Need I say more? I joined the monthly Davis Phinney Care Partner Support Group this month and the topic was guilt. They started the discussion with the guilt CarePartners feel about being the healthy one in the relationship and the guilt that our partners feel about being the one with the illness. Then, we talked about the guilt we deal with when we want to take time off to escape. We talked about the guilt we feel when we do things just for ourselves. We talked about the guilt we feel when we grieve the things we have lost thanks to Parkinson’s Disease. We talked about the guilt we feel when we can’t make this reality go away and have our normal lives back.

There were suggestions to alleviate the guilty feelings but no total solution. Ideas included sharing our feelings with others, either in a support group setting or one-on-one with a friend. We were encouraged to accept that the feelings are real and know that we are not alone in feeling this way. The importance of discussing my feelings and needs with my loved one was key. We also talked some about how difficult that can be for a CarePartner when their loved one is suffering cognitive challenges. One point that the presenters really drove home was that neither of us asked for this disease and we both have our own grief and guilt over lost opportunities.

There will be a level of guilt whenever I try to do things on my own but I must keep on trying. If I remember that when I care for me, I am better able to care for him, it helps. Also, I can use technology, my cell phone and smart watch allow me to be in constant contact with my husband no matter where I am or what I am doing. When things progress and we need higher levels of support, I will try to remember to let go of any guilt I feel because I am making the right decisions on care. My goal is to always do what is best for both of us so we can live full and happy lives.

Visit the Davis Phinney Foundation website to learn more about the support group and other resources they share for CarePartners.