The waiting game

Warning:  this is a bit stream of consciousness.

This is day 4.  Mom has been on Hospice Care since July 11th.  This is October 7th, but this is day 4.  Over the past couple of weeks, I have noticed a steady decline, but on Thursday, she got on the roller coaster and went over the big hill.  She came back up on Friday, but yesterday and today have been more down than up.  

It’s stressful.  She takes breaks of 40 seconds or so between breaths sometimes.  Her hands and feet will be icy cold one day and then back to nice and warm the next.  She has talked to my dad and on Thursday she wanted a cinnamon bun.  When I questioned that, her response was, “Jesus was at the head of the table and I could just smell the cinnamon.”  I didn’t have any cinnamon buns, so I made her some cinnamon toast.  She enjoyed it.  

It’s not that I want my mom to die.  But this waiting is horrible.  My daughter sucks in every emotion in a room and then feels it with intensity and spits it back at me.  We’ve decided to try and be extra nice to each other as we go through this, but it’s hard.  Standing at the door to her room and watching to see if she will take another breath is exhausting, and I’ve been doing that for weeks now.

With my dad, it was different.  Alzheimer’s took him away from us long before his body died.  I had no problem and no guilt praying for him to die.  He was no longer my dad.  He was a shell.  I didn’t want him to live like that.  

Mom is the opposite.  Her brain will not give up.  Her body is so weak, but her mind is still strong.  When she is awake, she is usually alert and able to have a conversation and joke about things.  She was doing crossword puzzles two weeks ago.  But she can’t get out of bed.  And she can’t move her legs.  Today, she couldn’t pick up her pills.  I had to put them in her mouth and then hold the straw up for her.  I know she is prepared to die.  And I thought I was prepared for her to die.  Until Thursday.  When it looked like she could actually die any time.  Things changed.  My emotions are all over the place.  I sit and watch for her next breath.  She is not in pain and I want it to stay that way.  That is the priority.  

I’ve been doing so well losing weight the past month and a half.  I’ve lost about 15 pounds and I feel great.  On Thursday, I had pizza for dinner and then ate many handfuls of Teddy Grahams.  They are a weakness.  They are calling to me right now.  On Friday I drank a Dr. Pepper.  Another weakness.  It was really good.  I haven’t had ice cream yet.  I don’t even consider it a weakness.  It is a part of life.  I have had it even while I’m trying to eat Keto. Ice cream is what makes life worth living.  Now it is calling to me too.  I don’t want to undo a month and a half of hard work with emotional eating.  But oh my goodness that is hard.  (Full disclosure:  I just had a handful of Teddy Grahams.  But that is it.). 

I have thinking about speaking at Mom’s memorial service.  I don’t know if I can do it, but I feel like I need to.  I’ve certainly cried in front of a group of people while speaking before.  It’s not something I want to do, but it won’t kill me.  I’ve also considered singing, but that I can’t do well while crying so I think I’ll skip it.

Someone said to me the other day that this slow process is helping me prepare.  If she had died suddenly it would be such a shock, but I have time to prepare.  I’m not sure if that’s true.  I probably would have agreed on Wednesday, but after Thursday, I don’t think so anymore.  She didn’t even die and it threw me for a loop.  Every time I watch for her next breath, it is with anticipation that it won’t come and dread that it won’t come.  When Dad died, I got the call at about 5:30am.  I came upstairs to tell Mom.  I remember her saying that morning that she thought she was ready for it, but she wasn’t.  (I just went into the kitchen and didn’t have any Teddy Grahams.  Yay me.  But I really wanted them.). It didn’t make sense to me because I was ready for Dad’s death.  But I had gone to see him in those last few days.  She didn’t want to.  Maybe that made a difference.  

My daughter tells me quite often, though not every day anymore, that she is worried that I am going to die.  I can remember feeling this way about Mom when I was her age.  I don’t think I ever said it out loud, but I did think about it.  It scared me so much.  And now here I am sitting beside her bed waiting for it to happen.  Wondering how long this will go on.  Feeling a bit selfish because part of me wants to move on from this.  But that is the part that isn’t ready yet.  

I’ve been trying to make myself clean the house these past few days.  People have come to see her and I know there will be people coming after she dies. I need to clean out the fridge and make room for the food that will come.  My daughter doesn’t understand this part.  She doesn’t want people to come over, but if they do, she wants them to bring cookies and ice cream (I’ve taught her well). She has also said that she doesn’t want to go to the funeral.  I don’t want to make her go, but I think she should.  I talked to her yesterday about it and what she can expect.  She doesn’t remember Dad’s service.

I think I’m going to make cinnamon buns.  Not for me.  

36 thoughts on “The waiting game”

  1. I hope you can feel some of us sitting by your side. I’d share my teddy grahams with you anytime. I’ve been there – it is hard, and no matter how much time I had to prepare, I wasn’t prepared. Every death is different. Every death hurts. I only hope that by having the strength and courage to write your feelings I can help share a teeny tiny bit of the hurt by letting you know i am by your side in a small, small way. Prayers and Love

  2. For what it’s worth, consider letting your little girl stay at home, or outside the church, with a trusted adult. My oldest brother died unexpectedly and my sister in law was a hospice nurse, and thought the boys should attend and view the open casket. She had to drag them both crying, up to the casket. I don’t think it was worth it to the young boys. Deirdre and I are not having a funeral, just cremation, nothing to do with a church, but that’s another story. We think of you often and wish you / yall the best.

    1. She’ll be cremated too, so no casket. I don’t look at them either! I was about her age when my great-grandmother died and I remember going to the funeral but we sat in a family room so we could hear everything but couldn’t see and nobody could see us. It was very strange. Our church is so open and funerals are not all sad – there is always laughter. I think she will want to go when it comes time. She will want to be with the rest of the family and we’ll all be there.
      I love seeing your updates on FB! Of course, your grandchildren look like I remember your kids! Y’all will always hold a special place in my heart!

  3. I understand about your dad my mom didn’t know us kids. She was mean to the nursing staff. Your mom was and is a wonderful easy to love person. Take Bell just she and you before the service starts. My brother had to do that at our dad’s service. It help him ask question in private. I also watch my husband to see if he is breathing. Thank you for sharing you journey. I will help you carry your feelings. Love you and Bell. I will pray for you both. If you need to cry my shoulder is always here.

  4. I am deeply sorry for you and your family. This is so hard to get through. I lost my dad when I was 14. He died suddenly of a heart attack and I had no time to say goodbye. Both situations are horrible. Hugs and prayers, Heidi

  5. My heart hurts for you. I wish there was something I could say to make it easier for you. Please know that I am thinking of you.

  6. Dear Molly, You may be finished with “waiting” by the time you read this. Two things, I am praying for you and all your family. I too kept vigil for over a week with my mom. She was under hospice care for 7 months, but the last month was a definite change. Allow those who are near by to nurture you and Bel. I’d drive up to clean your house if I lived any closer. That is a gift someone near you is wanting to give. Someone who doesn’t cook (like me) but who can come in and take that chore and give you time and rest as their offering. If hospice has not already shared this, let your mom know that you will be “ok” and she can leave you with your family and friends to look out for you and Bel. It was an important step with my dad and mom. Audio is the last sense to leave us and we graduate, so talk with her and send her home with music that she loved here. It’s been six years since I lost my mom and dad and now I talk with them and laugh when I do things that they would have laughed at/and with me. May the peace of our Lord keep you in the coming days. With much love, Joyce

  7. So sorry Molly. You are a strong women although the process of helping a loved one through final days must be making you feel differently. I believe your thoughts are quite normal, not wanting to see her go yet not wanting to see her stay and suffer or maybe not suffer but not live life the way you are used to seeing her live it. Being a caregiver is as you know very trying and stressful. There are so many people who love her and you and would not hesitate to jump in and help you. Reach out, you probably need the help more than you think you do. You are smart to be prepping the house, the frig etc. It helps when you can focus on what you can control. My prayers are there for you and your whole family.

  8. We all relate to death differently. My father died unexpectantly of a massive heart attack when he was 43, and I was 15. My mom made me kiss him before the casket was closed, and to this day, I just can’t touch deceased people. I actually prefer to stand far away from the body. I recently sat with my MIL while she was passing from nonalcoholic cirrhosis of the liver. She was not in pain, but her breathing was deeper and slower.

    To me, the strongest people are those who fight the battle and eventually win to be with God. They are the strongest of the strong. They show me that there is life after death. I spoke to a pastor who was my collaborating teacher about death and heaven, Glen Leverette. He told me heaven is a beautiful place where everyone is whole again, and everyone loves each other. Nobody knows they loved specific people because all love each other. That gives me hope in a world of cruelty. Hope that one day I can experience all of the love, and not have to worry about what is behind me lurking with ill feelings.

    So to all of you, my heart goes out to all of you knowing the pain you are feeling right now. Death isn’t the end for the deceased, it is only the beginning. It is their end for us left behind. They leave us behind to do better, to PAY IT FORWARD, and to learn to do right by ourselves and others.

    It is my hope that all of you find peace in caring for your loving and precious mom and friend. You are being watched, and all of you are earning a new set of wings by caring for others, children included. Molly, your family has been in my heart for years, and I will continue to believe this last stage of life is for those we leave behind. For it is the person passing who has done their very best!!!

    Amen and peace be with all of you!!

  9. Dear Molly,
    My heart, thoughts and prayers are with you and Bell during this very difficult time. They are with your precious Mom too as she travels her own diifficult journey. She is so precious, an amazing person who has lived an outstanding life. You, Amy and other family members are perfect examples of the love and family values learned from your Mom and Dad. Being a caregiver is so very difficult and exhausting. Watching someone you love so dearly go through so much is heartwrenchig, however so worth it. Keeping your Mom at home has been a huge gift to her. God Bless you.
    Hugs and love to all of you.
    Sue Ruggiero

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    Убрал старый домик из бруса, подготовил план участка и занялся разметкой фундамента. Вбил колья с раскосинами, по водяному нашел место поперечин и прикрутил поперечины. Отбил по невелиру черту. Лазер брал с хорошей дальностью.
    По разметке закрутил саморезы и натянул шпагат (стоит копейки).

    По разметке выкопал траншею, постелил гидроизол и засыпал ПГСом.
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    Готовую опалубку закрыли изнутри толстой пленкой скобами и установил промежуточные опоры из кругляка диаметром 8 мм для арматуры фундамента.
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    Приехал бетоновоз, т.к. он весит дофига он вкопался, как только въехал на участок, еле удалось его вытащить. Вобщем обошлось, стали заливать фундамент.

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    WhatsApp\Тел. 8(913)912-16-99 Иван

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