Our doctor recently contacted us to come in for an appointment. Odd... the patient usually makes the appointment. I didn't give it too much thought as he said he wanted to 'check in'. In fact, our meeting of over an hour was his response after reading the recent appointment notes of our visit with Russ' neurologist. The neurologist apparently made note that it was time to 'talk end-of-life' issues, but was not certain we were ready for that.
In response, Russ' GP called us in for the tough, but kind, honest and direct conversation about our end-of-life options. I say our appointment, our options, because the disease has given shadows to our individualism; we are meshed as one in so many parts of our lives now. I often say we are 'joined at the hip' and point to my cell phone that I have on my hip at all times when I am away from home, but truly it carries farther than that. So much of life now is communal.
Both men felt Russ' Parkinson's (MSA/PSP actually) was advancing rather quickly. For Russ this means there are no drugs that really help, both are rather fast moving and both are degenerative. That means Russ is a 'new man' about every 3 months. Both men think Russ should be 'on hospice'. As you may know when one is put on hospice, it generally means you will more than likely die in the next 6 month period. Both men are thinking more like a year, most likely not 2 years. But there is no definitive answer to timing. Russ is losing more and more ability to stand unaided and uses his arms almost exclusively to rise from a chair, the bed or the toilet. That and his issues with speech, swallowing and bladder lead them to encourage us to connect with hospice.
Frequently you hear of folks being put ON hospice and then taken OFF. I do not understand that process, why would someone go on and off? It could be because in the strictest terms ones prognosis is death within 6 months. That sounds rather unlikely in Russ' situation, but again who knows? And doctors interpretations come into play with diagnosis.
What are the emotions that come into play when someone actually verbalizes to you the concept of hospice? For me, I have known that Parkinson's was degenerative and would end in death. And of course as the doctor said "through all of history, no human has ever beat death, it comes to us all." And Pastor Jeff often reflects "I hate to tell you folks, but we will all die". Why is it then that no one wants to talk about it? Why is it so hard? Why do people stay away when life is nearing an end? Why does it affect people with such pain? There is a beginning and end to this life, why do we Americans try to pretend it isn't so?
In considering hospice, I feel that it allows us to accept death as a final stage of life here on earth, affirming life, but not postponing death. Every day we encounter overwhelming stresses in relationship to Parkinson's. When we try to go it alone, we falter. Russ and I do try to be open, but some thoughts and emotions just don't surface. That is where hospice encourages open dialog...or at least I think that's the plan.
We all grieve differently. I believe Russ and I have been through many stages of grief as we watch and feel him deteriorate from this disease. As one wife stated in my wives PD group, "the hardest thing you will ever do is mourn the person you lost while he is still alive!"
Today Nathan Harmon was a guest speaker at church (Google "Your Life Speaks). With Jeff doing a sermon series on Moses, Nathan spoke on 'Wilderness and Life Lessons'. It hit me that our wilderness, right now, is being asked to consider hospice! Our wilderness is taking the olive branch and accepting the unknown. It is about reconciling our hopes for endless life with the reality of peace. Wilderness is a part of our life experience and we must not try to outrun it or cower from it, but through the storm of adversity, to transform our hearts. It is to learn now all we can about hospice so that when the time comes we can accept it in peace and let it wash over us with its own kind of strength.
Hospice is there to hold us strong physically, emotionally and spiritually in lieu of curative treatments. We are only beginning to learn, but Russ says" I want to know the path to the end...