1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. mancmum

    mancmum Registered User

    Feb 6, 2012
    388
    I had just wanted to check that we were not re-inventing the wheel

    Yes I looked at it just to check that it was indeed necessary for us to get working on establishing bookable respite as right.

    I had just hoped that someone might have mentioned it in the manifesto.

    Yes, I can understand that what people are trying to do is to remove the fear around the first few stages of Alzheimers. I am convinced that the only reason my Dad is as good as he is ...and now he has no short term memory ..is because he is in a family setting. My aim is to keep him going for a long as possible in the hope that when his capacity is reduced it will coincide with a time when his body is also failing. At 82 he can walk 4 miles but within 10 minutes of leaving a care home for a weeks planned respite had forgotten that he had been there. But I need respite to enable me to do this. I don't really want to be doing the circuit of lunch clubs and memory groups and older people's art clubs - although I think I am learning really useful stuff from this for my future.
     
  2. Essie

    Essie Registered User

    Feb 11, 2015
    566
    #102 Essie, Mar 23, 2015
    Last edited: Mar 23, 2015
    I think that's a really good point Redlou and very true too about the often grim reality over the 'TV advert' version of dementia. One of the 'unrealistic' points that always irks me is when sites like the AS and AgeConcern etc. say if you're a carer "get outside and go for a walk when things get too much" - really??? when the person you care for can't be left alone at all?

    So often, as you say, the approach is all about the sufferer and their needs and as for us carers, well we haven't got dementia so we must be fine! Dementia is a diagnosis that is life changing for more than just the diagnosed person - for the spouse, daughter, son, DIL, SIL etc etc it is also a mammoth shift of all aspects of life, often for many, many years and I think a shift in perspective of the huge task undertaken day in day out by carers across the country (and the world) is well overdue.
     
  3. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,972
    Suffolk
    RedLou, I agree with you. Nobody seems to show the difficult cases that feature so frequently on here. Shy aren't we helped more? We must save the government millions, yet what do we get for it. Tonight, accusations I've stolen his money!!
     
  4. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    Best look behind the books on the shelves - that was always a favourite hiding place of William's! ;)
     
  5. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,972
    Suffolk
    No, no, Lady A. He hasn't been able to deal with coins, notes, cheques credit/debit cards for years. It's just the idea of money.
    I've been doing all that for over 20 years , long before dementia reared it's ugly head, and about 3 years ago he couldn't deal with coinage.
    It's kind of money in the widest general terms!
     
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    Same with us - but William used to get a spending allowance each week, and sometimes he'd hide that. Or he'd have given it to someone!
     
  7. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Securing More Respite

    After my day trip to see my mum and brother I begin the next stage of my fight for respite. Currently we have carer 'sits' three mornings a week from 10 until 1. Today I will assert the need for a further sit on Wednesday evening from 6.30 until 9.30 so I can attend Buddhist Meditation Classes, once again.

    I also intend to assert that my day trips to Coventry need to be monthly, on the third Monday of the month. Mum is 94 now and I see how frail she is each time we visit. John, my brother, still seems strong but rarely gives any sign of recognition as his Alzheimer's is now so pronounced. Good to seed that he still enjoys a bar of chocolate.

    The more difficult issue to resolve is a period of significant respite: my entitlement to the local formula of one week off in seven. This will be explored at a meeting with our social worker on Friday morning. It is helpful that my Admiral Nurse will be in attendance to support my need to have a decent break away from my caring duties.
     
  8. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
  9. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    I find the respite issue quite difficult to deal with, for me.....as I don't live with mum (nor she with me), it might be said that all the time I'm not there is respite. And yet I know that emotionally, it isn't. I'm getting totally overwhelmed with worrying about what's happening when I'm not there, knowing mum can't cope with anything unexpected.....how do I translate that into a need for respite?? Or actually, is she very close to needing residential care? (There, I've said it :eek:)

    Lindy xx
     
  10. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Hi Lindy - I hear what you are saying but .. I am a long distance carer for Mum, easier now she is in a CH but for some years I spent my time sorting problems and taking multiple phone calls each day and sorting carers etc. Was I still a carer when I wasn't physically with Mum or dealing with her problems and calls? Yep! Because it was still affecting my mind and activities as I had to tailor them round even something so simple as being contactable by phone and in a position to check that Mum's carer had arrived for example. Even just over 18 months since Mum went in to care, I still sometimes look at the clock and think I need to phone or I go into the countryside and worry I don't have a phone signal.!

    So you need respite where you can be sure that those and other responsibilities and issues are the responsibility of someone else. You won't forget them but you won't have to deal with them. You need time for you and your family.

    I think you are probably right that you are moving towards the need for residential care for both your sakes. However, like taking respite - however much needed, many stories here will demonstrate that it isn't easy. Even if it shows that in hindsight (as with my Mum) we should have taken that route sooner...

    I think sometimes we don't understand what "qualifies" as being a carer - I find this helpful:

    Why do carers need support?

    Carers are the largest source of care and support in each area of the UK. It is in everyone’s interest that they are supported.

    Taking on a caring role can mean facing a life of poverty, isolation, frustration, ill health and depression.
    Many carers give up an income, future employment prospects and pension rights to become a carer.
    Many carers also work outside the home and are trying to juggle jobs with their responsibilities as carers.
    The majority of carers struggle alone and do not know that help is available to them.
    Carers say that access to information, financial support and breaks in caring are vital in helping them manage the impact of caring on their lives.

    Carers experience many different caring situations. A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

    Despite these differing caring roles, all carers share some basic needs. All carers also need services to be able to recognise the individual and changing needs throughout their caring journey.

    Carers often suffer ill-health due to their caring role. To care safely and maintain their own physical and mental health and well-being, carers need information, support, respect and recognition from the professionals with whom they are in contact. Improved support for the person being cared for can make the carer’s role more manageable.

    Carers need support to be able to juggle their work and caring roles or to return to work if they have lost employment due to caring.

    Post-caring, carers may need support to rebuild a life of their own and reconnect with education, work or a social life.

    With an ageing population, the UK will need more care from families and friends in the future. This is an issue that will touch everyone’s life at some point. Carer support concerns everyone.


    Taken from http://www.carers.org/node/35517

    So yes, you need respite and you need to maybe look as this being a precursor to permanent care.

    Hugs, its not easy x
     
  11. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    I hope this is not considered off topic, but I personally feel that carers need a carer! We'd be so much better at looking after our loved ones if there was someone out there to support us. My mum is self funding so the only "support" I've had is a few leaflets chucked at me. If only someone would talk me through the concept of care plans, respite bookings, medication and the whole host of other stuff we have to deal with and help me understand it. TP is brilliant for that but if only SS and/or the Alzheimers Society recognised that totally overwhelmed carers are of no use at all to those we care for. Even a little bit of moral support goes such a long way to avoiding that crisis.

    Almost a year ago today I thought my mum would never return home again after a particularly difficult period in hospital. I did bring her home (she lives alone) and we've managed - thanks in no small part to this site. Even though she's self funding, her money won't last forever so that little bit of support here has, in effect, given the local authority another year when they won't have to chip in with care home fees (eventually). If only they could see the value (in hard cash terms if necessary) of supporting carers to care.
     
  12. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Thank you Celia, that's very helpful. I know I need respite, but it's arguing for it, against mum's wishes, that is so hard :(

    The dam is beginning to break for me, though. I think that it's since we had the social work assessment, ironically :rolleyes: Up till then, I kept going because there was no alternative. Now, I want the SW to recognise mum's needs as well as mine, and I want to know when that's going to happen! Unreasonable of me, but there you are....

    All the best and thanks again :)

    Lindy xx
     
  13. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Oh Liz57 how I agree with you! a hand to hold while you wade through all that you have to deal with which so often starts 'out of the blue' after a fall or infection and you're suddenly plunged into a role that you are so completely unprepared in every way for and yet you just have to do it. Something like a district nurse but for the carers would be great - coming round once a week to say 'how can we help?' with practical, medical, financial etc. advice. Somehow we're just supposed to know it all!

    And Lindy, Well done for saying 'it' - I remember that stage with my own Mum and it is a hard point to reach. I just wanted to say 'good luck' as you possibly embark on the next stage of this journey and do be assured, so many people dread the thought of a care home either for themselves or for a relative but you will see from posts on TP that they can be a truly positive move for all concerned.
     
  14. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    Lindy - are you arguing for it against your mum's wishes, or against dementia's wishes? Would your mum, in her right mind, have supported you in having a week or two off? Would she have wanted you to sacrifice even a week to her care?
    I keep thinking about me and my daughter and I've told her that if I get dementia she's to dump me in a nursing home and walk out. I don't want her to endure some selfish fiend inhabiting my body.
     
  15. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Thank you essie :) I hope to get some extra care in for mum....but all things being equal, if she carries on as she is, residential care may best meet her needs. I hate to think of her sitting alone for so many hours, with no stimulation, not thinking to eat or drink, and possibly dirty. She is still at a point where positive companionship can perk her up....it's what she needs.....if only she knew it. And if only I can persuade the social worker......xx
     
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    There's the rub, RedLou......Mum has always been a very private person, dutiful and quiet......not really one for holidays. It's complicated, she has basically sacrificed a lot of her life to other people's care. It's what she knows. Her response when I've returned from holiday in the past has often been along the lines of 'Well, was it worth it?' Before dementia, she would want me to be happy, but for her, holidays and breaks wouldn't really enter the equation.

    She is a lovely lady, but she sets the moral bar very high xx
     
  17. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    That's the rub, sweetie. Don't beat yourself up. If you need a break, you need one. It's not selfish. Do we consider taking a break from any other job selfish? We consider it necessary.
     
  18. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Steady Progress

    I think, and you never count your chickens here, I have now gained another three hours a week respite and a night sit once a month. These arrangements appear to have been confirmed in an E Mail from our social worker yesterday. Just to be on the safe side I will confirm things with the Care Agency to ensure they have approval to add to our current Care Package.

    I have decided to see how Maureen copes with the new arrangements before exploring my entitlement to significant respite. The local formula of one week off in seven is a medium term aim and this will be explored once the new arrangements have been in place for a few weeks. I realise that I need to be careful not to be seen as a pain by social services with ever increasing demands for respite. More importantly: I need to be clear that Maureen is comfortable with any changes in our Care Plan.
     
  19. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Apologies - I feel like I've neglected this thread over the last week, because of Mil being so ill, I've had little chance to do anything :(

    However - a catch up.

    The sister 'home' to the EMI residential place where Mil goes for day care have confirmed that they are taking part in a 'pilot scheme' through the LA to hold a bed available for bookable respite breaks - just one bed, and only a pilot scheme at the moment - but a start! I was told, by Andrew Figiel, that there would be discussions with 'several homes' though, so am hoping that its a case of one bed in each of several places - not just the 'one bed' right across the county! However, as I am still waiting for the phone call from the 'head of care for the elderly', that I was promised I would get on Monday, I can't yet be clear about the details :(

    I also spent a considerable amount of time yesterday, talking to the reporter from the local paper - he contacted me, saying that there had been a 'response' to the original piece, and they wanted to do a follow up. I said that I'd been speaking to a lot of other carers on TP, and that this issue seems to be one which is affecting carers in several different area's across the UK. I told him about #FightForRespite, how we were trying to gather info to put together a sort of 'statement' letter that emphasized the need for availability of beds - I said that the new care act can promise both assessments and funding, but that the politicians and others involved needed to recognise that without something that MAKES local Authorities responsible for ensuring availability, then neither of those two things were much use. I did emphasize that if LA's are chosing to close council run homes that previously offered bookable respite, if they are chosing to pass on care to private providers, then the LA's NOT the private home have an obligation to ensure that an acceptable alternative is offered, that they can't wriggle out of it by saying 'Well - its up to the private homes to decide if they will provide this service'. I also passed on the news about what this council are doing, but added that I had no idea of the extent of this pilot scheme and was also concerned that carers be informed about the fact that bookable respite is now available - no use offereing it, if no one is informed that its there for the taking, is there? Hopefully, a follow up story will make sure that the new 'availability' is brought to the attention of carers - so no chance of a claim of 'lack of interest' (cynical, me?).

    Jeremy Vine had an interesting section on his show yesterday about how agency home care staff are being seriously underpaid due to the issue of trael time, and the impact on dementia sufferers was especially mentioned - thinking about contacting his show, and seeing what can be stirred up there, too - what do you guys think?
     
  20. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,207
    Merseyside
    I'm glad you've got the overnight respite sorted GL.

    Ann I reckon the Jeremy Vine show would jump at the chance to talk about this in the run up to the election.
     

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