KenC
New member
- Joined
- Aug 19, 2012
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 04/2011
- Country
- US
- State
- CA
- City
- Palmdale
My wife is 61 years old. Her life was always on the go and deeply involved with our children’s and grand children’s activities. She was the go to person that everyone depended on for their own personal needs. She was…. is simply a wonderful person.
In or around November of 2010, she began to experience weakness and the loss of mobility in her right index finger. After many medical exams it was discovered that she had three vertebrae severely compressed and on March 10, 2011, had surgery to fuse C5 thru C7 in her neck. Although the surgery was absolutely necessary her sense of weakness and declining mobility continued. Further medical examinations were conducted at the Loma Linda University Medical Center, Neurology Department.
On April 10, 2011, she was officially diagnosed with ALS
Our family was devastated, our ability to even understand what this meant was nil at best. Because family and friends wanted to know how she was it caused us to repeat all the facts, fears and hopes over and over again causing us to dwell deeper and deeper into the reality of her pending death. Rather then continue with a one on one explanation I emailed my feelings and explanations in one letter.
The following, in part, was my response. It does not address my personal fears of losing her or how it has changed my life and now my uncertain future. I have been her primary caregiver since day one and as others have mentioned in their blogs have not had one good night of sleep.
‘ALS is a horrible insidious disease. It takes away every aspect of one’s physical abilities. It causes you to be completely dependent on someone to care for you. It causes depths of humiliation that I never want to experience. It takes away your desire to be around your friends because you are now different. It does all this without ever taking away or reducing your mental awareness of your condition. It's slow in reaching its end. When it reduces you to a useless shell it keeps your mind totally aware of your body's condition. It challenges the very essence of your faith. It causes you to question if there is a God and at the same time causes you to beg that He reveal his presence.
It has taken away my wife’s physical abilities, her ability to speak and now her ability to swallow. The next phase of this hideous disease is now affecting her breathing.
Kim still has moments of unprovoked laughter and tears. When she cries we cry. When she laughs we laugh. She still apologizes for being an inconvenience to us and always says thank you for the smallest of care.
She is and has been reluctant to be around people but yet forces herself to be available so as not to offend anyone.
ALS doesn't allow for anyone to know how much time they have. It is a death sentence without an execution date. Unless my wife changes her mind, she is not allowing for life support if and when she is unable to breath. She is no longer able to eat or speak and is now fed through a G-tube.
We don't delude ourselves of ALS's final outcome... we just don't speak directly to it. YET!’
I love my wife and it kills me that there is nothing I can do to make this go away. I know I’m not alone with these thoughts but I know the pain I feel is common with your personal situation. I now pray that my wife be strengthened in her faith and that she is not afraid to meet our Lord in the transition from “life to death to life” she will soon be making. I also pray for you and yours!
Ken
In or around November of 2010, she began to experience weakness and the loss of mobility in her right index finger. After many medical exams it was discovered that she had three vertebrae severely compressed and on March 10, 2011, had surgery to fuse C5 thru C7 in her neck. Although the surgery was absolutely necessary her sense of weakness and declining mobility continued. Further medical examinations were conducted at the Loma Linda University Medical Center, Neurology Department.
On April 10, 2011, she was officially diagnosed with ALS
Our family was devastated, our ability to even understand what this meant was nil at best. Because family and friends wanted to know how she was it caused us to repeat all the facts, fears and hopes over and over again causing us to dwell deeper and deeper into the reality of her pending death. Rather then continue with a one on one explanation I emailed my feelings and explanations in one letter.
The following, in part, was my response. It does not address my personal fears of losing her or how it has changed my life and now my uncertain future. I have been her primary caregiver since day one and as others have mentioned in their blogs have not had one good night of sleep.
‘ALS is a horrible insidious disease. It takes away every aspect of one’s physical abilities. It causes you to be completely dependent on someone to care for you. It causes depths of humiliation that I never want to experience. It takes away your desire to be around your friends because you are now different. It does all this without ever taking away or reducing your mental awareness of your condition. It's slow in reaching its end. When it reduces you to a useless shell it keeps your mind totally aware of your body's condition. It challenges the very essence of your faith. It causes you to question if there is a God and at the same time causes you to beg that He reveal his presence.
It has taken away my wife’s physical abilities, her ability to speak and now her ability to swallow. The next phase of this hideous disease is now affecting her breathing.
Kim still has moments of unprovoked laughter and tears. When she cries we cry. When she laughs we laugh. She still apologizes for being an inconvenience to us and always says thank you for the smallest of care.
She is and has been reluctant to be around people but yet forces herself to be available so as not to offend anyone.
ALS doesn't allow for anyone to know how much time they have. It is a death sentence without an execution date. Unless my wife changes her mind, she is not allowing for life support if and when she is unable to breath. She is no longer able to eat or speak and is now fed through a G-tube.
We don't delude ourselves of ALS's final outcome... we just don't speak directly to it. YET!’
I love my wife and it kills me that there is nothing I can do to make this go away. I know I’m not alone with these thoughts but I know the pain I feel is common with your personal situation. I now pray that my wife be strengthened in her faith and that she is not afraid to meet our Lord in the transition from “life to death to life” she will soon be making. I also pray for you and yours!
Ken
