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.
Sunday, July 31, 2016
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.
Monday, July 4, 2016
His poem, the precious words that I hold in my heart
My birthday was June 30th, last Thursday. It was really strange to not have his love..... his smile..... his words. I'm 48 years old, there is no good reason for me to miss him more on my birthday than any other day really. But I did. I was sad for myself for what I lost. I lost my best friend. My greatest love. I just wanted him. On the plus side, my girls are still doing great .... healthy and happy. And Adam... he is loved and happy and healthy. I gave myself that one day of feeling sorry for myself, that was my gift to myself I guess.
With being integrated more into his life before me, after his death, I am seeing him differently now. It's a strange feeling really. With ALS being a big part of our relationship, it was hard for both of us to think of anything but the future. I think he liked it better that I only knew him with his diagnosis. Afterall, the last "love of his life" couldn't hang with the diagnosis. And him with his diagnosis was all I knew and I loved him. I think it helped him trust my feelings more.
I plan on going to a Harvard football game this season. I still have his 91 Harvard jacket.... 91 was his number. I mention that because when I was first made aware of the Trust set up through Harvard was the Michael Vollmer '90 Fund, I was confusing it with his football jersey number 91. The " ' " should have been a clue for me. :)
One thing I did for myself on my birthday was that I wrote on my bedroom walls. I bought washable markers and I just started writing all these things that reminded me of him. I wanted to be surrounded by his words and words that made me think of him. The last compliment he gave me is written so that it is the first thing I see when I wake up. The poem that he wrote for me is written where I can see it from anywhere in the room. The poem is so beautiful. When he wrote it I was just sitting beside his bed studying. He had been asleep and woke up to see me sitting beside him. He had been asleep when I arrived and I didn't wake him. I saw from the corner of my eye that he was moving his head around typing something. I expected it to be instructions for what he needed. He stopped and looked over at me. When I met his eyes he mouthed the words.... read outloud. This is what I read....
I wake from what seems a dream
Look toward you and see you beam
With no question in my mind
I love you so desperately
The way it will always be
This is how we'll spend our time
Quiet, reflective moments
Now it all makes perfect sense
As I take your hand in mine
I never asked him if he memorized it or wrote it for me. I didn't ask because the only thing that mattered to me was that he wanted me to know that these words were how he felt about me. "Now it all makes perfect sense"...... knowing more fully now what his life was like before he met me...... "now it all makes perfect sense".... I was and am still honored to be loved by him.
With being integrated more into his life before me, after his death, I am seeing him differently now. It's a strange feeling really. With ALS being a big part of our relationship, it was hard for both of us to think of anything but the future. I think he liked it better that I only knew him with his diagnosis. Afterall, the last "love of his life" couldn't hang with the diagnosis. And him with his diagnosis was all I knew and I loved him. I think it helped him trust my feelings more.
I plan on going to a Harvard football game this season. I still have his 91 Harvard jacket.... 91 was his number. I mention that because when I was first made aware of the Trust set up through Harvard was the Michael Vollmer '90 Fund, I was confusing it with his football jersey number 91. The " ' " should have been a clue for me. :)
One thing I did for myself on my birthday was that I wrote on my bedroom walls. I bought washable markers and I just started writing all these things that reminded me of him. I wanted to be surrounded by his words and words that made me think of him. The last compliment he gave me is written so that it is the first thing I see when I wake up. The poem that he wrote for me is written where I can see it from anywhere in the room. The poem is so beautiful. When he wrote it I was just sitting beside his bed studying. He had been asleep and woke up to see me sitting beside him. He had been asleep when I arrived and I didn't wake him. I saw from the corner of my eye that he was moving his head around typing something. I expected it to be instructions for what he needed. He stopped and looked over at me. When I met his eyes he mouthed the words.... read outloud. This is what I read....
I wake from what seems a dream
Look toward you and see you beam
With no question in my mind
I love you so desperately
The way it will always be
This is how we'll spend our time
Quiet, reflective moments
Now it all makes perfect sense
As I take your hand in mine
I never asked him if he memorized it or wrote it for me. I didn't ask because the only thing that mattered to me was that he wanted me to know that these words were how he felt about me. "Now it all makes perfect sense"...... knowing more fully now what his life was like before he met me...... "now it all makes perfect sense".... I was and am still honored to be loved by him.
Subscribe to:
Posts (Atom)