When The Caring Ceases : Some Thoughts As To What To Expect

For anyone who is bereaved or no longer providing care.
Section copied over from another thread ... now expanded a little , especially on the housing element ...
several postings have touched apon issues contained herein.

It is NOT intended to be guide ... every carer will experience different problems , some more severe than others.

What happens when the caring , for whatever reason , stops ?

Feel free to add any observations ... especially specific ones as I have generalised most experiences.

Just imagine what person emerges when the caring ends ....

What goes into caring ... you ... is not the same that comes out.

Perhaps late 50s , educated but totally out of touch with the new world before you ?

Fortunate if you are still have assets intact ... debt is all too common given the income paid to a carer over the years.

What now ?

You're free ... perhaps another 30 years ahead ... where do you start ?

Immediate concern ... housing ... your income alone ... enough to keep the roof over your head ?

If a social tenant , under immediate pressure to vacate and downsize ?

Join the queue in many areas wherein there are 10 / 20 / 50 ... even more ... tenants wanting to downsize for every smaller property available ... the Bedroom Tax being the catalyst for this.

In either event , Council Tax ... potential Bedroom Tax ... needs sorting as there has been a change ... and that can be a can of worms for many !

How about seeking a BTL property ?

Think again ... many agents refuse point blank to let a property to a tenant on benefits ... speading in line with the UC rollout as I type.

Moving to a new area ?

I did it ... but in exceptional circumstances ... may be the choice if a clean break seems the choice. Again , much will depend on the finances available ... only in exceptional circumstances mortgage your very soul to do so ... unless , like me , that was the only option !

Even seven years and a few days later , I still feel liike a transient ... a stranger in a very strange land ... it will eventually pass ... so I keep telling meself ... home is where the heart is ... ?

Some don't like my analogy but ... I consider it appropriate for many ex carers , especially the lone carers ... those prison gates have shut and there is no one to guide you into this new world.

Initially , you may feel like a leper ... nobody wants to know you ... common ... each of us need to deal with that one in our way ... there is definately no one size fits all solution.

An educated person before caring ... perhaps a banker / accountant / architect etc.

20 or so years later , you think of finding a job in those areas. Think again ... those sectors have changed ... even the way of doing the simple things.

Retraining ? Forget it. In those sectors , private tuition is unheard of , need to be on the inside first.

During caring days ? 21 Hour Rule ... Carers Allowance lost. Those skills are dead.

Perhaps think of becoming a care worker ... using your own skills as a family carer ?

Most would NOT last five minutes ! A care worker needs to observe rules ... as a family carer , no rule book exists ... and the one to one standard of care in comparison ... ?

What you would do automatically , no care worker would undertake ... a clash of cultures ... as is the basic emotion of caring ... a care worker only " Cares " if they are paid to care ... otherwise , they would be employed in another industry.

You're on your own ... no gratuity ... the world outside has changed ... you intially feel like a dinosaur.

Even mixing with people is difficult , the art of conversation last tried , perhaps , years ago.

Feel both socially isolated and unwanted through no fault of your own ? Sleep patterns shot to pieces ?

That is a natural reaction ... it takes time to adjust even at the most fundamental level.

Better adjust quick ... being an ex carer means nought ... no medals to show , just presumed debts ... even less strands in that mythical safety net on the income front ... even your CA stops after 8 weeks ... now down to that pension you drewdown to starve off bankruptcy ... the last card available.

There's always the local job centre. For most , a real eye opening experience on many levels ... even to find someone inside that " Understands " where you are coming from ... " Caring ? What job did you do for the past xx years ? " ... not as uncommon as you may expect ... for starters ... and it doesn't get any easier thereafter.

Caring counts for a big fat zero with them ... even the old JSA is NOT automatic , it is based on income consideration ... another example of caring not seen as " Work " ... and yet , someone who is unemployed seeking work ... different ball game !

Seeking employment ?

A CV is almost essential ... quite a bit in past postings as to how to tackle that " Employment gap " , ie. caring. This is where the Job Centre come in ... if you are fortunate enoughto have a good advisor.

In essence , your CV should match the vacancy ... best to have several variations in one's arsenal ... some playing up the caring roll , some down ... all depends on what you are seeking.

There is no hard and fast rule ... pure luck may play a part ... the interview's husband / wife may be a carer ... definately a case of " Feeling lucky punk ? "

As a rule , don't overplay the caring angle ... it is not relevant in the majority of cases. Either you will be able to step into or job running or ... in some instances ... be on probation from day one.

To get into a " 9 to 5 " routine after so many years is another challenge ... and not for the faint hearted !

On the personal front ... dating sites ... former carer up front ? Stay silent ?

It's amazing as to the reaction some former carers have experienced ... mostly negative even if all other things have gone well ... even if " Going Dutch " as monies are a problem.

A little late and " Madame " has missed the last bus home ? No car , that went to survive a few more months as a carer ?
Madame looks at you for a contribution to the taxi fare home. Oh dear , last fiver left and 4 bluies needed ?

No long term worries ... we have all been there ... the same problem ... lack of reddies if not time watching ?

Any moral ? Yeh , wear a watch with a built in alarm !

Perhaps " Seeking a former carer " a better bet ?

Even then , two emotionally " Dead " people ... both relying on the other to help snap out of that condition ?

It's been known ... and done ... there will always be something there ... and no guide book exists for anyone to recognise what that " Something " is ... patience , a virtual in CareLand ... also on the outside ?

I speak from FIRST hand experience ... the caring never really leaves you ... it is now part of you.

I haven't touched apon another scenario ... an elderly and / or disabled carer ... now too frail to continue caring ... the fate of their caree ... and their own well-being ????

Only recently , a reported case of a 98 year old mother moving her 80 year old son into a care home so that she could continue to care for him ... and receive care for herself whilst doing so.

One situation my mother came across ... 83 year old blind mother / 57 year old son in wheelchair ... co-existing together ... each caring for the other , operating as one ... I leave that to you , the reader , as to what would happen if either was unable to care for the other.

PROTOCOOPERATION ... a word borrowed from biology / zoology ... just as apt when applied to carers and carees when both rely on each other to survive ... a partnership ... requiring JOINT solutions ... none of our supporting organisations recognise !!!!!!!

Both carers and carees at the same time ... far from unique ... and not one supporting organisation able to address their JOINT needs !

Ironically , you may having being caring for a caree with mental health problems. For whatever reason , the caring has ended ... and now , you yourself have mental health problems all of your own ... through caring.

The final goodbye to CarerLand is just as foreboding as saying hello to it in the first place.


Grim ?

Maybe but ... the problems to be faced are already there for many ... particularly so for any lone carers ... again , I speak from first hand experience.

If nothing else , another vote for a " Former Carers Welfare Officier " ... a former carer inside an LA whose sole function is to " Reintroduce " a carer into the new world outside ... one to one basis ?

At the moment , there is ... nothing.

One for our own supporting organisations to take on board.

The Voice of Carers ... all carers ? ... including former carers ?

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Any search engine ... FORMER FAMILY CARERS ... amongst the results will be some studies made over the years.

CARE ... written by academics ... NOT by carers themselves ... take any with a large pinch of salt !

Most read as dry as that proverbial lime burner's boot ... and as useful as an umbrella in a hurricane !


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Once a carer , always a carer ?

Not many would argue against that !

A few , like me , return to do what we can.

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A question for any academic / suit or other non carer reading this posting.

How many OLOGIES are involved in the above ... which one would you recommend as being the main one ?

A Survivalologist ... perhaps ?

There are no simple answers in ... CarerLand.
This is what Dorset provide- I thought I would copy the link in case anything is useful.

https://www.mylifemycare.com/carers-moving-forward

As we've been talking about pensions - could you expan on this theme Chris ?
"Even reaching the official retirement age ... and that state pension ... no help there ,,, your existing
private pension is around the same amount. So , have to make do with that ... doesn't even cover
much more than the necessities ... so much for freedom , imprisoned in a new way ?"

I've read through this but even more befuddled now.
https://www.gov.uk/additional-state-pension/eligibility
Gone through the link to see how much they think they will give me but all a bit of a jumble and still so far int eh future it will probably all have changed by then anyway
Dorset ?

Interesting ... a signpost ... as opposed to a former carer acting as a guide ?

Pensions ?

My private pension , drawdown at age 50 , is a few £s more than the current level of the state pension.

Banking sector ... final salary scheme ... contracted out as was the norm in that sector ... different today ,
my old mob have a pension fund deficit of £ 1.7 BILLION last time I looked ... and are making additional
contributions over the next 6 / 7 years to " Stand still " ... and that's a major bank for you ... in the hock
like everyone else !

Just enough for me not to be eligible for any benefits / allowances beyond a 25% reduction in the local
Council Tax as a sole occupant.

HB ? If I massaged a few figures , probably worth £ 8 per week or so but ... there is massaging , and there
is massaging ... if you follow my drift.

In 15 months time , I reach 66 ... if no private pension , and NI contributions are okay, I would receive the
state pension.

However , as my private pension exceeds the state pension , I receive nothing under the state pension.

I am therefore reliant on the income from that private pension until I die ... or supplement my income
in some other way.

If I've assumed wrong , it would be akin to winning the lottery!

If I hadn't needed to drawdown early ... essential during my caring days ... said private pension would now
produce half as much again as the state pension ... enough for me to enjoy a comfortable but sparse
life on that income.

Imprisoned element ? Purely on the economic front ... very few places to be able to live on my income
.... an economic migrant ! Once a banker , always a banker ?

For once in more than 20 years , have black figures , instead of a sea of red , on my Excel based private
financial situation.

The number one factor rearing it's ugly head again ... the level of Carers Allowance / Pittance !!!

The additional add ons to the state pension do not apply to me as my former employer's pension scheme
meant that I was contracted out ... they guaranteed to , at least , match the state pension when payable.

Even then , CARE ... there are catches NOT evident from the guidelines ... recommend an Internet search
..... top up state pension is it worth it ? ... latest news ... also next week's budget may make changes !

A problem for many former carers when needing some form of income during those caring years if no
other alternative was available ... a private pension ... the last ace up one's sleeve ... to be able to survive
today by sacrificing tomorrow ... just so one can continue to be a carer.
A little more , this time from Dr. Mary Larkin ... Senior Lecturer in the Faculty of Health and Social Care at the Open University ... another candidate for a Carers UK trustee postion ? ... a Blog entry from almost 3 years ago to the day :

Carers policy and practice: What about ‘former carers’ ?


Over the last thirty years there has been increasing policy emphasis on care in community-based settings for those with dependency needs. This, coupled with the long-term shift towards an ageing population and the improved longevity of those with life-long disabilities, has had significant implications for family carers.

In the United Kingdom there are currently 6.5 million carers; this figure is estimated to rise by 3.4 million by 2045 Whilst carers report that caring brings some benefits (such a sense of giving back and higher levels of subjective well-being), it is now widely recognised that caring impacts negatively on carers’ health and wellbeing, quality of life, income and capacity to remain in work (Carers UK 2014, Larkin & Milne 2013).

One of the less well-recognised consequences of the increase in the number of carers is that there are more ‘former carers’. These are carers who have ceased ‘caring’ because the family member for whom they cared has entered residential care or died. Despite the fact that 2 million people each year are currently in this situation (life post-caring is still relatively under researched and former carers receive little attention in policy and practice.

The lack of knowledge about former carers is highlighted by Cronin et al in their paper entitled ‘Between Worlds: The experiences and needs of former family carers’. This paper has been published online and will appear in a Health and Social Care in the Community Special Issue on carers in January 2015.

Methods

Cronin et al conducted a qualitative study of the experiences and needs of Irish former family carers in the post-caring period. A total of 40 family carers took part; 14 in a focus group discussion and 26 in one-to-one, semi-structured interviews.

The study builds on and develops previous research about the impact of caring cessation on carers’ lives, namely that there are a number of threats to former carers’ health and well-being, with financial problems and social isolation being particular issues.

Findings

The authors conceptualise the post-caring trajectory as a time of being ‘between worlds’ comprising three interrelated transitions:

‘loss of the caring world’
‘living in loss’ and
‘moving on’.

This supports earlier conceptualisations of a post-caring trajectory. The authors recommend further research into the ‘legacies of caring’ and the need for targeted support that is sensitive to the different experiences of former carers and to the specific phases of the post-caring experience.

Conclusion

The paper demonstrates an excellent grasp of the existing literature and research methods used are eminently suitable. However, the study suffers from the same weaknesses as other studies of former carers in that it is relatively small–scale, the sample does not reflect the diversity of the caring population and it is limited geographically. These weaknesses in part reflect the lack of funding available for research into post-caring life. This means that although studies are slowly building knowledge about the post-caring experience, individually they lack generalisability.

Although the areas for further research identified by Cronin et al are well-grounded in their findings, the reasons for such research can also be linked to broader issues beyond the paper’s immediate remit. These are:

the ever-growing demand for carers
the increasing intensity of care needs
more carers are likely to be supporting two people e.g. a disabled partner and a parent.
carers will be responsible for managing a greater range of, and often more complex, health conditions
many carers are ‘serial carers’ in that they undertake ‘further caring activities’

(Larkin 2009, Larkin & Milne 2014, Cronin et al., 2015)

Consequently, there are going to be more carers, more is going to be expected of carers and more people will become former carers. In turn, more people are likely to experience the adverse effects of caring both during caring and in their post-caring lives. This in itself warrants attention through policy and practice but its significance is compounded by the fact that many of those suffering the effects of caring will go on to care again with reduced capacity to do so.

Summing up

It is predicted that there will be a shortfall between the ‘demand’ for and ‘supply’ of carers in 2017 leading, to what many refer to as a ‘crisis in care’ (Pickard 2013). Arguably, health and social care is unsustainable without carers. Furthermore, the economic value of family care in the UK was estimated in 2010 to be £119 billion a year – that the annual cost to the National Health Service (NHS) in 2009–10 was £98.8 billion is a useful comparative figure (Larkin & Milne, 2014). For reasons such as these, we are going to need ‘all the carers we can get’, particularly in an era of public sector austerity measures.

Therefore it is imperative that we not only continue to develop policy and practice to address the negative impacts of caring on carers, but also develop interventions to improve carers’ lives post-caring, not least because of the likelihood that they will be needed to undertake some form of caring again to meet the growing demand for care.

Whilst there is a clear economic rationale for the proposed additional dimension to future policy and practice around carers, the moral rationale in relation to carers rights and social justice is equally important. Both elements of the rationale call for achievable solutions. The role of carer-related research in helping ‘to ensure that caring is prioritised as a significant issue for social policy and practice’ (Barnes, 2006 p1) has been acknowledged across a range of platforms.

Cronin et al’s paper is timely in that it directly raises the profile of former carers and indirectly raises questions about how post-caring life is being researched. As this blog has shown, the outcomes of demographic and policy changes lead to a compelling case for an increased emphasis on former carers. Given the value of research in informing the development of policy and practice, the time has now come to reconsider the nature of, and funding made available for, research into life post-caring.




In essence , a little eyebrow at times but ... similarities between her deductions and mine ?

One to ponder on ... no rush ... our supporting organisations have totally ignored former carers ... until now ?
Anyone taking on family caring needs to be soundly advised on a risk-benefit basis of what they are letting themselves in for economically, and yes, emotionally/psychologically too, from whichever choice they make.

Even something as simple as warning them to insist that, say, a council tenancy is moved into their joint names, so they are not made homeless when their caree dies, is vital.
As mentioned earlier ... as almost a rule ... what goes into caring ... you ... is NOT the same as what comes out.

Upto now , this problem has been TOTALLY IGNORED by our " Supporting " organisations.

Also , bear in mind that the " Caring " might start virtually overnight without warning ... again I speak from first hand experience.

A prisoner on release receives support from several different organisations.

Carers' Rights again ... same as for prisoners , please !

Prisoners and ... guide dogs ... you could not make that one up if you tried !

" Not our problem ! "

Then say so ... your justification will make " Interesting " reading.
A link to a previous thread ... a few months under a decade ago ... that dovetails into this one :


https://www.carersuk.org/forum/support- ... carer-2280


The employment issue is interesting as is a former carer's experiences of the usual side effects when the caring ends.

Time for our own supporting organisation to take an interest ... albeit 20 years too late for most ?
Needless to add ... the ARCHIVES of this section ... FORMER CARERS ... provide numerous threads which , despite the age , can be of immediate assistance to many who now find themselves in this " Category. "

Well worth exploring and , for some threads , worthy of being resurrected as the problems / solutions are still relevant in this Sad New World of 2018.
Chris From The Gulag wrote:
Wed Nov 15, 2017 4:57 pm
Dorset ?

Interesting ... a signpost ... as opposed to a former carer acting as a guide ?

Pensions ?

My private pension , drawdown at age 50 , is a few £s more than the current level of the state pension.

Banking sector ... final salary scheme ... contracted out as was the norm in that sector ... different today ,
my old mob have a pension fund deficit of £ 1.7 BILLION last time I looked ... and are making additional
contributions over the next 6 / 7 years to " Stand still " ... and that's a major bank for you ... in the hock
like everyone else !

Just enough for me not to be eligible for any benefits / allowances beyond a 25% reduction in the local
Council Tax as a sole occupant.

HB ? If I massaged a few figures , probably worth £ 8 per week or so but ... there is massaging , and there
is massaging ... if you follow my drift.

In 15 months time , I reach 66 ... if no private pension , and NI contributions are okay, I would receive the
state pension.

However , as my private pension exceeds the state pension , I receive nothing under the state pension.

I am therefore reliant on the income from that private pension until I die ... or supplement my income
in some other way.

If I've assumed wrong , it would be akin to winning the lottery!

Chris, I think you have assumed wrongly. Everyone who has enough NI contributions or credits gets the state pension. Whether you also get a private pension is immaterial to receiving the state pension as it isn't means tested.
Jointly the 2 pensions might mean you are not eligible for certain benefits, but as I read it when you get to your state retirement age (66 in your case I beleive) you will start to get your state pension AND your private pension
Chris
Check out your entitlement to state pension here
https://www.gov.uk/check-state-pension