I have learned over the years that saying “no” to my husband is hard but necessary if I am going to be able to get anything done or have any time for myself. That also applies to saying “no” to myself regarding his care. We have caregivers who come to our home twice a week and yet, when they were here, I caught myself stepping in to help him with tasks that were too personal or too delicate. I had to take a breath and remind both of us that these people come here expecting to be caring for him and to give me a break. It doesn’t work unless we are all on board and let them do their jobs.

This concept also applies when it is just the two of us at home. My husband has a pretty good idea of when to leave me alone but there are times, such as this morning while writing this blog, that he decides he needs something done. It may be something that can’t wait, often it is not. Whatever I am doing gets interrupted and seldom gets finished. I know his care has to be a priority so I always respond. Once I know what he wants, I can decide whether to put him off until later.

Saying “no” can be harsh so I try to find alternative ways of putting it that soften the blow. I may ask my husband to let me finish what I am doing so I can focus on what he needs to have done. Sometimes it’s simply saying “I’ll be with you in a minute” or “let’s talk about this later, okay?”. When saying no to myself, I remember the importance of leaving my husband alone to complete certain tasks and to respect the abilities of our helpers before stepping in and doing their jobs. We all have a role to play in this journey with Parkinson’s, mine needs to be less rather than more as I figure out how to say “no” graciously and make it stick.