I have talked about the love Mike and I had for each. I have talked about the trust and respect that Mike and I had for each other. I'll mention now the disagreements we had with each other.
I don't think it is healthy for two people to not have at least one disagreement. We were so healthy, we had many more than one. When he lived in the nursing home still, there wasn't much to disagree on. He loved seeing me walk in and he loved hearing me tell him of my life. He loved having me there to supplement his care. He loved having someone take his side when he had issues with the care he received. The only thing we argued over early on was with how I was treated and what I saw as his lack of "sticking up for me". I've mentioned his mother before and the issues she and I had. But there were some employees at the nursing home who were not only verbally abusive towards me, but one of them physically assaulted me in a hallway. Physically assaulted..... it's an accurate term, but just like when I used it when his mother was shoving me, I didn't feel threatened by this employee either. Mike would ask me to step out and walk down the hallway to the nurses station to tell them of whatever he needed. He would put his call light on too, but sending me meant he didn't have to wait for the aide to answer first. Any time I would tell someone of Mike's needs, face to face, they hated it. They hated it because they couldn't ignore it. There were some things that Mike would just have me do for him, like let the air out of his stomach. The vent would push air into his lungs, but depending on what he was doing (eating, usually) sometimes that air would get pushed into his stomach too. He already had a surgically placed hole in his abdomen that connected his stomach to the front of his abdomen and a conduit was created. They call it a stoma. To "burp" him, all you had to do was connect a syringe without the plunger in it to the tube placed in his stomach and leave it open until the trapped gas could get out. When Mike wanted this done it would sound like this... "please release the trapped gas as it is very painful". One day I had gone to the nurses station to get a syringe and the nurse behind the desk just went off on me. It became a huge deal over what care I could provide for him. Mike was willing to sign whatever they put in front of him to allow the facility to let me do these simple tasks, but they refused. This nurse felt so incredibly powerful by this decision that she became even more hostile towards me knowing she had the support of the facility. What created the argument between Mike and I was that even though he could see how she treated me, he wouldn't ask for a different nurse. I was pissed that I had to sit in his room by his side and watch her come into his room and laugh and carry on with him and watch him do the same with her. I felt it disrespectful. I told him that the reason I was being treated poorly was as a direct consequence from doing what he had asked me to do. She finally crossed a line big enough for Mike to finally speak out. While walking back to Mike's room, our paths crossed and as she is walking towards me in this very wide hallway, she shoulder checks me! I am totally serious. Again, I was so stifled there because of Mike's wishes that I not make things harder for him that I just let her. By the time I finished my walk to his room I was in a royal fit. I went off on him telling him that if he had shown solidarity with me earlier, she would have never felt she could get away with that behavior. I'm not the type to fight another woman in a hallway mind you, but I most definitely would not have just kept silent and kept walking, I did that for Mike. I was mad enough that I told him that if he was ok with how they were treating me there, then I didn't want to be there. That was what it took apparently..... he wrote a scathing letter to the director demanding better treatment for me. There was video evidence of her assault and she was reprimanded. But she was still assigned to him on occasion. I filed on my own behalf against her nursing license. I didn't follow up on any findings. But seriously, can you even imagine that this kind of thing would happen? It's crazy.
The other time was when one of his friends showed up to visit him at the nursing home and started hitting on me. It was all good fun until his hands started getting a little too wild. I kept looking over at Mike asking him if he was going to say anything and he would just shrug (he could still do that then). The guy finally crossed a line enough for me that I handled it myself. After they left I went after Mike with my anger that he didn't stand up for me. I would have never guessed what his response would be......he said "I kind of liked watching you get angry. I knew you could handle him yourself". His reply caught me so off guard that I just had to laugh.
That's kind of how all our arguments ended.
Once he had been living here awhile and the majority of his care was required of me, we started having arguments just out of frustration. I told you about some of those.... where we would sit in separate rooms and type out our argument.
Mike and I both had to learn how to let go of things. When it was my "bad", I would usually just say "want to kiss?" and that was the end of it. When it was his "bad", he was much more eloquent in his apology. His sleep schedule was so weird at times that some days I didn't get to sleep at all. When you aren't sleeping for over 24 hours it becomes real easy to notice some things. One of those "some things" was how often his communication with me was reduced to just telling me what his immediate needs were. I get it... I do..... it really sucks to HAVE to ask someone for every little thing you need. But when you're tired..... it really sucks being asked too. One day I answered his request by telling him that it had been 3 days since he has said anything to me besides telling me what he needed done. It took him another 2 days to respond to my "accusation" as he liked to call them. Here is his response ... not word for word... just jist but I'll put it in quotes anyway..... "At times my sleeping overlaps my awake times and I lose track of the days. I am very sorry that for 3 days I did not include you. Please forgive me. You are always in my thoughts and in my dreams, I guess I didn't realize that I didn't verbalize to you."
Ok..... now THAT'S an apology that seriously trumps my "want to kiss?" I don't miss the arguments but I miss the making up.
Tuesday, May 31, 2016
Thursday, May 26, 2016
Adam ..... the other one affected
Today I returned home from visiting with Adam, my son. He moved to South Carolina with his girlfriend to start a new job last year. He moved in June, Mike died in August. It was hard being without my two men. I had a wonderful time visiting with him for one evening and one day. He showed me around his favorite places and we went for a boat ride to look at the dolphins off of Hilton Head Island. For the majority of Adam's life I have been living paycheck to paycheck. He is very accustomed to doing without at Mom's house. We did a lot of free things, like metro parks. He complained a bit as he got older when I still wanted him to walk with me and he wanted to .... just not walk with me. So, as he is driving around the island, guess what he wanted to show me?..... the park that he goes to all the time! It made me smile from the inside out. Of course, this park had alligators. He pointed a couple out to me. One of them he thought looked like it was dead so he said that he was going to go a little closer and check.... to which I replied.. "Adam Richard Francis, don't you F...... dare!". He turned around, looked at me and said "well, I didn't miss that". LOL
After taking that 11 hour drive it also occurred to me that Adam has taken that same drive a couple of times now to be with his family. While Mike was in the hospital for that last week, I had been posting updates on Facebook. During that time I posted very little about what I was feeling. But one of my posts I did and Adam read it. It was after Mike's cardiac arrest and it was the first and the last time that I had ever been with him in the hospital when he wasn't conscious at all. I felt an extreme loneliness with his absence. I posted something like "I've never been so lonely with Mike". Adam read my post and after his shower, he told his girlfriend "I need to be with Mom, do you want to come with me?". My son, my wonderfully loving and caring and sensitive boy drove that 11 hour drive because he heard my despair.
I know he also wanted to say goodbye to Mike. The two of them took to each other like I had hoped. I mentioned that our relationship was not well received by his family, well, mine wasn't all that involved either. I don't think Adam was still living here when Mike first moved in, but he was here often. One time Adam messaged me and asked me to buy him alcohol, when I told him no because he wasn't old enough to drink, he said "just ask Mike'. So the two of them sat in Mike's room explaining to me how it was legal for Adam to drink in my house with me present..... I bought the alcohol. Adam hung out back in Mike's room more than anyone else who wasn't on the payroll. See, for Adam, being around someone paralyzed and vent dependent and slow to speech was no big deal.
Adam was raised seeing firsthand how his sisters had been treated by others. Most of that had been positive experiences, but he also saw how people would avoid them. He didn't want to be like them. Adam went to Easter Seals preschool with his sisters. He was part of the peer group there. He met all kinds of children who weren't typical. He has had a very unique life in that he has seen and learned early on that you make the most out of whatever ability you have and you don't focus on what you can't do. He has learned to accept people where they are and as they are. That's how it was for him with Mike too and Mike loved him for it.
Adam prefers not to be hands on with the care of his sisters, or probably anyone. He knows a lot of what it takes but he doesn't like the responsibility. When he was younger I taught him his numbers and a lot of basic math by having him prepare syringes with his sisters meds. They get all their medication and food through a tube inserted into a surgically made hole into their stomachs (g-tube). To this day if Adam were to give them their medication I bet you would hear him say to himself "now clamp your line"....
There have been a couple times in his life when he had to help me. I hated asking him because I knew he would feel responsible, but it couldn't always be avoided. Taylor had her surgery for her trach the day before Thanksgiving. On Christmas day it was just me with my girls (nurses in homecare often give themselves the day off for holidays) and Taylor was having a lot of difficulty with her vent. She was still getting used to it and as Mike explained to me, it feels different to have the breath given to you without your spontaneous control. Taylor was still taking her own breath, but the vent was providing support too. Taylor need to be taken off of her ventilator because she was having trouble clearing out her airway and coordinating her breathing. The fastest way to maintain an airway is to use an ambu bag ( that thing you see them squeeze during CPR) and alternate that support with suctioning..... very difficult to do with one person. I knew Adam was to come over some time that day but I didn't know when. Right when I had picked up the phone to call for a squad (which meant sending her into the hospital without me since I wouldn't have had a nurse for Mackenzie), Adam walks in. To me it was like a miracle.... to him, he was scared shitless. I quickly explained what I needed him to do and that there was NO WAY he could do it wrong. I told him that I take 100% responsibility for what needed to be done and how I just needed an extra set of hands. Together we were able to get her stable and the squad was not necessary. When we got her stable and I told him he could stop using the ambu bag because I was going to try to put her back on her vent, we both just stared at her hoping she was going to be ok. When he saw that she was ok he said "Mom, I was scared to death". Teaching moment..... "Me too, babe. But look what we did, we knew what was best for Taylor and we did it. If we weren't scared there is probably something wrong with us. Thanks for helping me save the life of your sister."
I've always included Adam in any teaching that needed to be done for his sisters. Even Taylor's trach tube change, I took him out of school for the day so that he could participate with the training with the nurse educator at the hospital. Actually, I took him out of school to run the annual community yard sales too. Sometimes life lessons trump classroom. And when it came to hiring or firing nurses, there wasn't any opinion I trusted more than his. I have fired nurses before just from Adam saying "Mom, something doesn't feel right". We were a team, we are a team. There isn't anyone else I trust more.
I know that moving to South Carolina has been great for Adam and I am very happy for him. But I know too that his misses his sisters ..... probably even more than me. :)
Getting used to our house without Mike and without Adam at pretty much the same time really sucks, but I know that Mike would be as proud of Adam as I am.
After taking that 11 hour drive it also occurred to me that Adam has taken that same drive a couple of times now to be with his family. While Mike was in the hospital for that last week, I had been posting updates on Facebook. During that time I posted very little about what I was feeling. But one of my posts I did and Adam read it. It was after Mike's cardiac arrest and it was the first and the last time that I had ever been with him in the hospital when he wasn't conscious at all. I felt an extreme loneliness with his absence. I posted something like "I've never been so lonely with Mike". Adam read my post and after his shower, he told his girlfriend "I need to be with Mom, do you want to come with me?". My son, my wonderfully loving and caring and sensitive boy drove that 11 hour drive because he heard my despair.
I know he also wanted to say goodbye to Mike. The two of them took to each other like I had hoped. I mentioned that our relationship was not well received by his family, well, mine wasn't all that involved either. I don't think Adam was still living here when Mike first moved in, but he was here often. One time Adam messaged me and asked me to buy him alcohol, when I told him no because he wasn't old enough to drink, he said "just ask Mike'. So the two of them sat in Mike's room explaining to me how it was legal for Adam to drink in my house with me present..... I bought the alcohol. Adam hung out back in Mike's room more than anyone else who wasn't on the payroll. See, for Adam, being around someone paralyzed and vent dependent and slow to speech was no big deal.
Adam was raised seeing firsthand how his sisters had been treated by others. Most of that had been positive experiences, but he also saw how people would avoid them. He didn't want to be like them. Adam went to Easter Seals preschool with his sisters. He was part of the peer group there. He met all kinds of children who weren't typical. He has had a very unique life in that he has seen and learned early on that you make the most out of whatever ability you have and you don't focus on what you can't do. He has learned to accept people where they are and as they are. That's how it was for him with Mike too and Mike loved him for it.
Adam prefers not to be hands on with the care of his sisters, or probably anyone. He knows a lot of what it takes but he doesn't like the responsibility. When he was younger I taught him his numbers and a lot of basic math by having him prepare syringes with his sisters meds. They get all their medication and food through a tube inserted into a surgically made hole into their stomachs (g-tube). To this day if Adam were to give them their medication I bet you would hear him say to himself "now clamp your line"....
There have been a couple times in his life when he had to help me. I hated asking him because I knew he would feel responsible, but it couldn't always be avoided. Taylor had her surgery for her trach the day before Thanksgiving. On Christmas day it was just me with my girls (nurses in homecare often give themselves the day off for holidays) and Taylor was having a lot of difficulty with her vent. She was still getting used to it and as Mike explained to me, it feels different to have the breath given to you without your spontaneous control. Taylor was still taking her own breath, but the vent was providing support too. Taylor need to be taken off of her ventilator because she was having trouble clearing out her airway and coordinating her breathing. The fastest way to maintain an airway is to use an ambu bag ( that thing you see them squeeze during CPR) and alternate that support with suctioning..... very difficult to do with one person. I knew Adam was to come over some time that day but I didn't know when. Right when I had picked up the phone to call for a squad (which meant sending her into the hospital without me since I wouldn't have had a nurse for Mackenzie), Adam walks in. To me it was like a miracle.... to him, he was scared shitless. I quickly explained what I needed him to do and that there was NO WAY he could do it wrong. I told him that I take 100% responsibility for what needed to be done and how I just needed an extra set of hands. Together we were able to get her stable and the squad was not necessary. When we got her stable and I told him he could stop using the ambu bag because I was going to try to put her back on her vent, we both just stared at her hoping she was going to be ok. When he saw that she was ok he said "Mom, I was scared to death". Teaching moment..... "Me too, babe. But look what we did, we knew what was best for Taylor and we did it. If we weren't scared there is probably something wrong with us. Thanks for helping me save the life of your sister."
I've always included Adam in any teaching that needed to be done for his sisters. Even Taylor's trach tube change, I took him out of school for the day so that he could participate with the training with the nurse educator at the hospital. Actually, I took him out of school to run the annual community yard sales too. Sometimes life lessons trump classroom. And when it came to hiring or firing nurses, there wasn't any opinion I trusted more than his. I have fired nurses before just from Adam saying "Mom, something doesn't feel right". We were a team, we are a team. There isn't anyone else I trust more.
I know that moving to South Carolina has been great for Adam and I am very happy for him. But I know too that his misses his sisters ..... probably even more than me. :)
Getting used to our house without Mike and without Adam at pretty much the same time really sucks, but I know that Mike would be as proud of Adam as I am.
Friday, May 20, 2016
musings
You know, sometimes I wonder why I am writing this Blog. Sometimes it feels like it just flows right out of me and sometimes I publish something and think what the hell did I just say.
I am an extremely private person. I have been ballroom dancing for 30 years and before Facebook, I bet none of these friends in the dance world would have even known I have children. When I have talked about them in the past I was always met with pity and it infuriated me, so I just stopped talking. Then when Mike came into my life I started opening up even more. I sometimes think now that I've become a self indulgent oversharer.
I feel like I still have a lot more to say though. I suppose if I knew that no one would ever read these, I would probably still write them. So what the heck..... I'll keep writing them.
I started out talking about Mike with these and he is definitely in my mind still when writing, but these next few will probably get into my own life and family a little more. I feel like that has been rattling in my head lately so I might as well put it out there.
So for those of you reading them, I hope you are reading them with my intent of just sharing what a wonderful and painful journey this has all been. And that even after death, I am still Mike's girl.
I am an extremely private person. I have been ballroom dancing for 30 years and before Facebook, I bet none of these friends in the dance world would have even known I have children. When I have talked about them in the past I was always met with pity and it infuriated me, so I just stopped talking. Then when Mike came into my life I started opening up even more. I sometimes think now that I've become a self indulgent oversharer.
I feel like I still have a lot more to say though. I suppose if I knew that no one would ever read these, I would probably still write them. So what the heck..... I'll keep writing them.
I started out talking about Mike with these and he is definitely in my mind still when writing, but these next few will probably get into my own life and family a little more. I feel like that has been rattling in my head lately so I might as well put it out there.
So for those of you reading them, I hope you are reading them with my intent of just sharing what a wonderful and painful journey this has all been. And that even after death, I am still Mike's girl.
Tuesday, May 17, 2016
Music and people
While Mike was still living in the nursing home and we were spending time together getting to know each other, one of the ways we learned about each other was through music. He learned that I will sing to pretty much anything he is playing whether I know the words or not and I learned that he has a lot of music stored that didn't have lyrics. ;) I meant that to sound funny. Truth is, he loved to hear me sing. Not that my voice is spectacular, but he loved this behavior of mine because it was me showing him who I was. I grew up hearing a LOT of gospel hymns. I know the words to a LOT of gospel hymns. Another favorite memory of mine was one evening I was sitting beside him doing homework and he was trying to get my attention. We would talk off and on but I kept telling him that I really needed to study. He found a station of music that had all these old southern gospel songs and started playing them. I couldn't resist..... I'm still trying to study but I kept singing along. Eventually he would wait until I started singing along and then change it to something else and wait until I started singing along to that one and then change it again. It took me awhile to catch on to what he was doing.... he was playing Name That Tune with me. Eventually I put my books aside and said "ok, bring it on". We spent the rest of the evening seeing how many songs I could sing along to. He always knew how to get my attention.
The last year of Mike's life was extremely challenging for us as a couple. I was providing most of his care and it was getting harder and harder for me to maintain any kind of life outside of his immediate needs. Gone were the days when he would encourage me to go out and do all these things and come back and tell him all about it. He wanted me with him. Things are always easier to see after the fact..... I see this now. I didn't see it then.
But back to the nursing home days of our relationship, he loved watching me put my makeup on and my high heeled shoes and go out. He would watch me intently and I would pretend I didn't know he was. That continued once we were home. He suggested things for me to do... ballet... different places to eat.... horseback riding..... It was fun to try things I wouldn't have thought to do on my own. Even though I was doing these things by myself, he was always there with me with my pictures. Every picture I posted on Facebook were me showing him my life outside of our home. Once the nursing became such a problem it was harder and harder for me to want to do these things. When a nurse came on I wanted to just curl up and sleep. Mike still wanted me to go out and do things. While I was out dancing, I met a guy who could see that I was often withdrawn and almost sad. He went out of his way to get me to talk to him and dance with him. Eventually we became friends and I kind of hid behind him. I mean this literally and figuratively. He was huge, when we would go out to dinners I could disappear. He would do all of the talking. I never had to say what I wanted or answer how my food was.... he took care of me. It was a comfort to me to have that kind of a companion. He turned out to be an asshole.... but for what I needed at the time, he helped me still maintain a life outside of my home.
There was another man I met at a festival. He is a singer and songwriter. We met at a washboard festival..... that Mike encouraged me to go to..... and from there we became Facebook friends. It wasn't anything more than hitting the occasional like on each others posts until about a year later when he messaged me and asked if his band could come to our house that year while they were in town for the same festival that I had previously met them. He had seen my posts and he knew that it would be hard for Mike and my girls to experience going out to hear live music and he wanted to bring it to them. It isn't just him, the entire band was so incredibly kind and generous. They did come to the house and we all loved it. We still watch the recordings. The last hospitalization for Mike I was listening to my music on my phone on shuffle. One of the songs from my friends group, Steel City Rovers, came up. It brought my friend to mind, his name is Ryan. My brother's name is Ryan so this Ryan became "Singer Ryan". I'll just call him Ryan here. I messaged him and told him of my struggle with my current situation and I asked him if he could be someone I could reach out to. He kept himself available to me pretty much around the clock. I would find out later that he sometimes was answering my messages during short breaks between sets on stage or when he was out with his friends or his girlfriend. He played a huge role in my sanity..... he still does.
After Mike died I received messages from a lot of his friends. Most I had never met but they had seen my Facebook posts and wanted to reach out to me. You've all had that, right? Right after major loss a lot of people reach out for support.... but then when it dies down and the loss sets in you feel lonely again? It was during that lull when one of Mike's good friends from law school messaged me and simply said that he was thinking of me and thinking of how different my life must be now that Mike was gone. I answered him back politely, just letting him know that I was happy to hear from Mike's friends and that I was doing ok. Then for some reason... totally out of character for me.... I admitted that I gave him the polite and easy answer. He responded with saying that he was hoping for the real one, the messy one. Since then he has been someone who stays in contact with me. I should mention that none of these relationship are of the romantic kind, just extremely kind people coming into my life at the right times. Mike's friend reminds me so much of Mike in how he talks. I am comforted by his messages even when they are not meant to be comforting. He also likes to challenge me a bit like Mike did. On multiple occasions his responses to my messages requires me to google a word or a phrase.... that's lawyers for you.... Recently he ended our conversation with vaya con Dios. Of course I had to google it..... it means go with God, btw. But the rest of the entire night that song was in my head.... as it probably is in yours now..... if it isnt'.... google it, it will be.
Back to music.... today... which is technically yesterday since I woke up in the middle of the night so it still feels like yesterday..... 3 different times today these particular songs came into my day. I have had a little more of a challenge to stay happy the past few days. Today/yesterday, I was driving around going nowhere and I had my phone on shuffle and Singer Ryan's song came on. Then later in the day when I was out driving around again (this time with a purpose) Adios and Vaya Con Dios started playing on the radio... it isn't a current song and it wasn't an oldies station. I should mention here that Mike's friend often encourages me to keep in touch with my emotions, to not try to shove them down but to let them out. Even though both of these songs had brought me back to a memory associated with Mike and these supportive men, it wasn't until I was at dinner that it all culminated to me crying in public .... which is something I don't do.
There is a song that many people have sung, but Leonard Cohen's live version was Mike's favorite.... Dance Me to the End of Love. Mike was tearful when that song was playing and as I am wiping his tears he mouths the words "You". He was telling me that this song made him think of me. So tonight as I am sitting at the Refectory expecting to enjoy a wonderful night of music and great food..... they play this song. I couldn't eat another bite, I just sat there and cried. I cried because all day long I think Mike was trying to get my attention with music until I finally heard him.
The last year of Mike's life was extremely challenging for us as a couple. I was providing most of his care and it was getting harder and harder for me to maintain any kind of life outside of his immediate needs. Gone were the days when he would encourage me to go out and do all these things and come back and tell him all about it. He wanted me with him. Things are always easier to see after the fact..... I see this now. I didn't see it then.
But back to the nursing home days of our relationship, he loved watching me put my makeup on and my high heeled shoes and go out. He would watch me intently and I would pretend I didn't know he was. That continued once we were home. He suggested things for me to do... ballet... different places to eat.... horseback riding..... It was fun to try things I wouldn't have thought to do on my own. Even though I was doing these things by myself, he was always there with me with my pictures. Every picture I posted on Facebook were me showing him my life outside of our home. Once the nursing became such a problem it was harder and harder for me to want to do these things. When a nurse came on I wanted to just curl up and sleep. Mike still wanted me to go out and do things. While I was out dancing, I met a guy who could see that I was often withdrawn and almost sad. He went out of his way to get me to talk to him and dance with him. Eventually we became friends and I kind of hid behind him. I mean this literally and figuratively. He was huge, when we would go out to dinners I could disappear. He would do all of the talking. I never had to say what I wanted or answer how my food was.... he took care of me. It was a comfort to me to have that kind of a companion. He turned out to be an asshole.... but for what I needed at the time, he helped me still maintain a life outside of my home.
There was another man I met at a festival. He is a singer and songwriter. We met at a washboard festival..... that Mike encouraged me to go to..... and from there we became Facebook friends. It wasn't anything more than hitting the occasional like on each others posts until about a year later when he messaged me and asked if his band could come to our house that year while they were in town for the same festival that I had previously met them. He had seen my posts and he knew that it would be hard for Mike and my girls to experience going out to hear live music and he wanted to bring it to them. It isn't just him, the entire band was so incredibly kind and generous. They did come to the house and we all loved it. We still watch the recordings. The last hospitalization for Mike I was listening to my music on my phone on shuffle. One of the songs from my friends group, Steel City Rovers, came up. It brought my friend to mind, his name is Ryan. My brother's name is Ryan so this Ryan became "Singer Ryan". I'll just call him Ryan here. I messaged him and told him of my struggle with my current situation and I asked him if he could be someone I could reach out to. He kept himself available to me pretty much around the clock. I would find out later that he sometimes was answering my messages during short breaks between sets on stage or when he was out with his friends or his girlfriend. He played a huge role in my sanity..... he still does.
After Mike died I received messages from a lot of his friends. Most I had never met but they had seen my Facebook posts and wanted to reach out to me. You've all had that, right? Right after major loss a lot of people reach out for support.... but then when it dies down and the loss sets in you feel lonely again? It was during that lull when one of Mike's good friends from law school messaged me and simply said that he was thinking of me and thinking of how different my life must be now that Mike was gone. I answered him back politely, just letting him know that I was happy to hear from Mike's friends and that I was doing ok. Then for some reason... totally out of character for me.... I admitted that I gave him the polite and easy answer. He responded with saying that he was hoping for the real one, the messy one. Since then he has been someone who stays in contact with me. I should mention that none of these relationship are of the romantic kind, just extremely kind people coming into my life at the right times. Mike's friend reminds me so much of Mike in how he talks. I am comforted by his messages even when they are not meant to be comforting. He also likes to challenge me a bit like Mike did. On multiple occasions his responses to my messages requires me to google a word or a phrase.... that's lawyers for you.... Recently he ended our conversation with vaya con Dios. Of course I had to google it..... it means go with God, btw. But the rest of the entire night that song was in my head.... as it probably is in yours now..... if it isnt'.... google it, it will be.
Back to music.... today... which is technically yesterday since I woke up in the middle of the night so it still feels like yesterday..... 3 different times today these particular songs came into my day. I have had a little more of a challenge to stay happy the past few days. Today/yesterday, I was driving around going nowhere and I had my phone on shuffle and Singer Ryan's song came on. Then later in the day when I was out driving around again (this time with a purpose) Adios and Vaya Con Dios started playing on the radio... it isn't a current song and it wasn't an oldies station. I should mention here that Mike's friend often encourages me to keep in touch with my emotions, to not try to shove them down but to let them out. Even though both of these songs had brought me back to a memory associated with Mike and these supportive men, it wasn't until I was at dinner that it all culminated to me crying in public .... which is something I don't do.
There is a song that many people have sung, but Leonard Cohen's live version was Mike's favorite.... Dance Me to the End of Love. Mike was tearful when that song was playing and as I am wiping his tears he mouths the words "You". He was telling me that this song made him think of me. So tonight as I am sitting at the Refectory expecting to enjoy a wonderful night of music and great food..... they play this song. I couldn't eat another bite, I just sat there and cried. I cried because all day long I think Mike was trying to get my attention with music until I finally heard him.
Saturday, May 14, 2016
Connections and Father Dean
When Mike and I met in person for the first time, I fed him dinner but we didn't really touch. I assumed that people probably randomly touched him since he was in a bed and had to look up at people all the time. So I didn't really touch his hand until we had known each other for awhile. But when I did, it was one of those moments that felt like you've felt that feeling before. It wasn't like sparks flying or that kind of thing..... it was an "I know you" kind of thing. With every experience you have in life, your brain makes a neuron connection. I believe that once that connection has been made, if it has a strong reaction with you, your body remembers it even if your mind doesn't seem to. Mike and I knew we had a mutual facebook friend in Jessika (she is how we met) but there were others too. One of my friends posted that he was performing in a fund raiser for Mike..... I had no idea that they knew each other. I had met this friend, Lee, years before I met Mike. Mike and Lee had known each other in law school. Mike mentioned to me once that he had taken ballroom dance lessons before. He took the lessons after his ALS diagnosis..... he took them from another friend of mine, Jeff. As unlikely as it seems to me that we would have ever met each other ..... I think we did. One night Mike was trying to decide what he would like to eat that night. He mentioned a place in Grandview that he liked going to .....it was the same place I always went. We figured this would have been around 2008. Not only that, but we both ordered the same thing all the time..... the polenta from Tratt on Grandview Ave. I'm convinced that he and I must have been there at the same time or walked past each other on Grandview Avenue or at the very least been at Comfest at the same time. There was some connection there that wasn't new. Or maybe it wasn't even in this lifetime..... I went to a pastlife regression seminar once where I was guided to revisit myself in 3 other lives. I did have 3 separate experiences that I relived as to whether they actually happened or if it was even me, who the heck really knows? But one of them I was standing overlooking a wide open space of green land watching the sun as it was rising and I was standing there with a man. We were both clothed in animal skin and we were warriors and we were holding hands, very united. Touching Mike's hand that first time reminded me of that memory in the seminar. Again.... who the heck knows... certainly not me.... but I am just retelling my experiences here. :)
The connection that Mike and I had made it easier for us to work together as a team. We could easily read each other. This came in handy at the hospital and was witnessed by Father Dean. Father Dean is a Priest who works for the hospital. He met Mike as a patient when Mike could still talk and get around some. They formed a very strong friendship. Father Dean loved bringing in guys in seminary school (that probably had a different name) to meet Mike. They would discuss Thomas for hours. When I met Father Dean for the first time, he really paid no attention to me. I wasn't offended, he was there for Mike. A few more hospitalizations and Father Dean gave me his number so that I could let him know when Mike was admitted. I'm not Catholic. I always respected Mike's religion and I would participate in the prayers. When Mike and I talked about Father Dean we spoke of him as one of those souls who you just know are something special. I told him that when Father Dean walks into the room, his energy/aura .... whatever.... fills up the room. If you open yourself up to what you feel permeating the room, you will feel peace. Even though Mike and I disagreed on where that energy came from, we both knew it was undeniable. That last week of Mike's life, Father Dean was there with me a lot. When the neurologist gave me his findings and asked what I would like to do for Mike, I looked over and Father Dean had just walked in the room. He saw the look on my face and took me to another room. It's the first time he and I had ever been alone. He let me cry, he let me talk, he let me remember, he let me philosophize (that's a word, right?). That's when he told me that he could see the connection between us and that if I was now feeling that I had lost that connection that I should trust that. He listened to me as I struggled with what dies first.... the mind or the body.... Once he knew that I had given up my POA and he knew why, he went out of his way to assure me that he too believed that Mike was no longer suffering. The day after our first talk alone, he came up to me bedside with Mike and said that he needed to apologize to me. He had a tear down his cheek when he told me that he felt like he had failed me the day before because he was not acting like a Priest, he was acting like a man who was losing a friend and that he wanted to apologize to me for not praying with me. Not sharing his faith, it hadn't bothered me at all. But it showed me again how much of an impact Mike had had on people who knew him. Father Dean is the reason I was able to keep my promise to Mike at the end. Because he had given me his phone number, he had mine. He called me and told me that even though he wasn't a medically trained man, it is his belief that if I wanted to be with Mike when his body has given up that I would need to be there soon. Father Dean knew what our connection was and what it meant to both of us. He wanted that for both of us..... that's why he called me. I will always be forever grateful to him.
The connection that Mike and I had made it easier for us to work together as a team. We could easily read each other. This came in handy at the hospital and was witnessed by Father Dean. Father Dean is a Priest who works for the hospital. He met Mike as a patient when Mike could still talk and get around some. They formed a very strong friendship. Father Dean loved bringing in guys in seminary school (that probably had a different name) to meet Mike. They would discuss Thomas for hours. When I met Father Dean for the first time, he really paid no attention to me. I wasn't offended, he was there for Mike. A few more hospitalizations and Father Dean gave me his number so that I could let him know when Mike was admitted. I'm not Catholic. I always respected Mike's religion and I would participate in the prayers. When Mike and I talked about Father Dean we spoke of him as one of those souls who you just know are something special. I told him that when Father Dean walks into the room, his energy/aura .... whatever.... fills up the room. If you open yourself up to what you feel permeating the room, you will feel peace. Even though Mike and I disagreed on where that energy came from, we both knew it was undeniable. That last week of Mike's life, Father Dean was there with me a lot. When the neurologist gave me his findings and asked what I would like to do for Mike, I looked over and Father Dean had just walked in the room. He saw the look on my face and took me to another room. It's the first time he and I had ever been alone. He let me cry, he let me talk, he let me remember, he let me philosophize (that's a word, right?). That's when he told me that he could see the connection between us and that if I was now feeling that I had lost that connection that I should trust that. He listened to me as I struggled with what dies first.... the mind or the body.... Once he knew that I had given up my POA and he knew why, he went out of his way to assure me that he too believed that Mike was no longer suffering. The day after our first talk alone, he came up to me bedside with Mike and said that he needed to apologize to me. He had a tear down his cheek when he told me that he felt like he had failed me the day before because he was not acting like a Priest, he was acting like a man who was losing a friend and that he wanted to apologize to me for not praying with me. Not sharing his faith, it hadn't bothered me at all. But it showed me again how much of an impact Mike had had on people who knew him. Father Dean is the reason I was able to keep my promise to Mike at the end. Because he had given me his phone number, he had mine. He called me and told me that even though he wasn't a medically trained man, it is his belief that if I wanted to be with Mike when his body has given up that I would need to be there soon. Father Dean knew what our connection was and what it meant to both of us. He wanted that for both of us..... that's why he called me. I will always be forever grateful to him.
Monday, May 9, 2016
While we are talking about nursing homes
There are some decisions that I have made in my life that were my best option at the time, but still just shitty choices to chose from. One of those was when my twins went to live in a facility during my divorce. You could never be harder on me or say anything worse to me than I have been to myself for that decision. It is also something that I never talk about. I thought I would now.
When I was in high school, I took a job as a home health aide. I was in someone's home taking care of their child who was dependent for all care..... just like mine ended up being. I had been babysitting newborn babies since I was 11 years old. Taking care of infants and disabled individuals was natural for me. After getting married I knew I wanted to have kids. I was 24 years old when I was pregnant with my twin girls. There had been no problems during the routine checkups until around 6 months when I started having premature contractions. I had to go on disability and bed rest and wear a monitoring belt. During a scheduled visit, I started showing symptoms of preeclampsia. My blood pressure was 200 over something and I was spilling 4+ protein in my urine. I needed to be induced right then. My husband didn't want to find another parking spot downtown so I walked from the doctors office to the hospital in house slippers (my feet wouldn't fit into anything else) in the snow. I was put on a mag drip and they started inducing me all the while making me lay on my left side. I didn't fully realize the risk I was in for myself, I was just nervous about having to give birth that day. My husband left the hospital to go back to work, leaving me there wondering if I was going to have a seizure and die. That was my first clue that I may have chosen the wrong life partner. He did return after for the birth but it was an 18 hour long process. After my girls were born they were taken straight away to a side room for evaluation and oxygen. I really only remember asking everyone why I didn't hear them crying. No one answered me. I also remember the doctor screaming for someone to give him packing material because I wouldn't stop bleeding. I didn't get to see or even touch my girls before they took them to the ICU. I was still at risk, but also still oblivious. The nurse brought one of the girls (to this day I don't know who) into my room via incubator and as I looked at her the nurse simply said "with kids like these we just don't know how they'll turn out. We'll just have to watch them during the night"..... kids like these.... I have despised that phrase ever since. My husband left shortly after.... he was tired. Now I am alone in the hospital having given birth to two girls who may not live through the night. I've never felt so abandoned. But, that's also where my inner strength started getting stronger.
I was in the hospital for 3 days. On day 4, Taylor was able to come home with me but Mackenzie needed to stay in the hospital. I was told that someone had hung the wrong IV fluid bag and that they were having a hard time controlling her blood sugar levels. Now I am home with just one of my children, my husband went to work and I didn't know when or if I would make it back into the hospital to see Mackenzie. It wasn't a week before Taylor went into the hospital for having a seizure where she had stopped breathing. She was admitted to the hospital and shortly after Mackenzie was transferred over to join her. Finally, I had both of my girls together. They didn't know what all was wrong with them, just that the EEG showed severe abnormalities. They were in the hospital for almost a month before I brought them home, both on monitors. I tried my best to keep everything normal. They both cried constantly, they both wouldn't keep any formula down (projectile vomiting with every feeding) and they both had seizures 100s of times a day. I was home alone trying to stay positive and happy and basically not let them die. It was very stressful.
Fast forward to one year later and now I am back in the hospital having just given birth to Adam. We had just bought a house and the day he was born was when my husband had everyone arranged to move us. This was before cell phones and we didn't have a phone line at the new house yet. By the time he came back up to the hospital I was ready to go home. I had my kitchen unpacked before Adam was 24 hours old. I was still just trying to stay normal. I didn't feel normal at all. My girls still didn't have a diagnosis, they hadn't met the typical milestones and I was now home alone with all 3 kids and no help. My husband still played in his golf league and went to work 12 hours a day ..... I was lucky to get a shower. I was so desperate for help that I started calling area churches for help. Finally, one young pastor called me and said that no one was available from his congregation but he would like to try to help. He came over once a day to feed Adam so that I could not feel guilty for just a little bit. Luckily Adam was a very easy and pleasant baby. My girls were still having a lot of health issues and a ton of seizures.
My marriage was no longer doing so great. We couldn't agree on anything. He didn't feel that anything was important enough for him to miss work, or miss a golf game or miss sleep. I didn't lose the weight from being pregnant. I went from barely 100 lbs and a little 24 inch waist to being fat and tired. My husband would kick me in bed while saying I was too fat and taking up too much room. He would push me while in the kitchen saying that I take up too much room. I was excited to have a huge corner tub until one day he saw me in it and said I looked like a beached whale. I was miserable. I needed help.
I knew from working in other people's homes while taking care of their handicapped children that there has to be some help for me too. Finally I found someone at the State level who knew what the Model 50 waiver program was (they had changed names a thousand times by now). We applied for services but were denied help. The reason given was that the community was meeting our needs. I went around to community organizations and asked for statements of determined needs and what they were able to provide. I took that information to the appeals court and won. It wasn't a real victory, it only meant that I was able to apply again. I applied again and was again denied, this time they said that my girls didn't meet ICFMR level of care. I still don't know what that is an acronym for.
I was literally losing my mind. I couldn't imagine how I was supposed to make our lives better. I finally broke down and found a facility where my girls could live so that they could get 24 hour care and I could get some help. I got a divorce. I didn't have anywhere to live, I didn't have a job, I didn't have any money, I didn't have any education and now I didn't have my kids. Adam spent most of his time at his grandma's house, I didn't have a place.
I went to the facility to spend time with my girls every single day. I had hoped that they could get the care they needed and when I finally got a job and a place to live that they could come back home to live with me. This is when I found out what goes on in those places. It was bad. Very bad. I met another mother and we looked out for each other's kids whenever we were there. I got a call from her one day telling me that Mackenzie was having a really bad seizure and they refused to call the squad or me. She was calling me from a payphone to tell me this. I called the squad and I rushed over. Kenzie ended up needing to be induced into a coma in an attempt to save her organs and brain from this horrible seizure (status epilepticus). After that I contacted a lady I had heard of who worked as a patient advocate. I begged her for help with getting services so that I could get my kids out of that hell hole. She was able to get me home care services that same week. In return, I took my little blonde twins to all her lobby meetings as a success story.
I fight hard for my kids. I will never give their care up to anyone else ever again. I didn't know it was going to be that way.
Mike knew all this about me...... many didn't..... until now...... I know part of what he loved about me was that he knew that as fierce as I was with my kids and as effective as I had become in standing up for their rights to medical treatment and care that I would do the same for him. I had proven myself to be exactly who he needed to make sure that he never ended up back in the same hell hole that he was in. He knew that I loved him just as fiercely as I loved my children.
When I was in high school, I took a job as a home health aide. I was in someone's home taking care of their child who was dependent for all care..... just like mine ended up being. I had been babysitting newborn babies since I was 11 years old. Taking care of infants and disabled individuals was natural for me. After getting married I knew I wanted to have kids. I was 24 years old when I was pregnant with my twin girls. There had been no problems during the routine checkups until around 6 months when I started having premature contractions. I had to go on disability and bed rest and wear a monitoring belt. During a scheduled visit, I started showing symptoms of preeclampsia. My blood pressure was 200 over something and I was spilling 4+ protein in my urine. I needed to be induced right then. My husband didn't want to find another parking spot downtown so I walked from the doctors office to the hospital in house slippers (my feet wouldn't fit into anything else) in the snow. I was put on a mag drip and they started inducing me all the while making me lay on my left side. I didn't fully realize the risk I was in for myself, I was just nervous about having to give birth that day. My husband left the hospital to go back to work, leaving me there wondering if I was going to have a seizure and die. That was my first clue that I may have chosen the wrong life partner. He did return after for the birth but it was an 18 hour long process. After my girls were born they were taken straight away to a side room for evaluation and oxygen. I really only remember asking everyone why I didn't hear them crying. No one answered me. I also remember the doctor screaming for someone to give him packing material because I wouldn't stop bleeding. I didn't get to see or even touch my girls before they took them to the ICU. I was still at risk, but also still oblivious. The nurse brought one of the girls (to this day I don't know who) into my room via incubator and as I looked at her the nurse simply said "with kids like these we just don't know how they'll turn out. We'll just have to watch them during the night"..... kids like these.... I have despised that phrase ever since. My husband left shortly after.... he was tired. Now I am alone in the hospital having given birth to two girls who may not live through the night. I've never felt so abandoned. But, that's also where my inner strength started getting stronger.
I was in the hospital for 3 days. On day 4, Taylor was able to come home with me but Mackenzie needed to stay in the hospital. I was told that someone had hung the wrong IV fluid bag and that they were having a hard time controlling her blood sugar levels. Now I am home with just one of my children, my husband went to work and I didn't know when or if I would make it back into the hospital to see Mackenzie. It wasn't a week before Taylor went into the hospital for having a seizure where she had stopped breathing. She was admitted to the hospital and shortly after Mackenzie was transferred over to join her. Finally, I had both of my girls together. They didn't know what all was wrong with them, just that the EEG showed severe abnormalities. They were in the hospital for almost a month before I brought them home, both on monitors. I tried my best to keep everything normal. They both cried constantly, they both wouldn't keep any formula down (projectile vomiting with every feeding) and they both had seizures 100s of times a day. I was home alone trying to stay positive and happy and basically not let them die. It was very stressful.
Fast forward to one year later and now I am back in the hospital having just given birth to Adam. We had just bought a house and the day he was born was when my husband had everyone arranged to move us. This was before cell phones and we didn't have a phone line at the new house yet. By the time he came back up to the hospital I was ready to go home. I had my kitchen unpacked before Adam was 24 hours old. I was still just trying to stay normal. I didn't feel normal at all. My girls still didn't have a diagnosis, they hadn't met the typical milestones and I was now home alone with all 3 kids and no help. My husband still played in his golf league and went to work 12 hours a day ..... I was lucky to get a shower. I was so desperate for help that I started calling area churches for help. Finally, one young pastor called me and said that no one was available from his congregation but he would like to try to help. He came over once a day to feed Adam so that I could not feel guilty for just a little bit. Luckily Adam was a very easy and pleasant baby. My girls were still having a lot of health issues and a ton of seizures.
My marriage was no longer doing so great. We couldn't agree on anything. He didn't feel that anything was important enough for him to miss work, or miss a golf game or miss sleep. I didn't lose the weight from being pregnant. I went from barely 100 lbs and a little 24 inch waist to being fat and tired. My husband would kick me in bed while saying I was too fat and taking up too much room. He would push me while in the kitchen saying that I take up too much room. I was excited to have a huge corner tub until one day he saw me in it and said I looked like a beached whale. I was miserable. I needed help.
I knew from working in other people's homes while taking care of their handicapped children that there has to be some help for me too. Finally I found someone at the State level who knew what the Model 50 waiver program was (they had changed names a thousand times by now). We applied for services but were denied help. The reason given was that the community was meeting our needs. I went around to community organizations and asked for statements of determined needs and what they were able to provide. I took that information to the appeals court and won. It wasn't a real victory, it only meant that I was able to apply again. I applied again and was again denied, this time they said that my girls didn't meet ICFMR level of care. I still don't know what that is an acronym for.
I was literally losing my mind. I couldn't imagine how I was supposed to make our lives better. I finally broke down and found a facility where my girls could live so that they could get 24 hour care and I could get some help. I got a divorce. I didn't have anywhere to live, I didn't have a job, I didn't have any money, I didn't have any education and now I didn't have my kids. Adam spent most of his time at his grandma's house, I didn't have a place.
I went to the facility to spend time with my girls every single day. I had hoped that they could get the care they needed and when I finally got a job and a place to live that they could come back home to live with me. This is when I found out what goes on in those places. It was bad. Very bad. I met another mother and we looked out for each other's kids whenever we were there. I got a call from her one day telling me that Mackenzie was having a really bad seizure and they refused to call the squad or me. She was calling me from a payphone to tell me this. I called the squad and I rushed over. Kenzie ended up needing to be induced into a coma in an attempt to save her organs and brain from this horrible seizure (status epilepticus). After that I contacted a lady I had heard of who worked as a patient advocate. I begged her for help with getting services so that I could get my kids out of that hell hole. She was able to get me home care services that same week. In return, I took my little blonde twins to all her lobby meetings as a success story.
I fight hard for my kids. I will never give their care up to anyone else ever again. I didn't know it was going to be that way.
Mike knew all this about me...... many didn't..... until now...... I know part of what he loved about me was that he knew that as fierce as I was with my kids and as effective as I had become in standing up for their rights to medical treatment and care that I would do the same for him. I had proven myself to be exactly who he needed to make sure that he never ended up back in the same hell hole that he was in. He knew that I loved him just as fiercely as I loved my children.
Sunday, May 8, 2016
The importance of autonomy
Having ALS stifles you in a lot of ways. Most of them obvious to everyone, but somethings are not as obvious. The one I am thinking of now is having choices. Choosing what to eat, what to wear, aspects of your care, appointments, visitors..... all of these things are denied you when you live in a facility. There is the facade of having choices, the facility will give you a menu for the week for you to choose from but it probably won't be what you get. When we want to visit with our friends we call them and arrange a time and place, we can leave when we want, we can cancel if we don't feel well.... that goes away in the nursing home. I've seen Mike fake being asleep when he is done with visiting with people..... he's done it with me even. lol
When it was closer to the time for Mike to move in with us, there was a lot to do. I had to move out of my room, we had to put in a double door to the outside, we had to arrange for supplies and nurses, but the most fun was watching Mike pick out the colors of his room! I don't even know if he truly cared all that much but I brought in a ton of paint chips and we just started narrowing them down. We even changed the ceiling color since that is what he could see more of than the walls. He picked out everything for his new room. I am not great at painting but even that was fun for me because I could send him videos of my progress. It was a project we could share to add to our excitement of his arrival.
We hit a few snags with the supplier for his ventilator supplies and then the hiccup with his family, but when the State caseworker came in his room at the nursing home and asked what day he wanted to move out we were beyond excited!!
Mike had a really nice motorized wheelchair but he never used it. Before going home with him and that huge wheelchair I wanted to make sure it was of good integrity and good fit. He was so anxious about being moved into his chair (from the time the dropped him, he refused transfers) that I arranged for 2 physical therapists, 1 nurse, 2 aides and a respiratory therapist to be in the room to do the transfer. I was even able to get an outside company in to evaluate his wheelchair. I was so happy that he agreed to give it a try because it meant that he could leave his bedroom and hang out in the livingroom with us or sit on the back deck with me looking at the stars.... but it didn't end up that way. He did get in his chair that day and the chair was a good fit and in working order... but he refused to ever get into it again. He wouldn't leave his bed..... ever. I was disappointed. I wanted his wheelchair to be an asset to his daily life but it ended up stored in the garage until he died. His refusal limited a lot of what we could do together. He also was on 5 liters of oxygen. His oxygen saturation levels always stayed above 96 so I was hopeful that we could titrate his oxygen requirement down since 5 liters would definitely limit him being away from home. That rate would empty a portable oxygen tank in under an hour. We tried, but he would start feeling short of breathe at 3 liters, so we never were able to reduce him from the 5 liters. The front bedroom he was in had a lot of great natural sunlight but he would never let me open the blinds. It made it nearly impossible to see his computer screen and squinting was difficult for him. I tried sunglasses for him, but he hated wearing them. So he stayed in his room with the blinds drawn for the 2 years he was here.
Because of his reluctance to be moved, he had developed bedsores while living in the nursing home. It took me almost an entire year to get his backside looking healthy again. They are an infection risk to say the least but they also hurt him causing him to ask for more pain meds. Speaking of meds though, I met with his doctor before leaving the nursing home and between the 3 of us we had a schedule of how to wean him from some of the meds he was taking. We also were able to switch his blood thinner medication to one that didn't require checking levels all the time.
The day of the actual move..... when he got settled into his own bed, in his own room, painted in colors that he chose, wearing something besides a hospital gown that he picked out, living with his girlfriend in our own house....... he was beaming. I have a picture of him from right after he moved in and even with the pain of the transportation and moving him around, you can still see the relief and joy in his face. It's easily one of my favorite memories.
When it was closer to the time for Mike to move in with us, there was a lot to do. I had to move out of my room, we had to put in a double door to the outside, we had to arrange for supplies and nurses, but the most fun was watching Mike pick out the colors of his room! I don't even know if he truly cared all that much but I brought in a ton of paint chips and we just started narrowing them down. We even changed the ceiling color since that is what he could see more of than the walls. He picked out everything for his new room. I am not great at painting but even that was fun for me because I could send him videos of my progress. It was a project we could share to add to our excitement of his arrival.
We hit a few snags with the supplier for his ventilator supplies and then the hiccup with his family, but when the State caseworker came in his room at the nursing home and asked what day he wanted to move out we were beyond excited!!
Mike had a really nice motorized wheelchair but he never used it. Before going home with him and that huge wheelchair I wanted to make sure it was of good integrity and good fit. He was so anxious about being moved into his chair (from the time the dropped him, he refused transfers) that I arranged for 2 physical therapists, 1 nurse, 2 aides and a respiratory therapist to be in the room to do the transfer. I was even able to get an outside company in to evaluate his wheelchair. I was so happy that he agreed to give it a try because it meant that he could leave his bedroom and hang out in the livingroom with us or sit on the back deck with me looking at the stars.... but it didn't end up that way. He did get in his chair that day and the chair was a good fit and in working order... but he refused to ever get into it again. He wouldn't leave his bed..... ever. I was disappointed. I wanted his wheelchair to be an asset to his daily life but it ended up stored in the garage until he died. His refusal limited a lot of what we could do together. He also was on 5 liters of oxygen. His oxygen saturation levels always stayed above 96 so I was hopeful that we could titrate his oxygen requirement down since 5 liters would definitely limit him being away from home. That rate would empty a portable oxygen tank in under an hour. We tried, but he would start feeling short of breathe at 3 liters, so we never were able to reduce him from the 5 liters. The front bedroom he was in had a lot of great natural sunlight but he would never let me open the blinds. It made it nearly impossible to see his computer screen and squinting was difficult for him. I tried sunglasses for him, but he hated wearing them. So he stayed in his room with the blinds drawn for the 2 years he was here.
Because of his reluctance to be moved, he had developed bedsores while living in the nursing home. It took me almost an entire year to get his backside looking healthy again. They are an infection risk to say the least but they also hurt him causing him to ask for more pain meds. Speaking of meds though, I met with his doctor before leaving the nursing home and between the 3 of us we had a schedule of how to wean him from some of the meds he was taking. We also were able to switch his blood thinner medication to one that didn't require checking levels all the time.
The day of the actual move..... when he got settled into his own bed, in his own room, painted in colors that he chose, wearing something besides a hospital gown that he picked out, living with his girlfriend in our own house....... he was beaming. I have a picture of him from right after he moved in and even with the pain of the transportation and moving him around, you can still see the relief and joy in his face. It's easily one of my favorite memories.
Saturday, May 7, 2016
Life in a nursing home
Mike had been living in the nursing home (one of the few in this area who accept ventilator patients) for a few months before we met. I'm sure there must be some nice ones out there, but this was not one of them. The people assigned to care for Mike had such huge language barriers and he had such complicated needs that the amount of stress Mike was forced to live under tired him. He slept alot. Another reason for sleeping a lot is the practice adopted by a lot of facilities of giving people multiple psychotropic medications (to make their lives less stressful there, of course). These medications were listed as PRN, in other words... not to be given unless he asks for them. The State asks facilities that accept payment from them to operate with a certain standard of care. One of those things would be to make a visual contact with a patient with a certain interval of time. For a number of reasons, this is rarely done and impossible to prove. Well, nearly impossible. Mike had an issue with a nurse who had given him so much medication that he could barely hold his head up, let alone type. She silenced him.... most likely to make for an easier shift for herself and others. In his impaired state, he was able to message me and ask for help. I went up to the nursing home as soon as I could and told them that Mike wanted to see his medication chart. There is a lot involved in what all we had to do to get this issue resolved. This is one time when I wanted to call the police, but Mike was not wanting to because of his very real fear of retaliation. Our first goal was just to keep him safe, so I stayed until the drugs left his system. After he had his strength back that's when he went about proving it happened. Between the two of us, we WERE able to prove that it not only happened to him, but to all the residents on that hall. The nurse was fired.
After that event the direct care workers were hostile. The administration heard their complaints and made a stipulation. They decided that whenever Mike was to receive any care from their staff, I was to step out of the room. Sounds absurd, right? We complied until we could present enough of a case to get them to change their "rule". Eventually we did but then they just started messing with him other ways. He was assigned direct care people who were the newest hired, they gave him roomates with behavior issues and at time infectious. So if you ever saw a post where Mike was in fear for his life at that nursing home..... it was real.
They dropped him to the floor once, they refused him his food, they gave him cold and inedible food when he complained.
I can think of several times when Mike would have been in jeopardy there had I not been there (outside of the times that he asked me to come). Once, while I was at school less than 5 miles away from him, I knew that the power had gone out. I left class to go check on him and sure enough when I walked into his room his eyes were huge with fear. His ventilator was plugged into the generator but his bed wasn't. He used an air mattress bed. When the power went out, the bed deflated. The rales were up so he wouldn't have made it to the floor but he was scared and hurting and had no way to communicate. He could no longer reach his blowtube (he operated the call light with his mouth) or his computer. I didn't realize all of this when I walked into his room, but I am quick to figure things out. I swapped the ventilator for the bed knowing the vent had a backup battery and max inflated his bed. I rotated the outlet until the power returned.
Another time I was in his room and his ventilator started alarming. Taylor (my daughter) is on the same ventilator as Mike and I know it well. When Taylor was put on her ventilator I had 3 days before she was to come home to learn everything I could so that I could take care of her at home. I read the entire manual, I watched youtube videos, I questioned every respiratory therapist on common alarms and what they mean. Not only did that knowledge keep my daughter safe at home when I had to train her nurses, but this day at the nursing home, it kept Mike alive. This particular alarm isn't from a reading from the patient, it was from an internal error within the machine. It rarely happens, but I remember reading what to do about it. I also knew that if I let Mike know that his machine that was keeping him alive was about to shut off, he would have a panic attack which would actually require more support from the ventilator. I excused myself and got the respiratory therapist. He was not familiar with the alarm code and given my history with the nursing home, he wasn't quick to react based on my opinion of what needed to be done. His idea was to turn the machine off and then back on. I knew this wouldn't work but there was no way to convince him and I didn't want to upset Mike. I did, however, insist on making sure he knew where the ambu bag was before he started and to hook it up to an oxygen tank. I was right, the therapist panicked, I bagged Mike so that he could go get help. His nurse came in and we took turns bagging him until a replacement ventilator could be found. Once all the excitement had settled and Mike was again able to be sustained by machine, he just looked at me and grinned and mouthed "not dead, yet. thanks". Kind of morbid humor, but it suited us. That became another one of our sayings whenever I intervened on his behalf whether at home or in the hospital, he would say "not dead yet, thanks".....
After that event the direct care workers were hostile. The administration heard their complaints and made a stipulation. They decided that whenever Mike was to receive any care from their staff, I was to step out of the room. Sounds absurd, right? We complied until we could present enough of a case to get them to change their "rule". Eventually we did but then they just started messing with him other ways. He was assigned direct care people who were the newest hired, they gave him roomates with behavior issues and at time infectious. So if you ever saw a post where Mike was in fear for his life at that nursing home..... it was real.
They dropped him to the floor once, they refused him his food, they gave him cold and inedible food when he complained.
I can think of several times when Mike would have been in jeopardy there had I not been there (outside of the times that he asked me to come). Once, while I was at school less than 5 miles away from him, I knew that the power had gone out. I left class to go check on him and sure enough when I walked into his room his eyes were huge with fear. His ventilator was plugged into the generator but his bed wasn't. He used an air mattress bed. When the power went out, the bed deflated. The rales were up so he wouldn't have made it to the floor but he was scared and hurting and had no way to communicate. He could no longer reach his blowtube (he operated the call light with his mouth) or his computer. I didn't realize all of this when I walked into his room, but I am quick to figure things out. I swapped the ventilator for the bed knowing the vent had a backup battery and max inflated his bed. I rotated the outlet until the power returned.
Another time I was in his room and his ventilator started alarming. Taylor (my daughter) is on the same ventilator as Mike and I know it well. When Taylor was put on her ventilator I had 3 days before she was to come home to learn everything I could so that I could take care of her at home. I read the entire manual, I watched youtube videos, I questioned every respiratory therapist on common alarms and what they mean. Not only did that knowledge keep my daughter safe at home when I had to train her nurses, but this day at the nursing home, it kept Mike alive. This particular alarm isn't from a reading from the patient, it was from an internal error within the machine. It rarely happens, but I remember reading what to do about it. I also knew that if I let Mike know that his machine that was keeping him alive was about to shut off, he would have a panic attack which would actually require more support from the ventilator. I excused myself and got the respiratory therapist. He was not familiar with the alarm code and given my history with the nursing home, he wasn't quick to react based on my opinion of what needed to be done. His idea was to turn the machine off and then back on. I knew this wouldn't work but there was no way to convince him and I didn't want to upset Mike. I did, however, insist on making sure he knew where the ambu bag was before he started and to hook it up to an oxygen tank. I was right, the therapist panicked, I bagged Mike so that he could go get help. His nurse came in and we took turns bagging him until a replacement ventilator could be found. Once all the excitement had settled and Mike was again able to be sustained by machine, he just looked at me and grinned and mouthed "not dead, yet. thanks". Kind of morbid humor, but it suited us. That became another one of our sayings whenever I intervened on his behalf whether at home or in the hospital, he would say "not dead yet, thanks".....
Tuesday, May 3, 2016
My biggest support came from an unlikely person
I have mentioned that our relationship was not well received by his family. I have heard everything from "get your head out of your ass, Mike. she's just using you" to "she must have some kind of Nightingale Complex" along with the every popular "you think you've met the bitch of the family? you haven't seen anything yet. just wait until something happens to him, I will make your life hell".... pleasant, right? That was just family. From friends it was "Mike, we are still working on getting you in to the Chelsea House".... every single time I saw them. No matter how many times Mike would tell everyone that living with me was what he wanted, they never stopped.
I mentioned the ESPN interview..... I'm not the only one who took note of what he said in his interview. A group of wonderful men whom Mike had played football with at Harvard had also seen the interview. John, Neal and Greg organized some fund raising and established a Trust for Mike's benefit. They paid for a generator to be installed at the house. That was a huge relief for me. Imagine a loss of power with just me to try to breathe for 2 people, it would have been a disaster. They paid for incidental expenses for Mike such as food gift cards and online gift cards for Mike to use for his entertainment. When things were getting worse and worse at the nursing home, they arranged for an independent agency to have an aide with him during the night. And they paid for this HUGE apple computer. Mike was infatuated with that computer. He was so excited to have it all set up. He went from a normal sized laptop to this screen large enough that you couldn't see him at all if you were standing at the foot of his bed. His eyesight wasn't the greatest, he was getting older after all..... and this larger screen made it so much easier for him to read and do things. He truly "lived" in his computer. It kept him connected to people, events, stimulating conversation (let's face it.... I wasn't that much of a challenge for him there) and movies. They even researched and arranged for setup of the latest in eyegaze technology for Mike to try. These 3 men were kind and helpful and resourceful. Mike and I both were so very grateful for everything they did.
But when it came to me..... just me..... there wasn't a lot of support. The nurses hired for my girls went above and beyond with keeping my girls taken care of. Eventually some of them even became nurses for Mike too when we had run out of options. Just like I tried to avoid being his nurse (I wasn't for the first year he lived here) because it was important to me to just be his girlfriend, I also didn't want the nurses for my girls to have to divide their attention away from my girls. Not only that but some of the organisms living in Mike's body were contagious and my girls would have been at risk of cross contamination. I even did his laundry separate. The laundry protocol was established after reading the notes from a speech given by one of the Trust guys who owns a company and gives lectures on laundry in facilities and such (and I just way simplified that...). A lot of people who I thought would have been supportive of me weren't. I had the feeling that they felt that I brought all this on myself and I should just deal with it. I never talked to them about my disappointment. I'm sure you get that, right? Sometimes it's just easier to smile and ignore the hurt than to risk confrontation.
The one person who turned out to be the biggest help for me with Mike was one of his law school buddies from OSU. Mike had put him in charge of a lot of things in his life and he trusted him. However, he was also the person Mike complained the most about. Have you ever been put on bedrest by a doctor and time seems to have no meaning anymore? Eventually everything seems to be exaggerated.... like you ask your spouse for something and waiting for them to do it can seem like an eternity. That's how it was for Mike when he needed something done by his friend. To Mike it seemed like he never did things, but to his friend it seemed like he was always doing things. Having not met him yet, I took on Mike's opinion of him which was that he was slow to respond to Mike's needs. As a consequence, we did not get along at all. It is safe to say that we barely tolerated one another. It wasn't until the first hospitalization that Mike had after moving in, that I realized who I can count on and it was this same friend who Mike complained constantly about, Steve. Steve is who would come to the hospital ..... every single time. Steve is who sat beside me when the doctor said that there was nothing further they would do for him. Steve is who mediated those conversations so I didn't need to talk and risk getting kicked out of the hospital. Steve is the only person who had literally kept Mike alive by using an ambu bag during an outing (before I met him), besides me. Steve carried him up steps when his legs stopped working. Steve handled all kinds of things with his Mother and brother. Eventually it came to where I was begging for someone to stay with Mike so that I could be with my daughter during an ICU stay. Steve came and stayed, he even stayed after I got home so that I could sleep. We went from barely tolerating one another to him giving me a hug in my kitchen telling me that I look exhausted (and trust me, he is not a touchy feely kind of guy) Mike continued to take issue with Steve on things that I didn't know anything about, but to me Steve proved himself to be willing to be there for us. No one wants to be around a dying man, Mike and I were lonely together. I was glad to have one person who would sit beside me in the hospital, someone who loved Mike just as much as I did.
I had to come back to this one and update it. I checked my emails and saw that I received one from Neal. He was letting me know that as per Mike's wishes the remaining funds from the Trust are now being used to help other Harvard athletes afflicted with ALS and other neurological diseases. He says that they are getting close to establishing the Mike Vollmer Fund at the Harvard Varsity Club using remaining funds of Mike's original Trust as seed money for the Harvard Varsity Club to continue raising funds to benefit those diagnosed. How wonderful to see the Trust to continue on to help other people. Mike would be so pleased.
I mentioned the ESPN interview..... I'm not the only one who took note of what he said in his interview. A group of wonderful men whom Mike had played football with at Harvard had also seen the interview. John, Neal and Greg organized some fund raising and established a Trust for Mike's benefit. They paid for a generator to be installed at the house. That was a huge relief for me. Imagine a loss of power with just me to try to breathe for 2 people, it would have been a disaster. They paid for incidental expenses for Mike such as food gift cards and online gift cards for Mike to use for his entertainment. When things were getting worse and worse at the nursing home, they arranged for an independent agency to have an aide with him during the night. And they paid for this HUGE apple computer. Mike was infatuated with that computer. He was so excited to have it all set up. He went from a normal sized laptop to this screen large enough that you couldn't see him at all if you were standing at the foot of his bed. His eyesight wasn't the greatest, he was getting older after all..... and this larger screen made it so much easier for him to read and do things. He truly "lived" in his computer. It kept him connected to people, events, stimulating conversation (let's face it.... I wasn't that much of a challenge for him there) and movies. They even researched and arranged for setup of the latest in eyegaze technology for Mike to try. These 3 men were kind and helpful and resourceful. Mike and I both were so very grateful for everything they did.
But when it came to me..... just me..... there wasn't a lot of support. The nurses hired for my girls went above and beyond with keeping my girls taken care of. Eventually some of them even became nurses for Mike too when we had run out of options. Just like I tried to avoid being his nurse (I wasn't for the first year he lived here) because it was important to me to just be his girlfriend, I also didn't want the nurses for my girls to have to divide their attention away from my girls. Not only that but some of the organisms living in Mike's body were contagious and my girls would have been at risk of cross contamination. I even did his laundry separate. The laundry protocol was established after reading the notes from a speech given by one of the Trust guys who owns a company and gives lectures on laundry in facilities and such (and I just way simplified that...). A lot of people who I thought would have been supportive of me weren't. I had the feeling that they felt that I brought all this on myself and I should just deal with it. I never talked to them about my disappointment. I'm sure you get that, right? Sometimes it's just easier to smile and ignore the hurt than to risk confrontation.
The one person who turned out to be the biggest help for me with Mike was one of his law school buddies from OSU. Mike had put him in charge of a lot of things in his life and he trusted him. However, he was also the person Mike complained the most about. Have you ever been put on bedrest by a doctor and time seems to have no meaning anymore? Eventually everything seems to be exaggerated.... like you ask your spouse for something and waiting for them to do it can seem like an eternity. That's how it was for Mike when he needed something done by his friend. To Mike it seemed like he never did things, but to his friend it seemed like he was always doing things. Having not met him yet, I took on Mike's opinion of him which was that he was slow to respond to Mike's needs. As a consequence, we did not get along at all. It is safe to say that we barely tolerated one another. It wasn't until the first hospitalization that Mike had after moving in, that I realized who I can count on and it was this same friend who Mike complained constantly about, Steve. Steve is who would come to the hospital ..... every single time. Steve is who sat beside me when the doctor said that there was nothing further they would do for him. Steve is who mediated those conversations so I didn't need to talk and risk getting kicked out of the hospital. Steve is the only person who had literally kept Mike alive by using an ambu bag during an outing (before I met him), besides me. Steve carried him up steps when his legs stopped working. Steve handled all kinds of things with his Mother and brother. Eventually it came to where I was begging for someone to stay with Mike so that I could be with my daughter during an ICU stay. Steve came and stayed, he even stayed after I got home so that I could sleep. We went from barely tolerating one another to him giving me a hug in my kitchen telling me that I look exhausted (and trust me, he is not a touchy feely kind of guy) Mike continued to take issue with Steve on things that I didn't know anything about, but to me Steve proved himself to be willing to be there for us. No one wants to be around a dying man, Mike and I were lonely together. I was glad to have one person who would sit beside me in the hospital, someone who loved Mike just as much as I did.
I had to come back to this one and update it. I checked my emails and saw that I received one from Neal. He was letting me know that as per Mike's wishes the remaining funds from the Trust are now being used to help other Harvard athletes afflicted with ALS and other neurological diseases. He says that they are getting close to establishing the Mike Vollmer Fund at the Harvard Varsity Club using remaining funds of Mike's original Trust as seed money for the Harvard Varsity Club to continue raising funds to benefit those diagnosed. How wonderful to see the Trust to continue on to help other people. Mike would be so pleased.
Monday, May 2, 2016
A letter sent to a friend after Mike died
Mike had a friend, Jim, who was a physician. I met Jim at the nursing home but he did not introduce himself as a doctor. Mike had mentioned to him that I was a massage therapist and that we were working on getting the swelling down on his feet. At the time, Mike's hands and feet were all swollen to probably twice their normal size and were opaque kind of like cooked fish. Jim met me out in the hallway and started asking me questions about Mike... specifically about how I was addressing the swelling. Remember.... I didn't know he was a doctor..... I explained to him what I had in mind and that without the list of his medications or much knowledge of preexisting conditions that I was using very light touch in the direction of the heart and seeing how he responded and would go from there. I could tell by how he was questioning me that he had a medical background. He would ask.... couldn't you just raise his arm and let the fluid drain .... the answer is no, btw.... but I explained to him why that would be too taxing on his heart. Again..... I didn't know he was a doctor! I found out later from Mike that Jim really like me and thought I was good for him.
Jim was someone Mike would want me to call when he was in the hospital. He couldn't always come by but he always called me and kept up on his condition. After Mike died, Jim had called me a few times but I ignored his call because talking to people was just too difficult. I finally sat down and wrote him this letter. He deserved an explanation. He called me after he read my letter and I will always remember the words of comfort he gave me. I am going to copy my letter to him here. Again, this is my story. My experiences. I can't seem to get the letter pasted where I want it to so you may need to scroll down to see it.
Jim was someone Mike would want me to call when he was in the hospital. He couldn't always come by but he always called me and kept up on his condition. After Mike died, Jim had called me a few times but I ignored his call because talking to people was just too difficult. I finally sat down and wrote him this letter. He deserved an explanation. He called me after he read my letter and I will always remember the words of comfort he gave me. I am going to copy my letter to him here. Again, this is my story. My experiences. I can't seem to get the letter pasted where I want it to so you may need to scroll down to see it.
|
9/19/15
 |
Hi Jim,
I
am sorry I keep missing your calls. It is in part because talking to
people who know and care about Mike is still challenging for me. I cry
too easily and then no one can understand what I am saying.
| |||||||||||
Real time...... right now
So here it is 4 am and I've been awake the past hour. I'm awake because I had another nightmare reliving the cardiac resuscitation effort made on Mike that morning. I wake up with tears down my face after hearing my voice saying "it's ok, Mike, I'm right here". I have said that phrase to him countless times over the years and it had always been ok. This time it wasn't. It wasn't ok at all. I never got him back after that. His pulse returned but he never did.
For being such a smart girl, how could I have thought that the man I fell in love with who had a terminal diagnosis would never die? Mike was such a strong willed fighter. Together we had made it through so much. I still have the messages he sent me from previous hospitalizations where he tells me that he's in so much pain that he wants to die but he can't stand the thought of leaving me. Have you ever been in that situation before? I hadn't. I hated the pain that he was in but I didn't want to lose him either. How do you love someone enough to tell them it's ok to die if they need to? I would go nose to nose with him and tell him that he will never lose me, even after death. But if he wanted to live and fight that I will never leave his side. I would ask them to call in pain specialists, I would call for the ethics committee to fight for his right to treatment, I would call his Priest. I would stay by his side as much as I could, speaking for him, caring after him. I had hospital directors threatening me, I had countless "meetings" with charge nurses regarding complaints nurses had of me. I kept all of this that I could from Mike because he needed every bit of strength that he had to stay alive. He needed me to help him stay alive despite the hospital efforts to let him die from infection, calling it an "ethical decision". "You wouldn't want him to suffer would you".... they'd say.
This time, the time he didn't make it, I had to leave him. Hell, I couldn't even go in with him from the house because the girls didn't have a nurse. I got there as soon as I could, I left him at 2am with him still talking to me. I returned at 10am and he had his cardiac arrest at 10:30am. For half an hour I watched them brutally (but necessarily) try to revive him. After years of telling people not to lay him flat because it displaces all his fluids and he chokes on his own stomach contents, that is what is going through my mind. Not oh my god I hope he doesn't die, it was they are hurting him, he is going to be so pissed. Messed up, right? But when you spend so many years speaking up for him, it doesn't just shut off. In order for him to get good care anywhere it was essential that people liked him. Every reason that people had for not liking me was because I was taking that from him. I became what he needed to say and they hated my presence because of it, but it got him the care he needed.
These posts are my way of still trying to maintain my own happiness. When Mike first died I was almost paralyzed with fear that I will miss something and my girls will die. With Taylor being on a ventilator and her care being so similar to Mike's, the first time I was to care for her by myself after his death I was sobbing so hard I could barely see to do simple tasks. I never thought he would die, so how will I keep my own kids from dying. I transitioned from those thoughts to going to the cemetery to get out of the house. I was going every other day. One day I wasn't able to go because a nurse called off and my first thought was, he's going to be disappointed. That's when I knew that I was not in a healthy place. I started writing these blogs to replace going to the cemetery so often. It's helping. But I'm now trying to remember that this is MY story. I own my own words and thoughts. I'm still so careful of keeping the peace for Mike's sake that I forget that there is no peace to keep anymore. He's dead, his mother is dead. Why can't I just say she was the biggest bitch to me? Why am I still so careful with what he would think? He isn't here. Even when I read some of the posts I've made I noticed that I still will slip into present tense when I talk of him, I don't correct it.
I know things will get easier for me. I know that the nightmares will stop. I know that eventually I will love someone again, maybe. I know that I take excellent care of my kids. I know it isn't my fault that he died. I'm ok.
For being such a smart girl, how could I have thought that the man I fell in love with who had a terminal diagnosis would never die? Mike was such a strong willed fighter. Together we had made it through so much. I still have the messages he sent me from previous hospitalizations where he tells me that he's in so much pain that he wants to die but he can't stand the thought of leaving me. Have you ever been in that situation before? I hadn't. I hated the pain that he was in but I didn't want to lose him either. How do you love someone enough to tell them it's ok to die if they need to? I would go nose to nose with him and tell him that he will never lose me, even after death. But if he wanted to live and fight that I will never leave his side. I would ask them to call in pain specialists, I would call for the ethics committee to fight for his right to treatment, I would call his Priest. I would stay by his side as much as I could, speaking for him, caring after him. I had hospital directors threatening me, I had countless "meetings" with charge nurses regarding complaints nurses had of me. I kept all of this that I could from Mike because he needed every bit of strength that he had to stay alive. He needed me to help him stay alive despite the hospital efforts to let him die from infection, calling it an "ethical decision". "You wouldn't want him to suffer would you".... they'd say.
This time, the time he didn't make it, I had to leave him. Hell, I couldn't even go in with him from the house because the girls didn't have a nurse. I got there as soon as I could, I left him at 2am with him still talking to me. I returned at 10am and he had his cardiac arrest at 10:30am. For half an hour I watched them brutally (but necessarily) try to revive him. After years of telling people not to lay him flat because it displaces all his fluids and he chokes on his own stomach contents, that is what is going through my mind. Not oh my god I hope he doesn't die, it was they are hurting him, he is going to be so pissed. Messed up, right? But when you spend so many years speaking up for him, it doesn't just shut off. In order for him to get good care anywhere it was essential that people liked him. Every reason that people had for not liking me was because I was taking that from him. I became what he needed to say and they hated my presence because of it, but it got him the care he needed.
These posts are my way of still trying to maintain my own happiness. When Mike first died I was almost paralyzed with fear that I will miss something and my girls will die. With Taylor being on a ventilator and her care being so similar to Mike's, the first time I was to care for her by myself after his death I was sobbing so hard I could barely see to do simple tasks. I never thought he would die, so how will I keep my own kids from dying. I transitioned from those thoughts to going to the cemetery to get out of the house. I was going every other day. One day I wasn't able to go because a nurse called off and my first thought was, he's going to be disappointed. That's when I knew that I was not in a healthy place. I started writing these blogs to replace going to the cemetery so often. It's helping. But I'm now trying to remember that this is MY story. I own my own words and thoughts. I'm still so careful of keeping the peace for Mike's sake that I forget that there is no peace to keep anymore. He's dead, his mother is dead. Why can't I just say she was the biggest bitch to me? Why am I still so careful with what he would think? He isn't here. Even when I read some of the posts I've made I noticed that I still will slip into present tense when I talk of him, I don't correct it.
I know things will get easier for me. I know that the nightmares will stop. I know that eventually I will love someone again, maybe. I know that I take excellent care of my kids. I know it isn't my fault that he died. I'm ok.
Subscribe to:
Posts (Atom)