Questions for Election Candidates

Discussion in 'I care for a person with dementia' started by Mousehill, Nov 11, 2019.

  1. Mousehill

    Mousehill Registered User

    Nov 28, 2018
    I'm resigned to the fact that sometime soon, the canvassers will be back knocking on doors!

    As carers, what issues will you be raising with them (if any)?

    In general, with mum's dementia, I feel as though the Local Authority has just left me to flounder. I'm so glad I decided to give up work and I now spend at least 43 hours a week with her (or running errands etc) but as everyone knows, to say it can be harrowing is an understatement!

    Everything useful I have found out about dementia has been from the Alzheimer's Society website and from you wonderful people here. These are the points I'd like to put to anyone brave enough to knock: I'd like to hear what other people would like to ask too.

    1) However you work it out, there's a massive disparity in the Carer's Allowance of 66 pounds per week and the 600 pounds a week that the state will pay for care fees. I'm washing, dressing, assisting with the toilet and doing housework, paperwork and laundry and shopping for mum. I get that nursing homes have more specialist equipment that one day mum might well need, like hoists, changing tables, round-the-clock care etc., but financially, I'm damn lucky because OH's contribution clears the Council Tax and utility bills, so all the 66 pounds a week has to pay for is shopping, car fuel and any add-ons.

    What I am providing that a nursing home couldn't, is bespoke care for mum because I know her foibles and likes and dislikes and moods better than anyone alive (dad died 2 years ago) and when I'm with her, I can judge whether she wants to be alone and quiet while I get on with housework, or doing something she can join in with, like chopping and mixing when we bake, or 'helping' me with a simple crossword.

    2) What I would have really liked is some practical training provided (not to be paid for from my 66 pounds a week - woohoo!) to help me really understand dementia and techniques around safe lifting, use of mobility aides etc. In reality, I've found that contacting the local authority is more hassle than benefit. Initially, they just linked onto the fact mum's eyesight isn't good and provided lots of aids that (I told them at the time) wouldn't get used because she can't make a brew, use the cooker or get in and out by herself anyway.

    I had no idea about UTIs - which with hindsight is crazy! There's so much I needed to know that I feel I was left to figure out. For me, I'm happy to take it on, but I know that's not because I'm some sort of superwoman, it's because I happen to be childless; have a very supportive OH; live near mum; born without squeamishness and have a close relationship with mum, so on the really and days, I get down but I have faith we'll get up again. That's all down to circumstance - not skill, talent or some sort of innate goodness and so any system needs to recognise that everyone's circumstances differ and the help available should be flexible to reflect this. For me, better practical training: for others, perhaps additional financial support for bringing in care over and above Attendance Allowance. For others, perhaps advice on choosing the right carers or even training on how to raise concerns with a care team if the service isn't up to standard.

    3) I've got mixed feelings about paying for care because on one hand, mum and dad saved hard for their rainy day, but if being widowed, aged 86 and coming up to (we think) the final stages of dementia isn't a 'rainy day' than what is?! My brother and I have no moral right or entitlement to their savings because we've done nothing to earn it. One the other hand, it does feel unfair because dementia is a disease, not a side-effect of age and the NHS provides care and treatment for so many other things....I'd be totally lying if I said I'd rather inherit than not. It does put a strain on sibling relationships though, because there's only 2 of us and even now, it's pretty clear that while I'm the one who has given up my job and is doing the lion's share of the caring, the Sibling is adamant that we'll only consider a nursing home if and when near-hospice standard care is needed. Again, we've got a great relationship, but I can see how situations like this can easily tear families apart. We're lucky in that we both live very close to mum, but I can imagine how hard it must be in a family where some children live near, some far away and all have differing levels of commitment other than looking after mum or dad. Everyone knows that when money is chucked into the equation, it's amazing how quickly resentments and past conflicts can re-surface. Maybe guidance and realistic advice for families from a neutral party on how to deal with divvying up responsibility and financial support should be more readily available.

    ;) By now, the poor candidate will be shivering on the door step, wishing he / she hadn't asked!!!
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
  4. Pete1

    Pete1 Registered User

    Jul 16, 2019
    Hi All, the House of Lords Report makes salutary and somewhat bleak reading (thanks for posting @Palerider), but it's nothing new (as the report itself recognises), many issues (raised by the Dilnot way back in 2011) were supposed to be addressed by the Care Act 2014 the key components of which were to all intents an purposes kicked into the long grass by the Government. It is a problem that has been allowed to, and will continue to, grow unchecked. There needs to be radical change which will sadly be unlikely as it requires a massive injection of funds as the report concludes:

    '......addressing the increased pressure on unpaid carers and local authorities and the unmet need that has developed since then, around £8 billion a year in additional funding will be required for adult social care'.

    The other conclusion that will resonate with all you good people out there:

    'As fewer individuals have been able to access local authority funding, greater pressure has fallen on family and friends to provide unpaid care'.

    For all of us that have been or are involved in the care system it is all consuming, effecting our lives daily with many at breaking point due to the ineffective system of support - rather sadly for those that are not directly affected it probably isn't a priority otherwise you would like to think that Government have addressed the issues. The question to any candidate should be why will the new Government (whichever party that may be) will do anything to address this situation when nothing has been done in 8 years apart from watch the situation degrade (despite repeated promises in manifestos)?
  5. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    I will think on this, although I am in my mid fifties, since my mid twenties I have always lived in strong one party constituencies and in towns on the edge of the constituency, so I have never had canvassers at my door for general elections. I would welcome the chance to meet one and raise our concerns and ask what their party plan to do and how they will fund it
  6. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    @Mousehill, you do a fantastic job for your mum, but if I were you I would give the canvasser a good b#ll#cking for the complete stasis regarding care since Dilnot - politicians absolutely deserve it. Carers need to share experiences with MPs - otherwise nothing will change. Dilnot said this morning on Radio 4 that there isn't enough noise around dementia - please shout about it. The situation will get worse if it's not dealt with - there will be 1 million dementia sufferers in 2025 and 2 million by 2050.

    @Palerider thank you for the report.
  7. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    #7 Soroptimist, Nov 12, 2019
    Last edited: Nov 12, 2019
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Ok I’m ready with the facts - etc.... bet no one canvases now!!

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