There is liminal space to hospice, otherworldly. There is a Sisyphean quality to hospice, too, and you know it the whole time you're in it. I've lost, my boulder has completed its journey down the hill, and that was the only thing that was ever gonna happen. I'm glad i pushed anyway #sandwichyears
Mom is gone. I have the sensation of my grandmother having sent her across time to me now, and now I have just sent her back. #sandwichyears
I awake this morning to the reality that has come or will come to almost all of us in time: mom is gone. I have no parents left. In truth, I have long since become The Parents, but still. Today i clean, slowly, make calls, slowly. I need my dining room to be somethng else for a while. #sandwichyears
By the time people say "enjoy the time you have left" there isn't really time left, only quiet breathing and me remembering earlier times that I hope I enjoyed enough. #sandwichyears
Did I tell y'all I figured out how to use my mom's phone as a nanny not-cam? I basically call her phone, put it on speaker, put mine on speaker but mute mine, and then if I'm downstairs folding laundry or upstairs working on the computer, I can still hear what's happening in her room #sandwichyears
This summer we had "months." Now it's "weeks or months." My 10 yo is intellectually aware of what's happening with grandma but also still jealous of the time I spend with her. I love them both so much #sandwichyears
Aaaannnnd she just spilled her water jug (with lid and straw but she removes the straw) onto herself for the 3rd time today. 🙄 who is the laundry god? Who do I pray to for this? #sandwichyears #eldercare
Whew! Those hospice nurses are something else! It doesn't seem to matter what time I call, they are patient and upbeat about every kind of whatever that has come up for me. Help helps. I'm grateful. #sandwichyears #hospice
That fucking hernia. I'm starting to understand that osteoporosis is like diabetes, complicates everything else. If you've got either of those, you have to take serious care of anything else that crops up. The combinations can be deadly. #sandwichyears
When my child was an infant, I was up in the middle of the night, changing nappies and feeding.... but it was joyful. With mom, I'm up at night, feeding, attending to catheter bags, and it's not joyful. She's not going to get better. Sometimes I lose my breath. #sandwichyears #hospice
If I give mom two different choices, and do a unique hand gesture related to the thing I have said, I get the corresponding hand gesture back more often than I get the words back. #expressivedysphasia #sandwichyears
Things are getting a little easier with hospice. I know more about what to do (slip the new chux pad under the old one and then remove the old one, etc) but still... it's overwhelming. There's so many meds. And so many meals! I let myself cry for a minute or two as it comes up. #sandwichyears
Hospice team has not At All prepared me for the things I'm needing to do. Were it not for my trauma nurse buddy, mom would be back in the hospital with sepsis already. Like, wtf. How could they be this unprepared? How could they leave me alone for this? I need peeps to level TF up. #sandwichyears
Hospice is a mess. I have been very clear from day one that I cannot move my mom by myself, I would need tech to help me. They have a mattress that helps prevent bedsores by readjusting itself regularly. Somehow they're only AFTER mom is home ordering that mattress. Fkn hell. #sandwichyears
Mom is home, hospice is wild. I'm definitely on a learning curve: I gave pain meds before breakfast this morning, now she's asleep instead of eating. Oops. #sandwichyears
Thanks Hal. I'm scared, but this is what needs to be done. I'm setting up bird feeders outside the windows of the ex-dining/ new-mom's-room. She said "nice. And squirrels?" And I said yes, we can feed squirrels too, and she was very pleased.
#sandwichyears
She just keeps getting smaller. It's aghasting to watch. We did, however, just have two good days. Today I'm going on an outing with my kid because once mom comes home, I'll be limited to brief excursions for ... however many months this transition takes. #sandwichyears
Sitting in the ER waiting room, mom is en route from the rehab. Other parents are picking up my kid to head to the pool together. The Kid's Friend's Parents genre of guardian angel is highly undersung. #sandwichyears
She was so quiet tonight. Did not want to interact, didnt want to eat. She used to be able to chat up a fence post. This new mom is .... new. Fragile. Heartbreaking. #sandwichyears
Sometimes when I sit with mom, lean over the edge of the hospital bed and hold her hand, I can feel ghosts in the room. My grandpa, her sister. She's not ready to go, but I find myself bracing. The crossover is near unless she walks back from it soon. It's up to her at this point. #sandwichyears
Sometimes I leave the rehab and just sit in the car until I can cry. It takes a minute. Mom's doing the long sunset version of goodbye. She's running out of words. There's still so much more to say. #sandwichyears
When she'd arrived here, she'd refused a DNR. My sister and I talked the other day and agreed to over ride her, put a DNR in place. It's surreal to be in a place to make that call. It hasn't been that long since we climbed mountains together, has it? And yet it has. #sandwichyears
Mom's had another sleepy day. I'm trying out working some from her room at the rehab. She's been a little ... lost lately. She says I ask too many questions, ask for too many decisions from her. #sandwichyears
I'm so sad about this situation with mom! She's so sad lately- she wipes away tears when I come. Maybe she's losing track of time and is afraid I'll abandon her? I think she thinks she's dying soon. I mean, yeah, comparatively, but I'm not putting any money on next week, Mom. #sandwichyears
...and she takes the rod and pushes it up and says three, does it again and says four... we both laughed pretty hard. #sandwichyears
... but geez o pete I should not be having to stay on top of them this hard to get Basics accomplished. She's now clean, in bed, hearing aids charging, lights out (small nightlight on)... I forgot to check her phone battery. Sigh. Mañana. #sandwichyears
