My birthday is coming up. I'll be 48 years old. I'm not secretive about my age. It still sounds so weird to say out loud though. I've been saying I am 48 for most of this year just so that I get used to it. For the past few years, Adam has been taking me out to lunch on my birthday. Except last year when he moved to South Carolina, darn him. (I kid) Mike and I didn't do much for each other for birthdays except to make sure that we only say nice things to one another for the entire day. :)
Last year Mike was a little more attentive and mushy because he knew that I missed Adam a bunch. So now this year will be my first year in 5 years without Mike sending me messages. Actually, it was last year for my birthday when he sent me one of his favorite books, Watership Down. When I opened the email from him when I woke up and saw that he had sent me a book I went in and gave him a kiss in his sleep. Then I read the synopsis of the book and found out that it was about rabbits.... as told by rabbits. The next time I saw him awake I think he had an idea what my reaction was going to be because he was smiling before I even said anything. He typed out for me that it was one of the few books in his life that he had read over and over. I was already reading a couple of books so I didn't start it right away. One of the books I was reading was Game of Thrones per Mike's suggestion. One of the things we enjoyed doing together was talking about books. Typing was getting harder for him so for me to tell him what I read the day before and what I thought might be happening next was easy for him to enjoy. I could ask him yes or no questions about the book he recommended and it kept us connected with something fun. When he was in the hospital, I would often read books out loud to him. We both liked it. At home he usually had audiobooks.com to make the books come a little more alive than my voice. :) Especially with GOTh, he had to explain to me something about the first book when I kept confusing the characters. And when I kept asking how to pronounce words. I hadn't been watching the TV series so I didn't have any idea how to say most of the names.... except ones like Jon Snow.... those were easy. I was reading Watership Down when he went into the hospital that last time. After his cardiac arrest, it was a book that I read out loud to him hoping that he could understand something. I was still trying to come to terms with him being gone mentally and reading the book out loud was a good activity for my mind so I didn't have a mental breakdown. I was glad that I knew what the book meant to him before he died, but I also wish I would have finished it with him. I was conflicted after he died regarding that book. Part of me felt that as soon as I finished the book that part of us would be over, so I didn't want to finish.
So this year will be without Adam (South Carolina) and without Mike. My poor girls will be stuck with me smothering them with kisses all day. :) I have plans to take myself to dinner. I'm going to the Refectory for their Jazz Dinner evening. It's something I go to about once a month. I'm sure I'll probably go to the cemetery too. I find that I leave there feeling better than when I arrive. I need to start bringing a blanket or something, those bugs start freaking me out while sitting on the grass.
I'm very grateful that I am still alive and healthy and able bodied so that I can enjoy another birthday with people I love.
Saturday, June 25, 2016
Sunday, June 19, 2016
Ender and his reason for joining our family
One of the worst hospitalizations Mike and I experienced was at Riverside. That hospitalization was the first time Mike had experienced an attending physician wanting him to die. That is a true statement, she put a lot of effort into fighting us for treatment. She even lied to me about his lab results during her consultation where she told me that I needed to just let him go, that there was nothing further they could do. What she didn't know was that I had drawn blood cultures and other diagnostic labs the day he ended up being admitted. I knew the results independent of that hospital. She didn't know they had ever been drawn and she certainly didn't know that I memorized what they were. The director of the hospital and the attending physician who was also the director of the ICU not only refused him antibiotics but when I argued his case for treatment to the ethics board, they kicked me out. It is the first time that I had ever seen Mike lose his cool and composure to medical staff in front of me. The director was accusing me of video and photographing things, which I was. But it was with Mike's permission. I offered her my cell phone to let them see what I had captured so they could see for themselves that it was only things regarding Mike. As a side note, we did that often. Especially when Mike was so sick that he was unaware of things, I would capture his vitals and color of urine and IV lines by picture and email them to him so that he could always know what was going on. The director claimed that it was illegal.... it isn't. Mike argued with her as he usually does, with great diplomacy and tact, for as long as he could. But their attacks against me became more personal talking about my tone and demeanor.... I still remember Mike's face as he typed out... You are mistaken, she has not said or done anything in response to your personal attacks against her during this entire encounter. (which is true, btw.... she stood nose to nose with me insulting me and I didn't say one freakin word) He NEVER speaks out like that in defense of me. The only time I spoke was when she told him .... Mr. Vollmer, it is easy to see that you used to be a very effective lawyer and that you at one time were a very smart man..... I spoke up, I had to.... I said, No need to speak of him in past tense, you haven't killed him yet and he is still a hell of a lot smarter than you've realized. After Mike realized that they were not reasonable he typed just one more word.... BULLSHIT. He had that computer say that one word in response to anything else they said to us. I've never seen him do that. Mike's adrenaline is what was keeping him alive. They took him off his pain pills unless he asked for them but then he had no way to ask for them. They took him off all antibiotics claiming that it was a wasted effort. His vital signs were showing a worsening of his condition. I met with the ethics board representative and effectively argued for his right to treatment. The attending spent the rest of his entire hospital stay discontinuing his medication every morning at rounds. I spent the rest of his entire hospital stay contacting the attending for the Infectious Disease doctors to get them added back on.
The kicked me out for just the one day. Mike wrote them a letter..... basically telling them that he is entitled to his advocate and medical poa and that if they did not let me resume my visits then he would seek counsel.
Mike fought hard to get better and come home. We couldn't transfer to another hospital because medicaid law wouldn't cover the visit. Something about they only transfer if the current hospital is unable to provided the needed care... not if they are withholding. We couldn't just go home, that would have been AMA (against medical advice) and the entire stay wouldn't be paid for..... that and he would have probably died before we could get him admitted anywhere else. We were stuck there and he knew it. Once he had me back by his side he asked me to not say another word to anyone and he promised to get better. It was a deal I almost kept. They had transferred him out of ICU but the discharge planner had been trying to get in touch with me to send him home.... I also knew that his lab work showed that he needed a blood transfusion and I was working on getting that done (that was thanks to a very nice nurse calling me). I told Mike that I needed him to let me out of our agreement or he would die. He agreed.
Once we were home Mike was more depressed than I had ever seen him. The day he didn't have me by his side was torture for him. He had no access to a call light, no access to communication of any kind. He was totally at the mercy of people who had shown him that they didn't value his life.
So I bought a puppy.
Adam and I researched different breeds of dogs and settled on a Cavalier King Charles Spaniel. Mike approved of the breed. Adam found a home not 10 miles from us who had a litter for sale. Adam drove over and picked out the dog and I met him there with the cash. We didn't have a crate or food or anything. But we had a dog. One of the things Mike and I enjoyed together was books. Early on we had discovered that we both liked Orson Scott Card as an author so Mike messaged me a suggestion for a name..... Ender. Based on the main character in the Ender's Game. Of course, no one understood his name when I would say it.... my brother thought we had said Bender. lol
I had never had a puppy before. Mike was so excited.... he knew I was clueless so he set about educating me (that's his way of showing love). I would get emails for links to books he had bought for me to read. We watched training videos together. I have to say, I didn't do too bad. Ender did exactly what I needed him to.... he loved Mike and Mike loved him. Mike's profile picture on Facebook had never been changed to one of Mike and I, but it was quickly changed to him and Ender. LOL
I'll talk more about Ender another time, but this is the backstory to how Mike ended up with who he called..... My Canine Companion.
The kicked me out for just the one day. Mike wrote them a letter..... basically telling them that he is entitled to his advocate and medical poa and that if they did not let me resume my visits then he would seek counsel.
Mike fought hard to get better and come home. We couldn't transfer to another hospital because medicaid law wouldn't cover the visit. Something about they only transfer if the current hospital is unable to provided the needed care... not if they are withholding. We couldn't just go home, that would have been AMA (against medical advice) and the entire stay wouldn't be paid for..... that and he would have probably died before we could get him admitted anywhere else. We were stuck there and he knew it. Once he had me back by his side he asked me to not say another word to anyone and he promised to get better. It was a deal I almost kept. They had transferred him out of ICU but the discharge planner had been trying to get in touch with me to send him home.... I also knew that his lab work showed that he needed a blood transfusion and I was working on getting that done (that was thanks to a very nice nurse calling me). I told Mike that I needed him to let me out of our agreement or he would die. He agreed.
Once we were home Mike was more depressed than I had ever seen him. The day he didn't have me by his side was torture for him. He had no access to a call light, no access to communication of any kind. He was totally at the mercy of people who had shown him that they didn't value his life.
So I bought a puppy.
Adam and I researched different breeds of dogs and settled on a Cavalier King Charles Spaniel. Mike approved of the breed. Adam found a home not 10 miles from us who had a litter for sale. Adam drove over and picked out the dog and I met him there with the cash. We didn't have a crate or food or anything. But we had a dog. One of the things Mike and I enjoyed together was books. Early on we had discovered that we both liked Orson Scott Card as an author so Mike messaged me a suggestion for a name..... Ender. Based on the main character in the Ender's Game. Of course, no one understood his name when I would say it.... my brother thought we had said Bender. lol
I had never had a puppy before. Mike was so excited.... he knew I was clueless so he set about educating me (that's his way of showing love). I would get emails for links to books he had bought for me to read. We watched training videos together. I have to say, I didn't do too bad. Ender did exactly what I needed him to.... he loved Mike and Mike loved him. Mike's profile picture on Facebook had never been changed to one of Mike and I, but it was quickly changed to him and Ender. LOL
I'll talk more about Ender another time, but this is the backstory to how Mike ended up with who he called..... My Canine Companion.
Saturday, June 18, 2016
Me before You.... the movie
Have you seen the movie Me Before You? I did a couple of weeks ago. I haven't read the book but I hear it's pretty close. I went to see this movie because I really like going to the movies alone and also because a lot of people have been asking me if I've seen it yet.
I had seen the previews and knew that it would probably be a bit of a reminder of Mike for the obvious reasons, but as it turned out..... it wasn't much of one. Not any more than other movies, really.
What it did make me think of is what the people asking me if I had seen it were thinking? Do people really think that this is similar to me and Mike? It really isn't. I didn't meet him as an employee. Mike's disease was not an injury and even though the lack of voluntary movement was the same, the character in the movie couldn't feel anything... Mike could feel everything. Mike NEVER contemplated suicide. We didn't even like the idea of hospice. The female character wasn't really in love with this guy.... she was drawn to him more for her own reasons. That scene on the beach when she realized that everything she did to manipulate (yes, manipulate) him wasn't working and she threw a fit... that wasn't us. The guy wanted to improve her life for real reasons, she was trying to improve his for her own satisfaction... imo.
I applaud the movie for showing that everyone deserves the right to die with dignity or at the very least make their own medical decisions. Even though his injury wasn't degenerative, the laws in the US are changing to allow death with dignity for only terminal diagnosis, it is still a topic worthy of art for the sake of discussion. I hope that people who are wheelchair confined don't watch this and feel hopeless. I hope that people who aren't in a wheelchair think that feeling sorry for people who are wheelchair bound is warranted.
I cried during the scene when she was shaving his face though.... that scene reminded me of us. The very first time I shaved his face we were both laughing a lot. It went like this..... so what are the odds of me killing you if I mess up? .... his answer.... less than permanent disfigurement. I didn't even nic him. And I talked with a Master Shaver and he tutored me on how to give an awesome shave. He even offered to let me go to his shop and I could do a return demonstration (my most effective learning tool). We never ventured into the straight blade world, but the Master Shaver guy said that those were overrated anyway.
I like that the girl finally showed some maturity and decided to support him and be with him and his decision.
If you haven't seen the movie yet, go see it and let me know what you thought.
I had seen the previews and knew that it would probably be a bit of a reminder of Mike for the obvious reasons, but as it turned out..... it wasn't much of one. Not any more than other movies, really.
What it did make me think of is what the people asking me if I had seen it were thinking? Do people really think that this is similar to me and Mike? It really isn't. I didn't meet him as an employee. Mike's disease was not an injury and even though the lack of voluntary movement was the same, the character in the movie couldn't feel anything... Mike could feel everything. Mike NEVER contemplated suicide. We didn't even like the idea of hospice. The female character wasn't really in love with this guy.... she was drawn to him more for her own reasons. That scene on the beach when she realized that everything she did to manipulate (yes, manipulate) him wasn't working and she threw a fit... that wasn't us. The guy wanted to improve her life for real reasons, she was trying to improve his for her own satisfaction... imo.
I applaud the movie for showing that everyone deserves the right to die with dignity or at the very least make their own medical decisions. Even though his injury wasn't degenerative, the laws in the US are changing to allow death with dignity for only terminal diagnosis, it is still a topic worthy of art for the sake of discussion. I hope that people who are wheelchair confined don't watch this and feel hopeless. I hope that people who aren't in a wheelchair think that feeling sorry for people who are wheelchair bound is warranted.
I cried during the scene when she was shaving his face though.... that scene reminded me of us. The very first time I shaved his face we were both laughing a lot. It went like this..... so what are the odds of me killing you if I mess up? .... his answer.... less than permanent disfigurement. I didn't even nic him. And I talked with a Master Shaver and he tutored me on how to give an awesome shave. He even offered to let me go to his shop and I could do a return demonstration (my most effective learning tool). We never ventured into the straight blade world, but the Master Shaver guy said that those were overrated anyway.
I like that the girl finally showed some maturity and decided to support him and be with him and his decision.
If you haven't seen the movie yet, go see it and let me know what you thought.
Thursday, June 16, 2016
Triggered by a shirt
Since coming home from this past weekend where Mike was constantly in my thoughts, I have had random thoughts of our time together creep in my head.
Tonight I am in bed trying to get to sleep and I remember when he first came home to live. I remember his face..... his glowing face. I wanted to have a fresh start. As soon as I had all his immediate medical needs addressed, I set about cleaning him. Getting bed baths in a nursing home just can't seem to get you clean enough. Here at the house I could turn on the space heater so he wouldn't get chilled, I could cover him with soft blankets, I could use soft wash clothes and scented soaps with a lot of lather. If you've never bathed someone you love, I highly recommend it. I was always the one giving the bath of course, but there really isn't anything more intimate. You might think sex is, but when you lovingly wash and take care of someone's body with love it surpasses everything else. I trimmed his nails, I soaked them and filed them. I changed his gastronomy tube. I changed his trach ties. I cut his hair. I shaved his face. I kept him naked. To tell the truth we were both naked a lot. Not vavavoom naked, more like nudist colony naked. Spending all our time together ONLY in a nursing home room...... it was cramped and smelly and people coming in and out at random times. That first day especially was just about freedom.
Mike couldn't raise his arms above nipple line and he couldn't put his palms up without pain. This made putting a shirt on painful. So I did for him what I did for my daughter. I cut the back of the shirt straight up the middle. I bought packs of the softest white t-shirts I could find and I cut the backs out. Since he couldn't move but he could still feel, soft was always my goal. Oddly, he would ask for rough wash clothes every now and then.... must be a guy thing. All his clothes from before living in the nursing home were in storage. His friend brought them over and I went about washing them and cutting the backs. There was one shirt that when it came time to cut, I just didn't. At the time I couldn't tell you why, I just hung it back up as a whole shirt and he never wore it. I know why now. At the reunion I met this beautiful, sweet woman named Gabrielle. She had a picture of when Mike was at his last reunion 10 years ago. Mike knew it would be his last reunion. This is also when he told the majority of his friends of his diagnosis. She posted the picture on Facebook and tagged Mike so that I would find it. (remember I had been drinking so this was the easiest way) I later looked at the picture and saw what he was wearing. The shirt that I couldn't cut, that I hung back up in the closet that he never wore, the shirt that I kept after he died when I got rid of all the others.... that shirt is the one he is wearing in that picture. How strange is that? The shirt has been hanging in my closet since he died. I plan on keeping it there but I moved it to be mixed in with my own clothes. Weird reason.... but I kind of feel like I want it touching my clothes that I'll be wearing.
Tonight I am in bed trying to get to sleep and I remember when he first came home to live. I remember his face..... his glowing face. I wanted to have a fresh start. As soon as I had all his immediate medical needs addressed, I set about cleaning him. Getting bed baths in a nursing home just can't seem to get you clean enough. Here at the house I could turn on the space heater so he wouldn't get chilled, I could cover him with soft blankets, I could use soft wash clothes and scented soaps with a lot of lather. If you've never bathed someone you love, I highly recommend it. I was always the one giving the bath of course, but there really isn't anything more intimate. You might think sex is, but when you lovingly wash and take care of someone's body with love it surpasses everything else. I trimmed his nails, I soaked them and filed them. I changed his gastronomy tube. I changed his trach ties. I cut his hair. I shaved his face. I kept him naked. To tell the truth we were both naked a lot. Not vavavoom naked, more like nudist colony naked. Spending all our time together ONLY in a nursing home room...... it was cramped and smelly and people coming in and out at random times. That first day especially was just about freedom.
Mike couldn't raise his arms above nipple line and he couldn't put his palms up without pain. This made putting a shirt on painful. So I did for him what I did for my daughter. I cut the back of the shirt straight up the middle. I bought packs of the softest white t-shirts I could find and I cut the backs out. Since he couldn't move but he could still feel, soft was always my goal. Oddly, he would ask for rough wash clothes every now and then.... must be a guy thing. All his clothes from before living in the nursing home were in storage. His friend brought them over and I went about washing them and cutting the backs. There was one shirt that when it came time to cut, I just didn't. At the time I couldn't tell you why, I just hung it back up as a whole shirt and he never wore it. I know why now. At the reunion I met this beautiful, sweet woman named Gabrielle. She had a picture of when Mike was at his last reunion 10 years ago. Mike knew it would be his last reunion. This is also when he told the majority of his friends of his diagnosis. She posted the picture on Facebook and tagged Mike so that I would find it. (remember I had been drinking so this was the easiest way) I later looked at the picture and saw what he was wearing. The shirt that I couldn't cut, that I hung back up in the closet that he never wore, the shirt that I kept after he died when I got rid of all the others.... that shirt is the one he is wearing in that picture. How strange is that? The shirt has been hanging in my closet since he died. I plan on keeping it there but I moved it to be mixed in with my own clothes. Weird reason.... but I kind of feel like I want it touching my clothes that I'll be wearing.
Monday, June 13, 2016
Mike's 30th reunion and classroom dedication
I have just returned home from my visit to Pottstown, PA where I was
invited to attend Mike's 30th reunion from the Hill School as well as
attend the ceremony dedicating a classroom to Mike on behalf of his
class of '86. It was a long beautiful drive from Columbus, Ohio. The
weather was fantastic and with the Waze app, I had no trouble finding
the school. Once I registered and found my dorm room, I had no trouble
at all locating one of Mike's good friends, Aleco (Aleco is hard to miss, in a good way). Aleco immediately
set about introducing me to everyone standing near him. This is a kind
gesture he did the entire weekend.
I was excited, honored and nervous to be going. It turned out to be so much more than I could have hoped for. Mike's friends treated me like one of the gang the whole time. But yet, they treated me special..... getting me drinks, carrying things for me, introducing me to people, watching out for me, making sure I felt included, danced with me, drank with me, shared memories with me. I was also finally, not treated with pity. There was no mention about feeling sorry for me at all, that was such a relief.
Everyone I met had a kind word to say about Mike. Everywhere I looked I could imagine Mike being there. Watching his two friends, Aleco and Sam, both who have similar builds and height to Mike, walk around together, I could imagine Mike walking with them.
For two days, I had the privilege of experiencing a little bit of the school that affected Mike so positively during his young life. Aleco even showed me some of Mike's "firsts" there at the school.
For the ceremony on Saturday morning, I went up to the classroom early with Aleco and Sam. I am glad that I did because seeing the display of the keepsakes Mike had from the Hill School that I brought with me to return to the school made me immediately cry. I had hoped I could avoid crying but it wasn't that easy. I know.... it's ok to cry..... I get it. But it also makes me look sad and broken ... and I'm not. It also gives me a headache and makes it hard for me to communicate. So I prefer to do my crying when I am alone. I was able to cry mostly unnoticed until I was able to get a better handle on the amount of tears coming down my face. One girl who was with the school noticed my cheeks were wet and very discreetly handed me tissues and lightly caressed my arm. It was such a kind and gentle gesture that helped focus me back to real time. This stranger was standing in front of me showing me kindness, this was real. Remembering Mike and the reason for my tears was our past. The ceremony included his friends sharing stories of Mike, which made me smile. As a downside, a couple of people who had made a positive contribution to Mike when he needed help the most were also there. That statement might take a little more explaining..... Mike and I were together for 5 years..... when I first met him this couple would come to the nursing home to visit with Mike once a week. After he moved in with me they were only here twice in 2 years. Once for his birthday and once more for a Christmas. They also wrote a booklet about Mike's life.... their version. When they had sent me the file with the final writing, I was just sick to my stomach. I sent out an emailed response telling them how disgusted I was with what they were doing. I had not heard from them at all until seeing them there that day. Again, I found myself in the position I was always in with Mike..... keeping my mouth shut. I stood there and listened to her talk about her book and her "agenda" and her fund raising efforts for her "agenda" during a time when it was supposed to be about Mike.... not her "agenda". I managed to stay civil and I even managed to say a few words. I really wanted to represent Mike as best I could. Afterall, these were people who I barely knew... if at all, and yet they knew me as Mike's girl, and they thought highly of Mike. It was important to me that I was an extension of him.... does that make sense?
He has the most remarkable friends. To honor their classmate this way, was very touching. I am not at all surprised by how well they treated me while I was there. Not only was I hoping to represent Mike well, but I was also trying to not get in the way of the fun that these guys should be having with attending their 30th reunion. I didn't want to seem so shy and backwards that I made them feel awkward and I also didn't want to seem so eager to follow them around like a kid sister. It turns out that I didn't have to be anything but me and they were so incredibly nice to me. I just kept thinking that I wanted Mike to know how incredible his friends were to me.... he would have been so happy to know that. He knew how guarded I was all the time with his family and some friends, he would have been so proud of his friends.
The school grounds were beautiful. The first place I went was to the chapel. Mike had told me that it was his favorite place to hang out there. He said he used to just sit in there in the quiet. So that's what I did. I sat in there in the quiet. It was serene.
There were about a dozen of the guys who were there for the class of '86, but it wasn't just Mike's classmates that knew him. Faculty and people from other classes knew him too. I was privy to overhearing people talk of him when they didn't know who I was and as expected, it was all positive. It was such a wonderful experience for me to be surrounded by his friends in a positive environment. I had too much to drink.... both nights.... but it was good. I can never seem to get out of my head enough to relax and have fun without always watching my phone and hoping my girls are alright. With the amount of alcohol, I let go of that. It also helped that I had no doubt in my mind at all that Mike's friends would never let anything bad happen if they were around. I am always alone and for this weekend, I wasn't. I had people around me who cared about me. I even danced.... freestyle. Don't laugh, but I've never done that. I ballroom dance, I don't do anything else... except in my own livingroom. I even danced a slow dance with his friend Drew and another kind of slow dance with Sam. Sam had moves.... so it was a little more like that ballroom world I knew.
It was a wonderful mixture of being surrounded and being alone. I couldn't have asked for a better experience to relive Mike's youth. I will forever be changed for the better for having been surrounded with that much love for my Mike. To see the lasting effect that his life has had on people and to know that generations to come will see that plaque and know about Mike.... it has changed me.
I stopped at the cemetery on my way home. I just needed to end the weekend with him that way.
I was excited, honored and nervous to be going. It turned out to be so much more than I could have hoped for. Mike's friends treated me like one of the gang the whole time. But yet, they treated me special..... getting me drinks, carrying things for me, introducing me to people, watching out for me, making sure I felt included, danced with me, drank with me, shared memories with me. I was also finally, not treated with pity. There was no mention about feeling sorry for me at all, that was such a relief.
Everyone I met had a kind word to say about Mike. Everywhere I looked I could imagine Mike being there. Watching his two friends, Aleco and Sam, both who have similar builds and height to Mike, walk around together, I could imagine Mike walking with them.
For two days, I had the privilege of experiencing a little bit of the school that affected Mike so positively during his young life. Aleco even showed me some of Mike's "firsts" there at the school.
For the ceremony on Saturday morning, I went up to the classroom early with Aleco and Sam. I am glad that I did because seeing the display of the keepsakes Mike had from the Hill School that I brought with me to return to the school made me immediately cry. I had hoped I could avoid crying but it wasn't that easy. I know.... it's ok to cry..... I get it. But it also makes me look sad and broken ... and I'm not. It also gives me a headache and makes it hard for me to communicate. So I prefer to do my crying when I am alone. I was able to cry mostly unnoticed until I was able to get a better handle on the amount of tears coming down my face. One girl who was with the school noticed my cheeks were wet and very discreetly handed me tissues and lightly caressed my arm. It was such a kind and gentle gesture that helped focus me back to real time. This stranger was standing in front of me showing me kindness, this was real. Remembering Mike and the reason for my tears was our past. The ceremony included his friends sharing stories of Mike, which made me smile. As a downside, a couple of people who had made a positive contribution to Mike when he needed help the most were also there. That statement might take a little more explaining..... Mike and I were together for 5 years..... when I first met him this couple would come to the nursing home to visit with Mike once a week. After he moved in with me they were only here twice in 2 years. Once for his birthday and once more for a Christmas. They also wrote a booklet about Mike's life.... their version. When they had sent me the file with the final writing, I was just sick to my stomach. I sent out an emailed response telling them how disgusted I was with what they were doing. I had not heard from them at all until seeing them there that day. Again, I found myself in the position I was always in with Mike..... keeping my mouth shut. I stood there and listened to her talk about her book and her "agenda" and her fund raising efforts for her "agenda" during a time when it was supposed to be about Mike.... not her "agenda". I managed to stay civil and I even managed to say a few words. I really wanted to represent Mike as best I could. Afterall, these were people who I barely knew... if at all, and yet they knew me as Mike's girl, and they thought highly of Mike. It was important to me that I was an extension of him.... does that make sense?
He has the most remarkable friends. To honor their classmate this way, was very touching. I am not at all surprised by how well they treated me while I was there. Not only was I hoping to represent Mike well, but I was also trying to not get in the way of the fun that these guys should be having with attending their 30th reunion. I didn't want to seem so shy and backwards that I made them feel awkward and I also didn't want to seem so eager to follow them around like a kid sister. It turns out that I didn't have to be anything but me and they were so incredibly nice to me. I just kept thinking that I wanted Mike to know how incredible his friends were to me.... he would have been so happy to know that. He knew how guarded I was all the time with his family and some friends, he would have been so proud of his friends.
The school grounds were beautiful. The first place I went was to the chapel. Mike had told me that it was his favorite place to hang out there. He said he used to just sit in there in the quiet. So that's what I did. I sat in there in the quiet. It was serene.
There were about a dozen of the guys who were there for the class of '86, but it wasn't just Mike's classmates that knew him. Faculty and people from other classes knew him too. I was privy to overhearing people talk of him when they didn't know who I was and as expected, it was all positive. It was such a wonderful experience for me to be surrounded by his friends in a positive environment. I had too much to drink.... both nights.... but it was good. I can never seem to get out of my head enough to relax and have fun without always watching my phone and hoping my girls are alright. With the amount of alcohol, I let go of that. It also helped that I had no doubt in my mind at all that Mike's friends would never let anything bad happen if they were around. I am always alone and for this weekend, I wasn't. I had people around me who cared about me. I even danced.... freestyle. Don't laugh, but I've never done that. I ballroom dance, I don't do anything else... except in my own livingroom. I even danced a slow dance with his friend Drew and another kind of slow dance with Sam. Sam had moves.... so it was a little more like that ballroom world I knew.
It was a wonderful mixture of being surrounded and being alone. I couldn't have asked for a better experience to relive Mike's youth. I will forever be changed for the better for having been surrounded with that much love for my Mike. To see the lasting effect that his life has had on people and to know that generations to come will see that plaque and know about Mike.... it has changed me.
I stopped at the cemetery on my way home. I just needed to end the weekend with him that way.
Saturday, June 4, 2016
Mike loved to eat
I mentioned that when we first met I was feeding him Thanksgiving dinner, right? I probably even mentioned that I was really impressed with his being able to still eat given his respiratory failure status. The chewing I can understand, but to swallow he had to not only manipulate the food to the back of his throat he had to also fight against the air pressure going in to coordinate the swallow. It is quite remarkable that he continued eating for as long as he did. He was quite proud of it too. :)
I have heard that before I had met him and before his diagnosis, that food was a huge pleasure spot for him. I believe it. He even signed a waiver with the nursing home to allow himself to still be fed by mouth even though he had a gastronomy tube. They tried to force him to give it up by making him have a swallow study done by telling him it was to prevent aspiration when it was really to make it more convenient for their staff (maybe a little of both) Standing there feeding him took a lot of time. The kinds of food he was able to eat the best isn't probably what you would think. If the temperature was too extreme he couldn't manipulate the food. If the bite was too big he couldn't manipulate the food. If it had a combination of textures..... you get the idea. He also hated to be fed with metal, he preferred plastic because it wouldn't hold the temperature and also because the bite sizes were easier to control. Candy was his favorite but it also meant that someone had to be right there to give him the next piece. He went through phases with his favorite candies. When he moved in here he had my cooking some but he had come home from living at the nursing home sick and underweight. I didn't have time to cook and I really pushed the meal replacement formula for him so that he could get some weight on. He resisted at first because he felt like eating was one of the last pleasures he had left. I had to emphasize to all the nurses that he is never to be told no if he wants to eat by mouth. That made him feel a lot better. He hated being told he couldn't do something.
The problem came with when he started choking on things he used to be able to eat. Luckily I was home for all of the incidents except one. But that one time almost did him in. The nurse had been feeding him gummy bears (sour, lol) and because the sour ones made him make weird faces, the nurse didn't realize he was seriously in distress. She eventually figured it out and messaged me (I wasn't home). I tried telling her what to do over the phone but she was freaking out. I made it home in under 5 minutes (don't ask) and went straight to getting him "unchoked". It isn't something that you learn in school and there is part of what you are doing that doesn't exactly make sense, but it works. I mentioned that his trach tube had a cuff around it to take up the extra space between the outside dimension of the trach tube and the inside dimension of his trachea.... well, if I deflated the cuff while also using suction in his mouth the air that usually goes into his lungs will come out of his mouth (because the pressure in his mouth is less that the pressure in his lungs, it's naturally diverted). When the ventilator pressure starts pushing air out his mouth it also will dislodge whatever he was trying to swallow (it hadn't gone all the way down either tube) and with the suction I had going in his mouth, I could latch onto the gummy bear and get it out. He also still had a gag reflex that helped. You have to be quick and decisive. There is no room for screwing up or hesitating. After he was stable the nurse called the agency and they refused to feed him any longer. Since the agencies were quick to drop him, everytime we hired a new agency, he was able to eat again for awhile. I still did... because I promised him that I will always do what he asked me to. But when it kept happening more and more, I finally told him that I will continue doing it as long as he wanted me to but that I really didn't want him to die because of a gummy bear. He stopped. He would still put them in his mouth and suck on them but he had to be mindful to keep it in the front of his mouth.
Sometimes when I was really afraid of losing him I would forget that he is afraid of losing function. It would always hit me later that I didn't think of things from his perspective all the time. I did when I regarded the decision as his but I didn't always when his decisions scared the shit out of me. At those moments I thought more of myself. I know that's natural, but now that he isn't here I think about those kind of things a lot.
I have heard that before I had met him and before his diagnosis, that food was a huge pleasure spot for him. I believe it. He even signed a waiver with the nursing home to allow himself to still be fed by mouth even though he had a gastronomy tube. They tried to force him to give it up by making him have a swallow study done by telling him it was to prevent aspiration when it was really to make it more convenient for their staff (maybe a little of both) Standing there feeding him took a lot of time. The kinds of food he was able to eat the best isn't probably what you would think. If the temperature was too extreme he couldn't manipulate the food. If the bite was too big he couldn't manipulate the food. If it had a combination of textures..... you get the idea. He also hated to be fed with metal, he preferred plastic because it wouldn't hold the temperature and also because the bite sizes were easier to control. Candy was his favorite but it also meant that someone had to be right there to give him the next piece. He went through phases with his favorite candies. When he moved in here he had my cooking some but he had come home from living at the nursing home sick and underweight. I didn't have time to cook and I really pushed the meal replacement formula for him so that he could get some weight on. He resisted at first because he felt like eating was one of the last pleasures he had left. I had to emphasize to all the nurses that he is never to be told no if he wants to eat by mouth. That made him feel a lot better. He hated being told he couldn't do something.
The problem came with when he started choking on things he used to be able to eat. Luckily I was home for all of the incidents except one. But that one time almost did him in. The nurse had been feeding him gummy bears (sour, lol) and because the sour ones made him make weird faces, the nurse didn't realize he was seriously in distress. She eventually figured it out and messaged me (I wasn't home). I tried telling her what to do over the phone but she was freaking out. I made it home in under 5 minutes (don't ask) and went straight to getting him "unchoked". It isn't something that you learn in school and there is part of what you are doing that doesn't exactly make sense, but it works. I mentioned that his trach tube had a cuff around it to take up the extra space between the outside dimension of the trach tube and the inside dimension of his trachea.... well, if I deflated the cuff while also using suction in his mouth the air that usually goes into his lungs will come out of his mouth (because the pressure in his mouth is less that the pressure in his lungs, it's naturally diverted). When the ventilator pressure starts pushing air out his mouth it also will dislodge whatever he was trying to swallow (it hadn't gone all the way down either tube) and with the suction I had going in his mouth, I could latch onto the gummy bear and get it out. He also still had a gag reflex that helped. You have to be quick and decisive. There is no room for screwing up or hesitating. After he was stable the nurse called the agency and they refused to feed him any longer. Since the agencies were quick to drop him, everytime we hired a new agency, he was able to eat again for awhile. I still did... because I promised him that I will always do what he asked me to. But when it kept happening more and more, I finally told him that I will continue doing it as long as he wanted me to but that I really didn't want him to die because of a gummy bear. He stopped. He would still put them in his mouth and suck on them but he had to be mindful to keep it in the front of his mouth.
Sometimes when I was really afraid of losing him I would forget that he is afraid of losing function. It would always hit me later that I didn't think of things from his perspective all the time. I did when I regarded the decision as his but I didn't always when his decisions scared the shit out of me. At those moments I thought more of myself. I know that's natural, but now that he isn't here I think about those kind of things a lot.
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