Hospice care

[loveher]

Hi everybody,
I don't want to be depressing, I dont want any of you brave warriors to stop being optimistic. I just need to make sense of my thoughts.

My mom's had an epic 10 year battle with this disease and she's been so strong and amazing through all of it. however, her condition has been rapidly declining since april. She had inumberable brain mets and after a second wave of whole brain radiation and targeted cyberknife treatments the brain mets have not responded. The degree of her systemetic disease is also extensive.

The second WBR was really damaging. she is no longer able to carry on a conversation has very poor memory. This hit me particularly hard. I feel so alone without having her to talk to everyday.

I know my mom would want to fight to the end, i know how strong her will power is. but to keep going seems like pure torture. she lies in the hospital 24 hours a day, she does not have to ability to walk anymore, she needs to be fed and bathed.

My dad asked me if i thought it was time for hospice care and i told him i would never be able to make that decision and i told him he and my aunt should make that decision.
Today he called me and said that they deceided to end treatment.

How could this happen to my amazing kindhearted mother. How can someone fight this hard for so many years and use every ounce of energy and still wind up like this.

I know it would likely be pointless to keep treating her, but im having a hard time accepting hospice care.
What do you guys think?

thanks for letting me vent,
Sue

[Mary Jo]

First off let me say that I am so sorry this is happening to you and I can only image how difficult it must be.

That being said, it sounds as if your mom has been quite the fighter and she's given it her all. Unfortunately, the cancer has progrossed and from what you have shared it sounds as if your mom is pretty much non-responsive and has reached the end of her struggle. That must be so hard to accept but I feel confident in saying that I think if your mom could make the decision she would ask you to let her go and to be at peace.

Sending you and your family prayers for God's guidance and wisdom.

Love and hugs...

Mary Jo

[Chelee]

Dear Sue, I went through the same thing with my Mother a tad over 2 yrs ago. My Mother had advanced lung cancer. She only got to fight a touch over a year...but she went through so much in that short time.

Like your Mom...I noticed my Mom really went down hill after WBR. She didn't want to eat much after that...her mind was never the same. She'd lay there while I sat with her. She couldn't get up by herself to use the bathroom without help. Couldn't even feed herself. She went from this big strong woman down to about 100 lbs and looked so frail in that one year...it just about killed me to watch her. She was my Mother and my best friend in the world. Just thinking of it now and what your going through brings tears to my eyes. I can certainly sympathize with you in a very big way.

I know what a difficult decision it is to bring in hospice. I know personally for me I waited far too long. I didn't want to let my Mother go...but I was in denial...she was gone already in a sense. She got to where she couldn't eat anything or even sip water. I knew in my heart if my Mother would of had a say in her own situation...she would of wanted me to let her go. There were no miracles left for her.

It sounds like you & your family all agree it's time to let her go. Your Mother was a fighter...she battled 10 long yrs & I agree with you that it would be pointless to go on at this point. But this is such a personal decision & never an easy one by any means. Since you were so close to your Mom...just ask yourself what she would want at this point...I think you know that answer. My heart goes out to you...I wish I was there to give you a big hug. I'll be keeping you in my thoughts & prayers. God bless you & your family.

Chelee

[BonnieR]

You asked what we think. Well, I think you have been an amazing daughter to your dear mother. And you only want what is best for her. Maybe it would help you come to some resolution and peace of mind by having a talk with the hospice staff.
Keep the faith.

eta: Dad must be having a hard time too......

Hi Sue;

I too was in the same place you are now. My Mom had lymphoma that spread to her brain. My sister's and I did not want to let her go. Thanks in a large part to my one sister who explained to the rest of us that it was a quality of life issue, we called in hospice. they were great!!! We brought my mom home and they arranged for a hospital bed, oxygen, and medication. My Mom was able to pass away in her home surrounded by her family. They gave us so much support, both mentality and spirituality. Don't wait to long to call them in, you will be amazed how caring they are. It truly takes special people to work for hospice. I will always be grateful to the people at hospice. My prayers are with your Mom and your family


Take Care;
Eileen

[Mary Anne in TX]

I think your mom handed off that fighting spirit to her daughter! You are both amazing. Prayers and love, ma

[Lien]

Dear Sue,

This is so hard. You have to make the transition from fighting with everything you've got to letting her go. You've been fighting by her side for so long, that it's almost unimaginable that you would stop. But I think your Mom may need your help with the next step.

When my mother was nearing the end of her cancer of the esophagus, she took my hand and said: you have to let me go now. You belong to life, I have to move on. I need for you to let me go.

What do you think your Mom would want you to do? How can you help her now? I know that letting my Mom go made her passing easier. I am glad she went in peace.

Wishing you wisdom, strength and hugging you from the other side of the ocean,

Jacqueline

[Joan M]

Sue,

Your mom has the spirit to fight but her body is just too exhausted to continue. She has been fighting a great battle. And it's difficult for you and your family to think that the battle is lost, especially after 10 years. Acceptance is hard.

Facing a loss of someone close is very difficult. My sister who lived in New Jersey succumbed to multiple sclerosis in 2000. She was only 51 and had MS since she was 17. She was five years older than I.

Rather than a wonderful daughter like you, she had two wonderful sons who did a lot to take care of her, and they were young in their 20s. I know it's been rough on you being at school, and it was rough on my nephews also.

Sending you and your family hugs,

Joan

[suzan w]

My prayers and thoughts are with you and your family at this difficult time. My dear friend, Joanna, died in 2005, after a 7 year uphill battle with breast cancer. It had spread well into her chest wall by the time she was dx'd. She was 40 when she died and had been told earlier that she was 'too young for breast cancer' and her insurance would not pay for a mammogram. Those 7 years were not pleasant ones and we all rallied round. Hospice was the gift we gave her and ourselves and looking back, probably should have made the decision sooner. 4 months after Joanna died, I was diagnosed with breast cancer. Stage 1...I feel like she has been my 'spiritual support' and it is almost like she is not really gone. It is hard to explain, I feel that when we are extremely close to someone, and they die, their spirit remains with us somehow and gets us through tough times. You will make the right decision, trust yourself. XO Suzan

[Believe51]

Oh Sweetheart, I came here to empty my mailbox and never have the willpower not to see what is happening.

I am telling you from my heart, call hospice. Mom needs to be comfortable during this next part of this journey. This will be the hardest call you ever have to make. Do not wait, please.

I love you and have followed Mom's struggle for so long. I am so sorry for you, for me, for us. This &%#$ing disease stinks!!!>>Believe51

[tricia keegan]

I agree, and echo what everyone has said already, your Mom would want hospice at this point I would think.
I just lost a friend who has been battling for twelve years, more on than off treatments. She finally went into the hospice a week ago and passed yesterday. As someone already said, she still had an amazing will to fight but sadly her body was worn out and all the previous years of treatement had taken their toll.
I know she's free from pain and gain comfort from that, I hope you do too and will be thinking of you all

[Ruth]

Dear Sue:
You are such an amazing daughter and you know the right path to take. I think you will be thankful when hospice comes in. They will help you in more ways that are imagined. The hardest part is letting go of someone you love even when you know it is for the best. Surround her in love and she will be at peace.
My heart goes out to you.
Ruth

[SoCalGal]

Hi Sue,
Sending a hug. A really big one from my heart to yours. Love, Flori

[loveher]

I wanted to say thanks. Thanks Chelee for for sharing your story. It helps me put things into prospective hearing from you wise gals
Mom is home now, I do think that hospice care was the right thing to do. I think whats important now is that she's as comfortable as possible.
I'm feeling much calmer. I've spent so many years researching drugs and worrying about scan results and tumor markers, now i feel like i can stop and rest.

[loveher]

and it's good to hear from you again Flori!

[juanita]

just sending lots of hugs and prayers to you!

[Believe51]

Checking on you and glad we both have that phone call over with. Let us hold one another as we enter this part of our journey at the same time. I am so glad we called and that these people we love so much can be coddled as the move forward in this hell ride. I love you Sue. I am so sorry we have to watch this, but our Sweeties will die with the dignity and grace they both deserve. I have not stopped crying for days now, just moments of dryness but I know this is right. I am hugging you right now!!>>Marie

PS: He just told me a matter of days, I feel like my stomach turned upsided-down...(more tears)

[Jackie07]

Sue (and Marie),

As a person who had watched a loved-one (my Mother-in-law) undergoing hospice care, I understand it is tough to make that decision. I hope the assistance from the Hospice care will allow you some needed rest and time to mourn your loss (yes, the mourning started already.)