what happens in hospice...

there was something surreal about signing on to hospice yesterday.  it was almost like a deja vous...as if in the back of my mind, i'd seen it before.  or like it was happening to me, but not really...the intake nurse was nice, but ditzy.  i get to have a chaplain on my "team" too, which i'm curious about.  i sure hope he or she is a wise one.

oxygen is on its way, and a wheelchair too.  i might want to see the ocean again.  the "comfort" drug package came last night. our appointment lasted  2 hours, but i'm pretty sure it was slower than normal because she kept losing her place, forgetting that her blue tooth was still on her ear, and asking the same questions over again. 

she checked my heart and told me that it was strong, which is kind of a mixed bag, although i'm grateful it worked so well for so long.  she also mentioned that bone marrow mets were "the worst", which was less than comforting...i tried to explain why i don't want to take a lot of drugs until i absolutely have to, and how i'd like to have my wits about me as long as possible.  she didn't seem to get that.  i asked questions that she said no one has ever asked her.  she told me that most people don't want to know.

after she left, i set up interviews with potential care givers. mitchell and i finally wrote and placed the ad on a young buddhist website. i thought they might be the best kind of helpers for this period. 

 and then my jobs were done for the day and it was on to television and more zoning out.  it didn't work though, because i started feeling really sad and tv wasn't able to overcome that.  i had been feeling a distance between mitchell and i the last few days ...i laid here alone in the dark,  feeling sorry for myself...and then i started crying.  after awhile i remembered music and how it soothes me.  i brought my computer to my lap and started youtubing songs that make me feel better. james taylor was my first pick, and that led to my other favorites, some of which made me cry again,  but that was good...  

after awhile mitchell came into the room.  at first we were both defensive and distant, just talking from our heads, not our hearts.

within a few minutes he told me that i'd been so unfair and critical of him lately, like he never does anything right. and he said i was stubborn and didn't listen to anyone. he felt defeated, like he couldn't really argue with me because i am dying, so he just pulled back.  

i told him that i felt like i was failing, because he wanted me to be more wise and strong than i am.  i said that we die as we live, so what was he expecting...how could i all of a sudden calm down, and think things through before sharing them with everyone...stuff like that...

and of course there was more, but little by little, the love came out of hiding again.  it's so much better when we talk it out.  i really do forget how difficult this is for him.  we are a team that's been together for a hundred years...and now it is all going to change... how could this not be hard...

by the time we went to sleep, all felt better, more connected, less alone...

each day people come...i'm trying to limit it to 2, because that's about all i can handle, physically and emotionally...and soon lynne will be here and then lanie. it's always been hard that two of my closest friends live so far away. i'm so glad we'll be together again.  

Comments

[nerissa]

thinking of you everyday. never give up. with love and fervent prayers.

[lynnie]

Me too.

[Pat Pendleton]

Thank you for sharing so much in this blog--your truth is an amazing gift that continues to leave me in awe.