kedevlin23
Active member
- Joined
- Aug 18, 2009
- Messages
- 38
- Reason
- Loved one DX
- Country
- US
- State
- PA
- City
- My Oasis
My dad was a top notch guy. A State Trooper for 33 years, a member of the ski patrol at various ski areas in NY State for 20+ years. He was a wonderful craftsman and a real do it yourselfer. He loved tinkering, fast cars and his Harley. Most of all he loved his family. He retired from the State Police and enjoyed his winters being on the Ski Patrol and Summers as a Park Police officer. He had Spring and Fall off each year - what a wonderful retirement life he was leading.
He was a strong man - not meant to live his life in a wheel chair with feeding or breathing assistance. He knew this - this is what made getting diagnosed with this awful disease in Sept '09 disasterous for him. It broke all of our hearts. He put up a good front.
He started seeing various symptoms in early 2009 - all of which he was seeing separate MDs for - finally he met with a neurologist (1 of 7) - first they thought Parkinsons, but his progression was rapid. He would lose his balance every once in a while, then he had to use a cane - then a walker and finally in Sept '09 a wheel chair. They finally settled on a Dx of ALS. He would tell his Dr @ Clinic that he was sick of this diagnosis and wanted a new one.
Over the past month or so he started to lose strength in his arms. On 3/18 - he started to get sick - throwing up - over the next week he was rx'd anti-nausea meds and he told my mom he was feeling better so that they would come to see me the following weekend for my son's 3rd birthday. Dad would stay behind with my cousin who is a RN. On 3/26 he was admitted into the ER - severe dehydration, vomiting, fatigue, etc. The next day Mom was at the hospital with him. He deteriorated quickly - there was no ability to diagnose the cause of the constant vomiting - all labs were coming back in range. However, there was sneaking suspicion that due to his recent loss of function in his arms that his breathing and swallowing reflexes were also starting to deteriorate. We all think that Dad knew this - we all are sure he didn't want to deal with what was coming next (vent, PEG, etc). His ALS book was bookmarked @ the ventilation, PEG and sleeping/breathing chapter.
He was refusing everything - wouldn't wear the bipap - thus wasn't sleeping - he was in various states of delusion which came and went. He developed aspriatory pneumonia while in the hospital. He was telling us he wanted to die (multiple times) - he would stare at me and just say please, please, please over and over again. By Wens 3/31 after much discussion with the MDs and only a few discussion with Dad (as it was clear what he was choosing) - he asked to be taken off his antibiotics, refused a feeding tube, he signed his DNR and DNI and the rest is history.
From Wens - Fri AM by far were the worst days of my life. I spent every minute in his room with tons of other family and friends watching him deteriorate and take the last breaths of his great and wonderful life. On 4/2 @6:21am he took his last shallow breath and was gone. It was a beautiful sunny day.
We will miss him forever and hate that we had to agree with his decisions, but he did not want to put my mom through the torment of caring for him in the final stages of this disease. He also did not want to be locked in his failing body with no quality of life.
We were able to get him transported to and from Burlington VT to have his brain and spinal cord, etc. donated to go to research at Mass General Hospital in Boston. I hope some good comes out of that decision, which was a very important decision for Dad - in the hopes that no one else would have to go through what he and all of the people who loved him had to.
As we plan for his services tomorrow and Wens - we are busy doing all the things that are required to celebrate his life. Tomorrow and Wens are going to be a bear as we celebrate a life that was just taken too soon - that turned our worlds upside down.
RIP Dad - you will live forever in our hearts 2/1/44 - 4/2/10.
He was a strong man - not meant to live his life in a wheel chair with feeding or breathing assistance. He knew this - this is what made getting diagnosed with this awful disease in Sept '09 disasterous for him. It broke all of our hearts. He put up a good front.
He started seeing various symptoms in early 2009 - all of which he was seeing separate MDs for - finally he met with a neurologist (1 of 7) - first they thought Parkinsons, but his progression was rapid. He would lose his balance every once in a while, then he had to use a cane - then a walker and finally in Sept '09 a wheel chair. They finally settled on a Dx of ALS. He would tell his Dr @ Clinic that he was sick of this diagnosis and wanted a new one.
Over the past month or so he started to lose strength in his arms. On 3/18 - he started to get sick - throwing up - over the next week he was rx'd anti-nausea meds and he told my mom he was feeling better so that they would come to see me the following weekend for my son's 3rd birthday. Dad would stay behind with my cousin who is a RN. On 3/26 he was admitted into the ER - severe dehydration, vomiting, fatigue, etc. The next day Mom was at the hospital with him. He deteriorated quickly - there was no ability to diagnose the cause of the constant vomiting - all labs were coming back in range. However, there was sneaking suspicion that due to his recent loss of function in his arms that his breathing and swallowing reflexes were also starting to deteriorate. We all think that Dad knew this - we all are sure he didn't want to deal with what was coming next (vent, PEG, etc). His ALS book was bookmarked @ the ventilation, PEG and sleeping/breathing chapter.
He was refusing everything - wouldn't wear the bipap - thus wasn't sleeping - he was in various states of delusion which came and went. He developed aspriatory pneumonia while in the hospital. He was telling us he wanted to die (multiple times) - he would stare at me and just say please, please, please over and over again. By Wens 3/31 after much discussion with the MDs and only a few discussion with Dad (as it was clear what he was choosing) - he asked to be taken off his antibiotics, refused a feeding tube, he signed his DNR and DNI and the rest is history.
From Wens - Fri AM by far were the worst days of my life. I spent every minute in his room with tons of other family and friends watching him deteriorate and take the last breaths of his great and wonderful life. On 4/2 @6:21am he took his last shallow breath and was gone. It was a beautiful sunny day.
We will miss him forever and hate that we had to agree with his decisions, but he did not want to put my mom through the torment of caring for him in the final stages of this disease. He also did not want to be locked in his failing body with no quality of life.
We were able to get him transported to and from Burlington VT to have his brain and spinal cord, etc. donated to go to research at Mass General Hospital in Boston. I hope some good comes out of that decision, which was a very important decision for Dad - in the hopes that no one else would have to go through what he and all of the people who loved him had to.
As we plan for his services tomorrow and Wens - we are busy doing all the things that are required to celebrate his life. Tomorrow and Wens are going to be a bear as we celebrate a life that was just taken too soon - that turned our worlds upside down.
RIP Dad - you will live forever in our hearts 2/1/44 - 4/2/10.
