Oy, I don't even know where to start.
My husband has bulbar onset ALS. He has a PEG Tube that he cannot manage on his own anymore due to hand and arm weakness. I dress and shower, him etc. He communicates via iPhone plus an application that he can operate with just his thumb (the iPhone app is great, BTW). He can walk, but not steadily and gets worse every day, uses a manual wheelchair when we (rarely) leave the house. He wants to get a trach/vent when the time comes. He was a stay at home Dad with our kids so does NOT qualify for SSDI or Medicare. All our insurance coverage is through group plan at my work which ends soon, then we can do COBRA for 18 months. He is 47 years old now.
I have been working from home and was just laid off. I probably will not find another work at home job, so will need to not only find a job, but find someone to come to the house to be with him when i am gone, so that he can get dressed, eat via the PEG, etc. The long term care and cost implications absolutely overwhelm me. Nursing home is even more expensive than home care (from what I have read) plus none in our city will take someone with trach/vent. Also, it is my understanding that hospice will not take someone on a invasive vent as it is considered agressive life-sustaining measure.
How can I find a new job (oh, and move in the meantime to someplace without 5 million steps that our current house has), then work full time, plus get him cared for (on my own, no insurance will cover any of this), pay for college for 2 kids and retain my sanity? Probably a rhetorical question, because there are no choices here for me.
Thanks for letting me vent. Any words of wisdom would be welcome.
My husband has bulbar onset ALS. He has a PEG Tube that he cannot manage on his own anymore due to hand and arm weakness. I dress and shower, him etc. He communicates via iPhone plus an application that he can operate with just his thumb (the iPhone app is great, BTW). He can walk, but not steadily and gets worse every day, uses a manual wheelchair when we (rarely) leave the house. He wants to get a trach/vent when the time comes. He was a stay at home Dad with our kids so does NOT qualify for SSDI or Medicare. All our insurance coverage is through group plan at my work which ends soon, then we can do COBRA for 18 months. He is 47 years old now.
I have been working from home and was just laid off. I probably will not find another work at home job, so will need to not only find a job, but find someone to come to the house to be with him when i am gone, so that he can get dressed, eat via the PEG, etc. The long term care and cost implications absolutely overwhelm me. Nursing home is even more expensive than home care (from what I have read) plus none in our city will take someone with trach/vent. Also, it is my understanding that hospice will not take someone on a invasive vent as it is considered agressive life-sustaining measure.
How can I find a new job (oh, and move in the meantime to someplace without 5 million steps that our current house has), then work full time, plus get him cared for (on my own, no insurance will cover any of this), pay for college for 2 kids and retain my sanity? Probably a rhetorical question, because there are no choices here for me.
Thanks for letting me vent. Any words of wisdom would be welcome.