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Thread: How many carer visits do you have

  1. #1
    Forum Member
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    Mar 2017

    How many carer visits do you have

    Hi, just asking advice about carers. How many visits do you have, times etc, what do they actually do. Martin is 56 and was diagnosed in Feb 2017. Martins condition has progressed rapidly this year. He is in a power chair full time, has little use of his hands and arms, I wash, dress and do everything for him. He has a rig through which he receives all his food and medication. He also has very little speech which makes communication difficult.We are in the process of having a wet room built so at the moment martin is washed at the kitchen sink and uses a commode, we have a hospital bed in the living room and a put up bed for me. We have two carers come in the morning for 15 mins, but it is not really working out so we are considering alternatives. Any advice you could give would be great. Thank you.

  2. #2
    Forum Member Ellie's Avatar
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    Oct 2012
    Hi EC,

    2 carers for 15 mins they've barely time to take off their coats and say hello!! 15 mins is useless - not enough enough time for a loo trip inc transfers etc

    When Martin was granted carers, were they for specific tasks?

    It takes my experienced carers (who are very used to my routine) about 75 mins from saying Hello to giving me my coffee - they get me out of bed, loo, shower & dress me, brush teeth & make me gorgeous for the day

    Their shortest visit is 60 mins to give me meds and bring me to the loo.

    I have 6 hrs per day, for which I am immensely grateful, but my hubby works and kids are in school.

    Has anyone mentioned eye gaze so Martin can use a laptop/tablet?

    Your current living arrangements sound trying, I'm sorry.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Marigold's Avatar
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    May 2018
    Hi Camper,
    I was diagnosed in May 18 and am not far off your husbands stage. No feeding yet and can still speak after a fashion!
    I have several ‘ladies’ now.
    One comes for 2 hours in morning, to get me up washed and dressed and do breakfast. She does a bit of tidying and cleaning with whatever time she has left. One for an hour at lunchtime for toilet and lunch. One at 5 ish for toilet and cuppa. If husband is away overnight, another visit to put me to bed.
    So there you are- my rota.
    Couldn’t manage on any less!!

  4. #4
    Forum Member Twinkle's Avatar
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    Aug 2018
    No carers atm, I assume this will change as hubby gets worse, then I'll need carers during the day as I'll be on my own. I don't need them during the night as we have our daughter living at home (she's 22)

  5. #5
    Forum Member Tim-griffiths's Avatar
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    Oct 2017
    Lambourn Berkshire england
    No carers for the wife yet, not got the the bed downstairs as yet but that's a distinct possibility in the near future, being her husband I've taken it upon myself to take care of all her needs that at present require being done, except for a Thursday afternoon when a carewatch cleaner comes into help with a bit of tidying up ( I always try to get this done before they arrive though ).
    Tim and Mary

  6. #6
    Forum Member Peckham Boy's Avatar
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    Oct 2018
    Peckham London
    I had to really fight hard to get carer help

    now that I got my continuing health I now get 2 carers call in to me 4 times a day and each call is a hour plus a carer comes in to do an hour domestic and an hour respite for my partner

    knowing that you only get 15 minutes help really makes me angry and that you do everything for him without any help is even more annoying
    I think that you should be getting so more help than you get now

    do you have a social worker? as they can help so much and OTs can get you equipment and adaptations
    and I really do think that a eye gaze tablet will be so help in so many ways (I use one )

    I really hope that you get all the help you both need

    best wishes
    Last edited by Peckham Boy; 13th October 2018 at 10:53.

  7. #7
    Forum Member
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    Dec 2016
    Norwich, UK
    My housemate is essentially bed bound, and sounds in a similar boat to Martin. RIG fed, can't move any limbs apart from lifting her fingers slightly. Can barely turn her head, but that's it.

    She uses an iGaze computer provide to her by the CASEE team out of Addenbrooke's. It tracks her eye movements and lets her type on the screen, then reads out loud what she typed. It's a life saver. She seems to be the first person in Norwich to have one from the feedback we get from everyone who meets her. It also lets her turn on a few lights in her room (the living room), control her fan and control the TV. It gives her a lot of freedom (relatively speaking) and I think every MND patient should have one by default. It also clips onto her wheelchair, for those rare occasions we can get her out.

    She has 24/7 care support. We have 1 carer that we've hired (paid for by Continuing Health Care) who works Mon-Fri, 8-4. Then we have an agency that provides staff for the rest of the hours, which includes someone staying awake with her all night. So she essentially has someone awake with her 24/7.

    In addition to this, a 2nd agency sends in what we call our 'double-up support' three times a day to help with bed pan. They come for 1 hour in the morning, around 11:00, which is when she wakes up. Then, 45 minutes in the afternoon and 45 minutes in the evening.

    When the timing is right, and she needs a bed pan while they are here, it works great! Which is actually about 80% of the time. Occasionally, she'll need a bed pan when a double-up isn't here, and that's when I help out.

    It took a lot of pushing, and insisting, to get this care plan, and there was a lot of resistance. But we held our ground and said it is what she needed. It also helps if you keep really good documentation. I printed a sheet that tracked when she used the bed pan, when she had meds, feed, how much flush she got, when she went to sleep, woke up, pretty much everything. I can upload a copy of it if you like. Having good documentation to show CHC was the tipping point that proved we needed 24/7 care support. I can't stress enough how much this helped.

    The goal has always been for me to return to work, but that isn't panning out. I am needed just a little too often to be gone 5 days a week. Plus, I've got some projects on the go, so am enjoying the time at home (although hating the poor excuse of an income that benefits provide).

    We have a wet room, and have used it a couple of times. But I found I was missing having a good soak in the bath, so I bought an inflatable bath tub (link below). I cut the top cover off (carefully) and the pillow bit. We have a ceiling hoist, that allows us to move my housemate from her bed to a wheelchair or shower chair on one side of the bed, or to her recliner on the other side. The other week we pulled the recliner out of the way, put the bath tub there and filled it with a hose from the kitchen sink. Then, hoisted her up, and lowered her into the bath and gave her a good wash and let her soak for a bit. She was fully supported by the sling while in the bath, so perfectly safe.

    We then put 6 or 7 large towels down on the bed when we moved her back, dried her off, and then removed the sling and towels.

    The bath was only outdone by her attending her daughters wedding the following day. The bath was the best 47 I've spent this year.

    Hanging in there, one day at a time.

  8. #8
    Forum Member Terry's Avatar
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    May 2012
    Hi Pen;

    Love the idea of the bath, it would be so nice to have a soak but I don't have a hoist. It would maybe suit others though.

    Love Terry

  9. #9
    Forum Member
    Join Date
    Sep 2012
    I’m curious to understand.

    Why do some have so much outside care provided by your National HealthCare, and some have so little for the same illness?

    Also why is it a battle to have to fight for it if a person is entitled to it ?


  10. #10
    Forum Member Boiler68's Avatar
    Join Date
    Feb 2018
    Hi Pen

    Thanks for sharing so much detail on this topic. I've often wondered about the great variations in care people seem to get and this information may help those who are currently in a very difficult situation like Lv who is currently stuck in a care home and feeling very unhappy and desperate. I wish there was more support and information for those living with MND and their carers. It seems like there is such a lack of understanding of the disease and you have to be prepared to do battle to get the slightest bit of help and seemingly impossible if you're on your own and can't communicate properly. Great idea about the bath! Bet your friend felt so much better after a good soak - it's one thing my hubby yearns for and I'm working on it but I've missed 2 hoist training appointments (because he's been stuck on the loo) and now they've left me a voicemail to say I've been removed from the 'system' ??? What a load of twaddle! So annoying.

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