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

  1. #11
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    Quote Originally Posted by Annb View Post
    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
    Wow Ann, I'm so pleased you found carers that were so good, and able to take the pressure off you somewhat. I will suggest the Palliative team to my mum in the first instance and let her know a change of carers is possible. Hopefully we will find ones who have experience of MND
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  2. #12
    Forum Member WendyWooG's Avatar
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    Hi
    I am sorry that your mum has not found the carers helpful. Fifteen minutes is just not enough time I am so dependent on my carers. It sounds like you need a thorough review with your social worker.

    I have 1.5 hours in the mornings to get me up washed and dressed and hour long visits at lunch and tea time. I also have night sits where one of my carers stays over night for three nights a week to make sure my husband gets some sleep. They have also arranged a week of day sits too so my daughter can go on holiday without me having to go into a care home.

    You can request different carers and even a different care company, its worth making sure that you can be with your mum when she meets with the social worker to make sure she explains fully to you both why they haven't got an adequate care package in place for him.

    I have found that they don't tell you what is available until you ask. My carer has been invaluable in telling me what I can ask for.

    good luck, I hope you can get the help your mum so desperately needs.

    sending hugs Wendy.

  3. #13
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    Quote Originally Posted by WendyWooG View Post
    Hi
    I am sorry that your mum has not found the carers helpful. Fifteen minutes is just not enough time I am so dependent on my carers. It sounds like you need a thorough review with your social worker.

    I have 1.5 hours in the mornings to get me up washed and dressed and hour long visits at lunch and tea time. I also have night sits where one of my carers stays over night for three nights a week to make sure my husband gets some sleep. They have also arranged a week of day sits too so my daughter can go on holiday without me having to go into a care home.

    You can request different carers and even a different care company, its worth making sure that you can be with your mum when she meets with the social worker to make sure she explains fully to you both why they haven't got an adequate care package in place for him.

    I have found that they don't tell you what is available until you ask. My carer has been invaluable in telling me what I can ask for.

    good luck, I hope you can get the help your mum so desperately needs.

    sending hugs Wendy.
    Thanks so much Wendy, and thank you for sharing some insight into the care you receive. We have a meeting with the social worker today so I will be pushing for more care and support for my mum. Ideally, my dad will be moved to a hospice or remain in the hospital where there is access to round the clock care. I think at this stage, as the illness is so progressed, my dad returning home is unfortunately not an option. My mum has gone along with my dad's wishes so far and has ensured he is as comfortable as possible but I do not think he should be returning home, and that it could potentially be detrimental to them both.
    I am so glad you have the care that you require and that your carer has been so honest and open with you.

    Much love 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

  4. #14
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    similar experience

    Quote Originally Posted by Annb View Post
    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
    Our experience was very similar. Although the first carers were not useless or unpleasant, the agency wanted to fit us in to their requirements rather than ours. The agency which CHC found were wonderful and CHC were very supportive.
    We also had someone from the Carer's Trust who came to sit with my husband for a couple of hours each week. This brightened my husband's day as well as giving me some time to myself.
    Good luck.

  5. #15
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    Thanks so much guys for your wonderful responses, so helpful and I'm sure they'll be useful in the near future. Today we were told that there were no immediate plans to discharge dad after all, that there had been a mix up with the discharge and the nurse had not intended to write him down as leaving soon. Unfortunately he is so adamant that he wants to get out, it is heartbreaking. He believes the nurses are against him and he was extremely depressed today and said he wants to die. It is the most heartbreaking thing in the world. I sincerely hope a cure is found for this disease very soon. Much love to you all 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

  6. #16
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    Hello again
    As I understand it CHC Funding is instead of hospital care. If your mother is given sufficient help and your father wants to remain in his home until the end I don't think you should refuse him. However, your mother needs the maximum help available. Our hospice offers an out-reach service. They come into the home and help whilst CHC is being organised. They can only admit people to their hospice at the very end if they want to go there. They don't offer respite now, due to the number of people needing their help. The outreach team offer more than care for the very sick, they also offer support to the whole family so might help your mother at what is a very turbulent time for her. I have walked in her shoes so know she will be exhausted but still want what is best for your father.

    I hope you found the help you needed today. Take care of yourself too.

    Annb XXX

  7. #17
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    Quote Originally Posted by Annb View Post
    Hello again
    As I understand it CHC Funding is instead of hospital care. If your mother is given sufficient help and your father wants to remain in his home until the end I don't think you should refuse him. However, your mother needs the maximum help available. Our hospice offers an out-reach service. They come into the home and help whilst CHC is being organised. They can only admit people to their hospice at the very end if they want to go there. They don't offer respite now, due to the number of people needing their help. The outreach team offer more than care for the very sick, they also offer support to the whole family so might help your mother at what is a very turbulent time for her. I have walked in her shoes so know she will be exhausted but still want what is best for your father.

    I hope you found the help you needed today. Take care of yourself too.

    Annb XXX
    Thank you Ann. You're right, we're all very conflicted just now. Today at the hospital, my dad kept saying 'get me out of here, get me out of here' and was extremely depressed. I agree that if dad wants to come home, his wishes should be granted. However, my mum has health issues herself including osteoporosis and finds tending to him extremely difficult and is exhausted. He is also quite aggressive to her at times, mostly due to his frustration and anger at his illness.. I am unsure as to whether the level of care my dad will receive with CHC at home will be enough, as my mum is unable to look after him without having a nurse to hand constantly. I don't know what the solution is. It seems an impossible situation. Your help is so very much appreciated 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

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