, is simply to get Dad to the point where he can reliable move around in a wheelchair. Let that sink in for a minute. 4 weeks of rehabilitation to get into a wheelchair. Like most people I know, we hold out hope that Dad will beat the odds.
He ate breakfast and lunch but declined to eat dinner today. He got dinner anyway, via the PEG. I'm sure he was tired, but he's also at that point in recovery where he's full realizing what is ahead. His speech is coming along at a similar pace. He's getting better, but growing less patient with his inability to communicate effectively. It's clear that there are frustration and/or depression issues to be worked through. Certainly understandable.
I don't know if it was the right thing to do, but I was honest with Dad about that first day. After the girls left the room, I talked to him about "the decision." That is, when the surgeon presented us with the option of surgery, knowing that he'd have a tough road ahead, but it would be his best option at survival. It was a tough story to tell him, and we both struggled to get through it.
We finished on a positive note, lots of kisses from grandaughters, a handshake and a promise to return this weekend. Thanks to all of you that continue to reach out through blog comments, phone calls and other well wishes. The messages are being conveyed to Dad, and it always makes him smile.
He ate breakfast and lunch but declined to eat dinner today. He got dinner anyway, via the PEG. I'm sure he was tired, but he's also at that point in recovery where he's full realizing what is ahead. His speech is coming along at a similar pace. He's getting better, but growing less patient with his inability to communicate effectively. It's clear that there are frustration and/or depression issues to be worked through. Certainly understandable.
I don't know if it was the right thing to do, but I was honest with Dad about that first day. After the girls left the room, I talked to him about "the decision." That is, when the surgeon presented us with the option of surgery, knowing that he'd have a tough road ahead, but it would be his best option at survival. It was a tough story to tell him, and we both struggled to get through it.
We finished on a positive note, lots of kisses from grandaughters, a handshake and a promise to return this weekend. Thanks to all of you that continue to reach out through blog comments, phone calls and other well wishes. The messages are being conveyed to Dad, and it always makes him smile.
Tuesday, March 10, 2009
Swallow
As defined by Merriam-Webster:
transitive verb
1 to take through the mouth and esophagus into the stomach
2 to envelop or take in as if by swallowing: absorb - "swallow the financial loss" "watch night swallow the valley"
3 to accept without question, protest, or resentment "swallow an insult" "a hard story to swallow"
4 take back retract "had to swallow my words"
5 to keep from expressing or showing: repress - swallowed my anger
6 to utter (as words) indistinctly
intransitive verb
1 to receive something into the body through the mouth and esophagus
2 to perform the action characteristic of swallowing something especially under emotional stress
Dad has done a lot of swallowing lately. I don't know that any of it has been easy. But the swallowing I'm excited about is related to food. He actually had his first "meal" today. I don't remember exactly what the staff told me, except that it was all sliced, diced, minced or otherwise mashed into the consistency of baby food. I know that the biggest worry related to him swallowing has been aspiration and/or choking. Puree the food so that choking is less likely. And thicken liquids to reduce the aspiration risk. I didn't try it personally, but I'm told he drank something the consistency of honey. Hopefully it all tasted good, Mom did comment that it smelled delicious.
The girls and I spent some time with him last night. He was asleep when we entered, but it didn't take long for our ensemble to rouse him from his slumber. Not intentionally, I think we might just be inherently noisy.
He responded well to our visit, but was obviously tired. We updated him on the last few days of our lives, including a rather unfortunate 'D' in 6th grade Spanish. We talked on about the progress on our new house, paying particular attention to the coloring of the kitchen tile and granite. I don't know if he feigned interest for our benefit, but he did seem to enjoy the talk. His voice is still quiet, and I understand only a few words. But it's still good to hear his voice, and see him work through this stage of rehabilitation.
He was alert and responsive enough to answer a few questions for me. While I understand that he can't move his right side, I didn't understand if that included sensation. I've been worried that he could be in pain, and unable to remedy the situation. In response to my question about feeling in his right arm, he simply shook his head 'no'.
I've been worried about his vision as well. Knowing that he had limited vision in his left eye due to the macular degeneration, I was worried that the stroke might have affected his right eye. Again, he responsed to my question, but this time when asked if he could see out of his right eye, he shook his head 'yes'.
We finished our visit and said our goodbyes as the staff came in to finish off his feeding for the day. This time, no swallowing. We were told previously, that the path to eating would be like everything else at this time in his recovery; one step at a time, accepting improvements as they come and providing support and encouragement as he continues down the path of recovery.
transitive verb
1 to take through the mouth and esophagus into the stomach
2 to envelop or take in as if by swallowing: absorb - "swallow the financial loss" "watch night swallow the valley"
3 to accept without question, protest, or resentment "swallow an insult" "a hard story to swallow"
4 take back retract "had to swallow my words"
5 to keep from expressing or showing: repress - swallowed my anger
6 to utter (as words) indistinctly
intransitive verb
1 to receive something into the body through the mouth and esophagus
2 to perform the action characteristic of swallowing something especially under emotional stress
Dad has done a lot of swallowing lately. I don't know that any of it has been easy. But the swallowing I'm excited about is related to food. He actually had his first "meal" today. I don't remember exactly what the staff told me, except that it was all sliced, diced, minced or otherwise mashed into the consistency of baby food. I know that the biggest worry related to him swallowing has been aspiration and/or choking. Puree the food so that choking is less likely. And thicken liquids to reduce the aspiration risk. I didn't try it personally, but I'm told he drank something the consistency of honey. Hopefully it all tasted good, Mom did comment that it smelled delicious.
The girls and I spent some time with him last night. He was asleep when we entered, but it didn't take long for our ensemble to rouse him from his slumber. Not intentionally, I think we might just be inherently noisy.
He responded well to our visit, but was obviously tired. We updated him on the last few days of our lives, including a rather unfortunate 'D' in 6th grade Spanish. We talked on about the progress on our new house, paying particular attention to the coloring of the kitchen tile and granite. I don't know if he feigned interest for our benefit, but he did seem to enjoy the talk. His voice is still quiet, and I understand only a few words. But it's still good to hear his voice, and see him work through this stage of rehabilitation.
He was alert and responsive enough to answer a few questions for me. While I understand that he can't move his right side, I didn't understand if that included sensation. I've been worried that he could be in pain, and unable to remedy the situation. In response to my question about feeling in his right arm, he simply shook his head 'no'.
I've been worried about his vision as well. Knowing that he had limited vision in his left eye due to the macular degeneration, I was worried that the stroke might have affected his right eye. Again, he responsed to my question, but this time when asked if he could see out of his right eye, he shook his head 'yes'.
We finished our visit and said our goodbyes as the staff came in to finish off his feeding for the day. This time, no swallowing. We were told previously, that the path to eating would be like everything else at this time in his recovery; one step at a time, accepting improvements as they come and providing support and encouragement as he continues down the path of recovery.
Monday, March 9, 2009
A day off
Dad is a work-a-holic. This won't come as news to anybody that knows him well. It was something of a disagreement between us for the ~15 years that we worked side by side. Personally, I blame it on his German heritage.
Vacations, for example. My own children accuse me of having a short memory, but I'm pretty sure that I can count on one hand the number of "family" vacations that I remember from my own childhood. Dad isn't cheap, and certainly not afraid of being away from home. It was just the time away from projects that needed his attention that was the issue.
Roughly one year ago, my dear wife pointed out that my own children had experienced an underwhelming total of two family vacations in their first 10 years on this planet. That discussion was the beginning of what would become our 2008 family Disneyworld vacation. We extended an invitation to Mom and Dad, knowing that the odds weren't good that he'd concede. If you've looked at the pictures on this page, you already know that he gave in.
So, Dad took a day off. Actually, he took seven days off. Mind you, this wasn't without a good deal of resistance. But he made sure that I didn't see any of it (a little bird told me). Actually, now that I think of it, I believe his exact comments were something along the lines of "SEVEN DAYS, HOW ON EARTH CAN WE STAY THERE FOR SEVEN DAYS?!?!"
In spite of my enthusiastic pace in what some of my family mistook as an effort to walk them all into early graves, everyone stayed on for the full duration. Dad walked on through some sort of foot injury, and by virtue of compensating ended up with muscle spasms. He walked on through the back pain until late in the night on day two. That's when he and I found ourselves in a cab, driving to an all night clinic in Orlando. But not to fret, after a muscle relaxant and a good nights rest, Dad was ready to continue onward as we trekked through the world of Mickey.
We had been home for several weeks when Dad thanked me. He was laughing when he admitted to his reluctance. But acknowledged having more fun than he expected. I never expected thanks, I was just glad for his company. But I was touched.
I took a day off today. Not from work, but I did not make it to the rehab center tonight. I played soccer dad, I provided dinner to my children (thank you Subway), and I assisted with homework. Oh, and I think I now understand the inner workings of the 6th grade female social circle.
Dad wasn't alone. The rest of the family spent time with him, focused around this evening. Mom relayed a relaxed time together. She says that they talked at length. And while she understood very little of what he said, his tone and tempo seemed consistent with any normal conversation.
I can't say whether Dad hears his voice as we do, but I still have confidence that he's getting better. I believe that he's stopped taking days off, and is now focusing on his newest project.
Vacations, for example. My own children accuse me of having a short memory, but I'm pretty sure that I can count on one hand the number of "family" vacations that I remember from my own childhood. Dad isn't cheap, and certainly not afraid of being away from home. It was just the time away from projects that needed his attention that was the issue.
Roughly one year ago, my dear wife pointed out that my own children had experienced an underwhelming total of two family vacations in their first 10 years on this planet. That discussion was the beginning of what would become our 2008 family Disneyworld vacation. We extended an invitation to Mom and Dad, knowing that the odds weren't good that he'd concede. If you've looked at the pictures on this page, you already know that he gave in.
So, Dad took a day off. Actually, he took seven days off. Mind you, this wasn't without a good deal of resistance. But he made sure that I didn't see any of it (a little bird told me). Actually, now that I think of it, I believe his exact comments were something along the lines of "SEVEN DAYS, HOW ON EARTH CAN WE STAY THERE FOR SEVEN DAYS?!?!"
In spite of my enthusiastic pace in what some of my family mistook as an effort to walk them all into early graves, everyone stayed on for the full duration. Dad walked on through some sort of foot injury, and by virtue of compensating ended up with muscle spasms. He walked on through the back pain until late in the night on day two. That's when he and I found ourselves in a cab, driving to an all night clinic in Orlando. But not to fret, after a muscle relaxant and a good nights rest, Dad was ready to continue onward as we trekked through the world of Mickey.
We had been home for several weeks when Dad thanked me. He was laughing when he admitted to his reluctance. But acknowledged having more fun than he expected. I never expected thanks, I was just glad for his company. But I was touched.
I took a day off today. Not from work, but I did not make it to the rehab center tonight. I played soccer dad, I provided dinner to my children (thank you Subway), and I assisted with homework. Oh, and I think I now understand the inner workings of the 6th grade female social circle.
Dad wasn't alone. The rest of the family spent time with him, focused around this evening. Mom relayed a relaxed time together. She says that they talked at length. And while she understood very little of what he said, his tone and tempo seemed consistent with any normal conversation.
I can't say whether Dad hears his voice as we do, but I still have confidence that he's getting better. I believe that he's stopped taking days off, and is now focusing on his newest project.
Sunday, March 8, 2009
Addidas or Nike?
Not a question we've faced before as it relates to Dad. But it looks like one of these fine manufacturers of comfortable clothing is going to be occupying the majority of his drawer space for the time being. Yesterday it was a snazzy new pair of sweatpants, but the choice for today is a much cooler pair of exercise shorts.
And so it is that the man who was seldom caught out of trousers or slacks, is now spending all of his time in Adidas exercise shorts. He does seem to be comfortable, and it's certainly better than the hospital gown. But we've already discussed this previously.
More interaction with the staff from the rehab facility today. And once again, they continue to impress. Professional, efficient and they continue to go out of their way to be polite and kind. Such a stark contrast to where we were the last two weeks.
I promised Dad that I'd bring him some food. I thought out some options, but I don't think I hit on his favorite. Don't get me wrong, he made several expressions of approval as I ran through the list of places that I know he frequents regularly. The deal is pretty simple; he gets back to swallowing real food, and I deliver on the meal. I hope I'm buying soon.
His voice is weaker than prior to the stroke Not that this is a surprise, or that I have any idea what it means. I'm not sure why, or how much stronger it will get. It's certainly understandable. I'm sure his energy level is low, and it could obviously be tied to the weakness on his right side. He's also getting better with syllables and sounds. He's a long way from delivering a speech or hosting a talk show, but he's closer to being understandable.
Oh, I almost forgot. He answered the phone today. I'm not sure how they coordinated it, but Mom called, and he answered. She just wanted to let him know that she'd be up soon. Now, maybe they worked it out in advance, but something so simple; something I certainly try to avoid around my own house, and something we all take for granted. But he answered the phone. Go figure.
And so it is that the man who was seldom caught out of trousers or slacks, is now spending all of his time in Adidas exercise shorts. He does seem to be comfortable, and it's certainly better than the hospital gown. But we've already discussed this previously.
More interaction with the staff from the rehab facility today. And once again, they continue to impress. Professional, efficient and they continue to go out of their way to be polite and kind. Such a stark contrast to where we were the last two weeks.
I promised Dad that I'd bring him some food. I thought out some options, but I don't think I hit on his favorite. Don't get me wrong, he made several expressions of approval as I ran through the list of places that I know he frequents regularly. The deal is pretty simple; he gets back to swallowing real food, and I deliver on the meal. I hope I'm buying soon.
His voice is weaker than prior to the stroke Not that this is a surprise, or that I have any idea what it means. I'm not sure why, or how much stronger it will get. It's certainly understandable. I'm sure his energy level is low, and it could obviously be tied to the weakness on his right side. He's also getting better with syllables and sounds. He's a long way from delivering a speech or hosting a talk show, but he's closer to being understandable.
Oh, I almost forgot. He answered the phone today. I'm not sure how they coordinated it, but Mom called, and he answered. She just wanted to let him know that she'd be up soon. Now, maybe they worked it out in advance, but something so simple; something I certainly try to avoid around my own house, and something we all take for granted. But he answered the phone. Go figure.
Saturday, March 7, 2009
It's about time
Dad is out of the hospital, and out of that blasted gown that prohibits any kind of modesty. I understand that your health is priority one, but I really wonder how much of that recovery is inhibited when they strip away your pride and self-respect.
Mom went shopping yesterday and Dad landed some fancy new "comfy" clothes. I offered up my sweatpants, but we both realized that they would be woefully too short. And that's still a little irritating. Aren't you supposed to grow taller than your father? I surrendered that fantasy some time ago, and settled on reaching 6'0". At my peak (yes, I seem to be shrinking) I reached 5' 11 3/4". I believe that our creator has a sense of humor.
Back to Dad. I don't think it was really that clear to me until today, but the hospital really does force a sense of surrender. My youngest and I had taken to dropping in on him around 7:30. This was on the way to her school, so we could both visit Dad at the hospital, and still get her dropped off before the first bell. It just so happens that this seems to be around the time of shift change, so there is a flurry of activity.
But it was this one nursing assistant that really stuck with me. Determinedly focused on completing her duties, her patient, and his wishes or preferences were really a distant second thought. Her attempt to check his blood sugar accurately was hampered by her constant fumbling with the equipment and struggles to follow the precise steps of the morning routine. Dad complied with every request, and although she did talk to him, I noticed she never made eye contact. It was the cotton ball, dangling from his recently pricked finger after she finished and walked away, that I can't get out of my mind.
It was kind of like static. You've opened a present, or container and a piece of the plastic covering sticks to your hand. So you reach over with the other hand, and you successfully achieve it's release, only to find that it's now stuck to the other hand. This goes on for a little bit, while you look like some silly dog chasing it's tail. Dad's attempts to remove the cotton ball, stuck to his finger, by using only the fingers of that same hand. I can't take it very long before I reach over and help him with it.
...
I would encourage anyone that wants to visit him to feel comfortable doing so. I think he needs all of the positive energy that we can send his way. His schedule for the weekdays are rather full, between all of his therapy sessions and a few naps in between. Weekends are better, but he may be whisked away at any moment for more rehab. If you do want to stop by, his rehab is normally complete by 4:00 in the afternoon. I don't know how long it will take him to get into any kind of routine, but I'd assume that he'll be fairly sleepy by sometime in the evening.
We saw his room at the rehab center early this afternoon. His window is huge, and actually has a view that extends beyond the roof of an adjacent building. The room is spacious and feels much warmer and intended for comfort. Even on the way in, it felt good. We were greeted by smiling faces and warm greetings. This really does feel like a place for healing.
He was asleep when we arrived, and his right arm had fallen down between the mattress and the side rail. The process of releasing his arm from it's captive state woke him up. He immediately made me laugh. When I suggested that we slide him over so his arm didn't once again fall into the crevice, he sort of shrugged and indicated a general state of indifference on the whole issue.
He brightened up when he saw his grandaughters and tried diligently to talk to them. For the first time, I understood a few of the words. The words weren't an immediate response to a question, but the beginning of a sentence that was thought through. Words like "I" or "Well". Simple, but certainly something good to hear after the last two weeks of silence and frustration.
Unfortunately, our visit was cut short by the physical therapists. Okay, it's unfortunate that it was cut short, but I have no complaints. The fact that he's getting rehabilitation is wonderful, and the therapists were warm, kind and gentle with him. They made eye contact, and showed him the respect that he's earned through a lifetime of accomplishment and caring for those around him.
Mom went shopping yesterday and Dad landed some fancy new "comfy" clothes. I offered up my sweatpants, but we both realized that they would be woefully too short. And that's still a little irritating. Aren't you supposed to grow taller than your father? I surrendered that fantasy some time ago, and settled on reaching 6'0". At my peak (yes, I seem to be shrinking) I reached 5' 11 3/4". I believe that our creator has a sense of humor.
Back to Dad. I don't think it was really that clear to me until today, but the hospital really does force a sense of surrender. My youngest and I had taken to dropping in on him around 7:30. This was on the way to her school, so we could both visit Dad at the hospital, and still get her dropped off before the first bell. It just so happens that this seems to be around the time of shift change, so there is a flurry of activity.
But it was this one nursing assistant that really stuck with me. Determinedly focused on completing her duties, her patient, and his wishes or preferences were really a distant second thought. Her attempt to check his blood sugar accurately was hampered by her constant fumbling with the equipment and struggles to follow the precise steps of the morning routine. Dad complied with every request, and although she did talk to him, I noticed she never made eye contact. It was the cotton ball, dangling from his recently pricked finger after she finished and walked away, that I can't get out of my mind.
It was kind of like static. You've opened a present, or container and a piece of the plastic covering sticks to your hand. So you reach over with the other hand, and you successfully achieve it's release, only to find that it's now stuck to the other hand. This goes on for a little bit, while you look like some silly dog chasing it's tail. Dad's attempts to remove the cotton ball, stuck to his finger, by using only the fingers of that same hand. I can't take it very long before I reach over and help him with it.
...
I would encourage anyone that wants to visit him to feel comfortable doing so. I think he needs all of the positive energy that we can send his way. His schedule for the weekdays are rather full, between all of his therapy sessions and a few naps in between. Weekends are better, but he may be whisked away at any moment for more rehab. If you do want to stop by, his rehab is normally complete by 4:00 in the afternoon. I don't know how long it will take him to get into any kind of routine, but I'd assume that he'll be fairly sleepy by sometime in the evening.
We saw his room at the rehab center early this afternoon. His window is huge, and actually has a view that extends beyond the roof of an adjacent building. The room is spacious and feels much warmer and intended for comfort. Even on the way in, it felt good. We were greeted by smiling faces and warm greetings. This really does feel like a place for healing.
He was asleep when we arrived, and his right arm had fallen down between the mattress and the side rail. The process of releasing his arm from it's captive state woke him up. He immediately made me laugh. When I suggested that we slide him over so his arm didn't once again fall into the crevice, he sort of shrugged and indicated a general state of indifference on the whole issue.
He brightened up when he saw his grandaughters and tried diligently to talk to them. For the first time, I understood a few of the words. The words weren't an immediate response to a question, but the beginning of a sentence that was thought through. Words like "I" or "Well". Simple, but certainly something good to hear after the last two weeks of silence and frustration.
Unfortunately, our visit was cut short by the physical therapists. Okay, it's unfortunate that it was cut short, but I have no complaints. The fact that he's getting rehabilitation is wonderful, and the therapists were warm, kind and gentle with him. They made eye contact, and showed him the respect that he's earned through a lifetime of accomplishment and caring for those around him.
Thursday, March 5, 2009
The fog is lifting
While this might have been an appropriate title for yesterday, I feel more comfortable using it today. I've talked about moments of clarity overshadowed by hours of confusion in previous posts. Keeping in mind that he still sleeps most of the time. But we were getting glimpses here and there that he was still in there, just not able to get through to us.
Within the last 48 to 72 hours, I believe that he's finally broken through that fog of confusion and is able to more fully understand what is happening. Within the last 24 hours, his attempts to speak have seemed much more purpose driven. I still can't understand what he's saying, but it's much less of what we took to calling the "charlie brown speech" and more variety in the tone and variety of sound.
Charlie brown speech? During almost any of those old Charlie Brown "made for TV" animated shorts, somebody would end up on the phone with an adult. While we could hear Charlie, or Lucy or whoever it was on our end, all we heard from the other was "mwaaa mwa mwa mwaaaa." That's the best I can do to explain what he has sounded like prior to the last day or so.
Progress. Baby steps.
His emotions are also more in keeping with what you'd expect. Sadness, frustration and a determination to communicate on the level that he wants. That last part is good to see. Just one more reminder that he's still here and still fighting to regain himself.
This is also his last scheduled night at the hospital. Arrangements have been made to transport him to the rehabilitation center tomorrow. Selfishly, I'm certainly going to miss the ease with which I could visit him. It was just too easy to stop by as I drive the girls to school each morning, and simply say "hi." But I remain optimistic that we are sending him where he needs to be at this stage in his recovery.
Within the last 48 to 72 hours, I believe that he's finally broken through that fog of confusion and is able to more fully understand what is happening. Within the last 24 hours, his attempts to speak have seemed much more purpose driven. I still can't understand what he's saying, but it's much less of what we took to calling the "charlie brown speech" and more variety in the tone and variety of sound.
Charlie brown speech? During almost any of those old Charlie Brown "made for TV" animated shorts, somebody would end up on the phone with an adult. While we could hear Charlie, or Lucy or whoever it was on our end, all we heard from the other was "mwaaa mwa mwa mwaaaa." That's the best I can do to explain what he has sounded like prior to the last day or so.
Progress. Baby steps.
His emotions are also more in keeping with what you'd expect. Sadness, frustration and a determination to communicate on the level that he wants. That last part is good to see. Just one more reminder that he's still here and still fighting to regain himself.
This is also his last scheduled night at the hospital. Arrangements have been made to transport him to the rehabilitation center tomorrow. Selfishly, I'm certainly going to miss the ease with which I could visit him. It was just too easy to stop by as I drive the girls to school each morning, and simply say "hi." But I remain optimistic that we are sending him where he needs to be at this stage in his recovery.
Wednesday, March 4, 2009
Tears of Joy
Okay, they weren't my tears this time. And he wasn't crying out of joy. But seeing his response to what I was saying made me joyful.
Let me explain. Due to the PEG procedure I mentioned yesterday, I was unable to visit with Dad this morning. They took him from his room around 6:30 AM. Mom was up at the crack of dawn and able to see him beforehand. The procedure was scheduled for 8:00 AM and didn't take any longer than the 20-30 minutes the doctor estimated previously. Mom called to assure me that he was fine before lunch.
In keeping with my attempt to "normalize" my life again, I didn't visit him at lunch.
I had a rather eventful day. Sort of along the lines of that saying "be careful what you wish for, you just might get it." On the way out the door, I had that familiar urge. Nothing out of the ordinary, something I've done on many occasions previously. I wanted to call Dad and talk about my day.
That served as a quick reminder of my next destination. I needed to stop by and see him on the way home. Awake or asleep, I decided to talk with him anyway.
I was pleasantly surprised to find him awake when I arrived. Awake, alert and watching me enter the room. He had the sheet and blanket pulled up to his chin and was still clearly cold. I searched around the room until I noticed the wall unit blowing cold air into the room. I turned it down, talking with him the entire time.
I was even more surprised to gauge his obvious understanding of what I was doing. I seized the opportunity and proceeded to talk about my day. So, let's put this in perspective; he's recovering from a massive stroke and subsequent brain surgery, and he's still playing Dad. He's focusing intently on what I'm saying, smiling where appropriate, obviously understanding the story as I relay it to him.
Not wanting to waste any of this time, I continued to talk. I told him about the blog. About my initial attempts to reconcile my feelings with what was happening and how it migrated into a tool to communicate his condition with all those that are following his story. I went on to talk about an email from a cousin. An email that offered prayers and love, and confidence that he would be back with us soon.
That's when he cried.
I was prepared for almost anything, but I wasn't prepared for that. In hindsight, I feel terribly inconsiderate. How else should he feel? Why shouldn't he be sad, or frustrated or depressed? But that's just it. He hasn't shown any of that emotion until now. He hasn't shown that level of comprehension as it relates to his situation or the seriousness of his condition until now.
I know it sounds bad, but his tears of sadness were my tears of joy. Joy to know that he's aware, joy to know that he's understanding, joy to know that he won't accept his situation as it is.
Let me explain. Due to the PEG procedure I mentioned yesterday, I was unable to visit with Dad this morning. They took him from his room around 6:30 AM. Mom was up at the crack of dawn and able to see him beforehand. The procedure was scheduled for 8:00 AM and didn't take any longer than the 20-30 minutes the doctor estimated previously. Mom called to assure me that he was fine before lunch.
In keeping with my attempt to "normalize" my life again, I didn't visit him at lunch.
I had a rather eventful day. Sort of along the lines of that saying "be careful what you wish for, you just might get it." On the way out the door, I had that familiar urge. Nothing out of the ordinary, something I've done on many occasions previously. I wanted to call Dad and talk about my day.
That served as a quick reminder of my next destination. I needed to stop by and see him on the way home. Awake or asleep, I decided to talk with him anyway.
I was pleasantly surprised to find him awake when I arrived. Awake, alert and watching me enter the room. He had the sheet and blanket pulled up to his chin and was still clearly cold. I searched around the room until I noticed the wall unit blowing cold air into the room. I turned it down, talking with him the entire time.
I was even more surprised to gauge his obvious understanding of what I was doing. I seized the opportunity and proceeded to talk about my day. So, let's put this in perspective; he's recovering from a massive stroke and subsequent brain surgery, and he's still playing Dad. He's focusing intently on what I'm saying, smiling where appropriate, obviously understanding the story as I relay it to him.
Not wanting to waste any of this time, I continued to talk. I told him about the blog. About my initial attempts to reconcile my feelings with what was happening and how it migrated into a tool to communicate his condition with all those that are following his story. I went on to talk about an email from a cousin. An email that offered prayers and love, and confidence that he would be back with us soon.
That's when he cried.
I was prepared for almost anything, but I wasn't prepared for that. In hindsight, I feel terribly inconsiderate. How else should he feel? Why shouldn't he be sad, or frustrated or depressed? But that's just it. He hasn't shown any of that emotion until now. He hasn't shown that level of comprehension as it relates to his situation or the seriousness of his condition until now.
I know it sounds bad, but his tears of sadness were my tears of joy. Joy to know that he's aware, joy to know that he's understanding, joy to know that he won't accept his situation as it is.
Tuesday, March 3, 2009
Lose the battle, win the war?
Dad's status hasn't changed much the last few days. He still sleeps most of the time. When he's awake and alert, he'll make facial gestures indicating some level of understanding to what is happening around him. Including who is talking to him at the time, and even the subject of the conversation. But he won't respond to direct questions. At least not in any definitive means towards communication.
He's still pulling out his feeding tube. And while I can't honestly say that I blame him, it isn't helping matters. I'm not exactly sure how you put a tube through the nose and it ends up in the stomach. Seems to me that it's just as likely that it'd end up in the lungs. Maybe that's why they x-ray him every time they have to put the tube back in place? Needless to say, the hospital staff are worried that the constant removal and replacement of the tube is hurting more than it is helping.
He wouldn't need the feeding tube if he were able to eat. And while nobody can say with any certainty that he can't eat, they don't want to risk him aspirating his dinner into his lungs. If I understand things correctly, when he lost almost all function on the right side of his body, he lost the functionality of the right side of his esophagus as well. Or so we think. Something of a catch-22. He needs to eat, but we can't feed him while he's at risk. The only way to tell if he's not a risk is to feed him.
I mentioned the port in an earlier post. It's officially called Percutaneous Endoscopic Gastrostomy (PEG). Mom approved it today, after we all discussed it. I have reservations, but I understand why it is being done at this time.
I didn't mention that they tested his swallowing ability. It looks like he's swallowing normally. During our visit today, I was told that he actually ate pudding today. So, he can swallow after all. Which leads to the earlier question, why are we still doing the PEG tomorrow? Unfortunately, he isn't awake or alert long enough to actually eat a meal. No meal equals no energy equals no recovery.
When this title popped into my head, I was thinking in terms of losing the battle on the PEG procedure, but winning the war against his disability. And it struck me how much a part of daily life this really is. More a constant state of compromise than losing battles and winning wars, but you get the idea. Small things we do when we don't want to in the effort for a better day or a better life. I'll eat the salad instead of the hamburger in the hopes of lowering my cholesterol. I'll make the bed (even though she got out of the bed last) in the hopes that she will forgive me turning up the volume during the basketball game.
And there it is Dad. I'm compromising on the PEG in the hopes that you will be better energized, more comfortable, and continue down the long road towards recovery. But hurry up, the basketball season is coming to an end.
He's still pulling out his feeding tube. And while I can't honestly say that I blame him, it isn't helping matters. I'm not exactly sure how you put a tube through the nose and it ends up in the stomach. Seems to me that it's just as likely that it'd end up in the lungs. Maybe that's why they x-ray him every time they have to put the tube back in place? Needless to say, the hospital staff are worried that the constant removal and replacement of the tube is hurting more than it is helping.
He wouldn't need the feeding tube if he were able to eat. And while nobody can say with any certainty that he can't eat, they don't want to risk him aspirating his dinner into his lungs. If I understand things correctly, when he lost almost all function on the right side of his body, he lost the functionality of the right side of his esophagus as well. Or so we think. Something of a catch-22. He needs to eat, but we can't feed him while he's at risk. The only way to tell if he's not a risk is to feed him.
I mentioned the port in an earlier post. It's officially called Percutaneous Endoscopic Gastrostomy (PEG). Mom approved it today, after we all discussed it. I have reservations, but I understand why it is being done at this time.
I didn't mention that they tested his swallowing ability. It looks like he's swallowing normally. During our visit today, I was told that he actually ate pudding today. So, he can swallow after all. Which leads to the earlier question, why are we still doing the PEG tomorrow? Unfortunately, he isn't awake or alert long enough to actually eat a meal. No meal equals no energy equals no recovery.
When this title popped into my head, I was thinking in terms of losing the battle on the PEG procedure, but winning the war against his disability. And it struck me how much a part of daily life this really is. More a constant state of compromise than losing battles and winning wars, but you get the idea. Small things we do when we don't want to in the effort for a better day or a better life. I'll eat the salad instead of the hamburger in the hopes of lowering my cholesterol. I'll make the bed (even though she got out of the bed last) in the hopes that she will forgive me turning up the volume during the basketball game.
And there it is Dad. I'm compromising on the PEG in the hopes that you will be better energized, more comfortable, and continue down the long road towards recovery. But hurry up, the basketball season is coming to an end.
Monday, March 2, 2009
Knock Knock
"Who's there?" you ask. Unfortunately, I don't know.
And so it is with Dad at this point in his recovery. As I've mentioned previously, he has his high moments and his low moments. After several interactions where I get essentially no response from him, he surprises me, and the Dad I know shows as brightly as ever.
He was exhausted this morning when I stopped by. Apparently, he had just had another MRI. Or catscan, or whatever means they used to poke inside his head this time. Funny, I didn't think to ask again about the results. Anyway, he had once again removed his feeding tube and was attempting to do the same to various other tubes when I arrived. I can't say that I blame him, but he was clearly very confused. It is for these reasons that I hear rumors of restraints being used again.
After a lunchtime visit with the hospital rehabilitation representatives, I tried talking to him briefly. He was awake, and coherent. I told him that the hospital was wanting to remove the feeding tube and surgically move it directly to his stomach. He frowned and made a comically sad face. He was playing it up, the same guy I knew just a few days ago. I winked at him during this visit, and he raised both eyebrows in response. Moments later I asked him to squeeze my hand in response to a question, but I got nothing in return.
Now, I have to be honest here. Dad's hearing isn't what it used to be. He's far from deaf, but if pressed, he'd admit to "some" hearing loss. And for those that don't already know, he's also fighting macular degeneration. It's worse in his left eye than his right. The surgery that saved some vision in his left eye, also left him with a rather large blank spot in the center of his vision. The day before his stroke, he mentioned eye surgery similar to what Mom recently went through. I don't remember the details, but he was excited that it would improve his vision.
Go through the list with me:
Hearing loss
Vision impairment
Unable to speak, and possibly interpret everything he hears
Can't move the right side of his body
Unknown other limitations due to the clot and subsequent bleeding
Unknown other limitations due to the residual swelling inside his head
And yet, he's still finding ways to communicate as he can during those brief moments of clarity of thought. So, upon further thought, I think I can answer your earlier question.
It's still Dad.
And so it is with Dad at this point in his recovery. As I've mentioned previously, he has his high moments and his low moments. After several interactions where I get essentially no response from him, he surprises me, and the Dad I know shows as brightly as ever.
He was exhausted this morning when I stopped by. Apparently, he had just had another MRI. Or catscan, or whatever means they used to poke inside his head this time. Funny, I didn't think to ask again about the results. Anyway, he had once again removed his feeding tube and was attempting to do the same to various other tubes when I arrived. I can't say that I blame him, but he was clearly very confused. It is for these reasons that I hear rumors of restraints being used again.
After a lunchtime visit with the hospital rehabilitation representatives, I tried talking to him briefly. He was awake, and coherent. I told him that the hospital was wanting to remove the feeding tube and surgically move it directly to his stomach. He frowned and made a comically sad face. He was playing it up, the same guy I knew just a few days ago. I winked at him during this visit, and he raised both eyebrows in response. Moments later I asked him to squeeze my hand in response to a question, but I got nothing in return.
Now, I have to be honest here. Dad's hearing isn't what it used to be. He's far from deaf, but if pressed, he'd admit to "some" hearing loss. And for those that don't already know, he's also fighting macular degeneration. It's worse in his left eye than his right. The surgery that saved some vision in his left eye, also left him with a rather large blank spot in the center of his vision. The day before his stroke, he mentioned eye surgery similar to what Mom recently went through. I don't remember the details, but he was excited that it would improve his vision.
Go through the list with me:
Hearing loss
Vision impairment
Unable to speak, and possibly interpret everything he hears
Can't move the right side of his body
Unknown other limitations due to the clot and subsequent bleeding
Unknown other limitations due to the residual swelling inside his head
And yet, he's still finding ways to communicate as he can during those brief moments of clarity of thought. So, upon further thought, I think I can answer your earlier question.
It's still Dad.
Sunday, March 1, 2009
Holes
Dad used to sing this song when I was young. Almost always in the car. I don't know the title, but it goes something like this...
There's a hole, there's a hole.
There's a hole in the bottom of the sea.
There's a log in the hole in the bottom of the sea.
There's a log in the hole in the bottom of the sea.
There's a hole, there's a hole.
There's a hole in the bottom of the sea.
You continue to add to it, until you eventually end up with:
There's a speck on the flea on the hair on the fly on the wart on the frog on the knot on the log in the hole in the bottom of the sea.
This is something that I felt obligated to pass onto my children. Who now think I'm crazy.
...
The doctor wants to put another hole in my father. This time into his stomach, presumable from somewhere in his belly. They want to remove the feeding tube, which is presently reaching his stomach via the hole in his nose. This would allow them to remove the feeding tube, something I'm sure he would appreciate. I'm worried about more procedures and the risk of infection, but I'll defer to those more medically gifted than myself to advise us on what is best for his health and longevity.
At the same time, there is some level of concern, or at least caution, as it relates to bowel movements. Since he hasn't had one for the last 8 days. In his defense, I'm not sure anyone would, if they had to subsist on the brown liquid that fits down the feeding tube. Regardless, they are working to make sure that all of the plumbing is still functioning as it should.
Obviously, Dad is still on the catheter as well. But this is sort of funny. I don't know how, I wasn't privy to that part of the story, but the catheter bag fell from the bed. My oldest daughter (the one that plans on being a doctor) made "icky" noises, and was thoroughly grossed out. My youngest daughter gave her a dirty look, reached over and picked up the bag and hooked it back on the bed.
Finally, the incision in his scalp continues to heal. But it does continue to bleed a little. Something about the sight of blood on his pillow or hand (he rests his head on his left hand a lot) is still disconcerting. Nobody panics, and the nurses reassure us that this is normal, it just needs more time to fully heal and close up.
...
My oldest insisted on reading jokes to Dad for a while earlier today. Now, I'm the first to admit that I'm not very tolerant when it comes to 12 year old humor. But Dad was fairly alert and seemed to be listening to both her and my youngest as they took turns reading from their magazines. Long after I would have asked her to stop, he gently reached up and took the magazine from her. She cooperated, wanting to see what he was interested in. He closed the magazine and layed it on his chest.
I have a new respect for barbers. It's much harder to shave a face that isn't your own. But I'm getting better. Some time after our return from Disney last June, Dad gave in and bought the same electric razor that I use. Had it been any other razor, I wouldn't have known how to keep it charged, or clean. For that matter, I wouldn't have understood how to get the closest shave by moving it this way, or the other along the jaw line. He looks better cleanly shaven, and I like to think that it makes him a little more comfortable.
There's a hole, there's a hole.
There's a hole in the bottom of the sea.
There's a log in the hole in the bottom of the sea.
There's a log in the hole in the bottom of the sea.
There's a hole, there's a hole.
There's a hole in the bottom of the sea.
You continue to add to it, until you eventually end up with:
There's a speck on the flea on the hair on the fly on the wart on the frog on the knot on the log in the hole in the bottom of the sea.
This is something that I felt obligated to pass onto my children. Who now think I'm crazy.
...
The doctor wants to put another hole in my father. This time into his stomach, presumable from somewhere in his belly. They want to remove the feeding tube, which is presently reaching his stomach via the hole in his nose. This would allow them to remove the feeding tube, something I'm sure he would appreciate. I'm worried about more procedures and the risk of infection, but I'll defer to those more medically gifted than myself to advise us on what is best for his health and longevity.
At the same time, there is some level of concern, or at least caution, as it relates to bowel movements. Since he hasn't had one for the last 8 days. In his defense, I'm not sure anyone would, if they had to subsist on the brown liquid that fits down the feeding tube. Regardless, they are working to make sure that all of the plumbing is still functioning as it should.
Obviously, Dad is still on the catheter as well. But this is sort of funny. I don't know how, I wasn't privy to that part of the story, but the catheter bag fell from the bed. My oldest daughter (the one that plans on being a doctor) made "icky" noises, and was thoroughly grossed out. My youngest daughter gave her a dirty look, reached over and picked up the bag and hooked it back on the bed.
Finally, the incision in his scalp continues to heal. But it does continue to bleed a little. Something about the sight of blood on his pillow or hand (he rests his head on his left hand a lot) is still disconcerting. Nobody panics, and the nurses reassure us that this is normal, it just needs more time to fully heal and close up.
...
My oldest insisted on reading jokes to Dad for a while earlier today. Now, I'm the first to admit that I'm not very tolerant when it comes to 12 year old humor. But Dad was fairly alert and seemed to be listening to both her and my youngest as they took turns reading from their magazines. Long after I would have asked her to stop, he gently reached up and took the magazine from her. She cooperated, wanting to see what he was interested in. He closed the magazine and layed it on his chest.
I have a new respect for barbers. It's much harder to shave a face that isn't your own. But I'm getting better. Some time after our return from Disney last June, Dad gave in and bought the same electric razor that I use. Had it been any other razor, I wouldn't have known how to keep it charged, or clean. For that matter, I wouldn't have understood how to get the closest shave by moving it this way, or the other along the jaw line. He looks better cleanly shaven, and I like to think that it makes him a little more comfortable.
Milestones
Day 7, end of week one. Hard to believe that much time has gone by already. I'm sure that I'll say the same thing at the end of the first month, year, etc. Then again, it's hard to believe that my children are growing so fast, that I've been married so long (love you dear) and that I'm getting so blasted old. But those are all topics for a different blog.
Dad was transferred from ICU to a different wing. He'll still be monitored by telemetry, and receive more guarded care from the nursing staff than a "normal" room. But really, what is normal in hospital terms? I've been told that we're in the "stroke wing" and I've also been told that the hospital doesn't have a stroke wing. Whatever it is, we're in it. He has a phone, more freedom of movement, more privacy and much less restrictive visiting hours.
My nine year old daughter got to visit with Dad for the first time since this journey began. I hope it was a healing experience for them both. She did well at first, and then began to tear up as she struggled to talk to him. I couldn't help but notice that he was doing the same thing. I'm extremely proud of both of my daughters. The level of compassion and maturity that they have shown through this whole thing has been inspirational. I think they're teaching me more than I'm teaching them.
Dad said a word. Mom and one of my cousins were visiting, she said something about leaving and out of habit finished with, "alright?" He responded in like manner, "alright." Word began to spread quickly, and most everyone was thrilled that he was progressing. Had I been there I would likely have experienced the same enthusiasm that my mother and cousin did. But I was skeptical. After talking with the speech therapist, I understand better what happened. She explained that automatic responses are generated in a different part of the brain, and what he did is completely normal. It's certainly good insofar as it's clear that he understood what he was hearing. Unfortunately, it doesn't show progress in his ability to formulate sentences or even words, at will. On that note, he is mumbling more, and trying very hard to be coherent. I believe that he will talk again.
We visited with that rehabilitation center I mentioned previously. It's amazing. We have an appointment to visit with the rehab people at his current hospital. I just don't see how they can compete with what we saw today. Swimming pool, greenhouse, transitional apartments, spacious rooms, etc. We'll see tomorrow. While I'd hate the 30 minute drive, he needs the best opportunity for recovery that we can provide.
How close are (or were) you to your parents? I consider it to be a blessing to be a part of a large extended family, and most of these nuclear families are still extremely close. Many of them work (or worked) together, further strengthening the bond. Some vacation together, live in the same neighborhoods, etc. The week spent living in the ICU waiting room was eye opening. The other large families, loud and happy together, the mother sitting alone crying over her daughter, the strong silent types and the couples wringing their hands as they tried to busy themselves between newspapers and magazines. I count myself very fortunate that I'm still close to my parents as well as my brother, sister, cousins, uncles and aunts.
Enough for now, this post, and the month are coming to an end.
Dad was transferred from ICU to a different wing. He'll still be monitored by telemetry, and receive more guarded care from the nursing staff than a "normal" room. But really, what is normal in hospital terms? I've been told that we're in the "stroke wing" and I've also been told that the hospital doesn't have a stroke wing. Whatever it is, we're in it. He has a phone, more freedom of movement, more privacy and much less restrictive visiting hours.
My nine year old daughter got to visit with Dad for the first time since this journey began. I hope it was a healing experience for them both. She did well at first, and then began to tear up as she struggled to talk to him. I couldn't help but notice that he was doing the same thing. I'm extremely proud of both of my daughters. The level of compassion and maturity that they have shown through this whole thing has been inspirational. I think they're teaching me more than I'm teaching them.
Dad said a word. Mom and one of my cousins were visiting, she said something about leaving and out of habit finished with, "alright?" He responded in like manner, "alright." Word began to spread quickly, and most everyone was thrilled that he was progressing. Had I been there I would likely have experienced the same enthusiasm that my mother and cousin did. But I was skeptical. After talking with the speech therapist, I understand better what happened. She explained that automatic responses are generated in a different part of the brain, and what he did is completely normal. It's certainly good insofar as it's clear that he understood what he was hearing. Unfortunately, it doesn't show progress in his ability to formulate sentences or even words, at will. On that note, he is mumbling more, and trying very hard to be coherent. I believe that he will talk again.
We visited with that rehabilitation center I mentioned previously. It's amazing. We have an appointment to visit with the rehab people at his current hospital. I just don't see how they can compete with what we saw today. Swimming pool, greenhouse, transitional apartments, spacious rooms, etc. We'll see tomorrow. While I'd hate the 30 minute drive, he needs the best opportunity for recovery that we can provide.
How close are (or were) you to your parents? I consider it to be a blessing to be a part of a large extended family, and most of these nuclear families are still extremely close. Many of them work (or worked) together, further strengthening the bond. Some vacation together, live in the same neighborhoods, etc. The week spent living in the ICU waiting room was eye opening. The other large families, loud and happy together, the mother sitting alone crying over her daughter, the strong silent types and the couples wringing their hands as they tried to busy themselves between newspapers and magazines. I count myself very fortunate that I'm still close to my parents as well as my brother, sister, cousins, uncles and aunts.
Enough for now, this post, and the month are coming to an end.
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