WesternRose
New member
- Joined
- Sep 16, 2021
- Messages
- 3
- Reason
- Loved one DX
- Diagnosis
- 08/2021
- Country
- US
- State
- CO
Hi everyone. My PALS is recently diagnosed with Bulbar ALS. She is 79 and lives alone. I’m her niece and live out of state. Her two children live closer but cannot live with her to take care of her.
My PALS has been unable to eat more than a couple bites of food a day for over 6 weeks. She is very weak. I’m sure she’s dehydrated. She is hoping to get a feeding tube ASAP if cleared for the procedure (her breathing is not great). She has a lot of difficulty speaking.
My PALS was given a BIPAP which she’s supposed to be using at night, but can only tolerate it for 5 minutes at a time a few times a day. She also has a cough assist machine that she tried once and hated.
My question is, what type of home healthcare should her kids be looking to get for her? A 24 hour caregiver/personal aide (non-medical) was supposed to start soon. But it seems that she needs more than someone to help her bathe and do light housekeeping. If she’s able to get the feeding tube, she’ll need someone familiar with those to feed her. I would think she needs someone familiar with the BIPAP and cough assist to encourage her to use those and ensure she’s using them properly. Also someone who can check her vitals.
Do those people (not family members) exist? What should we be looking for in a home-HEALTH care aide.
Thanks in advance.
My PALS has been unable to eat more than a couple bites of food a day for over 6 weeks. She is very weak. I’m sure she’s dehydrated. She is hoping to get a feeding tube ASAP if cleared for the procedure (her breathing is not great). She has a lot of difficulty speaking.
My PALS was given a BIPAP which she’s supposed to be using at night, but can only tolerate it for 5 minutes at a time a few times a day. She also has a cough assist machine that she tried once and hated.
My question is, what type of home healthcare should her kids be looking to get for her? A 24 hour caregiver/personal aide (non-medical) was supposed to start soon. But it seems that she needs more than someone to help her bathe and do light housekeeping. If she’s able to get the feeding tube, she’ll need someone familiar with those to feed her. I would think she needs someone familiar with the BIPAP and cough assist to encourage her to use those and ensure she’s using them properly. Also someone who can check her vitals.
Do those people (not family members) exist? What should we be looking for in a home-HEALTH care aide.
Thanks in advance.