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Advice for Hospital Care/Discharge-Mums given weeks/months

Mubsie
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Hi - I never thought I would be doing anything like this.  My poor mum who is 78 has had several cancers and has now got a secondary liver cancer which she had a couple of bouts of pallative chemo but fell ill and was taken to hospital.  Here she stayed for 5 weeks as she picked up a hospital infection and just about pulled through.  Chemo isnt an option now and they have advised weels/months.  She was discharged as mobile even though she lives alone and cannot get up onto a walker - we have had a weekend from hell and took her to A&E as a failed discharge.  She is now in a ward that isnt an oncology ward and she still cannot get up - they havent even tried .. she is very weak .. My question is alotough they deem that medically they cannot do anything if she is on oxygen and she cannot get up should she be on a rehabilitation ward or oncology - also should or can we insist on having another pet scan to see how much more the cancer has spread... Im at my wits end as dont really know what to do - poor mum is upset and confused as we cannot go in to see her together and my sister can go in at a specific hour a day - only 1 designated person - which is hard as we both work full time and live over an hour away ... Sorry if im rambling or if this isnt the sort of place to ask for advice ... my thought go out to anyone that is dealing with a lvoed one that has this cruel disease ..xx       

  • Dear Mubsie, I'm so sorry that you and your family are going through this, to see a loved one this way is heart breaking.

    Unfortunately it is difficult for us to comment in too much detail as we are not part of the hospital team who know and are caring for your mum. I would say it would be good for you or your sister on one of your visits to try and have a meeting with either your mums doctor, or maybe a senior nurse on the ward, to talk through these concerns and get some answers to your questions.

    Sadly your mum sounds very weak, and to do rehab you have to have a degree of health and strength to achieve the given tasks. Also, because of the cancer, your mums condition will naturally decline, whereas rehab is usually for when you know that someone is likely to improve in their overall health or at least will be stable in condition.

    When someone is this poorly the focus of care is very different, what is looked at is how she is feeling, and how they can relive any symptoms and distress, as opposed to doing lots of tests and giving treatments. This is called palliative care. The hospital team can probably see, as can you and your sister, that mum has deteriorated from what you have said, so doing a PET scan wouldn't tell you anything that sadly you aren't already aware of.

    What is important is that your mum is as comfortable as possible, and there is a team within the hospital who also work in the community called a palliative care, or Macmillan team who can help with this. This team will work at ensuring your mums symptoms are controlled and providing support for the family too. I wonder if a palliative care team has been involved, if not ask for a referral.  Also it might be that if your mum wanted to be at home they might be able to support that happening as part of a care package that can be properly put in place when people are poorly. I can't be sure about this, but it may be worth asking about.

    We don't know the situation, but as the doctors have said your mum doesn't have very long to live, even though it might be a difficult and upsetting thing to read about, we have information about dying from cancer, caring for someone and getting help on our website. I've placed the link here.

     Do take care, and I hope you have a support network around you during this time. If you want to talk any of this through then do chat with one of the nurses on the helpline. The number to call is Freephone 0808 800 4040, 9am till 5pm, Monday to Friday.

    Take care,

    Sarah.

  • Offline in reply to CRUK Nurse Sarah

    Hi Sarah

    Apologies for the delay in responding - thankyou so much for your reply.  Mum got taken into a hospice on Friday as was really poorly.  Doctor had said her organs are shutting down and wasnt sure if she would make the weekend.  She however picked up a bit and is very confused and seems to have had a personality change is nothing like my mum :-( ..  I have no idea if this is normal .. She still isnt eating anything and is drinking very little .. Again im not sure what this means or how long etc .. I hate to see Mum mentally suffering along with delaing with the cancer .. albeit im not sure if she remembers that ... Its such a cruel thing ... Its been over a year now since Mums diagnosis and first operation and its really taking its toll on her etc... Apologies for waffling .. Just thanks so much for your advice .. thank the lord for people like yourself

         

  • Offline in reply to Mubsie

    Hi again and thanks for the post

    I'm so sorry to hear your mum was taken into the hospice and is so confused - this must be so hard for you and the family.

    People can get confused either due to the drugs that she may be on for her symptoms, or from the actual cancer - although hugely distressing it isn't unusual. Do tell the nurses how distressing this is as if someone is very agitated too, they can have another look at the medication that she is on.

    It's likely that your mum may not be actually mentally suffering,  even though the appearance may suggest otherwise. Do keep talking to her, even though it may seem she may not be taking anything on board - the sound of your voice will be comforting.

    Again, it won't be possible to say how long your mum may have, as sometimes it's a bit of a rollercoaster meaning there are some very good days and then bad ones where no one will really know how things are.

    This is so hard for you - do give us a call if you would like to talk to someone - the number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    All the very best to you and your family

    Wanda

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