Another day of the kinder gentler Dad...He did his PT this morning, and when he told me about it, he tells me that they had him up and walking, and that he was showing the PT guys how he could get from his bed into his wheelchair...Now, I don't want to discourage anything, but last time I was there, it took 2 nurses to make that transfer. So, I am not sure if his perception is a little askew, or if he is trying to keep on being positive...Either way, I will give him all of the support he needs. He was still very pleased with his performance at PT this morning.
He had a lot of visitors today. My Aunt and Uncle, Mom and I, Paula and Jay, and then Jim and Mary. It was pretty hot in his room, so we had taken off his gown and he was sporting the topless look...I think he was a little embarrassed, but he got over that pretty quick.:) His room is on the West side, and his window gets beat by the late afternoon sun.
He seems to be getting a little more aware of his surroundings and what is going on. And by that I mean, not what is right in front of him, but his perception of the whole ordeal. He is starting to understand more about what Mom and I have been doing behind the scenes to try and get this organized and understand all of the insurance and schedule all of the Dr. appointments, and arrange for the transportation. This in addition to visiting him, bringing him frozen yogurt, doing his laundry, work (for me)...You know, all the stuff that makes up life. Please understand, I am not complaining for a moment. Life has just shifted to something different. I wouldn't change a thing. But, my point is, he is starting to understand all of this a little better, and he is starting to worry about the impact on us and especially on my Mom. I think this may be one of the reasons he is a little more mellow lately. Although, he is also on an anti-depressant, and sometimes they take a few weeks to kick in, so that might also be contributing to his mood.
I have been taking pictures throughout the past couple weeks, but my Dad has been so adamant that he did not want them published where others could see, that I haven't done much with them. Today I printed out some of the photos and brought them in to show my Dad. The ones of his incision, because he cannot fathom what it must be like, and a couple from after surgery in the ICU, and some from my birthday dinner. He looked at them, and when we got to the ones from my birthday, there was a photo I took of my Mom and Dad posing, and then one of them kissing, and one of the three of us I took with the camera timer...He took one look at these photos and started crying and said "whatever you do, never lose these pictures. This is my family and I love these photos." Needless to say, I am printing large copies of these pix tomorrow and bringing them in to put on the wall in his room so he can always see them.
So, once again, he is really enjoying visitors. If you are interested in stopping by to see him, please keep in mind he has PT most mornings. Also, we got an appointment with the eye Dr. on Wednesday late morning, so he may be gone into the early afternoon on Wednesday. If you need info on where to go, send me an email at RockingHorseFly@cox.net and I will give you directions.
Thank you all once again for your thoughts and prayers. It is with friends and family and love that we will get through this and beyond it. I cannot express how lucky we are to be surrounded with so many wonderful, caring and thoughtful people.
Our most gracious thanks to you all.
Monday, June 30, 2008
Sunday, June 29, 2008
Tired today...
Dad was tired today, and much, well, calmer. I would not say depressed, or sad, just somehow more mellow. To be honest, he has been going full-tilt everyday on his positive thinking and enthusiasm, and I can only imagine it would make him tired.
It is Sunday, and he did not have physical therapy today, so, I am also thinking that the PT in the morning gets him up and motivated. It begins his day and gives him stamina and a reason to go on fighting. So, I am glad he had a day of resting, and here's to hoping tomorrow brings more of Mr. Determination!
He has not really had much of a problem with short term memory, but it seems to be getting better everyday. We are also working with his left side. I may have mentioned it in an earlier post, but he has what is a neglect or an inattentiveness, on his left side. This is very common with brain injuries or traumas, like a tumor. We are waiting to take him to an eye Dr. to see what (if any) changes to his eyesight have occurred, but I am thinking a lot of his problem is this neglect. It is essentially that he forgets to pay attention or acknowledge what happens on his left side. So, I can tell him that there is a glass of water on the tray to his left, and he does not see it unless I make him really try to look left. As an example, I was trying to have him read a printed joke yesterday, and he would look at the paper, and only read from the middle of the sentence to the right edge, and when he went to go on to the next line, he would start in the middle of the paragraph.
When our friend Vanessa came by yesterday, she was able to give me some pointers on how to help him to work on this. She is an occupational therapist that mostly works with brain injuries, but her suggestions and advice have been a welcome benefit. I plan on working with him more by helping him to write more, playing cards (when I told him we would start out with "Go Fish," he got a little irritated), and making him work hard to pay attention more to the left. I also want to help him with his eye/hand coordination, especially on that left side. We will know more once he has gone to the eye Dr., but for now, these things can't hurt.
Like I said, he wasn't really depressed today, but he was a little down. He really hasn't mentioned the "why me" factor all that much in the whole course of this. The biggest concern with his "why me" is what this has done to the family and friends. He looked at me today and said "boy, this has really put a lot on my family, and I just wonder why a brain tumor..." I looked right at him and said "you know what? Sh*t happens." He and my Mom were taken aback for a second, and they both looked right at me and said..."you're right...It does." Guess I ended that line of questioning...At least for tonight.:)
Love to all!
It is Sunday, and he did not have physical therapy today, so, I am also thinking that the PT in the morning gets him up and motivated. It begins his day and gives him stamina and a reason to go on fighting. So, I am glad he had a day of resting, and here's to hoping tomorrow brings more of Mr. Determination!
He has not really had much of a problem with short term memory, but it seems to be getting better everyday. We are also working with his left side. I may have mentioned it in an earlier post, but he has what is a neglect or an inattentiveness, on his left side. This is very common with brain injuries or traumas, like a tumor. We are waiting to take him to an eye Dr. to see what (if any) changes to his eyesight have occurred, but I am thinking a lot of his problem is this neglect. It is essentially that he forgets to pay attention or acknowledge what happens on his left side. So, I can tell him that there is a glass of water on the tray to his left, and he does not see it unless I make him really try to look left. As an example, I was trying to have him read a printed joke yesterday, and he would look at the paper, and only read from the middle of the sentence to the right edge, and when he went to go on to the next line, he would start in the middle of the paragraph.
When our friend Vanessa came by yesterday, she was able to give me some pointers on how to help him to work on this. She is an occupational therapist that mostly works with brain injuries, but her suggestions and advice have been a welcome benefit. I plan on working with him more by helping him to write more, playing cards (when I told him we would start out with "Go Fish," he got a little irritated), and making him work hard to pay attention more to the left. I also want to help him with his eye/hand coordination, especially on that left side. We will know more once he has gone to the eye Dr., but for now, these things can't hurt.
Like I said, he wasn't really depressed today, but he was a little down. He really hasn't mentioned the "why me" factor all that much in the whole course of this. The biggest concern with his "why me" is what this has done to the family and friends. He looked at me today and said "boy, this has really put a lot on my family, and I just wonder why a brain tumor..." I looked right at him and said "you know what? Sh*t happens." He and my Mom were taken aback for a second, and they both looked right at me and said..."you're right...It does." Guess I ended that line of questioning...At least for tonight.:)
Love to all!
Saturday, June 28, 2008
Need motivation? Stop by room 40, bed B...
So, I got to spend most of the day with Dad. My Mom got to do somethings for herself. A little shopping does wonders for anyone...:) He had a great day. I got there about 11:00, and he was finishing up his physical therapy. I watched them try and get him standing from his chair using rails. He couldn't quite get on his feet, but boy was he trying. And he is always concerned with everyone else. He kept telling the PT workers to be careful, he didn't want anyone getting hurt. After the third try, Grady turned to me and said, "he is getting tired. He has been in here since 8:00 this morning." Wow, 3 hours of physical therapy is enough to make anyone tired!
Once we got back in his room, he started telling me about the morning. They did arm exercises using bands and weights in the morning as a group. Pretty much my Dad and a bunch of little old ladies. But my Dad was helping to motivate them and share his positive attitude and desire to get strong. At some point, the group of ladies said he should begin teaching everyone how to have such a good attitude! He is so pleased with this!
We went outside for a smoke and up walked our family friends the Prestons. We sat outside with them for a while and my Dad talked about his morning and about what lies ahead for him. He really enjoyed the visit. He talked about how nice it was to see them and how highly he thinks of the whole family. It really cheered him up. While we were all out talking, the nurse poked her head out of the door and asked if he wanted lunch. He said, "no...You guys give me so much food here. I am still full from breakfast." And with a smile and an "ok," the nurse when back inside. About 20 minutes later, when we rolled back into his room, he said "roll that tray over to me." I said "what for?" He said "so I can eat my lunch." I told him he was out of luck, he turned it down. But, I said I would go out and get him something. I mentioned a slice of Costco pizza, and if the man could have jumped for joy, he would have. So, I ran down the street and grabbed us a couple slices. He was in pizza heaven.:)
My Aunt showed up, so I took his car to get washed and dropped it off at their house (I drove it to work to keep the battery charged). I went home and got my dogs, and went back to the nursing home. My Mom and Dad were sitting on the patio enjoying a smoke and a little wine. They were happy to see the pooches, and the pooches were happy to be out and about. As we were sitting there, another resident came out and bummed a cigarette off my Mom. My Dad asked her name, and she said "Ruth." He said, "my name is Ed and I am sorry that I didn't remember your name, I just had brain surgery." Then he launches into his speech about how he is getting strong, and he is going to fight, and he is going to succeed because of his attitude. But he adds a new twist...He says "If you ever want to talk about ways to get a good attitude, feel free to stop by my room." If I had been drinking milk, it would have come out my nose!
We got him back in his room, and he was planning on dinner, a shower, and a good night's sleep when I left. I look forward to seeing him again tomorrow. I think he likes our time together as much as I do.
So, my funny for the day...On my way to see him this morning, I went by Starbucks. Now, my good friends know that I like the Green Tea Latte, and in the summer, I like it iced. When it is iced, they serve it in a clear cup, and it is a very odd color...Kind of a dirty mint ice cream green color. So, when we get settled in his room after PT, I set my drink down so I could unfold the chair to sit down. Well, he reaches out and grabs my drink and takes a sip. He looks down at it and says "what is this?" I tell him it is my green tea latte, and that it is my favorite drink. He takes another sip and says, "well, I guess it is ok...I'd imagine it is good for you." Now, I like to pretend I am getting some benefit from the green tea, but I am sure it is minimal...to be truthful, I just like the way it tastes.
Well, he continues to take sips, and eventually, polishes off my drink. He sets the cup down and says "yah, you don't need to hurry to bring me another one of those." I just started laughing and told him not to worry, I didn't really bring that one for him...I brought it for me...:) That reminded me a little of my Grandpa...:) It brought a smile to my face.
No physical therapy on Sundays...So we will have to find ways to tire him out ourselves...:)
Much love.
Once we got back in his room, he started telling me about the morning. They did arm exercises using bands and weights in the morning as a group. Pretty much my Dad and a bunch of little old ladies. But my Dad was helping to motivate them and share his positive attitude and desire to get strong. At some point, the group of ladies said he should begin teaching everyone how to have such a good attitude! He is so pleased with this!
We went outside for a smoke and up walked our family friends the Prestons. We sat outside with them for a while and my Dad talked about his morning and about what lies ahead for him. He really enjoyed the visit. He talked about how nice it was to see them and how highly he thinks of the whole family. It really cheered him up. While we were all out talking, the nurse poked her head out of the door and asked if he wanted lunch. He said, "no...You guys give me so much food here. I am still full from breakfast." And with a smile and an "ok," the nurse when back inside. About 20 minutes later, when we rolled back into his room, he said "roll that tray over to me." I said "what for?" He said "so I can eat my lunch." I told him he was out of luck, he turned it down. But, I said I would go out and get him something. I mentioned a slice of Costco pizza, and if the man could have jumped for joy, he would have. So, I ran down the street and grabbed us a couple slices. He was in pizza heaven.:)
My Aunt showed up, so I took his car to get washed and dropped it off at their house (I drove it to work to keep the battery charged). I went home and got my dogs, and went back to the nursing home. My Mom and Dad were sitting on the patio enjoying a smoke and a little wine. They were happy to see the pooches, and the pooches were happy to be out and about. As we were sitting there, another resident came out and bummed a cigarette off my Mom. My Dad asked her name, and she said "Ruth." He said, "my name is Ed and I am sorry that I didn't remember your name, I just had brain surgery." Then he launches into his speech about how he is getting strong, and he is going to fight, and he is going to succeed because of his attitude. But he adds a new twist...He says "If you ever want to talk about ways to get a good attitude, feel free to stop by my room." If I had been drinking milk, it would have come out my nose!
We got him back in his room, and he was planning on dinner, a shower, and a good night's sleep when I left. I look forward to seeing him again tomorrow. I think he likes our time together as much as I do.
So, my funny for the day...On my way to see him this morning, I went by Starbucks. Now, my good friends know that I like the Green Tea Latte, and in the summer, I like it iced. When it is iced, they serve it in a clear cup, and it is a very odd color...Kind of a dirty mint ice cream green color. So, when we get settled in his room after PT, I set my drink down so I could unfold the chair to sit down. Well, he reaches out and grabs my drink and takes a sip. He looks down at it and says "what is this?" I tell him it is my green tea latte, and that it is my favorite drink. He takes another sip and says, "well, I guess it is ok...I'd imagine it is good for you." Now, I like to pretend I am getting some benefit from the green tea, but I am sure it is minimal...to be truthful, I just like the way it tastes.
Well, he continues to take sips, and eventually, polishes off my drink. He sets the cup down and says "yah, you don't need to hurry to bring me another one of those." I just started laughing and told him not to worry, I didn't really bring that one for him...I brought it for me...:) That reminded me a little of my Grandpa...:) It brought a smile to my face.
No physical therapy on Sundays...So we will have to find ways to tire him out ourselves...:)
Much love.
Friday, June 27, 2008
Mr. Determination
He gets a little better everyday. A little stronger, a little sassier, a little clearer. One of his most important qualities right now is his positivity and drive. If you come to visit him, he will recite his mantra..."I am a fighter...I am going to fight this, and I am going to have quality of life...I may need assistance, but I will work so I am not a burden on my family." And as I may have mentioned before, he LOVES his physical therapy. It makes him feel so accomplished. He always wants to work to get stronger...I mean always! Here is where the lack of patience can come into play.
When we got him to the Dr.'s office yesterday, he came out of the transport van, and we rolled him into the tiny waiting room, and I sat on one side, and my Mom sat down on the other. Not 45 seconds went by, and he started in..."I can't believe I am just sitting here. I am not going to get to do physical therapy today. I am just wasting time here when I could be doing something to get stronger..." I had to get his attention and try and explain that we were early for our appointment time, and we just have to wait. Even as he is sitting in his chair, or laying in bed in the evening, he has to have his "stress bus" to squeeze.
Today, when my Mom came back from lunch, she parked and started to walk in, when she noticed my Dad coming outside by himself. She said he was coming down the slight incline from the front door. Now, this is all fine and well, except after about 12 feet of slight incline, you get to the driveway, which if you turn right, it jumps to about a 45 degree slope. I am not sure that my Dad has the capacity to know how to control the chair, and understand the laws of physics. When I talked to him about the incident, he said my Mom was over reacting...Which is entirely possible (she has been known to do that from time to time), but it is hard to tell who is the better judge of reality anymore.
Either way, we have put in the file that he needs to be accompanied by friends or family if he is to go outside. He is very headstrong, and wants to do it himself (always has), and I don't want to discourage any of this, but we have to try and help him learn to understand better so he doesn't get in over his head.
I am looking forward to spending time with him this weekend. I usually only see him in the evenings because I am working. And on the other hand, my Mom is spending too much time with him. She is just trying to make him happy, but she needs to take some time for herself, and let him get used to not having her fulfill every whim. So, I told her she needs to take some time for herself this weekend when I can be with him, and when he has visitors. So, if you come to visit, and my Mom or I leave you to visit him, it is so that we can get a little time to ourselves.
My Mom and I talked a lot tonight about how this is still all new to all of us. It really has been only 2 weeks today since his surgery. It is hard to get used to this "new normal" as I call it, but we learn a little more each day, just like my Dad.
I did have a talk with my Dad tonight about his attention span. I told him that I know he wants to go home, and that when he does, we will have a nurse to help us and a physical therapist to come help him to be strong, but that he is going to get very bored at home. There is so much activity at the nursing facility...New people, new noises, new stimulation. At home, he will have his big TV with Cox Cable (not that racket DirectTV), but it is just going to be the same 4 people most of the time...He looked at me and said, "yah, I can see that." So, I told him to enjoy all of this activity while it lasts...:)
So, we are so very lucky that my Dad has been able to retain so much of himself with all he has gone through in the past 2 weeks. It almost makes it harder when he does something so out of character, like his impatience, or his crying spells. We are just learning how to get used to handling all of this.
He is starting to really like having new visitors. But, when he has too many, it can overwhelm him a little. So, if you are so inclined, please feel free to come down and see him. If you are interested, send me an email and I can get you the address. Please be aware he has physical therapy every day (except Sunday), and it is usually in the late morning, but the time can vary. Also, he will probably want to go outside for a cigar.
I didn't get to spend as much time tonight with him as I usually do. So, nothing really funny happened. I am sure I will have many more entertaining stories after my day with him tomorrow!:)
Have a wonderful weekend everyone, and lots of love to all.
When we got him to the Dr.'s office yesterday, he came out of the transport van, and we rolled him into the tiny waiting room, and I sat on one side, and my Mom sat down on the other. Not 45 seconds went by, and he started in..."I can't believe I am just sitting here. I am not going to get to do physical therapy today. I am just wasting time here when I could be doing something to get stronger..." I had to get his attention and try and explain that we were early for our appointment time, and we just have to wait. Even as he is sitting in his chair, or laying in bed in the evening, he has to have his "stress bus" to squeeze.
Today, when my Mom came back from lunch, she parked and started to walk in, when she noticed my Dad coming outside by himself. She said he was coming down the slight incline from the front door. Now, this is all fine and well, except after about 12 feet of slight incline, you get to the driveway, which if you turn right, it jumps to about a 45 degree slope. I am not sure that my Dad has the capacity to know how to control the chair, and understand the laws of physics. When I talked to him about the incident, he said my Mom was over reacting...Which is entirely possible (she has been known to do that from time to time), but it is hard to tell who is the better judge of reality anymore.
Either way, we have put in the file that he needs to be accompanied by friends or family if he is to go outside. He is very headstrong, and wants to do it himself (always has), and I don't want to discourage any of this, but we have to try and help him learn to understand better so he doesn't get in over his head.
I am looking forward to spending time with him this weekend. I usually only see him in the evenings because I am working. And on the other hand, my Mom is spending too much time with him. She is just trying to make him happy, but she needs to take some time for herself, and let him get used to not having her fulfill every whim. So, I told her she needs to take some time for herself this weekend when I can be with him, and when he has visitors. So, if you come to visit, and my Mom or I leave you to visit him, it is so that we can get a little time to ourselves.
My Mom and I talked a lot tonight about how this is still all new to all of us. It really has been only 2 weeks today since his surgery. It is hard to get used to this "new normal" as I call it, but we learn a little more each day, just like my Dad.
I did have a talk with my Dad tonight about his attention span. I told him that I know he wants to go home, and that when he does, we will have a nurse to help us and a physical therapist to come help him to be strong, but that he is going to get very bored at home. There is so much activity at the nursing facility...New people, new noises, new stimulation. At home, he will have his big TV with Cox Cable (not that racket DirectTV), but it is just going to be the same 4 people most of the time...He looked at me and said, "yah, I can see that." So, I told him to enjoy all of this activity while it lasts...:)
So, we are so very lucky that my Dad has been able to retain so much of himself with all he has gone through in the past 2 weeks. It almost makes it harder when he does something so out of character, like his impatience, or his crying spells. We are just learning how to get used to handling all of this.
He is starting to really like having new visitors. But, when he has too many, it can overwhelm him a little. So, if you are so inclined, please feel free to come down and see him. If you are interested, send me an email and I can get you the address. Please be aware he has physical therapy every day (except Sunday), and it is usually in the late morning, but the time can vary. Also, he will probably want to go outside for a cigar.
I didn't get to spend as much time tonight with him as I usually do. So, nothing really funny happened. I am sure I will have many more entertaining stories after my day with him tomorrow!:)
Have a wonderful weekend everyone, and lots of love to all.
Thursday, June 26, 2008
How can my Mom's birthday, Father's day, my birthday and brain surgery all happen in the same 3 weeks?
So, big day for all of us today. We went to see Dr. Hardy, and he took out all 40 staples. My Dad's incision looks great. It will be 2 weeks tomorrow since surgery, and it is almost completely healed and almost undetectable.
Dr. Hardy told us that after looking at the PET scan, it confirmed everything they had suspected. There were tumor cells remaining around the edges of the tumor cavity (which he left to error on the side of caution, and not damage any good cells), and there is a small tumor in the left frontal lobe. He said that radiation and chemo are going to be used to fight these remaining cells.
He also told us, that in the hospital, after surgery, my Dad had a series of minor strokes. He said that sometimes the heart and/or carotid artery have issues during recovery from this type of surgery, but that this should not be a problem any longer. He also said that the mood swings and emotions could be caused by both the surgery and the seizure medication (Keppra), and that the hallucinations could actually be small seizures, and he asked that we try to keep an eye on him if he starts to act this way. He said that seizures can be so minor, my Dad may not even know he is having them.
He also said that my Dad's confusion with time can happen with people who have had something this serious happen to them, that they tend not to pay attention to everything going on around them, so they tend to let time get by them.
While Dr. Hardy was removing the staples, my Dad went into his vision and his intent to fight and get strong and to lead as normal a life as possible. Dr. Hardy told him he had the right attitude. We will see Dr. Hardy again when my Dad starts radiation treatments in a few weeks.
As we were waiting for the ambulance to come and get him, my Mom went upstairs to her dentist's office to say hi and let them know we were downstairs (both Dr.s are in the same building). Up until last summer, my parents both went to this office. Then the two dentists split and my Dad went to Dr. Gray, and my Mom stayed with Dr. Williams. But, he came down to say hi and see my Dad and boy did that make my Dad happy.
On top of this, my Dad had several visitors today, and on top of that, it was my birthday. So, I picked up Phil's Bar B Q for dinner, and my Mom, Dad and I set up a card table out in front of the facility, and the three of us sat and had Phil's and then a little cake. It was a sweet, intimate quiet birthday, one that is different than any other I have ever had, but so meaningful and special.
So, the funny for the evening...This one made me laugh so hard my stomach hurt...When we were eating dinner at the card table, I accidentally kind of stepped on my Dad's foot under the table. I apologized to him, and he didn't miss a beat...He says "that's ok..." rolls his head toward me, looks me in the eyes, and says "I walk on them too..."
Love to all.
Dr. Hardy told us that after looking at the PET scan, it confirmed everything they had suspected. There were tumor cells remaining around the edges of the tumor cavity (which he left to error on the side of caution, and not damage any good cells), and there is a small tumor in the left frontal lobe. He said that radiation and chemo are going to be used to fight these remaining cells.
He also told us, that in the hospital, after surgery, my Dad had a series of minor strokes. He said that sometimes the heart and/or carotid artery have issues during recovery from this type of surgery, but that this should not be a problem any longer. He also said that the mood swings and emotions could be caused by both the surgery and the seizure medication (Keppra), and that the hallucinations could actually be small seizures, and he asked that we try to keep an eye on him if he starts to act this way. He said that seizures can be so minor, my Dad may not even know he is having them.
He also said that my Dad's confusion with time can happen with people who have had something this serious happen to them, that they tend not to pay attention to everything going on around them, so they tend to let time get by them.
While Dr. Hardy was removing the staples, my Dad went into his vision and his intent to fight and get strong and to lead as normal a life as possible. Dr. Hardy told him he had the right attitude. We will see Dr. Hardy again when my Dad starts radiation treatments in a few weeks.
As we were waiting for the ambulance to come and get him, my Mom went upstairs to her dentist's office to say hi and let them know we were downstairs (both Dr.s are in the same building). Up until last summer, my parents both went to this office. Then the two dentists split and my Dad went to Dr. Gray, and my Mom stayed with Dr. Williams. But, he came down to say hi and see my Dad and boy did that make my Dad happy.
On top of this, my Dad had several visitors today, and on top of that, it was my birthday. So, I picked up Phil's Bar B Q for dinner, and my Mom, Dad and I set up a card table out in front of the facility, and the three of us sat and had Phil's and then a little cake. It was a sweet, intimate quiet birthday, one that is different than any other I have ever had, but so meaningful and special.
So, the funny for the evening...This one made me laugh so hard my stomach hurt...When we were eating dinner at the card table, I accidentally kind of stepped on my Dad's foot under the table. I apologized to him, and he didn't miss a beat...He says "that's ok..." rolls his head toward me, looks me in the eyes, and says "I walk on them too..."
Love to all.
Wednesday, June 25, 2008
"Listen for my honk..."
Today was a pretty good day. My Dad was thrilled with his Physical Therapy session, and got to have a nice visit with his friend Jack. Poor Jack couldn't find his cigars, which could have easily turned into a debacle, but I think my Dad was so happy to lay his eyes on Jack that for that time, his cigars didn't really matter.
We go see Dr. Hardy tomorrow late morning. My Dad told me he was looking forward to talking to the Dr., and he and I went over a list of questions/items I have been writing down based on things I have noticed with my Dad.
He has this funny story he has kind of been stuck on for the past few days. He swears that 2 nights ago, he drove his hospital bed down Fletcher Parkway at 55 miles an hour...It is so funny, because we will be having a normal, perfectly understandable conversation, and then he will whip out his "bed" story. He even told us that each night, we should listen for him to honk as he drives his bed by our houses...Kind of a good visual if you ask me. I told him that there is no way those tiny casters could go 55...But instead of agreeing that a hospital bed going down the road sounded a little silly, he looked right at me and said "Ok, maybe I will only go 35 miles an hour then."
My other funny happened tonight. I am sure all of you reading know or have met my Mom. But if by chance you have not, my Mom is an impeccably tidy woman. I don't mean her personal self (although this is impeccable too), but she does not like a mess...Crumbs, dribbles and stains are her enemy. And this has imprinted on my Dad over many years. So, needless to say, my father is covered in an array of towels, paper towels and napkins anytime the poor man tries to eat something. So, my Mom was feeding him his frozen yogurt tonight, (because he was in bed and she wasn't about to let him spill), and he kept trying to talk to me (the man is so chatty). My Mom kept telling him to "just eat" because it was melting (more risk of spillage). After about 3 chastisings from my Mom, my Dad swallowed, looked right at her and said "boy, I sure can't wait until I don't have to do everything for you..." He just cracked himself up.
Wish us luck at Dr. Hardy's tomorrow. I will let you know how it goes.
Love to all.
We go see Dr. Hardy tomorrow late morning. My Dad told me he was looking forward to talking to the Dr., and he and I went over a list of questions/items I have been writing down based on things I have noticed with my Dad.
He has this funny story he has kind of been stuck on for the past few days. He swears that 2 nights ago, he drove his hospital bed down Fletcher Parkway at 55 miles an hour...It is so funny, because we will be having a normal, perfectly understandable conversation, and then he will whip out his "bed" story. He even told us that each night, we should listen for him to honk as he drives his bed by our houses...Kind of a good visual if you ask me. I told him that there is no way those tiny casters could go 55...But instead of agreeing that a hospital bed going down the road sounded a little silly, he looked right at me and said "Ok, maybe I will only go 35 miles an hour then."
My other funny happened tonight. I am sure all of you reading know or have met my Mom. But if by chance you have not, my Mom is an impeccably tidy woman. I don't mean her personal self (although this is impeccable too), but she does not like a mess...Crumbs, dribbles and stains are her enemy. And this has imprinted on my Dad over many years. So, needless to say, my father is covered in an array of towels, paper towels and napkins anytime the poor man tries to eat something. So, my Mom was feeding him his frozen yogurt tonight, (because he was in bed and she wasn't about to let him spill), and he kept trying to talk to me (the man is so chatty). My Mom kept telling him to "just eat" because it was melting (more risk of spillage). After about 3 chastisings from my Mom, my Dad swallowed, looked right at her and said "boy, I sure can't wait until I don't have to do everything for you..." He just cracked himself up.
Wish us luck at Dr. Hardy's tomorrow. I will let you know how it goes.
Love to all.
Tuesday, June 24, 2008
"See those red lights? Those are the lights from the cars going North..."
So, yes, tonight the hallucination flavor of the day was "lights going North..." He kept seeing lights on the walls. He does have a window, and there is a small road down where he may catch a tail light or two...But, the blinds were closed each and every time he saw them tonight.
He had a mood swing of a day...And some dumb bunny at the nursing home gave the man a phone. We know he at least called my Aunt, and he claims to have called several other people...So, if any of you got a crank call from Scotch/Ed today, I am sorry...:)
By the time I got there in the evening, he was a teddy bear. He was cursing out DirectTV, saying they were "really a racket," so, I called and upped his package to include the sports package, and just when I got a game on for him, he looked at me and said "Stop. That's enough. I am done for tonight." Sheesh...That DirectTV will be the end of me yet...:) At least he will have sports tomorrow if he wants it.
He had a pretty good Physical Therapy session today. They got him standing a little bit using some rails for him to lean on. He felt so accomplished...My Mom said he was wheeled down the hall after his session with his arms in the air in victory. What a great visual!
When he gets something in his head, there is little you can do to change the subject. This combined with his struggle with time, he is kind of like the 8-year-old in the back of the car on a road trip..."Are we there yet? How about now? Now?" The other day when I was there, he was saying that his hands hurt (he has arthritis), and that he felt like he wanted to work them out. He wanted a stress ball that he could grip. He had my poor Aunt wheeling him all over to try and find one in the Physical Therapy room. When I got there, he kept saying that he knew he had some at home, and that it was just ridiculous that they didn't have them right there at Arbor Hills. He was so insistent, I got in the car, and ran to my parents house, and my Mom and I were able to locate one stress ball. So, back I go with it.
When I get back, I hand it to him, and he gloats that he was right, he knew he had it at home...Then he decides that he is so concerned about it, and he doesn't want to put it down, because it will roll away and he will never see it again...It's round, ya see.
At work we have a contract with a company to provide bus transportation from Anaheim to San Diego. We give them a little squishy bus-shaped stress ball (well, stress bus) with our logo as a token of our appreciation when they are on the way down. Well, I procured a couple of said buses, and brought them into Dad. When he finally realized what they were, he said "Oh good, they won't roll away...Even though they have wheels..." He just cracks me up...:)
Love to all.
He had a mood swing of a day...And some dumb bunny at the nursing home gave the man a phone. We know he at least called my Aunt, and he claims to have called several other people...So, if any of you got a crank call from Scotch/Ed today, I am sorry...:)
By the time I got there in the evening, he was a teddy bear. He was cursing out DirectTV, saying they were "really a racket," so, I called and upped his package to include the sports package, and just when I got a game on for him, he looked at me and said "Stop. That's enough. I am done for tonight." Sheesh...That DirectTV will be the end of me yet...:) At least he will have sports tomorrow if he wants it.
He had a pretty good Physical Therapy session today. They got him standing a little bit using some rails for him to lean on. He felt so accomplished...My Mom said he was wheeled down the hall after his session with his arms in the air in victory. What a great visual!
When he gets something in his head, there is little you can do to change the subject. This combined with his struggle with time, he is kind of like the 8-year-old in the back of the car on a road trip..."Are we there yet? How about now? Now?" The other day when I was there, he was saying that his hands hurt (he has arthritis), and that he felt like he wanted to work them out. He wanted a stress ball that he could grip. He had my poor Aunt wheeling him all over to try and find one in the Physical Therapy room. When I got there, he kept saying that he knew he had some at home, and that it was just ridiculous that they didn't have them right there at Arbor Hills. He was so insistent, I got in the car, and ran to my parents house, and my Mom and I were able to locate one stress ball. So, back I go with it.
When I get back, I hand it to him, and he gloats that he was right, he knew he had it at home...Then he decides that he is so concerned about it, and he doesn't want to put it down, because it will roll away and he will never see it again...It's round, ya see.
At work we have a contract with a company to provide bus transportation from Anaheim to San Diego. We give them a little squishy bus-shaped stress ball (well, stress bus) with our logo as a token of our appreciation when they are on the way down. Well, I procured a couple of said buses, and brought them into Dad. When he finally realized what they were, he said "Oh good, they won't roll away...Even though they have wheels..." He just cracks me up...:)
Love to all.
Monday, June 23, 2008
"Ok...So what's next on my schedule?"
So, my Dad has become so interested in "what's next." He is having some trouble keeping track of the days and time...It is helping that the longer he is at Arbor Hills, the more stability he is getting. I think he maybe getting bored of stability...
He is so funny...Whenever we get him loaded in or out of the wheelchair to take him out for a smoke, or over the PT, he always says "Ok, so what's next on my schedule?" Then we tell him, and at the finally of the next change of scenery, he asks "Ok, so what's next on my schedule?" It is kind of like taking an 8-year old child on a car trip..."Are we there yet?"
So, today he was pretty emotional. He is far more emotional than he was prior to surgery...Well, more emotional might not be the right term...Less in control of his emotions is more like it. He was always so even-keel. He would get frustrated, or mad, or choked up when I told him I loved him, but it was always very controlled, and only a few times in my life would there ever be actual tears, or a "ugh" of frustration, or would he raise his voice in anger.
Now, he tends to cry off and on, and when he gets mad, look out. I am sure some of this is due to them digging around in his head, but some of it has to be from sheer frustration, and the feeling of having your independence taken away from you suddenly. He has always been so independent...He always did it himself, his way. He was very slow to break down and ask for help (a quality I am cursed with as well...Thanks Dad!). So, for him to have to work around other people's schedule, and just not step out for a cig, or run to Costco, or go to lunch at Hooter's with the guys is really taking it's toll on him.
Still having some hallucinations. Not as many ducks or spiders, but my favorite new one is he thinks he sees my dog, Tucker all the time. Now Tucker is a Jack Russell Terrier who weighs about 20 lbs...The Tucker that "comes sniffing around his room at night" is about 4 feet tall. Geez, I have my hands full with him being little, I don't even want to think about what he would be like if he was that big! I just told him Tucker was worried about him, and he is coming to visit him in dreamland at night. He thought that was pretty funny. The only thing funnier, was when I asked him if it was just Tucker, he said "No, I think Macrame' was here too..." Then he caught himself and looked at me funny, and said "Where did I get Macrame'?" Yah, my other dog's name is Newman...We just laughed and laughed.
Looking forward to Thursday. I have a whole list of questions to ask the Dr. about his behavior since the surgery.
Love to all.:)
He is so funny...Whenever we get him loaded in or out of the wheelchair to take him out for a smoke, or over the PT, he always says "Ok, so what's next on my schedule?" Then we tell him, and at the finally of the next change of scenery, he asks "Ok, so what's next on my schedule?" It is kind of like taking an 8-year old child on a car trip..."Are we there yet?"
So, today he was pretty emotional. He is far more emotional than he was prior to surgery...Well, more emotional might not be the right term...Less in control of his emotions is more like it. He was always so even-keel. He would get frustrated, or mad, or choked up when I told him I loved him, but it was always very controlled, and only a few times in my life would there ever be actual tears, or a "ugh" of frustration, or would he raise his voice in anger.
Now, he tends to cry off and on, and when he gets mad, look out. I am sure some of this is due to them digging around in his head, but some of it has to be from sheer frustration, and the feeling of having your independence taken away from you suddenly. He has always been so independent...He always did it himself, his way. He was very slow to break down and ask for help (a quality I am cursed with as well...Thanks Dad!). So, for him to have to work around other people's schedule, and just not step out for a cig, or run to Costco, or go to lunch at Hooter's with the guys is really taking it's toll on him.
Still having some hallucinations. Not as many ducks or spiders, but my favorite new one is he thinks he sees my dog, Tucker all the time. Now Tucker is a Jack Russell Terrier who weighs about 20 lbs...The Tucker that "comes sniffing around his room at night" is about 4 feet tall. Geez, I have my hands full with him being little, I don't even want to think about what he would be like if he was that big! I just told him Tucker was worried about him, and he is coming to visit him in dreamland at night. He thought that was pretty funny. The only thing funnier, was when I asked him if it was just Tucker, he said "No, I think Macrame' was here too..." Then he caught himself and looked at me funny, and said "Where did I get Macrame'?" Yah, my other dog's name is Newman...We just laughed and laughed.
Looking forward to Thursday. I have a whole list of questions to ask the Dr. about his behavior since the surgery.
Love to all.:)
Sunday, June 22, 2008
Moving right along...
Whew! Another hot one out here in the East county. It sort of came back to bite my Dad this morning when the AC in the nursing facility was cranking early in the morning to keep the East side cool in the morning when the sun was coming up. He ended up with 4 blankets on him to keep him warm.
Once he got dressed and up, he was just fine.
Direct TV was installed this morning...Not soon enough. However, tonight when we were looking for something to watch, he wanted to watch the Padres...Direct TV does not get Channel 4...And then as I kept running shows by him, he kept saying "no, how about something else...?" I couldn't win...;)
Went to the Fair today for a couple hours with friends...Boy, I didn't realize how tired I was until walking around in the sun...I went back to see my Dad on my way home, and we finished is dinner (baked Mac and cheese with breadcrumb topping and peas...I snuck a bite...It was good!), and only ate a little of the jello dessert to save room for Golden Spoon! If you are not familiar with Golden Spoon, it is a frozen yogurt chain that has great yogurt. My Dad just loves it, and it is right next to my house, in the center on the Northeast corner of the intersection of Baltimore Drive and Lake Murray Blvd. in La Mesa. I know there are a few others around, but it is really yummy!
So, this week, Dad has Physical Therapy every day, and then we go see Dr. Hardy on Thursday. My Dad is really looking forward to getting the net thing off his head...It is a stretchy, net tube with a hole in it for his face. It helps to hold the bandages in place without having to use a lot of tape. It goes under his chin, and the best part is that there is a lot more room at the top, so he has this little tube that sticks straight up on the top of his head. It reminds me of a cartoon from my childhood called the "Snorks," which were these little underwater creatures with a snorkel like thing on the top of their head.
I took a photo of him the other day so he could see what it looked like, and when I showed him the camera, he laughed, and looked directly at me and said in all seriousness..."I don't want this on the Internet." He is so funny about things sometimes.
Much love.
Once he got dressed and up, he was just fine.
Direct TV was installed this morning...Not soon enough. However, tonight when we were looking for something to watch, he wanted to watch the Padres...Direct TV does not get Channel 4...And then as I kept running shows by him, he kept saying "no, how about something else...?" I couldn't win...;)
Went to the Fair today for a couple hours with friends...Boy, I didn't realize how tired I was until walking around in the sun...I went back to see my Dad on my way home, and we finished is dinner (baked Mac and cheese with breadcrumb topping and peas...I snuck a bite...It was good!), and only ate a little of the jello dessert to save room for Golden Spoon! If you are not familiar with Golden Spoon, it is a frozen yogurt chain that has great yogurt. My Dad just loves it, and it is right next to my house, in the center on the Northeast corner of the intersection of Baltimore Drive and Lake Murray Blvd. in La Mesa. I know there are a few others around, but it is really yummy!
So, this week, Dad has Physical Therapy every day, and then we go see Dr. Hardy on Thursday. My Dad is really looking forward to getting the net thing off his head...It is a stretchy, net tube with a hole in it for his face. It helps to hold the bandages in place without having to use a lot of tape. It goes under his chin, and the best part is that there is a lot more room at the top, so he has this little tube that sticks straight up on the top of his head. It reminds me of a cartoon from my childhood called the "Snorks," which were these little underwater creatures with a snorkel like thing on the top of their head.
I took a photo of him the other day so he could see what it looked like, and when I showed him the camera, he laughed, and looked directly at me and said in all seriousness..."I don't want this on the Internet." He is so funny about things sometimes.
Much love.
Saturday, June 21, 2008
The little pleasures in life...
Whew...Very hot today...I was almost happy to hang out in the nursing home today, because they keep it nice and cool.:)
The morning started rough...The whole world was crumbling around my Dad because he could not get any channels on TV except to watch "My Friend Flicka in Spanish!" Boy, did that make him mad. So, needless to say, I was on the phone ordering Direct TV as soon as my Mom called me this morning...It gets installed tomorrow morning.
We went down and spent the morning with him. When the Physical Therapy guys came to get him for his session around Noon, my Mom and I decided to grab some lunch. We passed my Dad's friend Mark, who waited for him to get done with PT, and along with my Uncle, sat outside and watched my Dad relish in the Marlboro (well 3 Marlboros) that my Uncle lit for him...My Uncle said that his attitude went from caustic to teddy bear in about 1.2 cigarettes...;)
When we went back a little later, he was much calmer, and really had a gung-ho spirit about him. That nicotine is really something...:) Just kidding...I think it is a combination of many things, but that familarity helped to ground him a little.
He had a great night...I went and got him a Schlotsky's sandwich and chips, on request, and he got to go out for a smoke on the patio with my Aunt and Uncle, Mom and I...A perfect end to a beautiful, summer evening. He was looking forward to a good night's sleep.
A funny story before I finish tonight...When my Dad was in the emergency room a week and a half ago, he had not eaten at all that morning. He was so hungry. The ER nurse said I could go grab him something to eat. So, I ask him what he wants. He tells me that he wants "a good sandwich from that place." I asked him if he could be more specific...And he said " you know...that good place...Over there..." And he is pointing to the corner of the little room we are in. So, I start quizzing him to try and find out what he means. "You mean Submarina?" He says "No, I said I wanted a GOOD sandwich..." So, after about 2 minutes of this going back and forth, he gets frustrated with me, and decides he is going to ask the ER nurse what the name of the place is...This would be fine, if the ER nurse was nearby...She was at the nurses station, which was about 20 feet away, and he could still see her. Well, he looks at the dry erase board where the previous shift had written their names..."RN: Monika and TECH: Rose." He begins bellowing "ROSE!" over and over again. I am telling him to stop shouting, and to be quiet...Well, this was really bothering him, along with the fact that the ER nurse was unresponsive. After about 7 or 8 shouts of "ROSE!" I get his attention and try and work out what he is talking about, and tell him that I don't think her name is Rose.. I ask him where it is...He says "the Mall..." I ask him which end...He says "by Montgomery Wards..." I say "you mean Walmart?" He says "yes, on the corner..." I say "you mean Schlotsky's??" He says "Yes. I love that place." I tell him that I had no idea he even knew what Schlotsky's was...About this time, the ER nurse walks in, and I take a look at her name tag, turn to my Dad and say..."Dad, this is Susie..." No wonder she didn't answer to Rose...:)
Have a wonderful weekend, and love to all.
The morning started rough...The whole world was crumbling around my Dad because he could not get any channels on TV except to watch "My Friend Flicka in Spanish!" Boy, did that make him mad. So, needless to say, I was on the phone ordering Direct TV as soon as my Mom called me this morning...It gets installed tomorrow morning.
We went down and spent the morning with him. When the Physical Therapy guys came to get him for his session around Noon, my Mom and I decided to grab some lunch. We passed my Dad's friend Mark, who waited for him to get done with PT, and along with my Uncle, sat outside and watched my Dad relish in the Marlboro (well 3 Marlboros) that my Uncle lit for him...My Uncle said that his attitude went from caustic to teddy bear in about 1.2 cigarettes...;)
When we went back a little later, he was much calmer, and really had a gung-ho spirit about him. That nicotine is really something...:) Just kidding...I think it is a combination of many things, but that familarity helped to ground him a little.
He had a great night...I went and got him a Schlotsky's sandwich and chips, on request, and he got to go out for a smoke on the patio with my Aunt and Uncle, Mom and I...A perfect end to a beautiful, summer evening. He was looking forward to a good night's sleep.
A funny story before I finish tonight...When my Dad was in the emergency room a week and a half ago, he had not eaten at all that morning. He was so hungry. The ER nurse said I could go grab him something to eat. So, I ask him what he wants. He tells me that he wants "a good sandwich from that place." I asked him if he could be more specific...And he said " you know...that good place...Over there..." And he is pointing to the corner of the little room we are in. So, I start quizzing him to try and find out what he means. "You mean Submarina?" He says "No, I said I wanted a GOOD sandwich..." So, after about 2 minutes of this going back and forth, he gets frustrated with me, and decides he is going to ask the ER nurse what the name of the place is...This would be fine, if the ER nurse was nearby...She was at the nurses station, which was about 20 feet away, and he could still see her. Well, he looks at the dry erase board where the previous shift had written their names..."RN: Monika and TECH: Rose." He begins bellowing "ROSE!" over and over again. I am telling him to stop shouting, and to be quiet...Well, this was really bothering him, along with the fact that the ER nurse was unresponsive. After about 7 or 8 shouts of "ROSE!" I get his attention and try and work out what he is talking about, and tell him that I don't think her name is Rose.. I ask him where it is...He says "the Mall..." I ask him which end...He says "by Montgomery Wards..." I say "you mean Walmart?" He says "yes, on the corner..." I say "you mean Schlotsky's??" He says "Yes. I love that place." I tell him that I had no idea he even knew what Schlotsky's was...About this time, the ER nurse walks in, and I take a look at her name tag, turn to my Dad and say..."Dad, this is Susie..." No wonder she didn't answer to Rose...:)
Have a wonderful weekend, and love to all.
Friday, June 20, 2008
This has been the longest and shortest seven days EVER!
So, here we are at one week post-surgery. I haven't seen him yet today, and right now he is at his PET scan. I have been trying to get to work a little each day to make sure nothing falls behind, and to try and get some normalcy and familiarity...I am a lot like my Dad when it comes to treating work like a hobby. I also am a lot like my Dad in surrounding myself with strong, caring, giving friends and co-workers, without whom I would not be able to stand...Thank you to all of the wonderful people my parents and I have had the fortune to meet and cling to during this difficult time.
So, I have been communicating mostly the things that are wrong with my Dad...I would be remiss if I didn't take a minute to discuss what is right. Although it is hard for me to see sometimes, he/we have so many blessings. In discussion with the Dr.'s, there were many possible outcomes with brain surgery...Coma, brain damage, loss of sight, hearing, speech, memory and even death. My Dad still has all of his senses, and boy let me tell you, there is absolutely NOTHING wrong with my Dad's hearing! I sometimes try to whisper across him to my Aunt or Mom, and he catches every word of it! He also still has great memory, knows who we all are, still has a sense of humor, and still has his stubborn streak.
This will not be an easy road ahead, but his stubborn streak and independent nature will be what keeps him going. And with the help of Physical and Occupational therapy, we should be able to help him get back some of the strength and hopefully some of the processing that he is struggling with.
One of my good friends at work says that sometimes this blog is a little hard to read...Mostly because he wants to go hug someone he loves. I hope it inspires everyone to do just that. I am unbelievably lucky to have such amazing parents and family, and that we are so close. There has never been any doubt in my mind how much my parents love me, and I hope that goes both ways....I think it does. But, I know that there is always more that can be said or done, everyday. I am lucky that I can still hug and kiss him, and let him know that he is my hero, and I love him with all my heart. Some are not so lucky, and I have seen that hurt from the outside, and it is unbearable to see, let alone experience firsthand.
So, just take a moment to hug your friends and family, and let them know how you feel. Never take anything for granted. My Dad never did...That is just who he is.
Wow, sorry so deep for a Friday. But it is an important message that I know my Dad would be proud to inspire.
Much love and good weekend wishes to all.
So, I have been communicating mostly the things that are wrong with my Dad...I would be remiss if I didn't take a minute to discuss what is right. Although it is hard for me to see sometimes, he/we have so many blessings. In discussion with the Dr.'s, there were many possible outcomes with brain surgery...Coma, brain damage, loss of sight, hearing, speech, memory and even death. My Dad still has all of his senses, and boy let me tell you, there is absolutely NOTHING wrong with my Dad's hearing! I sometimes try to whisper across him to my Aunt or Mom, and he catches every word of it! He also still has great memory, knows who we all are, still has a sense of humor, and still has his stubborn streak.
This will not be an easy road ahead, but his stubborn streak and independent nature will be what keeps him going. And with the help of Physical and Occupational therapy, we should be able to help him get back some of the strength and hopefully some of the processing that he is struggling with.
One of my good friends at work says that sometimes this blog is a little hard to read...Mostly because he wants to go hug someone he loves. I hope it inspires everyone to do just that. I am unbelievably lucky to have such amazing parents and family, and that we are so close. There has never been any doubt in my mind how much my parents love me, and I hope that goes both ways....I think it does. But, I know that there is always more that can be said or done, everyday. I am lucky that I can still hug and kiss him, and let him know that he is my hero, and I love him with all my heart. Some are not so lucky, and I have seen that hurt from the outside, and it is unbearable to see, let alone experience firsthand.
So, just take a moment to hug your friends and family, and let them know how you feel. Never take anything for granted. My Dad never did...That is just who he is.
Wow, sorry so deep for a Friday. But it is an important message that I know my Dad would be proud to inspire.
Much love and good weekend wishes to all.
Thursday, June 19, 2008
Don't you see the ducks?
I know my last few posts have been a little "Debbie Downer..." I think it is time for a short update, and then a few good "Scotch" stories to cheer us all up...:)
Today was ok. The Physical therapy guys got him into a wheel chair, and he and my Mom sat together for 2 hours. He was agitated again tonight, but they gave him is sleeping pill, and although he would not go to sleep while I was there, he was pretty close...So, let's hope he sleeps tonight. Tomorrow is a big day again...He goes in for his PET scan tomorrow afternoon.
So, when he is ready to have more visitors, he will tell you this story, and you will enjoy it because it is so fun to watch him tell it...He pauses at all the right moments, and his facial expressions and inflection are priceless. But it is a funny story (that I have heard about 25 times so far) and I laugh every time I hear him tell it.
So, I guess when the EMT's came to take him to the hospital last week, in the ambulance, they were telling him that aside from La Jolla, La Mesa had the prettiest nurses. Lots of pretty nurses to help him out...When they rolled him into the ER, they told him that unfortunately, he would have "Bruce." And boy did he think that was not very nice! I am not doing this justice, so you will have to have him tell you.
The hallucinations are ongoing (I know this doesn't start like a good story, but bear with me). He is starting to realize that maybe they are not real. We are calling the Dr.'s office tomorrow to see if this is common with brain surgery, or one of his medications...But, here is a cute story about one of his hallucinations.
When my Mom and Dad sat together today for a few hours, all he could talk about were "the ducks in the hallway." Well, there were no ducks in the hallway (that my Mom could see), but she decided to play along and said "yah, aren't they cute?" He went on to tell her that there was "a lot of them" and "they were molting," and that there were feathers everywhere! The two of them sat there and talked about the ducks for over an hour. When he was repeating the story to my Aunt and Uncle, he went on to say that there was 525,000 feathers...And my Uncle said "wow, there must have been a lot of ducks to make that many feathers," and my Dad replied "yah, there were." So, I asked him if he was going to be using a down comforter with all of those feathers, and he looked over at me and said "there were certainly enough feathers!"
Love to all.
Today was ok. The Physical therapy guys got him into a wheel chair, and he and my Mom sat together for 2 hours. He was agitated again tonight, but they gave him is sleeping pill, and although he would not go to sleep while I was there, he was pretty close...So, let's hope he sleeps tonight. Tomorrow is a big day again...He goes in for his PET scan tomorrow afternoon.
So, when he is ready to have more visitors, he will tell you this story, and you will enjoy it because it is so fun to watch him tell it...He pauses at all the right moments, and his facial expressions and inflection are priceless. But it is a funny story (that I have heard about 25 times so far) and I laugh every time I hear him tell it.
So, I guess when the EMT's came to take him to the hospital last week, in the ambulance, they were telling him that aside from La Jolla, La Mesa had the prettiest nurses. Lots of pretty nurses to help him out...When they rolled him into the ER, they told him that unfortunately, he would have "Bruce." And boy did he think that was not very nice! I am not doing this justice, so you will have to have him tell you.
The hallucinations are ongoing (I know this doesn't start like a good story, but bear with me). He is starting to realize that maybe they are not real. We are calling the Dr.'s office tomorrow to see if this is common with brain surgery, or one of his medications...But, here is a cute story about one of his hallucinations.
When my Mom and Dad sat together today for a few hours, all he could talk about were "the ducks in the hallway." Well, there were no ducks in the hallway (that my Mom could see), but she decided to play along and said "yah, aren't they cute?" He went on to tell her that there was "a lot of them" and "they were molting," and that there were feathers everywhere! The two of them sat there and talked about the ducks for over an hour. When he was repeating the story to my Aunt and Uncle, he went on to say that there was 525,000 feathers...And my Uncle said "wow, there must have been a lot of ducks to make that many feathers," and my Dad replied "yah, there were." So, I asked him if he was going to be using a down comforter with all of those feathers, and he looked over at me and said "there were certainly enough feathers!"
Love to all.
Tough...
So, last night was not very good. When we left him at around 10:30, they had still not gotten him his sleeping pill. Because he came in so late in the day, the Dr. there did not have a chance to approve all of the medication for my Dad. So they had to request it to be brought over, which was taking a while.
He was so tired yesterday. Much more lucid, and aware. This mixed in with hallucinations was not a good combination. He would be having a completely normal conversation with me, and then point at the ceiling and say "see all those white spiders up there? They are from the Phillipines..." I am not sure what is causing that...Whether it is medication, or coming down off a medication, or just a side effect of everything he is going through.
We left at 10:00 and he fell asleep. When my Mom called the nurses desk to check on him, she said that he was sleeping, but didn't get his pill yet. We told them to not wake him to give him his pill...Made sense at the time, but when he did wake up around 2:00, he was hopping mad that he had not had his meds yet. My Mom ended up going down to try and calm him down, and was there most of the night.
He is still so confused and frustrated. He called me last night at 3:00 am because he wanted me to come get him out. My Mom said she had tried to calm him down for over an hour, but he wanted to talk to me. I didn't give him the answers he wanted to hear either. At this point, he feels like we are letting him down, and that is really tough on my Mom and I. We just have to keep in mind that it is not really him talking and that we are doing what is best for all of us.
Really hard day...More for us than for him, but to have him feel deserted just breaks my heart into a million pieces.
Hoping he gets some attention today from the Physical and Occupational therepists. It will hopefully give him something else to think about and make him tired enough to sleep tonight...WITH his sleeping pill.
He was so tired yesterday. Much more lucid, and aware. This mixed in with hallucinations was not a good combination. He would be having a completely normal conversation with me, and then point at the ceiling and say "see all those white spiders up there? They are from the Phillipines..." I am not sure what is causing that...Whether it is medication, or coming down off a medication, or just a side effect of everything he is going through.
We left at 10:00 and he fell asleep. When my Mom called the nurses desk to check on him, she said that he was sleeping, but didn't get his pill yet. We told them to not wake him to give him his pill...Made sense at the time, but when he did wake up around 2:00, he was hopping mad that he had not had his meds yet. My Mom ended up going down to try and calm him down, and was there most of the night.
He is still so confused and frustrated. He called me last night at 3:00 am because he wanted me to come get him out. My Mom said she had tried to calm him down for over an hour, but he wanted to talk to me. I didn't give him the answers he wanted to hear either. At this point, he feels like we are letting him down, and that is really tough on my Mom and I. We just have to keep in mind that it is not really him talking and that we are doing what is best for all of us.
Really hard day...More for us than for him, but to have him feel deserted just breaks my heart into a million pieces.
Hoping he gets some attention today from the Physical and Occupational therepists. It will hopefully give him something else to think about and make him tired enough to sleep tonight...WITH his sleeping pill.
Wednesday, June 18, 2008
On the move...
Today was a big day. We worked with some of the wonderful case workers at Grossmont, and my Dad was discharged to a skilled nursing facility late this afternoon. He is sharing a room with a guy who's TV is a little loud, and to top it all off, he doesn't get a TV until tomorrow, when the maintenance guy comes in...It is going to be a long night.
Once again, all day long, he told me that he was going to give the Dr. hell when he came in...And when Dr. Hardy came by, he was calm, asked appropriate questions, and was very positive about the fight ahead.
We spoke with Dr. Zu, the medial oncologist, and Dr. Uhl, the radiation oncologist. My Dad is scheduled for a PET scan on Friday, and then will see Dr. Hardy in a week to remove the 40 staples in his head, then Dr.'s Zu and Uhl in a few weeks to begin radiation and chemo. The chemo is in pill form that he will take every night. The Dr.'s tell us it is not as bad as chemo used to be. It may make him tired and maybe a little nauseous, but some people have little to no effect. He will have to take it for up to 6 months.
The radiation will be 5 days a week for 6 weeks, and should start in 2-3 weeks.
He is very emotional today. He is really beginning to understand what is going on, and he is feeling bad about laying all of this on everyone...That is more like my Dad...It is almost harder this way, because it is more him, and it breaks my heart for him to feel bad about us. He reassures me he is going to fight like hell, no matter what.
Thank you for the cards, they are very nice. Please don't send any flowers now, as there is no place to put them in his room right now. And, probably no visitors until he is settled. I will keep you posted.
If you feel you must do something, give blood. I don't know if everyone knows how much my Dad has always done to help others. He has always lived his life being thankful for what he had, and he wanted to help others in any way possible. One way he knew he could make a difference is by giving blood. All my life, he gave blood every 8 weeks like clockwork. And then when he discovered that you could give plasma and packed cells every 3 weeks, he started doing that. Every third Tuesday, he would go to the blood bank, and sit there for 3 hours while they filtered the blood from his body and put it back in. My Dad has donated over 200 pints of blood in his lifetime.
He was very upset he would not be able to do that anymore. The night before his surgery, he told me how much he loved to give blood because "it helped all the kids that needed it." He also said he was "proud to have been able to do it, not boastful proud, but proud to help...More people should do it."
So you know how the San Diego Blood Bank is always looking for everyone to donate "one more time?" We are all going to have to donate "one more time" (or "one time" for most of us) to help make up for the hole that is being left by my Dad. So, if you can, give blood. If you can't for whatever reason, encourage someone else to do it.
Much love.
Once again, all day long, he told me that he was going to give the Dr. hell when he came in...And when Dr. Hardy came by, he was calm, asked appropriate questions, and was very positive about the fight ahead.
We spoke with Dr. Zu, the medial oncologist, and Dr. Uhl, the radiation oncologist. My Dad is scheduled for a PET scan on Friday, and then will see Dr. Hardy in a week to remove the 40 staples in his head, then Dr.'s Zu and Uhl in a few weeks to begin radiation and chemo. The chemo is in pill form that he will take every night. The Dr.'s tell us it is not as bad as chemo used to be. It may make him tired and maybe a little nauseous, but some people have little to no effect. He will have to take it for up to 6 months.
The radiation will be 5 days a week for 6 weeks, and should start in 2-3 weeks.
He is very emotional today. He is really beginning to understand what is going on, and he is feeling bad about laying all of this on everyone...That is more like my Dad...It is almost harder this way, because it is more him, and it breaks my heart for him to feel bad about us. He reassures me he is going to fight like hell, no matter what.
Thank you for the cards, they are very nice. Please don't send any flowers now, as there is no place to put them in his room right now. And, probably no visitors until he is settled. I will keep you posted.
If you feel you must do something, give blood. I don't know if everyone knows how much my Dad has always done to help others. He has always lived his life being thankful for what he had, and he wanted to help others in any way possible. One way he knew he could make a difference is by giving blood. All my life, he gave blood every 8 weeks like clockwork. And then when he discovered that you could give plasma and packed cells every 3 weeks, he started doing that. Every third Tuesday, he would go to the blood bank, and sit there for 3 hours while they filtered the blood from his body and put it back in. My Dad has donated over 200 pints of blood in his lifetime.
He was very upset he would not be able to do that anymore. The night before his surgery, he told me how much he loved to give blood because "it helped all the kids that needed it." He also said he was "proud to have been able to do it, not boastful proud, but proud to help...More people should do it."
So you know how the San Diego Blood Bank is always looking for everyone to donate "one more time?" We are all going to have to donate "one more time" (or "one time" for most of us) to help make up for the hole that is being left by my Dad. So, if you can, give blood. If you can't for whatever reason, encourage someone else to do it.
Much love.
Tuesday, June 17, 2008
Baby steps...
So, a little better every day. But I think really only my Mom, Aunt and I can see it because he is still full of rage and frustration, and those who came to visit today got an earful...My poor uncle got read the riot act for not calling in the reinforcements...You know, the police, FBI and the like, to address the ill treatment he is receiving. He is feeling very trapped (because he is...in his mind), and deprived (because he is, from his normal routine), and out of control (again, because he is).
He was giving them such a hard time this morning, they called me to come in. So, I went down around 9:00, and he was very agitated. Wanting a cigar so badly, and wanting to get up. He also was feeling like he was not being treated well (contrary to everything we have seen), and he wants to speak to the high ups. He went on and on about how he was going to give the doctor a piece of his mind...Oh geez, that was a really bad choice of words wasn't it...
When Dr. Hardy arrived, my Dad had been with the physical therapists. They tried to help him get up, but he couldn't explain well enough for them to get him up. So, after working with him in misery for about 15 minutes, they got him into a wheelchair so he could sit for awhile. Just as they came back to get him into bed, Dr. Hardy walked in. I am preparing for this tongue lashing he is ready to unleash...Dr. Hardy starts talking and my Dad is the most attentive and polite, and making comments like "well you can't ask for much better than that" in response to Dr. Hardy saying they got about 90% of the tumor out.
So, Dr. Hardy asks him how he is...And I think, "oh boy, here it comes..." My Dad looks at him and says "I am not getting a good response from the nurses here."
-Dr. Hardy: "they are not getting you what you want?"
-Dad: "no."
-Dr. Hardy: "What is it you want?"
-Dad: "A really big cigar."
Dr. Hardy turns to me as we all start laughing (including my Dad), and says that we could start him on a nicotine patch to see if that helps...Let's just say, the mention of wanting to go out for a smoke went from once every 2-3 minutes with threats of violence to those who would not help him get a smoke, to a mention every 15-30 minutes...Bless the patch...
Dr. Hardy said that the second MRI did show that there were some tumor cells left around the perimeter, which we knew about, but that they also are seeing something very small on the left side as well. He says we won't really know the full story until he gets a PET scan in a few weeks.
He also said he would be staying at Grossmont for another couple of days.
I really noticed him processing better today. He was a little better to reason with on most things. He really is funny too. He keeps cracking jokes and they get funnier and more complex every day. One of the funniest moments today is when my Mom told him I was communicating to everyone on my "blob," and he quickly corrected her and said "BLOG...Not 'blob' Dorth..."
Before we left, he was very calm, and at one point said "I will be staying here because it is the best place for me in my condition." I hope this kinder, gentler Dad continues...It sure makes it easier on everyone, especially him.
He really is processing things better. When we were talking about the date (they ask him the day, date, month and year, and if he knows where he is to see how he is processing...He hates it), and he was able to get that 17 comes after 16 and Tuesday comes after Monday much quicker today.
He is awake and talks all day long. He is always engaged. It is so tiring...For me too!:) Usually when someone is sick and in the hospital, you talk awhile, then they sleep a little, then you talk, and maybe they have a bite to eat, then rest...Not with my Dad. He has been up all day, and not sleeping very well at night. They were going to give him a sleeping pill tonight. He needs the rest...I hope he gets it.
One last funny...He kept telling me that he wanted me to bring in a recorder so we could record all of the stuff going on, and how he is being mistreated. He said that there are people who are loud and complain and are really bothersome...I asked him if he knew who was being like that now, and he looked at me and said "your old Dad?"
He was giving them such a hard time this morning, they called me to come in. So, I went down around 9:00, and he was very agitated. Wanting a cigar so badly, and wanting to get up. He also was feeling like he was not being treated well (contrary to everything we have seen), and he wants to speak to the high ups. He went on and on about how he was going to give the doctor a piece of his mind...Oh geez, that was a really bad choice of words wasn't it...
When Dr. Hardy arrived, my Dad had been with the physical therapists. They tried to help him get up, but he couldn't explain well enough for them to get him up. So, after working with him in misery for about 15 minutes, they got him into a wheelchair so he could sit for awhile. Just as they came back to get him into bed, Dr. Hardy walked in. I am preparing for this tongue lashing he is ready to unleash...Dr. Hardy starts talking and my Dad is the most attentive and polite, and making comments like "well you can't ask for much better than that" in response to Dr. Hardy saying they got about 90% of the tumor out.
So, Dr. Hardy asks him how he is...And I think, "oh boy, here it comes..." My Dad looks at him and says "I am not getting a good response from the nurses here."
-Dr. Hardy: "they are not getting you what you want?"
-Dad: "no."
-Dr. Hardy: "What is it you want?"
-Dad: "A really big cigar."
Dr. Hardy turns to me as we all start laughing (including my Dad), and says that we could start him on a nicotine patch to see if that helps...Let's just say, the mention of wanting to go out for a smoke went from once every 2-3 minutes with threats of violence to those who would not help him get a smoke, to a mention every 15-30 minutes...Bless the patch...
Dr. Hardy said that the second MRI did show that there were some tumor cells left around the perimeter, which we knew about, but that they also are seeing something very small on the left side as well. He says we won't really know the full story until he gets a PET scan in a few weeks.
He also said he would be staying at Grossmont for another couple of days.
I really noticed him processing better today. He was a little better to reason with on most things. He really is funny too. He keeps cracking jokes and they get funnier and more complex every day. One of the funniest moments today is when my Mom told him I was communicating to everyone on my "blob," and he quickly corrected her and said "BLOG...Not 'blob' Dorth..."
Before we left, he was very calm, and at one point said "I will be staying here because it is the best place for me in my condition." I hope this kinder, gentler Dad continues...It sure makes it easier on everyone, especially him.
He really is processing things better. When we were talking about the date (they ask him the day, date, month and year, and if he knows where he is to see how he is processing...He hates it), and he was able to get that 17 comes after 16 and Tuesday comes after Monday much quicker today.
He is awake and talks all day long. He is always engaged. It is so tiring...For me too!:) Usually when someone is sick and in the hospital, you talk awhile, then they sleep a little, then you talk, and maybe they have a bite to eat, then rest...Not with my Dad. He has been up all day, and not sleeping very well at night. They were going to give him a sleeping pill tonight. He needs the rest...I hope he gets it.
One last funny...He kept telling me that he wanted me to bring in a recorder so we could record all of the stuff going on, and how he is being mistreated. He said that there are people who are loud and complain and are really bothersome...I asked him if he knew who was being like that now, and he looked at me and said "your old Dad?"
Monday, June 16, 2008
Taking the bad with the good...
So, like I said, today was better...Not really good just yet, but better, and that is something. One moment I have him convinced that he just needs to lie still, and heal, and the next second, he is trying to get out of bed by himself.
We like his night nurse tonight...A burly guy named "Junior." Both my Mom and I feel confident when he is around. He reasons well with my Dad. He did tell us that the Ativan did not work at all last night and he was up all night again. Let's hope tonight is a little better.
Hoping tomorrow is even better.
Much love.
We like his night nurse tonight...A burly guy named "Junior." Both my Mom and I feel confident when he is around. He reasons well with my Dad. He did tell us that the Ativan did not work at all last night and he was up all night again. Let's hope tonight is a little better.
Hoping tomorrow is even better.
Much love.
Better today...
So, spent most of the afternoon at the hospital. He is doing better today (I know, just like Dr. Hardy said...). He is still confused, but not nearly as agitated, and we can reason with him a little (only slightly, really) better.
We met with our case worker, Maureen. She is very nice and gave us lots of information on the next steps in the process. We have decided to have him go to a skilled nursing facility where he can get physical therapy, speech therapy (I personally don't think he needs much speech therapy, but I want him to benefit from all he can), and occupational therapy. Our ultimate goal is to get him home and as back to normal as possible. What this new normal actually is has yet to be seen, but we are certainly going to do all we can to make him as happy, comfortable and confident as possible. She doesn't think he will be discharged tomorrow, so maybe Wednesday or even Thursday maybe. I hope to talk to Dr. Hardy tomorrow to get the results of the second MRI, and find out what he thinks of my Dad's case now and what next steps with him are. We unfortunately missed him both times he stopped by my Dad's room today.
I guess Physical Therapy stopped by to get him sitting on the edge of the bed. He kept telling all of us that they wanted him to try and stand in these socks with sticky bottoms and that it wasn't going to work. We all sort of just said, "don't worry, they know what they are doing."
My Mom and I went down to the cafeteria for a drink and a snack, and they had a woman selling purses and wallets. My Mom and I found this beautiful purse, and she offered to buy it for me for my birthday. She says she has not had the chance to shop for my birthday, so could this be my present...Let's see...I get a fabulous purse, I get it a week and a half early, and I take one less worry off my Mom's mind..."Um yah, Dorth, the purse is perfect..."
So we go back upstairs, and she wants to show my Dad what they got me for my birthday, and he says "boy, is that nice...You have a purse and I don't have any shoes..." So, I get to thinking, and I ask the nurse's aid who has been in his room all day if the PT guys put his shoes on...She said "no, there aren't any shoes, just the brace." This sets all sorts of panic in as I look all over the room for his shoes, because he cannot walk without the stability of his shoes. Come to find out, they never brought his stuff up from ICU, and I made a beeline over there to look. Sure enough, they were in the dresser along with his pants, and the picture frame I brought him of the three of us. I have made them put a note in his file, and written in big letters on the dry erase board, "HE MUST HAVE HIS SHOES ON TO WALK!!!"
Bless his heart...He is getting better...Very, very slowly...But I will take ANYTHING I can get.
I am thinking that depending on how tonight and tomorrow goes, maybe he can have a few visitors later this week. I will keep you all posted.
Love to all.
We met with our case worker, Maureen. She is very nice and gave us lots of information on the next steps in the process. We have decided to have him go to a skilled nursing facility where he can get physical therapy, speech therapy (I personally don't think he needs much speech therapy, but I want him to benefit from all he can), and occupational therapy. Our ultimate goal is to get him home and as back to normal as possible. What this new normal actually is has yet to be seen, but we are certainly going to do all we can to make him as happy, comfortable and confident as possible. She doesn't think he will be discharged tomorrow, so maybe Wednesday or even Thursday maybe. I hope to talk to Dr. Hardy tomorrow to get the results of the second MRI, and find out what he thinks of my Dad's case now and what next steps with him are. We unfortunately missed him both times he stopped by my Dad's room today.
I guess Physical Therapy stopped by to get him sitting on the edge of the bed. He kept telling all of us that they wanted him to try and stand in these socks with sticky bottoms and that it wasn't going to work. We all sort of just said, "don't worry, they know what they are doing."
My Mom and I went down to the cafeteria for a drink and a snack, and they had a woman selling purses and wallets. My Mom and I found this beautiful purse, and she offered to buy it for me for my birthday. She says she has not had the chance to shop for my birthday, so could this be my present...Let's see...I get a fabulous purse, I get it a week and a half early, and I take one less worry off my Mom's mind..."Um yah, Dorth, the purse is perfect..."
So we go back upstairs, and she wants to show my Dad what they got me for my birthday, and he says "boy, is that nice...You have a purse and I don't have any shoes..." So, I get to thinking, and I ask the nurse's aid who has been in his room all day if the PT guys put his shoes on...She said "no, there aren't any shoes, just the brace." This sets all sorts of panic in as I look all over the room for his shoes, because he cannot walk without the stability of his shoes. Come to find out, they never brought his stuff up from ICU, and I made a beeline over there to look. Sure enough, they were in the dresser along with his pants, and the picture frame I brought him of the three of us. I have made them put a note in his file, and written in big letters on the dry erase board, "HE MUST HAVE HIS SHOES ON TO WALK!!!"
Bless his heart...He is getting better...Very, very slowly...But I will take ANYTHING I can get.
I am thinking that depending on how tonight and tomorrow goes, maybe he can have a few visitors later this week. I will keep you all posted.
Love to all.
Forward momentum...
We keep pushing forward. He was apparently up most of the night, and they gave him more Ativan around 1:00, which caused him to sleep until about 9:00 this morning. From what I understand, they won't be giving him anymore, because it makes him sleep too long. Last night, he was still confused and experiencing hallucinations, and just really unhappy to be there.
My Mom got a call from the woman who will help us to figure out what we do next. Where he will go when he leaves the hospital, (home or rehab) and what we will need for him. We should be meeting with her early this afternoon.
I thought I might share a short story about the title of this blog..."Scotch on the rocks." Those of you who know my Dad personally probably know him as "Scotch" or "Scotchie." At work, he always went by Ed. I thought I would share the story of why he has two names.
My Dad is a junior...Edward George Reed Jr. Like most juniors, there is usually another name to help identify which person...Sometimes it is literally "Junior," and others it is a shortened form of the name "Johnny" or "Little John." Well, in my Dad's case, it was decided pretty early on.
My Grandfather's uncle, who had just emigrated from Scotland, had come over to see the first born son of my grandparents. He came over, picked up my blanket-bundled Dad, and took one look at him and said "he looks just like a little Scotchie," which was a word used to describe a little Scotsman...From then on, my Dad was "Scotch" or "Scotchie" to the family and close friends.
So, forgive my Mom and I if we refer to him as "Scotchie" if you are used to Ed and vice versa...:) It is interchangeable to us.
We will let you know how the meeting with the evaluator goes.
Much love to all.
My Mom got a call from the woman who will help us to figure out what we do next. Where he will go when he leaves the hospital, (home or rehab) and what we will need for him. We should be meeting with her early this afternoon.
I thought I might share a short story about the title of this blog..."Scotch on the rocks." Those of you who know my Dad personally probably know him as "Scotch" or "Scotchie." At work, he always went by Ed. I thought I would share the story of why he has two names.
My Dad is a junior...Edward George Reed Jr. Like most juniors, there is usually another name to help identify which person...Sometimes it is literally "Junior," and others it is a shortened form of the name "Johnny" or "Little John." Well, in my Dad's case, it was decided pretty early on.
My Grandfather's uncle, who had just emigrated from Scotland, had come over to see the first born son of my grandparents. He came over, picked up my blanket-bundled Dad, and took one look at him and said "he looks just like a little Scotchie," which was a word used to describe a little Scotsman...From then on, my Dad was "Scotch" or "Scotchie" to the family and close friends.
So, forgive my Mom and I if we refer to him as "Scotchie" if you are used to Ed and vice versa...:) It is interchangeable to us.
We will let you know how the meeting with the evaluator goes.
Much love to all.
Sunday, June 15, 2008
So, when we got their this morning, he was still agitated and frustrated. Dr. Hardy came in and spoke to him to get an idea of what was going on. When I talked to him, I asked if this is what he expected, and he said that this is indeed what he warned us about and he is sure it is brain swelling.
He gave him another drug to help try to reduce some more of the swelling, and gave him Ativan to calm him down a little. So, finally, he rested. He fell asleep around 1:00 pm, and they took him down for the MRI, brought him back up to the ICU, and then moved him into a regular room, and he slept through it all. He didn't wake until about 7:00 this evening. He needed that rest because he barely slept at all since he woke up from surgery.
When he awoke, he is less agitated, but still confused and insistent. He is frustrated at having to stay in bed...He is a pretty active guy, and likes to do things on his own. He is having a hard time understanding why he has to stay in bed, and why he can't have a cigar and his wine. He usually has a glass every night, and the Dr. says your body gets dependent on that, and that may be contributing to the confusion. I also think it has to do with his rituals...I think he keeps trying to do them in an effort to figure out what is going on and where he is. I think he is looking for some stability.
Hopefully, the swelling will continue to decrease, and he will get back to someone who more closely resembles my Dad.
I haven't really gone much into how we wound up here.
It is hard to look back and try to see the signs...Hindsight is 20/20, and when we talk about the signs, it makes me wonder why we didn't act sooner. But the truth is, the signs were spread so far apart, and fairly random, that it would have been something that I witnessed and said to myself "well, that was weird," but it went away and so did the thought.
The first week in June found my Dad having problems getting up on to his feet. He has had some issues with his right shoulder for some time now, and even had minor surgery a number of years ago to help clean out the joint so it would be stronger. He was always careful to protect that joint, because he knew that if he hurt it badly, it may be the end of him being able to walk on his own. So, he kept saying that he could not remember how he got up from a table or a chair he has been getting out of for the past 15 years. And when he could not remember, he would get flustered. But once he was on his feet, he would walk just fine, just like always. So it was very hard to tell if he was having a hard time getting up because he was trying to protect his shoulder, or (now that we are where we are) simply forgetting HOW to get up. My parents have some amazing neighbors, and two of the men in the neighborhood would come over and help him up. The neighbors were over several times a day during that first week of June.
Then came my Mom's birthday on the 7th. They called me in the morning to tell me that my Dad was not up to going out to dinner, so we were going to bring in Chinese food and celebrate at home. Then I came to find out that my Dad completely forgot my Mom's birthday, and didn't have a gift or a card for her. He was really upset. So, my Mom called me to let me know that he was having a bad day, and she thought there was something wrong...Maybe a touch of dementia or something. So, I called him and asked him how he forgot, and he said that it just slipped his mind...He seemed distressed yet accepting about this. So, I offered to go out and get my Mom a few gifts for him.
We spent the evening eating Chinese food and chocolate cake, and questioning my Dad as to where his mind was and what was going on with him. And they shared with me for the first time how challenging the week before had been.
I called on Sunday, and told my Dad he needed to call the Dr. first thing on Monday, and they did. The Dr. called back and talked to my Dad on the phone, and in addition to looking for a referral to his orthopedic surgeon for his shoulder (which was my Dad's first priority), they shared the memory and confusion issues with the Dr. The Dr. said his nurse would call to schedule an appointment, and when she did later that morning, the appointment was for June the 23rd. I told him this was unacceptable. So, my Mom planned to call Tuesday morning to see if he could get in earlier.
The next day, my folks called my Dad's cousin to see if they could come over and help out a little with my Dad. And my Dad knew that he was in need of some help, so he asked his cousin's wife to help out with calling the insurance company to find out what sort of coverage they had in case my Dad needed some help around the house. And she was just wonderful in making those calls and my Dad's cousin came by and spent most of the day helping my Dad. I continued to tell my folks that I was uncomfortable with waiting much longer before he saw a Dr.
I finally convinced them to take him to the ER, and had him transported to the Emergency Room first thing Wednesday morning. They did a CT scan and found an area of swelling, and admitted him and ran the first MRI which showed the tumor.
So, long story short, there were a few signs over the last few months, but nothing really severe until last two weeks. It has certainly been an unbelievable week...
We are being showered with love and concern, and we so appreciate it from all sides. Every single one of your thoughts and prayers matter immensely to us and to my Dad. We are hoping that tomorrow brings more improvement. I will let you know tomorrow in my next post...Until then, love to all.
He gave him another drug to help try to reduce some more of the swelling, and gave him Ativan to calm him down a little. So, finally, he rested. He fell asleep around 1:00 pm, and they took him down for the MRI, brought him back up to the ICU, and then moved him into a regular room, and he slept through it all. He didn't wake until about 7:00 this evening. He needed that rest because he barely slept at all since he woke up from surgery.
When he awoke, he is less agitated, but still confused and insistent. He is frustrated at having to stay in bed...He is a pretty active guy, and likes to do things on his own. He is having a hard time understanding why he has to stay in bed, and why he can't have a cigar and his wine. He usually has a glass every night, and the Dr. says your body gets dependent on that, and that may be contributing to the confusion. I also think it has to do with his rituals...I think he keeps trying to do them in an effort to figure out what is going on and where he is. I think he is looking for some stability.
Hopefully, the swelling will continue to decrease, and he will get back to someone who more closely resembles my Dad.
I haven't really gone much into how we wound up here.
It is hard to look back and try to see the signs...Hindsight is 20/20, and when we talk about the signs, it makes me wonder why we didn't act sooner. But the truth is, the signs were spread so far apart, and fairly random, that it would have been something that I witnessed and said to myself "well, that was weird," but it went away and so did the thought.
The first week in June found my Dad having problems getting up on to his feet. He has had some issues with his right shoulder for some time now, and even had minor surgery a number of years ago to help clean out the joint so it would be stronger. He was always careful to protect that joint, because he knew that if he hurt it badly, it may be the end of him being able to walk on his own. So, he kept saying that he could not remember how he got up from a table or a chair he has been getting out of for the past 15 years. And when he could not remember, he would get flustered. But once he was on his feet, he would walk just fine, just like always. So it was very hard to tell if he was having a hard time getting up because he was trying to protect his shoulder, or (now that we are where we are) simply forgetting HOW to get up. My parents have some amazing neighbors, and two of the men in the neighborhood would come over and help him up. The neighbors were over several times a day during that first week of June.
Then came my Mom's birthday on the 7th. They called me in the morning to tell me that my Dad was not up to going out to dinner, so we were going to bring in Chinese food and celebrate at home. Then I came to find out that my Dad completely forgot my Mom's birthday, and didn't have a gift or a card for her. He was really upset. So, my Mom called me to let me know that he was having a bad day, and she thought there was something wrong...Maybe a touch of dementia or something. So, I called him and asked him how he forgot, and he said that it just slipped his mind...He seemed distressed yet accepting about this. So, I offered to go out and get my Mom a few gifts for him.
We spent the evening eating Chinese food and chocolate cake, and questioning my Dad as to where his mind was and what was going on with him. And they shared with me for the first time how challenging the week before had been.
I called on Sunday, and told my Dad he needed to call the Dr. first thing on Monday, and they did. The Dr. called back and talked to my Dad on the phone, and in addition to looking for a referral to his orthopedic surgeon for his shoulder (which was my Dad's first priority), they shared the memory and confusion issues with the Dr. The Dr. said his nurse would call to schedule an appointment, and when she did later that morning, the appointment was for June the 23rd. I told him this was unacceptable. So, my Mom planned to call Tuesday morning to see if he could get in earlier.
The next day, my folks called my Dad's cousin to see if they could come over and help out a little with my Dad. And my Dad knew that he was in need of some help, so he asked his cousin's wife to help out with calling the insurance company to find out what sort of coverage they had in case my Dad needed some help around the house. And she was just wonderful in making those calls and my Dad's cousin came by and spent most of the day helping my Dad. I continued to tell my folks that I was uncomfortable with waiting much longer before he saw a Dr.
I finally convinced them to take him to the ER, and had him transported to the Emergency Room first thing Wednesday morning. They did a CT scan and found an area of swelling, and admitted him and ran the first MRI which showed the tumor.
So, long story short, there were a few signs over the last few months, but nothing really severe until last two weeks. It has certainly been an unbelievable week...
We are being showered with love and concern, and we so appreciate it from all sides. Every single one of your thoughts and prayers matter immensely to us and to my Dad. We are hoping that tomorrow brings more improvement. I will let you know tomorrow in my next post...Until then, love to all.
Just as the Dr. said...
Called over to the hospital this morning, and I guess he got no better after we left last night. He is very agitated, and when I say agitated, I mean angry and paranoid and insistent. This is not my father right now. Please, I know everyone wants to see him, but I would rather not have most people see him this way right now. I don't want him to get anymore stimulation than he has to. I know he would not want people to see him this way, he has so much pride in himself. I will keep everyone posted, and hopefully within a couple days, he will be more back to himself.
I have all hopes that this is caused by the post op swelling that Dr. Hardy warned us of, but I never could have imagined he would be this altered. He is desperate for a cigar, and wants a "whole liter of wine, and a margarita..." He also feels like he is being held hostage. The hospital called my Mom to talk to him around Midnight, to see if that would calm him down, but I guess it didn't. He didn't sleep at all last night and most of yesterday. We asked if they could give him something to calm him down or make him sleep, and from what I understand, they want to be able to tell if symptoms are from the results of the surgery and not a medication. They don't think they will be able to to the post op MRI today because there is no way my Dad will remain still for the test. So they may try a CT Scan, but it certainly does not give the detailed picture an MRI would, but it will be something.
All the nurses say that this is to be expected. So in all hopes, even if it gets worse over the next couple of days, it should start getting better around day 5 post op.
I haven't really talked about the Dr.'s and care we are receiving at Grossmont Hospital. They have been amazing. The nurses have all been patient and kind, and from what I can tell the Dr.'s are amazing. Dr. Cheng is the neurologist, and Dr. Tyrone Hardy is the neurosurgeon who did the surgery. We all really like Dr. Hardy. He is very calm, very straightforward and just a very sweet man. When we first met him in the ER, he told me to Google him to see what he is all about...So, when I got home that night, I did. Here are some of the links about him:
http://sdnds.com/Consultants/hardy.htm
http://www.spineuniverse.com/mdpage.php?doctorID=2896
They still plan on having him moved out of the ICU, but they will have a person in the room to watch him at all times.
I will send another update when I get home tonight. Thank you for all your calls and kind words and emails. If we don't get right back to you, it is only because we are with him. I will do my best to keep everyone informed.
Love to all.
I have all hopes that this is caused by the post op swelling that Dr. Hardy warned us of, but I never could have imagined he would be this altered. He is desperate for a cigar, and wants a "whole liter of wine, and a margarita..." He also feels like he is being held hostage. The hospital called my Mom to talk to him around Midnight, to see if that would calm him down, but I guess it didn't. He didn't sleep at all last night and most of yesterday. We asked if they could give him something to calm him down or make him sleep, and from what I understand, they want to be able to tell if symptoms are from the results of the surgery and not a medication. They don't think they will be able to to the post op MRI today because there is no way my Dad will remain still for the test. So they may try a CT Scan, but it certainly does not give the detailed picture an MRI would, but it will be something.
All the nurses say that this is to be expected. So in all hopes, even if it gets worse over the next couple of days, it should start getting better around day 5 post op.
I haven't really talked about the Dr.'s and care we are receiving at Grossmont Hospital. They have been amazing. The nurses have all been patient and kind, and from what I can tell the Dr.'s are amazing. Dr. Cheng is the neurologist, and Dr. Tyrone Hardy is the neurosurgeon who did the surgery. We all really like Dr. Hardy. He is very calm, very straightforward and just a very sweet man. When we first met him in the ER, he told me to Google him to see what he is all about...So, when I got home that night, I did. Here are some of the links about him:
http://sdnds.com/Consultants/hardy.htm
http://www.spineuniverse.com/mdpage.php?doctorID=2896
They still plan on having him moved out of the ICU, but they will have a person in the room to watch him at all times.
I will send another update when I get home tonight. Thank you for all your calls and kind words and emails. If we don't get right back to you, it is only because we are with him. I will do my best to keep everyone informed.
Love to all.
Saturday, June 14, 2008
Post Op
So, Dr. Hardy removed the tumor yesterday. It took nearly 4 hours, and they were able to remove about 90% of the tumor. The other 10% was close to the motor skills area of the brain, and they didn't want to risk more damage there. The tumor was about the size of a tennis ball, and has been preliminarily diagnosed as a glioblastoma multiforme, and they think it is of the astrocyte variety. They will not be sure of the exact diagnosis until the biopsy comes back from pathology in a week or two.
The tumor is similar to Senator Kennedy's in type and location, except my Dad's is on the right side, and I am assuming larger, and also in the temporal lobe. The part of the brain that effects physical strength and organization...Like numbers for instance...My Dad can look at a number and tell you what it is, but if he tries to add or subtract or anything like that, he gets very confused.
Here is a good video from CNN with Dr. Sanjay Gupta that outlines Kennedy's tumor and treatment, and other than Kennedy's being on the left and my Dad's on the right, it seems to be about the same diagnosis. http://www.cnn.com/video/#/video/health/2008/06/02/gupta.kennedy.brain.cnn?iref=videosearch
The Dr. told us he would be much like he was prior to the surgery afterwards. He then went on to say that the swelling increases and he will tend to decline from the second to the fifth day after surgery. True to form, he was doing very well yesterday and today until early evening. He was then quite confused, and rather combative. He had little rest today, and probably too much stimulation, as there were quite a few visitors today.
He needs a good night sleep, which I hope he gets. When Mom and I left around 9:30, he was insisting that he needed to take a walk around the hospital before he went to bed.
Tomorrow, they are supposed to do a post-op MRI to compare to the pre-op films. They also plan to move him from the surgical ICU to a regular room if all goes well. And, they are having the physical and occupational therapists work him out a little, and hopefully get him walking a little to try and keep his strength up. Looks to be another big day.
The tumor is similar to Senator Kennedy's in type and location, except my Dad's is on the right side, and I am assuming larger, and also in the temporal lobe. The part of the brain that effects physical strength and organization...Like numbers for instance...My Dad can look at a number and tell you what it is, but if he tries to add or subtract or anything like that, he gets very confused.
Here is a good video from CNN with Dr. Sanjay Gupta that outlines Kennedy's tumor and treatment, and other than Kennedy's being on the left and my Dad's on the right, it seems to be about the same diagnosis. http://www.cnn.com/video/#/video/health/2008/06/02/gupta.kennedy.brain.cnn?iref=videosearch
The Dr. told us he would be much like he was prior to the surgery afterwards. He then went on to say that the swelling increases and he will tend to decline from the second to the fifth day after surgery. True to form, he was doing very well yesterday and today until early evening. He was then quite confused, and rather combative. He had little rest today, and probably too much stimulation, as there were quite a few visitors today.
He needs a good night sleep, which I hope he gets. When Mom and I left around 9:30, he was insisting that he needed to take a walk around the hospital before he went to bed.
Tomorrow, they are supposed to do a post-op MRI to compare to the pre-op films. They also plan to move him from the surgical ICU to a regular room if all goes well. And, they are having the physical and occupational therapists work him out a little, and hopefully get him walking a little to try and keep his strength up. Looks to be another big day.
Thursday, June 12, 2008
It was the best of times...It was the worst of times...
Welcome to my blog...I am starting this blog to chronicle the status of my Dad's brain tumor and recovery. He was diagnosed yesterday, June 11 with a large brain tumor in the right temporal lobe of his brain.
Life has been challenging for my Dad to say the least. Stricken with Polio at the age of 15, he was told he would never walk again. Being strong and athletic prior to contracting the disease, he was bound and determined to prove them wrong...And that he did.
My Dad went on to graduate high school, and college, and work at the same company for 44 years. He has also only consented to using a wheelchair 3 times in his life that I can remember. All the times we would go to theme parks when I was a child, he would walk the whole thing, never a complaint, never using his disability as a crutch (no pun intended). A strong, sharp, intelligent man, my Dad worked to provide for his wife and daughter...Always thinking of the future, preparing for the worst, expecting the best.
He has lead a funny life since he retired. He lives for going to Costco every week for a hot dog, a visit to the bank from time to time, watching the stock market...And going to lunch every few weeks with his work buddies. Oh, and he is famous for forwarding all of the emails warning about some unbelievable scam, or other random urban legend that comes across his inbox.
My folks were in a place of peace...Doing what they want, when the want, where they want. Living the life every retired person dreams of. Enjoying each other's company, and taking care of one another. 40 years together last April 20th.
This has been a shock to us all. So hard to believe that this man who has fought all his life against the weakness that Polio left him with, who relied on his wits and intelligence and determination is diagnosed with a brain tumor that has effected the very things he values and is known for.
The surgery is tomorrow, Friday the 13th (my lucky day..always has been), in the morning. We will all be sending good thoughts and love into the operating room with Dr. Hardy. I will add more as things progress.
Life has been challenging for my Dad to say the least. Stricken with Polio at the age of 15, he was told he would never walk again. Being strong and athletic prior to contracting the disease, he was bound and determined to prove them wrong...And that he did.
My Dad went on to graduate high school, and college, and work at the same company for 44 years. He has also only consented to using a wheelchair 3 times in his life that I can remember. All the times we would go to theme parks when I was a child, he would walk the whole thing, never a complaint, never using his disability as a crutch (no pun intended). A strong, sharp, intelligent man, my Dad worked to provide for his wife and daughter...Always thinking of the future, preparing for the worst, expecting the best.
He has lead a funny life since he retired. He lives for going to Costco every week for a hot dog, a visit to the bank from time to time, watching the stock market...And going to lunch every few weeks with his work buddies. Oh, and he is famous for forwarding all of the emails warning about some unbelievable scam, or other random urban legend that comes across his inbox.
My folks were in a place of peace...Doing what they want, when the want, where they want. Living the life every retired person dreams of. Enjoying each other's company, and taking care of one another. 40 years together last April 20th.
This has been a shock to us all. So hard to believe that this man who has fought all his life against the weakness that Polio left him with, who relied on his wits and intelligence and determination is diagnosed with a brain tumor that has effected the very things he values and is known for.
The surgery is tomorrow, Friday the 13th (my lucky day..always has been), in the morning. We will all be sending good thoughts and love into the operating room with Dr. Hardy. I will add more as things progress.
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