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.

what you can do for me.

good friends recently made me aware that i haven’t really articulated what i need during this f’d up time in my life.  with two of my most important people (my aunt and grama) in hospice with short prognoses, there’s not much you can do to fix my situation.  but there are a few things i can brainstorm about what you can do to support me, based on who i am and what i need:

  • touch me.  hugs, hand holding, an arm around my shoulder, a hand on my back.  a big giant tight hug, prolonged and firm, so i can feel held and protected and like i have ground underneath me.
  • ask me how i’m holding up.  when i spew off details about caregiving and conditions and routines, ask me again how i’m holding up.
  • encourage me to take care of myself.  the best thing for me right now is to get enough sleep, eat right, exercise, and connect.  ask me to a healthy dinner.  offer to walk around the lake or around the block or to coffee.
  • i know you don’t know what to say.  i understand.  i don’t expect you to fix anything.  just let me know you are thinking about me and supporting me.
  • i need to talk and write through these feelings.  i don’t generally like to talk on the phone, you probably already know that.  a text message or an email is great and allows me to get back to you when i’m able.  i love to use my friends as sounding boards to try and get things out and process my thoughts and feelings.
  • invite me but don’t expect much.  right now i’m living with my aunt fri-mon and i’m still working my regular schedule.  so i don’t have a lot of time for socializing.  but being remembered means a lot.  i may or may not be able to accept your offers, but if you feel like doing something for an hour during the week, it may just be a nice distraction.  if i can’t do it, don’t give up.  ask again next week.
  • i don’t know what i’m doing.  if you have been there through the deterioration or death of a person close to you through cancer or dementia, share your story with me.  this is a terrible club but it’s good to know i’m not the only member.
  • i am a spiritual person but have religious baggage.  please don’t try to smooth over the situation with religious slogans, my baggage makes it hard for me to be comforted by your good intentions about how i need to put my faith in God or Jesus.  please offer me words of personal support and general optimism.   thank you.

that’s all i’ve got for now.  i’m doing my best to walk through this, this is a starting point on the best ways to walk with me.

take care

in the past couple of weeks i’ve hosted my dad, given my grama another manicure and hand massage, and this weekend i will move in with my aunt part-time.  i don’t think i’ve ever been anti-caretaking, but it’s a stretch for me.  i’ve realized this itchy little piece of me that feels very uncomfortable having people in my space or being forced to spend too much time together.  when triggered, i get really defensive, passive-aggressive, and weird.  but as i give it time, it passess.  what i’m learning about myself is that i need to learn to self-soothe, calm myself down, and feel at peace when i’m with other people.  i enjoy my time alone, to be sure.  but the best gift i can give myself is to calm down and find that peace.  and then carve little pockets of time out for myself.

staying with my aunt won’t be physically challenging or hard.  but i’m nervous about moving into this next stage toward death.  before, i could spend a chunk of time and go home.  the chunk is growing to 3 days stretches.  how will it feel?  i’ve seen her get sick, i’ve seen her in pain, i’ve now seen her sleep with her eyes wide open.  but what will it be like all day and all night?  she’s getting closer.  i’ve asked the hospice people the questions, i have an idea about where we go from here.  this may be slow and gradual, or there may be a drastic downturn when she suddenly can’t get out of bed anymore.  what’s that gonna be like?

i’m trying to prepare, mentally.  i’ve notified my supervisors, i keep people posted.  i just can’t help but think that even with all that preparation, this is going to be so shocking, so much different than i imagine.  i will start to imagine different scenarios of death, of the last minutes, but the truth is i have no idea.  mostly i stop and run from the visiualization when i feel that feeling of shock and horror that i’ve felt before as i hear someone has died or see their body.  that, i know, will come.  no sense in pre-thinking it.

so, i’m getting ready to move into my last opportunity to take care of my aunt and i’m scared shitless, i’m wrecked.  but i’m gonna put my body in motion and do it.