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Lung cancer stage 4: Anyone's spouse refuse to help themselves?
My husband was diagnosed with stage 4 lung cancer in September of this year. Yesterday, Dec 11, he had his first treatment. He is getting Paklitaxel (spelled like it sounds), carboplatin and Keytruda. He will get these treatments on one day every 3 weeks. Today, he is not experiencing any side affects but from what I have read, many people don't notice side affects until 3 days after or so. My concern for my husband is that he only weighs 106 pounds. He has very little appetite and still smokes a pack a day. He also has advanced copd. He does not do any of the things they have recommended him to do. He is dehydrated but only drinks coffee all day. He will drink Boost so I try and have it on hand. Supposedly, he could have 2 years if he continues the treatments, but he is not healthy and does not worry about doing what he should. I try not to nag because when I do, he just gets angry. I think as being a caretaker, I have more stress than he does. I just want him to stay well, and do his best to do what they want him to do, but he just fluffs it off. Has anyone had a spouse that refuses to help themselves when they can?
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Thank you.
Oh, Denise. I’m so sorry to hear what you both are going through. Keeping you both in my thoughts. You are stronger than you think you are. Take help whenever it is offered.
Things have changed a lot since I posted that. After his second treatment in January, he decided that he wasn't going to take any more because he was so sick afterwards. Then we got hospice involved and they have been coming every week since then. The last time he was weighed, he weighed 94 pounds. I am sure he is much less now. He can't walk without a walker because he falls. He feel 6 times in the last 3 days because he wasn't using his walker. Now he does. His appetite is poor. The nurse that came today told me afterwards that he has declined since she saw him two weeks ago. A different nurse comes on alternate weeks. She said her guess was that he had less than two months to live. But like she said, it is only a guess. Only God knows for sure. But she said that his legs are starting to mottle (not sure of the spelling) and this is another sign that the end is not that far away. So, I made an appt with the local funeral home on thursday to discuss what needs done so it will be prepared when the time comes. I have talked to the social worker. It is hard for me to watch him slipping away day by day. He is often confused. So things are getting harder day by day. But with God's help, I will get through this. The nurse said that at some point in the near future they will need to bring in a hospital bed. That will not go over well with him. But she said we can't care for him properly while he is sitting in his recliner. He is very bull headed and fights any new thing they want to do which makes it harder for all of us to help him. You are right. These are and will be tough times right up the very end.
This must be so frustrating for you - and the feeling of helplessness is sometimes overwhelming. Do you have a good relationship with your husband’s oncologist? Is there a team treating him? He is probably also terrified. If you are in a big city, there shoud be resources both psychological and medical for him. Gilda’s Club is often very helpful for caretakers if there is one near you. If not, I would talk to his oncologist who may have a recommendation for a counselor - if not for your husband then for you. Best of luck to you both. Tough times.
You know it sounds like your husband is headed to another drug overdose, don't you think? Maybe it would be a good idea to take him to the hospital and have them treat him. I know nothing about what the best steps are to take in this situation. My brother is taking methodone which helps him with his pain - methadone is what they give people who are heroin addicts, it is an anti-opiate medication but it does relieve pain. I think you need to get a medical professional involved in what is going on. Hope this helps!
Good morning! I think you did the right thing by getting a priest to come out to see your husband. I have read that so many people are now having a hard time facing death because they no longer have faith and believe in God and the after life like people used to. Must have been crazy with him the last few days. My brother's nurses who visit him for in-home hospice keep telling him he can have any drugs he wants (as it is the end for him) for anxiety and pain. And he is okay with what they are giving him. He just sleeps a lot now. I think you are right about his need for more pain killers - I mean why not? Maybe he needs more priest time too to help calm him down. I hope he gets more pain meds - I can't imagine being in his predicament esp if he is going through withdrawal - who needs that! And don't worry about being morbid. I just hope for the best for him and you!
Good Morning. Sorry it has taken me so long to respond to your post. The last few days have been busy and yesterday was a horrible day. My husband was acting like a raving lunatic because he was having anxiety attacks. He was sobbing, shaking and he was screaming at me because I mentioned prayer for him. Told me to get away from him so I did. I left the room. I also was crying and did not know what to do. I called a priest as my husband is catholic but never a practicing one. I am methodist. Then I called Hospice to alert them of his behavior. The priest came out to give him his last rites. Joe seemed to quiet down at that time (of course, I had given him 3 of my own xanax). Hopsice did return my call and they said they would up his xanax. They told me that the next time he acts like this, I am to call them asap. He knows he is dying and he is angry and scared at the same time. I would be scared too. Then again, maybe he was in withdrawal because he was also out of his pain meds. He is an addict, I think I told you, and his meds have been cut way down since hospice found out about his overdose in september of last year. They have to protect their butt and I understand that. But if he makes them angry and/or tells them not to come back, he will have no one to give him pain meds. HIs pcp said she would never give him pain meds again because of all the times he lied to her. But if that happened, he would turn to street drugs. He is from a bad part of Pittsburgh and still has friends there that would get him whatever he needs. My Bells Palsy will never get better due to all this stress. This isn't the nicest thing to say but I wish the Lord would take him quickly and without any more suffering. Sorry for being so morbid today but yesterday just wore me out. I am sure you and your sister would understand. Have a good day.
Thank you! I think you are going to be okay and will get through all this just fine. It seems the closer people get to their end, the more they rest and sleep. This is where my brother is now with my sister. He no longer is having the intense pain he had from the radiation as things have been healing from that treatment which is good. I pray that everyone has an easy time of it moving forward. I think your husband has been popping pills and smoking tons due to his own stress and pain and that soon he will ease up on all that. I wish you the best as this is hard, being a caregiver. Do good things for yourself. Important! Oh - I found out that my direct paternal line is filled with guys who preferred business and other community activities and were not really interested in having families or family life. Seems I got some of that mentality as I selected having a career life and being free of constraints like kids and mortgages. Was it an inherited trait - who knows but interesting! LOL. Have fun and with your husband too - I am sure he needs more joy in his life too. Best to you and him!
Thanks for the suggestion of asking my sons. My youngest son is not working now. He does construction work and is very irresponsible. Lets just say that every gray hair I have came from him. My older son does help me alot as far as fixing my car, etc., and helping fix things around the house. He is a great kid. I just talked to my pcp and told her about my choking. She used to be my husband's pcp until he over dosed on his meds. She told him that she would never give him a pain med again. She was so angry with him. Anyhow, she said, "I hate to beat a dead horse, but I think most of these health problems that you are having now are stemming from the stress you are dealing with." I feel like such a wuss because I know that I don't have to deal with things like other caregivers do. Your sister for instance, I am sure has a much more stressful job of caring for your brother than I do caring for Joe. But I know there will come a day when I will be doing much much for him. It is so hard to watch someone you love suffer day by day. but he isn't suffering as much as your other people including your brother. Prayers for all of you. Have a great rest of your day.
We had to get the wider family involved to help with the additional expenses due to the care for my brother as he was and will always be tone deaf when it comes to money. You are not in the position to shoulder these expenses on your own and should not be expected to do that. Meet with your sons and their SOs and tell them you need them to help out with these additional expenses. Tell them about his nearly wrecked banking account. How much he needs to do these things to get through stuff right now. Give the sons an amount they need to send you each month like 200-300 a month. Do that and that way they are more actively involved. Also let them fill in for you a couple times a month so you can take some mini-trips as it is grueling to be a care giver as much as you love doing that for your husband. You might be surprised to see how willing they are to help right now which will take the pressure off of you. I hope that will help you - but just do it. Everything will work out. Really - and take care of yourself. It's not easy being a care giver -