My weekend was bitter-sweet. The husband of a very dear friend passed away Saturday morning. My heart aches for her and the grief she is and will be dealing with a long time.
I had a house guest this weekend who is also a dear friend of mine. Her name is Ellen and she is a private person so I will not give her full name. We met when I heard her speak the same year I was diagnosed with diabetes. That was 2003.
I helped her with a Diabetes support group she organized here and then wrote articles from interviews of local people who had diabetes. I heard their stories which opened my eyes and I hope the eyes of those who read about them. At that time Ellen said we had a large number of people in this county who had the disease, but had not been diagnosed. She went on to get the hospital and the health department involved with getting people diagnosed and classes set up to teach them what they need to know to take care of themselves as well as how to talk to their doctors.
I admired her work and it was not that easy. It is always hard to create change, especially here in the mountains.
She now works as a Hospice Doctor and I can tell she takes great comfort in being able to keep patients out of pain and letting them die peacefully. Hospice care can be the only place a sick person gets the pain relief they need. Hospitals will not usually give that kind of care. I write from experience. My husband suffered horribly while at Emory Hospital, but once he was in Hospice Care, I insisted he have whatever was needed to relieve his pain.
Ellen tells me the families are the biggest challenge she faces with each patient.
"My son, Mark is coming in from California tomorrow. We want my husband awake so he can talk to Mark."
Why would you want your husband to suffer in excruciating pain so he can speak a few words to Mark? The concern seems to be more for the son who is coming than for the patient who is dying.
I remember the nice young doctor at the Hospice Center where Barry had been admitted and was finally free of pain saying, "We'll cut back on the morphine today."
"Why on earth would you do that?" I asked.
"So you and he can talk to each other."
I told him we had talked to each other for 45 years and we had nothing left to say that was worth making him suffer any more pain.
I hope if I am ever in such a state that no one will cut back on the medicine just so I can mumble a few words or they hope I will recognize someone. The patient, at this point, has no interest in others. He is dealing with pain, his own body and mind failing, and has to force himself to meet others' expectations.
Families that make a loved one suffer in such a way are selfish and have no idea what it is to suffer immense pain.
Ellen, who was a doctor when I met her, said she chose to become a hospice doctor after seeing and hearing about the horror and pain Barry went through when we could find no help for his suffering with cancer. I admire her so much. She told me her major concern for the hospice patient is that he have no pain. She tells her nurses that first they make sure the patient is pain free.
I hope all hospice doctors and nurses today make that their first priority. If we have to die, at least let us go peacefully.
A wish I share (emphatically) from here.
ReplyDeleteMy father's last month was awful. Something which haunts me to this day.
I totally agree. When I filled out my Advance Directive, I said I needed whatever was necessary for me to be pain free, even if it makes me drowsy. I help others write their ADs, and we always talk about this very subject. It's a personal decision for each of us.
ReplyDeleteGlenda, this is why I signed end of life care forms for my husband when it was clear he wasn't going to make it. Inf act, I wished there was a way to end his life more quickly. It took three days for me to realize that I needed to give him permission to go.
ReplyDeleteI hope those who read this will be sure to complete their advance directives. It is very hard for the one who has to make the decision if the patient has not made his wishes clear.
ReplyDeleteI am a member of Compassionate Choices and I wish all states would pass a bill to let us die as and when we want if we have a terminal illness. Why should we be made to suffer when we are going to die anyway? Let us go when we want and need to go. I understand that many people in Oregon and states where right to die is legal never use the prescription even if they have it filled. But we should have the right if we want it.