Let’s Talk About Death

Our mom started this blog to educate and we’re not done educating yet. Mom made it clear to not treat Cancer or death as taboo. There’s another phase in this journey.

Recently, mom decided to stop treatment. The last treatment was no longer working and all the tools in the toolbox, all the treatments, have been tried. Upon determining there were no more options, Mom entered hospice and it’s not what you might think it is.

Our in-home hospice nurse, we’ll call her Nurse T, comes over three times a week, but only for one hour. She checks mom’s vitals, administers medicine if it’s the time of day, and asks her pain level if she needs medications. Nurse T set us up with a wheelchair and shower chair. Aside from that, it’s up to us, her caregivers, the remaining 23 hours a day. We are very fortunate to have both the insurance and personal means to receive an in-home private duty nurse if it comes to that. However, finding a private-duty nurse has not been as easy as we would have expected. We’re still trying to figure out that piece of the hospice puzzle. We now use a pill organizer and check off a chart to keep track of medications, we get mom water (with a straw; she stopped eating food), we help her to the bathroom, and to change her clothes. We help her sit up. She no longer can use the stairs so she hasn’t been downstairs. She’s confused about certain things. She’s jaundiced. She’s unsure of her medications. She picks up a TV remote and isn’t sure how to use it. She needs information to be repeated to her, even five minutes after we told her it.

This happened so fast. About one week ago she was still able to go on her iPad, she no longer is on social media. She was able to hold conversations with people, although extremely tired, now she dozes in and out of conversations. She was able to go up and down the stairs, although a struggle, now she stays upstairs in bed. She sleeps about 20 hours. Her body is tired. It is hard for her to speak, she only whispers and in short sentences.

Mom is dying. It’s the awful truth. She’s not losing a fight or a battle, she hated when people said that about others who died of MBC. Mom is ending her journey with MBC, and damn did she show us all how to live with what happens in our lives. We all knew this was how it would end. There’s no god up above that could deliver a miracle where her cancer goes away now. There is no medicine left to help her. She says she’s not in pain, she just wants to go to sleep and not wake up.

We’re mad “Death with Dignity” did not pass in Massachusetts in 2012. It failed 51% to 49%. So many messages sent to us and mom have said people hope she ends her journey peacefully. Death with Dignity would have been the most peaceful way. She would go to sleep and not wake up, just like she wants. But, that’s not the case. Now we drag out this process as her body slowly shuts down, she may enter a period where she is in pain. She is confused. This is not a glorified, dignified, or peaceful death. We’re watching our mom die.

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21 thoughts on “Let’s Talk About Death

  1. Holy dying. Your mom has had the incredible blessing of saying good bye, and you to her. This will still be so hard. I am holding you all up in prayer.

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  2. I also cared for my mom and watched her suffer when the pain meds could no longer make her comfortable. People are afraid to talk about or confront death. I wish the death with dignity act had been successful. My heart goes out to all of you. I hope that peace comes soon.

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  3. Michaela, I read your heartbreaking words. My heart goes out to you and Max and Mark. And mostly, my heart goes out to your amazing mother. May she soon know the eternal, blissful sleep we are all headed to. Love and tears from one of your mother’s greatest admirers! ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

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  4. I met you all on a cruise about 4- 5 yrs ago with my daughter. I had just lost my boss to cancer uterine and watched her slowly die and her body change. Death with dignity shouldn’t even been voted on if one wants to die with dignity it should be allowed no ?’s asked. I remember all of you from the cruise your mom gave me the blog and I never joined , then the other day Something said to check the letusbemermaids and I was saddened to hear the news but I don’t think your mom wants anyone to be sad. She wanted to live and she did , I hope peace comes soon for her and remember she will always be with you. God bless her and three of you.
    Karen

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  5. Such a similar experience for my mother 20 years ago with in home hospice, with myself and my sisters as the care takers. How time has not changed. We were able to manage her pain and anxiety for her final days so we had comfort in that. Thank you for continuing to share your mother’s story.

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  6. Michaela,
    I know your Aunt Cheryl – she is a close personal friend. I also know she is in town this week. She has shared some of what’s been happening with your mom. She also relayed information about her blog that I have been reading.

    I have hope and prayed for your mom since I first started reading her blog. She shared her journey with all of us which was so enlightening and inspirational. But she also shared her thoughts and feelings about her family and provided a little insight about you, Max, and your dad. I grew to know a little about all of you and how close your family is and the love you share. I have also read your blogs and FB comments and I see her strengths in you – wisdom, courage, and grace. While this is a difficult time for all of you, I’m glad you can be with her. Please know you are all in our thoughts and prayers.

    Victoria Lake

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  7. So very sad for your mom. I started my journey with MBC a year ago. I discovered your mom’s blog by chance and it’s made me reflect on my situation and to live life. I thank your mother for that. I don’t know what words can comfort you and your family right now, just know I am sending prayers and love. This is a scary diagnosis, an unpredictable one. We hold onto our hope and hold our family close. Sending love….

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  8. Susan…I hope your children will read this to you. I found your blog accidentally. Reading your description of Mermaids said so much to me, it gave me some meaning to this journey that we did not choose. Today I can only say God bless and goodbye my dear mermaid, you have lived life with a courage beyond description. Thank you for sharing so that those of us who face this day understand …. My deepest sympathy to you and your beloved family for this being your only choice in leaving. I pray your are in our Lords arms soon. Goodbye Dear Mermaid. Love, Joy

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  9. Thank you for sharing this. While I was going through treatment a woman who I had always called my ‘second mother’ was dying. She was 91 and had dementia. Ten days. That is how long it took her to die. Inch by inch. We need death with dignity.

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  10. I will keep you and your sweet Mama in prayer. I pray peace for her, but also for you. I watched liver failure from stage iv breast cancer take my own Mama just over 4 years ago.

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  11. Your mom has been such an inspiration to my mom and our family. My mom too has been fighting the cancer journey since 1992. Diagnosed with breast cancer in 92, cleared for 18 years, came back in surgical scar from original surgery in 2010. She beat it then and was clear until June 2017. It came back this time in her spine. She has been on several chemos. In November they found a spot in her lung and in her liver. They just changed her treatment again. It’s been so hard on my mom but when she reads your mom’s blog it gives her so much hope and encouragement to keep on living and not let this awful disease take over what precious time she has left. I pray for Susan and your family and hope this transition is peaceful. Your mom is loved by so many people that have never even met her. She will forever remain in our hearts and her story will always keep her alive no matter what may happen in the future. Thank you again Susan for sharing your amazing journey with us, you are our hero. Much love, The Terry and The Thurman Families.

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  12. Michaela,
    My prayers are with you and your family. I went to high school with your Mom and she was always so upbeat and outgoing, just as she has been on this journey. I can’t come up with words to express my thoughts and feelings. Just know that I’m tho king of you all and send my love to Susan.

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  13. Michaela, Your Mom is blessed to have you and the rest of your family to love and support her on this journey.
    My thoughts and prayers for a peaceful journey to the next life is with your Mom.
    Watching this happen has its positives and negatives. Bless you and your family❤️

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  14. My heart goes out to you all, the strength and courage that she has had over theses past couple of years is incredibly AWESOME! Hold on to the memories that you have no matter what. Prayers love and hugs to you all. This part is the worst because we feel helpless to the helpless at this. My mom went through this about 10 years ago and lost her battle too. I wrote. A poem about being a chrysalis, a shell because of the pain and suffering from everything she wasn’t the same person. When your Mom moves on she will become a beautiful butterfly and will no longer suffer .

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  15. Michaela, please accept my deepest for your mom. I went to school with your mom, maybe not in her group of friends but, she is a friend then and now. My mom passed in a different way and still feb 13 will make 5 years. Its still hard till this day. I wasnt ready and honestly i dont think she was either. Your mom has shown people and educated them. She in my eyes is the queen. I bless you all and if i was closer would ask to see Susan and tell her Thank you for being my friend. As you know and your brother and father we lost Daniella not sure of the kind but we need CURES……I am tired of losing people i went to school with and care about. Please tell your mom i am praying, blessing for her and thinking of all of you. Please whisper to her that i do honestly Love her. If i can do anything dont hesitate. Susan im thinking of you….❤❤❤❤

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  16. My heart is crying and very sad reading your heartbreaking post! Sending you love, hugs and if there is anything we can help with, we are here! Susan, you are and will always be an inspiration! Much love!😢

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  17. I am thinking of your Mom and your family at this time. Went thru this with my Sister a year and a half ago. Hang in there and I will continue to send up prayers. Thanks for keeping us updated.
    It truly has been an honor reading about your moms journey.
    Love to you all❤️

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  18. Michaela, How your mom and your whole family has handled this journey has been inspirational. I appreciate you and your mom sharing the good, bad and ugly with us. I wish peace and strength for your family during this time. I fully support death with dignity. I have watched my mom pass from lung cancer and an uncle deal with ALS. Those who vote against it have never had to witness a loved one deal with a slow death.

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  19. Thank you for sharing this difficult, deeply personal part of your family’s cancer experience too. Yes, let’s talk about death too. Sending you all so much love.

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