starente15
Senior member
- Joined
- Oct 27, 2014
- Messages
- 809
- Reason
- Lost a loved one
- Diagnosis
- 10/2017
- Country
- US
- State
- NJ
- City
- Northern
In case this can benefit anyone new to the forum, I'd like to share our experience in getting things prior to needing them.
My father never accepted what was happening and chose a "wait and see" approach to most things. Even with my annoying prodding to get things in motion before there was a need, neither of my parents wanted to do it. I would strongly recommend reading the stickies that provide guidance around things that need to be considered and act on them as soon as possible. My father has never become paralyzed but is bed bound due to his inability to breathe.
Veteran's benefits - My father is a veteran but did not want to pursue applying for the benefits available to him. About 7 months after his diagnosis he finally agreed, but only to the part where there was financial compensation. It took about 3 months to work through the red tape, but the benefits were retroactive to his diagnosed date. There are many grants available to offset or eliminate expenses. DON'T WAIT ON THESE.
Voice banking - I brought this up early on and made sure he understood why it was important to do it at that time and how it would be used. He had no interest and after about 6 months we were at the point of no return. Toward the end, communication has become extremely difficult. I tried a free Apple app, we printed a double sided card with common phrases but eventually settled on a write board. His writing is difficult to read and we cause a lot of frustration trying to understand him.
Bathroom remodel - This was a big pain point as my mother refused to "knock down walls" or make any changes to the home/furniture layout for the longest time. It took 8 weeks to get a contractor and complete the work. We paid out of pocket vs. using a VA grant because that would have taken longer and we were once again at the point of no return in stepping over a foot high bathtub ledge. He used the new shower less than a dozen times before becoming bed bound.
Bed - My father needed to sleep propped up. A Craftmatic adjustable bed solves this problem, but even though they had room, they got a Queen vs. King. The Queen adjusts the entire bed while the king allows each person to adjust their side. He needed the bottom raised to prevent sliding down and she ended up scrunched in the middle. He would avoid raising the bottom to keep her comfortable vs. himself.
Power wheelchair, ramps, adaptive van, doorways - The VA assists tremendously with all of these expenses. By the time we started the paperwork, wove our way through the red tape and followed up on unreturned calls or calls to the wrong people it was pretty much too late.
Instead of waiting 3 months for the chair, he took a new one that was recently returned and had it modified. It took 3 weeks and in the meantime I borrowed one from the loan closet, we got the ramp installed and the van purchased. He rode the loaner outside four times. His chair came and he used it inside a total of 2 weeks before becoming bed bound. My brother and I did a test run of locking it down in the van and planning to get him out for a ride but he was never able to go out in it.
During this time he had to move from his bed to a hospital bed in another room that had a narrower doorway. We widened the doorway, paying out of pocket again, and three days later his bed had to move to the living room. The interim move was made because again, we didn't want to move things or put them in storage.
I wish he had been able to benefit more from the things that are available to make life a little easier. In the end, it was their decision and I could only offer advice on what I knew or had learned from others experiences.
My father never accepted what was happening and chose a "wait and see" approach to most things. Even with my annoying prodding to get things in motion before there was a need, neither of my parents wanted to do it. I would strongly recommend reading the stickies that provide guidance around things that need to be considered and act on them as soon as possible. My father has never become paralyzed but is bed bound due to his inability to breathe.
Veteran's benefits - My father is a veteran but did not want to pursue applying for the benefits available to him. About 7 months after his diagnosis he finally agreed, but only to the part where there was financial compensation. It took about 3 months to work through the red tape, but the benefits were retroactive to his diagnosed date. There are many grants available to offset or eliminate expenses. DON'T WAIT ON THESE.
Voice banking - I brought this up early on and made sure he understood why it was important to do it at that time and how it would be used. He had no interest and after about 6 months we were at the point of no return. Toward the end, communication has become extremely difficult. I tried a free Apple app, we printed a double sided card with common phrases but eventually settled on a write board. His writing is difficult to read and we cause a lot of frustration trying to understand him.
Bathroom remodel - This was a big pain point as my mother refused to "knock down walls" or make any changes to the home/furniture layout for the longest time. It took 8 weeks to get a contractor and complete the work. We paid out of pocket vs. using a VA grant because that would have taken longer and we were once again at the point of no return in stepping over a foot high bathtub ledge. He used the new shower less than a dozen times before becoming bed bound.
Bed - My father needed to sleep propped up. A Craftmatic adjustable bed solves this problem, but even though they had room, they got a Queen vs. King. The Queen adjusts the entire bed while the king allows each person to adjust their side. He needed the bottom raised to prevent sliding down and she ended up scrunched in the middle. He would avoid raising the bottom to keep her comfortable vs. himself.
Power wheelchair, ramps, adaptive van, doorways - The VA assists tremendously with all of these expenses. By the time we started the paperwork, wove our way through the red tape and followed up on unreturned calls or calls to the wrong people it was pretty much too late.
Instead of waiting 3 months for the chair, he took a new one that was recently returned and had it modified. It took 3 weeks and in the meantime I borrowed one from the loan closet, we got the ramp installed and the van purchased. He rode the loaner outside four times. His chair came and he used it inside a total of 2 weeks before becoming bed bound. My brother and I did a test run of locking it down in the van and planning to get him out for a ride but he was never able to go out in it.
During this time he had to move from his bed to a hospital bed in another room that had a narrower doorway. We widened the doorway, paying out of pocket again, and three days later his bed had to move to the living room. The interim move was made because again, we didn't want to move things or put them in storage.
I wish he had been able to benefit more from the things that are available to make life a little easier. In the end, it was their decision and I could only offer advice on what I knew or had learned from others experiences.
