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nicumom2 10-20-2011 05:08 PM

End stages of COPD and Hospice
My 76 year old dad has COPD and is on oxygen 24/7. He also has congestive heart failure and his kidneys are failing. He has high blood pressure and is over weight. He has other things too...but these are the main health issues. His doctor said he is in the "end stages" of COPD. I don't know really what that means....I found out through a friend who works at a hospital that hospice will not come in to help your family unless the patient has 6 months or less to live...and you need a Dr. to sign an order that says so.
Well, my dads doctor will not sign this order and says he has more than 6 I'm confused. My mom doesnt' think my dad will live to see summer.
My mom is 75 and is about to have surgery soon...her surgery will require 6 weeks recovery. she can't get up to help my dad or check on my dad. He takes his face mask off 4x or more a night..and she gets up to put it back on him. I live out out state and can't be there 24/7...but I can go for a week or 2. We have small kids in school. I am trying to explore options with hospice or some other facility.
This is a long rambling post and for that I'm so sorry. I never thought I'd be online in a thread about death and dying. It's such a sad fact of life. :(

1eunice 10-21-2011 02:05 PM

Re: End stages of COPD and Hospice
Hello. I'm sorry to hear about your troubles, but I understand you very well. My husband is also end stage COPD. This spring it seemed that he was very close to death. He wanted to come back home to Spain (to die) so we came. It was an almost terrifying trip. But we made it. We've been here 4 months now. He's worse, but I don't really see the end coming soon. He can't stand or walk anymore, can't eat solid food, can't read, is confused a lot of the time, in diapers (naturally), but ..... no quality of life at all! Sometimes I am desperate because I'm American and gave up my teaching job to bring him here. I miss my daughter and grandchildren so much!!! And the hard part is not knowing how long this will last. On the other hand,I am lucky to be in Spain because the government provides so much support!!.... _At no cost, I have 2 and a half hours a day of help (to change him, bathe him, move him into the wheelchair for a little while, treat the bedsores), all medical care and medication; the nurse comes every week and the doctor whenever I call and ask her to come. Diapers are also covered at no cost. In your case, I would think your husband would qualify for hospice. From what I hear, hospice care is wonderful. Maybe you could consult with a different doctor who would authorize it. As far as knowing how long the end stage will last, I feel the same way... if I just knew how long this would go on I could deal with it so much better. Going through the end stage with no help is unimaginably hard. Good luck to you and I hope you can get hospice.

nicumom2 10-22-2011 02:12 PM

Re: End stages of COPD and Hospice
I'm sorry to hear about your husband. With my situation it is my father. I'm not there to help and have no clue how my mom will assist him while she is recovering for 6 weeks from surgery. I will suggest that they find a new doctor, but I don't think she will listen to me. I hope you find comfort and peace during this difficult time with your husband.

Librarabbit 10-25-2011 07:45 AM

Re: End stages of COPD and Hospice

Please have dad see another doctor. Or at least explain this to him (the doctor). With a diagnosis of end stage COPD Hospice WILL come in, no matter what. My mom's team has patients w/end stage COPD going on a year, even more; and they are not kicking them off. Hospice was the best thing for us. My mom (once she got used to the idea) even felt better having the nurse, aids and counselors come to her.

You could be involved in a power struggle w/dad's doctor because once the RN's get involved they (the nurses) talk to the doctor (and it still can be dad's doctor - and he can bill the Hospice account) with the family's approval, and set and change meds, treatments, etc... Perhaps dad's pulmonologist will call in the Hospice referral? My mom was 62 when she died. She was completely mobile until Easter Sunday of this year. She passed away the following Thursday. My mom was diagnosed with end stage COPD in February 2011. Her pulmonologist wanted to get her through the Christmas Holiday season with her family as she knew how much these days meant to her. So that meant she was hoping to give mom at least another 10 months. There is no 6 month timeline for end stage COPD patients with Hospice. Mom's pulmonologist called in the Hospice referral.

From my mom's experience she did not die because of breathing issues. She died of the symptoms caused by COPD. This is why Hospice is so beneficial. My mom began falling, hallucinating, going blind, not eating, loosing weight, and although Mom was living with me and my family we could not care for her 24/7. I'm assuming either will your mom be able to care for your dad. Call Hopsice yourself. Explain dad's diagnosis. They will come out.

Keep posting here. It helps with the mixed emotions.

nicumom2 10-27-2011 04:11 PM

Re: End stages of COPD and Hospice
Thank you for the suggestions. I did call their local hospice and they said they need the Dr. to sign a form. So I will need to talk to my mom more about it. It's so hard living in another state. If I were in town with them I feel like I could be of more help. Right now my dad seems to be himself when I call to talk. There have been the rare occassions when he is confused and asks strange things. Like one day he was standing over the sink and my mom asked him what he needed. He said he couldn't figure out how to get the ice out. But those times are rare. This long process is so hard. A friend told me her father just died of a heart attack and it was instant. Thought it's quite sad and most likely a huge shock for loved ones...least he didn't suffer. I still need to explore in-home health options. $20 an hour for a nurse will get very expensive - that seems to be the going rate. I dont' think they can afford that. I don't know - I'm still a bit overwhelmed. This is a wonderful place to get advice that's for sure. Thanks!

1eunice 10-28-2011 10:00 AM

Re: End stages of COPD and Hospice
My husband is also taking a long time to die.... just lying in bed. I feel that I have been grieving so long because the man I have loved for so long isn't here anymore. This sick man who hallucinated most of the time and even when he does make sense, it's not really sense. I'm completely alone 24 hours a day in terms of companionship. My brother and daughter think I should seriously start looking into a nursing home. I don't know. I said I wouldn't do that, but when you consider that even when he knows my name he's not really away of our lives together, then it makes more sense.

nicumom2 10-28-2011 10:25 AM

Re: End stages of COPD and Hospice
My dad is "himself" most of the day. I can call and talk to him about anything and we laugh about the same old things. He doesn't move around much due the the detiorated bones in the bottom of his feet - can't fix since he is inoperable. But he sits in his chair / lift / lazyboy most of the day and on nice days mom will put the portable oxygen tank on him and he'll sit outside - they have great neighbors and even teenagers will come and visit with him. It would break my heart to see him in a nursing home...I wish I could afford to give them a nurse around the clock but I can't afford that. I fear from other posts that he will get worse than he is now. And that sounds scary. I enjoy hearing the individual stores. Thank you so much for sharing, I wish the best for each of you and your families and that some how everyone can find peace.

Librarabbit 10-28-2011 06:00 PM

Re: End stages of COPD and Hospice

I am so sorry for the trying times that you are going through. The one thing my mother and grandmother taught me that I am extrememly grateful for is that life does go on. Sound heartless right? But they were so correct. I still had to go to work. Christmas for our 11 year old still needed to happen. The family vacation to Hawaii was still being planned. My grandmother's oldest saying was "people die to make room for the living." She passed 5 days after my daughter was born. My mom knew that her time was ending. She didn't like it, but could do nothing to prevent it. She made me go to work. She made my husband go to work. She made my daughter go to school. We all had obligations to fulfill despite her passing. She raised me this way. It wasn't foreign; we didn't leave anything unsaid or undone.

My point is: the worst part about this disease is that it take forever to kill a person. The patient languishes for so long. It's hard to watch day in and day out. We knew mom had COPD for the last 10 years, but it just really started affecting her day to day life the last 2. I know you always said you wouldn't put your husband in a nursing home, but you have to live too. If you have the means to do it, I would. I am not a nurse. I could not physically take care of my mom. I HAD to impart that on her Hospice nurses. There would have been no toilet assistance, bathing assistance, etc. I could not do it (my own OCD issues). I could cook, clean, feed, give manicures, pedicures, be chauffeur, but the hygenic things was not me. My mom knew that. We kept her at home as long I could. When it came down to "she needed 24 hour care," I had to make the decision to move my mom to inpatient Hospice. Everyone has their own limits. We do go on. Our lives will need to be lived. Under no circumstances should you feel bad for whatever decision you need to make for yourself.

But I do have to ask you, does your husband want to stick around? I mean, did he say he wanted to have all the medical intervention to keep him alive? Or does he want to pass on his own terms? I'm asking because a nursing home without Hospice care would have to keep him alive? Right? Look into that. A Hospice type situation will provide food, comfort meds, and support. But if he passes they will do nothing to stop it or reverse it. Not too sure about nursing homes where you live.

I hope you find peace. Don't forget to do for you too. Nails, hair, coffee, a good book; whatever gets you away from death at least for a little while. May tomorrow be happier for you.


flipfleury 12-01-2011 09:20 PM

Re: End stages of COPD and Hospice
Part of the problem with some doctors is that they can't let the patient go to hospice because they think they can still fix them or they can't come to grips themselves that there isn't any more they can do to help the patient. Get another opinon from a doctor who specializes in lung diseases.

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