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Old 10-02-2011, 03:53 AM   #1
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1eunice HB User
end stage COPD

My husband is in end stage COPD. Over the summer he has just gone downhill. He has lost so much muscle mass that he cannot stand up. He has to be carried to a chair and deposited. He wears diapers because it's impossible to get him to a toilet. His mind is sometimes clear and sometimes not. He sleeps many hours during the day. He's lost all interest in anybody except himself. He never asks how I am, or how anybody else is. That just doesn't seem relevant to him anymore. When he talks it's just to give orders and never includes a please or thank you. This is not the man I used to know. He used to be an avid reader. Now he doesn't seem to be able to sort out text at all.... in other words, he can't read. His O2 level stays at 95 without oxygen. He doesn't seem to be in crisis of any sort. His blood pressure is fine. I can't understand what is going on. Has anyone had a similar experience with COPD?

Last edited by 1eunice; 10-02-2011 at 03:55 AM. Reason: typed CODP instead of COPD

 
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Old 10-02-2011, 05:27 AM   #2
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Re: end stage COPD

1eunice,

So sorry to hear about your husband. I just went through this with my mom. She was told she was end stage COPD in February and I lost her at the end of April. Try to get the booklet from Hospice called, "Gone from my Sight." It really does answer most of your concerns you addressed in your post. What I found out is this, that they are not trying to be "rude." Unconsciously the dying are turning inward to sort out their own end of life issues. We lived with my mom and really the last 6-8 months of her life she spent in her bedroom. Occassionally (maybe once a week) she'd eat dinner with us at the table which was not like her because "dinner was taken at the table," even if it was McDonalds. Her depression deepened and her moods were a roller coaster, but mostly irritable. My mom also went through the different stages of grieving as well. She was grieving her own upcoming death and had to work through all of that as well. I was truly grateful to get my hands on the booklet because it helped me understand that they too have a process to go through. As hard as it is on us, knowing that they will be leaving, they don't really want to go either; not until they make peace with it. I was lucky to have mom completely mobile until the last 4 days of her life. She was on oxygen 24/7 but what was killing her was the right sided heart failure associated w/COPD. Her heart was working so hard to push the O2 through her blood that it was giving out. Perhaps Hospice may be of help to you? It's odd but with a diagnosis of COPD they come in a lot sooner for longer than the typical 6 months beforehand. Because it is such a crazy and terminal diagnosis they can be very useful to the caregivers. I think I really relied upon them more than my mom.

Keep posting here. I found out that writing about what I was going through here to total strangers really did help. I have family and friends yes, but complaining to them made me feel guilty. We do not judge, we all just listen and give advise where we think appropriate.

Good luck to you. May you find peace enough to get through this.

Librarabbit

 
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Old 10-02-2011, 08:49 AM   #3
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Re: end stage COPD

Thanks so much for your post in answer to mine. It really did help. I'm in Spain so don't know if I can get a copy of that booklet, but I will try.
God bless!

 
Old 10-02-2011, 01:17 PM   #4
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Re: end stage COPD

I literally started crying like a baby when i read your post. I do know what you are going through i went through the same thing with my mom. Let me say to PLEASE even though your feelings are getting hurt on a regular basis just imagine how he feels knowing he is going to losing all of his loved ones in a short period of time and there is NO way he wants to do that. I don't want you to think i am saying he is being "intentionally mean" but he has to go before he wants to and suffer in the meantime while he is still here so maybe he feels his actions are appropriate for him at this time. I am SOOO sorry that everything is so hard on you too because it's not like you want him to go.I lived with my mom until the moment she took her last breath ans yes it was hard i would NOT trade being there for anything. Then 2 years ago my dad was diagnosed with stage 4 melanoma and i moved in with him and took care of him for the last 6 months of his life. I was there when he took his last breath and i would not have that any other way either. What i found out from taking care of my mom AND my dad is there is alot more bad days than good but PLEASE try to enjoy just being with them.My dad was alot harder to be with i don't know if it was the "man" thing or what but i hung in there and i am SOOOOO VERY thankful that i did. I hope i helped you some and please write to me anytime i will write you back. There are a tremendous amount of great people that use this board so please reach out to us i promise you we are all here for each other. Until next time TAKE CARE and i hope to hear from you soon.

 
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1eunice (10-02-2011)
Old 10-02-2011, 02:07 PM   #5
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friday49 HB Userfriday49 HB User
Re: end stage COPD

With his oxygen that high and him sleeping so much, it sounds to me like he is retaining carbon dioxide. I don't know anything about end stage, but maybe his oxygen is too high. Unless he has decided to die.

 
Old 10-03-2011, 10:06 AM   #6
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Re: end stage COPD

Actually, I have been wondering about the carbon dioxide aspect myself. Thanks for writing.

 
Old 10-03-2011, 11:42 AM   #7
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friday49 HB Userfriday49 HB User
Re: end stage COPD

Yes, but perhaps that is what end stage entails. I don't know. I have severe COPD and I know that if I don't exercise it gets harder and harder to walk around. And I too am finding myself sleeping more. Good luck to you both.

 
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