Firefly
Active member
- Joined
- Feb 1, 2016
- Messages
- 47
- Reason
- PALS
- Diagnosis
- 12/2015
- Country
- US
- State
- Or
- City
- Portland
Hi everyone,
I had the contractor come out to give me a bid on remodeling my bathroom to make it wheelchair accessible. Not surprisingly, it is very costly.
I live alone and am processing all my options. I've lived in my house for 21 years and would really like to stay here. Right now, I'm fine, still mostly bulbar issues and some right hand weakness. My concern is down the road I will need assistance. I have a great support group but they can only help me with so much. I've been independent my entire life. (I don't even want to ask them for any help). But if down the road I need a higher level of care I cannot ask my friends who really are not qualified.
I would look into home care however, I have a feeling that is going to be very expensive. Unfortunately, I don't have a long term care policy, I will be on Medicare and SSDI next month.
I always said I would NEVER go into an assisted living/nursing home, but I think it would be wise to weigh all my options.
Now for the frustrating news. After I decided to keep an open mind and at least check out some care facilities, I've yet to find a care facility in my city, (which is quite large), who will even accept an AlS patient!
I contacted our ALS director, her response was.....
As far as assisted living facilities or nursing homes go- We tend not to keep a list per se as if we have not personally visited so many of the facilities. https://www.caring.com/ may have information to begin with as well as https://adrcoforegon.org/consite/index.php - here you can search by zip code for facilities.
I was taken aback by this. Not everyone has a spouse or relative who can commit to being a caregiver nor who have the funds for an in home 24 hour care giver.
I feel like I was given this god awful dx and just left out in the cold. In addition, it's very hard to make all these phone calls when you sound like your three sheets to the wind!
Any suggestions or experiences would be GREATLY appreciated.
Thank you all so much!
P.S. how the heck do PM someone? I can't seem to maneuver around this forum very well. :?
I had the contractor come out to give me a bid on remodeling my bathroom to make it wheelchair accessible. Not surprisingly, it is very costly.
I live alone and am processing all my options. I've lived in my house for 21 years and would really like to stay here. Right now, I'm fine, still mostly bulbar issues and some right hand weakness. My concern is down the road I will need assistance. I have a great support group but they can only help me with so much. I've been independent my entire life. (I don't even want to ask them for any help). But if down the road I need a higher level of care I cannot ask my friends who really are not qualified.
I would look into home care however, I have a feeling that is going to be very expensive. Unfortunately, I don't have a long term care policy, I will be on Medicare and SSDI next month.
I always said I would NEVER go into an assisted living/nursing home, but I think it would be wise to weigh all my options.
Now for the frustrating news. After I decided to keep an open mind and at least check out some care facilities, I've yet to find a care facility in my city, (which is quite large), who will even accept an AlS patient!
I contacted our ALS director, her response was.....
As far as assisted living facilities or nursing homes go- We tend not to keep a list per se as if we have not personally visited so many of the facilities. https://www.caring.com/ may have information to begin with as well as https://adrcoforegon.org/consite/index.php - here you can search by zip code for facilities.
I was taken aback by this. Not everyone has a spouse or relative who can commit to being a caregiver nor who have the funds for an in home 24 hour care giver.
I feel like I was given this god awful dx and just left out in the cold. In addition, it's very hard to make all these phone calls when you sound like your three sheets to the wind!
Any suggestions or experiences would be GREATLY appreciated.
Thank you all so much!
P.S. how the heck do PM someone? I can't seem to maneuver around this forum very well. :?