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

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

Thank you for your kind words. I pray but my husband does not believe in Jesus as our savior and does not want to talk about it. but he in on prayer chains from my friends and lots of my friends and family are praying for him. When I told him that he was on 3 prayer chains, he said, "Good for them." I replied "No. Good for you."

In many ways it is much harder being the caregiver than the patient. I was my mom's caregiver 4 years before my own stage 4 diagnosis.

Remember the tobacco companies spent 100s of millions of dollars finding ways to make it more addictive. And the hundreds and of billions of dollars they have to pay the states demonstrates that guilt.

Ask his doctor about appetite stimulants. There are many reasons for loss of appetite. Does he complain of nausea?

Does he like ice cream? I ate tons of hot fudge sundaes and put weight back on. Make milk shakes with boost and protein powder.

Sending hope for a good outcome.

Welcome to Mayo Connect @denise96. It warms my heart to see our community reaching out with care and suggestions for you.
While we are all different, being inside the head of a recently diagnosed Stage IV patient can be a confusing place. From your description, my guess is that your husband isn’t one to talk about his feelings. I’m not always great at that either, and it takes me some time to process what’s happening before I can open up and express what I’m feeling and even thinking. The loss of control and the unknown of what to expect is just too much to deal with early on. He may need some time to process, and he may never come around.
A palliative care consult may be helpful. They can often help with managing side effects, and with understanding what to expect.
Tell him that you love him, and that you need him to stick around. Ask him to try for you and if you have children or grandchildren try for them too. There are people in his life that love him and would miss him very much, reassure him of that.

Hi Denise,
Your husband is going through a lot right now and is probably very frightened about what is happening to his body. It doesn't matter that he doesn't believe in Jesus as our savior or in God. God understands and will help your husband through this difficult time. Belief in God and Jesus on the part of your husband will come in time and all on his own. It's good that you and others are praying for him. God will answer those prayers. Just keep telling your husband how much you love him and hug him a lot; unless hugging for him is physically uncomfortable. In the meantime, just remember that it states somewhere in the Bible but I don't remember where, "This too shall pass." and it will.
I'll remember you and your husband in my prayers too.
Merry Christmas!
PML

Thank you.

Thank you for your response. I have tried making him milkshakes but he would not drink them. He took a few sips and dumped the rest out. He will drink a Boost occasionally. The pills they gave him for after chemo treatment are just sitting on a shelf. He took one and has not taken another one. This has been since thursday. Yesterday, he said he was nauseated again. I told him that he should take another nausea pill but he refused. They gave him claritin for bone pain that may occur after having the neulasta onpro being injected into his arm. He has taken one so far and said he did not want anymore because they don't work and that is just stupid to think claritin would help with bone pain. The only thing he will eat is processed foods and a few slices of cheese. I made him homemade chicken noodle soup but he would not eat the chicken. Said he did not like the chicken. (It was breast meat) They gave him remeron to possible help him to gain weight. He took a few and said they did not work and he threw them away. If I say anything, he gets mad and says that i don[t know what I am talking about. I refuse to argue with him because I never win. So, if he just wants to waste away, so be it. Anything he would like to eat I would make for him, but it is hard to be a caregiver when nothing pleases him. He won't eat fruit nor vegetables. So prayers at this time is my only hope that he will have a longer time to live and to feel better.

Thanks for your concern.

I am so sorry. I understand your painful situation, I cried a lot. Although my husband was also cranky and disagreeable, and unable to eat after chemo, I found the only thing he would eat was Entemanns chocolate covered donuts, anything was better than nothing. He found that Zofran that dissolved in his mouth did help nausea within 20 mins, when the pill versions did not. I told my husband that we need to get thru this together and he can feel better if we work together using trial and error.

Pls keep us posted. This is a great sounding board.

@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.