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Topic: Please share "tips" you may have for caregivers

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Aug 24, 2018 10:53AM

Moderators wrote:

For people living with metastatic breast cancer, caregivers are an important source of support and an integral part of their journey. Your loved one may provide care by helping you communicate with your health care teams and insurance company, providing transportation, preparing meals, or being a source of emotional support.

Just like living with metastatic breast cancer can be a learning process, figuring out how to provide the best care and support to a loved one living with the disease can take time.

As a person living with metastatic breast cancer who relies on a caregiver, what do you wish they had known in the beginning? To help other caregivers new to the role, we'd like to hear your story, and any "tips" you may have for caregivers. Your advice could appear in an upcoming feature for caregivers on Breastcancer.org.

If you would like to share, either add to this thread, PM the Mods, or mail to mjenkins@breastcancer.org.

Thank you!

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Aug 27, 2018 10:46AM Moderators wrote:

Bump. Could use your help.


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Aug 27, 2018 11:47PM illimae wrote:

Do - Remember that we may move more slowly or need assistance.

Listen, engage and have some non-medical topics of discussion. We get tired of cancer talk too.

If ok with the patient, ask relevant questions at appointments, not “how long does he/she have” or if their lifestyle caused it but what’s the next step, what type of treatment options does he/she have, what is the expectation for this procedure or medication (good and bad). The patient may not understand or remember what doctors say, notes are helpful.

Don’t - Do not nag or be overly critical, we do not need our remaining time to be stressful.

Try not to be offended by our lack of enthusiasm for food, outings, people, pain and medications can impact our ability to enjoy normal things and make us very cranky.

If you must google, just remember that much of the info is old and non specific, people, cancers and treatments vary wildly.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 28, 2018 10:54AM - edited Aug 28, 2018 10:55AM by Moderators

Thank you so much! We really appreciate this, illimae.

And need more, so keep posting! Medicating

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Sep 2, 2018 07:13AM Moderators wrote:

bumping again.

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Sep 2, 2018 08:00AM KatyK wrote:

My DH is an incredible caregiver/partner. We have been together many years and met young so we know each other quite well. I could not go through this journey without his love and support. I think it’s important for people to know that when you’re having a rough day - maybe lots of doctor appointments, dealing with emotions, others not being what you want/need it is also typically a rough day for your caregiver too. You both may need low expectations on those kind of days. Sometimes I feel like we both need a caregiver. I guess I’m saying give them a break/pass at times.

Not exactly sure how to deal with this one but be prepared for some people in your life to not respond in a supportive manner (this surprised me) either by disappearing, saying “mean” things, etc. I wish my DH and I had been more prepared to deal with some of this and allow your caregiver to deal with some of this or be a buffer. Fortunately we have a good support system of friends and family but I have lost a few people in my life through this cancer journey and it hurts.

A cancer diagnosis can bring up issues in your relationship Not necessarily a bad thing just be prepared for it to deal with the issues in a productive manner.

She believed she could, so she did. Dx 7/2017, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Sep 3, 2018 07:44AM Moderators wrote:

Thank you KatyK for your candor. It is really helpful!

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Sep 3, 2018 09:35AM pajim wrote:

This isn't a tip for "caring for" but for caregivers themselves. Sometimes I think spouses and families have it harder than patients. They have to watch their loved one go through this.

So my tip to caregivers is also to care for yourself. You may need help, counseling, sleeping pills, etc. Do not assume that just because you are not the ill one that you are 'fine'. Ask for help when you need it.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/27/2013 Femara (letrozole) Hormonal Therapy 4/22/2013 Faslodex (fulvestrant) Targeted Therapy 2/25/2016 Ibrance (palbociclib) Chemotherapy 6/19/2017 Xeloda (capecitabine) Targeted Therapy 8/15/2018 Verzenio Chemotherapy 1/2/2019 Halaven (eribulin)
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Sep 3, 2018 10:40AM Moderators wrote:

Dear pajim,

Thanks so much for sharing this. It is so important. The Mods

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Sep 6, 2018 11:07PM LoveFromPhilly wrote:

I second what pajim wrote. I think being a caregiver can become isolating and some people end up never leaving their homes because they’re so busy taking care of the patient. Make sure to make very specific plans to get away and take little vacations. Get care coverage for your loved one whille you are gone. Chances are, nothing crazy or terrible will happen while you are away. It’s beneficial for everyone to take breaks!

I am a caregiver and having received this diagnosis has made me have to step back and re-regulate my caregiving so I have enough time to self-care. I am soooo grateful for my “me” time. Any caregiver that isn’t getting “me time” knows the feeling and gets incredibly burnt out and moody. Please be sure to share the responsibility of care taking with others. There are so many people that would love to help, they just may need specific instruction or direction of how they can also help.

Hope this makes sense! Thanks Mods!
💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Sep 18, 2018 12:43AM chef47 wrote:

I struggle to find anything outside of what these wonderful folk have said, maybe this one; do not rely on the patient for all the info on the disease or prognosis or ongoing health. Get informed by researching things yourself and going to appts. The patient may not be able to relay everything to the caregiver. So educate yourself ahead of time and stay updated. Carefully know when to step in and take over with decisions even if it’s temporary. It might be that they never needed help before in that area and may not ask, you have to stay on top of things from the sideline, ready to step in if needed. In regards to meds, keeping up with food intake, or even sleep schedule. I know for me it’s been so up and down it takes a very vigilant crew to know when or how I might need help, especially if I’m too weak or sick to tell them, and it might come out of nowhere meaning the day before you were fine. So stay ahead of the game. Learn what “could” happen and be prepared even if it’s unlikely? Things can be so overwhelming and we can get tired of having to ask especially for things outside of basic needs, so maybe there’s a list somewhere of important things that need to be handled depending on your situation, like if you as the patient are a homeowner or the caretaker of a home then somethings that might get overlooked during all the chaos should be addressed and taken care of, like paperwork. These things are tedious and may not even be a priority to the person but if you could make it easy for them to get done that could be useful. Anticipate and prepare for future needs as well. Take good care of yourself and always be looking for help, you don’t have to do it all, you just need to make sure it all gets done:)
Dx 2/14/2013, IDC, 1cm, Stage IIIA, Grade 2, 9/13 nodes, ER+/PR-, HER2- Surgery 3/7/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap Surgery 1/30/2018 Dx 1/31/2018, DCIS/IDC, 2cm, Stage IV, metastasized to bone/liver/lungs, Grade 2, 9/13 nodes, ER+/PR+, HER2- Chemotherapy 5/14/2018 Taxol (paclitaxel) Chemotherapy 9/19/2018 Doxil (doxorubicin) Chemotherapy Doxil (doxorubicin), Taxol (paclitaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy TAC Radiation Therapy Whole-breast: Breast, Lymph nodes
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Oct 26, 2018 02:47PM Parrynd1 wrote:

Caregiver Tip: Let me do the things I can still do. So much of my independence has been taken. Please don’t insist on taking more. If I am ok to drive, let me drive. If I am ok to make breakfast, let me make breakfast. Please don’t make me feel sicker than i already am by treating me like I can’t do anything...unless I really can’t.

Talk about how things will be communicated. Some people may want you to assume they need help with everything, while others, may want a hands off approach. My spouse and I have talked about how we want to go about our relationship as caregiver/ee. Knowing what boundaries each person is ok with and expectations have helped us a lot. He trusts that I will communicate what I need help with or how I’m feeling. Open and honest communication is key.

Just know that regardless I’m grateful and appreciate you wanting to help and be so involved. Sometimes I get frustrated and it might come out towards you. I’m sorry and please be patient with me. I’m going through a lot and learning how to live with this disease and/or treatment can be a hard adjustment. Being patient and kind is golden.

Let me help you if I can. Taking care of those that I love makes me feel good

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/29/2016 Other Chemotherapy 2/21/2017 AC Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/14/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/4/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/23/2018 External: Brain Chemotherapy 6/27/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other

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