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hospice decision. . .toughest one yet . . .are there any good answers?

Iowahawkfans
Posts: 12
Joined: Oct 2011

Hello -

I am relatively new to the boards. My mom has been battling cancer for the last 15 months. On November 14th we admitted her into hospice care in her home. He goal at that time was to make it to Christmas. Her oncologist said she probably had three months before passing so we thought this would be a very doable goal for mom.

Mom has been transitioning faster than Hospice expected so they called me yesterday and asked me the question. Do we want mom to live to Christmas or do we let her go more on her own time?

A little bit more on mom's diagnoses. August 2010 she had a colonoscopy and they found a tumor in her right ascending colon. The very same day, they found two tumors in her right breast. In August she had a right hemi-colotecomy and in September she had a masectomy of her right breast. Her breast cancer was worse so we treated that with chemotherapy (CAT regime) and radiation. She survived the treatment (barely) and we thought we were on the road to recovery. then in July she started to lose blood again so they moved up her 1 year check up on her colon. During that colonoscopy, they found a huge 11cm tumor so exactly 51 weeks after her first colon surgery, she had a left hemi-colocetomy. This one was bad!!!! It had gone through her colon wall and unfortunately we found out in September that it had spread throughout her abdominal cavity. There was no cureable option for her. She was already weak, and they would only give her 5FU and lucovorian as treatment and that only lasted for 5 weeks before having to stop treatment due to her weak state. Now, she is sleeping about 22 hours a day and when she is not, she is in pain. We try to control her pain but the cancer is putting pressure on so many organs it is hard to know what to do. When she does eat, many times she gets violently ill. They assume she has either an ileus or actual obstruction but hospice doesn't do diagnostic testing to know one way or the other.

She is now not eating or drinking enough to keep herself alive. Hospice is giving her fluids but it is barely enough to prolong her life. They want mom and I to decide if this is what she wants so she can make it to her Christmas goal, or do we let nature take its course and let her go earlier. hospice can't keep giving her fluids forever. What is better, for her to pass right after Christmas or sooner? Mom has fought such a valliant fight for so long. She is tired of this battle but her spirit is strong. She just doesn't want to leave her children. we don't want her to go either!!! But i can't ask her to suffer anymore. I just can't be that selfish.

I am in no state to make this decision and I honestly feel that my mom needs to be the one who decides. I just never thought it would come down to this. Life seems so unfair. anyone esle been given a decision like this one? What did you do?

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Hello and sorry you're here. My mother has been fighting for 3 years and now we have hospice. Just last night my brothers and I were going over her health care directive and there is no doubt as to what everyone (including mom) would want in your mother's situation, which is to let her go. No hesitation, it's what we would do.

No matter what you decide, you may not be in control of it anyway. As the hospice chaplain said, we are all in God's waiting room, don't know when you'll be called.

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

But I know there is a very good chance I will be facing it. I hope that I have the strength to let him know that he is free to go, that when the pain is more than he should have to bear, that he should not hang on for me, the kids or anyone else. I believe it is important to talk about this and let him know that it is his decision and that I will be OK somehow. That he doesn't have to hang on for me.

Of course, it's easy for me to say this now. We haven't reached that point yet, but I will pray every day that God gives me the strengh to do it.

Love you Mom every minute, hold her tight and let her know that you will be OK somehow. Let her make the call.

hugs to you both.
Deb

womack1424
Posts: 38
Joined: May 2011

Let her go, hospice should not even be giving her fluids. The body has a dying process and it knows to stop eating and drinking. Really what kind of goal is Christmas she may be comatose and not even know she is alive, is that what she would want. If it is her time it is her time, make your peace and let go.

Noellesmom
Posts: 1317
Joined: Aug 2010

Letting your mom go in her own time is best.

My mom, heck, even I would not be happy with the thought of potentially dying on Christmas Eve or Christmas Day. Not the kind of memory or thoughts I would want my family to have about Christmas.

And, I agree. That hospice or the nursing home is sort of playing God disturbs me. I know life can be prolonged but to get your hopes up that your mom might make it that long is stepping outside their bounds, in my very humble opinion.

Your mom's body may make up its mind for all of you.

Hugs to you, either way it goes. Just bunches of hugs. We lost my mother-in-law just before Christmas a few years ago. It was not an easy thing.

Kathryn Struck
Posts: 1
Joined: Feb 2012

Letting a loved one go near to a holiday like Christmas can create some fears that all Christmasses to come will have the sad memories, and that the holiday will be forever be saddened by thoughts of the departed loved one. Especially for children. A peaceful death on or around Christmas day can actually add to the closeness that the family is feeling. This is true, if you can accept that. More people will be able to visit the dying person, thus adding his/her comfort (hopefully). The day may make it possible for the person to make a small rally and enjoy some energy and vitality that will soon wane.

I would rather remember Christmas as a time when My mom passed peacefully rather than remember it as a time we were all anxiously hoping she'd make it through the holidays. And as others have said, people really do pick the time they want to make an exit. It will turn out okay no matter when her time to die has come, if the family can just not worry about the date on the calendar. Good luck and God bless.

JackieA
Posts: 150
Joined: Mar 2011

Last year, Iowa, my siblings and I were in you exact same shoes. However, hospice did not take that approach with us...but they did tell us fluids prolonged life. In my mother's case she was in severe pain. She had colon cancer. She stopped eating, and did not have a bowel movement for about 6 weeks or more. Yes. She tried. One of the things that I read was that they lose all their strength and stop using the potty. My mom used the potty until the day she died. It was hard because hospice tried to pinpoint the day she would die. Although we were given, "ten days" followed by another "ten days" then about 3 days. Well, they did pinpoint the hours and everything else. It was so hard but I can tell you some things to expect but everyone is different. Mom suffered, but the talks and times we had were priceless during her dying days. It is just unexplainable. I will tell you to let her die naturally. I could not wrap my mind around how the fluids will keep her alive...I still don't understand, but from experience, let her die naturally. The more fluids, the more pain. There is a euphoric feeling I have read about that they experience without the fluids. You may think they are in pain...but my mom was..I don't know why so they pumped her with morphine and drugs to keep her calm. God bless you. I am praying for you right now. God give you strength and peace through this time. Count it blessed because a lot of people do not get to be around their love ones when they are dying.

((((hugs)))) for you and your mom and family.

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hello Iowa and family, Welcome to the caregivers discussion board. I was a caregiver for my dad. He passed from esophageal cancer with mets to the liver in March 2010. Honestly....I have been down this road, if I knew then what I know now....after all my father went through in 16 months...I would not have continued his treatments to prolong his life. He was a stage IV, not a candidate for surgery. He suffered tremendously, and had no quality of life his last 3 months. Does this sound familiar? You know when enough is enough. I am actually surprised that Hospice is continuing to give her fluids. You do need to let her go. Go to Heaven, a place with no cancer, no pain, no suffering. There does come a time in this journey with cancer to stop. Praying that God will give you the peace and strength to make the final decision. keep us posted.
Tina in Va

angela.barnes38
Posts: 15
Joined: Jan 2012

I am so sorry to hear what your mom had to go through. It is so hard, isn’t it? It doesn’t seem fair when all of you, especially your mom have fought such a valiant fight. It doesn’t seem fair to have to have to let her go. We had home hospice care for my mom. The caregivers were such wonderful people and took care of my mom so well. I shall never forget their kindness.

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