Aadvice or experience - recovery from chest infection in advanced secere end stage?

Discussion in 'End of life care' started by lemonjuice, Aug 23, 2017.

  1. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #1 lemonjuice, Aug 23, 2017
    Last edited: Aug 24, 2017
    Anyone had experience of what i could expect?

    Apologies for the length of this post. I'm very confused and not thnking straight.

    My scenario is that about a fortnight ago my mother had some 'breathing difficulties'. As usual they 'resolved ' themselves within a few hours. Then about 11 days later a seizure during feeding, for which she had 'suction' then 3 days later fever and 'rattly'- breathing during which she was coughing and going blue in the face.

    At this stage I just wanted it all to be over for her watchng her like that. By the time the Dr arrived, although still a bit laboured in her breathing her fever had resolved itself and the Dr asked how we should proceed. I knew exactly what my mother would have wanted and asked for comfort measures only, saying if she fights this on her own at least we would know what she wanted herself.

    So she was prescribed something to help with the secretions only and 'let things be'.

    24 hours later, her symptoms seemed 'better' and the Home assured me she wasn't in any pain and would have to start feeding again. Plus I'd called out the CHC woman for a Fast Track application, which she informed me that that wasn't appropriate in my mother's case as her deterioration had been slow and steady over the past 2/3 years and a downturn was to be expected. To qualify for a downturn it would have had to be much more rapid.. Honestly my mother is so far down the path that the only rapid downturn now would be sudden death. :confused:
    When I pointed out that surely my mother was at the final stage and within the final 6 months, she said they couldn't say that, as my mother has been here so often during the past few years and recovered.

    So I backtrack . I started to feell bad about our initial decison. It seemed my mother wanted to fight, it so how could I deny her some help? S0 I go and ask the Matron to contact the Dr and change her medication to allow the antibiotics .

    But I am well aware I have condemned my mother to more pain and suffering as she will almost certainly have more tias and seizures over the next few months/years. And more aspiration episodes, as her swallowing is severely compromised, although some days better than others the swallowing is not going to improve with the medication and will lead to further episodes.
    We both saw this with my mother's sister who likewise had so many 'emergency events' before that final one, lasting 6 years.
    I have condemned her to many, many more days staring at the ceiling /wall until someone comes to turn her. Her bedsores could get infected and cause more pain. She will have to be constantly 'encouraged' to swallow. (And have you ever read about some of the ways they are allowed to do that. Some sound like pure torture. :eek:) etc etc.) See how into overdrive my brain is?;)

    I am an only child and her only advocate. I know what my mother would have said and in fact did say in the past on witnessing her sister's state, but how do I make decisons now on behalf of someone I now realize is little more than a stranger to me and obviously cannot communicate her wishes herself?

    I feel in such a quandary.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    9,899
    Female
    South coast
    Hello lemonjuice.

    I think this sort of thing is quite common when dementia reaches the advanced stages.
    My mum had pneumonia in Jan 16 and everyone thought she would not survive. The doctors talked about making her comfortable and I truly though it was the end. Then she started to recover, started eating again and was sent back to her care home. She survived a stroke later on in the year too. I made the decision that oral antibiotics could be given, but I didnt want any heroic measures to preserve life, so I filled in a DNR form and directive saying no IV antibiotics. She got several UTIs/chest infections , but all responded to oral antibiotics. She also got oral thrush which responded to treatment. She eventually passed away in April this year following a fall and fractured hip

    Its an emotional rollercoaster isnt it?
     
  3. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #3 lemonjuice, Aug 24, 2017
    Last edited: Aug 24, 2017
    Thank you so much for the reply canary. I don't suppose you can know how much that means, especially seeing how many 'views' there were without a single reply.

    You were 'fortunate' (not really a suitable word but there doesn't seem to be another one?) in that it was only 4 months. Over the past 2 years she's had so many 'emergencies', and those are just the 'witnessed ones', the Dr is sure she must be experiencing more tias and minor seizures than are actually 'witnessed'.:( At one point last year we were having 'emergencies on a weekly basis for over 4 months.

    I just feel totally wrung out after 3 within a fortnight again, knowing there are many more to come. It seems my mother is one of those who wil go fighting until the bitter end and part of me wishes she 'hadn't got so much fight'.
    When I read those 'a peaceful end' notices, I just wish it could be the same for my mother.

    However I think I have come to a resolution for myself. I think I will book an appointment with the Dr. and discuss what might happen in future decision-making processes and what decision he believes best 'out of earshot' of the Home.
    I was made to feel so bad 'allowing your mother not to be treated ' and over-exaggerating that she 'is in no distress', when she often isn't if you only see her for a short time. The only 'clue' is in some tiny furrows between her brows' and they hadn't witnessed her turning blue gasping for breath earlier that morning. They can't monitor her 24 hours and generally think I'm over re-acting when I tell them she's in discomfort. They only took action this time because of her breathing problems.

    I suppose this illustrates a lack of trust on my part, but as with stanleypj there is nowhere else to go. My own mental health, marriage and family relationships are suffering and I know I need to take a step back for their and my sake.

    I even have wrong thoughts about how the Home is downplaying her condition because she is one of the few self-funders left having recently lost quite a few residents. That is unfair and shows how my own thinking is flawed.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,899
    Female
    South coast
    I think that going to see the doctor and discussing it with him is a good idea. I too wished it was mum who had passed away - I think it was a natural response once they get to that stage. BTW, it was 16 months between her having pneumonia and finally passing away and during that time I had been told three times that we were looking at the end, only for her to bounce back. I began to think she would outlive me! By the time we did get to end stage, though, her passing was indeed peaceful.
     
  5. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,109
    hertfordshire
    Hi Lemonjuice, what a torrid time you are having, I really feel for you. I felt I was battling against some of the carers too, some of them were convinced my Mum wasn't in distress, I couldn't believe it. We know our Mums better than any of them. I don't know about you, but I could tell by Mums mannerisms that she was distressed, so glad I kept on and on and insisted on GPS being called. I think your decision to see the dr away from the home is the correct one. You poor thing, you must be physically and emotionally exhausted. I pray it won't go on much longer for you and you will soon experience the sadness but relief I now have. Take care of yourself xx

    Ange
     
  6. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Bless you for that response angemc. It does get to the point where you feel you're going round the bend, this is best/ no that is best and when other people start saying , "Oh but she's not that person anymore, it's different now" and you start to feel on uncertain ground. Plus all the emotion which goes with it. . .

    You see Mum has no real reactions at all anymore, no mannerisms to give any clues. She doesn't even seem to move her hands and feel her 'dementia muffs anymore. Doesn't squeeze one's hand either -which might indicate whether she's in agreement / against anything you say.

    As to going on longer, when the CHC lady said they couldn't say she was in the last six months of her life I almost fell apart. I manged to hold it together when I was there but fell apart when I got home. But thinking how many more times we will be doing this scenario. .. Black numour is now taking over and I'm joking about, "How many dress rehearsals for dying can you have?" So perhaps I am over the worst? For now.Till the next time.
     
  7. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,478
    Ireland
    It all seems too cruel, for both of you.

    I think your idea of having a frank chat with the doctor is an excellent one - along the lines of "if she were your mother, what would you decide?" Sometimes, doctors are reluctant to speak openly until they hear from us that we do want them to. Because of course, there are people who would rather not know the reality of the situation.

    You've been through so much with and for your mum. I hope you will understand when I say that I hope you both have peace before too long. xx
     
  8. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #8 lemonjuice, Aug 24, 2017
    Last edited: Aug 24, 2017
    That's the one certainty I do have- I just want Mum not to have to suffer any more.

    However, now they've made me feel so guilty and I've authorised the antibiotics, if everything I've read is true, the antibiotics will do everything they're supposed to do and temporarily 'cure' the chest infection. From my reading it seems on average antibiotics give an extra 3-4 months life. Not necessarily a 'good' extension, but then she has no quality of life now, so it could hardly be any worse.Just I may have 'condemned her to a protracted death with many more 'emergency events. :( :(

    EDIt. You see the Dr agreed and authorised starting her 'just-in-case- meds but then when the Home said that if for example she contracted a UTI they would automatically prescribe antibiotics and the CHC lady talked very negatively about me 'not allowing my mother to be treated' and said she didn't believe my mother was in the last 6 months of her life I just panicked and felt so guilty. The Matron didn't give me time to check with the Dr or time to reconsider and within 5 mins it was settled to start ABs.
    The Dr has been our Dr for over 20 years and I trust his judgement over the Homes.
     
  9. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,478
    Ireland
    Well, if it's any "consolation", my husband had a week's IV antibiotics when he got aspiration pneumonia, and it just didn't respond to them at all. So just because they administer the antibiotics, it doesn't necessarily follow that they will subdue any infections your mum has and thus prolong her death any further.
     
  10. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,109
    hertfordshire
    These social workers doing chc haven't got a clue, we had one doing a review to see if Mum could get chc last week, how she couldn't see how distressed and ill my mum was is beyond me, she even said to me that she had seen others like my Mum who ten weeks later were walking around again in best of health! I took great delight, yes I understand that black humour, in phoning her this Tuesday to inform her that Mum had passed. You should have heard the stuttering at the other end, she didn't know what to say to me . Take heart it can't go on forever I know each time Mum had an attack of whatever kind, she dipped a bit further. It is exhausting being the one watching on making the decisions. Try to take a break if you can xxx

    Ange
     
  11. philamillan

    philamillan Registered User

    Feb 26, 2015
    99
    Opportunity to Die

    Sorry to sound so morbid but I think this is an important point.

    Dementia will only make someone pass away when they have stopped eating and drinking. This can take a while depending on the amounts that are taken in. It is a very slow and difficult process for the family. Often the loved one with dementia will have limited interaction with those around them.

    This means that when there is an "Opportunity to Die" naturally we have to think about it carefully. This usually presents in the form of an infection of sorts which can possibly be treated with antibiotics.

    The hard question is "Should this potentially terminal infection be treated"?

    There is no good answer but reflection on what we would want personally will usually be relatively close to what may be the best route to take.

    The simple water infections and chest infections should probably be treated but the very unwell circumstances may need a more conservative approach.

    In the end your initial decision is likely to be the correct one, it is just that the route before the end is not usually straight.

    This is usually emotionally stressful, just make sure that you do not add physical stress on top. Rest is important.

    Take care.
     
  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #12 lemonjuice, Aug 25, 2017
    Last edited: Aug 25, 2017
    I agree. Mnd you the Matron of the Nursing Home 'had a word first' and the NH has consistently 'played down' her needs every time. They still insist my mother has no 'Psychologcal Needs', becasue she has no reactions. Even when she was turning blue she didn't cry out in pain, but one could see it written all over her face.

    The cynic in me wonders,if they are influenced, as they've lost several self-funders over the past couple of months and at the end of the day they are a business and need every self-funder they can get. The NH does have a floor for 'respite/ convalescent / people who haven't died quickly enough from the Hospice, all of whom are paid for by NHS/ SS and pay around 60% less than the self-funders. Could that be one reason why they always downplay it? The CHC woman also said that because of the 'slow trajectory of mother's decine' that she probably fell into the category of people who would die without ever being eligible for CHC., whilst 'stressing 'that she wasn't influenced by financial constraints, but out of clinical considerations.'


    Just had a phone call from the Dr. who is in agreement with our original decision that 'comfort measures only' are more appropriate for my mother. That's a big reassurance.
    He has made a note on her notes to that effect and said that the next time the NH phones to then refer them to the surgery directly, so I won't have to deal with the future scenarios/ decisions and they carry out those instructions. Phew.
     
  13. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    I'm glad you have had the discussion with the GP. Ask the NH to mark up Mum's to the effect that they must phone the GP if needed but not the emergency services first.

    It is a hard time. Do you/don't you ignore the natural urge to get drugs/an ambulance/ help? But now that you know the end is coming, ( whenever?) you can settle your mind a bit. As you might remember ( and I don't blame you if you don't...it's been a while now and you've had better things to worry about) my late Mum went through a few end of life calls... It was difficult persuading some of the carers to NOT shout for intervention. but when the time came, it was peaceful and I knew I'd done the right thing in agreeing to no intervention.

    Mum was declined CHC despite the " managed need still being a need" pleading. She died 6 weeks later.

    Be at peace with yourself. You are doing the hardest job to the best of your ability..... and all will be as it should be.
     
  14. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Just wanted to pop in and say I'm thinking of you Lemon, we are travelling a similar road but my mum is still aware to some extent. She also bounces back from infections and crisis's but luckily we have had a meeting with a member of the advanced directive team and all agreed as a family that there are to be no heroic measures to prolong mums life and she is only to be made comfortable. That includes no IV meds, only Oral medication.

    I'm glad the GP is being sensible, I do believe they are the best people to help you decide as they see this all the time. I also believe there may be an element of truth in the CH downplaying your mothers symptoms for financial reasons. I've felt it in my mums care home too and I believe that was why we found it so difficult to get CHC in the past (although we were fortunate enough to be given it earlier this year after the manager left)
     
  15. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #15 lemonjuice, Aug 25, 2017
    Last edited: Aug 25, 2017
    I only dipped in and out of Talking Point- too busy doing actual caring mostly and I was aware of several people having the same issues with their relatives lasting till the severe stage and having emergencies, but don't remember actual names.:eek:

    You're right, I am trying to do my very best in an incredibly difficult situation.

    Having watched her sister and sister-in-law, as well as my father's maiden aunt who'd helped bring him up, all get to advanced stage dementia, she made her views known about what she felt she wanted.
    She always trusted she'd never reach this stage and I knew what she wanted and if it weren't for the Home who kept telling me "But she's not that person any more", which made me second-guess myself.
    The Dr issued her 'just-in-case meds over 2 years ago, but the Home has always just sent for the paramedics, with me constantly having to rush over to the Home to check that our wishes about not going to Hospital were adhered to.

    In fact I think the Dr and surgery are pretty fed up with the Home basically circumventing the 'in-advance decisions', whenever possible. Not all the staff, some are quite sensible and supportive but others . . .
     
  16. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Thanks for the support Timeout.

    Yes I am very fortunate with my GP who has known me and my mother for over 30 years. One reason I've kept her at that NH was that they allowed her to keep her own GP, and if she'd moved that wouldn't have been possible.
     
  17. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Lemonjuice, I don't know that I have any brilliant advice or anything to offer that hasn't been said, but I did want to express support and concern.

    I am sorry you are having such a difficult time, and especially that you don't have the support one would hope for, from the staff at the care home. On the other hand, the GP sounds kind and caring. It was a good idea to have a frank conversation, in private, not during an emergency/when you had to make a decision. It might be something others of us want to consider doing at some point, so I am glad you mentioned it.

    I think that it is very difficult to have to make decisions for another person, full stop. I am an only child and my mother, who has Alzheimer's and is in a care home, is also an only child. My husband is helpful and supportive, but I'm the one with PoA and the one who has to make the decisions. I thought it wouldn't be that difficult as I have a fair idea of what my mother would and would not want done, but sometimes it's not that simple. More than once in the past two and half years since my mother moved into her care home, I've had to make medical decisions or fill out paperwork, not really being certain of what to do or that I was making the right decision.

    And then, of course, there are the well meaning people (most of them) who want to tell you what to do, or how to do something. I have learnt whose advice to consider, and whose to disregard, but sometimes it still gets to me.

    I also think it's very hard when we have to make a decision on the spot, or in the moment. The pressure doesn't help.

    At the end of the day, all we can do, is the best we can do at that moment, with the information we have available.

    I feel sure you are doing your best and that you want what is best for your mother. I'm just sorry it is so difficult, to do those things.

    Best wishes and hope you will keep us updated when and if you feel up to it and have time. I'll be thinking of you.
     
  18. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #18 lemonjuice, Aug 25, 2017
    Last edited: Aug 25, 2017
    Ami in the USI don't know that I have any brilliant advice or anything to offer that hasn't been said, but I did want to express support and concern.
    Having brilliant advice isn't always what one needs, as you yourself point out. Sometimes too many different opinions cloud the issue.

    It's the feeling of support from people whi 'truly understand' and let's face it generally unless one has experienced dementia there is huge ignorance of what it truly is.

    It was a good idea to have a frank conversation, in private, not during an emergency/when you had to make a decision. It might be something others of us want to consider doing at some point, so I am glad you mentioned it.
    I am so glad I thought of it. It was so much easier to talk to him rather than in the presence of the NH staff.

    I think that it is very difficult to have to make decisions for another person, full stop. I am an only child and my mother, who has Alzheimer's and is in a care home, is also an only child. My husband is helpful and supportive, but I'm the one with PoA and the one who has to make the decisions. I thought it wouldn't be that difficult as I have a fair idea of what my mother would and would not want done, but sometimes it's not that simple.
    I'm also an only child and as you say ultimately the one with the PoA and recently I have said 'I never thought having PoA was going to get so complicated.:(
    For me at least having seen dementia beore with family and most importantly what it truly is at the severe advanced stage, I knew what Mum would have wanted, as she'd expressed her opinions so many times watching her LOs suffer. I tried telling the Nh that, but their answer was always, "But she's no longer that person." and truly for the past 3 years since she stopped communicating or interacting it has felt as though she became a different person and I began to doubt myself.

    Because mum stopped interacting and communicating of course she's a very 'easy' resident to care for and I've often got upset when they did things which I considered treating her 'like a doll'. Things such as putting make-up and painting her nails. :eek: My mother would have been hofrrified if she's been aware, as that was 'what women of the streets did'. :eek: Chcnaging the station on her rsdio. . . I could go on. So her life has not been 'good' these past few years.

    Unfortunately if as philamillan says people who have reached the very last substages of dementia will only die when they finally stop eating and drinking we could be here awhile. The NH are deermined to ensure she keeps being fed as long as possible and of course she's way past refusing, so the carers just keep going till the plate is empty, even if every mouthful needs constant reminders to swallow and then usually being stroked/stimulated to do so . I consider that torture myself and akin to 'being kept artificially alive', just as much as being attached to a machine.
    The mother I knew would have hated that, but whenever I broached this with the NH they said, but we have a 'duty of care' and feeding is part of the 'comfort measures' as long as she is able to tolerate it. Yes they actually said 'able to tolerate it':confused::( I've prayed sometimes for her swallowing mechanism to fail. Then of course one feels guilty. . .
     

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