Yesterday at our gathering we had the Palliative Care/Hospice social worker come talk with us, to share her expertise on adjusting to the world of changing health and medical choice. It is a tough journey to grasp, especially so when you are emotionally and lovingly connected to your care person. During my personal journey walking beside Russ, I found that just as soon as I grasped a concept or new way of responding, it changed. I would feel 'in control' for a few weeks and then a shift would occur and I would be tossing in the storm. Even though I knew there was light on the other side, it's lonely to travel in the dark.
Miko shared some ideas with all of us to help us better navigate those storms, giving us a bit of ballast. I needed that with Russ. I needed to know there were other options. Sometimes we were holding on so tight because he was such a good man.... it was so hard for either of us to let go, it was so hard for either of us to accept transitions.
But Palliative Care and then Hospice came to walk along side of us. Miko shared with our group how the process works, how it supports the ill individual and families. Both entities were able to help us understand the toll Parkinson's was taking on our physical wellbeing, both Russ' and mine. They were able to help with both emotional and mental well-being. They helped us realize we didn't have to do it alone and that they were there to help.
Fear and love lived within each of us, the big question of every day was 'who would drive?'
Our Care Gathering is an amazing group of women. When we come together each month we encourage strength and the ability to face the immediate tasks without looking too far in the future. We encourage one another not to look for the miracle, but to be the miracle and that every day there are wonders to behold if only we'd look; to slow down, breathe, look and wonder.
I personally am on the other side of this journey. I can say "we made it"... Russ was able to live his life out at home. And I can say that we made the best 'team' possible; we were kind and did the best we could. But I can also wonder, was his last breathe in fear or in peace, did he leave this world in comfort and did I tell him enough that I loved him. I sure hope so!
Miko gave us a wonderful book, filled with wisdom from both the caregivers perspective and the patient. It's 2 sided, easy to understand, and very straight forward. Let me know if you want a copy, I just ordered a bunch.
Peace Love Hope