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How can I help my family watch me die?

Posted: Wed May 16, 2018 5:57 pm
by lovemyameliasky
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.

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

Posted: Wed May 16, 2018 6:41 pm
by crazylife
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!

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

Posted: Wed May 16, 2018 8:19 pm
by child#6
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.

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

Posted: Wed May 16, 2018 9:21 pm
by Canada777
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.

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

Posted: Wed May 16, 2018 9:33 pm
by Utwo
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.

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

Posted: Wed May 16, 2018 9:35 pm
by dauofcamom
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.

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

Posted: Wed May 16, 2018 10:12 pm
by Lee
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

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

Posted: Wed May 16, 2018 10:24 pm
by Lee
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

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

Posted: Thu May 17, 2018 3:11 am
by Atoq
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

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

Posted: Thu May 17, 2018 5:41 am
by stu
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

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

Posted: Thu May 17, 2018 7:11 am
by boxhill
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.

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

Posted: Thu May 17, 2018 10:38 am
by Robino1
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

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

Posted: Thu May 17, 2018 12:00 pm
by radnyc
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.

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

Posted: Thu May 17, 2018 5:42 pm
by KimT
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.

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

Posted: Thu May 17, 2018 6:15 pm
by juliej
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