I read a lot of these posts and from time to time get some good ideas / suggestions. However, sometimes when reading some of the questions / answers - I feel we are suppose to do everything possible to try to better the person's life with their disease. I'm finally trying to realize this is the course of life-decline-death. I'm beginning to understand we are doing some of the things for ourselves - not necessary for the best interest of the person with the disease.
My husband was originally diagnosed with Parkinson's disease in 2002 (from agent orange - Viet Nam). As the disease has progressed, the neurologists have given a diagnosis of Progressive Supra Nuclear Palsy. He was diagnosed with Mild Cognitive Impairment in 2014 and is scheduled to be retested later this year - as he has obviously declined. He also is clinically blind - as he can no longer open or keep his eyes open. He has been a trooper and never once has said 'why me'. He is not ready to give up on life and still wants to be as active as he can under his circumstances.
I keep him busy most days of the week. For example -- (there is minor variation depending on the day / classes offered throughout the year, etc.)
Monday - he goes to two Parkinson classes at the MAPC (music therapy and boxing)
Tuesday - I try to save Tuesdays for doctors appointments and/or hydrocycling (bike in the pool)
Wednesday - he goes to Ballet Arizona and does a Parkinson's Dance class / then Ability 360 - for a workout
Thursday - he has PT / OT and speech/swallowing therapy
Friday - for cognitive - he goes to the Musical Instrument Museum for a 1.5 hour class and tour rotating with the Phoenix Art Museum for a 1.5 hour class and tour and then comes home for extensive stretching
Saturday - Ability 360 - work out in gym or aerobics workout in the pool
Twice a month - massage (in the home)
Sunday - rest
and then we start all over again
Exercise has always been important to him and then when he was diagnosed with Parkinson's, it was important for him to continue - to help stay as strong as possible.
From time to time, I ask him if he wants to continue to go - or cut back - as it is getting harder and harder for him (and me) to do so. It's not me that is pushing him to go - it is him wanting to go - and not wanting to give up.
I feel his time away from home is good for him - or he would sit at home in front of the tv listening to it (since he can no longer see) or listen to his books on tape. I feel getting out in the car - some interaction with other people (even though it is minimal - as he doesn't talk much any more) is good for him.
However, we all know he (or any of our charges) is/are not getting better or even holding his/their own, but continuing to deteriorate.
When is enough - enough? When do we (as caregivers / carepartners) stop trying so hard and back off. We cannot fix any of this.