Topic: how do you know its the end?

hi there. my name is susan. my mom has just started her 3rd year of battling with cc. i'm thankful for all the time i've been given so far - maybe not thankful enough. its been a struggle til now. but we had always managed to stay strong and keep our spirits high. however, things have started to take a turn for the worse.

about 2 months ago, our surgeon came out of the o.r. telling me that after performing a laparascopy, he couldn't go on with the resection as planned. apparently, too much of her liver had been overtaken by the disease. no surprise. the resection was more of a desperate last ditch effort after all the chemo medleys they could find stopped responding.
a few days after, my mother exhibited signs of ascites. since then, she been going in every week to get drained.
now about 1 month ago, after understanding that chemo and surgery were ruled out, she declared - bring on the radiation. she refused to go without a fight to the end. she underwent sirt-y90 treatment. i was hopeful, optimistic even - especially after reading about all the good results several people had on this forum. but things haven't turned out so well for my mother. she's now completely lost her appetite. constantly vomitting and in a greater degree of pain. oh yes, and she is still getting drained every week.
and every week, she has been slowly disappearing. she's so small now. my god, everyday i look at her, i feel as though i'm facing a stranger. i can't believe this is my mother. more of her fades everyday, physically and mentally. i'm left constantly guessing how much is going to be left of her the next week. i sit there, afraid of letting go of her hand, should she forget, lose her will, and begin to let go of herself.
at first, i thought this turn for the worse was brought on by the sirt-y90. i thought if we ride it out, things will get better. but now that she barely even has the strength to smile, i know its not. i know its the disease. its the age. its the pain. its taking her away from here. she's dying.
we don't have much time, do we?

Re: how do you know its the end?

Dear Susan,
I feel so terrible for you and your mother and what you are going through. I don't have all the answers, but sometimes it's better to face the harsh reality and if your gut is telling you that your mother is leaving, then you may be right. PLEASE don't let me take away any hope you may have - it's just that I'm a realist and I dealt with the same thing with my mother. Your mother has fought so hard and done so many things to combat this disease and she's an admirable and strong woman. She may still come through this!

The most important thing is that you're by her side and she feels your love and comfort. I know you're doing everything to make her comfortable and she loves you for it.  I hope she rebounds from this, but in either case, I can sympathize with all you're going through. The strongest person in your life is suddenly left weak and helpless and there's nothing you can do. It's too heartbreaking.

Unfortunately, there's no way to tell how the end comes, or when -- everyone with this disease seems to respond differently. My mother had the ascites, but the most telling sign, I think, is the mental withdrawal. I think people know when they are going, and they start to detach themselves from this corporeal world. That's just my opinion but I'm stating it so you don't let anything be left unsaid, tell her how much you love her now - and often - so you don't have any regrets later.

Hoping for the best for you and your mother,

Joyce

3 (edited by breathing Sun, 27 Apr 2008 00:30:11)

Re: how do you know its the end?

thank you so much for your response. i've been pretty much caring for my mother on my own, and honestly, i don't know what i'm doing. i'm just trying my best. seeing your response and being able to read everyone's experience helps so much. i had so many questions and reading this board since it began has helped answer so many of them.
right now i'm thinking of hospice care. i emailed my mother's doctors about it, but haven't heard back from them. problem is, i'm reluctant since i feel that my mom would prefer to be at home. but its so much for me by myself. my latest dilemma has been trying to figure out how i'll get my mom to pee when she loses the strength to sit - we're getting there - she hugs/leans on me to keep herself up. would a few hours a day from a visiting nurse suffice? what does she need? what more can i give?

Re: how do you know its the end?

Hi Susan,
So sorry to hear what's going on for you.
I don't know if you have similar stuff in US, but here you can get Macmillan Cancer nurses to help out at home. Is there something similar for you I wonder?
Hospice seems such a big decision to make, but having been there myself, it was such a relief, because I know I couldn't have given my Mum the level of care that was available there. I spent a lot of time there in her final week (she was only in there 10 days before she died), and the practical stuff you speak of (like going to the toilet) was quite hard as she too was weak, but I could always call for help if I needed it, which was such a blessing.
It is so hard to know what to do. I really wanted my Mum to be at home here with me and my family, but realistically, she needed more care than I could give.
Have you spoken to your Mum about it? How does she feel about going into a hospice?
I would say that a visiting nurse would be a good place to start, because they will be able to assess her needs and advise you.
Oh love, sorry you are having a hard time, and hope that you will be able to get some help, as it is a lot to be doing alone. It seems like a hard decision to make, because no doubt you really feel that you would like to do all you can for as long as possible. But extra help will give you a bit of a break, which I think you will really appreciate. I remember just feeling so grateful that the burden was not all on my shoulders. It's hard to pass on some of the burden, as it make you feel like you aren't "doing enough", but as a carer, you need to have break from it all sometimes, even if it's just an hour, as it makes it so much easier to do what you are able to do/want to do, witthout so much pressure. Hope that makes sense.
Take care, and look after yourself.
Much love X

Re: how do you know its the end?

You mentioned hospice and I think that would be a great idea at this time.  If you find a good hospice provider, they can help in so many ways and your mother can stay at home!  My wife's hospice team included social workers, nurses, doctors, and home health aides and they were fantastic.  They were so compassionate and also very talented.   And, by the way, if your mother starts to improve they can always take her "off" hospice status.

Best of luck to you and your mother.

Re: how do you know its the end?

Hi Susan,
So sorry to hear of your problems with your Mom.  I am a nurse and taking care of my husband Joe who just had a week in the hospital with internal bleeding and infection,.  We came home yesterday and now I think he has ascites.  They didn't tell us that in the hospital but I think I am right.  He was 68 yesterday and has had a great life but I don't  think we are ever ready to say good bye.  I will pray for you that you will have the wisdom to make the right decisions.  I will definitely get hospice when the time comes because I have seen the good they do.  they can do hospice at home and some hae facilities you can go to.  Best of luck.  god Bless  mary Anne

Re: how do you know its the end?

unfortunately, my mom passed away just a few short hours after my last post. i called so many of my relatives that night cause i needed help, but everyone was fast asleep and didn:t hear their calls. i called hospices, and they all told me to call back in the morning. so i stayed by my mom:s side while she was racked with pain and finally passed. i had no idea it would be so soon.
though you are all strangers, i feel like you have all been by my mom:s side. thank you for all your support.

Re: how do you know its the end?

I am so so sorry for the loss of your mother, but I'm glad that you were by her side and she didn't die alone. You did a wonderful job taking care of her. She sounds like an exceptional woman and I hope her spirit helps you get through this.
Joyce

Re: how do you know its the end?

Dear Susan,

So sorry to hear of your loss.  Your Mom was fortunate to have such a loving daughter by her side until the end.  Prayers for you to get you through the grieving process. 
Karen

Wishing all God's blessings!

Re: how do you know its the end?

Susan,

I am sorry to hear about your wonderful mom.

celoi (Charlene Eloi) Daughter of David Cook

Re: how do you know its the end?

Susan - I am sorry to hear of your loss.  Although we are all strangers, it is comforting to know that others are experiencing the same thing and we are not alone.  I will keep you and your family in my thoughts. - Colleen

Re: how do you know its the end?

Susan... My deepest sympathy and prayer of support coming your way.  Remember you did all you possibally could.  Caring.loving and supporting, you can't ask for anything more.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: how do you know its the end?

Susan, my deepest sympathies for you and your family.  God bless you all in this time of loss.

Re: how do you know its the end?

Susan-so sorry about your Mom.  I hope your memories can eventually bring you joy and peace.
Patrice

Re: how do you know its the end?

Susan -- So very sorry to hear about your Mom. You were such a supportive and loving daughter and she knew that right to the end. You were there for her and, speaking from experience, it will be a comfort to you always, knowing that you did everything that was humanly possible to show your love in her final moments. God Bless you and give you strength through your grief. Love,  Jean