1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

What is on a Carer's Wish List?

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

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,284
    Female
    South of the Border
    This is not a petition or a campaign, it is just me looking for ideas.

    I have a local politician very interested in furthering the cause of Carers in this region, and raising general awareness.

    She has asked me if I will write a blog for her - to go on her blog - I have said I will.

    She has also asked if I am willing to speak to media - yes to that as well.

    Then I got to thinking "What exactly IS it that I am looking for?" and what are we all looking for.......

    Thoughts on this, please?

    Here is a start - mine are:-

    1) More information on how things are perceived by the person with dementia ( to help me understand their world)
    2) Short term respite - there is nothing in this area at all.
    3) Government acknowledgement of what we do - Carer's Allowance for all ages regardless of State Pension - and even an enhanced allowance for those caring for PWD as they are victims sometimes more than the PWD.
    4) 24/7 Call line, similar to Samaritans, but specifically for carers of PWD.

    what are yours?
     
  2. malomm

    malomm Registered User

    More training on what dementia actually is for the so called professionals we often have to deal with on a day to day basis.
     
  3. PalSal

    PalSal Registered User

    Thanks MaryJoan got it now.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,755
    Female
    Scotland
    I believe a lot of what we want and need is already out there in most cases but if you are new to caring for a PWD then you don't necessarily know it is there or how to access it.

    Example:

    On the bus last week I chatted to the woman next to me who was caring for her mother who had mixed dementia. She was uncharacteristically nasty and aggressive to this daughter who was understandably distressed. The mother had been discharged several years ago from the Memory clinic with Aricept. Her GP was hopeless.

    I told this woman that she could go back to the consultant and have the medication reviewed either by self referral or through her GP. She had no knowledge of this and thought they just had to struggle on until the mother died.

    I take John to the same clinic where I asked not to be discharged and go every six months with him. I know it is mostly routine but I feel the consultant now knows him and myself very well and should an issue arise I can't cope with then I feel I have her support.

    My guess is that many of the services in place are understood only hazily by carers already stressed who cannot take it all in. Perhaps regular visits eg every six months to the home to see how things are going would be of great help if only for information and advice.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    9,902
    Female
    South coast
    @Jorbin has started a thread about having an information pack at the time of diagnosis https://forum.alzheimers.org.uk/threads/information-pack.110035/

    I think this could be a real help to PWDs and their carers.
    It could contain basic information about dementia (like the Alz Soc fact sheets), information on local services available, advice on applying for benefits like Attendance Allowance/PIP, Carers Allowance etc and where to go to help help for medical problems in the future, as a minimum.
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,146
    Thank you. I would like a named social worker who takes a close eye on the situation. Information about what happens if I am too ill to cope any more at short notice. Nappies free on prescription without the demeaning incontinence measurement business (if you have not encountered this you are lucky!). Thank you for doing this.
     
  7. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    I really like the idea of enhanced allowance for carers....but for carers of anyone with an illness not paid for by NHS. I believe MS patients are in the same position as someone with dementia? When my late husband had cancer, I gave up teaching and had just £65 a week, I think it was. But we didn’t have to pay for his care, or respite.
     
  8. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Day care available in local nursing homes. If I had my way they would not be given a licence unless they provided day care as well.
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    2,146
    I mean, do we have human rights as carers? Gxx
     
  10. fortune

    fortune Registered User

    Sep 12, 2014
    143
    A realistic government response to meet the financial impact of caring. Who can live off carer's allowance? Who has moved the PWD into their home and facing massive heating bills? Who has moved into the PWD's home to care and lost PPR exemption on their own home? Who is both carer and attorney and facing legally impossible conflicts of interest? The recent government consultation on dementia care has basically an empty page on carer's finances.
     
  11. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,471
    I would like a bit more recognition and it should be easier to get carers allowance without this never ending round of claims taking 3 months before being refused and then having to go through endless useless phone calls and being fobbed off by people who are obviously bored with their jobs.

    I would like a bit of recognition and even a thank you from my sibling for keeping his father out of a care home for the last year while he is able to carry on with his life unaffected by his fathers plight.

    I would like a bit of help now and then.
     
  12. Rosie4u

    Rosie4u Registered User

    Jun 22, 2017
    219
    Female
    South Manchester
    I would like a ‘handbook’ for the carer with the diagnosis and a course to learn how to properly look after someone - though in my case by diagnosis I couldn’t leave my OH on his own.
    I would also like Alzheimer’s DISEASE to be recognised as a medical condition needing regular monitoring and support not a social issue
    I would also like state funded convalescent / strength building / respite for people with this illness And YES I think taxes should go up to pay for it - your care should not depend on your own finances .
    Sorry that got into a rant:D
     
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,841
    Nottinghamshire
    I agree @Rosie4u . Alzheimer's and othe dementias should be treated as a medical and not a social problem and taxes have to go up to pay for it.

    I would like someone else to look after my dad so I can be his daughter. Even if I get someone in to do the hands on caring (which I will) I still have to act as his administrator and project manager. It's so time consuming I don't have time for a relationship with my dad anymore.
     
  14. kindred

    kindred Registered User

    Apr 8, 2018
    2,146
    I am so grateful to you for doing this survey! Gxx it's raising such important things for us.
     
  15. worried2

    worried2 Registered User

    Aug 1, 2010
    27
    End the unfair financial treatment of those suffering from dementia relative to other medical conditions. Pool the risks and everyone shares the costs.
    For those combining caring with working: the right to flexible / part time working and paid carer’s leave when emergencies occur.
     
  16. kindred

    kindred Registered User

    Apr 8, 2018
    2,146
    I so so agree. Gx
     
  17. 2jays

    2jays Registered User

    Jun 4, 2010
    11,593
    West Midlands
    More recognition for carers whilst caring

    Especially financial

    recognition of a carer once they finally don’t need to be a carer. Full time carer may not be in a position to return to work, may loose where they live, and struggle with life after caring

    again it’s mostly to do with financial issues let alone the emotional issues.

    Less brick walls put up against carers when they are seeking support just for themselves

    Less guilt tripping from those here to help. We have enough guilt already, even though it’s unecessary guilt.
     
  18. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,284
    Female
    South of the Border
    Everyone!

    Thank you so very much - you are bringing up thoughts I could not have imagined - keep them coming, the more we get and from diverse people and situations - the better it is to paint a picture.

    Do lots of us feel pushed into a corner we can't get out of? I do, I know

    thanks again
     
  19. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    An understanding that not all dementia sufferers are elderly and retired. Those of us with younger partners-who have had to stop work early and lose their income- have often had to give up our own careers early. This also has a huge knock on affect on a carer's occupational pensions-for ever. We still have children at home and mortgages to pay-but downsizing would result in losing even more capital. I know I'm not the only one to have given up a hard fought for career -which is tough in itself-and struggle to try to build a future for my children. My husband's illness has cost me more in lost income than him-how is that right or fair?
     
  20. kindred

    kindred Registered User

    Apr 8, 2018
    2,146
    This is magnificent. Thank YOU. And yes to the pushed into a corner. A kind of slow pushing into the registered carer role, never asked, just gently pushed and then demeaned and demoralised until no strength to have a point of view any more. Gx
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.