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Topic: I wish I knew how long...

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

Posted on: Sep 6, 2019 09:38PM

Dishsoap wrote:

Hi there,

First of all, reading the posts here on this forum has been a big help to my family and me. My mom has breast cancer metastasized to her brain, liver, and bones. In July, she was given a month to live but she is a stubborn lady! :)

My mom is in bed for much of the day (I'd say about 18-20 hours total) but is mostly awake, maybe taking a 3-4 hour nap in the afternoon. She has almost no strength in her legs but if someone helps her get upright she can walk with her walker usually. She also eats two small meals per day and is using the restroom OK. She is very "with it", not much strength or energy but will use voice-to-text to message friends and family all day on her iPad.

She is so frustrated with things as they are, she has had a couple of discouraging falls (no major injuries) and is irritated by needing my dad and I to do things for her. She told me today that she thought she would just get tired, fall asleep, and not wake up. She has taken care of every last thing she can think of that needs to be done before she passes. I've even made and frozen about 200 blueberry pancakes and muffins because she wanted my dad to be able to eat them for breakfast after she's gone LOL.

I didn't expect this process to be so crazy. Some days I think the next day will start without her, and some days I think it could be months.

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Sep 7, 2019 12:48PM Moderators wrote:

Dishsoap,

We're so very sorry for all that you are all going through. The transition can be such a bittersweet time. We're sure she is grateful for all you're doing for her to prepare, and that you're right there with her. We know it's not easy for anyone involved and we're sending wishes for a peaceful passing when she's ready.

Big hugs to you,

--The Mods

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Sep 8, 2019 12:34PM Dishsoap wrote:

Thank you. Since posting that I think now she is close to the end. She is delirious and her speech is slurred, and is complaining of chest pain (taken care of by pain meds).

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Sep 8, 2019 12:42PM - edited Sep 8, 2019 12:44PM by mike3121

Dishoap, here is my wife's current condition which seem similar to your mothers. Aside from the brain mets my wife has bone mets only. My wife's Oncologist has not even mentioned hospice to my wife, perhaps because her chemo, eribulin (Halavin), has worked so well for her. From what I've read her tiredness and mental disorientation will pass after a few months.

After 4 violent seizures, brain surgery to remove the cancerous part of her dura then 11 days of WBR she's a mental and physical mess. She has very little short term memory and acts, in many ways, like a small child. Also, she's totally exhausted. She seems to be locked into doing obsessive compulsive things such as going to the bathroom every 5 minutes or suddenly wandering around the house pushing her walker muttering to herself looking for something. From what I've read they say this will all pass, It's been a while and I see no improvement. I'm worn out and very disheartened.

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Sep 8, 2019 12:55PM Dishsoap wrote:

Mike, I hope that your wife's mental symptoms pass quickly, at least with my mother I know it is near the end, but with your wife it sounds like you do not know how much longer it will go on. It is funny, my mom also goes to the bathroom about every 15-20 minutes! Even made my dad take the bathroom door off because "it is such a waste of time" LOL.

Have you considered asking her doctor for some caretaking assistance? I cannot imagine how worn out you must be dealing with this as her only caretaker and without the support of hospice nurses for relief!! My dad and I are in this together, and even with hospice helping out, we are at the end of our rope. When we were deciding whether to stop treatment or not (incidentally, also eribulin!) we were given the choice of hiring either home health (if we pursued treatment) or hospice (if we did not pursue treatment) for home caretaking duties. Both were covered under Medicare, and functionally there is little difference between the two.

I hope that your wife improves soon, and that you are able to somehow find time to rest and recuperate.

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Sep 8, 2019 01:36PM - edited Sep 8, 2019 01:37PM by mike3121

The Radiologist was quite frank with us; with radiation only she would just have month's to live. However, with a chemo that works and holds the bone mets in check who knows how long. Radiologist said with brain mets the patient would slip into a coma; either a chemical induced or one would occur naturally. Basically the brain tells the body what to do, to breath, etc. The brain would cease to function with the body and the patient would die peacefully in their sleep. I'm not sure what happens with liver mets though.

God be with you that you get through this. Remember your father will be very lonely. Not so much after the funeral but later when everything begins to settle down. I often see older men sitting alone in a restaurant nursing a cup of coffee along and not wanting to go back to a dark and lonely home.

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Sep 8, 2019 02:30PM Dishsoap wrote:

My mom lived for years with bone and liver mets, and most of this time she had very little pain. I hope the same will be true for your wife - that the disorientation is just from the surgery and will heal quickly and the mets can just be treated like any old chronic condition. I'm glad to hear that the eribulin is working so well for her (tends to not lead towards hair loss too which I bet your wife loves). I think liver mets have a very similar end result as with brain mets due to unfiltered toxins building up in the brain. But I haven't asked these questions of the hospice nurses, only looked around on the Internet.

You're so right about my father. Especially since he is relatively young (61), and my sister and I both live a 12+ hour drive away, I worry a lot about him. Other than nightly phone calls once things die down after the funeral, I am at a loss for what to do. If you have suggestions, please please please throw them my way. He unfortunately cannot move to where my sister and I are, as my grandmother (mom's mom) passed away this year and he promised my mom that he would take care of my grandfather (mom's dad) after my mom passes away. He has no living relatives, some church friends but that's it...

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Sep 8, 2019 02:49PM mike3121 wrote:

Have your Dad get an antique car to restore, something fun. Or suggest some hobby he's shown a past interest in. You don't want him, night after night, sitting alone on the sofa watching TV.

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Sep 8, 2019 03:00PM Moderators wrote:

We are so sorry for all you are going through. We personally have all been there, and understand just how painful this is.

mike3121, we hope you have help/support at home. Hospice can be so helpful with this, and remember, people can go on and off of hospice, as the needs change, and as your wife improves.

Dishsoap, we are sending you also gentle hugs, and strength. Is it an option that both your father AND your grandfather move closer to you?

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Sep 8, 2019 03:10PM Dishsoap wrote:

The hobbies suggestion is a great one thank you! He has more back problems than he used to, but he is a car guy, so I bet we could figure something out. If nothing else, it might be fun for him to try some different things.

I don't know how things will shake out as far as taking care of my grandfather either... I'm a grad student so I'm not sure where I will "settle". My dad and grandfather have never lived outside of this neighborhood in their entire lives (we live very close and always have). But who knows how circumstances will pan out. I appreciate the hugs and strength. My mom just sat up long enough to make a long voice recording in one of those recordable greeting cards to be given to my dad after she is gone. She said I am the only one she trusts enough to make sure he gets it afterwards. I think I have a backup of that damn file on every piece of electronics I own LOL


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Sep 11, 2019 08:38AM Dishsoap wrote:

Wanted to give an update... my mom passed peacefully at 4AM this morning. All she could talk about yesterday is how much she just wanted to go home to heaven... I am just heartbroken, there aren't words - but I also have a joy that she is not suffering any longer.

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Sep 11, 2019 09:16AM helenlouise wrote:

Oh Dishsoap, I just found and read yourthread through. I am very sorry and sad at this news. Sincere condolences to you and your family.

Sending you strength and love. X

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 2/28/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/28/2018 Chemotherapy 8/29/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Sep 11, 2019 09:37AM Micmel wrote:

Dishsoap~I am very sorry for your loss. My father passed away on May 11th 2019, exactly 4 months today. I am still numb and still try really hard to remember his voice. what a wonderful Daughter you are. Remember to also take care of you. I know it's hard. Boy do I. But remember no more suffering. Remember the silent times together, the unspoken touches of love. I am deeply sorry. 🌹😞 but i understand. I was estranged from him for 15 years prior. But I stepped up when no one else would, or did. So I have that happy ending. I feel your pain you sweet woman. Hugs dear sister!

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Sep 11, 2019 09:42AM edj3 wrote:

Sending love to you and your family.

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 5/31/2019 Whole-breast: Breast
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Sep 11, 2019 09:58AM santabarbarian wrote:

((((((hugs))))))

pCR after neoadjuvant chemo w/ integrative practices Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Sep 11, 2019 10:22AM Moderators wrote:

Dear Dishsoap,

We are so very sorry for the loss of your mom. Thank you for sharing a little bit of her story and yours with our community. It seems that you still will have a full plate as you grieve for your mom and worry about your dad in the weeks to come. We hope that you will find support in the love and care of family and friends. We are thinking of you.

The Mods

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Sep 11, 2019 10:51AM mike3121 wrote:

So sorry Dishsoap, no words can express. I will be walking in you and your fathers shoes someday and it scares me. Drop by this forum sometimes and let us know how you and your father are doing. Grief Immediately in and around the funeral is one thing but it's the long haul that counts; concentrate on that.

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Sep 11, 2019 11:32AM Trishyla wrote:

Mike,

I know by your posts in recent days that you are in a rough place right now. I think on this site we so often focus on how the patient is doing, that we forget to check up on how the caregiver is doing.

I have been both a patient and a caregiver. My sister and I cared for our bedridden mother for eight months before she died. I think in so many ways it's tougher to be the one to care for someone you love so much. I tell people it was the most horrible and the most wonderful thing I've ever had to do.

I've been where you are now. The one piece of advice I would give you is to take some time away, just for you. Pay attention to you, and how you're doing. You matter, too.

I can't do much for you, Mike, except to send love and support for what you're doing. As hard as it is, somewhere inside she knows what you're doing for her. And even more importantly, you know. When that time comes, and you are alone, that knowledge will comfort and sustain you.

Be well, Mike.

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 8/5/2017 Xeloda (capecitabine)

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