A lovely social worker from a local home hospice organization came to talk to my folks and I today. We have another appointment with her and a nurse on Wednesday. I'll probably talk about these things in more depth later. But for now...
One of the many things I learned today was that generally as people get closer to dying, they tend to back away from the rest of the world, turning inwards to process their... well, their process. They often do this for two or three months before their actual death. They just sort of sense that things are going to change soon, and they go into preparation mode.
I believe that people can sense death drawing near. I've experienced it. My grandmother, who had always been resistant to making plans or having discussions about her own passing, suddenly chased me down her walkway when I was leaving and dragged me back into the house, insisting that I choose the thing I wanted to inherit when she died. I protested, since I was in a hurry and wasn't prepared at that time to think about such a thing. I said that I would think about it and let her know next time I visited. She continued to insist, and finally I chose something, gave her another hug, and ran to the car. I couldn't understand why it was suddenly so urgent an issue - she was healthy for a woman her age, there was no reason to think she wouldn't survive many more years.
That conversation was the last I had with her. She died of injuries from a car accident only a few weeks later.**
I realize that for the last bit, when I'm really heavily drugged up to relieve pain (or at least my expression of pain - boy, am I paranoid about drugs, or what?) I am pretty likely to mostly sleep or withdraw. I mean, I tend to withdraw when I'm in pain, so that's not a big surprise.
But the question is this: I spent much of my childhood, and my adulthood as well, backing away from the rest of the world. In some pretty significant ways, I've been more socially connected since my diagnosis - and my journey towards death - than I've probably been in my entire life. Heck, I've probably been more ME than I've been in my entire life, in many ways.
If you had asked me five or more years ago what I'd want at the end, I probably would have said, "I want to sit quietly somewhere and just be left alone to read and think and prepare myself."
Now? As I feel now, I want to be surrounded by my family and friends. I want my cousins to visit, I want my aunts and uncles to visit, I want my sibs-in-law and their families, I want my mother-in-law to visit.
They are wonderful, and I love them. I want to feel that love around me. Even if I'm not conscious, I want people to read to me and talk to me, I want to hear music and listen to my favorite podcasts.
I remember when my father-in-law was dying, the family all gathered around him and sat vigil. It was so wonderful, being able to share stories about him, all his dear and silly and funny and inspiring and frustrating history. It brought his spirit into the room with us, even though he was not awake to participate actively in the discussion. We laughed, we cried, we laughed again. We were able to share with him our love, we were able to forgive, we were able to say goodbye; and it was good, it was healing, it helped us share and bond with each other, it helped us start down the road to healing from our grief.
I want that. I want it for me, and I want it for my family and friends. I want it to comfort and surround my parents and my husband and my son in those last difficult days.
Will I still feel that way in the coming months? Well, I can't know for sure. But it's something to discuss with my family. And to keep thinking about.
Although perhaps I feel this way because I've done so much thinking and being on my own already. Perhaps at the end we take care of the parts of our lives that we've neglected.
It will be interesting to find out where I end up.
And then the really big adventure begins...
**Please don't think me neglectful of my beloved grandma; she lived a 4-hour drive away, and I had a young infant with special needs at that time. Rather, it was a sign of my affection for her that I was willing to voluntarily trek alone with said infant in order to see her. I adored my grandmother - everyone who knew her felt similarly. She was an amazing, extremely lovable person. I still miss her. If someone waits to meet us on the other side, hers is the face I want to see, and the arms I want to feel around me.