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Mom has stage iv lung cancer and won't talk about the 'what ifs'. This is really bothering me. What to do?

Cl2012
Posts: 8
Joined: Aug 2012

My mom was diagnosed with stage iv lung cancer about 8 months ago (liver, bone and brain mets). She has done chemo and radiotherapy but the past two months have been really tough for her. She feels a lot of pain, extreme fatigue and lost a lot of weight. Doctors told me that we don't know 'when' it will be the end but they are thinking weeks or a few months. The doctors never told her or spoke with her about life expectancy or that Her life wll probably end because of this disease.
She is my only parent, I am 27 years old and left everything to be with her full time. We have a good relationship. I have tried talking to her about what she feels and thinks but she won't open up. We never talked about end of life issues. I am afraid she will be hurt by me bringing it up. Has anyone been in this situation? Is it really important to talk about these things? And for whom? Why?
This has kept me up several nights. It is bothering me and I don't know what or how to do it. Or should ilet it go? Please help...

dennycee
Posts: 666
Joined: Mar 2011

Thiis one of those really tough things to ask and if they are mentioned only "in whispers" it is very hard to give them full voice. It may be that she doesn't want to talk about it because she is terrified of dying and leaving you alone. I will guarantee you that this is something that has been on the edge of her mind of her mind through the whole process. Do you have a sibling that is close enough physically and spiritually who can help you through this part? If not, sit down with her in the morning when she has the most energy and tell her that you need her help. Tell her that if she lives one month or a thousand more you still need to know what her wishes are.

Ask her if she wants to leave the decisions to you about hospice or burial or cremation. Tell her that if she does you will help her by preparing a Living Will and a Durable Power of Attorney she can inspect in private and make ANY change she wants. It is going to be difficult but you have to take the lead now.

I don't know where you live if there is a Gilda's Club or Cancer Support Center nearby or if your hospital has a meeting for Family and Caregivers you should go. It is very helpful to be with people who are experiencing the same thing. Your mom should go to and attend the Survivor or Patient group. It is very empowering. If she chooses not to go contact your local hospital or Cancer Society to have a volunteer sit with her.

My best to you and her both. Please let us know what happens.

dennycee
Posts: 666
Joined: Mar 2011

Meant to mention palliative care. The difference is that a palliative care plan lets you take meds for things like pneumonia if they arise. With hospice care you cannot start any kind of treatment unless it is to relieve pain. A good hospice program will allow radiation for pain. Hospice will not allow chemo or radiation for cure, palliative does. Palliative allows you to call 911 in an emergency, hospice does not.

vigilde001
Posts: 5
Joined: Sep 2012

I read your message on the other one that you wrote .. thanks for responding. you are 27 ? im 30 and only have my dad left and now he has stage four lung cancer with bone metastases. You only have your mom ? We are both taking care of them full time. I haven't been able to talk to anyone in my same boat yet. I hope to talk to you more.
My dad doens't talk about the what ifs yet either. He has done a will and power of attorney though but never talks about dying. I think he may be afraid to worry me. This may be the case with your mom .. although I cannot say for sure and I don't know her or you. In my case my dad might know it will come but doensn't wanna talk about it.
Hope to hear from you.

P.S I will write you on the other one where you wrote back to me.

Cl2012
Posts: 8
Joined: Aug 2012

Hi Vigilde001,

We are on the same boat! It is so difficult isn't it? My mom is having a really tough time tonight - with back pain due to bone mets. I gave her stronger medication and I am hoping she will be able to sleep tonight. It's hard because we never know what to expect. For example, my mom today needed about 3 times as much pain meds as she did yesterday- to control her pain.

It bothers me that we never talked about the what ifs, but what bothers me most is that she was never told exactly what is going on. She doesn't understand what stage iv cancer or palliative care really means and her doctor was never clear to her. I have two older brothers who were always against telling her, afraid she wouldn't be able to handle the news. I think she knows by now but I still want her to be able to talk to her doctor about this.

Tmrw I will be going to her doctor and I will ask him to come clean and tell her next week when we go in for an appt. I will be with her when it happens so this might encourage her to talk to me about it. Once I know that she knows, I might initiate the conversation... For her, and for me.

What I would say to you is give some time for your dad to process what is happening and tell him that you are available to talk whenever he is ready or wiling to do so. Another thought is for you to write a letter with all that you want to tell him if you had the conversation. I am sure you have a lot in your heart that must be expressed. So much to say... If you cant have an open conversation just yet, write it down. Write about your fears, your love, your imperfections, and your support. Write it to him and if you feel he needs to know you can give him the letter one day he is feeling a little better.

Even if he doesn't talk about it, at least ou know that he knows what ou want to say...
I am thinking about doing the same thing.

Stay in touch k?

Dawn50
Posts: 115
Joined: Sep 2011

I recently began hospice training and one of the first things they advised was that Hospice does not start or stop life saving or death slowing/preventing medications. All treatments are decided upon by the doctor and his/her patient. Hospice is there to give comfort and support.

Cl2012
Posts: 8
Joined: Aug 2012

Dennycee,

Thank you so much for helping me think through this. I have 2 older brothers. One of them lives far from where we are, he seems to be in denial or maybe this is too overwhelming for him to deal with.. My other brother lives about an hour away and he has been helpful, but he is very sensitive and overwhelmingly protective of my mother (sometimes hindering her autonomy and independence). We do not take turns and i am the one staying with her full time.

What I wanted to say is that both of my brothers (and their wives) were always against telling my mom about the specifics of her diagnosis/prognosis. They think we should protect her mental and emotional well being and not deprive her of hope. They also think this is a family disease and we should be making decisions for her...
I understand their point of view but i was always against keeping anything from her. She is a smart woman and she deserves to know and has the right to make her own decisions. I believe she is strong to cope with whatever is happening and in fact, has the right to take advantage of this opportunity to reflect upon her life, learn, and even grow spiritually.

I lived in the US most of my life and I am a US citizen but my family is in another country, which means I have been dealing with a lot of cultural/ethical norms I am not particularly used to. This also means that I have limited support system here, since my closest friends and people I love are in the US.

I respected my brothers decisions and didn't tell my mom what in fact should be said by her doctor at the time of diagnosis. I always encouraged her to ask questions but she didn't seem to want to know or talk about it. However, I think and feel in my heart that someone needs to talk to her about this. I am sure she has thoughts and feelings about it and I am ready to support her through this.

I was going to have this conversation with her but it is so difficult - I don't want her to think that I have "given up" on her and that I am being pessimistic.

She is supposed to have another round of chemo next week - I doubt she will be able to...
Tomorrow I will be going alone, to meet with her doctor. I am going to ask him to tell my mom (next week) exactly what is happening; to explain treatment options, including the possibility of stopping chemo. I will not delay this any longer. She needs to know - from the doctor, what is happening. I need her to know. This is what I plan on doing.

Sorry for the lengthy message. It is just helpful to write and put my thoughts in order.

Thank you so much for the support.

dennycee
Posts: 666
Joined: Mar 2011

Thank you for the update. It really is helpful to put things in writing to help think them through. Cancer is a family disease but there is only one person who can make the decision and that is the patient or the person the patient has assigned medical power of attorney. When mom has put her wishes in writing your siblings cannot step in and impose their wishes.

I often wonder who they are protecting when family members don't want mom or dad to be told. But I digress. Your mom is priveledged to have a daughter who has stepped up the way you have.

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