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How to Handle Mom's Denial

ep374
Posts: 5
Joined: Nov 2012

My mom has uterine cancer, stage IVB. Diagnosed 18 months ago, and she went through surgery and chemo. When she was first diagnosed, the doctor's office was all sunshine and rainbows "Oh, you're going to be just fine, we'll do surgery, you'll have chemo, we'll get it all." I listened very closely to what they said, however, and there was a brief mention made that the treatments, given her stage, were not going to be curative, that instead they were meant to prolong life (my mom did not hear this). Obviously, there is a big difference between the two. My mom has consciously avoided asking the doctor questions about her care because, in her words, "I don't want to know how bad this is." I have always gone along with whatever she wanted, for fear of upsetting her.

Here is the problem. Now the cancer has come back (10 months after she completed chemo) as a distant metastasis to the omentum. She is devastated. I think the denial played a part in this, because she was so hopeful the first time she went through chemo. She asks the doctor nothing, he tells her nothing. She will have to undergo more surgery and more chemo as a result of the recurrence.

I am very concerned, because chemo was very devastating on her physically the first time around (she is 68). We have friends and loved ones all over the world she might want to visit and spend time with, however I am concerned that if she stays in denial about the seriousness of her condition, the subsequent surgery and chemo treatments will leave her too weakened to travel and enjoy herself. In other words, I am concerned the amount of denial she is in, the refusal to ask questions, etc, will ultimately impact her quality of life. I'm also concerned that the denial will prevent her from feeling a sense of control over her medical treatment and impact her ability to make informed decisions about her health and her treatment. I also wonder if it wouldn't help her anxiety to know more of what to expect, because I think much of what is driving the anxiety is a great fear of the unknown.

My question is this, do I continue to just go with the flow and play along with her denial, or do I sit down with her and gently suggest it is time she starts asking more questions about her overall prognosis, as a means of increasing quality of life, exercising more control over medical decisions, and improving overall quality of life? My greatest fear for her is that she will one day regret that she didn't ask more when she had the opportunity.

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

Follow your conscience, I believe that every patient (even in denial) needs to know the whole truth. Prayers to you. Kim

ep374
Posts: 5
Joined: Nov 2012

Thank you so much for your reply - I think I've found a way to balance all this out (see other reply below). I really appreciate you taking the time to reply.

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I keep telling myself that I am just going to lurk and not write anything, but I just can't help myself.

Although my husband accepted from the beginning that he was just buying time, he still had hope. I think that is a part of the human condition. His first recurrence hit both of us hard because the "just buying time" became more real. I think his surgeon said it best when he told us that his stage was treatable, not curable, and life shortening. Yet each of our family members heard that a little differently. We each interpreted it a bit differently. One son hung on to treatable and one to not curable. I heard the life shortening part and kept thinking we weren't going to grow old together. I suspect that your mother is not so much in denial as she is choosing to interpreting her fate differently. My husband chose to interpret his as buying time and wanted to buy as much time as possible. That meant that he went through several surgeries, chemos, and one cycle of radiation. He bought 6 years. That was his choice, and I supported him anyway I could. Did he fight longer than I might have? Yes. But it was his life, and his death. Did he ask questions? No, but I did. I often knew the answers, but wanted him to hear them from his dr. Sometimes they were hard questions and even harder answers to hear. That way, he heard. If he chose to ignore or interpret the answers differently, that was his choice. I did get his permission before hand to ask the hard questions. Toward the end, I asked the doctor to be brutally honest with us. I asked it it was time to call hospice. Then I asked my husband what he wanted to do. Throughout the six years, we made memories. He had times when he felt good enough to travel, and times he could barely get out of bed. Each had their own challenges.

Now, what am I trying to say and rambling on about? I don't have any words of wisdom, but I can tell you that I cherish and feel blessed by the six years my husband bought. I followed his lead. Your mother may not so much be in denial as she is holding on to hope. It may be false hope, but is that necessarily a bad thing? I can't answer that question because each of us must find our own way through this ordeal, make our own choices. Each situation is different. My husband chose to fight knowing what the end game would probably be, and I chose to support his choice. It wasn't easy, but it was right for us. I hated seeing him in pain. I hated the side effects of the chemo and the recovery time from surgeries, but I loved him. That was what counted. Take care, Fay

ep374
Posts: 5
Joined: Nov 2012

Hi Fay,

I'm so sorry about your husband, and I want you to know how much I appreciate you taking the time to tell me about your husband and your family. I did a lot more thinking yesterday (before I saw the replies here on the board), and I came up with what I think is a workable solution (if in fact there can ever be a decent solution to something as awful as this is to go through).

I did a lot of reading yesterday about cancer patients and denial - I was surprised by how many studies have been done about it, and the wealth of information I found was really comforting. Basically, the conclusions from the experts say that it can be perfectly fine for a patient to live in denial - it lessens anxiety and is essentially a protective mechanism. I also read up about my mother's type of cancer, and the statistics governing recurrence. The long-term outlook is grim. She knows that on some level, which I think is why she doesn't want to discuss it with the doctor.

So here is what I decided to do - I'm going to just play along with whatever my mom is feeling on any given day. If she is feeling hopeful, or if she is feeling doubtful, I will just let her take the lead. I know in the back of my head ultimately where this cancer diagnosis is leading, so what I can do is, as what happened with your husband, when she feels strong enough to do things, I'm going to encourage her to do those things. I can encourage her to travel and see friends without reminding her "hey, by the way, you really need to do this NOW." That way, I respect her wishes to stay in denial, but then I can also be honest to the extent that I need to be to ensure she has the opportunity to do the things she wanted to do.

It's funny - I'm a therapist, and I know all about denial, yet of course when I'm the one going through something, I'm just as inexperienced and confused as anyone else would be. I take a similar approach with my own patients, especially those who have been through a traumatic experience - I let them take the lead. However they are feeling on a particular day, that is what we go with. It works well for them, and I think it should work well with my mom. But to get to this conclusion, it has really helped to talk to others and do research.

Fay, I also wanted to comment on what you said about memories. Last Christmas my mom was going through her first round of chemo. Christmas has never been a particularly great time in our family (past memories of lots of arguing relatives! :), but I have to say it was the best Christmas we ever had, because we didn't take it for granted or get annoyed by it like we had in the past. And some of my happiest memories have been seeing my son snuggle with my mom when she was feeling tired from the chemo, and he would tell her funny stories to make her laugh. Cancer is a really terrible thing, but I can't say that it has been all bad. Sure, I have had a lot of anger and upset feelings about "why my mom?" but if anything, it has made us appreciate every day. I appreciate I can still pick up the phone and call her. Little things like that.

If anyone else has advice for how they have handled denial in a loved one, or any feedback on my plan, I would appreciate it. At the end of the day, I really love my mom and I just want her to be as happy and as comfortable as possible.

here4lfe
Posts: 294
Joined: Jan 2010

Just follow her lead. She is the one who has to marshall whatever inner strength and coping mechanisms to handle the diagnosis, therapy, side effects, and the emotions of those around her. Go out and have some fun. She's still here. My wife and I would go out to eat after each doctor's appt just to unwind and be around people. She always said she drew strength from the energy of others. I knew her diagnosis was terminal, and she didn't ask too many questions, which I think allowed her to live her life as normal as possible. She didn't want a pity party.
Best

ep374
Posts: 5
Joined: Nov 2012

Thank you for sharing about your wife. You described my own mom perfectly - in our family, we don't like pity. I think part of what has been so hard for me is her wish at initial diagnosis for no one to know (she was more open about it once it was decided that she would have to have chemo, because there are obvious physical changes that accompany it), and now that it has recurred, she doesn't want anyone to know either. It's hard to hold things in when the closest person in my life is going through this, but again, she doesn't want to be treated like, as she puts it, "a cancer patient." I think it's because she is, like anyone else, made up of so many different wonderful qualities, yet when people know a person's diagnosis, they tend to focus only on that. She doesn't want cancer to define who she is.

The best "medicine" for her is being around my son and our dog. It's impossible not to laugh when the two of them are playing and acting silly. As you noted in your post, there is a lot of strength to be drawn from little, everyday things like that.

Thank you for your advice. I actually feel so much better, just making the decision to do whatever she needs at any given moment. It was the indecisiveness that caused all the worry. All the best to you as well.

ep374
Posts: 5
Joined: Nov 2012

Today I'm just appreciative of the little things. My mom and I enjoyed a good belly laugh - over one of my friend's husbands, who, after finding out Hostess is going out of business, is hoarding Twinkies. Today is the first day I felt a little normal since finding out my mom's cancer is back. Hearing her laugh to the point she couldn't catch her breath made me happy.

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

ep, my next door neighbor had friends all around the world. When he learned that the recurrence of his lung cancer was Stage IV and he was going to die (which may have been the case in the first place, but he wasn't told), he planned a trip around the world with his wife to visit his friends. In doing so, he gave them a real gift in the opportunity to say goodbye and to tell them how much they meant to him, and it taught all of us how to die.

Perhaps that model could be helpful to your Mom. She'd need someone to travel with her, but it might also give her a sense of fulfillment to have such positive experiences in her final days if she's well enough.

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