1. < Caregivers

Morbid question: I'm really afraid of finding my husband dead

Posted by denise96 @denise96, Dec 21, 2024

Twice now I have found my husband who has late stage iv lung cancer and advanced COPD unresponsive and had to call an ambulance. I am so afraid one of these days I will find him dead. This terrifies me. He goes into respiratory distress because his lungs are not strong enough to push out the co2 in his system. The doctors want him to wear a bipap but he refuses to do so. He takes over 100 mg a day for pain and the doctor told him that with the escalating pain control with narcotics that there may come a point where a full code status won't work. He is on 80 mg of oxycodone, two time released xtampa (oxycontin er9) and also takes xanax. I know he takes more than he should. He will not allow me to dole them out to him as prescribed. He is very much addicted. I totally understand the pain he is in and the depression that comes along with knowing you are terminal. That has to be horrible. Everytime he is sleeping in his recliner, I check to see if he is still breathing. HIs breathing is so shallow that I have to watch for a few minutes. I don't know what I would do if he dies in his chair or does not get up from bed. I will lose it. I wish he wasn't sick and could be healthy again. And maybe if he passes away in his sleep that would be a blessing. But call me shallow, I don't want him to pass at home. Guess I am being selfish. Has anyone experienced this and what did you do? Sorry for such a morbid question, but I am really afraid of this happening. He is so sick. God help him.

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minniem | @minniem | Dec 28, 2024
In reply to @denise96 "I don't blame you for letting your spouse eat what he wants. What's the point? If..." + (show)
@denise96

I don't blame you for letting your spouse eat what he wants. What's the point? If they are terminal or not able to ever get better, let them do what they want-within reason. They do not have much joy left in life. I sometimes wonder if that is the reason my husband still smokes 2 packs of cigarettes a day. Maybe he is hurrying it along. But that is the enjoyment he has left, He is sick, has no appetite , can't really go anywhere except to the doctors . He does enjoy watching tv though. So, I don't say a word. I do give him his oxycodone every day, because if left in his hands he would take more than prescribed. Oh, the joys and trials of being a caregiver. Have a good day.

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We had a gut- wrenching conversation tonight that had left me adrift. My husband does not admit that he has CAA/ MCI and that he ever had a TIA. He says all the doctors are wrong. He does not acknowledge any of the findings- and I understand. It is hard, it is scary, and no one wants this.

He desperately wants to drive and says that if he cannot drive- then je just wants to die. He has no hobbies and he wants to work - but he can’t get to a job and I doubt he could even get through an interview. I am just floundering and I hurt so much for him and for us.

I was crying and he told me that I cry too much. I am crying now as I type - you are the only people who truly understand.

REPLY
1 reply
denise96 | @denise96 | Dec 29, 2024
In reply to @minniem "We had a gut- wrenching conversation tonight that had left me adrift. My husband does not..." + (show)
@minniem

We had a gut- wrenching conversation tonight that had left me adrift. My husband does not admit that he has CAA/ MCI and that he ever had a TIA. He says all the doctors are wrong. He does not acknowledge any of the findings- and I understand. It is hard, it is scary, and no one wants this.

He desperately wants to drive and says that if he cannot drive- then je just wants to die. He has no hobbies and he wants to work - but he can’t get to a job and I doubt he could even get through an interview. I am just floundering and I hurt so much for him and for us.

I was crying and he told me that I cry too much. I am crying now as I type - you are the only people who truly understand.

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I am so sorry for what you are going through. It is truly hard especially when your spouse denies that he has any of those problems. How long has he had CAA? And was the stroke very long ago? I was just wondering how long you have had to deal with this. I had to look up CAA because I did not know what that meant. So it is similar to dementia but different, right? He certainly does not seem to understand what is happening therefore, he doesn't understand why you are crying. Was he ordered by the doctors not to drive? It definitely would be dangerous. How old is your husband? Is he lucid enough to work?
Sorry for so many questions. Evidently by your comments, he isn't. You know him best as you spend everyday with him.
this has to be so hard for you.
Are you able to attend a caregivers support group or can't you leave him alone? I am going to attend a virtual meeting in January. I got the info from here.
So, I figured what the heck? I can do a video one and see what it is all about. Maybe you could do this, too. I hope you have friends and family around to give you support.
sharing our problems with others seems to lift the load a little bit even though they may not truly understand. My husband knows that he has copd and advanced stage 4 lung cancer. He has been miserable ever since he got his first treatment. He has his second treatment on January 2. It is a 7 hour day for him. As sick as he has been, I am surprised he is even going back. but it is horrible to listen to him moaning etc., as I hate to see someone suffer. He does have good days but they are few and far between. I quit my part time job as I can't be away from him that long as I have caught him smoking cigarettes with his oxygen on. There are many things that he does that could cause risks for him and me. He just told me that the pain pills are not working and he feels like just shooting himself. Yes, all of us caregivers are in a hard position. I am a believer and I do pray but sometimes I feel as though God is not listening, but I know in my heart that he is. Stay strong my friend. Prayers and may God bless you and your husband. It is good to vent on here. There are other people who understand and are always ready to comfort. Post anytime. I check this website everyday.

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1 reply
cmccall813 | @cmccall813 | Dec 29, 2024
In reply to @becsbuddy "@cmccall813 Welcome to Mayo Clinic Connect! Have you found the transplant discussion group and the stroke..." + (show)
@becsbuddy

@cmccall813 Welcome to Mayo Clinic Connect! Have you found the transplant discussion group and the stroke groups?
https://connect.mayoclinic.org/group/transplants/
https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/
These might be 2 groups that you could be interested in!
We certainly welcome you and hope you are with us for awhile.

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Yes I have added those groups. Thank you.

REPLY
minniem | @minniem | Dec 29, 2024
In reply to @denise96 "I am so sorry for what you are going through. It is truly hard especially when..." + (show)
@denise96

I am so sorry for what you are going through. It is truly hard especially when your spouse denies that he has any of those problems. How long has he had CAA? And was the stroke very long ago? I was just wondering how long you have had to deal with this. I had to look up CAA because I did not know what that meant. So it is similar to dementia but different, right? He certainly does not seem to understand what is happening therefore, he doesn't understand why you are crying. Was he ordered by the doctors not to drive? It definitely would be dangerous. How old is your husband? Is he lucid enough to work?
Sorry for so many questions. Evidently by your comments, he isn't. You know him best as you spend everyday with him.
this has to be so hard for you.
Are you able to attend a caregivers support group or can't you leave him alone? I am going to attend a virtual meeting in January. I got the info from here.
So, I figured what the heck? I can do a video one and see what it is all about. Maybe you could do this, too. I hope you have friends and family around to give you support.
sharing our problems with others seems to lift the load a little bit even though they may not truly understand. My husband knows that he has copd and advanced stage 4 lung cancer. He has been miserable ever since he got his first treatment. He has his second treatment on January 2. It is a 7 hour day for him. As sick as he has been, I am surprised he is even going back. but it is horrible to listen to him moaning etc., as I hate to see someone suffer. He does have good days but they are few and far between. I quit my part time job as I can't be away from him that long as I have caught him smoking cigarettes with his oxygen on. There are many things that he does that could cause risks for him and me. He just told me that the pain pills are not working and he feels like just shooting himself. Yes, all of us caregivers are in a hard position. I am a believer and I do pray but sometimes I feel as though God is not listening, but I know in my heart that he is. Stay strong my friend. Prayers and may God bless you and your husband. It is good to vent on here. There are other people who understand and are always ready to comfort. Post anytime. I check this website everyday.

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@denise96 - thank you for your reply. Today was a better day for us and I am using the Serenity Prayer - and looking at myself to have the courage to change things about myself.

CAA is associated with dementia. It’s kind of like: Dementia can encompass CAA but not all CAA is dementia.

I know you have your hands full and my heart goes out to you. Our spouses both seem to be questioning why they are still with us - yours in physical pain and mine in emotional/mental pain. I told my spouse that we do not know or understand God’s plans for us, but that we must trust Him.

I will keep you and your husband in my prayers. I will check out the online group.

REPLY
1 reply
denise96 | @denise96 | Dec 30, 2024
In reply to @minniem "@denise96 - thank you for your reply. Today was a better day for us and I..." + (show)
@minniem

@denise96 - thank you for your reply. Today was a better day for us and I am using the Serenity Prayer - and looking at myself to have the courage to change things about myself.

CAA is associated with dementia. It’s kind of like: Dementia can encompass CAA but not all CAA is dementia.

I know you have your hands full and my heart goes out to you. Our spouses both seem to be questioning why they are still with us - yours in physical pain and mine in emotional/mental pain. I told my spouse that we do not know or understand God’s plans for us, but that we must trust Him.

I will keep you and your husband in my prayers. I will check out the online group.

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Good Morning. My husband is not having a good day. He has been throwing up everything he eats. He also hasn't slept in 3 nights. I have a call into the doctor so we will see what they have to say. I thought the vomiting would be gone by now because it has been 3 weeks since his last chemo treatment. He is due for his second treatment on Thursday this week. Prayers for all of us caregivers. Have a good day.

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