I walk a tightrope everyday trying to figure out whether I am my husband’s wife and partner or his caregiver and housekeeper. The answer is that I have to find a way to be both. Somedays it will be more of one than the other, especially as his symptoms progress and his needs increase. Since we are alone in our house 95% of the time it is essential that I be able to handle both roles, so I work to find a balance that keeps everything going.

It works best when I can combine the two roles. There are certain things I do with him that fall fully into the caregiver role. However, if I stop in the middle of those tasks and drop a quick kiss on his forehead, it reminds both of us of who I am and why I’m here. Helping him out of a chair leads to an opportunity for a quick hug before moving on. Even something as simple as squeezing his hand takes me out of the caregiver role even if just for a moment. 

I don’t want to say that there is anything wrong with being his caregiver because, as things advance, I see more of my days headed there. My fear is that I could easily become just that and lose sight of the loving component of our relationship. When we have tough days it’s difficult to think about hugs and kisses, I am simply focused on getting through. I’m pretty sure that’s how my husband feels too. If I practice doing more of those extra things now, perhaps I’ll remember them on days when life is more challenging and our PD experience will be more bearable for both of us.