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.
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or interest...or just go sit at the library and read and u will find yourself in the stillness 2x a week. Journal while there...read...relax...Find yourself again, but don't expect to find the same person. You have grown within and changed. Look for the new you. And...i would slow down the schedule and be more low key. It is not time to stop. It is time to slow down because he is. He may just be trying to keep making himself because he thinks u want him to more than u may realize. He may be trying to live up to the man he always was because he thinks that is who u love. Let him know less is more...Less striving and that what u truly love is yall together and what u have...not who he is...but who u r together.
Hope this helps at least somewhat. I
am walking this road with my mom. My Mom told me one day, "Honey, stop trying so hard. I am still here. Is that not enough? Just let me do what I can and finish this journey holding your hand. It's enough. Don't try so hard. Ive lived a long and full life. Just let me finish at rest."
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I asked him if he was hungry and he said no. I told him to let me know when he got hungry but he never did. I would fix him something and he couldn't eat more than one bite.
He was already 96-1/2 yrs old and his body was shutting down. I allowed him to pass in comfort; he was only bedridden 3 days and only needed adult briefs for the first 2 - then they had to catheterize him. He passed the next day.
I had managed to keep him ambulatory up until 3 days before he passed, and yes I had to hold him up to walk him to the bathroom, but I allowed him to keep his dignity and mobility by assisting him. I miss him terribly but when the end comes, it's kinder to let them go.
BTW, that day that he became bedridden, he was visited by his deceased first wife - I heard him talking to her. That's another telltale sign, when people that are already gone come back to talk to your LO - you know the end is near.
You have done right by him, and I know you'll still be doing so no matter what you decide. Best of everything to you both.
I must say, his schedule does sound very fun!
For the last year I have been caring for my 95 yo MIL and I take my cues from her. When she continued talking about wanting to die, I called hospice and they have guided me through how to proceed. No more doctors visits, she eats and drinks what she wants subsidized with Ensure, and medication to keep her comfortable to be used at my discression, less than 2 times per week.
Lastly, it is obvious you and your husband love each other very much, all of us caregivers and beneficiaries love each other. We must all meet a balance between our needs and their needs. Our loved ones would be devastated if their needs consumed and damaged us.
It’s been 14 years and counting of caring for mom at home. She has Parkinson’s disease. It never gets any easier. I am preaching to the choir with you. You certainly have your hands full.
It’s hard to know how to handle all of this. Certainly hard for the Parkinson’s patient and just as hard for the caregiver, just in a different way. I’m trying to figure it all out too. I hope we both find what is best for everyone involved. I don’t have answers for you but please accept my caring and support for you and your husband. Keep me in your prayers and I will say a prayer for you and hubby. Hugs!