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Respite for Carer

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    Respite for Carer

    My name is Tina and my sister is probably nearing the end of her life. She is 56, diagnosed in May 21, communicates via eye-gaze, peg fed, virtually no movement and therefore completely dependent. She sleeps downstairs in a hospital bed. Her main carer is her husband who is in constant pain and is awaiting a gall bladder op. He gets very little sleep and is reliant on painkillers to get him through. Although carers attend three times each day and our local hospice provides one overnighter, he still does a huge amount, as anyone with experience of MND and reading this will appreciate.

    My question is around respite care. He (and I) feel he really needs a break before they reach crisis point. If he doesn’t get some respite, I think matters will be overtaken by events outside of their control. Our local hospice do not offer a respite care service (we live in the North West) and I wondered if there is any organisation that does offer such a service specifically for motor neurone disease sufferers.

    There may not be such a thing but we are really getting desperate - I should say also that I have offered to do a couple of overnighters to help but I know by seeing how distressed my sister gets, I would end up waking him anyway (as the one night pw person does).

    Any suggestions gratefully received.

    Hi Tina,

    We're going through a similar thing with my mum. She's 64, was diagnosed August 21 and has no movement. She can no longer use her eye gaze, so we communicate with a cardboard letter board and blinking. She sleeps downstairs in her hospital bed, and our carers move her from the bed to her chair each day with a gantry hoist.
    She's not peg-fed (she refuses this and NIV), so we feed her pureed food. Mealtimes can last an hour, and a lot of it comes back out as she hasn't got a great swallow. So she's getting very skinny.
    She currently has a driver for medicine, although we give her extra oramorph via mouth if she needs it.

    My sister and I take turns caring for her (my dad passed away a couple of years ago), swapping over each week and staying with her at her house for a week at a time. We've been doing this for nearly a year now.
    We're both finding it incredibly difficult as we both have families of our own, with kids. I live nearly 300 miles away, so I do a lot of driving to get up and down the country each week. My husband and I also run our own business, so we're trying our best to keep the business running as best as we can whilst I'm going back and forth.
    I'm absolutely shattered and heartbroken. Seeing this horrible disease take hold of mum is so awful and I hate being away from my husband and the kids so much. I constantly feel like I'm failing everybody.
    We have daily nurse visits, carers 3 times a day, some overnight care and 4 hours a week of carer sit-ins - all provided via CHC. It's a massive help, but we're desperate for some regular respite.

    Does your sister have CHC in place?

    My mum lives in the North West too. I was told by our palliative team that although they don't provide respite care themselves, mum could potentially go to a care home for a week (possibly two) every couple of months - paid for by CHC. That would be the limit of what CHC could pay for. If your sister has CHC, it would be worth asking her palliative representative if there's money left in the CHC pot for this.

    So far mum is refusing to leave the house, but I feel we might need to try to persuade her as we're physically and mentally shattered.


      Hi Nicky

      I feel for you and your sister (and your poor Mum obviously), this is an awful disease and you are in worse position than we are. My sister does have CHC and thank you for the info re respite in a care home. I’ll certainly follow up on that.

      The stage my sister is at sounds very similar to your Mum, syringe driver for some meds, plus Oramorph via PEG, she has no swallow. Massive excess and sometimes thick saliva and has decided she doesn’t want NIV.

      I wish you well and thanks once again for the info.


        Hi, it might be worth talking to your neuro OT as to whether they have some respite beds available. It was certainly the case for me with nearby Staffordshire in that they had 3 neuro beds at a local cottage hospital available to book in 1 week blocks for respite. I say ‘had’ as they suspended the service because of Covid and the beds being used for other things.

        Failing that you could also try your MND Clinic and see if they are aware of any respite beds available?

        Foxes Never Quit 💙


          Originally posted by KW1 View Post
          My sister does have CHC
          Can the number of hours provided be reassessed Tina? Those 3 visits per day; how long are they for? xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


            Originally posted by Ellie View Post

            Can the number of hours provided be reassessed Tina? Those 3 visits per day; how long are they for? xx
            A total of 3 hours per day Ellie. Split is 1.5 / 0.5 / 1.0, morning / afternoon / evening. Morning is inevitably never enough and they frequently overrun. I do think that the answer to this lies with the CHC panel - I think we need to request a review. Thanks for your response, I appreciate all the help I get from this forum, whether it’s as a reply to a specific question or just learning through people’s experiences. X


              Thanks JamesW. That is also something I can look into. I think it’s really important to take control of this before circumstances dictate what happens. Both my sister and her husband would like her to remain at home but there needs to be periods of respite for that to be sustainable.


                Have you spoken to your social worker, adult social care will look at your finances and decide how much they will pay towards respite and how many weeks per year. Sometimes you will need to get more funding inplace from elsewhere and you can apply to mnda. Have to say though we tried this earlier this year and in the southwest carehomes/beds are like hens teeth so be prepared for a long wait while they find one. Really not sure there are any specific to mnd though the care home might have received training. I hope you find what you need.
                when i can think of something profound i will update this.


                  Thanks denise. My brother in law has now arranged a meeting with all the relevant people, including their social worker. Hopefully, a solution will be found. Thanks once again to all forum members for your suggestions, kindness, help and support. It is much appreciated. 🥰


                    Hi Nicky and Tina,
                    I am Aidans wife/carer. He was suffering with excessive mucous and coughing despite taking nacsys.
                    He was also in constant discomfort from being stuck in one position all day, and severe pain when he needed to be moved (hoist).
                    His hospice consultant visited him at home to assess his chest and suggested that he would benefit from having a drugs driver inserted and to stay in bed. Although he was reluctant to do this he has accepted that he is now more comfortable.
                    A community nurse visits daily to look after the driver. We were also provided with carers from the hospice at home team 3 x daily & 3 nights a week. The professionals are adamant that all of Aidans issues whether it is pain, anxiety or secretions are controllable with medication and he should not be suffering in any way. The medication is being tweaked daily to achieve this.
                    This has all happened since Monday, so from paying loads of money for 1 carer 1 hour a day to this has been completely overwhelming in a good way. None of your loved ones should be suffering. The hospice was our saviour. Good luck.


                      I found the hospice to be amazing in their support and hands on approach and coordination of other services. They really did work hand in hand with both health and social care and because of their knowledge of local services were amazing at crisis management. Turning a minor crisis into a longer term satisfactory solution. They didn't "do" everything but ensured that the right people did.
                      Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                      Sense of humour intact throughout.

                      Sadly passed away peacefully 2/9/22


                        Aidan in Shrewsbury Hi Aidan's wife.

                        I'm sorry to hear how much pain Aidan was in but relieved to hear that he is so much more comfortable now - hurrah for the hospice 👏👏

                        Please tell him we send our love xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                          Thank you Ellie I will tell him. Thank you to everyone on this forum. He has found it a constant support as well as providing invaluable information throughout his journey. Xx


                            Thank you Aidan in Shrewsbury and MMG. My brother in law is now speaking to the palliative care team and the CHC people and overnight care has been agreed by the latter and has gone out to tender. If this is in place fairly quickly, we hope any crisis will have been averted. However, the advice re respite care has been invaluable and we will also be following this up if / when it becomes necessary. Someone said this disease progresses differently and at different speeds for everyone and you no sooner adapt to one set of challenges than another set is upon you. We have found this to be so - an ever changing set of priorities, emotions and challenges. I applaud all of you, sufferers and carers for your enduring support to others via this forum. I, like most people had little knowledge and no experience of this disease until it appeared suddenly and hit our family hard. I wish and hope for a cure. 🙏


                              KW1 and Nicky such difficult situations for you both. I hope you can get additional care and support in place soon. As difficult as it is try to take care of yourselves as well.

                              Aidan in Shrewsbury hi Aidans wife, sorry to hear he's been uncomfortable and struggling with mucus, I hope the drugs driver and additional care helps. Pass on our best to him.