melalthia
Active member
- Joined
- Feb 10, 2010
- Messages
- 56
- Reason
- Loved one DX
- Country
- US
- State
- California
- City
- Boulder Creek
I say this fully aware that it may offend some, who choose to actually LIVE life with ALS. But you must understand, my mother chose not to and this is how she would have worded it.. if she were here.
Penny Cordan
1939-2011
She was diagnosed in February 2010. Her voice had started slurring, and we all thought she had suffered some kind of stroke. My mom never went to doctors and didn't believe in them.. so getting her to UCSF was a challenge to say the least. It didn't help our case, when our neurologist came back and told us she had early symptoms of a MND. It was devastating because they couldn't even tell us which MND she might have. They did try to persuade my mom to join their research project which was the WRONG thing to do, because as soon as my mom read she would need to donate her brain after passing.. it completely turned her off and she never went back for any follow up testing.
Her children were devastated. My mom was poor, with no health insurance and a fiercely independent personality.. how would she cope? An avid researcher, I immediately went on the offense; learning everything I could about ALS and what we would need to expect. I joined these forums and became an active participant.. rabidly soaking up information like a sponge so i would know how to cope and deal with what was to come. My mom, chose a different route. She learned a little bit and then went into denial. She declared no interventions, especially a PEG tube. She had no interested in going to group therapy, or talking to anyone associated with ALS.
It was difficult but we agreed. . I have a grandmother unit on my property and we moved her in so she wouldn't have to worry about rent and utilities and we could keep an eye out for her without invading her privacy. She had always wanted to travel and never had money to do so.. .so the family pooled our resources and we all went to France for 3 weeks. I personally spent a good chunk of my 401k savings to give it to her.
It was a fight. We felt so alone because she often hid signs of progression from us and she refused to talk about interventions even though it was obvious she was losing weight. When it was clear she couldn't take care of herself anymore, she finally allowed us to help her and call Hospice. Once we did, it went very fast. Last Wednesday my mom passed comfortably, surrounded by her own things with her family. I could relay the trials and tribulations we had as caregivers.. battling with IHSS for more hours.. trying to hire caregivers and have them frightened away once they actually met mom and saw how bad off she was....going from 0 to 60 in the matter of days. She was ALWAYS hungry.. and I would be making and reMaking her food.. trying to get it the right temperature.. the right consistency so she could actually get it down. In the end, the only thing she could consume were Root Beer Floats. It was horrific. We felt completely behind the curve at every turn. I really thought it would break my family.
But in the end, she died as she lived. Completely stubborn and head strong and absolutely committed to not submitting to this evil disease. She died peacefully, and not in any pain. She died knowing she was loved because we as a family rallied in a herculean attempt to do what she wished. Even when we didn't agree. It was really fast.. but that's what she wanted. She wanted to live her way, un-compromised. I used to think she was a coward for choosing isolation and she used to say continually how she was a coward because she couldn't face the future with this disease... but now i think differently. It took amazing courage to NOT surround herself with community and lean on others for support. Right or wrong, she didn't want to be associated with ALS so regardless of the hurdles with her body and what reality made her endure... she chose to try and live like she always had. I know i couldn't have done that.
So my lovely mother.. I am a peace knowing you are somewhere else.. eating all the gorgeous food you used to miss so much and laughing and talking with people the way you wanted to be. I know most of all you missed having deep conversations and being able to explain yourself fully. I know you wanted to see your Father again.. who had died when you were only 16.
There were times, when I felt I was toll keeper to the river Styx. I was trying to guide my mom to the island but the fog was so thick... I couldn't possibly know where I was going. Now I feel at peace and a weight has lifted from my shoulders . I didn't know how to guide you. but I gave it my all to try and help and to make sure you weren't alone and uncomfortable. I miss you terribly.. but I can now move forward. I feel like if nothing else... it was clean. I hope mom, where ever you are.. you are even more passionate about Life than you were before ALS. I hope you are unashamedly defiant and unafraid. And I can promise, your grandkids will never forget you. Love you...
Penny Cordan
1939-2011
She was diagnosed in February 2010. Her voice had started slurring, and we all thought she had suffered some kind of stroke. My mom never went to doctors and didn't believe in them.. so getting her to UCSF was a challenge to say the least. It didn't help our case, when our neurologist came back and told us she had early symptoms of a MND. It was devastating because they couldn't even tell us which MND she might have. They did try to persuade my mom to join their research project which was the WRONG thing to do, because as soon as my mom read she would need to donate her brain after passing.. it completely turned her off and she never went back for any follow up testing.
Her children were devastated. My mom was poor, with no health insurance and a fiercely independent personality.. how would she cope? An avid researcher, I immediately went on the offense; learning everything I could about ALS and what we would need to expect. I joined these forums and became an active participant.. rabidly soaking up information like a sponge so i would know how to cope and deal with what was to come. My mom, chose a different route. She learned a little bit and then went into denial. She declared no interventions, especially a PEG tube. She had no interested in going to group therapy, or talking to anyone associated with ALS.
It was difficult but we agreed. . I have a grandmother unit on my property and we moved her in so she wouldn't have to worry about rent and utilities and we could keep an eye out for her without invading her privacy. She had always wanted to travel and never had money to do so.. .so the family pooled our resources and we all went to France for 3 weeks. I personally spent a good chunk of my 401k savings to give it to her.
It was a fight. We felt so alone because she often hid signs of progression from us and she refused to talk about interventions even though it was obvious she was losing weight. When it was clear she couldn't take care of herself anymore, she finally allowed us to help her and call Hospice. Once we did, it went very fast. Last Wednesday my mom passed comfortably, surrounded by her own things with her family. I could relay the trials and tribulations we had as caregivers.. battling with IHSS for more hours.. trying to hire caregivers and have them frightened away once they actually met mom and saw how bad off she was....going from 0 to 60 in the matter of days. She was ALWAYS hungry.. and I would be making and reMaking her food.. trying to get it the right temperature.. the right consistency so she could actually get it down. In the end, the only thing she could consume were Root Beer Floats. It was horrific. We felt completely behind the curve at every turn. I really thought it would break my family.
But in the end, she died as she lived. Completely stubborn and head strong and absolutely committed to not submitting to this evil disease. She died peacefully, and not in any pain. She died knowing she was loved because we as a family rallied in a herculean attempt to do what she wished. Even when we didn't agree. It was really fast.. but that's what she wanted. She wanted to live her way, un-compromised. I used to think she was a coward for choosing isolation and she used to say continually how she was a coward because she couldn't face the future with this disease... but now i think differently. It took amazing courage to NOT surround herself with community and lean on others for support. Right or wrong, she didn't want to be associated with ALS so regardless of the hurdles with her body and what reality made her endure... she chose to try and live like she always had. I know i couldn't have done that.
So my lovely mother.. I am a peace knowing you are somewhere else.. eating all the gorgeous food you used to miss so much and laughing and talking with people the way you wanted to be. I know most of all you missed having deep conversations and being able to explain yourself fully. I know you wanted to see your Father again.. who had died when you were only 16.
There were times, when I felt I was toll keeper to the river Styx. I was trying to guide my mom to the island but the fog was so thick... I couldn't possibly know where I was going. Now I feel at peace and a weight has lifted from my shoulders . I didn't know how to guide you. but I gave it my all to try and help and to make sure you weren't alone and uncomfortable. I miss you terribly.. but I can now move forward. I feel like if nothing else... it was clean. I hope mom, where ever you are.. you are even more passionate about Life than you were before ALS. I hope you are unashamedly defiant and unafraid. And I can promise, your grandkids will never forget you. Love you...