Caregiver Issues: My husband won't let me help with cancer care

Hi,
I'm so sorry that your husband has lung cancer and that you are also having such a hard time caring for him. My husband had lung cancer also and sometimes he was difficult to care for. Your husband is frightened due to his cancer. I know my husband was too. Men often don't like to admit that they are scared so they react in other ways; sometimes not such pleasant ones. It's hard but hold your anger back. He's dealing with enough problems right now. You are the best care giver for your husband! You are his wife who loves him and married him. Show your husband how much you love him. Tell him that often. I know I did with my husband and it helped a lot. I'm so glad I told him often how much I loved him because he died in 2024 and I can't tell him that now.
Another thing that helps immensely is to take all your problems to God. Just talk to him like he's your best friend and he is. God knows what you are both going through and he'll be there for you. My husband and I prayed together everyday and also read the Bible together. It helped us to get through an awful time!
I will say a prayer for both of you. I wish you both the best.
PML

@pml
Thank you much for the kind and helpful words.
I am so sorry about your husband and for your loss.
I am going to try my hardest to be calmer.
He does know I love him and, we say it to each other often.
He also thanks me and is grateful for me being there for him.
We are both so scared , his diagnosis is very new so, we are trying to get on the same page.

@sipka
I'm glad I could help a little. I'm also glad that you both tell each other that you love each other! Plus your husband is so grateful for you. That's a good start!

This is a scary time for you but there are some things you can do to alleviate some of the scariness. Research all the side effects of any medications your husband is taking and any treatments they are recommending. I did that for my husband and it made things a lot more clearer. You can do that research on the Mayo Clinic website. It's a very trustworthy site. You will get correct information there. If you have concerns with what you find in your research share it with your husband's doctor.

My husband reacted badly to many of the treatments they gave him; Chemotherapy, Keytruda etc. He finally refused any and all treatments. He lived 14 years with lung cancer. This doesn't mean those treatments aren't good for people. For many they are very good. But they weren't for my husband. We did encounter a doctor who was very upset because my husband wouldn't get anymore Keytruda treatments. I think the doctor was mainly concerned over losing the $25,000 per infusion. My husband was receiving two infusions a month with very bad side effects. Regardless, we found another cancer doctor.

One thing to keep in mind is that it is your husband's body and his money. He can make the decision as to what is done to his body and what his money will be spent on. The doctors are wonderful and very dedicated but it's not their final decision. It's important to take their advice. They know what they are doing. But if it reacts badly for your husband or he doesn't feel right about it, it's entirely his decision what to do. Sometimes we get overwhelmed by the experts.
If you need to talk, I'm here. I have a lot of time these days. Besides going through lung cancer with my husband I also took care of my Mom for 10 years when she had pulmonary emphysema, oxygen 24 hours a day, arteriosclorosis and three bleeding ulcers. Mom died in 1991. So, I have some understanding of the procedures you and your husband may be going through. Possibly I can be of some help to you.
I'll remember you both in my prayers.
PML

@sipka,
Hello, I'm writing from the reverse side of the coin--I have the lung cancer and my husband is my caregiver. I'd like to recommend counselling for both of you. As pml said, you are the best caregiver for your husband, but that doesn't mean both of you have to go it alone. It's hard to offer help that doesn't seem to be appreciated (as my husband can tell you) and it's harder to accept help that you don't really want but probably need. My husband and I both have a counselor (separate meetings) with most of our meetings being virtual, since the counselor is 30 miles away. You need someone trustworthy to unload on, to make suggestions and sometimes to problem solve. Even if your husband refuses the help, having a counselor can help you.
It's totally normal to feel anger about the cancer no one wanted. I'll wager your husband is angry (and maybe afraid, too) about the cancer, and you have to cope with this problem you didn't ask for that's messing up your lives.
Your comment about the food is a real issue because the oncologist has probably given your husband a "cancer diet" and he doesn't like what's on it. I know I didn't. Hopefully, at some point your husband will be willing to compromise and accept a favorite meal that's been modified to fit his cancer diet. I took me 6 months to work that out, and I'm the cook in the family.
God bless you both

I've been on both sides. I was my mom's primary care partner four years before my stage four lung cancer was diagnosed. Talk to your primary care doctor about antidepressants for you and for him. We (patients and caregivers) are the people for whom these medications were developed. And you don't have to stay on them forever.

I feel so helpless. My husband has pain and has pain meds but some, that the Dr. ordered are declined by our insurance company. It is so hard to see him in pain. I try to help and make suggestions but, he is just frustrated and a bit angry , which I totally understand. Does anyone have any suggestions on how to handle this and how to make him more comfortable ?

Has your doctor done the appeal process on the prescriptions he made? My palliative care doctor switched me from duragesic patches to buprenorphine (Butrans). They work ver well.

@sipka I agree with @denzie that you (and your doctor) should appeal. I've found that using the word lawyer/attorney, will usually escalate your issue to someone that has the power to fix it. sometimes the denials are automated or they're counting on enough people not having the time or energy to dispute them. this is also an area you can ask for help with if you have a friend/relative who is good at dealing with these kinds of bureaucratic issues.

I am sorry for your husband having cancer too.

My situation was the opposite. I had cancer last year and my caregiver husband was a mess.

He tried to be strong and helpful but had anger issues towards me constantly. He was mad about our lives being changed so much etc. He’s 78 and I am 75 We’re good now but it’s tough. I completely understand your problem.

@sipka, like others have mentioned, you can ask the ordering doctor to submit an appeal to your insurance company.

Pain makes people act in ways that may be out of character, like getting angry, being frustrated, or having a shorter fuse. It is heart-wrenching to see a loved one in pain and to not be able to do anything about it.

I'm sure he feels helpless and scared too. He wants to be strong and this dang pain is reducing him (and his strength as a man maybe too?). My dad was that way. He hated that control was taken away from him.

Is there anything you could do that might give him back his sense of control? Try to find something that doesn't involve asking him questions. I bet that drives him nuts (or at least it did my dad). He didn't want to be asked "Can I help you..." or "Would you like me to...." It was too much fussing and he didn't really have the energy to even make those kind of decision. The response was usually something that meant he just wanted to left alone. Sometimes he was kind in his refusal of help, sometimes sharp.

What do you think might make him feel he's in the driver's seat?