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Thread: Dad to be discharged from hospital in critical need of care...Please help

  1. #1
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    Dad to be discharged from hospital in critical need of care...Please help

    Dear all,

    I haven't posted on these forums since my dad was first diagnosed with MND in 2014. His situation now is that he is reliant on a ventilator, cannot move any part of his body except a couple of fingers, can barely speak and requires the use of a hoist to get him in and out of bed. He has always been a lovely, humble and quiet man, but his demeanor and attitude have understandably altered as a result of his illness. He can, at times, give my mum a very hard time and speak down to her. Despite the fact she has dedicated her entire life to his care, from giving up work to moving into an accessible flat, and works tirelessly to meet his needs, he is quite thankless. Anyway, that is all just background.

    My parents had the opportunity for dad to go into respite care for a short time, since my mum was having difficulty with his extreme needs, and their relationship was quite tumultuous. He went into respite, but became very paranoid and, in a nutshell, hated it. He felt the care he was receiving was not enough, and he didn't trust the people looking after him, as they left him for too long and weren't use to his equipment and machines. As a result, he was released and taken home. However, within 24 hours, he was in hospital due to breathing difficulties. He has now been there for 3 weeks.

    Last week, we received a very difficult call that his oxygen levels had dropped and that he was extremely ill, the consultant was particularly concerned. We were prepped for a fast decline, but he had perked up the following day, after been on morphine for several hours. A week later, the hospital are talking about his discharge, coming home to live with my mum again. Our concern is that he is far too ill at this stage to be returning home. What's more, my mum feels in no way able to provide the level of care he requires as he has progressed rapidly. Her concerns are several-fold. For a start, he needs medical care and attention that she is not able to provide. In addition, he needs 24 hour care which, for one person (as my sister and I live down South), is exhausting and she has health issues of her own to consider. Also, she does not want to be in a situation where she finds him lifeless in bed which, as the illness progresses, is becoming increasingly possible.

    The social worker came today to discuss the discharge with her. We had decided that discharge from hospital is an impossibility, and dad cannot possibly come home, even with the (rubbish) carers they get in for a few minutes daily (to be honest, they would be useless even if they were here all day). The social worker seemed to basically ignore my mum's requests unless dad agreed. Dad is so adamant that he wants to return home, and is unwavering in this. He has no comprehension of how much care he requires and currently does not appreciate or seem to care about how difficult it is for my mum. Although his requests should most definitely be considered, I feel he is not in a position to determine what would be best for his needs, and his requests are very much at odds with my mum's. I don't want my mum to be in a situation where she is even more exhausted than she already is, as she is currently able to have some time to herself for the first time in years. I was wondering if you have any suggestions regarding rights in this situation: does what my dad say, go? Or can the fact that my mum feels ill-equipped and unable to provide at-home care at this stage of the illness have more weight?

    Sorry for the rambling message, any help would be very gratefully received xxx
    Please support Gordon Aikman in fundraising for more MND research and improved conditions for MND patients throughout the UK: https://www.justgiving.com/gordonaikman

  2. #2
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    From what you say about your Dad’s high level of health care needs I would have thought that he should be eligible for Ongoing NHS Healthcare. You apply for this via you local Primary Care Trust. If unsure your GP should be able to advise you how to apply. Your Dad will need to have his care needs assessed. If continuing NHS Healthcare is granted all his care should be provided/funded. Don’t be afraid to appeal against the decision if turned down initially. We had to appeal for my father in law and it was granted on appeal. Sadly all about minising costs rather than looking after those who need care.

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    Quote Originally Posted by Tallali View Post
    From what you say about your Dad’s high level of health care needs I would have thought that he should be eligible for Ongoing NHS Healthcare. You apply for this via you local Primary Care Trust. If unsure your GP should be able to advise you how to apply. Your Dad will need to have his care needs assessed. If continuing NHS Healthcare is granted all his care should be provided/funded. Don’t be afraid to appeal against the decision if turned down initially. We had to appeal for my father in law and it was granted on appeal. Sadly all about minising costs rather than looking after those who need care.
    Thank you so much. Do you know what type of care this would provide if my dad were to come home, i.e. an all day carer? My concern is that, if he were to come home, no amount of care would be enough to ease the burden for my mum whilst also meeting his significant needs. When he returned home for a brief period, he would have carers coming in 15 mins four times a day but they mostly faffed about and let my mum do the work. What they both really require is round-the-clock care for him xx
    Please support Gordon Aikman in fundraising for more MND research and improved conditions for MND patients throughout the UK: https://www.justgiving.com/gordonaikman

  4. #4
    Forum Member Terry's Avatar
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    Hi Goldilockz;

    Mnd can sometimes attack the emotions and occasionally make them very aggressive. Dad could be just so frustrated making him hard to live with.

    If he is very aggressive then there are drugs to curb it but I doubt that he really has this extreme trouble.

    They both have a say in what happens as no one is physically forced into things. CHC does not guarantee quality care and sorting out good reliable help for his complicated needs is very difficult.

    Phone Mnda connect over the situation.

    Love Terry

    Clearly 15 min, 4 times a day is rubbish and two hour periods would be much better.

    Maybe the hospice can help you sort out a care package and also CHC.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Quote Originally Posted by Terry View Post
    Hi Goldilockz;

    Mnd can sometimes attack the emotions and occasionally make them very aggressive. Dad could be just so frustrated making him hard to live with.

    If he is very aggressive then there are drugs to curb it but I doubt that he really has this extreme trouble.

    They both have a say in what happens as no one is physically forced into things. CHC does not guarantee quality care and sorting out good reliable help for his complicated needs is very difficult.

    Phone Mnda connect over the situation.

    Love Terry

    Clearly 15 min, 4 times a day is rubbish and two hour periods would be much better.

    Maybe the hospice can help you sort out a care package and also CHC.
    Hi Terry,

    Lovely to hear from you again. I remember you being a tremendous support to me when I first joined the forums. Dad isn't aggressive as such, he just obviously has a great deal of anger and sadness and they are mostly directed to the one person who has consistently been there for him, who has been his rock through all of this. It's hard to see and it pains me when they argue because this situation is tough enough for everyone involved. I am so pleased to hear about CHC, this seems like it could offer a good solution. Will definitely look into it further.

    Thank you and look after yourself xx
    Please support Gordon Aikman in fundraising for more MND research and improved conditions for MND patients throughout the UK: https://www.justgiving.com/gordonaikman

  6. #6
    Forum Member Barry52's Avatar
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    Hi goldilocksz,

    If your father received CHC care then it would be permanent care thus relieving your Mum. As has been said his GP should arrange this as a priority. Another option is to see if a local hospice would accept him.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

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    Quote Originally Posted by Barry52 View Post
    Hi goldilocksz,

    If your father received CHC care then it would be permanent care thus relieving your Mum. As has been said his GP should arrange this as a priority. Another option is to see if a local hospice would accept him.

    Best wishes,
    Barry
    Thank you Barry. I think my concern is that we would be offered a service like the carers who came up before my dad was in hospital who, my mum says, are a bunch of bumbling middle aged women who don't do much except stand around and complain about their wages. At this stage, he would need nursing care or a medically trained people/ person to come in and assist him. I would normally think staying in the hospital would be the best option for him but last night, he buzzed for his toilet bottle for 30 minutes before anyone saw to him and the care is fairly lax. I just want what is best for him while considering my mum's needs as well xx
    Please support Gordon Aikman in fundraising for more MND research and improved conditions for MND patients throughout the UK: https://www.justgiving.com/gordonaikman

  8. #8
    Forum Member Ellie's Avatar
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    Hi Goldi,

    Sorry about the difficult situation your family find itself in.

    I just want to add that *if* your dad were to come home with CHC, make sure he is also under the care of a Palliative Nursing team for managing meds if his breathing causes him anxiety or other issues.

    Is he on any antidepressants btw?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  9. #9
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    Before my husband was discharged for the last time he was first referred to the Palliative Team in the hospital. They visited us at his bedside and asked if we would like to being referred to the local hospice. The hospice visited us assessed my husbands needs and applied for CHC on our behalf. We received it almost immediately. The CHC people arranged fo agency carers to come. Once organised they phoned and told me that if at anytime I was unhappy with the Carers I was to phone and they would be changed. We did not have any problem with the Carers possibly because the agency did not want to lose their CHC contract. We found they had all well trained and they were lovely to my husband.

    If your mother find the Carers you are sent are not doing the job properly then she should notify CHC. the agency or Social Services and request a change. She does not have to put up with poor Carers. Your father need decent care in his last days and your mother need the pressure taken off her. My husband resisted having outside help but once it was in place it helped our relationship enormously.

    Ann

    Ann

  10. #10
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    Quote Originally Posted by Ellie View Post
    Hi Goldi,

    Sorry about the difficult situation your family find itself in.

    I just want to add that *if* your dad were to come home with CHC, make sure he is also under the care of a Palliative Nursing team for managing meds if his breathing causes him anxiety or other issues.

    Is he on any antidepressants btw?

    Love Ellie.
    Hi Ellie,

    Thank you so much. No, he is not on antidepressants. He is very stoic and not willing to acknowledge his depression. In fact, on the rare occasion it has been suggested to him, he has reacted very badly so it hasn't been suggested since. Though I think anyone in his condition would feel extremely depressed, it's just not something he is comfortable admitting unfortunately xx
    Please support Gordon Aikman in fundraising for more MND research and improved conditions for MND patients throughout the UK: https://www.justgiving.com/gordonaikman

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