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Hospice

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

This is a heart wrenching post for me to write.

Over the weekend, my sister had some more excrutiating pain in her back. She went back to the hospital where they had to re-stent her kidneys and liver. New tumors had grown blocking the stents. She was able to receive much needed pain relief from the surgery. However, it was evident that she was not going to handle any more treatment options, even clincial trials.

The decision to call in hospice was not an easy one. Ultimately, it was her decision to be released from the hospital. She is now at home resting. She will receive pain management from hospice so she is not suffering any more. I will say she was not ready or prepared to hear those words. It has been a heart wrenching time for our family.

Thank you to everyone here on this board for all of their words of encouragement, advice and support. I know I will continue to visit this board and hope I can help others on this journey.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm so sorry to hear this news. Your sister is so very young. Praying for her and the whole family. I am glad to hear she's not in pain....

I've forgotten the ages of her children. Are they old enough to understand?

Praying right now and will continue to pray for you all.

Diane

Devasted
Posts: 186
Joined: Jun 2009

I am so sorry, thinking of you and your family.

AnneCan
Posts: 3692
Joined: Oct 2009

Marie,

My heart goes out to you, your sister + your family. This must have been a terribly difficult decision for your sister to make. I am glad that her pain will be managed. Please know you, your sister + family are in my thoughts. Thank-you for letting us know.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

This is just devastating, the pain you are also going through, watching her, and you really are a wonderful caregiver. I know how hard that decision is going to be once it's my time, but I know that my body can only take so much as well, and I'll hope to know the signs of when my time comes, I am so sorry you are going through this. My hope is still with her, and so glad she is out of pain. Please let her know and your family, she will be in my thoughts and prayers, and hope for a miracle is always in my heart.

Hugsss!
~Donna

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Oh Marie I am so sorry. Your sister and her family will remain in my prayers and thoughts.

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

Marie:

I've followed your posts about your sister's journey with hope and concern, wishing that she and her family would beat this disease. Please know that you are all in my thoughts and I hope that your sister is able to rest comfortably in the company of her family and friends.

You have been kind in posting information for me and my husband as we fight his disease, a kindness for which I am forever grateful.

Your sister is lucky indeed to have such a loving and concerned sister like you. You have fought so hard and with such constancy for her health. I hope you find peace in knowing that you have fought such a determined fight for someone you love.

Hatshepsut

crazylady
Posts: 544
Joined: Jun 2004

Marie,

I'm so sorry to hear this news about your sister. I was hoping that she would be able to find a treatment that would work for her.

Jamie

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

Dear One,

I am so sorry that things have progressed so fast. We never have enough time with those we love. I am praying for you all. Your sister is most blessed to have the support you and the rest of her precious family have given. I pray for peace and comfort for you all.

Blessings and Big Hugs,

Debbie

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

So sorry for this news. I was hoping things would turn around for her. My thoughts are with your sis and your family. Love Paula

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Marie,
You have been such a wonderful advocate for your sister, I know this is very hard for you and your entire family. I pray that your sister can have some pain free days to enjoy her family. You will all be in my prayers in the days ahead. I am so sorry.

Aloha,
Kathleen

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Your sister and your entire family are in my thoughts and prayers.

-Sheri

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

I am so sorry that it has come to this. I was so hoping for something to help her. Now that the hospice decision has been made may you and your entire family feel some peace knowing that you did everything humanly possible to beat this cancer. May her days ahead be pain free and comfortable.

I am at a loss for words right now. I was so hoping for something, you and your family are forever in my daily thoughts .........

Take care - Tina

krf's picture
krf
Posts: 99
Joined: Dec 2009

I am so sorry Marie. Please know that ROger and I will be thinking about you and sending love and peace your way.

Kim

mom_2_3
Posts: 965
Joined: Nov 2008

Marie,

I am so sorry to hear of your sister's challenges. She has been unbelievably brave in the face of this battle and you have been with her every step of the way. As you are lucky to have such a good sister, she is blessed to have you in return. When I have thought of my children's life without me, one thing that has given me some comfort is knowing that I could always count on my sister to be a loving presence in their lives and to be a reminder of the mom that loved them so much. Assure your sister how you will always remind her children about what a brave, intelligent, strong and loving person gave birth to them.

Marie, I am crying as I write this, for I was so hoping (as I hope for everyone here) that the story had taken a happier road. I send you and your entire family prayers.

Amy

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thank you for your beautiful messages and continued prayers during this time. My sister has three beautiful children; 4, 6 and 8. They are the joy of her life.
Does anyone have experience dealing with Hospice? I have some questions about denial.
Take care and keep fighting. I am cheering for all of you here.

Jaylo969
Posts: 827
Joined: Jan 2010

I am so sorry and sad to hear this news.You have been such a good sister...you remind me of my Sis.

I an not a hospice nurse but I have worked with hospice patients and families over the years. As a matter of fact, I was my own Father's hospice caregiver prior to my surgery.
( and since he is still on Hospice I plan to go back as soon as possible)

Denial is usually the first response.Then anger, grief, acceptance. ( I might have missed one emotion) Talk to your hospice nurse, your assigned social worker, or chaplain. I find that the nurses are most forthcoming.

Blessings to you, your sister, and family.

-Pat

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Marie,

I'm saddened to hear this but, at the same time, was glad your sister was able to get some pain relief. I will keep you, her, and of course her family in my thoughts and prayers.

Hugs to you,
Lisa

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Marie, I'm so sorry about this. You have been such a kind and considerate sister, and I know it hurts your heart so much. I'm very glad your sister is able to have her pain under control.

I'll be praying for your family as you go through this transition.

*hugs*
Gail

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I am so sorry about your sister,this is a hard time for your family.I will pray for all of you.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I am so sorry to hear about your sister.

May you have the courage, the wisdom, and the grace to see you through the difficult days ahead. Know that you are not alone Marie and that you can connect here at anytime for support.

Peace and blessings... Rob; in Vancouver

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm so sorry, Marie

Your sister has truly fought a hard battle and been through so much - and you've done a wonderful job in taking care of her and have been such a good sister.

I know all of us have followed you and your story up-close and it is heartbreaking to hear such news. I know we all hoped for a turn around or a breakthrough.

I'm glad that they have her pain under control and she is resting comfortably. You''ve been a beacon of hope out there and a remarkable caregiver and I'm glad to have gotten to know you. You are so wonderfully supportive to everyone here on the board.

I wish I knew of something more to say to you right now. Just know that we all care about you and your sister - and we are so very sorry to hear this news.

-Craig

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I continue to be touched by everyone on this board. Blessings to you all.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I am very saddened by this news...My hopes are for sister, you and the family to be able to find comfort during this time and many blessings to you all......Love to you and yours, Clift

eric38's picture
eric38
Posts: 588
Joined: May 2009

God bless you and your sister.

Eric

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Marie,

I am with you in prayer.

Lizzy

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

I am so sorry to hear the news of someone so young and full of life! I just don't understand why someone like your sister has such a progressive disease while others live for years with stage IV. I"ve been in the fight for 3.5 years. I believe the best thing to do is just to trust God and know that there is more to life than just here on earth. God bless you and your sister and know that she is in my prayers. JIll

amyb15's picture
amyb15
Posts: 109
Joined: Jun 2009

Marie:
I have been wathcing the board and waiting for you to update about your sister. I am very sorry to hear all that has happened. I was so hoping for some good news. YOu have been a great advocate for your sister through her battle with cancer. You will always know that you did everthing possible to help her. Know that we are all here for you.

Amy

John23's picture
John23
Posts: 2140
Joined: Jan 2007

You didn't mention seeing another surgeon or specialist for
another opinion (or three), but it's never too late to do that.

The hospital staff councilor handed me hospice forms to fill
out the day after I was moved from ICU to the "step-down".
That was over three years ago. I'm not sure if she still has the
forms stuffed where I told her to stuff them, since I haven't seen
her since that day.

There are always other things to try..... Sometimes radical,
and sometimes unorthodox. I wish I had a magic wand, but
all I have is a keyboard.....

My best hopes and wishes to you all.

John

thready's picture
thready
Posts: 475
Joined: Sep 2009

Marie,
I am so sorry about your sister, I will keep her, you and your families in my prayers. There is a bit of comfort knowing she is at home and that she is getting help with the pain,but this is so very hard.
Again I am so very sorry.

Jan

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I'm so sorry to hear this news. You are a great advocate for your sister and through you I've come to know her. May you all have peace and tenderness during this difficult time.

all the best, Leslie

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

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