One advantage to having been a nurse is that you know a lot about what is available to you in the world of medicine at times like this. Because of my other medical issues I have been under the care of a home health nurse for some time. I specifically chose an agency that had the broadest range of services that would not only help me, but my family should my illnesses become terminal. The availability of Hospice by this agency was paramount. The agency I am using is filled with caring, loving nurses, social workers, health aides, occupational therapy and a great office staff. I chose Ross Health Care here in Oklahoma. I highly recommend them.
At the beginning of this journey, while I am still cognizant and able to make decisions, I began to set up (with my most competent niece and sister, Denise) all the legal falderol. Advance directives, Power of Attorneys, bank account access, and other things that would be needed by my family once I fell silent, and unable to be my own advocate.
I included my loved ones, my care givers in as much of any and all information given to me by Doctors, nurses and others as I could possibly manage. I involved them immediately in my care. I wanted them to know each person in the health field who would be caring for me, so they would have resources and support they needed. This was a lot of what the last couple weeks was like at my home. People coming in and out doing various things and my family, most specifically my sister, getting to know the routine.
Also because I am a nurse and I am just a zippity doo dah kind of gal, I set up my own system of chart keeping and communication by paper stuff. Stress is a mind killer, and keeping track of things in a terminal illness is hard, but can be done. Jotting things down so you know what happened when, helps ease that stress some, and knowledge is power. The greatest boon to doing this is the family does not feel helpless. They are doing something. Helplessness in an illness like this is debilitating to them. Cancer is also especially sneaky and the changes in the patients condition can be subtle. Making little notes of changes you see can identify a big change soon, and also allows you to be more knowledgeable care giver to the health care team. Catching those creeping secondary illnesses and nipping them in the bud before they get out of control increases the quality of life for the ill person.
So, all our ducks are in a row, we have a good system, we have good communication and all the legal mumbo jumbo is on board.
I could go on and on about how important it is to make your wishes known to people before you begin to die, but it certainly has been harped on by better minds than mine. I have always made it known I want no heroics, I do not wish to be on machines, I do not wish to die in a hospital where frequently despite everyone’s best efforts you die alone or with a crowd of strangers chaotically trying to extend your life in vain while your family is in the hall. No. I want to die in my sweet little home holding my sister’s hand, with people I love milling about drinking coffee, and hearing their sweet voices in the background in quiet conversation.
So Hospice is for me.
I have not started Hospice yet, but it is waiting in the wings when the time comes, They will be there to give me care, and more importantly to me at least, much needed emotional and spiritual support to my family.
I am not trying to eliminate sadness, sadness and death go hand in hand. But being prepared allows you to give in to the sadness and heal it with tears and laughter without much of the “trappings and suits” of it all.
I aim for a good death. There is an excellent article here should you want to read further.