Where can I find some help

Discussion in 'Middle - later stages of dementia' started by Lynn3008, Jul 4, 2017.

  1. Lynn3008

    Lynn3008 Registered User

    Jul 3, 2017
    Scorton Lancs
    #1 Lynn3008, Jul 4, 2017
    Last edited: Jul 4, 2017
    I am age 62 and my mothers has mixed dementia. My mother has lived with us for the past four years. We had a memory nurse and consultant visit us at home who diagnosed the mixed dementia this was nearly 4 years ago. My mum is now very bad and has no memory retenison at all has very poor mobility can only move from chair to wheeled chair then my husband and l lift her into bed and also lost her bladder control . I buy all her pads etc but was hoping someone may know where I can get the pads cheaper. I have been paying £38 for a pack of 30 which I think is expensive even if they are made by tenna. I had read lots of your fact sheet and would say mum is going into the later stages of dementia. As mum doesn't know she can't walk and will just try to get up and walk means I am now with her 24/7 as I don't feel she is safe to be left. I was wondering if I could get someone to sit in letting me go out for a couple of hours or will this be to unsettling . I have approached a local care service who have said that they could come and keep her company and as it's not care it would only be a cost of £17 a hour but I am not sure if it's worth the risk of unsettling her. Any advice please xx
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Lynn

    Welcome to Talking Point.

    I think you may be entitled to Direct Payments, which will pay for any sitting service and agency carers you can get to stay with your mother to give you a break.

    You will need to apply to social services for an assessment and they should allow you so many hours each week according to what they see as your need.

    I hope you are getting the higher rate attendance allowance too.
  3. Beate

    Beate Registered User

    May 21, 2014
    #3 Beate, Jul 4, 2017
    Last edited: Jul 4, 2017
    Gosh, no, of course you shouldn't have to buy inco pads, at least not all of them. Please ask the GP to refer her to the Continence Service, and they should supply her with a certain daily quantity for free.

    You need to urgently call Adult Social Services and ask for an assessment of her needs and a carers assessment for you. You're entitled to one by law and they have duty of care for a vulnerable adult at risk. They can tell you about Day Centres, carers and sitting services and put together a care package that's right for her. They should also send an OT to check over your house and provide you with whatever helpful accessories you might need - grab rails, raised toilet seats, shower boards, wipable mattresses, bed levers - anything that might make her situation easier.
  4. Lynn3008

    Lynn3008 Registered User

    Jul 3, 2017
    Scorton Lancs
    Thanks for advice I have rung social services and when mum moved in with us they did a home visit. All they said was I can see you have everything you need and your mum is looking good then they left. After mum living with us for 6 months I rang them again but they said they had closed mums case as no action was required. They will get somebody to do a assessment but that was over 3yrs ago and it doesn't matter how often I ring they just say mums file is in the tray waiting for the next free social worker I am still waiting so don't think they can help. I don't mind paying for a sitter it's just not knowing if it will unsettle mum. What is attendance allowance? What is direct payment? If it's for respite we don't need as I pay someone to live in as this doesn't confuse mum as much as going into a care home would if we want to go away. I have already purchased hospital type bed with air mattress and a air cushion for her chair so hoping not to get bed sores but it's hard to keep on top and making sure I put plenty of cream on when I change her. I have rang doctors about her pads and yes I can get 3 a day for free but they will have to come and assess her so they have referred her to the inco nurse so here's hoping they can help and once again thank you for the advice x
  5. Beate

    Beate Registered User

    May 21, 2014

    Yes they can and they should help, but it looks like they need a kick up the backside urgently! Tell them they have duty of care for a vulnerable adult at risk and if they still don't budge contact your local Alzheimer's Society or Carers Centre and ask for an advocate. They can also help you fill in the form for Attendance Allowance.


    Direct Payment is what the council should assess you for if you want to employ carers etc yourself. It's basically a personal budget that would allow you to pay for services. We didn't go down this route as the council provided the Day Centre and the carers, but it's open for everyone with an assessed need.
  6. Lynn3008

    Lynn3008 Registered User

    Jul 3, 2017
    Scorton Lancs
    Ah yes think we got rolling respite but couldn't use for home career rang s.s again asking for direct payment and yes I can have but only after we have been assessed so I mention the rolling respite and asked if we can convert to direct payments no can do as it's run out and I should have used when I had it as it appears that it's not needed. So now I have to wait for them to come and reasses AGGGGGG just going round in circles. I did ask how much longer it would be their reply was how longs a piece of string. I also pointed out that we had been assessed when mum first moved in but they have to be assessed again as she may now be better and not need respite. I did point out that mum is 84 has Alzheimer's and wasn't dead and what else did they need to know. And yes I did lose it a bit lol
  7. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    #8 Oh Knickers, Jul 5, 2017
    Last edited: Jul 5, 2017

    This is simply unacceptable game playing on the part of SS (Social Services). Time to get the organisations below involved in helping sort out this situation. May I suggest you find out who the head of SS is in your area - should be on the Council website. Write up a report and diary on what has happened over the years and ask then whether this is acceptable as you do not think so.


    Alzheimer's Society

    Age UK

    Ensure you have applied for AA(Attendance Allowance), Sounds as though you need higher rate which includes night time care. The above organisations will help you with the forms and the correct way to fill them in.

    As Beate said, some backside kicking is now needed.

    Best of luck and keep us posted.
  8. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    Meanwhile, back to the pads which I never did manage to extract from the NHS. Have a look on here: http://www.incontinencechoice.co.uk/incontinence-pants/disposable-pull-up-pants.html - other suppliers are available, this is just the one I used to get stuff for MIL but it may no longer be the cheapest. I checked out pull-ups (that's what I was buying) and the most expensive Tena ones are less than you're currently paying for pads.

    All the best wishes from me to you, it's a hard path you're walking.
  9. LadyA

    LadyA Registered User

    Oct 19, 2009
    Even though I'm not in the UK, I bought some supplies from completecareshop.co.uk and found them excellent. And don't forget, you shouldn't need to pay VAT on supplies like incontinence pads etc as your mum has been diagnosed with a long term illness.
  10. Slugsta

    Slugsta Registered User

    I had a similar problem with SS leaving mum's records to be seen by the first person who thought they might decide to do so (as it is now policy to close the case file after every encounter and not allocate 'clients' to any specific SW) and eventually sent letters to head of SS, local councillor and MP. It was actually our local councillor who put a rocket up the jacksie of SS!
  11. KPA

    KPA Registered User

    Jul 12, 2017
    Support for incontinence

    My mum has dementia and severe urinary incontinence. We can't give her disposable pads or pants as she shreds them and hides them behind radiators. However, the washable pants from Incontinence Choice and from Health & Care UK have been a great find. They absorb between 260ml and 350ml, and can be washed again and again.
  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    Well done, Slugsta!!
  13. Dayperson

    Dayperson Registered User

    Feb 18, 2015
    Just a thought, have you asked your memory nurse if they can help you out? We rang ours as mum was due a review of her CT scan and we've had no contact for weeks and he rang SS for us and they came for an assessment the next day.

    We were also told mum was on the list and waiting for someone to come, but the doctor said to say things are worse than they are. They wouldn't listen to us but maybe a medical professional who knows you may help.

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