How can I help my family watch me die?

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lovemyameliasky
Posts: 6
Joined: Tue May 08, 2018 7:51 am

How can I help my family watch me die?

Postby lovemyameliasky » Wed May 16, 2018 5:57 pm

In case you missed my previous posts, I'm 36 years old, mother to a beautiful 5-month-old baby girl, loving wife of nearly 12 years to my amazing husband and soulmate, and I've just recently been diagnosed with colon cancer that has spread everywhere. And I do mean everywhere: my brain, spine, lungs, ovaries, liver...there's nowhere it hasn't touched. The only symptoms I had were a slightly sore back and slightly narrower stool. There's nothing the doctors can do, and I have only weeks or days to live.

Somehow I've been coping semi-okay I guess...at times feeling something like a peace that passes all understanding, though also at times feeling futile anger and sometimes even hope that I'll be miraculously healed, even though I know it's not rational. I've written letters goodbye to my loved ones, made arrangements for after I'm gone, and in general feel "okay" about what will happen after my death (despite feeling immense and inexpressible sadness that I won't be there to watch my beautiful baby girl and my amazing nephew grow up and to take care of my husband and family. But that's not the plan for my life, so I have to accept it and move on.)

What I'm having a REALLY hard time with is how my parents and husband and sister will handle my actual dying part. I know that once I'm gone it will be terribly difficult for them (we're all such a close-knit family), but I won't be around to help them deal with that, and just have to trust that God and family and friends will see them through. What I will be around for (presumbly, if I'm not completely unconscious) is watching them deal with my actual death process. My wonderful mom was a nurse for 41 years and my mother-in-law is also a retired nurse, and they want to take care of me as I die at home with the help of hospice. My mom has seen MANY people die in her line of work, but I know that watching her own daughter go through the process will be immeasurably more difficult. And of course my darling husband will take it extremely hard too. :(

Is there anything I can do to make this whole dying process easier on them? I've read about the things that hospice provides and the care that's required at the end-of-life, and it's terrifying. Oh how I wish I could just pass away peacefully tonight in my sleep!!! Why can't euthanasia be a legal option? I'd so much rather take it than allow my loved ones to suffer needlessly, with no hope. I'm sorry this post is so negative. I don't want my last thoughts and actions on this earth to be that way. But it's unbelievable and incredibly ironic that just five months ago my mom, mother-in-law, and husband were in the delivery room with me while I was in pain waiting for my gorgeous daughter to be born. Now they will have to watch me die, and will get no bundle of joy out of the deal--only a dead daughter and a dead wife. I just wish that I could somehow spare them this.

crazylife
Posts: 254
Joined: Wed Dec 30, 2015 11:29 am

Re: How can I help my family watch me die?

Postby crazylife » Wed May 16, 2018 6:41 pm

You are amazing to be thinking of them during this horrible time! I think grieving is just a part of the process and I am not sure you can make it easier.

Is there nothing they can do to extend life for a bit longer with chemo? Maybe your cancer will respond to it so you can have more time with your little girl.

I am praying for you every day!
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

child#6
Posts: 29
Joined: Wed May 16, 2018 7:51 pm
Facebook Username: John Smith

Re: How can I help my family watch me die?

Postby child#6 » Wed May 16, 2018 8:19 pm

You are right,it's a given. It's always hard to say goodbye. But since they are nurses and they want to help you AND hospice is something YOU want. Let them care for you and your husband at this time. Do you think having your mother and mother in law would be of support to you both? If so..why not do it? But you know the personalities involved. When my mom was sick it was at times hard,but I am convinced it would have been even harder afterwards had I not had that intimate experience of caring for her whether it was doing an errand like picking up meds or shopping for my sister with whom she lived. It also left my siblings and I with no regrets.Most of us could help but some of us couldn't and each person's decision was respected They also might be a good support in helping with the baby so your husband could spend more time with you and your husband can spend more time together with the baby without you worrying if you knew things were being taken care of.

Trust your judgement. Talk about this with your husband if he is at all able to handle it. Tell him what you want and what you need and let him tell you what he needs right now. I think you will arrive at a good decision together.

Canada777
Posts: 57
Joined: Mon Mar 28, 2016 6:24 pm

Re: How can I help my family watch me die?

Postby Canada777 » Wed May 16, 2018 9:21 pm

I'm impressed by how well you seem to be handling everything planning wise and how much you have already accomplished. You've already made some things easier on your family. All I can really offer you is my thoughts as a caregiver (DH has stage 4 cancer) and what I would appreciate when it is my time to watch someone I love die. I would want to have spent as much quality time with the person as possible ...be it a walk, talking, enjoying the sunshine on the deck, a funny TV show, or doing something we enjoy. I also think it would be nice to have a more serious talk and say all the nice things about each other that we both want to say and have the other person hear. I'm sorry I couldn't be of more help to you. I wish you as much peace as possible at this time in your life.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI Sept 2017-June 2018.
Radiation 5 days.

Utwo
Posts: 211
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: How can I help my family watch me die?

Postby Utwo » Wed May 16, 2018 9:33 pm

lovemyameliasky wrote:What I'm having a REALLY hard time with is how my parents and husband and sister will handle my actual dying part. I know that once I'm gone it will be terribly difficult for them (we're all such a close-knit family), but I won't be around to help them...

Is there anything I can do to make this whole dying process easier on them?

I am concerned that you feel responsible for something that is outside your control.

I can only repeat the most universal advice:
1) Change what you can change.
2) Accept what you can't change.
3) Know your limits.

Allow people who love you to provide care for you and use their own judgement.
Do not try micromanaging them.
58 yo male at diagnosis - T1bN0M0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 CT scan, blood test ...
05/2016 "prophylactic" laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan (lower body), colonoscopy OK; CEA = 1.6

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: How can I help my family watch me die?

Postby dauofcamom » Wed May 16, 2018 9:35 pm

Bless you, love. What an incredibly selfless and brave woman you are. My prayers for peace for you and all your family. You are loved.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

Lee
Posts: 5680
Joined: Sun Apr 16, 2006 4:09 pm

Re: How can I help my family watch me die?

Postby Lee » Wed May 16, 2018 10:12 pm

I am so sorry to read this, I understand where you are coming from (I read your other thread), just so sorry to read this. Did you get a 2nd opinion?

If you are with Hospice, they should have service that will help you and your family come to terms with what is about to happen.


Hugs to you and your family,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Lee
Posts: 5680
Joined: Sun Apr 16, 2006 4:09 pm

Re: How can I help my family watch me die?

Postby Lee » Wed May 16, 2018 10:24 pm

lovemyameliasky wrote:.
. . . Oh how I wish I could just pass away peacefully tonight in my sleep!!! Why can't euthanasia be a legal option? I'd so much rather take it than allow my loved ones to suffer needlessly, with no hope. I


If you are in the USA, I believe there are 3 states that support "assistant death". I believe Washington state is one of them. One state on the west coast does support this. You should be able to find out for sure on the internet.

All the best to you and your family.

Start writing letters to you daughter now, so that she will have some thing to remember you in her life.

Has someone from hospice talked to you? Have your DR.(s) used this word with you yet? Last I read they were pushing 2nd opinions at major cancer treatment centers.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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Atoq
Posts: 314
Joined: Wed Oct 25, 2017 9:31 am

Re: How can I help my family watch me die?

Postby Atoq » Thu May 17, 2018 3:11 am

You have done already a lot to make it easier for them. Is there really anything you can try to prolonge your life?
A big hug, you are a very brave and wise woman.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

stu
Posts: 849
Joined: Sat Aug 17, 2013 5:46 pm

Re: How can I help my family watch me die?

Postby stu » Thu May 17, 2018 5:41 am

I would try and find each individual a safe place to land afterwards . Either a counsellor or ask a specific close friend to be the sounding board and the helping hand to help them stand again . Your gift of your child I would imagine will force them forward .
You are special and special people leave their mark for a lifetime . Your legacy will pull them forward .
I will you peace ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: How can I help my family watch me die?

Postby boxhill » Thu May 17, 2018 7:11 am

The greatest gift you can give your family is to be with them and allow them to love you and take care of you. It is wonderful that your mother and MIL are RNs. That will make a big difference in their ability to sustain themselves and you and your husband. And hospice is a wonderful, supportive resource.

My mother and I cared for my father in home hospice for the last few weeks of his life. She was at the time 88, and she also was a former RN (as much as any RN is ever "former"). They were married for over 60 years, and were as close as a couple can be. She was at peace when he died, holding his hand. I played music for him that he loved.

My mother, who is now 95, has been a rock for me since my diagnosis. I dreaded having to call her and tell her that I was in the hospital and had been diagnosed with Stage IV cancer. Don't underestimate them. Don't worry about them. And please do not think about ending your life to "spare" them. As I said above, the greatest gift you can give them is to be with them and allow them to love you and take care of you.

You are a wonderful woman. I love the idea of writing and recording messages to your daughter.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: How can I help my family watch me die?

Postby Robino1 » Thu May 17, 2018 10:38 am

There really is no way to prepare for a loved one's passing. They have more than likely have already started the grieving process, just not within your hearing or sight. Trust that they will find their way through it.

I wish you peace and love as you travel this next step. Embrace the love from your family.

My heart breaks for you and your family. <3
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

radnyc
Posts: 299
Joined: Tue Apr 06, 2010 6:32 pm

Re: How can I help my family watch me die?

Postby radnyc » Thu May 17, 2018 12:00 pm

So sad you’re gonna through this. I’ve often thought about all these things, still do. The euthanasia option is one I’ve kept in mind, from my research Oregon would be where I’d go. Their death with dignity law is the oldest in the country. You have to be a resident there but there are ways to overcome that, just need to find a helpful doctor. May you be at peace and surrounded with love for the rest of your time.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

KimT
Posts: 600
Joined: Sat Feb 20, 2010 8:53 pm

Re: How can I help my family watch me die?

Postby KimT » Thu May 17, 2018 5:42 pm

Nothing is going to make it easier for them. Seeing a loved one suffer is still infinitely easier than not seeing them at all. My mother passed 10 months after being diagnosed with leukemia. It was a hard 10 months but we packed a lifetime of love in those months. Don’t cheat your family of a single day because each one matters. Pack in all the love you can in what time you have left. It was hard for me to see past the loss of my mother and the what if’s for quite some time. But it’s been nearly 5 years and when I think back, I just remember the good times and all the love. I took care of my mother and I considered it a privilege and an honor to do so.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

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juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: How can I help my family watch me die?

Postby juliej » Thu May 17, 2018 6:15 pm

I agree with others that you are a remarkable woman, deeply empathetic to the feelings of others, and an absolute angel for worrying about how your death will affect them!

Many, many people, when they're facing an impending loss, power down their ability to feel. "This is tough but I can't think about it now" becomes their mantra. Sometimes what they mean is that they don't want to think at all, so they become absent intellectually, emotionally, and spiritually. So how do you encourage them to stay in this place instead, with their hearts open, where there might be no future for you and the loss seems simply unthinkable? One things is certain: you won't be able to keep your distance from them. There will be layers and layers to this time, some moments better than others, everything from listening to the silly babbling of empty distractions on the television set in a neon-lit hospital room, to genuine heart-felt moments of connection that will make you all stronger and bigger than you were before.

Leave your expectations behind and ask everyone (including you) to just do their best. Sometimes doing your best might involve laughing in the face of the shitstorm you're facing, sometimes doing your best means caring way too much about the people you're leaving behind. If everyone stays right here in the moment, though, as hard as it seems, a funny thing happens. By refusing to look away, you can see past the petty distractions to what's really important in life. It doesn't work for all families, but if your family is anything like you, it can be a time of coming together rather than a pulling apart.

I don't know what it's like to die, but I do know what it's like to live as a Stage 4 cancer patient, with the Sword of Damocles hanging over my head. Somehow, by making room for the truly frightening treatments inherent to surviving this, life feels more valuable and more gratifying. I can see past the noise and trivialities surrounding me. In many ways, I am finally awake.

So here is my advice: Savor every moment of your time with them. Live loud and live joyfully and let them know what would make you the happiest. Because I guarantee you this: what will ease their pain and make this even the tiniest bit more tolerable is knowing that they are making every day of your life special. Ask for what you want: if you want to be surrounded by family and friends all the time, say so. If you want quiet time with your baby, say so. If you want to be distracted by non-cancer-related conversations, say so. Ask your mom to make your favorite dessert. Ask for hugs or prayers or whatever gives you peace.

It's excruciating to live knowing what's coming but everyone lands here at some point. Most people land here a day or two before they die. Some of us land here before our time and we get to see the world through clear eyes. Darkness and sunshine go together and no matter how f*cked up the whole situation is, the love you leave behind will be a living legacy for your baby girl, your husband, your family, and everyone who knows you.

xo,
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1


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