This is not something I like to think about let alone write about. My husband is older than I am and has a progressive illness so I will probably outlive him. In the time since my husband was diagnosed we have watched so many of our friends pass away leaving their CarePartners to figure out life after PD. I find it difficult to even imagine what that will look like.

I had coffee yesterday with a friend who recently lost his wife. He was her primary caregiver until briefly before she passed. He felt that he owed it to her and would not listen when even she told him it was time to ask for outside help. His life was 24-7 caregiving for her with no time for self-care. I compare that to a couple of other friends who lost their husbands. They were also primary carers but did accept in-home help. They recognized the importance of self-care and had outside interests. My male friend is six months into his bereavement and still struggling with how to rebuild his life. My female friends are grieving too, but they are also travelling and reconnecting with family and friends.

I don’t want to be lost myself when my husband passes. I want to have room for grief and also room to move forward in life. To that end, I have in-home care and a regime of self-care that includes gardening, exercise, socializing with friends, and simply escaping the confines of our PD lifestyle on occasion. I am able to do this without taking away from providing for my husband’s needs. In fact, I think I am better able to care for him because I am taking care of myself. I believe that having a life beyond my role of CarePartner now should serve to help me transition when he does pass. Hopefully I won’t be facing life post Parkinson’s for quite a while yet, I’m not ready yet to say that final goodbye.