Kgoss
New member
- Joined
- Feb 20, 2022
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 9/2020
- Country
- US
- State
- ID
- City
- Kendrick
Hey Everyone!
This is my first post- Please bear with me if I post in the wrong group or this is already discussed.
My mom has bulbar onset ALS, she was diagnosed late 2020. Between then and now, my dad quit his job to care for her, my parents sold their home, moved a state away, into my home with my husband, 2 little boys and I so we could help care for them.
I don't believe she ever accepted her diagnosis, and for a variety of reasons, she no DNR in place, no end of life plans, nothing in paper. When she could speak, she would fight viciously when we tried to discuss plans or what she wanted. She refused to use most interventions that were given to her, such as bipaps, Cpap, PT, OT, and has resisted most machines/adaptive aids/ care, and refuses to communicate. Because of this, she now has symptoms of permanent damage from lack of oxygen.
Where she is now: cannot speak, can use a writing board but won't.. prefers DIY sign language. What she does write is often nonsensical. She cannot walk, adjust herself in any way, wipe, and attempts to hit, scratch, and throw herself down when my dad gives her a shower. This weekend, she threatened to threw herself on the floor if we repositioned her to relieve her bed sores.
She has a feeding tube, which she uses well. Insomnia, bed sores, hemorrhoids, she has lots of difficulties to manage. This weekend, she's asked me twice about where her dad is ( He's been dead for over 20 years) and clarified several times she meant her dad. She writes that she thinks she hears his voice.
She uses oxygen 24/7, on a variety of over the counter meds, and Rilozole.
Tomorrow, 2 of my siblings are flying in to discuss a care facility for mom... I guess the point of this post is, I would love direction here...?
1) Did anybody else have a similar experience that led to outside care?
2) how the heck is the best way to bring that up? My dad and I have had brief conversations about it, but I think he's holding on to the hope that she'll pass away at home. He's exhausted from her care every 30 mins, and every hour at night. Poor man, he tries so hard... but her care is very overwhelming, since she's so combative and resistant. At this point he's started falling and tripping from exhaustion.
3) did anyone experience a better quality of life after moving their PALS to outside care?
4) does this sound end stage and we should just ride it out?
Thanks so much, I appreciate any input..!
This is my first post- Please bear with me if I post in the wrong group or this is already discussed.
My mom has bulbar onset ALS, she was diagnosed late 2020. Between then and now, my dad quit his job to care for her, my parents sold their home, moved a state away, into my home with my husband, 2 little boys and I so we could help care for them.
I don't believe she ever accepted her diagnosis, and for a variety of reasons, she no DNR in place, no end of life plans, nothing in paper. When she could speak, she would fight viciously when we tried to discuss plans or what she wanted. She refused to use most interventions that were given to her, such as bipaps, Cpap, PT, OT, and has resisted most machines/adaptive aids/ care, and refuses to communicate. Because of this, she now has symptoms of permanent damage from lack of oxygen.
Where she is now: cannot speak, can use a writing board but won't.. prefers DIY sign language. What she does write is often nonsensical. She cannot walk, adjust herself in any way, wipe, and attempts to hit, scratch, and throw herself down when my dad gives her a shower. This weekend, she threatened to threw herself on the floor if we repositioned her to relieve her bed sores.
She has a feeding tube, which she uses well. Insomnia, bed sores, hemorrhoids, she has lots of difficulties to manage. This weekend, she's asked me twice about where her dad is ( He's been dead for over 20 years) and clarified several times she meant her dad. She writes that she thinks she hears his voice.
She uses oxygen 24/7, on a variety of over the counter meds, and Rilozole.
Tomorrow, 2 of my siblings are flying in to discuss a care facility for mom... I guess the point of this post is, I would love direction here...?
1) Did anybody else have a similar experience that led to outside care?
2) how the heck is the best way to bring that up? My dad and I have had brief conversations about it, but I think he's holding on to the hope that she'll pass away at home. He's exhausted from her care every 30 mins, and every hour at night. Poor man, he tries so hard... but her care is very overwhelming, since she's so combative and resistant. At this point he's started falling and tripping from exhaustion.
3) did anyone experience a better quality of life after moving their PALS to outside care?
4) does this sound end stage and we should just ride it out?
Thanks so much, I appreciate any input..!
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