Lung cancer stage 4: Anyone's spouse refuse to help themselves?

@denise96, your post has touched me deeply for several reasons. I find myself writing a lengthy response, so feel free to read it in pieces, ignore it, or message me as you like.

I hear your words of emotional exhaustion and heartbreak, and I want to thank you for sharing your experience. It’s not easy watching a loved one refuse or dismiss measures that might help them feel better.

As a lung cancer patient myself with a supportive wife, I can see how easily the role of caregiving can become overwhelming. You’re carrying the weight of 2 worlds: your husband’s ever-evolving needs and the need for your own health and emotional well-being. When your efforts meet with resistance, it leaves you feeling helpless, worn down, and resentful – even though your continuing efforts make it clear that you care deeply for your husband’s well-being.

I also used to be a first responder in search and rescue. Ever since the Oklahoma bombing, we’ve recognized the need for first responders to process the emotions they feel while doing what they do. In particular, the community learned that no one can shoulder the pain alone. Seeking support for yourself is not a sign of failure; rather, it’s an essential aspect of being able to continue to provide what help you can to your spouse. With all this in mind, I have a few suggestions. Again, take what you can use and ignore the rest.

1. Neutral Third Party. Does your hospital or cancer center have a patient navigator, oncology social worker, or nurse advocate? These people can be invaluable in helping you two have these tough conversations.
2. Framing. Instead of telling your husband, “You should do this,” try relating medication or nutrition to how it might reduce his pain or improve his comfort in the short term. Avoid asking for compliance. Instead, focus on his quality of life.
3. Ask His Oncologist for Help. We all know it can be difficult to convince a spouse of anything. A direct phone call from his doctor or nurse may be received better, even if they are saying the same thing you are.
4. Self-care. You might think it selfish, but you must carve out time for yourself. Take a walk, leave the house, and have coffee with a friend, or see a hysterically funny movie. Whatever refreshes your soul. You’ve already taken a good first step in reaching out to this support group. Check around and see if there is an in-person support group in your area.
5. Leverage Compassionate Listening. Recognize that his hostility and stubbornness may not reflect on you but are his way of expressing his own fear or feeling of being overwhelmed. Speaking as a patient dealing with intrusive symptoms myself at the moment, I know that the experience can be quite emotional and difficult to understand. Plus, your husband’s emotions (and mine) can change from day to day and hour to hour, which can also lead to confusion and a feeling of being overwhelmed. If possible, see what anxiety underlies his refusal to take medication. What aspect of his journey does he complain about?
6. Hospice or Palliative Care. Palliative care used to mean hospice, which people think of as preparing to die. It’s not always like that anymore. Palliative care specialists focus on comfort, symptom management, and quality of life. They can help your husband manage pain, nausea, or any other symptoms your husband is experiencing in a way that feels less rigid.

Your intentions, compassion, and love are clear. Please remember to show yourself some compassion as well. Reaching out for help is not a sign of weakness. Instead, it’s essential to carrying on in your emotionally taxing role.

Lastly, one thing I’ve learned in my own 6-year cancer journey and during search and rescue is that we can’t always save everyone from their poor choices. But we can still love them through their struggles. Remember, you’re not alone. Many caregivers share these same challenges, so find the resources out there to support you.

I’m joining the others in sending you much warmth, empathy, encouragement, and eeeeeease. You’re doing the best you can under tough circumstances. I hope you find opportunities for self-care and gain peace from the understanding that your efforts are an expression of your love, whether or not they appear to be appreciated on the surface.

I'm sorry your you and your husband are going through this. I don't think there is one good way to respond to a cancer diagnosis. I was diagnosis in July. I just complete 6 cycles of chemotherapy 12/9. I have a rare aggressive cancer with a poor prognosis. Its was really hard to wrap my mind around this. I even questioned the value of chemotherapy. I think what you are doing is perfect. If he doesn't want you to encourage him verbally then maybe you can do things with him that you know brings him joy and just plan love him.

I'll be thinking of you.
Denise

Hi Denise,
I'm so sorry that your husband has cancer! My husband also had stage 4 cancer but he had it for 14 years before he died last July. My husband also drank coffee but he would drink water. That's very important for anyone; healthy or not. However, what my husband didn't do is to get anymore of the Chemotherapy or Keytruda treatments after he reacted badly to them. He almost died from Keytruda. But thanks to a good primary care doctor who got my husband to the right specialist, a person who handles pancreatitis which is a known side effect of Keytruda, my husband survived. The cancer doctor was unhappy with him not agreeing to anymore treatment. (Keytruda infusions cost $25,000 each! My husband had just been approved for 10 more infusions.)

Your husband is probably frightened about the future. Anyone would be in his situation. Plus he wants his life to be the way it always was. My husband didn't want to give up smoking but he managed to. He always missed his cigarettes.

Perhaps you and your husband should pray together and let God handle the situation. After all, it is God who eventually decides when and if you will die. It is stressful and hard being a caretaker but just show your husband a lot of love and kindness. My husband and I told each other how much we loved each other everyday; to the last day of his life. I'm so glad we did! It made things easier and less stressful. Between that and praying we managed to get through the bad times. My husband is up in Heaven now with God and Jesus and he's out of pain. That helps me to get through each day since his death.

I wish you the best. I will say a prayer for the both of you.
PML

Sorry for taking so long to respond. Thank you for your kind response. I am sorry to hear about the loss of your husband. That had to be so hard on you. but he knew you loved him and you knew how much he loved you and that surely helps. Yes, sometimes you have to wonder if all the medical treatments for cancer are helping or making things worse. I realize the doctors are doing their best to help but each person responds differently to the treatments. I don't believe it is a one size fits all kind of treatment. I do have faith in my husbands oncologist, but with him not eating and still losing weight (he is 92 pounds) as of last week, I just don't know what to think. Something is happening that causes him to throw up when he eats. It is not food, it is more like phlegm. So then he is afraid to eat. I don't know how he keeps going with as weak as he is. I am thinking that he may end up in the hospital soon. He just can't keep going like this. He is scheduled for a brain mri on thursday, but if he is not feeling well, he already said that he won't go. I understand that. This brain mri had been scheduled in November. when we got there, they told us that we would have to wait an hour and a half. My husband refused to wait. Here we are in January and it hasn't been done yet. Well, one day at a time. Your prayers are appreciated Thank you.

Denise,
I'm sorry that things are not going well for your husband. His losing weight and throwing up food is concerning. When I said my husband almost died from Keytruda it was because he got pancreatitis which is a side effect of Keytruda. You might want to do research on all of the medications your husband is taking and the treatments such as chemotherapy that he's had to see what the side effects are that may be affecting his physical condition. The Mayo Clinic website is very good for this sort of thing. I used it all the time for my husband. I don't blame your husband for not wanting to get an MRI. That's an awful ordeal to go through. Especially when you are not feeling well.
Do try and get him to drink more water. However, let him have his coffee and cigarettes even though they aren't the best for him. They are probably two of the few pleasures he still has left in life. Don't criticize him for wanting his cigarettes and coffee. Just tell him how much you love him and hug and kiss him a lot. He needs that. Also tell him that you will always be there for him. I told my husband that and it helped him a lot. Your mind plays tricks on you when you are so ill. At one point my husband thought I was going to leave and never come back. I assured him that would never happen and told him how much I loved him and hugged and kissed him a lot.
Keep praying with him. If your husband doesn't want to pray then just hold his hand while you pray with him. God is really all we've ever had in this life and he's all we need. He decides when you are going to die. Doctors as good as they are don't make that decision. Also if your husband does die, he will be up in Heaven with God and Jesus and all the angels and out of his pain and fear; just like my husband was. I hope that doesn't happen with your husband anytime soon. But if it does, you know that you will eventually join your husband in heaven and will be together again. That is what keeps me going day to day. I know sometime in the future I will join my husband up in Heaven when God decides it's my time.
Denise, I wish you and your husband the best and I will keep praying for both of you.
PML

Thank you for your kind words and concern. This morning, my husband told me that he has decided not to go through any more chemoimmunotherapy treatments. He has only had about 4 good days since starting the treatments. He has no appetite and just is suffering so much that he just wants it to end. I called the oncology nurse this morning and am waiting for a call back. The oncologist had told him at the beginning, that without treatment he may have 6 months. With treatment, 2 years. But only God knows. One of my biggest fears is that he does not know Jesus. He believes in God, but he does not believe that Jesus performed miracles or that he was born of a virgin. I have tried talking about this with him, but he just gets angry and tells me that I am crazy if I believe all that stuff in the bible. I asked him if he wanted my pastor to come talk to him and he said NO. I might have her come anyhow. Thinking about him going to hell (which he also does not believe in) scares me more than anything. I am not a model christian but I do believe that Jesus is my personal savior although I probably have given him some gray hairs. lol I am a believer. I need to get ready to go to the store before the visiting nurse gets here. Thanks again and take care of yourself.

Denise,
Perhaps some of the physical problems your husband is having may be due to having both the chemotherapy and immunotherapy. Sometimes it can be too much on your body even if it's supposed to be good for you. Maybe he just needs to give his body a rest for a while. You are right about only God knowing when we die. My husband quit having chemotherapy and immunotherapy and even refused anymore CT scans since they accidentally gave him the wrong medicine and it affected his memory for a while. However, he also lived 14 years with cancer and no treatments. I think it was an answer to all of our prayers.

It's too bad that your husband only believes in God and not Jesus but it's good that at least he believes in God. Don't feel like your husband is going to hell. God is a loving and forgiving God. He understands what your husband is going through now and why he is thinking like he is. God knows that your husband is ill and probably very frightened. What you need to do now is what us Christians are supposed to do and that is pray for your husband. Ask God to help your husband believe in Jesus and that he is the savior. Put everything in God's hands and just have faith. It will work.
I wouldn't call in the pastor. Sometimes they can just be irritating to people who are questioning the Bible. Your poor husband doesn't need anymore stress in is life. He's dealing with enough.
I will continue to pray for both of you also.
PML