Libbyc
New member
- Joined
- Jun 14, 2018
- Messages
- 8
- Reason
- CALS
- Diagnosis
- 05/2018
- Country
- US
- State
- Oregon
- City
- Portland
Hi, everyone. This is such a wonderful community you all have built. I have learned so much already and am so grateful for this resource.
My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his symptoms were misattributed for some time. He was given 3-6 weeks prior to his vent and peg surgeries (which were just completed), which extends his time hopefully to a year. He is currently in the VA in ICU healing from surgeries.
We are currently exploring options of what to do/where to go next. I have been considering the possibility of helping care for my friend once he leaves the VA, but I honestly don't know how feasible that is. I'm in contact with his social workers, but I'm still unclear what could be covered by the VA in terms of care. Is it at all possible to get 24-nursing care in a private home? The VA won't allow for respite nurses to touch the vent (??) but will cover up to 18 hours per week. How is this possible to do? Even if I am trained to handle the vent, I'm just one person. I'm doing the best I can to think out all scenarios, but honestly, I'm terrified. I have professional experience caregiving, but that can't compare to caring for a loved one. How can you afford to cover 24 hours while not having completely under qualified and/or underpaid people in your home? Is adult foster care the best choice?
I realize I've dumped a ton of questions, and this may or may not be the best place to post this, but please--I need any advice you have the time to give. Regardless of whether he moves into my house or not, I plan to stay involved as long as he'll let me. I just need some guidance in figuring out how best to do that.
Thank you all so much for being here.
My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his symptoms were misattributed for some time. He was given 3-6 weeks prior to his vent and peg surgeries (which were just completed), which extends his time hopefully to a year. He is currently in the VA in ICU healing from surgeries.
We are currently exploring options of what to do/where to go next. I have been considering the possibility of helping care for my friend once he leaves the VA, but I honestly don't know how feasible that is. I'm in contact with his social workers, but I'm still unclear what could be covered by the VA in terms of care. Is it at all possible to get 24-nursing care in a private home? The VA won't allow for respite nurses to touch the vent (??) but will cover up to 18 hours per week. How is this possible to do? Even if I am trained to handle the vent, I'm just one person. I'm doing the best I can to think out all scenarios, but honestly, I'm terrified. I have professional experience caregiving, but that can't compare to caring for a loved one. How can you afford to cover 24 hours while not having completely under qualified and/or underpaid people in your home? Is adult foster care the best choice?
I realize I've dumped a ton of questions, and this may or may not be the best place to post this, but please--I need any advice you have the time to give. Regardless of whether he moves into my house or not, I plan to stay involved as long as he'll let me. I just need some guidance in figuring out how best to do that.
Thank you all so much for being here.