How to know when the end is near

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my mom has end stage copd and is 84 and is on hospice. How do I tell when the end is near

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  • Posted

    Hi I am so sorry to hear about your poor mum,  this must be devastating for you.  I think the best thing to do is ask the medical staff their opinion as they are the experts. 

    A lot depends on whether she is in the hospice for a rest,  or isn't expected to be well enough to leave.   If the former then palliative care is often and it doesn't mean the end of her life necessarily.  If the latter I don't know.  Take care and thinking of you.  x

    • Posted

      Thank you she's been on hospice for 4 months  and she sleeps a lot and wakes up very confused and talks to relatives that are gone . She's mostly confined to bed . She has heart issues too. 

    • Posted

      Am sad to report my mom passed on thanksgiving weekend. 8 months on hospice
  • Posted

    Denise, I am very, very sorry that you have this worry. Pulmonary Fibrosis is a particularly relentless way to go. I know as I lost my wife to it this last January. I can tell you something that may help you a little. The end can be very sudden and unexpected, but very peaceful, because the heart is under tremendous strain all the time, and can often just fail. From one instant to the next, she can be talking, then gone, just like that.

    if you really, really feel you need to know, and If you can tell me a little detail, if I can relate it to my wife's last stages, I might be able to hazard a guess. 

    Is your mother on oxygen? If so, how many hours a day?  Is she very underweight? Is she eating at all, and if so, is there any special protein being given, such as Fortisip drinks? Is she on any medication like Ventolin, Symbicort, Breezehaler, and especially Steroids?  If the staff are regularly taking blood oxygen levels, blood pressure and heart rate, do you know what they are on average?

    • Posted

      Go hall, 

      yes thank you for helping the reason I want to know is I take care of her alone, I'm beat, I still work full time waiting to take my family leave. She is in oxegyn full time 24 hours 3 liters. She is not underweighted and still eats . Medication is pulmicort by nebulizer twice a day which she doesn't take a lot or throws out in the trash.blood oxegyn levels vary but blood pressure is on good side. Sorry about your wife how old was she if I may ask? 

    • Posted

      My wife was 76 coming up 77 when she passed. I think you are referring to hospice care at home rather than in a hospice, am I right? It is confusing. 

      That means residential palliative care. That was exactly what my wife had, and actually preferred; she died at home. We had nurses twice a week for only a short time, to deal with bed sores due to sitting in a chair all the time. I turned out to be more capable of dealing with her care than they were.  When they said 'you are doing ok, and we are not coming again', I blew a fuse, simply because having someone else to check on my wife was a relief of sorts. As the last one left, she told me, referring to my wife, 'I dont think she is as bad as she thinks she is'. My wife died about 10 days later, so you see how much use they are, and how unreliable an estimate you might get from even experienced nurses.

      I know exactly where you are coming from, and you should press very hard for what is termed 'respite care' when your mother can go into a proper hospice for maybe a week or two, giving you the respite, not your mother.

      If she is not on steroids, is not underweight, and is eating then I would say she could easily last 6 months or even more, but could die tomorrow. As I already said, it is likely she will not die of being unable to breathe, her heart will simply fail very suddenly. Be careful of visitors, you must try to avoid any chest infection, which could lead to a collapsed lung at worst (happened twice to my wife).

      That is the best I can offer you, apart from my very best wishes and if you have any questions, I will be very happy to help however I can.

    • Posted

      Yes it's hospice at home and 2 nurses twice a week only for a couple of mins. One nurse who mind u is an run says she's doing great. And the other on who is an Lin says the truth . All that you have said. Respite would be great but she won't go. She fights me on every subject. She wakes up every other day very confused about where she is. 

    • Posted

      I am sorry for your loss. I'm just trying to know as much as I can now. Did your wife smoke? My mom never smoked and ended up with copd . Asthma all her life though

    • Posted

      Yes, she did smoke up to her last 5 years, mentholated and mild cigs. She always claimed it had nothing to do with PF. I could not really disagree, because the diagnosis is usually idiopathic PF meaning 'of unknown orgin'. It is most probably an auto-imune disease, and that in turn could be some unfortunate people whose lungs turn against being continually inflamed. Smoking, obviously yes, but asthma yes, too. The latest thinking also implicates microscopic diesel particles in the air. That would account for why the incidence is increasing throughout the world, despite ruling out better diagnosis, and people living longer in general. It correlates well with more diesel engines.

      Sorry to say your mothers confusion could be CO2 poisoning, has anyone checked for that ? Too much oxygen combined with low gas clearance from the lungs means too much CO2 in the blood. You should get the possibility checked out, such a simple things as lower oxygen rate when asleep might work wonders, but take expert advice on that.

      Can you explain the contradiction in your statements that you are sole carer, but you also work full-time. If this means your mother can do at least a minimum for herself, then she must be about how my wife was with 6 months to go.

    • Posted

      I work like 2 miles from home and come home for lunch she only gets up to go to the bathroom and sometimes to the kitchen for a drink. She can barely walk and her feet are alwats swolen . She also has taken to drinking wine which she,says makes her feel better. What about talking to deceased relatives and sleeping all the time? The other day she was singing. So unlike her
    • Posted

      The symptoms of Carbon dioxide poisoning are similar to dementia. Unfortunately the test is a painful search for an artery in the wrist, not a simple vein. Swollen feet is heart and circulation failing. Loop diruretics like furosimide can help the water retention, and possibly perindopril to help the heart. Drinking wine is not generally any problem, it is a bit diuretic itself after all, and if it cheers her up.....we knew old ladies who practically lived on whisky.....into the nineties even.

       

    • Posted

      I do believe you about the carbon dioxside poisening and im thinking of turning it down to 2 to see if theres a difference .
    • Posted

      I'm not a doctor, you really should double check with a pulmonary specialist, but even so, my wife was not given much advice about oxygen treatment, and when we asked at the appropriate clinic we would get contradictory advice. So trial and (not too much) error may be as good. My wife would say if the oxygen was too high, it would give her a headache, and if too low, she would feel a need for it. Some posters here say if red in the face and with purple lips, as well as confused, that could be Co2 (acidosis in other words).

      As I said, arterial blood gas measurement is the only real way to tell, and you generally have to attend clinic in person for that. We kicked up a bit eventually and a specialist nurse came to our house and checked the Co2 eventually.

      To be honest, if you can access Pulmonary Rehabilitation you will probably get the best, most experienced help and advice, but that may not be easy, even not possible, especially in your own case.

      It is often necessary to be polite, but very demanding and firm with the health people these days. Some don't mind, some do.

  • Posted

    Personally I jus found out I'm on stage 2,So I'm jus learning,If anyone knows what to expect during the next few years to the end ,I would really appreciate it, How long? What r the signs,n symptoms? Jus what to expect in the next few years n How long do I have? DOES ANYONE KNOW?

    • Posted

      Its such a hard thing nobody in the industry will tell you o dont know how old you are and what health problems you have but my mom is 84 and has stage 4 and has been in stage 4 for over 2 years so id say you have quite a while.do you have scaring tisdue on the lungs like pumanary fibrosis from asthma.?
    • Posted

      try to find the nice 36 page booklet called 'breathing matters', which has a title breathingmatters.pdf  (notice no space), and is found in http: // www . berkshirehealthcare . nhs . uk / _store

      (I have left spaces where you must not, because otherwise my post will not appear as links are frowned on).

      You might also try search for 'SPR727 COPD leaflet'

      Basically at stage 2 that is moderate, and you could go on for ages, if you ---- DONT SMOKE.  EAT WELL.   EXERCISE A LOT.   AVOID INFECTIONS

    • Posted

      Hi do you have copd?   If so even at stage 2 you will go on for a long while yet.   It might not progress much further for the rest of your life if you look after yourself and deal promptly with any exacerbations.

      I am just in stage 2 with a lung function of 74%.  I am 62 now and was diagnosed about 8 years ago.  I am still the same as at diagnosis so mine hasn't progressed at all in that time.  The doctor told me something else would get me first ie old age! 

      A lot depends on your lung function at diagnosis and also your age.  I have online friends who are in the severe or very severe category and have been there for many years. 

      If I had to have a lung disease I am very glad I have copd and not one of the real nasties like pulmunory fibrosis etc as they tend to progress a lot faster.  

      Just get on with living your life and don't worry about copd killing you is my advice.  x

    • Posted

      Wow! 2 years on Stage 4 that's good but prob not good for ur mom,Is suffering real bad,like her breathing is harder n coughing her head off?

    • Posted

      IM at 57% Stage 2 COPD, It's jus kinda of scary,But I'm more bad at myself for starting to smoke over 40 years ago! Especially smoking Menthol for 30+ years,Which I have been told that Menthol is worse,Does anyone know different?

    • Posted

      Nothing can be proven that mentholated cigs are, by their nature, more damaging, so dont beat yourself up about that !! They are, however, statistically associated with much more damaging effects, but that is more due to the different smokers behaviour they tend to encourage.

      1. Taste nicer, so people start younger therefore smoke for more years. 

      2. Smell less and 'seem cleaner' so people feel less guilty about smoking and end up smoking in more quantity than other cigs.

      3. Probably act in the lungs as a slight anaesthetic, so slows or prevents the lung's natural action to clear themselves of phlem and harmful deposits, so in the end more infection and accumulation of tars etc that you get from all cigs.

      Like all cigs, if they were invented today, they would be instantly banned as intolerably dangerous products.

    • Posted

      Oh I agree they would b banned,But in my day,No one said much....About smoking a cig or a pipe! They definitely calm ur nerves!They didn't have preservatives n crap that have today n I smoked the skinny little capris !

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