Levelling with Invisibles

Discussion in 'I care for a person with dementia' started by whoknows, Nov 21, 2015.

  1. whoknows

    whoknows Registered User

    Jul 31, 2012
    Hi there

    As we all know, there is a disconnect between the real carers of someone with dementia, who do pretty much everything humanly possible for their loved one, and the Invisibles, who do zero.

    We all know that the carers have great conscience, hold their head up, have done their best etc etc

    But what if that is not enough, we live in a society where every action has a consequence, and that also applies to non-action. You pay your money, you take your choice.

    People who do everything deserve more than the Feel Good, they deserve additional monetary compensation, they deserve to be well mentioned in the community, they deserve special recognition, probably even the Invisibles would agree, but unless its enshrined in Law, its not going to happen.

    So what do we want, what kind of recompense would we want, in a perfect world, on top of our conscience (which we know we have got), what can I write to the MP and say, this is what the people who do all the work, would like ? The numbers needing to be cared for is going up and up, so we need to have a way to get the Invisibles more engaged, else its just not a sustainable scenario.

    I'd like to hear people's thoughts.
  2. LadyA

    LadyA Registered User

    Oct 19, 2009
    Here in Ireland, if you care for someone full time, there are a range of benefits you can apply for (all of which are means tested). There's Carer's Allowance of I think 204 euro per week (bear in mind, the cost of living is very much higher here than in the UK). If there is another Welfare payment going in - for example, in our case, my late husband had a State Pension - the Carer may still be entitled to half-rate Carer's Allowance of 102 euro. In addition, anyone on Carer's Allowance gets a Travel Pass - because you may have to accompany the person you are caring for travelling on public transport. Also, even if you don't qualify for the Carer's Allowance, there is a Respite Grant of 1,325 euro per year. This is paid to the Carer and can be used at their discretion. It can be used, for example, to buy extra respite (you are entitled to four weeks respite per year, free. Whether this is available in your area is another matter!) - or you could use the money to pay for a holiday for yourself while your caree is in respite. Or you could spend it on sweeties! Or (as most end up doing) it can be spent on the extra expenses involved in caring for someone - extra heating, taxis, equipment that will make life easier but isn't provided, that kind of thing. But the point is - the money is there, and was certainly extremely welcome.
  3. Adcat

    Adcat Registered User

    Jun 15, 2014
    Hello, I just read this while keeping an ear out for dad (88 mixed dementia but fit as a mountain goat). He's not inclined to settle and I've got long day at work tomorrow so trying not to stress. I got 2 invisibles. I try not to think about them. I been to see my MP. Waste of time. Just got a patronising pat on the back. I work full time, dads currently self funding for companionship while I work. Financial nightmare. Money will run out. Who cares in government? Social care crises - nightmare.

    Sent from my iPhone using Talking Point
  4. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    Oh don't get me started. We have a list of invisibles a mile long.
    I'm laying in bed listening to FIL starting to fidget (baby monitor) so it's just a matter of time before I have to get back up. I've had to give up work as I'm either looking after the in laws or when they're at the day centre I just seem to be catching up on as much sleep as possible.
    I remember when I had a life.
    I've arranged to go and find out about SDS tomorrow and I'm meeting a friend for lunch on Friday. I'm already worrying that I'll only be left with one day centre day to catch some sleep.
    I'm fed up with either being ignored or told we're 'not entitled' to things.
    Our LA have done away with night care, but they don't put it that way. They say 'nobody is entitled to it any more'. I'm sure they're sleeping well.

    Sent from my iPhone using fat thumbs and an inability to remember to proof read.
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I agree, absolutely, 100%. We have become society's invisibles and we deserve more, definitely, absolutely.
    But is it going to happen?
    Anyone taking any bets?
  6. whoknows

    whoknows Registered User

    Jul 31, 2012
    Good to hear from you all who was the MP mentioned, mine is Theresa Villiers.

    I'll draft up something and share it, i am not overly optimistic something will come from it, but probably in some years time, the momentum we create now will start to shift public attention, when there's not enough Visibles, plus the Invisibles are going to be a little bit uncomfortable, immediately. Which is some comfort, in itself.
  7. little shettie

    little shettie Registered User

    Nov 10, 2009
    Funny you should write this post as I was having this conversation with a friend the other day. Mum now lives with hubby and me. I did run my own business as a driving instructor. I had to give up in June this year as mums needs increased and due to lack of sleep at times, not ideal being in a car!! So I claim the huge amount of £62 a week carers allowance which goes absolutely nowhere! Mum gets her care paid for and every month we get £800 paid into our bank account which can only be used for care and a sitting service. We get 1 hour a day care 7 days a week and 6 hours a week sitting service. This is great, however, I care for mum the other 23 hours a day, 7 days a week and I really need that money that I currently pay to a care agency :( What a mixed up world this is. We really are the unsung heroes. And yes I too have the invisibles, 3 brothers. Classic sentence from mum last week, 'Are any of my sons still alive'!! Says it all. xx
  8. whoknows

    whoknows Registered User

    Jul 31, 2012
    Hi Little Shettie, which part of the country are you, i'm in a London Borough and (probably that is why), we get a lot more allowance and hence things are a bit easier.

    However, the day to day care allowance, is a side issue. My post is really trying to find out what we really want adjusted as regards the Estate. i.e. if you are fully caring for someone, their Will is automatically adjusted by some High Authority, perhaps Court of Protection, perhaps a New Body, so that the Estate is left just to the carer. Or, perhaps the carer gets an additional 10% of the Estate of the person they cared for, that they would not otherwise get.

    I am after wholesale transformation of the Estate handling process in favour of the carers who do so much more.
  9. loveahug

    loveahug Registered User

    Nov 28, 2012
    Moved to Leicester
    Hi shettie, could your mum not employ you to be her carer, she would have to be registered as an employer and pay NI and deduct tax etc but I do think it's worth checking this? There may be others on here who know more about these things than I though so take advice before you do it!
  10. Slugsta

    Slugsta Registered User

    Hi wk,

    I totally understand what you are saying. However, I would not want a system where Invisibles start fighting over who 'cares' the most just to get their hands on extra dosh, I fear that would leave the PWD in a very risky situation :(
  11. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    #11 sleepless, Nov 24, 2015
    Last edited: Nov 24, 2015
    I agree. I don't think mixing 'Estates' or 'Inheritance' with caring is a good thing for the person with dementia. And I can't imagine any new rules being implemented or workable to be honest.
    But I too understand what you are saying. However, there are possibly many reasons why an 'equal shares' approach to inheritance is unfair, (eg. Two siblings could get equal shares even though one was living on the breadline while the other was very wealthy.) But at the end of the day it is up to us as individuals to write a will and keep it updated so that in the event of our death our estate is divided up how we would wish.
    I realise though that by the time a parent is in need of a great deal of care, and that care is provided by just one of their family, it could well be too late to amend a will.
    Just another Dementia Dilemma.
  12. whoknows

    whoknows Registered User

    Jul 31, 2012
    Definitely a situation where the person being cared for does not undergo unnecessary fighting or squabbling, that is not the intention.

    But something fairer than what exists at the moment, which is wholly biased against the person who does do everything. Actually, this will help the person in need of care, as they can be sure that more would be done for them, because there's more in it for the carer. That's the broad intention, fairer, more equitable.
  13. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    "Actually, this will help the person in need of care, as they can be sure that more would be done for them, because there's more in it for the carer."

    There are thousands of devoted carers out there whose loved one with dementia has nothing at all to bequeath them. I do feel that the State lets down all carers, in very many ways, but I am not comfortable at all with care being given with one eye fixed on the dwindling assets of a person with dementia.
    And if your idea could somehow be introduced, the cost of policing the eligibility, and arbitration to deal with the inevitable squabbles that would arise when multiple carers are involved would probably wipe out any monetary gains.

    Do the caring.
    Don't do the caring.
    Every one of us has that choice.
    Because if we walk away, something would have to replace us, be it privately funded, or Local Authority funded.
    I know why I don't walk, and it's nothing to do with Wills or Estates.
  14. whoknows

    whoknows Registered User

    Jul 31, 2012
    Hi, I hear you and where you're coming from.

    This is more something to help out the unnoticed carer generally, its not for everyone, probably a lot of people will say, hey, I pass on this. But let them have something for their efforts.

    My Father is in End of Life, I've organised his care & put my life on hold for 4 years, my sister has done nothing and has visited today and the carer said she was here for 1 hour, didn't try to feed him and vanished. Yet we both stand to benefit the same. How exactly do I get more family support, when she can stick 2 fingers up and nothing in the Law helps me ?

    As I say, this is not for everyone and you can opt out, but for a lot of people, it would help them greatly.
  15. Pete R

    Pete R Registered User

    Jul 26, 2014
    The system is not biased against anyone. If someone has made a will splitting everything equally then that is the way they wanted things to be.

    Knowing I might "get more" from any inheritance would not impact one iota the care I give my Mom. This all seems a bit weird to me but each to their own.:confused:
  16. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    You have chosen to put your life on hold.
    I love my dad & I've made my choice. I'm caring for him irrelevant of who gets what etc.
    When dad eventually goes I will know I've done my very best for him & that will be enough for me.

    I agree that carers should be funded.
    I agree that us carers are overlooked.
  17. canary

    canary Registered User

    Feb 25, 2014
    South coast

    I am so sorry to hear about your dad. The situation with your sister must rankle and the present situation must really bring the unfairness of your life home to you.
    My brother has not visited his mum in the past 6 years apart from one occasion when I nagged him into doing it because I was afraid that if he left it any longer mum would not recognise him. I do not expect to see him again until the funeral.
    I do not see that gaining any greater portion of mums fast dwindling savings will make any difference to the situation TBH. I suspect that what I will really need is affirmation that life with dementia is unfair and that we, the carers, lose out in so many ways. I still would not change my decisions, though.
  18. Bizzylizzy73

    Bizzylizzy73 Registered User

    Sep 16, 2015
    Southport, Merseyside
    Invisibles! Gosh, so many!
    I too was self employed running a successful vegan n vegetarian Baker. But I've given up my job to care for my divorced parents. Mum has Alzheimer's dad has had a stroke and early renal failure, teetering on the edge of diabetes.
    I get carers allowance, mum has a carer who comes in at lunch, whilst I go check on dad n make him a meal.
    Getting help from my local council is very difficult! I appreciate they are busy with many people like myself, but sometimes 6wk wait is too long!!
    I wonder what would happen if all us visibles stopped doing our 24/7 caring roles. The sudden pressure for social services would require change NOW!!
  19. little shettie

    little shettie Registered User

    Nov 10, 2009
    Whoknows; I understand where you're coming from but its a difficult and complex argument and one that I can't see ever coming to fruition. I have cared for my parents for 8 years, first Dad when he became ill and then mum when she was diagnosed with AZ. Not only their lives changed overnight but mine too. My parents both wrote wills, in fact I helped them organise it and they decided themselves who got what and rightly so. If we had a crystal ball then maybe it would make things easier for the future! Both their wills leave everything split between us 4 children with an equal sum to all the grandchildren. Now a couple of my brothers have had complicated lives and have 5 children each from different relationships and not one of these grandchildren ever visit their grandparents or even have any contact with them and yet they will benefit from the estate. That rankles with me, of course it does. And the fact that my 3 brothers do a big fat zero regarding mums care and they will get an equal share same as me. When we decided to have mum live with us, one of my brothers stated we should get more money from the inheritance and he is quite fair. However my middle brother who really has been the most needy of us all, with mum and dad bailing him out financially many times over the years, was suspicious of why we were doing what we were having mum live with us!! Seriously he thought we were after her money!!! I won't repeat what I called him :mad: As for mum employing me as a carer, not an option as sadly she no longer has capacity to decide these things. :(
  20. whoknows

    whoknows Registered User

    Jul 31, 2012
    ok, a good selection of views and thoughts, that's much appreciated and the point of my post.

    Perhaps some people do it for love (I do), some feel (strongly) that they are not rewarded enough for their efforts (I do), some feel they are taken for granted (I do), there's many more factors here too, what I can sense is if the benevolence of the carers is not well rewarded urgently, I am fearful that the carers goodwill bankrupted and we will all be worse off.

    Today my Sister pitches up for an irregular fortnightly 1 hour visit and it just breaks my heart that she is Invisible, it is my opinion, the only way to remedy this situation, in some circumstances, is in the pocket and it should be enshrined in the Law. Unfortunately, we don't live in a perfect world, so something must change.

    I am directed to the Inheritance Act 1975, which allows a Court to vary the Will of someone, if they feel it does not provide "reasonable financial provision for the applicant", so there is a foundation for what I am proposing. What's missing is that it is not strong enough, you can't have it case by case, you need to have something that people can rely on beforehand.

    From the responses I have seen here, I'm not the only one in this boat and we just have to create a movement to get us well recognised. Wouldn't it be nice if that would be enough to get the Invisibles involved ?

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