Feeling Stressed: Father with Parkinson's refuses help

Posted by snowwhitebelle @snowwhitebelle, Jan 8, 2019

I have been the caregiver for my father who has Parkinson’s for more than 10 years. My father refuses to have any help, even from family. He depends on me to do everything. I feel that since my father feels trapped in the house, that I should be as well. The only break I somewhat get is when I go to work, but that is not much of a break. When I try to make plans to get out of the house for a few hours, my father always makes me feel bad or guilty about it, to the point that I end up canceling my plans & stay with him. Just recently, I was trying to make arrangements to fulfill my life long dream of going to Walt Disney World, but it was starting to can more problems then I intended or wanted, so once again, I canceled my plans. I have been feeling so stress out that I have been experiencing chest pains for a couple of weeks now. I feel that something has to give soon, before I loss my mind.

Interested in more discussions like this? Go to the Caregivers Support Group.

Hello @snowwhitebelle I see you are new to Connect so first I'd like to welcome you and say I am happy to see you found Connect and the Caregivers discussion group. I am Scott and I was the sole caregiver for my wife during her 14+ year war with brain cancer.

I certainly understand how caregiving can make anyone, even the strongest, overwhelmed! I am sure there are many members here who can attest to feeling the same! The role of caregiver is grueling, oftentimes nonstop, and exhausting. Caregivers need to remember that Superman and Wonder Woman only exist in the comics! We can only do so much as humans, no matter how much we love our patient.

My wife depened on me for her care, as does your father with you. She, too, wanted no one other than me to attend to her needs. No one can do the caregiving role 100% of the time all alone no matter who much guilt our patient might heap on us. Guilt in caregiving is very difficult to manage and builds and builds within us. I used as my mantra 'no regrets' while caregiving to combat the feelings of guilt from within me and those directed at me by others.

Once our caregiving role has been established, I believe it is hard to adjust it, but adjust it we must. If for no other reason than as a patient's condition worsens things change all around. When change happened with my wife she often displayed anger at me, the situation, her condition, etc. It didn't make the change any easier, but it was a way for me to explain that I had to do things differently.

I am no pro here, but when I needed to do things different I always began them in very small ways and then built from there. I extended a trip to the grocery store by a few minutes to allow me to sit alone in the car, have a cup of coffee, or perhaps read a page from a book.

Can you get some respite care for your father? Either in the home or at a center?

Strength, courage, and peace!


@snowwhitebelle like Scott mentioned respite care would do wonders for you. You can't care for your father if you aren't healthy. I realize how hard it will be, but it is in both of your best interests.


To: @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy

To all of you fathers in our group, I wanted to take a moment to wish you a happy Father’s Day! Here is a posting from the National Parkinson’s Foundation honoring fathers who have Parkinson’s Disease. I hope you enjoy these true stories: http://www3.parkinson.org/site/MessageViewer?em_id=37244.0&dlv_id=47932


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