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Mum lives many hundreds of miles away

Discussion in 'I care for a person with dementia' started by MaiaB123, Jun 12, 2019.

  1. MaiaB123

    MaiaB123 New member

    Jun 12, 2019
    Hi everyone, My Mum lives many hundreds of miles away from me. I live in Devon and Mum lives in Durham City. I have a young daughter who is sight and hearing impaired, she is at college in Devon and hubby travels with his work, which means I can't travel up to see Mum as often as I'd like. I do have 4 brothers who live fairly close to my mum, but they don't seem willing or able to chase things up. I do most of the chasing up from my home. Dad was Mum's carer until December 2017, when he was diagnosed with global heart failure and was given a year to live. it's taken me over a year to get care in place for Mum as well as dad, the care, (I use the term loosely) was 30 minutes for dad, 4 x per day in 12 hours, however, it was nearer a maximum of 5 minutes. They'd walk in, ask if Mum and Dad needed help, then leave after giving Dad his meds. I finally got a social worker out to assess Mum too, grudgingly admittedly. He then basically took 15 minutes off Dad to give to Mum, which means they are no better off really, no one doing housework, I can't access their bank accounts to arrange help with a cleaner, for example, that being said, if the carers were going in for 30 minutes 4 x a day, they could help with cleaning, washing etc. they're not even making sure that Mum is washed and dressed with clean clothes. Our GP recently asked if they could move near to me. I thought about it seriously and even spoke to our daughter's social worker. He informed me that whilst it could be done, it would probably take some considerable time. (Trying to be completely unselfish) I thought about the pro's and con's, whilst I myself am also disabled, I would still be able to visit Mum and Dad every day, keep an eye on them etc. even possibly arrange for cleaners, however, we live in a rural area of Devon, Dad would in all probability give up driving completely, which would mean that both Mum and Dad were completely reliant upon me, also, where they are now, Mum likes being in their current home, because she is surrounded by a place she knows, she can even walk to the shops. But I get more and more worried about them. I feel like banging my brother's heads together, love them as I do, Two years ago we lost our sister to cancer. She lived near them and would've kept an eye on them. I'm not sure Mum or dad would survive a big move. It's so very hard. Finally, I've heard recently from my brother that Mum has started falling regularly. This doesn't surprise me as the same brother told me recently that he visited Mum and Dad with his very large Staffie. Louis was wearing a bright blue harness. My brother left Louis in the kitchen, Mum went into the kitchen and screamed, brother ran in quickly and said she was talking about a blue carrier bag moving around on its own. I imagine (because our daughter has cerebral visual impairment and auditory processing disorder) that it isn't unlike this, in that the brain isn't processing what the eyes are sending to the brain. The images are getting mixed up perhaps. Apologies, this was my first post, we have so much going on and I feel so helpless, daughter disabled, disabled myself, Dad terminally ill, Mum Alzheimer's, in the last few years we've lost a few members of our family. We have never stopped fighting for our daughter for approximately 10 years in a broken system, we've got a petition together with over 125,000 signatures to stop reassessing people with lifelong disability and illness for PIP and have a group on facebook with over 2.5K people now, slowly but surely we are getting there, just wish we had a magic wand. Thank you if you read this far.
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Hello @MaiaB123 welcome to DTP

    It sounds as though you have your hands full looking after your own family and that SS are letting your mum and dad down. Are the care agency one chosen by SS? I agree they should be more efficient. The agency I chose for my dad managed to get him washed and dressed and his bed stripped, washing in and out of machine and hung up to dry, his medication given and they left him with a cup of tea and toast. Pots would be washed on next visit and kitchen kept clean and tidy. I had LPA for dad so I was able to pay for a cleaner/companion for him too.

    SS offered direct payments so we could choose how we spent the money once his budget had been decided. Have you been offered that option?

    Is there any chance you could get LPAs for your mum? It's important to do this if you can - it makes things much simpler. If you did it jointly and severally with your dad either you or he could access your mum's money to pay for the help she needs.

    I agree that moving your parents at this stage would be difficult and traumatic for both of them and could add to your mums confusion. You would also need to consider how easy or difficult it would be to access care in your area. It seems to be more difficult in rural areas.

    I lived near my dad and although it was OK in the earlier stages looking after dad as his needs grew would have been impossible without help from a good, dementia aware, team of carers. It's a lot for one person to take on. I do wish your brothers would step up to the mark but I used to wish that of my own siblings and they seldom offered any help.
  3. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Hullo and welcome to the forums Maiab123. Beyond what Bunpoots has suggested about power of attorney there's not much I can advise. Have you asked the dementia helpline for free professional advice on what you can do to get social services more involved or to sort out care agencies? I've had a few problems there too, but can sort it out at home, and maybe you need an advocate.
    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm
  4. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    Hi MaiaB,
    Sorry to hear you're having such a hard time. I help to care for my mum , from a distance, tho my sister who lives locally bears the brunt . It sounds like SS haven't helped, they shouldn't have taken time from your dad, but added more for your mums needs. Can you get back on to them and let them know what help she needs . We have carers for mum and spent about 2 years with them doing very little, it got better when we started listing what they needed to do, so it may be an idea to talk directly to the carer/agency to clarify. You may have done this already. Getting POA for your mum would be a really good idea if you don't have it already. Perhaps, as your dad is poorly , it would be useful to have your brother named too for your mum so he/they would be able to help, if they ever step up. It seems like you have enough to do so I wouldn't suggest moving your parents near you. Look after yourself.
  5. MaiaB123

    MaiaB123 New member

    Jun 12, 2019
  6. MaiaB123

    MaiaB123 New member

    Jun 12, 2019
    Yes, my hands are well and truly full, but it doesn't stop me worrying, about parents and our daughter. What is an LPA? TY MaiaB123
  7. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    LPA is Lasting Power of Attorney. It gives someone else permission to help with or take over someone else's finances if they are unable to do it themselves usually due to illness including dementia. You can do it yourself online although some people prefer to use a solicitor which is expensive. I did my dad's for him.


    This links explains how to. There are two types. One for finance and one for Health and welfare. I found both were needed eventually but the financial one was vital.
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi @MaiaB123
    A warm welcome from me too
    Is there a detailed care plan in place for each of your parents ... I am so disappointed at what you describe ... However busy the home carers may be, they should give each person the time and tasks alloted
    Bunpoots mentioned listing what is to be done during each visit and that's exactly what I did ... I had a sheet for each and noted in bullet points what needed to be done, in what order, where things were kept and how and where dad was to be left, plus some hints on how best to approach him .. it was simply a guide to what had been agreed in his care plan but geared specifically to him
    I did wonder whether the carers would baulk at my 'instructions' but actually they were pleased to have the visit clearly mapped out so they didn't have to guess ... It did generally mean that the tasks were done and if they switched the order I didn't mind as long as dad was OK
    It did also help with the issue of some carers not quite grasping that asking open, general questions would simply lead to a refusal or negative from dad or an 'I'm fine' type response .. the good carers just got in with what was on the sheet assuming dad would agree ... of course he sometimes refused or didn't co-operate but that's going to happen

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