Caregiving and surviving Cancer with a loved one!

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Fentisha
Fentisha Member Posts: 7
edited June 2014 in Caring for Someone with Breast cancer

Well, i never thought I'd be in this place.  No one does.  Alas my grandmother has metastatic breast cancer, lung, bone, brain.   She is starting head radiation today (83 years old)., and will lose her hair.   I thought my daughter and I would give her a haircut tonight - make it fun!   She is on hormone therapy as well and a new xgeva for bone mets.    She is in great condition, walking, talking and still pretty active.   I was wondering if any caregivers out there have any special tips.  Also if anyone walked thru this with their loved one and if they happened to journal the journey?   Just wondering what this journey looks like and what we should and should not be doing?  How best do I help the woman who's always helped me - take this journey gracefully (as I know she wants too).   

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2014

    Fentisha I'm so sorry your family is facing this. I don't really have any answers for you, but I wanted to recommend this little pamphlet 

    Gone From My Sight, The Dying Experience, by Barbara Karnes, RN

    It is available on Amazon.com and other places. I found it to be quite lovely.

    Gentle hug to you and your family.

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  • Fallleaves
    Fallleaves Member Posts: 806
    edited January 2014

    Fentisha, your grandmother is so lucky to have you! My dear Aunt passed away two years ago of breast cancer, and I was not her main caregiver, but I did spend a lot of time with her. I know every single thing people did to show they cared (like you and your daughter cutting your grandmother's hair) meant the world to her. I would say, try and get out and do things with her as much as you can. That's great that she is still active and walking. Try and take advantage of that. Even when my Aunt had to use a wheelchair she really enjoyed getting out of the house, and we made some really nice memories those last few months. 

    It is hard seeing someone you love so much going through such a difficult time. Just know that having you in your grandmother's life makes things better for her. I don't really have many tips about what you should or shouldn't be doing. Just being there and giving her love and affection and an ear for her worries is enough.  When we got towards the end, hospice (in home) really helped my Aunt stay comfortable and was a big support to our family.  

    I'm sure you'll get some better advice than mine. I just want to wish you all the best!

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  • wyo
    wyo Member Posts: 541
    edited January 2014

    Fentisha- your grandmother sounds like a peppy fighter- there is someone on this site who posts on the stageIV forums a lot and has good experience with whole brain radiation- I hope she sees your post.

    My experience with my mom is slightly different but I was her caregiver remotely and nearby when I could- She is 81 this year and had stage IV lymphoma (bone mets) followed by stage I esophageal cancer 2 years apart.  She had chemo for the lymphoma and rads for the esophageal.  She did really well with radiation- said it was 100x better than her chemo was.  She lost her hair with the chemo and it did not really bother her like I thought it would- she got a wig for going out but said it was itchy.  Remember that generation actually wore wigs because they wanted to back in the 60s and 70s it was no big deal hahaha

    Her issue was and is diet/weight- she is tiny and dropped down to 88lbs- I was really worried.  Got her to drink protein shakes and eat small portions of really calorie dense foods. Even today with no treatment going on she just has to really force herself to eat. 

    Being with family and even going out to eat I notice she eats a lot more than if she is at home by herself preparing a meal for just her. Having you and your daughter to spend time with her, help her out and support her is a wonderful thing and when she says "oh you are too busy" or "I don't want to bother you"  I didn't listen I said- Mom it helps me deal with this to help you.  

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  • Fentisha
    Fentisha Member Posts: 7
    edited January 2014

    thanks for the info Hopefull1999 - I need to know what to expect.  She only had one treatment and from other meds is so constipated she ended up in the hospital yesterday.  I haven't slept in a while.  We are desperately rallying to find in home full time care, get palliative care set up, and all that stuff too.   It's kindof crazy right now.   Was your mom throwing up from the radiation at all?  or just eating and sleeping?  when did that start - during or after the radiation?  

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  • Fentisha
    Fentisha Member Posts: 7
    edited January 2014

    well my grandmother after six radiation treatments ended up in hospital, from what was thought to be constipation, but she did stop eating after the radiation started, and was nauseous, and throwing up, so she has now decided to stop.   Don't blame her.   She is being released today and on her way home.  I guess we will look at pain management and see where things go from here.   

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  • Fentisha
    Fentisha Member Posts: 7
    edited January 2014

    I guess after the radiation and all things are said and done, you are right hopefull1999 my grandmother is sooo tired.  Her personality has changed.  She is not up and about or happy and outgoing.  I don't even know who she is anymore.  She is abrupt and short and difficult to deal with.   She has been my whole world for soooo long and now this.  Cancer is evil.   And it's sooo rampant.   I just don't understand.  I guess something we aren't meant too.   Praying the good Lord takes her quickly so she suffers no more. 

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  • Fentisha
    Fentisha Member Posts: 7
    edited February 2014

    On February 16, 2014 my grandmother passed away from Metastatic Breast Cancer.   The dying process was ...well...horrible.   I can only recommend that before deciding to walk this journey with your loved ones at home that you consider hospice or palliative care that is available for your loved one.  The you tube video by Barbara Karnes on "gone from my sight" is excellent.  However, it does not prepare the mind, for the trauma of watching death by Cancer happen.   I do not have the words.     I will be removing this post soon.  Thanks to all the support found here.     

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  • Justme123abc
    Justme123abc Member Posts: 7
    edited March 2014

    I am so sorry for your loss I lost my mom with this horrible disease Feb. 7 2014 My heart goes out to you I understand.

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