The biggest difference for me involves the trajectory of care. When I was raising a toddler, I knew that he was maturing and would reach the point where he didn’t need my help anymore. When you are a CarePartner for someone with a chronic illness, the opposite is true. My husband will need more help as his condition progresses and we may reach the point where my help is not enough and we need to bring in additional support.

With my son, I learned to use less words, with my husband I am often using more as I try to communicate effectively. In both cases it is my job to make our environment safer, child proofing with my son and fall prevention with my husband. I live in the moment wondering where is he, what is he doing, if he is safe. When caring for a young child I worried when it got too quiet; now I worry about noises that I don’t recognize and rush to make sure all is okay.

Being a CarePartner is a challenging task that I willingly accept without really knowing where it will lead. I am learning more about this disease and the body as we move forward but even more important, I am learning about myself. I am finding my courage, my compassion and yes at times, the limits to my capabilities. Someone once said that being a parent was the most difficult task they had ever undertaken, I would say that being a CarePartner tops it. Yet, with all the difficulties I face, it is also my most rewarding role ever and I wouldn’t walk away from it for the world.