What next

Discussion in 'End of life care' started by Helpless62, Aug 10, 2018.

  1. Helpless62

    Helpless62 New member

    Aug 10, 2018
    i will try not to waffle
    Mil has been in hospital for 2 weeks and went in with lots wrong pneumonia sepsis high sodium we were taken into a room and it was decided no resuscitation she had tubes everywhere. She has lived in a care home for four years she had bad Alzheimers with mixed dementia when she went in. A year later her husband of 60+ years together joined her he is reg blind with V dementia

    She came round quite well and we took fil to see her then she needed rehydration again now they want to discharge her, her care home that have had all their money through the sale of the house are refusing to have her back saying they only have one staff at night and say they are not a nursing home.

    Fil gets muddled but he is a quivering wreck and just wants to be with his wife he understands some things but even forgot we have taken him to see her both weeks when all the tubes came out she is not eating or drinking and they are not going to hydrate. If we knew when she was going we could try and get him to see her more
    How do we tell him she is dying?
    We don’t know how long she has got
    Their money runs out in September.
    We live a 3 hour round trip away so wherever she ends up we cannot take him every day?..
    She is 87 and he is 89
  2. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello at helpless and welcome to Talking Point, although I am sorry that you have found us under such sad circumstances.

    My mum reached that stage after a fall and broken hip. She too was rehydrated in hospital, but they could not do any more her. Fortunately her care home accepted her back and she passed away there.

    I dont think that her husband will be able to understand that she is dying, to be honest. It might be kinder to just say that she has popped out when he asks where she is so that he doesnt become agitated and distressed.

    Im sorry to say that it is impossible to say exactly how long your MIL has got now; her body is slowly shutting down. My mum went 17 days after rehydration was stopped, but most people do not go that long. Is the hospital talking about "making her comfortable", or are they looking to discharge her to a nursing home? You may find that they decide that she is not well enough to move. This is a difficult time for you all and the financial situation is sheer bad timing - I expect feels like the cherry on the top.
  3. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    N Ireland
    Hello @Helpless62, you are welcome here.

    When you say that their money runs out in September do you mean that any remaining assets would be below the limits where Social Services would have to step in. I should think that it's just important to get a settled situation in place so maybe contacting Social Services would be worth a try. I think I have read that a SW may be attached to the discharge team at the hospital so that might be a good place to start.

    In any case, may I suggest you phone the experts on our help line as they may be able to talk you through the process. The details are

    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm
  4. Helpless62

    Helpless62 New member

    Aug 10, 2018
    Thankyou the doctor wants to talk to us again so we will see if they have a care plan in place. I am so cross with the care home. Last year I know they had a lady bed bound for months who was not talking and eating a little. She could not turn herself The care home staff and managers all left in March and a new manager and assistant and staff were replaced It is a group of three. I feel like taking fil out but he has got to know some of the new staff a couple of the male carers seem really good and great with him. We separated mum and dads money so if she goes soon it will give him a bit longer funding his place there.
    They both get down to the 23,000 each so his will go to 46,000 but at the moment not sure if hubby says the final payment is September or if they have had it. My hubby did contact social services at the end of July and they said they would allocate a sw which we know will take ages as we have been through this with my mum. Yes we have 3 of them
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    I'm so sorry to hear of this situation.
    I just wondered.....in practical terms, your MIL cannot really be regarded as self-funding at the moment, can she? So if for no other reason, the hospital should make a referral to the discharge team to make a suitable placement, if, of course, they are planning to discharge her. This won't happen quickly, I imagine, so you would still need to keep MIL and FIL in touch in some way.....although as @canary says, it is unlikely that FIL will fully understand or remember the situation.
    I'm sorry you're going through this and I hope the meeting with the doctor went well.
    All the best
    Lindy xx
  6. Helpless62

    Helpless62 New member

    Aug 10, 2018
    We lost MIL yesterday, The care home that she has been in for four years said they could not have her back for end of life care.. which the assistant manager made this assessment, she has only worked there a few months basically she said go and find a nursing home. No suggestion no help. My husband went above her and spoke to her manager who was fantastic they have another care home in the group that is one of these expensive ones like a good hotel. She arranged with discharge team a hospital bed got two rooms together so FIL could be next door and visit her anytime the staff were fantastic,caring everything you should expect. FIL and my husband were with her and although fil was struggling he understood .. I just wish a week ago we would have gone above this assistant manager and they coul have been together a week instead of a day
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im so sorry @Helpless62 although I am glad that you managed to be with her at the end
  8. Helpless62

    Helpless62 New member

    Aug 10, 2018

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