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Refusing help

MelbaB
Posts: 2
Joined: Jun 2011

Good Afternoon. This has been a rough few weeks for me and my husband. My mother-in-law has been diagnosed with Stage IV colon cancer. Her colonoscopy showed a large mass in her colon that is cancerous. Then her CT scan showed the cancer had spread to her liver and left lung. She is receiving radiation and light chemo (portable fanny pack) for two more weeks. Then she will begin her heavy chemo. No surgery has been planned.
She is still working, but has lost 25 pounds (ending weight 145lbs) and is beginning to feel the affects of the radiation, nausea and stomach cramps. She has no appetite, so she basically refuses to eat. She is down to Ensure, rice and some chicken. The doctors told her if she loses anymore weight, they will have to admit her to the hospital. But she doesn't seem to believe them.
Besides the cancer, the biggest problem we're having is her inability to accept what is happening to her. I know that it is beyond scary for her (I lost my father to cancer when I was younger). But she is refusing to get a second opinion and is refusing our help. She tells us that she's fine. This is beyond frustrating to my husband and I because we want to be sure she is receiving the best care. But she simply refuses to fight for it. I'm not sure what else to do, except to just be there for her and hope she calls us.
If anyone has any advice, please share. I am willing to try just about anything. Thank you.

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

I am dealing with similar symptoms with my father. It is really hard to fight over the patient not helping themselves, but they won't admit they are doing themselves a disservice. It's rough and I got my dad an appt for tomorrow. I hope Dr will hit the point home with him, but my dad seems to have good advice go in, make sense, then fall out the other ear. I hope your mother in law will come to terms a little better. It's so hard to watch. My dad's home health nurse and therapists have already told him to listen to his bossy daughter (me) about eating and drinking, and for me not to be passive about his refusals as they have seen too many caretakers let it slide to the patient's detriment. Best of luck to you and your husband!

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Perhaps this is her way of "fighting it" in that she is trying to maintain a "normal" life for as long as possible.

It can be very frustrating to think that she might be missing out on better treatments if she doesn't shop around; you seem to think that she is currently not getting the "best care" and she would do better with another doctor or hospital. But, if she is absolutely certain that another doctor will not change the outcome, I can see why she might not want to spend her remaining quality months shopping around.

How do you say, "we don't want to lose you any sooner than we have to and we wish you'd look into other doctors/treatments/hospitals, but we also understand that you might have chosen this particular path because you think it will provide quality over quantity - we wish you'd reconsider, but we'll support your decision either way?"

Maybe just that - get the ball rolling and ask her if she is figuring that the disease is terminal and she'd rather not waste time trying to get extra days out of it. Maybe you'll discover she really is in denial and can try to address that, but maybe she will come right out and say, "yes, that is what I want." If so, would you want to support her or fight her?

In the end, it is only a decision she can make, but I hope you folks get to a point where you feel that she has made it consciously and carefully.

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

Hi Melba and welcome. I've been caring for my mother for over two years. Last week when I arrived to put on my full time caregiver hat, I called my sister-in-law who had been looking after things in my absence. One of the first things she said was that Mom had been enjoying her independence, which was just what I needed to hear. Mom's prognosis has entered the dark zone, with no promising treatment options, but by golly she still has her independence.

With mets to liver and lung and treatment thats about to kill her, I can understand why your mother-in-law wants to give it up. Allow that. Without relying on words, do everything you can to preserve her independence. If she wants to work, do what you can to take care of her house, laundry, mundane stuff so she can put her limited energy where she wants to. There are many ideas in back threads for "super shakes" that pack lots of calories into yummy things to drink.

Many terminally ill people stay in denial most of the time, and slip into reality only as much as required of them, then the veil of denial comes back up. Allow that, too. You and your husband can and must handle the truth, but your mother-in-law does not. Hang in there and good luck!

MelbaB
Posts: 2
Joined: Jun 2011

Thank you so much for the feedback and ideas. It is very comforting to know that we are not alone in this. My husband and I have talked it over again and are accepting that it is her life and we have to respect her wishes, even if we don't agree. We are spending as much time with her as we can and offer help all the time. Even if she doesn't take it, I think she still likes to hear the offer. I'm sure she knows the truth of her illness, but wants to remain positive so she doesn't sink into depression. I get that. It's just hard to go through this when she doesn't want to talk openly about it. I'm hoping after she starts her chemo that she will start to open up. But if not, that's fine too. My focus now is to support my husband and make sure he is spending as much time with his mother as he can. Thank you for listening and letting me vent. Please keep my mother-in-law in your prayers, as I will keep you in mine. Thank you.

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