starente15
Senior member
- Joined
- Oct 27, 2014
- Messages
- 809
- Reason
- Lost a loved one
- Diagnosis
- 10/2017
- Country
- US
- State
- NJ
- City
- Northern
Since diagnosis last year, my parents have had a lot of difficulty accepting the situation, which is understandable, and have often been quick to say no to things without understanding or explanation.
A month after his diagnosis, I told my father about DPS and how it might help him. I brought it up at the first clinic visit and while the doctor didn't promote it, he said he didn't discourage it if a patient wanted to investigate. The immediate response was No.
Today, nine months later, my heart broke when my brother told me that Hospice explained the options he has today. He asked about DPS and was told that the time had passed and it was too late. He also asked about breathing exercises which he never did when PT had recommended them. I can only imagine how desperate he must feel at this point and in searching for a different alternative.
I've tried explaining that many things associated with this disease are time bound and there is a point of no return for some, i.e., speech banking. Unfortunately, we have been behind on everything we have ever needed from a cough assist, to VA benefits, a power wheelchair and an accessible bath.
I'm hoping this can help others realize how important it is to take all the information available, do your home work, and be proactive and persistent. Ask for what you want and make sure you get what you need.
These were my parents decisions and I was unable to influence them differently but I can be ok with it knowing I tried and did what I could.
A month after his diagnosis, I told my father about DPS and how it might help him. I brought it up at the first clinic visit and while the doctor didn't promote it, he said he didn't discourage it if a patient wanted to investigate. The immediate response was No.
Today, nine months later, my heart broke when my brother told me that Hospice explained the options he has today. He asked about DPS and was told that the time had passed and it was too late. He also asked about breathing exercises which he never did when PT had recommended them. I can only imagine how desperate he must feel at this point and in searching for a different alternative.
I've tried explaining that many things associated with this disease are time bound and there is a point of no return for some, i.e., speech banking. Unfortunately, we have been behind on everything we have ever needed from a cough assist, to VA benefits, a power wheelchair and an accessible bath.
I'm hoping this can help others realize how important it is to take all the information available, do your home work, and be proactive and persistent. Ask for what you want and make sure you get what you need.
These were my parents decisions and I was unable to influence them differently but I can be ok with it knowing I tried and did what I could.