Who will care for the carer?

Question, Who or what is a carer? In the majority of cases i would hazzard a guess and say they are the spouse or parent of the patient. I would also hazzard another guess and say that most of them aren’t aware or the benefits they could claim!!! And that is the word, claim. If you are not aware that a benefit exhists then how do you claim it? It’s about time when a patient is diagnosd with a condition like Parkinsons, a carer should be appointed and paid an apropriat allowance.
Best wishes Hecky Dave

1 Like

Hello Hecky_Dave
Do you realise what a contentious issue you have probably started with your apparently simple statement? Whilst I have no problem with carers being better informed about what benefits they can claim - indeed I would go further and say that there is a need to make people across the board more easily aware of benefits that may be claimed - and that they should be paid an appropriate allowance, I most certainly would not want a carer to be appointed ‘on diagnosis.’ In fact I am 13 years post diagnosis and still do not have a carer. I manage my own life and take responsibility for managing my own affairs and intend to continue to do so for as long as I can. I live alone quite happily but do get heartily fed up with the assumption that I have a carer and the frequent incredulity that I do not. I cannot think of anything worse than having a carer appointed on diagnosis, which would carry an implicit assumption that I cannot manage when that is a very long way from the truth.

Hi @Hecky_Dave, :wave:t6:

You’ve raised some interesting questions and whilst I appreciate your perspective, Tot has raised a valid point about independence.

Parkinson’s affects everyone differently and symptoms progress differently, therefore, a lot of people with the condition prefer to maintain their indepence for as long as possible and may not require a carer at the point of diagnosis. There is no one size fits all type of system upon being diagnosed with Parkinson’s; however, we have a lot of helpful information about how to care for someone with the condition including financial support that they may be entitled to, should people need this.

I hope this answers your questions.

Best wishes,

Hello Tot,
The first thing i want to do is appologise for the obvious upsetment i have caused you, and anyone else i might have upset. I was diagnosed 14 years ago and am lucky my wife sees to any need that might arise,but she is unpaid, like most people we wouldn’t know where to go for financial support so again we are lucky we don’t need it. I didn’t make my point very well, and certainly didn’t mean for a carer to be employed on the day of diagnosis, but what i meant was the patient to be told what was available.

Hello Reah.
I sent you an e-mail yesterday just to try to clear up what Tot and yourself found contentious in my original post. It was just a statement of my opinion, nothing to get worked up about.
I was just wondering if you had got my e-mail. I sent it to Reah via Parkinson’s UK Forum…
Best wishes Hecky Dave

1 Like

And did you know that the carer’s allowance is subsequently taken away once the carer receives their state pension because they are considered conflicting benefits :triumph::triumph::triumph:

Hello Hecky_Dave Please don’t worry and no need to apologise. As I said, I don’t disagree with your basic sentiments about carers. I don’t need to tell you that living with Parkinson’s is hard work not only in itself but because it is not well understood assumptions are often made and assuming everyone has a carer is one of those. I appreciate the situation you are in and that works for you and your wife and that’s great. My situation however works equally well for me but like many who live alone with Parkinson’s it’s assumed we must have a carer. As it happens I do have help if you want to call it that, I don’t. Out of the 168 hours that make up a week she comes for two. It is something I arranged and pay for myself and we have a very flexible arrangement around what I want, note want not need - there is a difference. Plenty of people employ cleaners, gardeners, take taxis to appointments etc but because I opted to go to an agency for this type of help, I am considered to have a carer when in actual fact it is simply the most cost effective way of getting what I want - a lift to appointments, a means of getting about easily now I no longer drive, someone to take me to a supermarket so I can do my own shopping etc etc worth every penny but entirely on my terms. I could manage without her and do when she is on holiday. That is not having a carer by the way I understand the term but that two hours enhances my quality of life in exactly the same way as Mrs Smith employing a domestic cleaner to clean her house enhances hers. People don’t question her right to employ a cleaner, but often I am not afforded the same right because I have Parkinson’s and live alone. That’s why your ‘carer appointed on diagnosis’ was a bit of a red rag to a bull’ in my response but it would take more than that to upset me so please don’t concern yourself any further.

Hello Plus1 this is link to info on the Carers Allowance which may be of interest given your comment on conflicting benefits, the term they use is overlzpping. i found it most interesting,

Hello Tot
If only the information was a magic potion - I found the whole benefit system unfit for purpose. I don’t believe the state pension should be classed as a benefit when you’ve worked hard to input into it all your life. There lies the problem maybe there should be 2 types 1 a pension not a benefit for those that fully contributed to it and another, a benefit pension for those that haven’t been able to contribute but can still claim something.
Yes overlapping is the term used, I (having worked all my life from age 15 until I gave up to look after my husband with Parkinson’s and my elderly parents, until I was 66). I was paid carer’s allowance for 1 year then it was taken away because you cannot have both. Or at least anyone who receives the full state pension cannot. As for receiving a letter saying you have an underlying claim to it ‘may’ help you with other benefits - I’ve yet to find any.
I fear my husband and I fall foul of having worked hard and bought our own home, now we need help there isn’t any to be had. We need our home altering so my husband can access the bathroom in his wheelchair, can we get a local council disability grant - no. The occupational therapist kindly brought a toilet representative round to explain one of these self cleaning toilets with a price tag of £4,000 plus, to say nothing of the £15,000 plus building works required to the house.
We need a wheelchair accessible vehicle can we claim mobility allowance - no
I get soooooooooo frustrated with people saying, you must be entitled to get a mobility car just apply :triumph:
If you are diagnosed with a condition when you are over 65 you are not entitled to claim Disability Living Allowance or PIP as it’s called now. The scheme of leasing a mobility car is only part of this benefit is not available as part of any other benefit nor available to a non benefit receiver. Oh but if you are already in receipt of this benefit and reach 65 it is not automatically taken away from you indeed it is very rarely taken away from you. So there’s another £20-£25,000 to be found.
I doubt very much that we are the only ones in this situation who sadly thought there might be some financial assistance out there for us.

The link was just to clarify the carers allowance, in particular the language used as conflicting is different to overlapping. I do not however, disagree with much of what you say. One of my main frustrations is that having done everything I could to secure my financial future to retire at 60, the goal posts were moved. Parkinson’s came along and with it an introduction to the wonderful world of benefits where all too often assumptions are made and I am talked at like I am 6 years old and can’t possibly understand,. That aside, financially I seem to fall between several stools. I will probably be worse off when I get my state pension because by my calculation I will be slightly over the personal allowance so will be taxed. This will only be a small amount but likely to mean I am not able to claim or see a reduction in benefits I currently receive leaving me with less disposable income overall. I too, worked hard to buy my own flat and am in much the same position as you and your husband. I have saved and paid for all changes in my flat to date I am currently researching options that will best safeguard my future should I need to move from my flat - my only asset - but whatever I do, virtually every penny I have will go into a single pot to pay for my care. I do sometimes think I would be better off if I’d spent every penny and saved nothing. However the system is what it is and all I can do is work with it as best I can.

Hello plus1, I don’t have much to add to your very pertinent and detailed post, only to heartily agree with you about state pension being a ‘BENEFIT?!’ I was having this very discussion with my friend the other day. Her husband, like mine, also has Parkinson’s and all we are entitled to is attendance allowance. Like yourself and Tot, we have both worked all our lives until retirement and bought our own home and invested money for our future. Neither of us has ever been in receipt of any benefits. I’m at a loss as to how state pension is classed as a benefit if you’ve paid into it all your working lives! So, other people who also receive a state pension but who are fortunate enough not to have to act as a carer for their partners, can enjoy spending their pension on whatever they wish but we have to assume it’s now become a ‘carers allowance’ when a diagnosis of PD (or indeed any condition which ultimately requires the partner to take on the role of full time carer) is made!
Something is very wrong here. Maybe it’s time to approach our MPs? My friend and I are going to make an appointment with ours asap. Watch this space…

You’ve hit the nail on the head Jean1. I may in theory be free to spend my pension in any way I please - leaving aside all the complexities of the benefits system that sees fit to reduce anything you can claim if a little extra income comes your way - in fact DWP are quick off the mark every year to find out what the increase in my occupational pension will be usually before I know myself in which case i have to give them permission to get this information direct from my pension provider - but the reality is if I want some say in my future living and care needs that will give me quality of life, which I do, that will largely be down to me to self fund. The statutory services will I think, be only able to fund the bare minimum for some time to come. Therefore as I said in theory i could spend my pension how I please, the reality is I have to cover day to day costs now and do what I can to preserve and enhance any savings I can (which is not much) to try and ensure quality care as my deterioration progresses. Given the cost of social care I am not even sure that my most valuable asset, my flat, where I could be seen as being rich on paper, would be enough for me to self fund which is a very sobering thought. In fact it has already made me reconsider one option which would mean my savings would be eroded by having to pay for everything and i would not have a means of replacing those savings. Anyone living with a chronic and deteriorating condition such as Parkinson’s should really not have to worry about their future because of finances but the stark reality is there will never be enough money in the pot. Demand will always be greater than supply, and we have increasing expectations of what we are entitled to and what health and social should provide. For me it means being proactive in seeking out options that will give me the future I want and that means accepting at the moment anyway, I will need to self fund and that is costly.

I have read with interest the replies to this observation. The word carer seems to be contentious something which given our situation I find interesting it is after all only a word. My husband has 24/7 carers in the house we have a pool of about 5/6 who work between 24/48 hours per shift. The carers/support assistants have to be knowledgeable and experienced - poor care results in significant deterioration I also have a gardener who cares for the garden and a cleaner who cares for the house and has become a good friend and support as has the gardener. The support workers/carers take my husband out in his car shopping and for various excursions if he is well enough. The good carers provide stimulating conversation which is essential to his cognition.
We do have a mobility car - unfortunately he was diagnosed at 56 and due to medical negligence lost his mobility sooner rather than later. We have had to fund all adaptations to the house to make it wheel chair accessible throughout.

The carers we do have are excellent and although highly valued by us, significantly underpaid. We truly appreciate all the care we get to enable my husband to continue living in his own home.

In the past I did get carers allowance - a pitiful amount which was taken away when I took up my state pension.
I am my husbands main carer and much of my time is taken up with overseeing the carers, liaising with the care agency, ensuring quality of care ( unfortunately too many carers do not understand the complex needs of pwp). Liaising with consultants and their secretaries, liaising with Milbrook Healthcare re maintenance of equipment dealing with orthotics GP surgery etc etc.
Yes my husbands care is fully funded and I am truly grateful however i would much rather he didn’t need it. I have lost my husband to this horrible illness but I am still grateful for all I have. When the time comes the care you need is there but you will have to fight to get it and the need for good advocacy is essential . This is something that should be offered at diagnosis. Yes I know there are Parkinsons Nurses and Local Advisors but these roles need developing further especially for pwp in hospital.

Unfortunately we are to in a time of crisis with regards to funding of care and severe cases like ours will get the funding, however too many fall short of the criteria needed to trigger this level of support. This is how it is at the moment but we have to fight for better care in the community and also for more community involvement.

Finally I will jump on my hobby horse and say all newly diagnosed and their partners, if they have one, need emotional support. Additionally in the same way as exercise is prioritised so should the tools to deal with stress,depression and anxiety be offered including carers/partners.

1 Like

Hello there,

I am a carer for my husband and am finding it tough going. My GP referred me to someone called a Social Prescriber. She is amazing and has made me aware of lots of different support avenues. I have not met her but we speak on the phone monthly. She is, I understand, there to support me as a carer and so far I have found it amazing. So it might be worth asking your GP if there is a similar system in your area.

1 Like