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Topic: Sadly, my role as a caregiver ended

Forum: Caring for Someone with Stage 4 or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Oct 29, 2020 12:14AM - edited Oct 29, 2020 09:38PM by PoppyFlower

PoppyFlower wrote:

My SIL, whom I've been taking care of since Aug passed away on Oct 25th in the hospital while I held her hands and told her she was one of the bravest persons I know.

As you may have read my story about my caring for my SIL whose diagnosis of MBC in August took all of us by total surprise. I went to help her, to take care of her, at my in-laws' home since then. She's the only sibling my husband had and I was the only person who could be there to help her. And also for my husband since I knew how much he wanted to help her but he couldn't physically or emotionally. So I was the obvious choice. I took care of her at home as best as I could since being a hospital wasn't the answer.

I had to call 911 on the morning of Oct 15th because of excruciating pain that left her paralyzed in one position for 3 hours, crying. I could no longer care for her and she knew her time had come and so did I. :(

Her MO wanted to see us BOTH that day (I knew deep inside why) but obviously, we never made it. Instead, he came to the hospital to see both of us and told us the devastating news that the treatment was not working and he wasn't going to recommend chemo either. And that he recommended palliative care at the hospital and wanted to see how she does there. He didn't even recommend moving her to a hospice. Outside her room, I asked him if he thought she would pass way in the hospital and he said, "yes"...maybe within a week.

I was crushed but I expected it as much. She was put on Morphine and Ativan. She was comfortable, pain-free, but became not very coherent pretty fast. She stopped recognizing people and started to get confused. Due to COVID, for being the caregiver of a Comfort Care patient, I was allowed to stay in her room all day and I wasn't allowed to go back and forth. I stayed in her room every day until 9PM. But on my birthday, Saturday 24th, when I went to her, she didn't recognize me. She was breathing very slowly and I knew her time had come. I asked to stay and the night nurse agreed that she shouldn't be alone. I played music, read to her, gave her a mani/pedi, combed her hair, gave her a facial, and held her hand until she left the earth side on Sunday morning.

I wasn't *that* close to her (she was a VERY private and reserved person who never wanted to impose on my family even though my husband was the only sibling she had) before this but I felt like I was the only person who could help her so I dropped everything and came to help. Besides, she took care of our in-laws for the last 4 years due to their failing health. At least I can do was to help her now. With my Chiropractic background, giving medical attention was no problem. I drained her lungs via Pleurx system weekly, cleaned her malignant chest wounds twice a day, changed her Depends, cleaned her bottom, cooked meals that she actually enjoyed despite her nausea and vomiting, and listened to her stories day and night.

HOWEVER, SHE was the hero. She was so brave, strong, and optimistic until the end. Yes. She made mistakes in not addressing her condition earlier but she tried, in her own certain terms, to be responsible for her own health. And I respect her for it.

She will be missed.

Thank you to every one of you who read my story, commented, gave advice but mostly, for allowing me to learn about this special community of brave women and men who defy the odds and fight daily.

Lastly, if you there is an organization that uses all the donations - I mean, MOST of it - for breast cancer research you like, please share in the comments.

I gave a plaque with the phrase below to my SIL when I first got here and I placed it in her casket.

And I want to share it with ALL of you because......

You are

BRAVER

than you believe

STRONGER

than you seem

SMARTER

than you think

AND LOVED

more than you'll ever know

a.a.milne

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Oct 29, 2020 12:39AM JKL2017 wrote:

PoppyFlower, I'm so sorry for your loss. It sounds like you did everything you could to make your SIL's last months as comfortable as possible. That was a wonderful gift to both her and your DH. You asked for a donation recommendation - I have been giving to Metavivor for years and I support them without reservation. (I particularly appreciate that they focus on metastatic breast cancer.) Check them out at http://www.metavivor.org/ Take care of yourself.


Dx 2/2/2017, ILC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/7/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 3/19/2017 Multi-catheter: Breast Hormonal Therapy 5/23/2017 Arimidex (anastrozole), Aromasin (exemestane)
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Oct 29, 2020 01:50AM obsolete wrote:

PoppyFlower, my heartfelt sympathy. Thanks for giving & sharing your heart.

"Don't grieve for me, for now I'm free,

I'm following paths God made for me. I took His hand and heard Him call, Then turned, and bid farewell to all.

I could not stay another day, To laugh, to love, to sing, to play. Tasks left undone must stay that way, I found my peace... at close of play.

And if my parting left a void, Then fill it with remembered joy. A friendship shared, a laugh, a kiss. Ah yes, these things too, I will miss.

Be not burdened… deep with sorrow. I wish you sunshine of tomorrow. My life's been full, I've savored much. Good friends, good times, A loved one's touch.

Perhaps my time seemed all too brief, Don't lengthen it now with undue grief.

Lift up your hearts and peace to thee, God wanted me now, He set me free."

Author unknown

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Oct 29, 2020 02:00AM NancyHB wrote:

PoppyFlowers - I’m so sorry for your loss. Thank you for taking time to come back and share this experience with us. As difficult as the last few weeks have been for both you and your SIL, there is a true beauty in the time you shared together. Your energy and dedication to caring for her with so much respect and love was a true gift. Please find time to take care of yourself now, too. You’ll both remain in my thoughts.
"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/4/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/18/2012 AC + T (Taxol) Radiation Therapy 6/11/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/14/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 2/29/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/20/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone
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Oct 29, 2020 02:24AM AliceBastable wrote:

PoppyFlowers, my sincere sympathy on the loss of your sister-in-law. How nice for her that you were there for her to the very end; that was a lovely - and loving - farewell gift from you. Peace to you and your husband and all who loved her.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Oct 29, 2020 08:52AM JavaJana wrote:

PoppyFlower, I'm sorry for your and DH loss but happy you were able to give your SIL the dignified death she desired. I'm happy she had pain support at the end. You were a hero in my eyes, and I'm sure to her. Thank you for sharing with the group. I pray your grief is short and her memory is a blessing! I second metavivor or MBCalliance as charities.

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/18/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/7/2020 Taxotere (docetaxel) Targeted Therapy 4/7/2020 Perjeta (pertuzumab) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Hormonal Therapy 8/12/2020 Femara (letrozole)
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Oct 29, 2020 09:29AM NineTwelve wrote:

What a beautiful post. Bless you for your active caring, listening, handholding. Thank you for sharing with us. I'm very sorry for your loss.

Dx 9/12/2014, IDC, 4cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 9/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 10/1/2014 Dx 7/2016, IDC, Stage IV, metastasized to bone/lungs Hormonal Therapy 8/16/2016 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 8/16/2016 Ibrance (palbociclib)
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Oct 29, 2020 10:52AM LB13 wrote:

PoppyFlower - God Bless you for you sweet, sincere post - for your kindness and compassion for your sister-in-law and for the huge heart you share with others. We will all be blessed if we have someone as caring as you in our lives.

Dx 1/28/2020, IDC, Right, 1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/24/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 4/27/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/11/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 29, 2020 10:59AM Chicagoan wrote:

Poppyflower-I'm so sorry for your loss. Thank you for updating us on what happened-I was concerned and feared the worst when things went silent. Sounds like you did a wonderful job of caring for your SIL.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Oct 29, 2020 12:21PM Beesie wrote:

PoppyFlower, I am so sorry for your loss. What you did for your SIL is what I would wish for everyone as they approach the end of life. How wonderful that your SIL left this earth knowing she was loved and cherished.

My heartfelt condolences to all who loved your SIL.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 29, 2020 01:57PM Trishyla wrote:

I'm so sorry for your loss, PoppyFlower. Death is always a shock, no matter how expected. Do care of yourself and be safe.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
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Oct 29, 2020 05:43PM Maryjv wrote:

Very sorry for your loss, may she Rest In Peace 🙏

Dx 11/22/2019, IDC, Right, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 12/30/2019 AC + T (Taxol) Surgery 3/27/2020 Mastectomy: Left, Right Surgery 8/27/2020 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Oct 29, 2020 07:32PM MinusTwo wrote:

Poppy - Thank you for the loving care you gave your SIL. I'm holding you in my thoughts.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 30, 2020 06:00PM PoppyFlower wrote:

Thank you everyone...I wish you well and hope that you find someone to talk to in the darkest moments.

And @Obsolete, I really appreciate the poem. I will pass it onto my husband who is having a difficult time dealing with his sister's death.

God bless you all.

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