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All TopicsForum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis → Topic: Questions about end of life

Topic: Questions about end of life

Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis —

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: Apr 18, 2017 03:42PM

Iggysmom wrote:

my mom was diagnosed with stage IV breast cancer 5 years ago, she had metastasis to the brain and recently the treatment has not been keeping the tumors at bay and she has decided to not go through with WBR and discontinue chemo therapy. We have had a wonderful five years and I cherish every moment. I am struggling right now watching my mom decline. She is so bloated from her steroids and I can hardly recognize her. The brain tumors have affected her speech and memory but she maintains the same positive and kind attitude she has always had. She has recently began having severe vomiting and her bones are aching so badly she can't walk. I need some support, advice and maybe even some personal anecdotes on similar situations. Nobody I know understands what it is like to watch someone struggle so deeply. I need to know what to expect. Does anybody have an experience with their loved one discontinuing treatment? What should I expect? What does the end look like?

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Apr 18, 2017 04:02PM Moderators wrote:

Dear Iggysmom,

We are so very sorry that your mom is struggling and we are so glad that you reached out here to our community. While you are waiting for some responses you might review the other threads in this forum and perhaps find someone to whom you can reach out via private message. We are also wondering if your mom's health care team has discussed Hospice Care in that she has decided to discontinue chemotherapy. A Hospice team can provide support and care and information around end of life care for your mom and be a great resource for you as well. It might be worth exploring to see if she might be interested in such. In the meantime we hope that you will find support here from other caregivers. Let us know if there is anything we can do to help you. The MOds

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 21, 2017 12:31PM LovingIsLiving wrote:

Iggysmom, I am so sorry you all are going through this. It is without a doubt the hardest thing I have experienced, and my heart and prayers go out to you in this very difficult period.

My brother struggled from his first chemo to his last. No matter what side effects were listed, he seemed to get each one. None of the treatments lasted more than 4-5 months. Every scan was a disappointment. We didn't realize how little time we had until November 2016, when he started to decline rapidly and his need for pain meds increased dramatically, almost overnight. The oncologist recommended radiation to help with the pain. And it did help. And for a couple weeks we had a small ray of sunshine, a hope that he was headed in the right direction. He finished radiation treatment and stopped all other treatment about 6 weeks before he passed. But those last 6 weeks were heartbreaking. His symptoms started to become more non-specific. He lost hearing in one ear, and he became so fatigued that he needed help with every part of his day. We realized that it wasn't the treatment making him feel this way, it was the cancer.

He was in the active dying phase for about 2 days. On Sunday, he started hallucinating and we noticed his speech was slurred, which was unusual for him. He was out of breath with the slightest movement. I quickly realized that we had to tell the family to come see him. And they did. It was so emotional. We were blessed that he was able to speak to everyone. The whole family came to see him and keep vigil. But he made it through the night. My other brother said that in the middle of the night he woke up in a burst of energy on his own to go to the bathroom. And he stayed up a few hours and talked to him about everything. That was the biggest sign that we were close to the end. The final bursts of energy.

The next day, Monday, he was "awake" but barely aware. He did not open his eyes except once to see one last aunt who came to see him. Hospice came in the morning and gave us the comfort pack which we were terrified to use. She set him up with oxygen, which didn't seem to help at all. His body felt cold, and his breaths were labored.

At 6pm we decided we should give him a small dose of the liquid morphine and haldol for delirium. Neither of which seemed to do anything. I didn't realize it at the time, but I think his body was rejecting these medicines because he was ready to go quickly. He never fully lost consciousness and he was able to speak a few short words up to the last moments. I was scared that we were doing something wrong so I called hospice after hours. No one came, no one called back.

At 8:20pm, he startled, opened his eyes wide, looked up at the ceiling. He reached his arm up, and let out two slow breaths. Within 10 seconds, he had passed. It was so quiet, so peaceful, so heartbreaking and shocking all at the same time.

I collapsed, blacked out, and I'm not sure what happened in minutes that followed. I know that paramedics came to pronounce the death. He did not have a DNR so they attempted resuscitation. We knew he was gone, but it was something they just had to do. I will never forget that night. There were things we should have done differently, but nothing could have saved him. His doctor should have given him an honest answer on when to stop treatment. Hospice should have been more helpful and not just give us medicines and leave. And he should have had a DNR.

I don't mean to scare you or make you think that everyone experiences it this way. When I look back on it, I feel like my brother wanted to go quickly to spare us the heartache and suffering. He was always so caring. My advice to you is to make sure that hospice will provide the services you need. Get them in early enough so you'll know what to do in advance. Keep friends family close and accept help from anyone you can, because you will need the emotional support. No one can do this on their own. I know how hard it can be to watch someone go through so much. Stay with your mom as much as you can. Talk to her while she can still speak. Tell her that you will be ok no matter what happens. I will keep you all in my prayers and I'm sending you a big hug.

"The Lord is my light and my salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid?" (Psalms 27:1). The stats below are mine. ♥ My brother lost his fight against breast cancer on Feb 27, 2017 ♥ Dx 10/1/2015, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- Surgery 11/10/2015 Lymph node removal: Left; Mastectomy: Left Hormonal Therapy 12/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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