ChildofALS
New member
- Joined
- Mar 21, 2017
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 08/2015
- Country
- US
- State
- TN
- City
- Crossville
Hello NMD.
I am in your shoes exactly, with the exception that I'm up close and personal with all the difficulties that come with disease.
I can appreciate your fear and your honest question, so I'll share with you my personal experience.
My dad was diagnosed in August of 2015.
Some of the scariest and heart breaking moments of my life followed.
By far, the most painful part of this experience was the rage and upset that my mom experienced after Dad's diagnosis.
My mom has refused to accept that my dad is a grown man capable of making his own decisions.
My dad had peg tube inserted in March of 2015, prior to ALS diagnosis and after having stroke like symptoms and swallowing difficulties. He refused tube at first but was brow beaten into it with the assurance it would be in place for only 30-60 days.
When my dad came home from rehab, his health took a sharp decline. After that my mom refused him solid foods and eventually refused him any nutrition that wasn't given via tube. This was most distressing to my dad. Food was one of the last pleasures he had in this life. He often told me, immediately after a choking episode, that this last pleasure and comfort was worth the risk and discomfort of choking.
This disease is a definite death sentence for most. I believe our job as caretakers and loved ones, is not life saving measures but comfort care.
This forced nutrition has stripped my dad of the last shred of dignity and comfort my dad had left in life and prolonged his misery against his will.
PLEASE ask your family to set aside their own fear and respect your father's wishes. My personal relationship with my mom has taken a huge hit because if this. ....right at the moment we needed each other the most.
In effect, with this diagnosis, I feel as if Ive lost both my parents.
I sit, at this very moment, holding dad's hand as he is in the process of drawing his last.
My heart goes out to you.
I am in your shoes exactly, with the exception that I'm up close and personal with all the difficulties that come with disease.
I can appreciate your fear and your honest question, so I'll share with you my personal experience.
My dad was diagnosed in August of 2015.
Some of the scariest and heart breaking moments of my life followed.
By far, the most painful part of this experience was the rage and upset that my mom experienced after Dad's diagnosis.
My mom has refused to accept that my dad is a grown man capable of making his own decisions.
My dad had peg tube inserted in March of 2015, prior to ALS diagnosis and after having stroke like symptoms and swallowing difficulties. He refused tube at first but was brow beaten into it with the assurance it would be in place for only 30-60 days.
When my dad came home from rehab, his health took a sharp decline. After that my mom refused him solid foods and eventually refused him any nutrition that wasn't given via tube. This was most distressing to my dad. Food was one of the last pleasures he had in this life. He often told me, immediately after a choking episode, that this last pleasure and comfort was worth the risk and discomfort of choking.
This disease is a definite death sentence for most. I believe our job as caretakers and loved ones, is not life saving measures but comfort care.
This forced nutrition has stripped my dad of the last shred of dignity and comfort my dad had left in life and prolonged his misery against his will.
PLEASE ask your family to set aside their own fear and respect your father's wishes. My personal relationship with my mom has taken a huge hit because if this. ....right at the moment we needed each other the most.
In effect, with this diagnosis, I feel as if Ive lost both my parents.
I sit, at this very moment, holding dad's hand as he is in the process of drawing his last.
My heart goes out to you.
