After waiting an entire year (or maybe more) from the time we applied for home services to the day he moved in...... the day was October 7th. I remember when the case worker came in to the nursing home and said that everything was in place and all we had to do was pick a day. We didn't answer her right away because we both knew that being anxious to have him move in and the reality of getting all the vendors in place, were things to consider. I had already been in contact with the vendors that I use for my girls so that the nursing home just needed to order the supplies (they require physician orders initially). The only thing we were really working on was the ventilator itself. The company I use for Taylor wasn't accepting new patients for ventilators so we needed to find a different one. The social worker at the nursing home had a contact and I let her get it all set up. Just .... maybe 2 days.... before he was to move in I asked for the respiratory therapist to come in and go over the transition. Because the State was paying Mike's medical expenses they weren't too keen on paying for 2 ventilators but he couldn't go home with the one from the nursing home and he also couldn't go home without one. It's still rare enough for people to be living in the home setting with a ventilator that the State regulations haven't caught up with changing their rules to allow for things like this. The vendor came in and when I asked what ventilator he had available he gave me the make and model of a ventilator that I didn't recognize. I pulled it up on my phone and when I saw what he planned on giving him I knew that they were just pulling out an archaic model from the back of storage to make the most money. I refused the ventilator even at the risk of delaying his move in day. These things are important. Part of what I wanted to accomplish was to get the same make and model that I was already familiar with, being Taylor's ventilator. With all the stress of transitioning his care over to entirely me, I didn't want to relearn another vent. And I didn't feel comfortable using the company that the nursing home found because of what they offered and also their answers to other crucial questions like response time to troubleshoot events. I called around and found a company that was able to meet all our needs and had one in stock (another problem commonly found). This new company was great, the respiratory therapist was someone who really cared about Mike's needs and respected my comfort level with the vent I knew the best.
We didn't lose any days with changing this all around, thank goodness, it was just a little added stress. Move in day was such a whirlwind. Mike was so over the moon happy, as was I, and it all happened without a hitch. I had already packed up all his belongings (my brother helped me with that) and painted his room to the new colors he chose, and set up all the supplies we would need immediately so all that was left was Mike. Mike had already gone over with me what his needs were likely to be while being placed on the gurney and while traveling since he wouldn't have a way to communicate besides me reading his lips. Not just the anxiety that he had with being moved around like that but also the pain. Mike was a big guy and didn't always fit on the length of a gurney. Because most paralyzed people are without feeling, most medical support people are not mindful of not hurting him. I had to be diligent about where his arm, hands, legs, feet and head were at all times and to sometimes interrupt what was going on to fix what I knew would hurt him. Every bump they hit, every corner they turned required a quick visual assessment and adjustment. Also, his butt was not in good shape. What I mean is the skin was not intact due to the care given to him at the nursing home. He had 2 pressure sores when he came home and some other volatile areas that needed tended to for healing. Having the broken skin on his butt made the transportation events even more painful. We had already talked to the nursing home physician about loading him up with as much anxiety and pain meds that he could safely have (that amount is higher with the risk of respiratory suppression not being an issue with the ventilator) but it meant that I would need to be more aware of him since he wouldn't be as aware of himself.
As soon as we got him moved over into his new bed in our house, I took a picture of him. I wanted to capture that moment. I am so glad that I did even though he didn't like pictures of himself (at first). I don't need the pictures to bring up his face yet, but one day I might. He was so excited he couldn't sleep. Even with all those drugs in his system he was so alert and so happy. I brought the girls into his room to see him. They had already met when I brought the girls to the nursing home to visit with him. We all hung out together in his room while I made last minute adjustments to rearranging supplies and to meeting his needs.
We had a nurse scheduled for later that day so there wasn't much rest for me anytime soon. There was so much more than just medical needs with Mike that my input was required a lot of the time. So even with a nurse, I was never really off duty. The nurses I have for my girls have been with us for 8-14 years, I'm still on call but rarely needed when they are scheduled. That wasn't the case with Mike. If I was in the house I could hear everything in his room. I tried to keep my distance with new nurses for just a bit so that they could develop a relationship of communication and trust, but inevitably I would hear Mike's computer saying "get Ann". That was 24/7. It was hard to not lose my patience with the nurses, as Mike already had before telling them to get me. I walked in on the most ridiculous of situations. Knowing him as well as I did, he rarely had to tell me what was going on, I could assess it quickly. Most of the time I did what was needed to be done and spoke to the nurse as I was doing it so that they could learn a new skill. It wasn't received that way. They usually just sat back down and got back on their phone while I tended to his needs.
But watching his face while he was sleeping and seeing the difference in him from how I knew him in the nursing home made it all worth it. He knew he was finally safe and loved and cared for. I knew that he was finally able to live without fear. ALS is a bitch, living in a constant state of fear due to your environment makes it a thousand times harder...... that was all gone.
So this month is another memory for me to experience without him. But just like moving in with me was a step up for him in care, I try to think of him in death as an improvement from the pain he was in while here. That helps.
Saturday, October 15, 2016
Friday, September 16, 2016
Lessons still creep in
When caring for Mike became my sole responsibility there was a lot to learn still. We had spent over 2 years together while he still lived in the nursing home where he received care from them with their protocols. Once he lived here we were able to establish new protocols that were specific to his care. Turns out, some of those things specific to him are now helping me with Taylor.
I have an intuitive nature that helped me figure out how to help him in emergencies that we both were always grateful for. He could always tell what was going on with his body, which is unlike most paralyzed people due to ALS unique nature of letting you know exactly the hell you are now living in. Mike was such a huge supporter for me but more so when he moved in with me. As one family unit, he wanted to contribute to not just me, but my girls. When I would tell him what was worrying me about them (mostly Taylor) he would first and foremost ask if I had time to pray with him, if not, he did it without me. He would message me when he was done. My prayers were always quick little thoughts both good and bad and would be throughout the day. Mike's prayers were these long meditative sessions. I often didn't have time to pray with him but sometimes I would say... yes, but I'll need to duck out of this if I can tell I'm needed. He would message me when he was done and I would pop in and say "Amen".... he would enjoy that ending.... me too.
Some of the things that I started doing with him to help keep his airway clear worked great, some not so great. I could usually tell on my own what the outcome was, whether it had the desired outcome. But Mike could tell me how it FELT. That was a huge help for me when caring for Taylor. When Mike realized how much his input could help me help Taylor he started thinking more about what things could be similar between the two of them and how maybe he could help be a voice for her.
Both of my girls have been sick this month. Not quite hospital sick, but that is a small difference sometimes. One night I had been working with Taylor for about 3 hours (2am to 5am) trying to keep her airway clear and oxygen levels in the 90s. At 5am when I took a step back and tried to get myself out of reaction mode and into thinking mode, one word popped into my head....... cuff. I often get these little one word insights at just the right moment, so often that I no longer question them, I just do them. I knew what was now needed, I deflated her cuff and the change in pressure made her cough really big. Once she made her secretions mobile, I could get a LOT more out of her. Her oxygen numbers popped up to 98%!! That was a huge relief and a huge difference.
Once I sat down and started thinking about the past 3 hours it dawned on me why "cuff" came in my head. That was a trick Mike and I came up with together. When we used that method in a hospital setting, I would often get myself yelled at, but it worked. Mike knew that when we decided to do those things the consequences initially were on me but if we didn't say our sorries and show remorse, things got worse. That is always an issue with patients with chronic conditions. Mike knew what he needed but they would never do it, they wouldn't even put air in his cuff when you could hear it leaking...... crazy rules sometimes take away from actual patient care.
Once I knew that my intervention was actually Mike's intervention for her, I could breath better. He's still helping me.
Remember the songs that will randomly play that I associate with Mike...... well sitting in Chipotle the next day one of those songs played. Picture it..... Chipotle.... what kind of music do you hear while sitting in a Chipotle.... now imagine this song coming on...... Dance Me to the End of Love......
Such a good feeling.
I have an intuitive nature that helped me figure out how to help him in emergencies that we both were always grateful for. He could always tell what was going on with his body, which is unlike most paralyzed people due to ALS unique nature of letting you know exactly the hell you are now living in. Mike was such a huge supporter for me but more so when he moved in with me. As one family unit, he wanted to contribute to not just me, but my girls. When I would tell him what was worrying me about them (mostly Taylor) he would first and foremost ask if I had time to pray with him, if not, he did it without me. He would message me when he was done. My prayers were always quick little thoughts both good and bad and would be throughout the day. Mike's prayers were these long meditative sessions. I often didn't have time to pray with him but sometimes I would say... yes, but I'll need to duck out of this if I can tell I'm needed. He would message me when he was done and I would pop in and say "Amen".... he would enjoy that ending.... me too.
Some of the things that I started doing with him to help keep his airway clear worked great, some not so great. I could usually tell on my own what the outcome was, whether it had the desired outcome. But Mike could tell me how it FELT. That was a huge help for me when caring for Taylor. When Mike realized how much his input could help me help Taylor he started thinking more about what things could be similar between the two of them and how maybe he could help be a voice for her.
Both of my girls have been sick this month. Not quite hospital sick, but that is a small difference sometimes. One night I had been working with Taylor for about 3 hours (2am to 5am) trying to keep her airway clear and oxygen levels in the 90s. At 5am when I took a step back and tried to get myself out of reaction mode and into thinking mode, one word popped into my head....... cuff. I often get these little one word insights at just the right moment, so often that I no longer question them, I just do them. I knew what was now needed, I deflated her cuff and the change in pressure made her cough really big. Once she made her secretions mobile, I could get a LOT more out of her. Her oxygen numbers popped up to 98%!! That was a huge relief and a huge difference.
Once I sat down and started thinking about the past 3 hours it dawned on me why "cuff" came in my head. That was a trick Mike and I came up with together. When we used that method in a hospital setting, I would often get myself yelled at, but it worked. Mike knew that when we decided to do those things the consequences initially were on me but if we didn't say our sorries and show remorse, things got worse. That is always an issue with patients with chronic conditions. Mike knew what he needed but they would never do it, they wouldn't even put air in his cuff when you could hear it leaking...... crazy rules sometimes take away from actual patient care.
Once I knew that my intervention was actually Mike's intervention for her, I could breath better. He's still helping me.
Remember the songs that will randomly play that I associate with Mike...... well sitting in Chipotle the next day one of those songs played. Picture it..... Chipotle.... what kind of music do you hear while sitting in a Chipotle.... now imagine this song coming on...... Dance Me to the End of Love......
Such a good feeling.
Sunday, August 28, 2016
One Year
Well here it is, one year. He was pronounced dead by the physician on the 29th which is today, but it was on a Sunday, like yesterday. So all day Sunday I kept remembering things like deciding to go home to be with my girls for awhile. Like seeing Father Dean's number show up on my phone. He had never called me before. I was afraid he was calling to tell me that Mike had passed away, but he was calling to tell me I still had a chance to keep my promise to Mike but it would need to be soon. I remember waiting for a nurse to come to the house so I can leave. Trying to make it up to the hospital before he died. Walking in to his hospital room where I had spent the past week watching his body just slowly decay only to find him under a warming blanket and looking almost normal (the had the blanket covering him except his face). But also seeing who all was in the room. There was Barb, of course, having been named as family representative. There was Steve and his girlfriend, I was so angry with Steve for not having called me himself. And then the woman and her child who I had never laid eyes on before in 5 years. I still don't know who she is.
I went straight up to his bed and moved the blanket aside and put my gloved hand under his. He loved holding my hand that way. He said people were always touching him but I was the only one to put my hand under his so he could touch me. I could hear them all talking in the room... the nervous laughter.... the "this is how Mike would have wanted it"..... bullshit.... it was all bullshit. I wanted to just throat punch her to restore the quiet. I knew how much Mike had come to despise her for writing that horrible letter to him telling him he was going to "take the guilt of not having a good relationship with his mother before she died, to his grave". That was the last straw for Mike. And you all probably know him, you know.... it takes a lot for him to write people off.... he wrote her off. And here she is. Steve walked to the other side of Mike's bed looking at me after most everyone had went outside to smoke. I pleaded with him with my eyes more than words, asking him to take her out of the room. I had tears streaking my face looking at him just saying "please" and he only said that he couldn't. So I blocked them all out. I blocked out everything except Mike. I could tell by the monitor that his heart was almost done. I heard the nurse ask the respiratory therapist about shutting down his ventilator. I heard the respiratory therapist say that she can't until the physician pronounces him dead. I heard the nurse then tell the rest of them that the doctor would be in to talk to them soon. Barb, in her perpetual state of cluelessness took it upon herself to repeat what the nurse had said to them, to me. Again... the urge to throat punch was almost too much to ignore. But I refocused myself on Mike.
I know I wrote this somewhere but I don't know if it was in these blogs. Mike's fear of dying alone was a big one with living in the nursing home. We had a morbid sense of humor about things sometimes. I told him that I promise I will hold your hand until your last breathe. He grinned and said "you missed that one". We laughed and I tried again "I will hold your hand until your heart no longer beats". So standing there for the hour blocking them out and replaying that promise in my mind..... I laughed. How inappropriate is that?? It was just so absurd.... the circumstances surrounding him as I kept my promise...... I know he was already gone long before his heart stopped so I was picturing him having a bird's eye view on the whole scene. He would have laughed with me.
Mary "little old lady Mary" had called and asked if I would take her to the cemetery for his one year death anniversary. Of course, I am glad to be spending time with her and remembering Mike together this way. But I am becoming more and more certain that he really is around me all the time. Part of me wanted to think that way because there is a huge amount of comfort in that thought. The logic side of me says of course you want to think that way... there is a huge amount of comfort in your theory. I've finally managed to silence the "logic" side of me. He is still with me. He will always be with me. Going to the cemetery just isn't what I need to do anymore, but I'll be there with Mary in about 9 hours.
I went straight up to his bed and moved the blanket aside and put my gloved hand under his. He loved holding my hand that way. He said people were always touching him but I was the only one to put my hand under his so he could touch me. I could hear them all talking in the room... the nervous laughter.... the "this is how Mike would have wanted it"..... bullshit.... it was all bullshit. I wanted to just throat punch her to restore the quiet. I knew how much Mike had come to despise her for writing that horrible letter to him telling him he was going to "take the guilt of not having a good relationship with his mother before she died, to his grave". That was the last straw for Mike. And you all probably know him, you know.... it takes a lot for him to write people off.... he wrote her off. And here she is. Steve walked to the other side of Mike's bed looking at me after most everyone had went outside to smoke. I pleaded with him with my eyes more than words, asking him to take her out of the room. I had tears streaking my face looking at him just saying "please" and he only said that he couldn't. So I blocked them all out. I blocked out everything except Mike. I could tell by the monitor that his heart was almost done. I heard the nurse ask the respiratory therapist about shutting down his ventilator. I heard the respiratory therapist say that she can't until the physician pronounces him dead. I heard the nurse then tell the rest of them that the doctor would be in to talk to them soon. Barb, in her perpetual state of cluelessness took it upon herself to repeat what the nurse had said to them, to me. Again... the urge to throat punch was almost too much to ignore. But I refocused myself on Mike.
I know I wrote this somewhere but I don't know if it was in these blogs. Mike's fear of dying alone was a big one with living in the nursing home. We had a morbid sense of humor about things sometimes. I told him that I promise I will hold your hand until your last breathe. He grinned and said "you missed that one". We laughed and I tried again "I will hold your hand until your heart no longer beats". So standing there for the hour blocking them out and replaying that promise in my mind..... I laughed. How inappropriate is that?? It was just so absurd.... the circumstances surrounding him as I kept my promise...... I know he was already gone long before his heart stopped so I was picturing him having a bird's eye view on the whole scene. He would have laughed with me.
Mary "little old lady Mary" had called and asked if I would take her to the cemetery for his one year death anniversary. Of course, I am glad to be spending time with her and remembering Mike together this way. But I am becoming more and more certain that he really is around me all the time. Part of me wanted to think that way because there is a huge amount of comfort in that thought. The logic side of me says of course you want to think that way... there is a huge amount of comfort in your theory. I've finally managed to silence the "logic" side of me. He is still with me. He will always be with me. Going to the cemetery just isn't what I need to do anymore, but I'll be there with Mary in about 9 hours.
Sunday, August 7, 2016
Mike's 30th reunion from Newark Catholic
I had the pleasure of meeting more of Mike's friends this weekend. Mike had a friend from his Newark days who has been very kind to me even when Mike was still alive. Funny story.... I had posted (begged) on Facebook for anyone to come help me with Mike, nothing too difficult just holding him while he was on his side so that I could safely change his bed linens and give him a bath. I had added that if they didn't want to see him naked, then they probably wouldn't want to volunteer. Mike's friend sends me this message saying "there was a time when I would have LOVED to see Mike naked"..... she made me laugh. I walked into Mike's room and read it to him and he just did his normal innocent grin.
Back to present time.... this friend of his saw the pictures I had posted on Facebook from my trip to The Hill School to Mike's 30th reunion and mentioned that I should come to his 30th from Newark Catholic too, so I asked the guy putting it together and he kindly added me at no charge.
When I arrived, I kind of just stood outside the building for a good long time... I wasn't going to know anyone there. No one. I'm not shy and I do go most places alone, but this was different. I was walking into a room of people who knew my Mike from when he was young. I figured that they probably knew his family well, maybe even still kept in contact with them, and knowing that his family didn't like me I was apprehensive about meeting any bad feelings towards me. Luckily, that wasn't the case. They may have had a notion of not liking me but they didn't act that way towards me.
I stood off to the side by myself for awhile just watching people. They had set up a table and had some pictures of Mike and a lit candle. The flood of emotion that hit me for Mike's reunion at Hill wasn't present this time. I smiled when I saw the display, but I didn't feel the need to cry. The first person to talk to me was this friendly woman who was there as a spouse. I didn't quite know how to introduce myself.... I'm with Mike Vollmer... but he died. I'm Ann Francis, Mike Vollmer's girlfriend..... I'm a spouse too... kind of....
I don't even remember what I came up with. When she knew my connection to the event she excitedly told her husband. Thank goodness I had someone who knew I was coming and had a story to tell me right away about how he knew Mike. It was an athletic one... of course. LOL Soon I had a lot of people coming up to me saying "Hi Ann, I'm ________". Since I am used to being by myself it was weird for people I haven't met before to know my name. I think I may have even said a couple times "how do you know who I am?".
The friend who had mentioned the reunion to me showed up a little later and she greeted me with the most wonderful hug. Even though I didn't know her either..... I kind of had some connection.
I had to limit the alcohol since I would be driving another hour back home that night, but everyone else kept drinking which made the evening even more interesting. LOL
I heard of some of the things that happened at their house in Newark.... the mustang, the bronco, the parties, the pool, the senior party, the barn..... and the gerbil..... The gerbil... that had to be the funniest story I ever heard of Mike. I may not remember it correctly but it was something like this........ Mike was always a messy big guy who always had a shirt half tucked in, ink stains on the pocket... that kind of thing. The desks they used were the kind with the stool connected to a table that lifted to store your books. His friend said she saw the desk always moving around and the lid to the desk always kind of jumping. She figured that this was Mike's doing because he was such a big guy he didn't fit too comfortably in this arrangement. He was getting in trouble for chewing pens and pencils... I guess he never seemed to have a functioning writing utensil. One of the teachers was reprimanding him for chewing on a pen and that's when it was discovered that Mike had been keeping a GERBIL in his desk.....a GERBIL..... wth?? I about choked on my beer when she told me this story. And I could picture it. The look that he gave me all the time when he didn't feel the need to explain himself further was the same one I pictured him giving this teacher.
It was really nice hearing stories about his home life and how many people have such wonderful memories with his whole family.
In a way I feel sometimes like I'm still in a relationship with Mike, but I'm living it backwards now. Today I have cried some just thinking about how I wish I would have been able to experience all these positive interaction WITH him. Today more than most, I want more. More time with him. I want a do-over so I could add what I know of him now to how I loved him.
Back to present time.... this friend of his saw the pictures I had posted on Facebook from my trip to The Hill School to Mike's 30th reunion and mentioned that I should come to his 30th from Newark Catholic too, so I asked the guy putting it together and he kindly added me at no charge.
When I arrived, I kind of just stood outside the building for a good long time... I wasn't going to know anyone there. No one. I'm not shy and I do go most places alone, but this was different. I was walking into a room of people who knew my Mike from when he was young. I figured that they probably knew his family well, maybe even still kept in contact with them, and knowing that his family didn't like me I was apprehensive about meeting any bad feelings towards me. Luckily, that wasn't the case. They may have had a notion of not liking me but they didn't act that way towards me.
I stood off to the side by myself for awhile just watching people. They had set up a table and had some pictures of Mike and a lit candle. The flood of emotion that hit me for Mike's reunion at Hill wasn't present this time. I smiled when I saw the display, but I didn't feel the need to cry. The first person to talk to me was this friendly woman who was there as a spouse. I didn't quite know how to introduce myself.... I'm with Mike Vollmer... but he died. I'm Ann Francis, Mike Vollmer's girlfriend..... I'm a spouse too... kind of....
I don't even remember what I came up with. When she knew my connection to the event she excitedly told her husband. Thank goodness I had someone who knew I was coming and had a story to tell me right away about how he knew Mike. It was an athletic one... of course. LOL Soon I had a lot of people coming up to me saying "Hi Ann, I'm ________". Since I am used to being by myself it was weird for people I haven't met before to know my name. I think I may have even said a couple times "how do you know who I am?".
The friend who had mentioned the reunion to me showed up a little later and she greeted me with the most wonderful hug. Even though I didn't know her either..... I kind of had some connection.
I had to limit the alcohol since I would be driving another hour back home that night, but everyone else kept drinking which made the evening even more interesting. LOL
I heard of some of the things that happened at their house in Newark.... the mustang, the bronco, the parties, the pool, the senior party, the barn..... and the gerbil..... The gerbil... that had to be the funniest story I ever heard of Mike. I may not remember it correctly but it was something like this........ Mike was always a messy big guy who always had a shirt half tucked in, ink stains on the pocket... that kind of thing. The desks they used were the kind with the stool connected to a table that lifted to store your books. His friend said she saw the desk always moving around and the lid to the desk always kind of jumping. She figured that this was Mike's doing because he was such a big guy he didn't fit too comfortably in this arrangement. He was getting in trouble for chewing pens and pencils... I guess he never seemed to have a functioning writing utensil. One of the teachers was reprimanding him for chewing on a pen and that's when it was discovered that Mike had been keeping a GERBIL in his desk.....a GERBIL..... wth?? I about choked on my beer when she told me this story. And I could picture it. The look that he gave me all the time when he didn't feel the need to explain himself further was the same one I pictured him giving this teacher.
It was really nice hearing stories about his home life and how many people have such wonderful memories with his whole family.
In a way I feel sometimes like I'm still in a relationship with Mike, but I'm living it backwards now. Today I have cried some just thinking about how I wish I would have been able to experience all these positive interaction WITH him. Today more than most, I want more. More time with him. I want a do-over so I could add what I know of him now to how I loved him.
Sunday, July 31, 2016
More about Ender
I mentioned before how Ender became a part of our family, I thought I would talk more about that experience. He was an interesting addition. I remember saying that I didn't know anything about raising a puppy and that Mike had bought me books and videos to help me with training him. Mike had told me he loved feeling his cat, Liberty, curling up to sleep between his knees and he took a lot of comfort from this cat once he couldn't move his legs as much anymore. So Ender's breed is known to be a lap dog. What we didn't take into consideration is how needy he is. LOL This dog would manipulate whoever he could to make sure that he was the center of attention at all times. Mike and I would laugh a lot at his efforts. I started calling the dog Sneaky Pete. We almost renamed him. Mike would send me messages saying Sneaky Pete kept the nurse busy today. :)
We would keep him up on Mike's bed with him as much as we could. It was so much fun watching him figuring Mike out. Ender would try to get Mike to pet him... of course not knowing that he couldn't move.... and would start nibbling on his hand. He never broke the skin, but Mike would sometimes look at me and mouth "ow".
Mike started ordering him toys and treats from Amazon. We would get a package every other day. Funny story...... when we kept getting delivery after delivery for Ender..... I would tease Mike that he now has proven that he knows how to buy for others. He responded by buying me a new leash..... in pink..... He cracked me up.
We trained Ender to get up on Mike's bed on his own but he never quite got the hang of getting down. The hardwood floors and his furry paws made for an awkward landing. We put a chair beside Mike's bed and I would sit there reading. Ender would want to get up on my lap while sitting there and I would put him up on Mike's bed. He would crawl around under his computer screen and hide there if he didn't want to get out of the bed. I would train Ender to sit and wait on me to call for him while we were back in Mike's room. It was hard for Mike to see him on floor level so I would do these things a little farther from him so he could see Ender and Ender's reactions to having to wait to being called. Mike was impressed.... I think by me as much as Ender. lol
With keeping the chair by Mike's bed Ender could eventually jump up on the chair and then up onto Mike's bed. I was in his room hanging his tube feeding when Ender figured this out for the first time. Mike's face was hilarious. He laughed so hard. Ender's new freedom in accessing Mike became just a little too much for Mike sometimes, so we moved the chair.
We decided that I would start taking Ender to puppy training classes.... once a week. I would video as much of the class as I could so that Mike could see how he did with other dogs. He was a complete mouthy chickenshit. Pretty much what we thought. Ender graduated and we were going to stop there with the classes but then we got a letter from the agency saying that they received complaints from the nurses that they don't feel taking care of Ender was part of their job. All the nurses knew of Ender being Mike's dog prior to being hired and they were all dog owners themselves. We never did figure out who made a complaint but Mike wrote a letter to the agency. It needed to be Mike writing the letter and not me because he was so much better at communicating and resolving issues than I was. We kept Ender in the classes so that he could be trained as a therapy dog. Mike's thought was that with Ender listed on his Plan of Care as a Certified Therapy Dog, the agency would have to care for the animal as well as Mike. It didn't work out that way...... agencies just have way too much power. We kept the same agency but Mike figured out who would have complained and we just phased out that nurse. Problem solved.
Mike loved that Ender was so good with the twins too. He took pride in his dog and he loved his dog. I feel bad now for the times when Mike saw me lose my temper with the dog, but I can't change that now. I posted so many.... so, so many.... videos and pictures of Ender on Facebook. I did it because it was the easiest way for Mike to see how and what his dog was doing. Along the way.... a lot of dog lovers became quite the fan of Ender. He was a very photogenic dog afterall.
Mike and I hit a really rough patch in our relationship. There are a lot of reasons and issues surrounding it that I just don't want to talk about. But giving Ender up to someone was discussed. He wanted Ender to go to his friend Paul. Paul and his family had been to the house multiple times and the kids loved playing with Ender. When Mike and I, thankfully, resolved our issues, Ender stayed with us.
After Mike died, I tried keeping Ender with me and my girls. I tried, but I just didn't have anything left to give to anyone... not even a pet. I know a lot of people take comfort in having their pets around them when they are sad, I'm not one of them.
I talked with Adam and he wanted Ender. Ender loved Adam and Adam loved Ender.... it was the perfect solution. I don't miss having Ender to take care of, but I do miss him. My mother was in town this past week. Mom is just one of those women who clean constantly... even if it isn't their own house. So with Mom here, the couch was moved away from the wall and there was a gazillion balls and toys under there.... don't judge, I don't move the couch much apparently. I wasn't home when she did this, but the nurse at the house sent me a picture. My very first thought was to send the picture to Mike expecting him to say something about how Ender must have known and that's why he kept digging at the couch.... something I complained about... a lot.
I love that Ender brought Mike so much joy and I love that my son now has him to love on too.
We would keep him up on Mike's bed with him as much as we could. It was so much fun watching him figuring Mike out. Ender would try to get Mike to pet him... of course not knowing that he couldn't move.... and would start nibbling on his hand. He never broke the skin, but Mike would sometimes look at me and mouth "ow".
Mike started ordering him toys and treats from Amazon. We would get a package every other day. Funny story...... when we kept getting delivery after delivery for Ender..... I would tease Mike that he now has proven that he knows how to buy for others. He responded by buying me a new leash..... in pink..... He cracked me up.
We trained Ender to get up on Mike's bed on his own but he never quite got the hang of getting down. The hardwood floors and his furry paws made for an awkward landing. We put a chair beside Mike's bed and I would sit there reading. Ender would want to get up on my lap while sitting there and I would put him up on Mike's bed. He would crawl around under his computer screen and hide there if he didn't want to get out of the bed. I would train Ender to sit and wait on me to call for him while we were back in Mike's room. It was hard for Mike to see him on floor level so I would do these things a little farther from him so he could see Ender and Ender's reactions to having to wait to being called. Mike was impressed.... I think by me as much as Ender. lol
With keeping the chair by Mike's bed Ender could eventually jump up on the chair and then up onto Mike's bed. I was in his room hanging his tube feeding when Ender figured this out for the first time. Mike's face was hilarious. He laughed so hard. Ender's new freedom in accessing Mike became just a little too much for Mike sometimes, so we moved the chair.
We decided that I would start taking Ender to puppy training classes.... once a week. I would video as much of the class as I could so that Mike could see how he did with other dogs. He was a complete mouthy chickenshit. Pretty much what we thought. Ender graduated and we were going to stop there with the classes but then we got a letter from the agency saying that they received complaints from the nurses that they don't feel taking care of Ender was part of their job. All the nurses knew of Ender being Mike's dog prior to being hired and they were all dog owners themselves. We never did figure out who made a complaint but Mike wrote a letter to the agency. It needed to be Mike writing the letter and not me because he was so much better at communicating and resolving issues than I was. We kept Ender in the classes so that he could be trained as a therapy dog. Mike's thought was that with Ender listed on his Plan of Care as a Certified Therapy Dog, the agency would have to care for the animal as well as Mike. It didn't work out that way...... agencies just have way too much power. We kept the same agency but Mike figured out who would have complained and we just phased out that nurse. Problem solved.
Mike loved that Ender was so good with the twins too. He took pride in his dog and he loved his dog. I feel bad now for the times when Mike saw me lose my temper with the dog, but I can't change that now. I posted so many.... so, so many.... videos and pictures of Ender on Facebook. I did it because it was the easiest way for Mike to see how and what his dog was doing. Along the way.... a lot of dog lovers became quite the fan of Ender. He was a very photogenic dog afterall.
Mike and I hit a really rough patch in our relationship. There are a lot of reasons and issues surrounding it that I just don't want to talk about. But giving Ender up to someone was discussed. He wanted Ender to go to his friend Paul. Paul and his family had been to the house multiple times and the kids loved playing with Ender. When Mike and I, thankfully, resolved our issues, Ender stayed with us.
After Mike died, I tried keeping Ender with me and my girls. I tried, but I just didn't have anything left to give to anyone... not even a pet. I know a lot of people take comfort in having their pets around them when they are sad, I'm not one of them.
I talked with Adam and he wanted Ender. Ender loved Adam and Adam loved Ender.... it was the perfect solution. I don't miss having Ender to take care of, but I do miss him. My mother was in town this past week. Mom is just one of those women who clean constantly... even if it isn't their own house. So with Mom here, the couch was moved away from the wall and there was a gazillion balls and toys under there.... don't judge, I don't move the couch much apparently. I wasn't home when she did this, but the nurse at the house sent me a picture. My very first thought was to send the picture to Mike expecting him to say something about how Ender must have known and that's why he kept digging at the couch.... something I complained about... a lot.
I love that Ender brought Mike so much joy and I love that my son now has him to love on too.
Wednesday, July 27, 2016
Almost a year and CPR renewal
I am always very aware that August is coming soon. August is the month he died. I think I will be better once that One Year mark comes and goes. I am doing pretty good now though. The nightmares have stopped. I have started dating some. I haven't felt any guilt driven need to go to the cemetery. I am maintaining healthy relationships with people who loved him too.
I still can't stand the thought of changing my relationship status on facebook.... silly.... I know.
I was reminded this weekend that my CPR was soon to expire. I need this to be a nurse. Luckily there are online classes that I can take and just print out my proof. One of the nurses for my girls went on vacation last week so I've been covering the hours. I love being able to spend all this one on one time with them. But, being home to care for them meant that I needed to get this course taken online and quickly. I sat down with my computer where they could see me and put a video in for them to watch and got started. It was a 5 hours course. After about 1/3 the way into the videos, I noticed that my mouth was really dry and that I had this all too familiar anxious feeling. I couldn't really spend any time figuring out what was causing this because I really needed to focus on the course. I figured that maybe having a deadline was making me anxious.
Then I came to the section on Agonal Breathing..... agonal breathing.... the ineffective breathing that looks like a mouth gulping. Mike would do that every time he was getting septic. He wouldn't know he was doing it until I put a mirror in front of him. He closed his eyes and agreed to go to the hospital. I was always surprised that even with being diagnosed respiratory failure that this neurological response still happened. I let my mind wander a bit to seeing him doing the agonal breathing. My panic got worse. Then I came to the section where the cardiac part of CPR was being explained and it hit me hard...... I started reliving all of it.... everything that was said and done and how he looked and even the clock on the wall in the room. All of it.
My tears made it difficult to continue. I stepped away for a minute. I stood in the kitchen and tried to just think my way out of my emotional state. That usually works for me. I realized that this reaction wasn't sadness..... it wasn't premeditated. I didn't think.... I have to do this and I know it's going to be hard to not think of Mike. It hit me totally out of the blue. I kind of think that that is a good thing.
I finished the course. I even passed. In a really weird way, it kind of felt good to know that his death still has a hold on me. Even typing that I know it isn't exactly healthy.... but it's the truth. But at the same time it kind of felt good that the sadness was no longer anticipated, it was a surprise. I think that's a good thing.
I still can't stand the thought of changing my relationship status on facebook.... silly.... I know.
I was reminded this weekend that my CPR was soon to expire. I need this to be a nurse. Luckily there are online classes that I can take and just print out my proof. One of the nurses for my girls went on vacation last week so I've been covering the hours. I love being able to spend all this one on one time with them. But, being home to care for them meant that I needed to get this course taken online and quickly. I sat down with my computer where they could see me and put a video in for them to watch and got started. It was a 5 hours course. After about 1/3 the way into the videos, I noticed that my mouth was really dry and that I had this all too familiar anxious feeling. I couldn't really spend any time figuring out what was causing this because I really needed to focus on the course. I figured that maybe having a deadline was making me anxious.
Then I came to the section on Agonal Breathing..... agonal breathing.... the ineffective breathing that looks like a mouth gulping. Mike would do that every time he was getting septic. He wouldn't know he was doing it until I put a mirror in front of him. He closed his eyes and agreed to go to the hospital. I was always surprised that even with being diagnosed respiratory failure that this neurological response still happened. I let my mind wander a bit to seeing him doing the agonal breathing. My panic got worse. Then I came to the section where the cardiac part of CPR was being explained and it hit me hard...... I started reliving all of it.... everything that was said and done and how he looked and even the clock on the wall in the room. All of it.
My tears made it difficult to continue. I stepped away for a minute. I stood in the kitchen and tried to just think my way out of my emotional state. That usually works for me. I realized that this reaction wasn't sadness..... it wasn't premeditated. I didn't think.... I have to do this and I know it's going to be hard to not think of Mike. It hit me totally out of the blue. I kind of think that that is a good thing.
I finished the course. I even passed. In a really weird way, it kind of felt good to know that his death still has a hold on me. Even typing that I know it isn't exactly healthy.... but it's the truth. But at the same time it kind of felt good that the sadness was no longer anticipated, it was a surprise. I think that's a good thing.
Wednesday, July 13, 2016
Youtube videos
When Mike first moved in we had a pretty good agency here to care for him. But here is the thing with agencies.... they do what we call a bait and switch or maybe even a false leader marketing strategy. What that meant for us was... the pull their best nurses from other cases to open Mike up as a new case. After Mike and I train these nurses to his particular needs, they take those same nurses off his service plan and start sending different nurses..... crappier nurses.... nurses who don't even bring anything with them but their lunches. We interviewed literally hundreds of nurses and agencies over the two year period here at the house. They would fall asleep, they would lie about medications, they would give improper care, they would lie to their supervisors anytime Mike complained about his care. Mike would expect me to stay for their entire working shift and train them. Which meant that even when he had a nurse, I couldn't ever be off duty. We had cameras put up after they started lying to agencies claiming that they didn't want to come back because we were verbally abusive. We had more than one nurse just leave him here in the middle of their shift. It's technically called patient abandonment if no one accepts assignment for his care, which I told them I would not do until the end of their shift and they would leave anyway. Their supervisors would tell them to. That would mean we would have to find yet another agency to provide care and in the meantime I was left alone to do all of it. So even though the State of Ohio awarded him 20 hours a day of skilled nursing care.... we couldn't find anyone to staff. Eventually Mike just started letting anyone willing to be here stay here. This always angered me. He thought he was doing it for me and I didn't want him doing it for me because HE deserved better. I filed complaints against these nurses and agencies and case workers. It resulted in a case worker getting fired. We also received letters notifying us that our claims had been found to be substantiated and due process way being done. That sounds great doesn't it? It usually only meant that they had to write a letter of restitution... not much more than that. And filing all this stuff in addition to his daily care was exhausting. I stopped filing. We were trying to do right by other patients who needed services by complaining against the nurses who put his life at risk. Eventually we just kept them out of our house.
When an agency is hired, they send a nurse out to the house to do an assessment on the patient and write up a care plan that will be signed by the physician and that care plan is now the orders for the care that the nurses are required to perform. If.... and this is a big if..... they wrote the care plan correctly, the nurses coming to the house didn't even look at it. We insisted that we see the finalized care plan before the physician signed the document to make sure that it was correct. For all the good it did, since the nurses either didn't show up or showed up and didn't know anything more than his name. Theses nurses truly lacked very basic skills...... everything from toileting to sterile technique used for suctioning his airway.
Mike and I decided to start making Youtube videos demonstrating his care. Whoever was available in the house would hold my phone and record me performing and explaining tasks and skills. We then would give the link to the agency and ask them to have the nurses assigned to his care watch the videos prior to their first shift in the hopes of me having to spend less time training them one on one. They didn't watch them.
Even thought he intended purpose was not fulfilled, there seems to now be another purpose becoming known.
People have made comments on the videos complaining about what they think are errors in his care. Most of them are rude. A lot of them are by students who think they know something. I've responded to all of them with an answer to fill in the gaps of their understanding. Through these videos, a man had contacted me asking if he could speak with Mike. I gave Mike his information, but Mike was too weak to do much typing so I continued our dialog. This man was an attorney living in another State and his wife had been recently diagnosed. We stayed in contact up until Mike died.
And then this week, I get an email from a man who runs a program for emergency response personnel in Canada asking for my permission to use the videos as a case study and to provide him with some background information on Mike so that his life will seem more real to those reading and watching the videos. I wrote him back with some caveats to the use of the videos.... first off to emphasize that they are not intended as medical advice, only as demonstrations of care provided as instructed by the patient being videotaped.
His request got me thinking some though..... this whole time I think of Mike's life and influence on people and what he has meant to others with his classroom dedication at the Hill School and the Harvard Trust, but maybe I can be more proactive in continuing his fight for qualified care. When Mike died, I hated hearing the words ALS. I swore to myself that I will not do any fund raisers or walks or stay active in any support groups. I wanted nothing more to do with this horrible blasted disease. And now.... now I see that I do have something to contribute. Not so much as a nurse, although I feel I am a damn good one. But as someone who navigated a flawed system, who knew how to keep Mike calm in medical traumas, who stood my ground in advocating his care at every turn. The video showing me suctioning his airway has been viewed over 24k times. If I had ever thought that that many people would be seeing us, I would have put something on besides a housecoat and no makeup. But that is what our life looked like. Those videos are who we were. If you watch the videos you will even see me mess up and claim it and keep going. I don't want to be a teacher in a class setting, but maybe I can be a life coach for those who don't get much practical advice from case workers and direct care providers. I finally have reached a point where I am not angry when I hear or see the words ALS but I have not reached the point where I don't shed a tear when Mike's name is added to that disease. But maybe I don't have to be so strong to do good. I think Mike would want these videos used to help others. I am grateful that someone wants to learn more about caring for those with ALS.
When an agency is hired, they send a nurse out to the house to do an assessment on the patient and write up a care plan that will be signed by the physician and that care plan is now the orders for the care that the nurses are required to perform. If.... and this is a big if..... they wrote the care plan correctly, the nurses coming to the house didn't even look at it. We insisted that we see the finalized care plan before the physician signed the document to make sure that it was correct. For all the good it did, since the nurses either didn't show up or showed up and didn't know anything more than his name. Theses nurses truly lacked very basic skills...... everything from toileting to sterile technique used for suctioning his airway.
Mike and I decided to start making Youtube videos demonstrating his care. Whoever was available in the house would hold my phone and record me performing and explaining tasks and skills. We then would give the link to the agency and ask them to have the nurses assigned to his care watch the videos prior to their first shift in the hopes of me having to spend less time training them one on one. They didn't watch them.
Even thought he intended purpose was not fulfilled, there seems to now be another purpose becoming known.
People have made comments on the videos complaining about what they think are errors in his care. Most of them are rude. A lot of them are by students who think they know something. I've responded to all of them with an answer to fill in the gaps of their understanding. Through these videos, a man had contacted me asking if he could speak with Mike. I gave Mike his information, but Mike was too weak to do much typing so I continued our dialog. This man was an attorney living in another State and his wife had been recently diagnosed. We stayed in contact up until Mike died.
And then this week, I get an email from a man who runs a program for emergency response personnel in Canada asking for my permission to use the videos as a case study and to provide him with some background information on Mike so that his life will seem more real to those reading and watching the videos. I wrote him back with some caveats to the use of the videos.... first off to emphasize that they are not intended as medical advice, only as demonstrations of care provided as instructed by the patient being videotaped.
His request got me thinking some though..... this whole time I think of Mike's life and influence on people and what he has meant to others with his classroom dedication at the Hill School and the Harvard Trust, but maybe I can be more proactive in continuing his fight for qualified care. When Mike died, I hated hearing the words ALS. I swore to myself that I will not do any fund raisers or walks or stay active in any support groups. I wanted nothing more to do with this horrible blasted disease. And now.... now I see that I do have something to contribute. Not so much as a nurse, although I feel I am a damn good one. But as someone who navigated a flawed system, who knew how to keep Mike calm in medical traumas, who stood my ground in advocating his care at every turn. The video showing me suctioning his airway has been viewed over 24k times. If I had ever thought that that many people would be seeing us, I would have put something on besides a housecoat and no makeup. But that is what our life looked like. Those videos are who we were. If you watch the videos you will even see me mess up and claim it and keep going. I don't want to be a teacher in a class setting, but maybe I can be a life coach for those who don't get much practical advice from case workers and direct care providers. I finally have reached a point where I am not angry when I hear or see the words ALS but I have not reached the point where I don't shed a tear when Mike's name is added to that disease. But maybe I don't have to be so strong to do good. I think Mike would want these videos used to help others. I am grateful that someone wants to learn more about caring for those with ALS.
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