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Old 01-29-2013, 12:30 PM   #1
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sarahdyt HB User
Mother had COPD

Hello. My mother, who was 61 years old passed away on January 20, 2013. This was both very unexpected and expected. About a year and a half ago, she was diagnosed with COPD as well as Diverticulitis. Years before that, she was diagnosed with Fybromyalgea. One of my reasons for posting here today was to ask what are the symptoms of COPD? I've done some research on it and the symptoms most websites give that I've found are kind of general. I was wondering if anyone else has experienced these symptoms? Her symptoms were: she lost her ability to walk (she could maybe take a few steps, but that was it), she would have hallucinations quite frequently, incoherent a lot, very fatigued and slept a lot, she had to wear diapers, she developed anxiety attacks, she had swelling in her feet, she also developed what looked to be large blisters that would appear on her ankles (happened only twice, before she died she showed me one that had burst open), she was on oxygen 24/7 and it was set to 5 at the end. She was also on a laundry list of medications like morphine, roxanol, dilaudid, and xanax to name a few. She had been on pain meds for over 10 years due to Fybromyalgea but started to take roxanol and dilaudid after she became very ill with the COPD. Unfortunately, her and I had been working on bringing her home from the nursing home she was in when she died. All she wanted to do was to come home because she did not like the nursing home, there were a lot of things they did wrong there including having her go days without some meds because nobody had ordered any. I'm still very deep in mourning her and I guess another reason for posting today is to hopefully get some comfort and know that I'm not alone in this. I thank anyone who takes the time to talk to me.

 
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Old 01-29-2013, 11:49 PM   #2
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copinginseattle HB User
Re: Mother had COPD

Quote:
Originally Posted by sarahdyt View Post
Her symptoms were: she lost her ability to walk (she could maybe take a few steps, but that was it), she would have hallucinations quite frequently, incoherent a lot, very fatigued and slept a lot, she had to wear diapers, she developed anxiety attacks, she had swelling in her feet, she also developed what looked to be large blisters that would appear on her ankles (happened only twice, before she died she showed me one that had burst open), she was on oxygen 24/7 and it was set to 5 at the end. She was also on a laundry list of medications like morphine, roxanol, dilaudid, and xanax to name a few. .
I am so sorry for your loss. I hope you are coping, and will accept my internet hug. My mother has COPD and she is in the hospital now (again). She has episodes of hospital then assisted care facility then back home. The time between episodes is getting shorter and this time the hospital is pressuring us to seek hospice care to 'make her comfortable' as they try to prepare us for the inevitable.

It is difficult to say what exactly are symptoms of COPD and what are 'associated' with COPD. Some of the symptoms you listed are due to the morphine or other opiate pain meds -- hallucinations, incoherency, sleeping a lot. Some of the symptoms you listed are side effects to a lifestyle of not being able to move around and poor circulation -- swollen feet, difficulty walking. But in the long run they all result from being inflicted with COPD and the lifestyle and medications that are associated with it.

I would love to hear any advice you have for coping with the final days with her. I am heartbroken and a complete mess at the understanding that she is dying.

 
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Old 01-30-2013, 03:47 PM   #3
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sarahdyt HB User
Re: Mother had COPD

Thank you for your reply. Yes, it is hard dealing with someone who has COPD. Basically being helpless, and having to watch the distress your mom goes through. It's been a long journey for me, and I've still got a lot to go through as you will. I'm sorry that you're experiencing this, it is tough. With my mom, we never really focused on her illness, we kind of coped with it. She would have really good days, and then not so good days. Cherish the moments that you have and spend as much time as you can. My mom's health declined rather quickly and we never really knew exactly how much time we had left with her. It's hard to say with COPD, it's not like Cancer. And it is okay to be heartbroken and a mess with this, you are not alone. My best advice for you with the whole hospice situation is to go with what you feel is right and best for your mom. My mom was in hospice for a while before they transferred to the nursing home and hospice is a great place. Discuss what your mom would like also. I always made sure I knew how my mom felt about everything concerning her. I hope this has helped you!

 
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Old 05-08-2013, 11:46 AM   #4
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ayk1 HB User
Unhappy Re: Mother had COPD

Quote:
Originally Posted by copinginseattle View Post
I am so sorry for your loss. I hope you are coping, and will accept my internet hug. My mother has COPD and she is in the hospital now (again). She has episodes of hospital then assisted care facility then back home. The time between episodes is getting shorter and this time the hospital is pressuring us to seek hospice care to 'make her comfortable' as they try to prepare us for the inevitable.

It is difficult to say what exactly are symptoms of COPD and what are 'associated' with COPD. Some of the symptoms you listed are due to the morphine or other opiate pain meds -- hallucinations, incoherency, sleeping a lot. Some of the symptoms you listed are side effects to a lifestyle of not being able to move around and poor circulation -- swollen feet, difficulty walking. But in the long run they all result from being inflicted with COPD and the lifestyle and medications that are associated with it.

I would love to hear any advice you have for coping with the final days with her. I am heartbroken and a complete mess at the understanding that she is dying.
Hello to both of you,

I actually joined this forum because I wanted to get in touch with copinginseattle. I saw that you posted that your mother had COPD and so I wanted to someone to share stories with. I, myself am heartbroken and a complete mess because my father has COPD and lung cancer. He is currently hospitalized and nearly died a few days ago while I was away on vacation. He is now in the hospital and I found out last night he signed a DNR (Do Not Resuscitate) agreement with the hospital. I am only 25 years old and I am still studying in university. His situation is quite different because he did not have medical coverage for a long time because of his residency/immigration problems and I have had to fight for that and eventually we got proper care for him only recently. I am very scared at this moment at the fact that I could lose my dad any day now. He is on oxygen 24/7, can barely walk a few steps, and is always fatigued and depressed. I have always been strong, independent, and like to be in control of situations so this has really affected my life because seeing him so sick has completely torn me apart. I just don't know what to do and feel extremely helpless.

 
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Old 05-11-2013, 05:59 PM   #5
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copinginseattle HB User
Re: Mother had COPD

Quote:
Originally Posted by ayk1 View Post
Hello to both of you,

I have always been strong, independent, and like to be in control of situations so this has really affected my life because seeing him so sick has completely torn me apart. I just don't know what to do and feel extremely helpless.
Big {{hugs}} to you.

This is such a difficult thing to go through, especially for someone so young. I wish I could tell you how to get through it with the least amount of damage to your soul but I am still struggling with it, myself. What I can share is what is helping "me" get through it and it may or may not be the right path for you. I am quiet. I have found a quiet, introspective place in my head where I go when my mind is racing for answers, and I remind myself that I can't "fix" this and that I have no other option than to "accept" it. I literally have to shut down all other emotions and work hard to stay focused on acceptance.

Try that. I hope it helps.

You might also want to join some counseling groups. Check with the insurance that your dad is on... if it is Medicaid then they can help you get family counseling to learn how to cope, and to help you understand the process of losing your dad.

I read something somewhere that is helping me to help my mom through the process... this isn't an exact quote...

Try and let the person dying know that their life mattered. That they made a difference, and will be remembered. Let them dream about "getting better" if that helps them find peace. Let them know that everything is taken care of and that it is okay for them to go, that you will be okay.

...
So I try that approach now. I try to give my mom as much peace as I can and let her know that she had a great life and that it mattered and that she made a difference in this world. I carry the burdon of "what will happen when I am gone" and let her know that I will take care of everything. She doesn't need to worry.

So in that regard... while you may not agree with your dad's decision for the DNR, he should know that it will be alright if the time comes. That you accept his decision and support his choice.

You are still strong and independent but you are learning that you are vulnerable, too. Your strength will get you through this even if it feels like the world is crashing down around you. You can tell your dad what a great job he has done raising you and that while it hurts so much now you know that you will do him proud after he passes. And you will have a full wonderful life and pass on his values to a family of your own. I'm sure he would love to dream that dream with you.

 
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