What is on a Carer's Wish List?

Discussion in 'I have a partner with dementia' started by maryjoan, Jun 24, 2018.

  1. Bee.quilt

    Bee.quilt Registered User

    Dec 29, 2017
    Named person who visits/or available at regular times. Some obligation for GP to monitor rather than deal only on ten minute appointments. Dementia to qualify for care in the same way as coronary disease or cancer.
    Brilliant that you are able to take on this task. Many thanks. Best wishes. Bee
  2. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    Thank you @2jays for highlighting this.
    My Mum died in February, I moved in with her 6 years ago to look after her, long story short it's likely I will be homeless in a few months as I'll probably be "unemployable" after being a carer for those years
    I've not even begun to grieve fully yet, never mind understand what the h**l hit Mum - or me during the 4 years dementia was apparent.
    How, at 61, do I even begin to "start again", away from our lovely neighbours, this safe place where I live and face the hard reality of the DWP and the relentless, unmerciful task of job hunting whilst I'm on another planet?

    I know this sounds over dramatic but it IS the reality for some of us.
    We need help - but I know we're not going to get it.
    The most recent organiser at our carers group suggested, two days after Mum's funeral, that I become a paid Carer...
    I don't know exactly what I'm asking for, I'm too immersed in my grief.
  3. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    Sorry @maryjoan meant to say Thank You to you too!xxx
  4. CaringDaughter

    CaringDaughter Registered User

    Sep 22, 2013
    Prudence, I'm so sorry to read about your situation. I'm now in your situation and a similar age - I do agree that support for family carers needs to be there throughout. I wish you the best, and send a virtual hug to the bottom of your pit of grief. x
  5. worried2

    worried2 Registered User

    Aug 1, 2010
    Thank you maryjoan for doing this. Carers save the government a fortune, but often suffer health wise and financially - losing out on pay, careers prospects and pensions. It can then be difficult returning to the workplace once caring role ends. Most of us are willing carers, but the difficulties faced should be acknowledged and more support provided.
  6. PalSal

    PalSal Registered User

    I guess you should add that the laws around disability be reviewed. If a company fires a employee and then it is discovered that person has Alzheimers and cannot perform on the job, they should be given job compensation, like if they had cancer or MS or whatever. the article I posted shows that many early on sets are denied their financial security with their illness. That is why the disease must be discussed and awareness made. It is not only older people who get Alzheimers and when it affects a the young in their prime it has devastating effects on income to young families.
  7. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    CaringDaughter, thank you so much for this, particularly on such a very sad day for you.
    I'm so very sorry you're in a similar situation. I'm hoping to find a way through this and will post anything helpful when I do.
    Thank you for the hug, I'm sending lots to you, you need them right now. (((X)))
  8. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Thank you for doing this, Maryjoan x

    Consistency of care. My Mum in law has had so many different social workers and consultants. Each time you have to start from scratch, going over the history and the details, and often you encounter professionals who dont have the time (or in some cases even the inclination) to really get to know the PWD and decisions are made based upon the 'experts' own opinions and past experiences, not on the needs and situation of the individual pwds. Information gets 'lost' each time a new 'expert' becomes involved, which leads to additional stress and misery both for carers and the pwd, and sometimes to quite serious mistakes being made. This business of appointing a 'new' social worker each time a crisis hits, but having no named SW in between, is so wrong.

    The whole system of financial support needs overhauling. Carers allowance is a total joke, in terms of the amount paid to carers. The fact that it is stopped, if the pwd is in hospital for a certain length of time, is wrong. The carer can't just go and get a job to tide them over whilst waiting for discharge, applying for other benefits whilst waiting for discharge is a waste of time, as it takes so long - and the applications are so often refused, anyway. And besides which, most of us find that whilst our pwd is in hospital, we actually do just as much caring and have just as many expenses.

    The financial impact on carers when their pwds either pass away or go into residential care, and the carer is often left emotionally, physically and mentally wrecked. Both the health and the finacial costs must be considered and some system of support put in place.

    Care costs - the pwd and their family meet 2/3rds of the anual cost of dementia care. I don't know of any other illness where the NHS and local authorities place so much of the financial burden on the sufferer and their family. From inadequate continence services, to the total ingnoring of so many other costs (hospital beds, mattresses, incontinence aides, wheelchairs, increased utility bills, laundry bills, etc. etc) through to the costs of day care, respite and residential care, the pwd and their family are penalised financially.

    A legal obligation for the local authority to provide adequate day care and respite services. Carers assessments that identify the need for support are totally useless when the support services are cut or completely stopped in so many areas across the country, and it is impossible to access day care or respite.

    CHC is a joke. Those in charge of deciding if its to be awarded operate from the basis of 'saving costs', not the basis of awarding care to those in desperate need. The rules and criteria are too open to interpretation, making it so easy to be refused, no matter what the evidence or issues. It has to be tightened up, clinicians opinions should be given more weight than the opinion of the assessor or health board managers, and the whole process - including the process of appealing - needs to be simpler and faster.

    Local authorities having the right to set the limit for residential care costs so far below the actual costs charged by the homes. This limits choice of home for the family and pwd, and often leaves the family paying incredibly expensive 'top ups' or having to travel miles to se their loved one. More weight given to the pwds right to be placed close to family and in a facility that is chosen on the basis of providing the most appropriate care - rather than the cheapest.

    More honest info for carers, right at the start. The damage and difficulties caused by the lack of openess is huge. The issues may be incredibly difficult to even contemplate, but they still have to be faced. Carers have a right to be prepared properly, to have some idea of what they might encounter, so they can prepare themselves mentally and have the information to make the best decions for the pwds, right from the start.

    Thanks again, Maryjoan x
  9. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Thank you so much for this considered response - it highlights so many things that are completely wrong and unacceptable with the 'cobbled together system' that is currently in operation and is not fit for purpose. I did not expect such a huge response to my question - and I certainly hope it will all help in what I am attempting to do.
  10. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    No thanks you maryjoan for doing what you are doing
  11. Rosie4u

    Rosie4u Registered User

    Jun 22, 2017
    South Manchester
    I think its the assumption that you will care - by yourself with no training or help.
    Youre right - its a corner
  12. kindred

    kindred Registered User

    Apr 8, 2018
    Yes, what happens if we actually refuse to care? I mean, like can you refuse???
  13. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Legally and theoretically, yes you can, but there is a lot of emotional blackmail and once you start its difficult to get out.
  14. sah

    sah Registered User

    Apr 20, 2009
    Always felt like you could only refuse once you -the carer- had completely broken down.Yes, legally you can-but.....
  15. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    Absolutely agree. We are not responsible for our parents needs, it is entirely voluntary.

    Some volunteer, some don't, it's as simple as that and yes when you do start it is difficult to get out of.
  16. Rosie4u

    Rosie4u Registered User

    Jun 22, 2017
    South Manchester
    I was main carer for my aunt - reluctantly and from a distance but I was expected to drop everything for issues / problems.I did my best but it wasn’t good enough. I finally broke down as she was reluctantly being moved to a care home as my husband had just been diagnosed with Alzheimer’s and as I was his main carer I couldn’t be hers.Problem was , they all then stopped taking any notice of what I said.
    So yes - you can stop being a carer but I agree the justification in others eyes seems to be a meltdown.
  17. kindred

    kindred Registered User

    Apr 8, 2018
    Outrageous. My Oh had carer breakdown written on his hospital notes. Believe me, and you know, if anyone off the street as it were had to endure what I did for nearly five years, they would have melted down, broken down or whatever. Dear God, do we have to be driven to the limits. Yes, I know, we do. It's scandalous. Gxx
  18. acorns

    acorns Registered User

    Jan 25, 2018
    Thanks for bringing this up. The helpline in particular would be very useful esp at weekends.

    My 4 ideas are:
    - caring at weekends can be scary as your pwd is so frail. I would like full sharing of information with main carer from dr eg sharing of test results, things to look out for. (Luckily I ignored the drs who were playing things down and dialled 999 this weekend and turns out my mother had sepsis ...)
    - the x million carers need a higher media profile to highlight their needs (- dementia itself is now thankfully well covered by the media but not caring)
    - a national post-care programme to help us when our role comes to an end - a framework to assist us in step by step re-integration into society - eg placements at national/international businesses for carers (no matter how old) to help back into the workplace; adult learning classes to include hobbies, local support to make sure we aren't hiding away on our own ...
    - drs to be more proactive in trying to improve the lives of the elderly pwd - no more 'just keeping them comfortable', 'there's no point in trying that because ...' or 'you can't expect much at that age'.
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Thank you one and all for your contributions - I really do appreciate them and acknowledge the time and thought that has gone into them. AS have kindly advised me on thoughts as to how I can take this forward, and I am happy with this.

    Thank you again

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