I am regularly being asked to do things that I didn’t expect to do, things to support my husband as his symptoms progress. Sometimes it is fun, taking on a new challenge, other times it is not so fun as I accept tasks that are not terribly pleasant but that must be done, nonetheless. I do them out of love for my husband but need to remember there are limits to what I should be doing and understand when it is time for me to say no, even to him.

Talking through the changing roles we play helps me express my feelings. There are things that I don’t mind doing and for which there are no reasonable alternatives. Some of the things my husband’s disease will ask of me can be done better by someone else and we are open to that when the time comes. Right now, there are tools out there that can help him maintain his independence and I need for him to be open to discuss and try those options whether it be adaptive utensils or grab bars for the bathroom.

Acknowledging that my feelings matter as much as his is key for me as I try to navigate my place in our journey. I need to be able to communicate with him about what I find challenging to alleviate misunderstandings. I have to be able to say “I need this for me” whatever it is and not feel guilty about it. We can look for better solutions together if we are willing to listen fully to each other and consider how to meet both our needs. I will still have tasks that I don’t like, but at least I will know that he understands and that I am respected for doing them anyway.