Trying to get a point home to local politicians

[maryjoan]

I have a meeting later today, with a local politician as a follow up to a presentation I did at County Hall a few weeks ago.

There is one thing I really want to hammer into the heads of all these professionals - and here it is. Is there anything that you think I should add or take away???


The most basic aspect of being a Carer, is often overlooked by those in Social Services, Local Government, and Medical professions.
All the professional people that a Carer might interact with, are exactly that - professional. They are working in their chosen career, a career they will have spent many years training for, or working in. This career will afford them an appropriate status, salary, holiday leave etc etc. The professionals do their jobs because it is what they actually want to do with their lives. If they do not, then they are in the wrong career.
Carers are not in a job, or career. They are in a 24/7 all encompassing life style, not of their choosing. There is not one Carer in this country that actually WANTS to be doing what they are doing.
They have been thrust, often suddenly, into a strange world that they do not understand. A world which is so diverse as to be totally bewildering. It is a very painful world, because of the situation that requires the person to become a Carer.
By the nature of what they are having to do for a loved one, and the fact that the loved one needs someone to care for them - Carers are actually often sad and unhappy people - often to the point of depression.

 

[nae sporran]

Good luck with your meeting, Maryjoan. I was personally never thrust into caring, it was more of a gradual process where a stroke added to my responsibilities, then a seizure added more until I find it hard to say when I became a carer and when it just got harder. You are right, we don't choose it, we would rather be a partner sharing the ups ad downs of life.

 

[2jays]

Very good piece

My thoughts - what I feel you need to have an opinion on is how this situation can change. Sorry I’m not well at the moment, otherwise I would hope I could help with some wording.

He’s my thoughts and small tweaks on what you have said. Almost bullet points needed.

The most basic aspect of being a Carer, is often overlooked by those in Social Services, Local Government, and Medical professions.

All the professional people that a Carer might interact with, are exactly that - professional. They are working in their chosen career.

This career will afford them an appropriate support, status, salary, holiday leave etc etc. The professionals do their jobs because it is what they actually want to do with their lives.

Carers are not in a job, or career. They are in a 24/7 all encompassing life style, not of their choosing.

They do not have the same support that a professional carer has. They are almost always overlooked and the person they care for takes priority to the detriment of the carer, when infact if the carer has more support, less brickwall
The most basic aspect of being a Carer, is often overlooked by those in Social Services, Local Government, and Medical professions.

All the professional people that a Carer might interact with, are exactly that - professional. They are working in their chosen career.

This career will afford them an appropriate support, status, salary, holiday leave etc etc. The professionals do their jobs because it is what they actually want to do with their lives.

Carers are not in a chosen job, or career. They are in a 24/7 all encompassing life style

They do not have the same support that a professional carer has. They are almost always overlooked and the person they care for takes priority to the detriment of the carer

There is not one Carer in this country that actually WANTS to be doing what they are doing.

They have been thrust, often suddenly, into a strange world that they do not understand. A world which is so diverse as to be totally bewildering. It is a very painful world, because of the situation that requires the person to become a Carer.

By the nature of what they are having to do for a loved one, and the fact that the loved one needs someone to care for them - Carers are actually often sad and unhappy people - often to the point of depression and burn out due to having to fight the brick walls placed in their way.

 

[2jays]

Very good piece

My thoughts - what I feel you need to have an opinion on is how this situation can change. Sorry I’m not well at the moment, otherwise I would hope I could help with some wording.

He’s my thoughts and small tweaks on what you have said. Almost bullet points needed.

The most basic aspect of being a Carer, is often overlooked by those in Social Services, Local Government, and Medical professions.

All the professional people that a Carer might interact with, are exactly that - professional. They are working in their chosen career.

This career will afford them an appropriate support, status, salary, holiday leave etc etc. The professionals do their jobs because it is what they actually want to do with their lives.

Carers are not in a job, or career. They are in a 24/7 all encompassing life style, not of their choosing.

They do not have the same support that a professional carer has. They are almost always overlooked and the person they care for takes priority to the detriment of the carer, when infact if the carer has more support, less brickwall
The most basic aspect of being a Carer, is often overlooked by those in Social Services, Local Government, and Medical professions.

All the professional people that a Carer might interact with, are exactly that - professional. They are working in their chosen career.

This career will afford them an appropriate support, status, salary, holiday leave etc etc. The professionals do their jobs because it is what they actually want to do with their lives.

Carers are not in a chosen job, or career. They are in a 24/7 all encompassing life style

They do not have the same support that a professional carer has. They are almost always overlooked and the person they care for takes priority to the detriment of the carer

There is not one Carer in this country that actually WANTS to be doing what they are doing.

They have been thrust, often suddenly, into a strange world that they do not understand. A world which is so diverse as to be totally bewildering. It is a very painful world, because of the situation that requires the person to become a Carer.

By the nature of what they are having to do for a loved one, and the fact that the loved one needs someone to care for them - Carers are actually often sad and unhappy people - often to the point of depression and burn out due to having to fight the brick walls placed in their way.

 

[2jays]

Sorry. Did I mention I’m not well

I can’t seem to cut and paste properly or edit. But hopefully you can “see” what I’m trying to say

 

[Grannie G]

You can only speak for yourself @maryjoan.

I considered my caring role as an extension of the love and loyalty of being a wife in a loving relationship which had spanned over 40 years at the time of diagnosis.

It was not something I would have chosen at any time. It was also not something my husband would have chosen. There was nothing in his lifestyle which could have led to his dementia so it wasn`t his fault.

What I object to is how much carers are taken for granted and how easy it is for successive governments to pay lip service to the needs of carers. We get lots of sympathies but very little practical support.

It`s so easy to ignore carers and take advantage of the love they have for the people they care for and the fact they will be trusted not to walk away.

This is what I would say to anyone prepared to listen.

 

[marionq]

The gradualness is correct and this is why after diagnosis carers can look back and see that they were making those adjustments many years previously. I took retirement from my job as a Principal Teacher years early because I could see my husband was struggling at work. He was 63. I thought his problem was his hearing or just getting older. I’m 11 years younger.

We still travelled. He still drove. Over the next decade the changes were in behaviour and decision making. I had a lot of unhappy times which have left a scar though not his fault. This morning I have been reading again the Fisher Scale and stage 3 describes a long period before I faced up to a serious change which was stage 4. That was almost 7 years ago and all downhill as he is now a definite 6e. I have lost a huge chunk of productive life both socially and financially. I can never make that up.

 

[Louise7]

I agree with the above responses - include details of what changes the audience could make to your position otherwise it may come across as a bit of a 'rant' and you will have missed an opportunity to get something constructive out of the conversation.

As Grannie G has said, speak for yourself. I hate it when anyone (politicians included!) profess to be speaking on behalf of 'everyone' within a particular group, demographic etc. Something is being stated as 'fact' when the views of 'everyone' aren't actually known.

On that basis I personally don't like the line - There is not one Carer in this country that actually WANTS to be doing what they are doing.

Maybe change this to reflect your own position rather than make an assumption on behalf of every carer and their situation?

 

[Beate]

Carers do not get the appropriate respect because they are not professionals. Paid carers get more respect just because they are in a recognised job. When I told a hospital employee that I am an unpaid carer she ticked the "unemployed" box. Way to make me feel valued! Even after years of talking to the council, sitting in meetings and developing strategies and leaflets for carers, they still sent us a meeting request for a 3.30pm meeting. It fits in their working day, so why wouldn't it fit in ours? There is just so much ignorance still, and it's disheartening.

All I ever wanted was some proper respect and recognition for what I did day in, day out, not the insultingly small Carers Allowance, not a pat on the back on how well I'm doing, not excuses about financial constraints or hospital staff trying to make me feel guilty or small for my mere existence and the fact I didn't just roll over and let them get on with it, after having attended a one day dementia course and therefore being "experts".

 

[nae sporran]

Just a wee thought that occurred to me, though I suppose Sylvia already said it. At a carers meeting I used to go to one lady who looks after her son who has learning difficulties said she never thought of herself as a carer, she was just his mum. Those groups are a great place to meet others I the same boat, as TP is, and more funding and support for them should be a priority for politicians who appreciate carers.

 

[maryjoan]

I agree with the above responses - include details of what changes the audience could make to your position otherwise it may come across as a bit of a 'rant' and you will have missed an opportunity to get something constructive out of the conversation.

As Grannie G has said, speak for yourself. I hate it when anyone (politicians included!) profess to be speaking on behalf of 'everyone' within a particular group, demographic etc. Something is being stated as 'fact' when the views of 'everyone' aren't actually known.

On that basis I personally don't like the line - There is not one Carer in this country that actually WANTS to be doing what they are doing.

Maybe change this to reflect your own position rather than make an assumption on behalf of every carer and their situation?

I am totally positive that There is not one Carer in this country that actually WANTS to be doing what they are doing.

I say this for many reasons, but the most overwhelming one has to be that we would far far rather the person we are caring for was as they were,healthy, happy, and enjoying life with us - and that we did not have to take on this caring role. That goes for those who have gradually adapted to the role of carer as well as spouse, and those who have been suddenly thrust into it as I was.

 

[Beate]

We didn't choose it, no.
But you can get fulfilment from it, knowing you are making someone's life better, and I chose to give up my job. I wasn't a total victim, and I derived satisfaction from fighting for him.

So yes, it wasn't my chosen job, but I wanted to look after him once we had a diagnosis because I loved him. There is a difference, so I can't identify with a sweeping statement like that. I just wanted the appropriate respect that came with my caring role.

 

[Shedrech]

maybe direct them all to TP where they can read for themselves the experiences of so many people

 

[karaokePete]

Like others, I wasn't thrust into being a carer as the changes in my wife occurred gradually. The only sudden aspect was the diagnosis and, with me, that actually saved my marriage as I was thinking I was married to someone that had changed so much I didn't want to be with them any more.

I also agree with what has been stated about going with a rant as that is unlikely to get a positive response. The diagnosis was important to me and it is important to many members so stressing that and asking for more resources at that level is something positive.

Also, in a recent report from my wife's Consultant there was a bottom line "Significant carer stress was observed today.", yet neither the Consultant nor the GP mentioned anything to me. Asking for something like an annual check-up once someone registers at a surgery as a carer may be something positive as most carers only see a Doctor on behalf of the person for whom they care.

Some improvements in the benefits system may also help people know what their entitlements are and make it easier to obtain the benefits.

Overall, if you can manage it, presenting solutions will go down better than presenting problems.

Finally, I think that it's great that you are doing this and I hope it goes well for you. Best of luck to you.

 

[istherelight?]

Hi @maryjoan.

I didn't live with my PWD but my caring role affected my life deeply. And, when I did need help there was no joined up service. The doctor said "what do you expect me to do?", the hospital just wanted to discharge my PWD asap, and phoned constantly even though their own social workers were responsible for organising a care package pre-discharge. In the end I had to find a suitable CH alone, and even then, if my PWD had said she didn't want to go into a home, she would have been discharged back to her home - a wanderer who couldn't feed, wash or in any way care for herself. Her "rights" would have been put ahead of her needs.

What we need a proper, professional, support system for carers.

Good luck with your meeting.

 

[Louise7]

I am totally positive that There is not one Carer in this country that actually WANTS to be doing what they are doing.

I say this for many reasons, but the most overwhelming one has to be that we would far far rather the person we are caring for was as they were,healthy, happy, and enjoying life with us - and that we did not have to take on this caring role. That goes for those who have gradually adapted to the role of carer as well as spouse, and those who have been suddenly thrust into it as I was.

Maybe amend your speech to include the above then, as it will come across better to the audience and have more of an impact than the original sentence.

 

[Helly68]

I am totally positive that There is not one Carer in this country that actually WANTS to be doing what they are doing.

I say this for many reasons, but the most overwhelming one has to be that we would far far rather the person we are caring for was as they were,healthy, happy, and enjoying life with us - and that we did not have to take on this caring role. That goes for those who have gradually adapted to the role of carer as well as spouse, and those who have been suddenly thrust into it as I was.

MaryJoan - another thing that may motivate MPs is the demographic aspect of all this. Increasingly we have an ageing population, whose children and grand children will all be dealing with carer related issues far into the future. These are all voters - sorry to be so blunt, so MPs need to be looking at these issues now - for carers and PWD now as it is becoming such an issue for communities, You only need to look at how badly the care home fees cap plans played out for the conservatives to see these things do have a political dimension, even though we have an experience that many wont understand. I think this may sound cynical but I am afraid what I have seen of local politics makes me cynical.

 

[karaokePete]

@maryjoan, please don't think that people are 'jumping on you'. I'm not.

I think the point is that someone is more likely to work with you if you present them with a solution they can pick up and use, rather that presenting a problem that they have to solve for themselves. I also think that if we are positive the other person is more likely to reciprocate and work positively with you.

What you are doing is great.

 

[kindred]

Oh well done sweetheart. If I had a positive plan to put forward it would be to acknowledge that there may be a progression from being in care at home, to being in care in a residential home and that a social worker appointed for the carer, not the PWD should be monitoring this.
all good luck and thankyou. Kindred.

 

[Philbo]

Hi maryjoan

May be worth pointing out that for most of us carers, the bulk of any support we do manage to get, is from voluntary/charitable organisations, which we have to find for ourselves?

Well done.
Phil