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Thread: Home care verses nursing home care that has been our question...

  1. #1
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    Home care verses nursing home care that has been our question...

    Dad walked into his diagnosis on feb 1st 2016 and now he can only slightly move his right hand, he is speaking quietly and still eating. Mum and I cared alone untill we became ill and exausted, dads needs are relentless we got in some care, mum hated the constant stream of strangers in the home, she is not yet in remission from cancer and radical radiotherapy. Dad is unwavering in his desire to be at home, we recieved the news that we are entitled to full funding but all this ment was 4 1 hr visits and 3nights a week what is dad supposed to do the rest of the time? Mum and I are definatly of the opinion he would be better cared for in a local nursing home less than 10 minutes from our home and suggested the heavy wprk be there and we will bring hi home for meals family days etc. The nursing home is fully funded and fully equiped with nursing staff. Why do mum and I have to be made to feel like faliures? We have never been able to catch up with this hiddious disease.
    Are we bad people? The authorities say dad has every right to be at home I feel so guilty for not being enough....
    Dad moves to the nursing home on Monday he has spent the last week inrestbite in the local hospice, our family has become broken, I hope we can make this work, though dad is already asking for a bigger room , nothing is good enough.
    I stoped praying when dad recieved his diagnosis yesterday I started again I so want this to work I have no intention of abandoning him I know he is vunrable.
    Im babbling sorry just all the way through its like noone is listening..... all these official people give their opinions but no help never in my life have I sat through so many meetings and nothing has happened..........

  2. #2
    Forum Member WendyWooG's Avatar
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    Bibby
    This is a horrible situation, you are caring for a terminally ill parent and a seriously ill parent. Your mum is caring for your dad when she should be resting and trying to recover. It is not surprising that you are ill and exhausted. It is true that your dad has a right to be at home but adequate care support needs to be in place so that you and your mum are not made ill.

    Ask yourself this question, if you and your mum had moved out, would the authority still be encouraging your dad to return home given that they would have to provide a much more involved care package. If they are relying on you and mum to be there to make it feasible for dad to come home, your health and needs are equally as important as your dads. You cannot feel guilty about this as you are trying to do your best.

    It must be a heartbreaking decision for you all, because of course you would want dad at home if you could care for him properly without being ill yourself. I feel for your dad as he doesn't want the care home option and must be scared. Non of this is your fault, you are not failures. I truly hope this works out for you and that dad settles. Have you contacted Mnda for advice support?

    I haven't been much help but you do have my sympathy, best wishes and hopes that your dad is ok in the nursing home.

    Wendy x

  3. #3
    Forum Member john's Avatar
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    Hi Bibby,
    Sounds ridiculous. Presumably Dad is not walking so either needs a hoist or two people for bathing, toiletting etc. Is the support CHC through the NHS or is it from your local social services? NHS should be fully funded, local authorities struggling with reduced budgets tend to be less generous. If he can't get to the loo unaided how do they suggest he manages with 4 daytime visits a week? Ring mnda connect and get their advice, their contact information is above under the mnd helpline tab.
    Good luck and don't blame yourself, your parents are allowed to expect support in their circumstances and it is not down to you to provide it. You are already doing more than most would or could.

    John

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    Forum Member Dude's Avatar
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    Hi Bibby Define slightly. Can he lift a cup and blow his nose.
    Can his leg weight bear.
    What are your ages.
    Has mums treatment finished.
    Has the care now started.
    So dad s moving out on monday ?. I' m confused, as usual lol. Dude x

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    Thank you so much for your sympathetic reply , when we told the authorities we would no longer be able to offer physical care they replied with there is a man in our region who only his eyes work and he only has 4 1hr sessions a day and he lives alone! This filled me with dread.
    I havent taken the decision lightly to put dad in a care home, I put hours of research into making sure it would be right liasing with the staff letting them know how difficult this would be for dad, I want the best for him.
    Everything is crossed that this works out.
    Everything has happened so quickly with the constant brain storming to find adaptations and devices to make life easier dad has deteriorated at such a pace every other week it was something new to deal with we have had so much equipment in and out of the house it stoped being a home and was becomming a prison.
    I have spoken with the mnda and always found them amazing we havent been to a local group as dad didnt want to I dont think he will ever be able to accept this diagnosis, however our area co ordinator did put us in touch with the local hospice and dad has been attending a therapy session once a week, mum and I counted the days every week to take him there however he regularly would make us run late with constant requests for anything from extra breakfast to a change of shoes! Then he wanted me to pick him up early he just didnt seem to notice we were on our last legs, I suppose the final straw came when he lost the ability to transfer and it was all hoisting, up to 5 or more times a day just to use the loo was soul destroying and the hospice couldnt let him use the loo after he needed hoisting so if he has an earge I have to fetch him home. Life is unrecognisable.
    From Monday I hope mum will become rested as will I and we will become wife and daughter, share some lovely moments with dad and the end of this jouney will be without suffering, calm and together

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    Dude, dad can barely press a button he has no mobility, he cant scratch his own nose or blow it, he can chew and swallow at the moment, we havent time to chase the authorities to extend his care plan dad deteriorates weekly I feel I would continue to waste time I could be spending with him. Mums treatment has finnished however it was a very aggressive cancer and every day that passes is a bonus she has been left doubly incontinent.
    She didnt need people in and out of the bungalow all times of the day and night its all so unfair x

  7. #7
    Forum Member Ellie's Avatar
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    Sounds like you've made the right decision, given your circumstances and limitations.

    (Am quite surprised/shocked that his hospice refused to let dad use the loo as it meant hoisting him!!!)
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Forum Member Dude's Avatar
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    Bibby I agree with Ellie. You made the right choice. Dude x

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    Thank you ....x

  10. #10
    Forum Member john's Avatar
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    Only sensible option for you Bibby. Hope it all works for you. Presumably you can keep the hoist for Dads visits. Can he stand? Dude asked but I didn't see a response. If he can there is something called an ETAc turner which is a turntable with a handhold which is a lot quicker and easier than a hoist..

    John

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