The only piece of her I would get to keep

The only piece of her I would get to keep

On Nov 1, 2023, I got a missed call from Debbie but she left no message.  This happened alot and was often a misdial. I texted her back to find out if she was OK.  She said she was in the Ocala Hospital, room 428a.  I asked her what happened but she said it was hard to talk or text.  I told her to rest, feel better and that I loved her.   Unfortunately,  many many days Debbie couldn’t talk well enough to be understood, so texting was best, even though texting was hard on her and often indecipherable.  Sometimes ZOOM worked for us because I could watch her lips as she spoke and kind of figure out what she was saying.  This day texting was the best she could do.  She had good days, bad days, and many in between.

The next set of words that came across my phone represent those that stop time and alter your life forever.   <QUOTE>  “They I only have 6 months to year at the most have you Don heard that?”

I was traveling between home in Maryland and Florida on a monthly basis to support mom and Debbie, but at this time while she was in the hospital in Ocala, FL, I was at home in Maryland.  I had to reply, “What do you mean? 6 months to a year? I’ve heard nothing from Don.”

Her reply, (and I quote right from Debbie’s text) “Karen said We heard yesterday that your Parkinson’s is really advanced but we did not hear a timeline.  We do know it’s not good.  Your Mom knows you are back in the hospital but she doesn’t know how bad it is.  I can’t imagine what you are going through.  I’m praying so hard for you.  When you talk with mom try not and tell her about any time frames.  It will make her so upset.  She worries so much about you already.” 

I reply. “So you mean Karen is saying you have 6 months to a year to live?  Please forgive my directness, I want to not misunderstand.”

She typed, “I over doctors.  I need to rest.”

I believe she meant, she overheard doctors in her hospital room talking about her, saying she had 6 months to a year to live.  I think that’s where she got the time frame, but that is just a guess. Oh but that’s not enough, to have doctors talking to each other about you like your ears don’t work – then she gets a text from our brother’s wife telling her that her situation is bad, oh but please choke it down and don’t talk about the fact that you are dying with our Mom, cuz….you know….other people’s needs.  I’m t.r.y.i.n.g. (very poorly) to hold back all the WTF screaming going on in my head, but it hard friends.  It’s hard.  I’m so very fucking imperfect. I’m harsh sometimes, rude sometimes, impatient sometimes….but no one…no one deserves to hear that they are dying in this way.  Without the physical presence of comfort, warmth, love, without arms wrapped around them. No shared tears, no hugs so hard your soul might just explode….no kisses on her face, no words of peace, no promises that you would walk their journey with them. 

I don’t know what happened other days.  I believe Karen to be a good person, and I know she did a lot for Debbie.  I told her many times how much I appreciated her. But I know my brother too and he lives in his secrets with Karen and sees the rest of us as annoyance, burden, and perhaps even risk that life will expose him one day.  I just know it is taking me a lot of processing and healing to put THIS day into its place, so I can stop remembering it and stop being reinjured by it.

I wrote in WhatsApp to my brother Douglas (he lives in Spain)  to ask if he knew anything about this.  He didn’t, but he contacted Donald and shared what he then learned.   He said, Debbie had been overmedicating herself for a really long time, in attempts to relieve the stiffness and other ravages of Parkinson’s.  She was nearing the end of what they could do for her.  The medications were not working anymore and a dementia was settling in. 

I got to FL as fast as I could and went to see her in the hospital.  So many things happened.  The three most impactful things I remember were this.

  1. As I entered the room, she sat in a padded recliner chair facing a window.  She was just looking outside at a world that she wasn’t a part of anymore.  Sadness overcame me.  I had to use every bit of strength to push it down, for later.  I’ve had a lifetime of experience at this, but THIS?   This was more than even I could take.  She looked (and felt) like a person trapped in her body.  A body that wouldn’t respond anymore.  She told me it was awful.  She wanted more meds, different meds, anything, everything.  But of course, the hospital wouldn’t over medicate her.   That route was at its end.  And she seemed to know it.  And it was breaking her.  She looked so small and frail and scared.   I put on my smile, set down the flowers I brought and kissed her, told her I loved her and …faked control of myself.
  2. The hospital sent a Hospice coordinator to meet with Debbie.  They said hospice was her next step.  In the hours between the nurse telling me this, while Debbie slept, and until the Hospice coordinator came to our room – I was furiously googling about hospice.  Trying to learn everything I didn’t know and what the important questions to ask even were.

When she arrived, she was kind, smart, careful in how she approached us.  I asked Debbie if it was OK that I ask a lot of questions on her behalf in front of her.  She said yes.

This lovely hospice coordinator talked about preparing for hospice and determining your goals for hospice and…..I had to stop her.  Politely, I said – we’ve never done this before.  Please speak plainly to us, so we understand what kind of decisions Debbie had to make, to understand, to prepare for.  What ensued was 15-20 minutes talk about….’planning how Debbie would die’.   <shattered>.   “Hospice goals” in practical terms meant….a) are you willing to trade off time awake with your love ones for pain relief, b) did you want to prolong a lengthy death with a feeding tube once you became unable to feed yourself, c, d, e, f, g…….one worse than the next.

We understand, I told her.  I think we need to stop now and regroup.  That’s what we did,

After the hospice coordinator left, I sat next to Debbie and we cried.  She told me she was scared and I told her I was too.  But that I was going to be there with her through this, whatever happened.  And that we would spend as much time together as we could and that we’d make sure that nothing went unsaid.  And I told her, that I loved her and that I would love her until my last day on this earth, and that I would spend every day of my life missing her.

Some people told me, I should not have said such negative things.  Stop telling her she is going to die. That I should have had hope. 

Negative.  And Hope.  I need to say a few things about that here.

On negativity.  Our family never talked about death.  We never went to funerals.  People just got sick (like Daddy) went to the hospital and (sometimes) never came back.  Like Daddy.

What I did with my baby sister, from this day until the day she died…was remind her that she was loved, that I would miss her, that she was irreplaceable in my life and that she would never be forgotten.  She often said to me, that she couldn’t tell if certain others cared, because they never showed her.  Lesson 1 from the bed of a dying loved one — tell them, tell them every thing! They ache to hear your love for them as they become brave to let go of life.

On Hope.   Our family was not religious.  Some would call themselves faithful, but then show themselves to be the most judgmental and unforgiving people I know.  Every day since this day in the hospital, I would talk to Debbie about that when she died, someone would be there waiting to grab her and hold her for eternity.  Did she know who I was talking about?

And my sister, the girl who could barely talk…. summoned all her strength and said one word – Daddy.  I said yes.  And I asked her to give him a kiss for me, and I told her that I would be coming soon.  That for us, we would miss her a lifetime, but for her, it would seem but only a moment.  We were all coming to where she was going. Back to the source. Back to where we all began. She closed her eyes after that and rested.  That is hope in the only way I knew to share it at the time. It seemed right, for the two of us.

3. The last thing she asked me to do before I left was to take off her emerald necklace.  She asked me to keep it for her.  I began to cry.  I knew how attached she was to it, my Gemini sister.  I can’t remember a day she didn’t have it. I reached around her neck and took it off and held it in my fist.  I kissed her face a dozen times, I said goodbye, she fell asleep and I walked out of that room holding the only piece of my sister I would be able to keep.

I cried in my car for an hour before I could turn it on and drive.

I left to go back to Maryland, I’d be back on November 18th. On November 10th, Karen (+Don) sent a full update on Debbie’s condition, disclosing things I had never heard before. At this point, it’s is hard to know what to believe. I want to be clear, I don’t blame them for anything that happened to Debbie. I blame our entire dysfunctional family for not having the knowledge of how to come together, in love, support and cooperation, to be there for each other. How can a person give more love and forgiveness to a stranger than to their own family and think they have achieved any level of closeness with God? It will baffle me forever.

I do know this — Debbie wanted life, and she was way out over the edge of reason in what she was trying to do to keep hold of it. Maybe that is what we would all have done. I don’t know.

Her move to hospice is coming next.

Ciao for now…Diane

2 Responses »

  1. Diane,
    You are so very caring and brave, and I know that your time with Debbie in the hospital meant a lot to her at a time when she needed love.
    It is my experience that people can be very strange in how they deal with adversity, illness, and especially death and dying.
    Sending hugs and love to you,
    Dana Miceli

    • Dana, I’m learning through a grief counselor that I am seeing that grief is so individualized. I shouldn’t have tried to control how others were responding just as they should not have tried to control me. I lost my father at 13 overnight in a hospital while I slept. Then he was gone. It was so dysfunctional on so many levels. Then I had to watch my younger sister die a little every day for 3 years, and I was so ill equipped to handle myself let alone support her. My goal is to be better. To unburden my heart. My daughter told me yesterday…mom you seem more mellow. LOL. I asked her, in a good way? She said, uh – sure. But I was just wondering what is going on in there. So we talked about it. It felt good.

      Sending hugs and love back to you, Diane

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