A butterfly on the door

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I learned about a hospice tradition with my aunt. They put a dragonfly or butterfly on the door of a patient who is actively dying. It signifies the fleetingness of life.

Grama has a butterfly on the door.

Barb was with me to sign Grama into hospice this summer. It was strange, of course. Who was gonna go first – mother or daughter? My aunt half joked about how it would be nice to have a “cute little double funeral.” Yeah. Real cute.

Well as we know now, that didn’t happen. And now it’s Grama’s turn.

I have so many emotions I don’t know where to start. Grief on top of compounded grief, anger, confusion, panic, anxiety. Grama has been falling into dementia more significantly over the past year and as of a few weeks ago, she didn’t know me. She was pleasant and adorable as ever, but I could be anybody. That stings.

Last week they gave her a prognosis of 1-2 days and we’re past that now. She’s quiet now, relaxed, not responding much, but still hanging around.  These strong, stubborn women in my family hang on, no matter how adamantly they will death to come.

Initially I intended to sit vigil. I’m glad for the time I did, it resulted in me advocating for better med management for her, merciful rest through her pain and anxiety. Conversations with hospice staff helped me to realize I didn’t have to be so militant, so compulsive with my care for her. Guilt was running me. Guilt for my absence over the past year as I finished school. Guilt for putting her in the nursing home in the first place.

Hospice staff pointed out something wonderful and true: today I can be a loving presence in the room even if she doesn’t necessarily know who I am. But as for who we have been to each other all our lives, I’ve already done everything I can do for her.

After they said that, I went home for a nap. I was woken by a call from the hospice chaplain. I spilled my guts about all the conflicting feelings and my spiritual doubts, my quintessential question about who I’m doing this for. She said a lot of comforting things but what stuck was her saying to me, “you’re her person, it’s natural that you feel all these things.” She encouraged me to say everything I’ve wanted to say because it might just be good for me. So I have. I didn’t realize how many feelings I have tucked away about how I’ve been losing her over the past months. Losing communication with this smart, funny, loving woman has been such a terrible, progressive blow.  I’ve packed that away and it’s slipping out now.

So having said it all, I wait. Again. And even though I know I don’t have to be there, even though I don’t know whether “spiritual ears” can hear through deafness and dementia… I compulsively go over there a couple times a day. To sit. To keep watch. To tell her how much I have, do, and always will love her.

I’m her person. I can’t stay away.

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a month or so

yesterday was 4 weeks and tomorrow will be one calendar month since my aunt passed away.  still when i really allow it in, it seems completely unreal.  i have a stack of her funeral programs laying in a pile on shelf, somewhat out of site.  i don’t pick them up.  then once in a while i do and i see her picture and i read her name and i don’t know what the hell it’s talking about.

about a month ago i had debated on a friday night about whether i could handle going out there.  my cousin sent me a text saying that the doctor told her to keep things quiet but that we should visit if we wanted to.  i didn’t really know what that meant, i was confused.  and i was so tired – physically and emotionally.  i decided that going to the gym saturday morning and then heading over to hospice would be fine.  she’d been not dying for so long, i thought she might be immortal.  i mean for real, she hadn’t eaten in like 7 weeks.  except that this week, to guage whether the “dry up” meds were working on her rotting stomach, she was on a steady diet of blue freezie pops and juice.  she was living it up.  i had time.

saturday morning i woke up at 6:45am.  without an alarm.  i just can’t sleep in.  i laid in bed, waking up, thinking about which class i might take at the gym, dazing out.  my phone rang.  i didn’t know the number but i kind of knew it was hospice.

hello?

hi, this is the nurse at hospice. 

hi…

andi asked me to call you.  barb just died. 

uhh… ummm! … ok.  ok.  ok i’m on the way. 

ok. 

quick urgent breaths.  bolting upright.  i called my mom.  she answered the phone and i couldn’t speak.  she understood.  my heart was pounding.  i threw the clothes back on that i discarded the night before and ran down to my car.  the breathing and the crying and the panic and the peace and thankfulness and the highway.  that’s what i remember.

barb just died.  she was so matter of fact, i’ll never forget how that sounded.  i read a lot of grief blogs these days.  some people say that we should take the prettier, lighter sounding phrases out to make it more real.  she didn’t pass away, she died.  i still don’t know how i feel about that.

last monday i started grief counseling and i will go weekly for a while and then probably space it out further.  the two most important pieces i’ll take away from the first session are that

1. compartmentalizing is a coping strategy not to be looked down upon, i need to use it to get through my day, but i do need to look at the grief intentionally when it’s appropriate, and

2. taking care of my aunt while she was at home before inpatient hospice was deeply emotional, traumatizing, scary.  but like many things, i shifted my mind to the reality of it, normalized it, and kept it moving.

3 of us were taking care of her at that time, but it was more of a tag team than joint effort, and that was stressful.  i really need a place to process the fact the people who could truly understand what i went through in that situation were not emotionally available to me;  we didn’t talk about it.  we shared care plans and went on our way, out the door into a world that wasn’t so heartbreaking.

this all happened so fast.  and i adjusted to each change so that i could survive through it.  time to go back and process through the disaster that hit my life this summer.  it’s so strange to move forward and look back.

i really miss you, barb – where did you go? 

my graduation present

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I’ve been planning to get this since the beginning of the year. This is a much different year than I anticipated.

My graduation present to myself (funded in part by grad money, thank you Ralee, Erik, Barb, Andi, Jim, and Jesse) was a tattoo that acknowledged what my time at Adler meant to me. Grad school changed my life in many ways, and studying Alfred Adler was an extra blessing.

As a recovering perfectionist, this concept was especially meaningful to me.  I don’t have to be perfect, I just need to do my best. It relates to every part of my life.

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Jewelry Inheritance

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Some she chose for me, some I chose from what was left, some were leftovers in the jewelry box I brought home.

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Some items required a “gross or awesome” debate between my cousin and I. We decided awesome on this flashy necklace!

disassembling a life

i’ve spent some time over the past week helping my cousins to go through some of my aunt’s things.  my cousin is taking over the house so we have to clear some things out.  it’s a very strange thing to go through your loved one’s things and make value judgments on what you want, what can be donated, and what goes in the garbage.  it sometimes feels real gross.

i went through this experience when we moved my grama into a nursing home 2 years ago.  with that experience everything happened very fast and when we found a decent facility we had to hurry up and convince her to go and then move her in the same day.  she was living independently until 92 years old.  she had been in her apt for 16 years.  and packratism runs in the family.

i am militantly anti-packrat to a fault.  i couldn’t wait to throw all her crazy shit in the garbage.  for a while i was on a high.  but you always eventually come to a point where the decisions get harder and even though certain things have no value to anyone else, you know that your grama loved those missionaries she supported for 20 years, always intended to read that magazine article from 12 years ago, cherished that plastic placemat made by a grandchild in the 80s.

so i’ve been through this before.  still.  there’s something terribly disturbing about disassembling your loved one’s life down to a few bags of paperwork and a pile of clothes that you tote out to your car.

does not compute

today it’s been about keeping it in a nice little box tucked away in the recesses of my mind while i go about the other things i need to do.  yes.  this is me having a normal life.  the problem with that is that at any time if i’ve neglected my guard, this ridiculous chain of thoughts can pop up…  where the fuck is barb?  where did she go?  she was right here.  she was sick and thin and weak but she was right over there.  did she really just lay down a couple weeks ago and die?  and what in the world does that even mean?  is this ever going to make sense?  will there be a day when it sounds normal that all of this really just happened over the course of 4 months?  earlier this year there was nothing wrong.  what the hell just happened? 

strangers

i’m trying to keep this a gratitude blog as much as i can.  shit happens.

today i’m thankful for blogging to strangers.  strangers who talk back and bless me.  strangers who say exactly what i need to hear.  strangers who don’t know a damn thing about me but provide huge comfort anyway.  i’m not publicizing regularly to the real people in my life and i’m not sure why.  but i’m being honest here, getting it out, and feeling the kindness of strangers.  sometimes technology is lovely.  thank you.