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Origincyclist Asked August 2015

My Mother is in denial about Father's terminal illness. Any advice?

My Mother is POA and my father has stage 4 cancer and has done 3 rounds of chemo. Has lived with cancer for 2 years. He was in the hospital because of a related brain issue. The hospital had to discharge after a month and we found a care facility. He is going to do sub acute rehab. My Mother hopes to have him strong enough to try a new immunotherapy treatment recently FDA approved. My father can barely sit. Soils himself, can't feed himself, and is racked with pain from the cancer. We (siblings) have said perhaps it is time for Home Hospice. To keep him comfortable and ease his pain. My mother is in denial saying that she hopes that he gains his strength and will be able to do the treatment. But the siblings want Father to have some quality of life, however much is left. Mother is saying she is waiting on the Drs to tell what to do. The thing is they gave them two options to continue or stop. We even had a conference call with the Doctors who kindly took time out on a Sunday Morning to do so. She said she doesn't remember. I don't know what to do. She says she doesn't want to give up on Father, we don't want to but the siblings don't want him to suffer needlessly. Is there anything the siblings (all adults ) can do IF we fear Mother is putting Father needlessly in pain, thinking she is doing if for the best intentions?

blannie Aug 2015
P.S. You can bring in hospice and if he improves, they will leave. That's not going to happen, but you can tell your mom that many people recover enough to go off hospice (which is true). The hospice people can work with her to accept what is going on.

BarbBrooklyn Aug 2015
What does your dad want? Is he competent to express his wishes? Unless he is unable to express them, POA does not get to be the decision maker.

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blannie Aug 2015
Does your dad have any kind of living will or advance care directive about his wishes for his end of life care? Is there a friend or a pastor who could talk to your mom about coming to terms with what his happening, since it sounds like she's not listening to you children?

And yes, what does your father say in all of this? Is he at all able to make his wishes known? I feel for all of you - it's a tough situation to go through. If the best hope with the experimental treatment is an additional three months and he's in terrible pain now, I don't see how it makes sense to prolong the inevitable.

Countrymouse Aug 2015
Origin, my instinct - no more than that - is that if your father could bear no more treatment he wouldn't have said "I don't know." He would have said "stop." He may yet do that.

You could perhaps put it to your mother that he must be allowed the option of admitting defeat and not forced to be heroic. The imperative of "not giving up" can cut both ways - she doesn't want to give up on him, he doesn't want to give in while she still needs him. Their situation is heart-rending, and must be agonising for all of you to witness. I'm so sorry for it.

But Pam is right, and I'd add to it that in the pain that she's going through your mother might naturally latch on to anyone who was remotely blameworthy for the sake of simply releasing emotional tension. Keep your heads down, whatever you do.

jeannegibbs Aug 2015
I called in hospice for my husband. It was a very, very difficult thing to do. I did not consider it giving up on him. but trying to make the inevitable less gruesome. He died in our bedroom, holding my hand.

My sisters and I put Mom on hospice, in her care facility. After a few months she "graduated out" of the program. She had gotten much better (thanks in part, we think, to the extra care and attention of hospice.) So telling your mother that hospice will bow out if Dad gets stronger is the truth. (It's the "if" that is not realistic.)

I hope Dad can go home. I hope hospice can be involved. Even if it does nothing for Dad that couldn't be done without hospice, it can be such a comfort to your mother and to all of you, gently preparing her for the inevitable.

She is in charge. Don't try to force anything. But it sure would be wonderful if she can accept the help of hospice at this time.

GardenArtist Aug 2015
I doubt that your mother can give up on your father; it takes a tremendous and agonizing effort to recognize that further treatment isn't going to be beneficial, as well as tremendous will power to make the decision not to continue treatment.

It's very difficult to accept that further "treatment" will not in fact change anything, and could in fact prolong the agony. But I think it's human nature to want to try whatever might alter the course of the cancer.

You might ask the doctors about the new immunotherapy treatment, its success, and the probably of changing anything for your father. If it doesn't provide either but also isn't able to ameliorate his suffering, it doesn't seem like a good option.

I agree though that what your father wants is important. It doesn't seem as though he has any quality of life now.

A close friend offered a very beneficial way of viewing end of life decisions. When the cancer can't be cured, or if additional treatment only prolongs life but doesn't improve it, the family's decision to discontinue treatment is an emotional challenge, but also allows the loved one to avoid continued pain, agony and suffering.

That's the key issue: when the end is inevitable, you save your father from more misery and pain.

I wish you and your family peace as you face this very difficult and emotional issue.

pamstegma Aug 2015
Origin, your mother is not about to hand over any control to you. I know this is agonizing, but you have to step back unless she is showing some signs of dementia herself. If you bring in Hospice now, while she is against it, she will call you a murderer for a long long time. Like forever. Sending prayers for all of you.

vstefans Aug 2015
Even if mom still insists on the immunotherapy and no hospice - and I'm hoping it's not standard chemo that will only make him feel worse - you should be able to insist on better pain management, and absolutely get him home. Mom is scared of being a widow, and scared of the grief, too scared to think it though and come to grips with what's really best for dad, but all you can do personally is be there for her and let her know you will be there before, during and after for her in any way you realistically can. Maybe the SW attached to the oncology service would spend some more quality time with her too on this.

MaggieMarshall Aug 2015
You MUST do whatever you have to so that your dad is kept relatively pain free. He doesn't have to be on hospice for that to happen. If the doc says he/she can't prescribe enough of the good stuff unless he's on hospice? Then you MUST move on your mom if she blocks it. Whatever it takes.

Just imagine being in intractable pain 24 hours a day. Tell your mom she is being cruel. That you will take better care of her than she is taking care of your dad. Whatever it takes.

cwillie Aug 2015
Try to talk to you father about his wishes with the social worker or doctor present. When you ask of course he is going to say "I don't know", he doesn't want to die, but he doesn't want to suffer either, and he must be aware of the conflict in the family so he doesn't want to pick sides and further the rift.
The health care team are used to talking about DNR's and such with patients, and they can present the options to him realistically. "If this happens, do you want A or B, and if that happens should we do C or D", specific to his needs and diagnosis. I expect a hospice provider would be versed in this as well.

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