Augustmoon
Member
- Joined
- Aug 28, 2014
- Messages
- 17
- Reason
- Loved one DX
- Country
- US
- State
- Delaware
- City
- Hockessin
Hi all,
I've posted a few of my concerns about my Dad, and I thank you all for reading and responding.
This new issue is quite awful. My dad was diagnosed with ALS in August 2014. He seemed to have "a light case" at that time, but has since developed quite a bit of difficulty breathing. He declined a feeding tube in March, and, a few weeks ago- declined a tracheotomy as well. When his primary care doc learned that he declined the tracheotomy, she suggested he begin hospice care. He agreed- and signed on with hospice on May 6 2015. He is taking morphine for air hunger- but is in no pain.
Once hospice came on board- my parents, who are 79 years old, felt comfortable with the services offered- especially because they are in a remote location- and for whatever reason, hospice offers better care, closer to their home- than does the closest ALS center.
But here is the awful part. Back in March 2015, my Dad began the laborious process of getting a motorized chair from the ALS center in Miami. It took a lot of phone calls, and emails to get things rolling. It seemed like the ALS Miami center was just not user friendly. But finally, the motorized chair seemed to be in range. Just when it seemed that he was finally on track to receive his own custom chair- he got a letter denying him the chair because he opted for hospice 2 weeks ago- even though the paperwork and measurements for the custom motorized chair were done over 2 months ago. Apparently ALS patients are not allowed to have motorized chairs once they are on hospice. This is so awful- my Dad needs the chair to sit comfortably, to rest comfortably with his BiPap, and to move around his house, and to go out in the world. Thankfully, he has use of a loaner chair, which unfortunately does not fit his size, from the local ALS loaner closet. Now he understands that he may have to begin paying out of pocket monthly for that. And all the time spent negotiating the custom chair, and driving 200 miles for measurements of a custom chair have been in vain. My parents just had a $4,000 wheelchair ramp and modifications done to their home. They secured a $40,000 wheelchair van to use.
Even though, as a rule, hospice doesn't go for wheelchairs- isn't the motor chair for ALS different? This chair provides so many more comforts than simple transportation. My dad needs the chair to sit in and eat, and to rest, and to move by himself. Wow- he was so close to getting a custom chair. Now it seems lost. Does anyone have any knowledge of this particular issue?
I've posted a few of my concerns about my Dad, and I thank you all for reading and responding.
This new issue is quite awful. My dad was diagnosed with ALS in August 2014. He seemed to have "a light case" at that time, but has since developed quite a bit of difficulty breathing. He declined a feeding tube in March, and, a few weeks ago- declined a tracheotomy as well. When his primary care doc learned that he declined the tracheotomy, she suggested he begin hospice care. He agreed- and signed on with hospice on May 6 2015. He is taking morphine for air hunger- but is in no pain.
Once hospice came on board- my parents, who are 79 years old, felt comfortable with the services offered- especially because they are in a remote location- and for whatever reason, hospice offers better care, closer to their home- than does the closest ALS center.
But here is the awful part. Back in March 2015, my Dad began the laborious process of getting a motorized chair from the ALS center in Miami. It took a lot of phone calls, and emails to get things rolling. It seemed like the ALS Miami center was just not user friendly. But finally, the motorized chair seemed to be in range. Just when it seemed that he was finally on track to receive his own custom chair- he got a letter denying him the chair because he opted for hospice 2 weeks ago- even though the paperwork and measurements for the custom motorized chair were done over 2 months ago. Apparently ALS patients are not allowed to have motorized chairs once they are on hospice. This is so awful- my Dad needs the chair to sit comfortably, to rest comfortably with his BiPap, and to move around his house, and to go out in the world. Thankfully, he has use of a loaner chair, which unfortunately does not fit his size, from the local ALS loaner closet. Now he understands that he may have to begin paying out of pocket monthly for that. And all the time spent negotiating the custom chair, and driving 200 miles for measurements of a custom chair have been in vain. My parents just had a $4,000 wheelchair ramp and modifications done to their home. They secured a $40,000 wheelchair van to use.
Even though, as a rule, hospice doesn't go for wheelchairs- isn't the motor chair for ALS different? This chair provides so many more comforts than simple transportation. My dad needs the chair to sit in and eat, and to rest, and to move by himself. Wow- he was so close to getting a custom chair. Now it seems lost. Does anyone have any knowledge of this particular issue?