Parkinson's Disease Support Group

Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...

509 Members
3,338 Posts
0 Online
Brain & Nervous System
/ Parkinson's Disease Support Group

End Stage Parkinson's

parkdaughter
parkdaughter

Thank you for this group.  I am not sure where else to let my feelings go out into the universe.  My dad's father had died with Parkinson's at the age of 86.  My father - who admittedly- has refused to go to a doctor for the last 20 years, I believe is in end-stage Parkinson's.  I am sure there will be pushback on the fact that he has refused to take any medicine, but this is the choice of both my parents.  


Dad is living with full delusions and hallucinations, sleeps most of the day, and wanders at night trying to make coffee or check his car (we had to take the battery out, so he doesn't drive), he gets violent against my 80-year-old mother and special needs brother who live with him. We have taken the knives, bats, scissors out of the house.  He had a regular delusion that he is trapped in his clothes and cuts himself out. His hallucinations are usually about people outside watching.  He can hardly stand, but can still eat/swallow, and has a morning routine of "stretching and working out" and then he goes to sleep for the.  I noticed his tremor about 15 years ago.  The edema in both of his ankles is severe.  


My question(s) - this end-stage - I want to make sure he is comfortable and that my brother and mother are safe.  How long does this go on?  My mom refuses to place him in an assisted living.  He is hallowed out and not my dad anymore.  I know that I am rambling.. but I feel like the end is near, but want to support the whole family through this horrible stage.  



FBMBoomer
FBMBoomer
A little late with a reply. My wife has parkinsons. I have been treating her with 4 different therapies. She is doing well now but my treatment plan is likely a delaying tactic. It seems to me that your father needs to be placed, perhaps he already has been placed in a home where he can be safe and so can his family. I had an uncomfortable conversation with my wife. I told her that her symptoms will likely come back and that she must be prepared to go into a home. She did not want to hear that. It needed to be said. This will be very traumatic for both of us. We have been close since we were children. However, I am unwilling to keep her close to me if that means she could be in danger. I cannot watch her 24/7. Right now we have a very good quality of life together. I feel so fortunate to have been able to live with someone I love and who loves me back almost our entire lives. I feel grateful for the time we have been given. We have been together since the 50s except for my time overseas in the military. It was so good to return to her loving arms after having a pretty bad time over there. So, the end of life comes to us all. I could not have had a better life companion.

I realize how awful your situation must be, or maybe I cannot really know how bad it is. Your description sound pretty bad.

I don't think I would want to go on if I lost her. I have prepared for this eventuality. I am almost 78 yo and we have had a wonderful 70 years together. How could I ask for more?