I was in the trenches of healthcare for 41 years. About 25 years ago, I began to understand that people die all the time, some more slowly than others. Many of them are kept alive artificially by procedures like dialysis and ventilation. Often, it is against what the patient's wishes are because next of kin makes the decision if the patient is not able to make his or her own wishes known. People don't want to let go of their friends and family. I get that. That is when my focus turned toward palliative care. I studied relentlessly about projects that embrace the "dying well" philosophy of Ira Byock. Kathy George and I did a whole lot of leg work to try to put together a top ten list of diagnoses and codes for a study on end stage diseases.
Mama gave me a book one year by a doctor which was a clear, clinical practical guide to helping patients die peacefully. If I had a nickel for every frantic end of life scene I've witnessed where nobody was getting along and many were in denial, I'd be rich. The whole hospice movement focuses on giving aid to those who know they have a terminal illness, That gives a family six months to make peace with each other and the past. No guilt. It always helps to have your plans made and shared with a select few that you trust.
My friend Gigi almost died last year from meningitis. It was sudden and critical. She got hit with every med in the world over the next months and survived, thank the lort. That is totally different from chronic disease wearing away at your body. Chemotherapy is a booming business as is radiation therapy. The treatments are strong and harsh on your body. If there was a recent surgery or another existing condition like heart disease or diabetes....well, you get the picture. It's a hot mess. I have worked in that setting and loved the patients to pieces, all the while hating the job.
Some of my friends are freaking out because I have reached out to ask for their participation in my funeral, whatever it shall be. My motivation for this is to keep my family from having to make decisions. I've already made them. If any of them are dead before me, Kay's got it. Not to worry, I'm fine except for arthritis.
Which brings me back to hospice and home health. The down side of home hospice is that there must be somebody there with the client 24/7. Nurses come and go and the trusted ones are instructed how to medicate and treat. We did that with my aunt Helen. The one shift I took with her was the last time I saw her alive. A DNR must be signed and visible in case somebody flips out and calls an ambulance. Hospice care can be delivered in the hospital setting as well which is what we did with both of my parents. Their multiple health problems and age just mounted. I was still working there and was healthcare DPA so I had a lot of advantages, namely wise advice from a staff of healthcare professionals who loved both me and my parents. Dr. Ategbole, bless his heart, is the one who told me point blank "Let your daddy go." And we did. He was at peace at the end. In fact he told me two days before "i want to die." His was an acute event that lasted about two months.
Mama, on the other hand, was long and drawn out involving many falls and CHF. Many falls equals many surgeries on broken bones. One of my main chores was taking them to the doctor as their advocate. I wouldn't trade it for the world in gold but it was like five years of being on call. I distinctly remember picking my mother up from rehab to see the orthopedic doc. The pinning had failed and she was in terrific pain. Osteoporosis is a bitch. It was cold as shit and I had her wrapped in a blanket in a wheelchair. When the film showed the screw hanging sideways we went to the hospital. She did well with the surgery to repair but out of the blue developed a ruptured pocket in the colon meaning sepsis was setting up. More surgery was out of the question. Once again, a dear friend and co-worker said "it's over."
Fast forward to hospice part 2. It lasted about 3 days and I was there working so I could drop in at will. She was comfortable and passed peacefully in the night with my brother Tommy at her side. The day before it snowed, and Lauren napped on the little couch thing after she got off from her job. We were all on the same page and together as a family. Millette was there always for anything we needed.
Hospice is about easing the pain and raising awareness of the patient's wishes by having family conversations, and with friends. My attorney said that is the most generous thing anyone can do. He will be speaking at mine, Lord willing.
This is probably a long ramble to keep from thinking about the past 72 hours. Hey...whatever works ^j^