Severe COPDN NJ

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Hi i new to this forum but i hope you can help. My sister has severe Copd.

It seems to run in our family. She has a fobia of Doctors and Hospitals so wont get help. Her hands turn blue and lips. She cant do the simplist things. Her breathing is terrible. She says if i get her a doctor she will die of shock. And then says do i want to be responsible for her death. I am at a loss as what to do to help her. Can i at least get her some oxygen to breath without going through a doctor ? I fear this will be her last christmas . I have given her heaters to use to keep warm but will only put them on when it is below freezing. I have offered money to pay for electric , but she refuses. What can i do ? Thanks

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  • Posted

    Hi,

     I too  have COPD and a phobia of doctors and hospitals but I'm not as ill as your sister seems to be.  My daughter contacted the local hospital and found out that there is a "Rocket Team" where nurses who specialise in this, come to your home and can provide everything you need. If you make enquiries in your area you may find some help.  Would your sister allow this?  Other than that, I can't see that you can help her which is a dreadful worry for you I know but you can only try.

    Good luck and bless you.

     

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    • Posted

      Hi Deanne , I have suggested that i would get a doctor to see her at home with me there . She will,not allow it. I dont know where the fear comes from. I am hoping as time goes by she will be so fed up that I can get her some help. But the damage is on going. She tells me her lungs fill with water, i cant imagine what that feels like. But not pleasant. I will mention

      The Rocket Team. Thank you so much for your reply x

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    • Posted

      Sandra, don't promise anything you can't deliver, and in our country the only thing you can promise is that EMS usually comes quickly when they've been told that someone is turning blue. Even then, if it's Friday or Saturday night, or rush hour any day, or if one lives in as bad & poor an area as mine (used to be), there are no guarantees.

      As everyone is telling you indirectly, I'll now say it directly:

      There's a lot of dysfunction going on between you and your sister. You may want to learn some detachment. The one quickest & only free way I know of to learn that here in the States is by going to Al Anon. If your sister is addicted to nothing else, she is addicted to this drama she's got going on with you. If you don't believe in any Higher Power, find an agnostic or atheist Al Anon meeting.

      Detachment does not mean loving less. Part of what it means is learning boundaries. As with all addicts & their loved ones, there are currently NO boundaries between you 2. You going to Al Anon will not fix your sister but if you work at it it can help you deal with her & with the boatload of feelings you have for her & her situation.

      You are on a fabulous United Kingdom support site. The only problem with that is that their health system is much more proactive for folks with lung issues. Don't get your heart set on getting all the kinds of help people mention. This is the Good Old US of A, and we don't believe in that stuff - and if we did, Trump will soon dismantle any improvements made in the last 8 years.

      (Yes, I absolutely believe in the UK health system over ours and have formore than 40 years.)

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  • Posted

    Not a lot unfortunately.  You can lead a horse to water but you can't make it drink. 

    You sound like a lovely,  caring sister and she is very lucky to have you.  

    Has she never ever seen a doctor for anything?  Or been in hospital?  Do you know where her fear of them comes from?    Does she have any other relatives/friends who can talk to her as well?  

    I am afraid you won't be able to get her oxygen without going through a doctor as she would have to be investigated as to whether she needs it or how much.  Having too much oxygen is very dangerous as this can lead to CO2 retention so she would need evaluating before oxygen could be prescribed. 

    I do wonder how she knows she has copd without ever seeing a doctor?  It is the most common of the lung diseases but there are many others and this would need to be investigated.  There are lots of treatments available and getting help and the proper meds would make her feel a lot better.  

    I really don't have any answers to this but I am sure others will be in soon to offer their advice and support.  I really feel for you as you are in an impossible situation.   x

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    • Posted

      Hi Hypercat, MY sister doesnt believe she has anything wrong with her but a stubborn virus. But the place she has worked in for the last forty years is a public place , where many people smoked . Up untill the law changed. As many as a hundred people smoking. Over the years she has had many colds chest infections and viruses. But never gone to the doctors. I think had she taken antibiotics on occassion her lungs wouldnt be so bad. Her chest gets so tight she cant breathe. She finds breathing in difficult and never feels like enough air goes in.

      She coughs up a lot of white green and bright yellow sputum.

      It takes her between an hour and two hours to get out of bed.

      This is because she cant breathe and is exhausted . The simplest things take so long. She cant walk to the bus stop to get a bus because it takes it out of her. So i take her shopping . It is hard to watch her struggle to breathe. My brother has bronchitis and lives with me and my family. I think i have early stage COPD. When i have had colds and coughs i have been really breathless and coughed up sputum too. I will get checked out. Thank you for your reply x

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  • Posted

    Hi Sandra

    No, you can't get oxygen without a doctor's order. You and your sister are in a terrible dance. My best suggestion is that you go outside and call 911 next time she turns blue. Don't tell her that you've done it. She can refuse their help, but afterwards you can point out that she didn't die from proximity to medical workers.

    You don't mention how old she is. She may be eligible for government money to pay her utilities. I'm on that program. It's fed money but is administered here by the county, which makes payment directly to the utility. There are other programs and then there are churches, but most of these are one-time assistance every 6-12 months. If she's long-term low-income, utility assistance in some a good way to go.

    Bottom line is that your sister has to want to get better. You cannot save her any more than you could save her if she were a substance abuser. If she won't get counseling, you may want some.

    "Rocket teams" exist in UK medicine but not here in the States. Calling EMS without her or anyone else knowing about it is pretty much your only option.

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  • Posted

    Mmmmmm  A diagnosis of severe COPD would have involved contact with a medical professional, GP, respiratory nurse, specialising respiratory consultant etc.

    No oxygen without prescription, in UK oxygen is not prescribed unless patient needs it, the need is determined by an arteriel blood gas test and proper evaluation, taking oxygen when not prescribed can be just as harmful as not taking oxygen when it is prescribed.

    My reply to your sister regarding her statement about you getting a doctor 'she will die of shock, and do you want to be responsible for her death.'  would be....

    Shock by getting a doctor would be the least likely cause of her death, it would be a more pleasant way to go in comparison to the other likely causes of death through not getting help, such as hyperthermia, oxygen deprivation* (if needed) or cardiac arrest*, (*blue discolouration) , lung infection developing into pneumonia, suffocation not able to breathe, drowning with fluid on the lungs, lung collapse, all these are much more unpleasant and painful.  So I would personally disregard your sisters mental health issue, go ahead and get medical help. 

    Some links below for support and information that may be of help:

    https://patient.info/health/sources-of-nhs-help-when-unwell

    https://www.blf.org.uk/

    https://patient.info/health/phobias

    http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx

    if you are not living in the UK you will need to approach the organisations in the country you reside.

     

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  • Posted

    Must be a really bad phobia if she wont see a doctor when she is that bad I mean why not ease the pain she is going thro, i know i couldnt. Seems hard on you tho to get told you would be resposible for her death No she will by not getting help and it is not fair on you to have to see her suffer because of her choices when she could get help There is nothing you can do until she wants the help so it is up to your sister, and let her know you cant be part of it as it is making you ill so until she is willing to get help you cant be around her.
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