Lostbutlearning
New member
- Joined
- Apr 23, 2024
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 09/2022
- Country
- US
- State
- IL
- City
- Ringwood
My wife was diagnosed with bulbar onset ALS in September of 2022. Since her diagnosis, she has lost the ability to eat, drink, talk, and walk. She has a feeding tube, & uses a Bipap for 6-8 hours every night which helps tremendously.
Her hand neuropathy
has advanced to the point where she can barely perform her own dental/oral care. I purchased a suction toothbrush which will help me prevent her choking when I transition to performing all her oral care.
We use a Hoyer lift for all transfers except her morning get out of bed routine. For that, we use a gait belt and perform a pivot transfer from her sitting on the side of the bed onto the commode.
We also obtained some adaptive clothing to help simplify transfers.
We also have a PureWick device to help alleviate the need to do potty transfers in the middle of the night. It is a very useful machine, but it can take time to adapt to and is expensive to operate since each external catheter costs around $6.00). She is still trying to adapt to it.
I’m wondering how other CALS have delt with these challenges. Things like dental/oral hygiene, transfers, clothing for your PALS, potty needs, communicating spontaneously during transfers ect., or at times when she can’t easily type on her phone or use her eye gaze device.
This is all new territory for me (as the illness progresses), so any practical information regarding these topics would be appreciated.
I have private pay care giver assistance every day from 8:00 AM - 2:00 PM, and evenings Mon- Fri from 8:00 PM -11:00 PM. I’m solo on weekend nights.
My wife is extremely positive and patient, which helps ease the challenges of caregiving. I’m not handling it so well, which is why I elected to spend the money on care giver assistance. If I didn’t, I’d most likely have significant mental and physical issues of my own to deal with.
Thank you for your input.
Her hand neuropathy
has advanced to the point where she can barely perform her own dental/oral care. I purchased a suction toothbrush which will help me prevent her choking when I transition to performing all her oral care.
We use a Hoyer lift for all transfers except her morning get out of bed routine. For that, we use a gait belt and perform a pivot transfer from her sitting on the side of the bed onto the commode.
We also obtained some adaptive clothing to help simplify transfers.
We also have a PureWick device to help alleviate the need to do potty transfers in the middle of the night. It is a very useful machine, but it can take time to adapt to and is expensive to operate since each external catheter costs around $6.00). She is still trying to adapt to it.
I’m wondering how other CALS have delt with these challenges. Things like dental/oral hygiene, transfers, clothing for your PALS, potty needs, communicating spontaneously during transfers ect., or at times when she can’t easily type on her phone or use her eye gaze device.
This is all new territory for me (as the illness progresses), so any practical information regarding these topics would be appreciated.
I have private pay care giver assistance every day from 8:00 AM - 2:00 PM, and evenings Mon- Fri from 8:00 PM -11:00 PM. I’m solo on weekend nights.
My wife is extremely positive and patient, which helps ease the challenges of caregiving. I’m not handling it so well, which is why I elected to spend the money on care giver assistance. If I didn’t, I’d most likely have significant mental and physical issues of my own to deal with.
Thank you for your input.