GK62
New member
- Joined
- Jan 22, 2013
- Messages
- 2
- Reason
- Loved one DX
- Country
- CA
- State
- BC
- City
- Vancouver
My Dad passed away four months ago from respiratory failure due to ALS. Dad handled his illness with grace, integrity, and courage. From the moment of his diagnosis, which was 11 months before he passed, he never showed any fear nor helplessness mostly because he didn’t want his family to be stressed as to his impending fate. Up until the end, he showed such selflessness that was truly amazing.
I’m sure all of you who have or have had a family member diagnosed with this terrible disease can relate to the experiences that we all go through. The utter disbelief when the doctor asserts his diagnosis. The helpless feeling that overcomes you when you realize that there is no cure – and the equally nauseating feeling you feel when you realize that the disease is sporadic with no cause. With some terminal illnesses, there is some underlying cause, sometimes remote and sometimes fairly direct as in the case of a lifelong smoker contracting lung cancer. With ALS, there is nothing. As a result, you question your faith, question statistics, question the medical system. But, there’s nothing. No hope, no cure, just nothing. Even some cancer patients have doctors that at least get your hopes up by telling you that chemo or radiation may work – here, there’s nothing. The neurologist starts discussing "end-of-life" steps. You are simply waiting around until the end.
That’s when your mind and thoughts spin out in a frenzy. Google becomes your best friend and worst enemy at the same time. You surf the web in an effort to understand what just happened and what lies ahead. But of course, there’s no solace. You feel guilty everyday because you cannot stop thinking about what life will be like when Dad’s not there. You begin the upsetting task of getting his affairs in order and trying to talk to him about his wishes.
The deterioration is the worst part. Mostly because it’s so nebulous – you don’t notice it on a daily basis. You see it as the weeks and months go by. It’s only after the fact that you begin to notice that Dad stopped driving at this time, stopped talking at this time, and stopped walking at this time. That’s the other horrible thing about ALS is that it robs you of all your memories of that person before the onset of the disease struck. Right before my Dad passed away, I thought to myself that I didn’t remember the way my Dad was before the disease hit. Looking at pictures of him even now, it’s hard to imagine that he was in fact so full of life before because all that gets embedded in your head is the sickness.
Unfortunately for my Dad, his breathing muscles were the first to be affected and of course kept rapidly getting worse. You curse your education because you know after reading all the literature exactly how death occurs. My Dad’s was no different. He developed a minor respiratory infection which we thought antibiotics would help. Two days later, he couldn’t breathe at all without his Bi-Pap machine and so I called the Ambulance right away. Again, you curse your education because I knew what was coming … I knew that this would be the last time he would leave his home.
Two days later in the hospital, my Dad still could not breathe on his own and months earlier made his intentions known that he did not want to live life on a ventilator. He was in a lot of discomfort and the doctor advised us that the Bi-Pap was essentially a form of life support. We knew that this was not what Dad wanted. As such, we made the painful decision to have the doctors remove his mask.
We all held his hands when the morphine was administered and the mask from the machine was removed. Within three minutes, he breathed his last breath and drifted away without ever opening his eyes. The whole process, minute by minute, is etched into my brain - of course, thinking about it wells my eyes with tears every time.
Like many of you on this forum, I struggle everyday with grief and guilt, but at the same time, I am comforted by the fact that my Dad exited this life on his terms and at peace.
My condolences to all of you have lost loved ones from this terrible disease.
I’m sure all of you who have or have had a family member diagnosed with this terrible disease can relate to the experiences that we all go through. The utter disbelief when the doctor asserts his diagnosis. The helpless feeling that overcomes you when you realize that there is no cure – and the equally nauseating feeling you feel when you realize that the disease is sporadic with no cause. With some terminal illnesses, there is some underlying cause, sometimes remote and sometimes fairly direct as in the case of a lifelong smoker contracting lung cancer. With ALS, there is nothing. As a result, you question your faith, question statistics, question the medical system. But, there’s nothing. No hope, no cure, just nothing. Even some cancer patients have doctors that at least get your hopes up by telling you that chemo or radiation may work – here, there’s nothing. The neurologist starts discussing "end-of-life" steps. You are simply waiting around until the end.
That’s when your mind and thoughts spin out in a frenzy. Google becomes your best friend and worst enemy at the same time. You surf the web in an effort to understand what just happened and what lies ahead. But of course, there’s no solace. You feel guilty everyday because you cannot stop thinking about what life will be like when Dad’s not there. You begin the upsetting task of getting his affairs in order and trying to talk to him about his wishes.
The deterioration is the worst part. Mostly because it’s so nebulous – you don’t notice it on a daily basis. You see it as the weeks and months go by. It’s only after the fact that you begin to notice that Dad stopped driving at this time, stopped talking at this time, and stopped walking at this time. That’s the other horrible thing about ALS is that it robs you of all your memories of that person before the onset of the disease struck. Right before my Dad passed away, I thought to myself that I didn’t remember the way my Dad was before the disease hit. Looking at pictures of him even now, it’s hard to imagine that he was in fact so full of life before because all that gets embedded in your head is the sickness.
Unfortunately for my Dad, his breathing muscles were the first to be affected and of course kept rapidly getting worse. You curse your education because you know after reading all the literature exactly how death occurs. My Dad’s was no different. He developed a minor respiratory infection which we thought antibiotics would help. Two days later, he couldn’t breathe at all without his Bi-Pap machine and so I called the Ambulance right away. Again, you curse your education because I knew what was coming … I knew that this would be the last time he would leave his home.
Two days later in the hospital, my Dad still could not breathe on his own and months earlier made his intentions known that he did not want to live life on a ventilator. He was in a lot of discomfort and the doctor advised us that the Bi-Pap was essentially a form of life support. We knew that this was not what Dad wanted. As such, we made the painful decision to have the doctors remove his mask.
We all held his hands when the morphine was administered and the mask from the machine was removed. Within three minutes, he breathed his last breath and drifted away without ever opening his eyes. The whole process, minute by minute, is etched into my brain - of course, thinking about it wells my eyes with tears every time.
Like many of you on this forum, I struggle everyday with grief and guilt, but at the same time, I am comforted by the fact that my Dad exited this life on his terms and at peace.
My condolences to all of you have lost loved ones from this terrible disease.