I need help dealing with my dying spouse.

@triciapd

I am so sorry for what you must be going through. I am sure that there will be lots of good advice from people more experienced than I.

It is sad that your husband does not recognize your stress and needs. I have not yet experienced a life threatening illness, but I can imagine its potential for making you self-centered. That being said, you are experiencing trauma and stress as well and deserve love, attention, and help.

I know that in caring for my very elderly father, the responsibilities and stressors often feel unbearable. I don’t imagine there is a way to “change” your husband. If he will cooperate with therapy, or speaking to clergy, etc—maybe that will give him an outlet to help him deal with what he is experiencing.

I would recommend the same for you. I speak to a therapist once a month and although she does not have any magical way to change my circumstances, just talking over experiences and feelings help. Also, if you can hire some help at home so that you can get out and engage in activities and friendships—that might help too.

I know how hard harsh words and dissatisfied spirit are to deal with. I struggle with it myself. I am sorry for all you are going through and pray peace for you.

Hello, @triciapd I’m Scott and I was my wife’s caregiver during her 14+ year war with brain cancer.

Early in our journey her neuro oncologist gave me some insight that helped me daily. It was “remember she lives every day fearing it will be her last. She is the one dying, you are the carer. You’ll need to remember to cut her slack often.’

Strength, Courage, & Peace

Are you getting help from Hospice? That might be helpful. I recall reading about how a person who is facing a terminal illness goes through stages of their focus going inward. Their relationships can be impacted. So sorry you are going through this.

I haven’t started hospice yet, but I did talk to them so that they’re ready because the time seems to be coming close according to the doctors, but they have a great system in place for any kind of help that you may need for yourself your family and your husband. You can still talk to the social workers and stuff at the hospital as well and see if they can help, but hospice might be the best bet. Good luck with everything. I’m so sorry you’re going through this.

I'm so sorry that you and your husband are going through this awful ordeal. That's very hard for both of you. My husband died of stage 4 lung cancer in 2024. He also stopped all treatments because he reacted so badly to them. Like you I was his caregiver. It is stressful and difficult for you but it is also very frightening for your husband to have this disease and it won't go away. Even if he doesn't respond as you would wish tell your husband daily how much you love him. I did that with my husband. It helped us through that time. After he was gone I felt so glad that I had told him how much I loved him while he was still alive.
Prayer also helps. God is there for both of you. We prayed everyday and it really helped us get through this difficult time. I'll say a prayer for you both also.
I wish you both the best.
PML

@triciapd, you've received some useful responses from fellow members - at least I hope they have been helpful for you. I like @celia16's suggestion of seeking help from your local hospice. They can provide support for you, not just the patient. You might ask if you can speak with a hospice social worker.

This is such a lonely period of time for you. You are committed to caring for the man you remarried. However, this has come at the cost of him not understanding your shared suffering, fears, and lonliness. Are you able to talk to him about your fears? Might this help to address the elephant in the room - death and fear?

I so appreciate everyone’s help. It is a difficult road for all.

@triciapd , it’s definitely a process. This Sunday will be the one year anniversary of my dad’s passing. It’s so surreal to me. We knew it was coming eventually, but the end was rather sudden and he was gone within several days. It’s difficult regardless of their age. I hope you have help lined up. In the end, if your loved one is in the home it’s extremely stressful and demanding. There’s so much care involved. That’s why professional help, like Hospice can be invaluable.

@triciapd I know the words I’m sorry can seem hollow but those of us who have been in your situation say it with a different voice. Hospice was so much help I will be forever thankful. Please reach out to them. They even provided me with a year of grief counseling after my husband passed. Many patients go through the stages of grief over what they see slipping away as their illness progresses. My son (a doctor) explained that the process his dad was going through was not directed at me even though his words hurt. It’s so hard, a journey we never wanted and stress we never imagined. God bless you. You are in my prayers.

He may not be able to take your perspective.
There is a wonderful book, No One Has to Die Alone, that really helps survivors support their loved one as they prepare to depart this life.
In our area we have a wonderful “death doula” service that helps patients and families understand and endure.
My husband is a cancer survivor and went through a stem cell transplant. It was and is a “high risk” situation. As his caregiver I got counseling myself and received peer mentoring here on Mayo Connect and through Blood Cancer United.
I am sorry for your pain and grief and I want to say this as gently as I can, but your dear one cannot take care of you in this.