Caring for a terminally ill parent

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Mum has pancreatic and liver cancer. She spent a couple of weeks in a hospice and is now at home for what looks like her final days. Dad is 82 and needs help looking after her - we have carers in 4 times a day but it's all the other stuff: medication, food and drink, shopping, washing, and constantly answering the door and the phone, and sorting out all the equipment that gets delivered!

My brother and I have been staying with them the past 2 weeks. Mum is in bed all the time now, sleeping most of the time, very very weak, barely eating anything, hardly speaking, her eyes look different too, not really focusing most of the time. 

Until the weekend just gone she was walking with assistance and fairly OK - very rapid decline over the past few days. I don't know how much longer she will be with us. We spend most of the time making sure she is comfortable.

I know that others on this forum have been through similar times. I'd be interested in sharing experiences and practical tips!

Cheers
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Comments

  • ESBlondeESBlonde Frets: 3576
    I've not experienced first hand as such, but you have my sympathies for the family situation. May you have the strength between you to carry on.

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  • mellowsun said:
     we have carers in 4 times a day but it's all the other stuff: medication, food and drink, shopping, washing, and constantly answering the door and the phone, and sorting out all the equipment that gets delivered!
    my sympathies for your situation..

    what exactly are the carers doing if not the shopping, meals, medication and washing?.. ask a supervisor/manager just what services they cater for. we have a carer in for my Dad 3 times a day 7 days a week and they do anything needed within the allotted hours we pay them for.
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  • Danny1969Danny1969 Frets: 10357

    We are lucky enough to have the Rowans Hospice where I live, who provide palliative care in comfortable surroundings. They also provide Hospice at home. Is there anything like that in your area ?
    www.2020studios.co.uk 
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  • ESBlonde said:
    I've not experienced first hand as such, but you have my sympathies for the family situation. May you have the strength between you to carry on.

    This ^

    Can the MacMillans people help? They were invaluable when my dad had big C before he went into hospital, I wasn't there at the time but my mum got the help she needed. Then he went to hospital, from whence he only got out feet first.
    "Working" software has only unobserved bugs. (Parroty Error: Pieces of Nine! Pieces of Nine!)
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  • Sorry to hear that, mate :(

    My wife's a senior carer at a secure dementia care unit (the home does have non-secure wings too, though). I personally don't have much experience, but if you have any specific questions I can get her perspective - if you think that might help?
    <space for hire>
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  • Sorry to hear about your Mum. I've been through similar with my Dad, aunt & uncle.

    All I'd say is to just try & let your mum know you're there with her as much as you can. The pain relief morphine will leave her confused and her mouth dry so have water & a swab or spoon to help with that.

    She may well rally round & find strength once or twice again so be ready for that & again - let her know you're with her.

    Best regards
    Seemed like a good idea.....

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  • mellowsunmellowsun Frets: 2422

    what exactly are the carers doing if not the shopping, meals, medication and washing?.. ask a supervisor/manager just what services they cater for. we have a carer in for my Dad 3 times a day 7 days a week and they do anything needed within the allotted hours we pay them for.
    Mum is bed-bound so the carers are toileting, washing her and changing her clothes. I never thought about asking them to do the shopping as well! Although she needs two carers as she is totally immobile, so I can't image they could do any more.

    We'd rather stay in charge of the medication as the regime is really complicated. Doing the laundry is hard to keep on top off, maybe we should get help with that.

    Thanks all for your thoughts. Macmillan were great at the start and getting her into a hospice, but now she's at home it's more about getting the equipment and pressure care regime in place.
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  • johnnyurqjohnnyurq Frets: 1368
    Very sorry to hear this and hope you and yours can make it through.

    It is a a tough one because a long protracted illness with a poor prognosis is probably/possibly one of the worst things to have to deal with.

    Good carers and some respite care from any local Hospice help greatly and hopefully you can find one nearby.

    My only experience of Hospice care (one of my lifelong best mates with an inoperable tumour) was stunning as these folks really are starsand experts at helping the patient and family/friends.

    Good luck mate it is a shitty thing you are having to deal with so positive vibes yours and your family's way.
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  • mellowsunmellowsun Frets: 2422
    The hospice have been great, and we have hospice at home who have arranged the carers, the OT, etc. It's just these final few days/weeks that are going to be really tough. We (including mum herself) want her to be at home during this time, rather than back in the hospice, so I guess we have chosen a difficult path.

    Heartbreaking for my dad most of all, they have been married nearly 50 years. The main thing is being there for him.
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  • Hard for me to talk about as it's about 2 years to the day since my Mum went downhill fast in the same way, so you have my total sympathy and empathy.

    Citizen68's advice to let her know you're all there is spot on, especially the more she seems "not there". We did shifts between me, my brothers and cousins during the last weeks so she was never alone or purely with the staff. Even though the staff were fantastic it was important for us to know at least one of us would always be there just in case.

    As it turned out it seemed like Mum hung on until the night we were all there and her childhood best friend had made it from down South (we'd told Mum she was coming and even though she was in a coma more or less, it felt like she knew). Not an easy thing to go through but I'd say you're doing the right thing.

    Most important is to be there for yourself as well. It's a tough time and easy to forget that you need caring for too.
    Best wishes for you all at this testing time.
    littlegreenman < My tunes here...
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  • 29 years since my mum died following 4 years of MND.  Nothing can prepare you for what will inevitably come.

    Make sure you look after yourself as well as your mum.

    Take care

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  • Its very sad to hear what your Mum is going through. I have a terminally ill Nephew who requires round the clock care, my Dad also died from Cancer too. I understand how upsetting it is to see someone close suffering like that.

    I can only wish you all the strength in the world to get you through this tough time. 

    Glad you have got the carers there too to assist and to give You, Dad and Brother some time with each other.

    Be strong for each other.






    Only a Fool Would Say That.
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  • Dreadful what your going through.
    Take each day as it comes.
    Lost my mum in a very quickly to cancer in 2004 diagnosed xmas eve and went on easter sunday.
    Pallative care were excellent but tbh macmillan werent.
    Making sure shes comfortable and that you're there for each other over the coming days is right.
    My mum spent her last days transferred to our local hospital where she knew people and we could get there with ease - the nurses were great.
    If i have any regrets its that i still tried to balance it all with work - i just wish in hindsight i'de have taken longer off to be there 24/7.
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  • HootsmonHootsmon Frets: 15926
    do what you can for your parents my friend. your endeavours will eventually be a comfort to you and see you through many years to come. God love them
    tae be or not tae be
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  • mellowsunmellowsun Frets: 2422
    Thanks again all for your good wishes and support.

    Mum got out of bed today and we got her downstairs for the first time in ages.
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