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COPD and mom

Posted , 12 users are following.

jackie03510
jackie03510

Hi, my name is Jackie

I have knowledge of COPD as I have taken my mom in to live with me and she has severe COPD.   I would like to share my experience with my mom and her condition with you all and hope you may find encouragement and or information.  Also, I have read some of your discussions and think it may help me with mom and thank you in advance for this. 

Mom has lived with me now for 2 and a half years and she has severe COPD among other major illnesses like Cancer in her right lung.  Although her cancer has not grown in the time she has been with me, her COPD has worsened from unit 3 oxygen to 5.  The docs say it will probably be the COPD that kills her first even though this is her second time with lung cancer. Mom has been on Oxygen for 11 year now as it started when she took Congestive Heart Failure all those years ago.  We do not believe she should have been put on oxygen then but the docs at the time did not do extensive tests then and did not seem to think it was necessary I guess.  They were wrong.  Tests should always be done before giving someone medicine of a potentially long term nature as we learned later in years, actually, in  2013 for mom.  As it was,  mom was not even put on the correct Puffers or medicines for her condition and this could have actually made her condition worse.  The experiences I would like to tell you about right now is her memory loss, both short and long term.  With her memory losses she has changed.  This condition with mom has been getting worse with her oxygen rising as her COPD worsens.  Mom was a seriously dedicated smoker since she was about 17 years of age and actually started smoking at 14.   I have done a lot of reading to find out as much as possible and found this site.  I have been seeing that some of you have mentioned different types of Medication for your COPD and am now wondering if I have the right meds for mom.  Our doc just put her on new stuff called BREO and SeaBri which he only just replaced a few days ago and continues to take the Subutamol.  Mom was on Spiriva and Advair but the doc said the SeaBri and Breo was the newest med on the market and of course I am hoping he's not just selling for a company.  I am wondering What more you may know of this debilitating disease as I am watching my mother die slowly and it is scaring me.  As I have said her memory is bad and I cannot tell you how hard it is to help her.  Her mind plays nasty tricks on her and it is not easy living with her at all.  I have so much to say on this subject and hope to discuss further here.  Thank you

1 like, 30 replies

30 Replies

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  • ladyjack51
    ladyjack51 jackie03510

    Posted

    Hi Jackie03510,

    I'm glad that you found this site as well bc I think it can be very therapeutic to write down what b you are thinking and feeling especially going thru what we are all going thru...and I really feel for you and your situation with your mom. There you are taking care of her, while she has mood swings and due to bouts of dementia that insult you and hurt you. I know you don't want your mom to go...but no one can blame you if there are times you just wish it would end. It sounds like you have had childhood issues unresolved with her as well so that compounds the emotions even more. I'm praying for you sweetie...I just want you to know that. You have been on my mind. You are entitled to ALL your feelings...good or bad...just keep writing them down and talking to us...or someone for sure. It is a release for you.

  • virginia8
    virginia8 jackie03510

    Posted

    I read on a site which I cant find again that the end game is signalled by anorexia and purse breathing also when things get very bad and stressful morphine eases the discomfort of breathing difficulties so hopefully the end could be quite peaceful. I have COPD and do everything I can to live as long as possible.I use a powerlung,takeCell food, do pulmanary excercises at least once a day,take antifungacidal supplements and medication,try to stand up as much as possible so my lungs have got more room and walk my beloved little dog at least a mile every afternoon(I know she is the reason why I fight so hard)

    I am very keen to try DMSO and collodial silver,the trouble is one becomes too frightened to stop doing stuff once you have started so my staying reasonably stable takes all day(I am on 2ltrs oxygen for 16 hours) You are a saint,my parting thought is my lovely mummy was very sick the big C and she had had enough but we wouldn't let her go eventually she was in hospital to give my dad a rest contracted a chest bug and against all advice lay flat and we were forced to say goodbye

    • jude65855
      jude65855 virginia8

      Posted

      Your last sentence has made me feel quite ill, as that is EXACTLY the fate I fear:  being kept alive against my will.  I've put my specific wishes in writing for my gp and specialists, all hospitals in my area and my daughter and discussed them with her.    If she "wouldn't let me go" when I'd "had enough" she knows how angry I'd be - do you realise how cruel that sounds?

      Anyway, if I can help it I don't intend to hang around for end stage COPD:  I don't see the point of being alive if I have no breath to eat, drink or talk and I can't move.   Morphine would help you drift off happily, it's in the same drug family as heroin, but it isn't a magic wand for end of life pain relief.   

      What's DMSO?   Colloidal silver has been researched intensively and found to be no more effective than a placebo, but it's your money .... just don't use it to replace real medication

      I too do every pulmonary exercise I can find most days and walk my dog;  eat well and use my Spiriva and Symbicort - to the exent that my lung function hasn't deteriorated below the 70% I was originally diagnosed with 3 years ago.    

      Rehab was the best thing I ever did, not only for the specific exercises but for the knowledge that the condition is manageable if not curable but because I learned to be self-aware and slow down when appropriate. 

    • Nanny1086
      Nanny1086 jude65855

      Posted

      Love your last paragraph ,,,, as for the other ,,,,I. Not sure ,,,I also don't want life support machines etc ,,,,,but if I can hold a conversation and feed myself and keep myself clean ,,I consider that ok with me ,,,, I have put my feelings on paper and given them to my daughter to read only if that situation changes ,and I become reliable on others ,,,  here's to us all good health  
    • jude65855
      jude65855 Nanny1086

      Posted

      That's fine, I think we're saying the same thing, I'm talking about REAL end stage.   

      Where I live the health network has a program to help people write down their wishes clearly and in a way which will be accepted by hospitals and doctors:  in the rare cases where the patient's wishes aren't followed, my daughter could call them in to advocate for me on the basis of what I've recorded in the appropriate legal way.

      I'm just hoping that by the time I get to that point voluntary euthenasia will be legal:  my life, my right to end it when I decide

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