Wasted on the Way

I have to say this has been the saddest three weeks of my life.

I have been very lucky.  Three of my grandparents died when I was relatively young.  Young enough that I was too self involved to really pay attention.

I was lucky enough to have my wonderful grandmother for 100 years.  She died on Christmas day 2009.  We had a wonderful family celebration of her 100th birthday in August, everyone turned out for it.  It was very special, a special time for a special lady.

me and gg

Three weeks ago my mother was diagnosed with Stage III multiple myeloma.  This is a leukemia that affects the bones.  It is a disease that is diagnosed in it’s infancy.  It sits in the body and smolders for years, and nothing happens.  No drugs are needed, no treatment, just monitoring of blood levels every three to six months.

My mother was diagnosed with MM 7 years ago.  We all panicked, but quickly found out that MM can smolder for years before it becomes full blown.

It became full blown three weeks ago.  My mother was hospitalized, numerous tests were done, and the diagnosis came back, the smoldering had ended, we were in full blown disease.  The oncologist reassured us that this is highly treatable with very aggressive, very sophisticated chemotherapy drugs.

I came back to Virginia to get the cure going.  Booked planning meetings with oncology and began the first round of chemotherapy on August 13th.  As we sat in the planning meeting, my mother and I, my brother on speaker, I noticed the look on my mothers face.  She had completely shut down, she wasn’t in the room, she wasn’t listening, she wasn’t interested.  She told the nurse practitioner she wasn’t interested, she didn’t want this, she didn’t want to try, she was too tired, it was all to much.  We didn’t listen, we had our agenda.

We got out the rally bats, my brother and I.  Mom, there is remission, limited side effects, easy plan to follow!  Let’s try it, let’s commit to one cycle, see how it goes, see how you feel!

Begrudgingly, she agreed.

The first round began on August 13th.  It involved pills, injections, and blood work.  I spent my time making medication lists, chemotherapy schedules, injection times, medication times.  Document after amended document.  Trips to the pharmacy, trips to the cancer center for treatment, Google calendar links to everyone.  A lot of planning and doing.

Through out it all, my mother seemed to get smaller and smaller.  She became less than what she was, she disengaged, she didn’t read any of the literature, she payed no attention to my well thought out schedules, she was confused, started having side effects immediately, and was tired, just so, so tired.

Throughout it all, I was the upbeat cheerleader. I kept trying to get her involved. Ikept putting my lists and schedules under her nose.  Nothing, nada, no interest.

She mentioned taking her life during one treatment.  An antidepressant was immediately added to the medications list.  On we pressed, another injection, more pills, more lists, more driving.

Endless activity until last Friday night, when I finally put my agenda to the side, and took a good honest look, and finally heard what my mother had to say.  She didn’t want any of this.  She was tired.  She didn’t want the crappy quantity of life that chemotherapy was going to give her, she wanted what time was left for quality of life, her version of the quality of her life. Not what I was selling.

I listened when she told me she was done with chemotherapy.  I took a deep breath, and said the one thing that I never thought I would have to say to either of my parents, it is okay, you can let go.  You can do it your way.  No more treatment, you don’t have to.  And no, I don’t think anyone will think you are a quitter.  It is your life, do with it what you want, it is your choice.  My brothers and I will back you 100%.

In the past three days, I have written and added funeral and cremation instructions to her will, filled out advanced directive forms, and picked out her outfit for cremation.  The whole time holding on, not breaking down.

She then got out her jewelry boxes, all of which were to go to me.  One was filled with heirloom pieces given to her by her mother and aunt.  The others had a lot of costume pieces.

The soul wrenching, gut sobbing tears started when I opened the box of stick pins.  Remember stick pins?  She used to wear them all the time.  I couldn’t get a grip, I was like a little kid again, holding onto my mommy and sobbing.  Stick pins in a box, she will never wear them again.  Oh my god, my mother is preparing to die.

This was a pain like I have never felt before.  This was not the plan, the plan was for her to get better.  The plan was life was to go back to normal.  Too bad that was my plan, and I forgot to check with her, because it certainly was not her plan.

My plan involved closure, telling her how much she had hurt me, airing all my resentments, letting her know how messed up our relationship had always been.  Hugs and kisses and starting anew.

As I sat looking at that box of stick pins, I let it all go.  Life changes in the blink of an eye, what was so important to me for so long, what has festered in every encounter we had,  has no meaning now.  I can’t waste any more time.

I am making the most of these last few days we have together.

This weekend we are moving her to assisted living in St Louis to be near my brother and his family.

If we are lucky we will get a year.

No more wasted emotions on past resentments, we no longer have the time.

Look around me, I can see my life before me
Running rings around the way it used to be
I am older now I have more than what I wanted
But I wish that I had started long before I did
Crosby Stills Nash – Wasted On The Way Lyrics 

 

 

 

2010-01-14 09.33.14 2014-08-25 09.30.14

 

 

 

 

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25 thoughts on “Wasted on the Way

  1. I’m so, so sorry. I have similar issues with my mother and your story makes me so sad. Good for you for listening and supporting her. You are such a good daughter to care for her so lovingly.

  2. I can’t click like on this one 😥 I am so sorry and want to just reach through this damn computer and give you a big hug. You have been amazingly strong to realise that it is not your choice to make. The hardest thing is to let something we love (I know you have your problems but she is still your Mum) go. Enjoy every last minute you have with her and thank God you are sober so it will be even more special and not a haze. xoxoxoxo sedning you big hugs.

  3. my dear, you will never have enough time to do this. but you have THIS time. you will do this. sending you love and knowing that you will find strength you didn’t know that you have. xx

  4. oh.man….
    I am so proud of you, if that matters.
    This will be hard, HARD, but you have a sober IRL community, you have your sober blogging community, and your brothers….together you can do this.
    Yes, time to let the resentments go, to say the things you truly need to say to your mom, to heal the relationship as best you can.
    what a service you do your mom by allowing her to die with dignity, on her terms.
    I am in awe of you….
    doing all of this at 8 months sober is amazing. Staying sober will make it doable…just keep taking care of yourself too.

    hang in friend, you have a lot of support

  5. This is so hard – I feel for you and what you and your mother are going through right now, and your brothers, too. I am glad that you have found some peace and acceptance in your heart with the decisions that you and she have made, and wish you love and strength for the months ahead. xx

  6. I’m so sorry.

    It’s the hardest thing in the world for a daughter to watch her mother dying.

    You are staying 100% present and aware though and you will be grateful for that forever.

    My thoughts and prayers are with you.

  7. Thinking of you and sending love and hugs. I’m so sorry you’re going through this. For what it’s worth, you’ve made me realize it’s time to stop wasting time on resenting the past. Wish I could say something to help ease your pain. Please take care of yourself as much as you can. And please know that it sounds like you’ve done as much for your mother as is humanly possible. I wish you both peace. xoxo

  8. I’m so sorry for your pain. You are doing a wonderful job in caring for your mother and can hold your head high and be proud. I hope that your mother finds the peace she needs and that you cope with the same strength and resilience you are showing now. xx

  9. this is one of the most powerful things I have read in a long time, SL. You saw light and the direction it was shining. From Him to your mother and away from the reflections that we try to cast ourselves. Pure light…and you saw it. I wish I could see that kind of light with the clarity you saw it. Through that box. And here’s the payoff…the resentments lifting, the love building, the connection strengthening.

    Ah…I am so sorry about this, and yet, I am very happy that this is where it is going to take you. I too am proud of you, if I can be so daring to say so. You have shown me true strength today. Any stuff that I am going through pales to this.

    Hugs
    Paul

  10. Your mom is beautiful! And I admire you. For 2 years my mom just wanted to live her life her way and my sister’s and I just had to do it our way, thinking that was best. You realized what you were doing just in time and you are so lucky. Powerful stuff, soberlearning 🙂 Thank you for sharing.

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