Status
Not open for further replies.

starente15

Senior member
Joined
Oct 27, 2014
Messages
807
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.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,538
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Star, you've come a long way in accepting that you can only offer help, and that your parents are responsible for the consequences of their own decisions. You are doing a WONDERFUL job. You are right--if our experiences can serve as examples to others, then our efforts were not in vain.
 

starente15

Senior member
Joined
Oct 27, 2014
Messages
807
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
Thank you.

I wasn't there for the visit but it sounds like he's accepted getting help with bathing and taking anti-anxiety medication. I hope he'll be more comfortable in the upcoming weeks now that some of this is falling into place. By next week the bath remodel should be done. Looks like it's coming along good. I planned out the whole thing with help from you guys and Google. :)
 

Attachments

Status
Not open for further replies.
Top