elengeniero
New member
- Joined
- Oct 29, 2007
- Messages
- 3
- Reason
- CALS
- Country
- US
- State
- CA
- City
- San Luis Obispo
Hi fellow CALS,
My name is Ariel. It's been many years since I've posted on this forum but our family has determined we need some help form those that might have more experience than us.
My mother has had ALS for 10 years now. She's completely paralyzed except for eyes and mouth (which have very little muscle control) and has been ventilator dependent for the last 8 years. She lost the ability to use eye tracking software earlier this year due to ALS affecting muscle control in her eye lids and eyes and so we've resorted to using a letter board and "Yes" "No" blinking for communicating with her.
My mother's decision to go on ventilator was made in haste because her disease progressed very rapidly about a year and a half into her diagnosis. Unfortunately we as a family didn't fully research what this life would be like long term. We've always been a very close nit (typical Latino) family and we swore to support our mother's wishes. If her wish was to continue living, we would do whatever it took.
Over the years her care has had to be adjusted as we initially lost professional nursing support (due to her insurance benefits maxing out) as well as privately hired caretakers (mainly due to caretaker burnout). Recently the majority of the care has been provided by my sister and father as they are the ones that live with her. I come take over her care one weekend a month and weeknights when needed.
Recently, despite her inability to physically speak, often time when we communicate with her she lashes out at us and is especially harsh with my father. My poor Dad works a full time job in agriculture and comes home to take care of her but she doesn't seem to acknowledge this. She focuses very strongly on his blunders and mistakes instead of the care and love he's shown her. She also displays an extreme level of emotional lability, crying on a daily basis even after 10 years of this.
Unfortunately it's gotten to the point where I'm seeing this affect my Father and sister's mental and physical well being and have begun researching transferring her to a professional care facility. Personally I'd rather her consider a conversation on intervention with Hospice and palliative care but she's pretty insistent that so long as she displays consciousness, she wants to continue living despite her very low quality of life. I empathize with her and of course love her very much, so I'll respect her wishes however at this point I feel it means we need to transfer her to a Nursing Facility for some time or maybe permanently.
Has anyone had experience with a similar situation? What is the process for transferring a long term vent patient to a Nursing Facility? Is this type of care covered by Medicare or some other type of insurance? (We're in California).
Thank you for any help you can provide.
My name is Ariel. It's been many years since I've posted on this forum but our family has determined we need some help form those that might have more experience than us.
My mother has had ALS for 10 years now. She's completely paralyzed except for eyes and mouth (which have very little muscle control) and has been ventilator dependent for the last 8 years. She lost the ability to use eye tracking software earlier this year due to ALS affecting muscle control in her eye lids and eyes and so we've resorted to using a letter board and "Yes" "No" blinking for communicating with her.
My mother's decision to go on ventilator was made in haste because her disease progressed very rapidly about a year and a half into her diagnosis. Unfortunately we as a family didn't fully research what this life would be like long term. We've always been a very close nit (typical Latino) family and we swore to support our mother's wishes. If her wish was to continue living, we would do whatever it took.
Over the years her care has had to be adjusted as we initially lost professional nursing support (due to her insurance benefits maxing out) as well as privately hired caretakers (mainly due to caretaker burnout). Recently the majority of the care has been provided by my sister and father as they are the ones that live with her. I come take over her care one weekend a month and weeknights when needed.
Recently, despite her inability to physically speak, often time when we communicate with her she lashes out at us and is especially harsh with my father. My poor Dad works a full time job in agriculture and comes home to take care of her but she doesn't seem to acknowledge this. She focuses very strongly on his blunders and mistakes instead of the care and love he's shown her. She also displays an extreme level of emotional lability, crying on a daily basis even after 10 years of this.
Unfortunately it's gotten to the point where I'm seeing this affect my Father and sister's mental and physical well being and have begun researching transferring her to a professional care facility. Personally I'd rather her consider a conversation on intervention with Hospice and palliative care but she's pretty insistent that so long as she displays consciousness, she wants to continue living despite her very low quality of life. I empathize with her and of course love her very much, so I'll respect her wishes however at this point I feel it means we need to transfer her to a Nursing Facility for some time or maybe permanently.
Has anyone had experience with a similar situation? What is the process for transferring a long term vent patient to a Nursing Facility? Is this type of care covered by Medicare or some other type of insurance? (We're in California).
Thank you for any help you can provide.
