Facing the Future

I apologize for intruding on Stage IV territory. But, I was the primary caregiver for my mom and I was at her side when she passed at home.  That is what she wanted and I would do it again if she asked me to. 

However, it really affected my psyche and within 2 years of her passing, I had become addicted to narcotics, barbituates, opiates, anti-axiety meds and alcohol.  By June, 2005, I couldn't imagine my life anymore with the drugs and I couldn't imagine it without drugs/alcohol.  I ended up having what I would call a "nervous breakdown."  Taking care of my mom was only one contributing factor, but I don't want my kids to go through that. 

I have made it clear to them that I WANT to die ALONE.  I would rather be in a nursing home.  I have a niece and friend who work in nursing homes.  They do actually take care of the people that live there.

Everybody has their own comfort level.  I just wanted to let you know my experience from both sides of the coin.  

I hate every day that I am putting my sisters through this horrible path I am on.  I do want to be at home for as long as I can.  However, whenever it gets to the point that I don't know where I am or gets to difficult on them, I have no problem going to Hospice.  I've seen many situations where family has chosen to be there with their loved ones and insisted on not leaving them for a moment and it has not been a horrible experience for them.  I was thinking today about the boat we are all in and it occurred to me it is similar to a prisoner on death row.  We do not know exactly when our time is up but we know it is coming.  It is just some damn torturous and hard to put our of our minds.  Yeah, it's good that we get to prepare, but it is hell just waiting and not quite knowing how and when it will end.  I just feel like the more I can talk about this the more I can accept it and the less frightening this will become.  I am so grateful for this board so that we can share all of our thoughts.

Linda

((((((All my stage 4 sisters))))))))...You are always in my thoughts and the first in my prayers........Your courage and candidness are treasures I will keep within me forever......

Dream, this whole cancer world sucks, but it especially sucks when you have had news such as yours.........I say special prayers for you, dear sister......

Sorry for the intrusion, but I just could not stay silent on this......I love you all and pray for peace for us all.....

This is a sad thing to say - but in a question I saw posted on making funeral arrangements - delaying the arrangements might not be good if you are worried about money.    Usually you plan and arrange but not pay.  Savings up to 25 percent can be had but making arrangements ahead of time. Call a funeral director and ask. However -  If it is too hard -- then ignore it -- adding pressure to your life and making life harder just to save money is not worth it when quality is important -- and it should always be.

For my aunt I learned this about cost savings the hard way when I buried her.  I found that if I had made the arrangements ahead it would have been so much more affordable and we could have done more for the funeral as she deserved it --- For my mother I bought the plot next to my aunt when I purchased my aunt's and am making my mother's arrangements ahead has brain mets with a poor prognosis now.  I want it to be perfect for her and not worry that I did not have time to get her the best clothing and flowers -- and not stress out my husband or other relatives.  I know if it is time for me I will do it ahead if able. I considered doing it anyway when I do this for Mom -- and do it for my spouse and myself to make it all easier on my children. 

Maura-so sorry to hear of your Mum. I read your other post, but was at a  loss to what to advise. It sounds like a truly horrendous situation, and I hope that you're able to get as much help as posssible. You're doing a really good job of protecting your Mum-don't forget to loook after yourself too,x

This thread has taken a dark turn-as is so often the case when we are honest here, but I have to say--Hospice is professional & successful at assisting us into the next level PEACEFULLY! If that were not true they would not have such a wonderful reputation!

I have tried my best to prepare my family for my end. We have talked about almost everything I can think of. I do not think it will scar their psykes....enough said!

Dream, my friend. Who says that what they told you of HOW you may die is anymore guaranteed than the WHEN of it all>>>>?????????   Please let go of all the Possibilities they have sewn into your mind hon!

HUGS all--be well & stay strong 

I read here because I have friends here. I work for Hospice and I can attest to the fact that they are wonderful in assisting end of life. I will want their services when the time comes for me.

Nothing bad meant by the hugs Fitz.  It was NOT meant as pity.  I am only one scan away from where you all are now.....and now I feel guilty for just leaving hugs.   I don't wanna invade your safe place and this is the reason I've always been so hesitant about even posting here.  Maybe I shouldn't......sorry!

Thank-you Fitz.

As this particular forum description states, it is for: Palliative Therapy/Hospice Care: A unique forum ONLY for those trying to live well and/or trying to die well.  Certainly every stage is scary,  but the statement "I am only one scan away" really diminishes what we are going through.  You have no idea what Stage IV is like until you're there.  And I hope you never know what it's like.

Pookie -- I too always envision stopping treatment, going to live on the beach, and dying there.  I've added unlimited morphine to my dream too.  But unfortunately it most likely isn't very realistic for me either.  You've really got it together, taken control of what you can control.  I'm not as organized yet, but I've weeded out a lot of belongings and have a container of special things I want to go to my Mom.  That' helps me and I hope will help her too.  I've also organized a photo album to show what I've done, where I've been -- again for my Mom so she can see that I have had a rich life. 

I find, like others has stated, that my thoughts are on those I leave behind.  I don't think I can take care of myself, the "logistics", until I'm satisfied that I have done the best for them when I'm gone.  I hate the sadness it will cause my Mom -- that's the worst.  BTW - I don't have a husband or children so don't worry that I'm leaving them out!

Elizabeth

xoxo

I'm with ya all stage IV sistas! But I just have to ask:

Since most of us accept that you can WILL yourself to live longer & better than "they" predict, does it not follow that we can also WILL ourselves to speed up the end????  I cling to that belief! I saw my mom do it--Hospice said 3-6 weeks---she wanted to be gone & it was less than a week (I believe she was so deeply sedated it was fairly painless.)

Tho Hospice's hands are tied by what they can do legally---it is still VERY deep from the few deaths I know about. So can we try to propagate the faith that we DO have some control over the last stages??? or am I still just  the Queen of DeNile???

Hugs--be well & stay strong 

Not sure if I should post this here but just wanted to share my experience. I lost my dad just a couple of weeks ago and I am still grieving. Although he had been dx'd with inoperable colon cancer, he didn't die from it but from sudden heart attack. At one time he had been given 24 hours but he survived and continued recovering. Only a few hours after his doctor told him to start rehab and he joked around with the nurses, he departed for "up there".

Now everything has been left unsaid. None of us made it in time to say our last good bye or how much we loved him. While I am thankful that he was able to go very peacefully without suffering pain or any discomfort, I moan that we weren't given the opportunity to say how much we loved each other. So please ladies, tell your kids, your s/o or anybody you love how much you love them and make sure they tell you the same without being shy. They will regret like me if they don't. Give them as many opportunities as you can for them to say they love you. The more the better. 

My wound is still too raw that I can't look at the pictures of him straight. I really wish I could so that I wouldn't have to remember how small and weak he looked when he was tied to bed. I really want to remember him as a big strong guy because that is who he really was. I will start creating some kind of memorial book of him eventually but if he had left me that kind of stuff or video clips, I know they must have helped me and I would have treasured them so much. Even for someone like me who is not too young anymore, losing a parent is very, very hard. Seeing someone you love suffer and die is such a hard experience and a huge impact that may affect the way you will remember them. So I would encourage all of you to create something that will help your loved ones remember you the way you want to be remembered. I know it will help them a great deal. Handwritten (not typed) letters would be great too. 

I am sorry if I intruded you here. That was not what I meant to do. I just wanted to share my experience with you. I truly hope that you can share as many good memories as possible with your loved ones. My thoughts are with you all. 

Hugs,

Fumi

I am very sorry for the loss of your Dad. He knew, he knew how much you loved him.

It is the simple things, like a handwritten note as you said, that will help our loved ones when we're gone.  That we know they loved us, that it will be OK when we're gone, that we loved them so much.  That's pretty well what it comes down to -- that we say yes, our relationship is and was cherished.

Thank-you Fumi.  You are very kind to reach out during your time of mourning.  I'm sure you will get healing and eventually joy with the memorial book of your Dad.

Elizabeth

xox

Edited to add:  I had started gathering photos etc for a sort of memorial book for my Mom, I've let it slide.  Thank-you for inspiring me to work on it some more.  You've done a good thing posting here.  Thank-you.

Dearest Timtam

 Have not been on the Site in a while I just checked in and saw your post.  We communicated in the past re my special needs daughter Sarah who has BC (she is very well by the way).

I am so sorry that you lost your father and you are feeling a big hole in your heart.  I lost my father when I was 14yrs old.  He had a sudden heart attack.  Sadly I lost my mum when I was 12 years old she had a tumour on the brain.  You will never stop missing your dad but time will heal even if it doesn`t feel like that now.  The pain will lessen and the happier memories of your dad and the happier mental pictures will surface.  Don`t think of all the things left unsaid  I am sure he knew you loved him and took that with him.  Let the love he stored in you become a comfort in the coming years.

God bless Katz and Sarah