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Cancer of the asophagus

Discussion in 'Off-Topic Discussion' started by Purple Streaks, Jun 2, 2021.

  1. Upsydaisy

    Upsydaisy Total Gardener

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    Hi @Purple Streaks , keep strong you're doing a grand job ...believe me !! If someone doesn't want to seek medical help....you can't make them. My Dad was exactly the same, we were so shocked to find out what he was eventually diagnosed with!! You've been there for her throughout and you will continue to find the strength to be there for her now. I agree with Nick...the inner strength you will acquire from somewhere deep inside you will carry you gently and support you in coming days/weeks/ months.
    You may feel you can't cope, but your body knows better, just feed it and rest it and it won't let you down.
    Use this precious time wisely and make every second a memory.
    Live for the here and now....the inevitable will happen and you know it. It will be then that your body and mind will need to be given the time to heal, and it will deserve this in repayment for making you strong....so much stronger than you ever imagined you could be.

    You will look back in time and see only the happy memories .

    Keep talking to us, don't bottle things up.....we are all here for you.:grphg:
     
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    • Purple Streaks

      Purple Streaks Gardener

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      We have NHS carer's coming in 4 x a day I was given to understand they would give her medication 4 x a day . They don't, I have to do this . I was given to understand they would give her breakfast ,lunch, tea . And help her to bed. They don't
      I have to be their to do these things. I understood carer's helped, am I wrong. Have things changed since I did this sort of work?.
      Or is it because its a free service..?

      I m thinking we may be best in paying for mums care.
      But how do we go about this , can anyone give advice please... I would be very grateful for some pointers please,
       
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      • Purple Streaks

        Purple Streaks Gardener

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        I'm finding it hard as I don't live at mums, so I'm backwards and forwards as day and it's wearing me out. I feel nauseous most of the time ,I know this sounds bad and I shall probably come under a lot of criticism. But I m feeling ill myself.
        I don t get help from anyone else ,it's just me.
         
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        • Fat Controller

          Fat Controller 'Cuddly' Scottish Admin! Staff Member

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          @Purple Streaks - there is no reason you'd get criticism as you are in an incredibly hard situation and all the running around on top of the stress of having your mum ill and of just keeping your own day to day things going as well is bound to be taking a toll on you.

          I suspect that the carers that are coming in are not NHS as such - the NHS will have made the arrangements with social services and in turn social services will have put in a care package using a private contractor. Those private contractors vary in what their licences and insurance will allow their staff to do, so it could be an issue of liability, sad as that is.

          Have you spoken with MacMillan? If not, I would strongly advise that you do as they can offer direct nursing support as well as advice and support to help you - do not underestimate the importance of you also being supported through this, as it is vitally important.
           
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          • NigelJ

            NigelJ Total Gardener

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            @Purple Streaks You need to look after yourself; if you are ill you will not be there for your mum.
            Not sure where you are in the country and policies/services vary. So a couple of suggestions: talk to the hospitals palliative care team, the same goes for the hospitals chaplaincy service, contact Macmillan Cancer Support and local cancer support groups.
             
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            • Upsydaisy

              Upsydaisy Total Gardener

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              Hello @Purple Streaks , I was thinking about you on Wednesday and wondered how things were.
              I really can't understand your carers. The care package they put in place for my Dad last year was faultless...they did everything, we did decline their offer to prepare his meals as we knew we could manage that. However we were fortunate that one of us moved in with him for what turned out to be his final few weeks.

              Try contacting your GP/ . Macmillan are fantastic, although with my Dad we didn't require their help as our GP organised all the support, using the local nursing team, but I know they were fabulous at caring for my friend and at supporting her husband, last year .
              Macmillan are there to support you as well...and this will continue for as long as you need it. Give them a ring and take all that they can offer....for both your sakes.! :grphg:
               
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              • NigelJ

                NigelJ Total Gardener

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                @Purple Streaks it is possible that the carers are not qualified/authorised to administer medicines, especially if strong pain killers are involved.
                 
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                • CanadianLori

                  CanadianLori Total Gardener

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                  @Purple Streaks whenever I've had to deal with care workers, I've always found it a battle at first to hammer out exactly what and will not be done for my friends/parents. Unfortunately some of them were just "trying it on", to see what they could get away with not doing.

                  Or as others say, find out what is expected from them. I landed up going back to the beginning of the "chain" and saying, look, coming to watch him eat is not what I need in the way of help. What can you offer in the way of helping get them cleaned up and dressed for the day and cleaned up and ready for bed?

                  Maybe the carers haven't been directed to give you comprehensive help and a nudge from the top might work.

                  I'll be thinking of you. Been there. Done it. And don't wish it on anyone!
                   
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                  • Purple Streaks

                    Purple Streaks Gardener

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                    I'm so worried I feel I am on my own I feel I don't know what I should know bout looking after her at this time of her illness.I am scared to be on my own with her specially at night.

                    Tonight I needed a break I have not had one in such a long time .so I did mum her tablet and labelled it ,left the note for the carers asking if they would pass it to mum they didn't even have to take off the cling film which I'd done for hygiene.
                    mum could have done this.

                    I was at my daughter's. 11 mile away ,I was looking after grandkids as one has Thalassemia and is poorly at moment.my daughter he to go work on a part night shift
                    .this had been arranged previous.

                    The carer phoned saying they can't pass her the tablet or the water to drink it down. So can I come and give it to her.I explained I wasn't home.and it would be ten pm before I' could be their I felt so guilty and I'd let mum down.

                    I really feel I cannot cope with it all.

                    I phone the office on the number I'd been given.to talk to them they give all the backing that they are their to support you .but whee is this support.??
                    There isn't the support which I need right now.
                    I'm so frightened and I'm so sorry I feel like this I've let my mum down.
                     
                  • Purple Streaks

                    Purple Streaks Gardener

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                    I am such a failure and I don't know where to turn.she keeps telling me she is ready for the final injection and is asking the nurses ,when she speaks to them by phone I am ready to go ,will you ask the doctor to give me the final injections.
                     
                  • Fat Controller

                    Fat Controller 'Cuddly' Scottish Admin! Staff Member

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                    As it seems the carers coming in are not qualified/insured to be giving medication, then (frustrating as it is) I can understand why they were not able to pass it to your mum. It does seem pedantic, especially as you'd gone to the trouble of laying it out, but if they had done so they would technically be giving it to her.

                    You are most certainly not a failure - you are under extreme pressure, and you need help. McMillan would be worth a try again, as would speaking to your GP to see if they can push anything from their side with social services; they may also know of any district nursing availability who are qualified to medicate.
                     
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                    • NigelJ

                      NigelJ Total Gardener

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                      I can only endorse what FC has said. He types faster than I do.
                      You are definitely not a failure nor have you let your mother down at all.
                      Take a deep breath and contact the groups suggested earlier in the thread; especially Macmillan my family has experience of the help they can provide.
                       
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                      • Upsydaisy

                        Upsydaisy Total Gardener

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                        Oh dear @Purple Streaks ....you shouldn't be in this situation at all.
                        You most definitely need to contact Macmillan or / and your GP.
                        You havent been given qualified medical carers for reasons I cannot understand. The ones you have are not authorised to administer medications so that is why they can't help you.

                        I know it's very hard but you need to demand medical carers, you shouldn't be doing this ,especially now...you need to spend precious time sitting ,talking ,holding each other close.


                        There were 4 of us ( siblings) when our Dad passed away last year. The carers that were arranged did everything, they said we shouldn't be troubled with that side of things and that what was of most importance was that we should be there for him and each other and to enjoy and make some positive final family memories together.
                        That is what you should be allowed to do as well.

                        Hold your head up high, you have not let your Mum down and get on that phone...you and your Mum deserve better....much ,much better support, and trust me it is out there!
                        :grphg:xx
                         
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                        • Purple Streaks

                          Purple Streaks Gardener

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                          haven't updated for a while but here goes,

                          We live in Doncaster, South Yorkshire. The care system was put together by hospital before mum was discharged. I think now that this particular package was inplace because I , despite my health problems live near her and I have been expected to do my part.
                          I'd also wondered if it was because it is a free NHS package.
                          Iď asked if they could give me more info on payment etc ànd they had told me it was a no chaŕge service that every patient is given this.

                          The consultant said they didn't expect her to last more than four weeks.
                          I have askedfor a care service that will administer her medication etc and everything these carers cannot do because they have not had medical training.
                          From reception I was given several numbers. After enquiring It would cost £52 per hour because 2 carer's come together so 4 times a day which is what we would require it would certainly add up. Mum at the time we discussed this could not agree to paying. I suggested that we help out as I felt it was to help me too.

                          Didn't get anywhere with that, and I've continued to carry on myself.
                          Mum has continued with barely eating. 3 tsps of food.
                           
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                          • Fat Controller

                            Fat Controller 'Cuddly' Scottish Admin! Staff Member

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                            Oh @Purple Streaks I am so sorry to read this :grphg: sadly this is where our NHS is failing and being failed badly. Care in hospitals isn't the issue, it is the domiciliary care that is around it that is shockingly bad to be blunt, which in turn puts additional pressure on the NHS through additional ambulance call-outs and/or readmissions; it also, as you are finding out, puts additional pressure on families. I really wish there was something practical that I could suggest to help.
                             
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