She is not my carer

[Tot]

Carer is not what she is

Carer is a term I am forced to use because it is the current terminology and I have no choice if I wish to be understood, just as we are now service users when I personally think there was nothing wrong with client, a much nicer term in my view.

I live alone I arranged and pay for someone to come in for two hours once a week. I do not consider her to be my carer she simply gives me a hand. If a label must be applied support worker would be better, She does not have set tasks it’s just a matter of what is needed each week. It gives me the practical and flexible help I need that commissioned services can’t.

It doesn’t matter what I say or how I say it she is always recorded as my carer. I am always asked what she does and whatever I say it is always recorded as housework. There is no place for the flexible arrangement I have to be properly recorded.

This may seem like a small thing but unless and until it is recognised that one size doesn’t fit all in terms of terminology used there will never be a true and accurate account of someone’s circumstances. Carer suggests someone who does for a person which is correct in many cases. The person who comes to me does not do for me but supports me to do things myself or completes tasks I ask her to do. She takes my lead. It may be a subtle difference but it is a difference. I believe it to be important because the fluctuating nature of Parkinson’s needs flexible services, inaccurate terminology does not lend itself to flexibility. In my opinion and experience it leads to incorrect assumptions being made.

I will continue to say it like it is and it will continue to be poorly recorded. I have taken to writing a reply when receiving formal records to make it clear what help I actually get ie what I ask her to do not what she does for me. It won’t get me anywhere but at least it will be on file. It’s all I can do. There is a very long way to go before record’s are truly accurate.
Tot

[yogalady]

My husbands carers are also support workers. Support workers are enablers to help you live your life to the optimum. Carers generally deal with personal care. In our case the lines are blurred The specialist agency we use call their employees support workers but they also do personal care. I am categorised as my husbands main carer as I oversee all his needs. Personal assistant is also a title that is often used by social services.
Maybe this would feel more appropriate.

[Jackson]

Hi Yogalady,

This thread seems to be following a similar theme to another thread in relation to ‘carers’ and as I was going to respond to your reply to me on that thread, I figured I might as well butt in and post this here instead.

It goes without saying that these are just personal opinions (along with a few blatantly obvious statements) and they are a loosely connected collection of rambling thoughts that may or may not be relevant at that!

I have Parkinson’s. My symptoms are obviously typical of this condition but the range of symptoms that I experience and the rate of progression are, as far as I can tell, individual to me. I want to be seen, treated and listened to as an individual. Most importantly I want to be listened to and that is the one that I find the hardest to achieve.

I will almost definitely need support at some stage and I may well suffer with dementia in the future but I am not there yet and although my chance of developing dementia may be higher than I would like, a great deal of people without Parkinson’s will also go on to develop it. I’m not sure where I’m going with this one but it seems pertinent.

I want to be seen as I am today in the same way that I see my friends who may go on to develop all sorts of illnesses as they are today. I don’t want to be seen through Parkinson’s coloured glasses or pitied because of things that may happen in the future. The past is gone and I don’t have the future yet, what I have is now. Having lived with Parkinson’s for many years, I now choose not to waste time mourning a future that I never had. Others may call it denial but it works for me.

I live alone through choice, it suits me. I don’t want anybody to attend appointments with me at the moment, I want to exercise my right to medical privacy for as long as I possibly can however inconvenient this is to service providers. I do, however, get cross when I am constantly asked about carers and assumptions are made by health professionals about the pitifulness of my single status -that is not how I feel.

If I am forced to access healthcare through digital means, I will have to enlist help because tech does not yet accommodate shaky hands and therefore I will resist digital healthcare until I am empowered to use it independently.

Empowerment in it’s true sense should surely be about enabling me to exercise my right to make decisions for myself and not just about encouraging DIY Healthcare to save the Health Service money. If empowerment is going to be the target then it should be in its fullest sense and that starts with listening to all people and all opinions and all experiences. This definitely does not happen at the moment.

My friend who has a challenging job pays for cleaning services, her cleaner is not labelled as a carer. Why should this be different just because the person paying has Parkinson’s?

The move towards assuming that relatives will automatically take on the care of elderly relatives and those of us with chronic health conditions is, in my opinion, a dangerous one. A little bit of research tells me that the idealised view of extended families caring for and respecting elderly and sick relatives is mostly just an idealised view - though of course it will work for some. Our Society needs to think carefully about how we are going to provide care for those needing it but I am pretty sure that dumping it on the family is not going to work. We no longer tend to live with our extended families and this is something we cannot go back to.

I do believe that my family have a choice as to whether or not to meet my care needs should this becomes necessary at a time when they are still well enough to provide care and I have expressly asked them not to take on this role. I understand that I am asking them to make a difficult choice but it is a choice that I’m asking them to make nonetheless and it is a choice that they have. I may well end up on the street but so be it.

The question surely is whether or not I am worth P
professional care - I increasingly think the answer is not but on the grounds that I cannot even find out what provision is available from my local health services for people living with Parkinson’s I don’t think this is a question that I’m going to find the answer to either.

We are all different. We have different experiences and different influences and different views. I think this is very healthy and I enjoy reading other people’s thoughts because it helps me to shape my own. I may or may not agree and others may or may not agree with me but that’s ok.

Thank you for sharing your experiences, thoughts and views. It has given me something to think about in the early hours when I am inevitably awake . Jx

[Tot]

Thank you for your reply yogalady. I think perhaps I wasn’t that clear in my original post but I was a bit fed up with yet again having my record show I had a carer despite anything I said. There are 168 hours in a week. My help which I arranged and pay for myself with no input from anyone in statutory services comes for 2. Hardly a large part of my week. I don’t deny she is a help but it is strictly on my terms. Often because I no longer drive it is to take me to appointments. She helps with the garden and generally helps keep my home running smoothly because I don’t always want to use my energy to do the ironing for eg because I’d rather spend my energy doing something I enjoy, ironing not being one of those things. In short it a cost effective and flexible way of getting done what I need. I could use public transport or taxis, I could hire a gardener, use an ironing service or employ a cleaner, if I did they would be listed as individual services and cost me more. I however opted for the convenience and cost effectiveness of an agency who can provide all I need but because its an agency I’m deemed to have a carer because that is the current terminology in my area. Support worker is most often reserved for those with learning disabilities and personal assistant usually means live in carer. I know from my own work experience you more or less have to use the accepted terminology ‐ in fact this is becoming more fixed with increasing use of computerised assessments which are little more than glorified tick boxes into which everyone must fit.

When you develop a chronic condition you acquire a whole raft of labels which I am apparently just supposed to accept. Why? I do not describe myself as disabled I am simply Tot and I happen to have Parkinson’s - pre diagnosis I didn’t describe myself as able bodied Tot, what’s the difference? Up to a point I accept labels are needed but it is the assumptions that come with them that are the real problem.

I am not in denial, fearful of my future, grieving for lost life or anything else when I write. My point is actually quite simple. Parkinson’s is a variable and fluctuating condition. To meet need, services need to do the same. This has to be based on accurate recording to minimise the risk of inaccurate assumptions being made. In my case they only need write what I say '… …says she does not have a carer but has arranged 2 hours independent help a week to facilitate the smooth running of her home and commitments as she directs. That is what I do. That is what Ì say. Why is this recorded on my latest assessment “has a carer 1/7 to assist with needs in the home” which gives a very different picture to my description. A few years ago there was a huge push to adopting a client centred approach, putting the client at the centre of assessments and interventions. All very laudable but the reality is questionable.

At a time when expectations are rising and resources finite there are always going to be winners and losers. It makes fair distribution of the resources that are there, ever more important. Records are the foundation stone on which decisions for access to services are made and need to properly reflect an individual’s circumstances. It’s way past time that I stop being recorded as having a carer with its implicit assumption that I need personal care which I don’t have, never have had and won’t have unless and until my Parkinson’s so indicates.

[SheilaW]

I agree with everything you say - you could have written it for me and my frustration at the tick box culture -‘if it is not in the box it cannot exist’. Keep up the fight.