We all don’t like to talk about it, but we all die. All of us. And dying healthy is stupid, dying sick with MSA is stupid. A meteorite on my head in old age (what is old age?) would be great…
To deal with the topic, one’s own way to death, is an unpleasant topic. Some people it triggers immediate with crying attacks, stokes the throat. “That doesn’t happen yet, it’s not a topic yet, not to me, it’s totally early to talk about it.” Like my sister, who also refuses to talk to me about (my own) death. And the death will come to us all, it only meaningful to deal with it. If you don’t want to let the state dictate, what should happen to you, after death and want to cause the relatives a lot of trouble…
But it is not easy, I understand it too, I try to be pragmatic,
Depending on whether man has spouse and children it may differ, some relatives are entitled to decide something. Someone like me, unmarried and without children, would rather write its wish down. All people should also have a will, by the way.
This whole subject has been on my back for a long time, and experience has shown that once I have done it all, the subject will be off the table.
I have been advised by my GP, he must sign the whole thing, confirm that I am in my senses, and a copy goes into my medical file. Even the whole thing can be checked and signed again every year, if I have changed my opinion in something.
He recommended that I take a copy from the “Bavarian State Ministry”, which seems to be usual here. This is a very long PDF, my family doctor recommends me to use the “Patient Decree” and the „Mandat (Authorisation)„
Of course it is shitty to deal with, who can decide what about my life, when I can’t communicate anymore. As I said, I would be very grateful about a meteorite on my head, before it comes so far.
Furthermore, should one also consider what should happen to one’s own body after death? If you want to donate your organs (does anyone want to have an MSA kidney or liver at all?), if you want to donate your brain to science for research purposes (what I recommend, future generations will be grateful, and your own karma account will be thanked – if you have something like that after death) and what should happen to the rest. Many want to be cremated, scattered in a meadow, buried at the root of a tree, or some want to be buried at sea. With guests or without, with a religious escort or without.
I also have a list of contacts with email addresses to be notified in case of need. And my accesses I still have to collect, mobile phone contract, bank access, insurances.
All in all it does not make a good mood, it often seems to me, that it is not at all about me at all. But that’s life… first we live and then we die. And I live first.
But now the rehab, I am very curious what will happen there, and to travel there will be a challenge, especially with the cold I have now. Sometimes I don’t know if it’s good or bad, that I have so much to do, there’s almost no time to think about what to expect and what a wicked disease it is. What I find terrible, is the fact, that we MSA patients no longer have a choice, some things just have to be done.