Thursday 3 July 2008

Shutting down

We don't see too many people these days. It's just the two of us, for most of the time. That's the way our family is, two children each from previous marriages, two of them seriously ill, none of them available for regular visits. The extended family is now the scattered family for many people. The notion of family care, lost forever for so many of us.

Depression is a normal state of being in a home where degenerative illness dominates. It is such a change from the way we were. We both used to be activists. Mature students, a teacher and an adult educator, Labour Party enthusiasts, ( who could be enthusiastic about the Labour Party these days ) and trained counsellors. Our lives were very busy and very full.

Perhaps we ought to know better how to manage this situation. We have the training, we have the skills, but it has been so overwhelming and so relatively rapid, just one thing after another until disempowerment seems to be the norm. It isn't as though we haven't fought back, we have both always been fighters, endlessly trying different ways to obtain some purchase on the situation, some degree of control over our own lives.

For me, the amazing thing has been the obduracy of 'the system'. The democratic collectivism which I have always entirely supported, the welfare caring state which Labour people so painstakingly constructed, absent when we ourselves needed it, destroyed by the betrayal of New Labour.

Of course, there is much which is subjective about all of this. Not everyone will experience the reality that we have in our situation. My partner in her sixties with early onset degenerative illness and me in my seventies with the infirmities of old age taking hold, have found that we are in a category which is seen as being beyond redemption. It is to be tolerated and managed, not reformed. We can't get 'them' to take us seriously somehow. It has been a revelation.

I guess the dawning realisation that you are no longer fun to be around, is difficult for all infirm ageing people to accept. We have tried getting out and about and still do, believe me, the struggle isn't over yet. Perhaps writing about it is , in itself, a way of exerting some small degree of control over an impossible reality. I have, it is true, been shutting down for some time now, but I'm still here you know.

10 comments:

Anonymous said...

How strange, Dugsie, that I came on here today to comment again on your post about the 24/7 carer and found this.

Your words "24/7 caring is a largely unmitigated evil" came to my mind when I realised that I couldn't safely negotiate crossing the road to the taxi waiting on the other side and ensure either my or my husband's safety, I had to ask someone for assistance. I felt utterly useless and utterly powerless. You see our circumstances are such that we rarely go out and this monthly trip can be an indicator of how far our abilities to function have deteriorated, at home the deterioration is incremental and not so noticeable.

The unmitigated evil I had in mind was not that of being a carer per se but that of being a carer at a time when the government and the society it represents are willing to look on untouched as our dignity and self-respect are stripped away layer by layer for the sake of a few pence on income tax. Would we now be so lacking in the ability even to cross a fairly busy road if we had had help when we requested it? It's unlikely. Would so many carers be experiencing similar feelings if they had sufficent assistance to enable them to maintain their health and have something vaguely pertaining to a normal life? That too is unlikely.

We will, of course, go out again, I'm not ready for the life of a recluse,in particular the life of a recluse who has not chosen the solitary life, and again no doubt yet another layer of my dignity and self-respect will be stripped away until nothing is left to allow me to feel even partially human. The Nazis had a word for people like me: the disabled, the usless eaters, we were called the untermenschen, the fact that the frail, sick and disabled are caring for other frail, sick, disabled family members makes not one iota of difference to this government, in their eyes we are indeed the useless eaters, the untermenschen, a burden on society and undeserving of the assistance or the means to buy it that would enable us to be more equal citizens and feel fully human.

Dugsie said...

Hi Parsifal

Glad to see you here.

People may well think that when I describe 24/7 caring as an unmitigated evil that I am being provocative. Has anyone else ever said that, to your knowledge ?

I am certainly very sick of the sanctimoniousness associated with people's attitudes to 24/7 carers. If they think that we are so bloody wonderful, then why don't they do more to help us ? How can they leave you in such need, in a society of plenty ?

If I was to leave my caree, wouldn't she perhaps then get the care that she needs, the care which I cannot give her ? All the time I am here, she won't get it. How much good do we do each other, each watching the other decline beyond our ability to help. This is good is it ? This is a noble endeavour ?

The fact that the NAZIS may have thought that disabled people were not worth the food they ate, should make society value them the more. You know your own worth. Nobody can take that away from you. Think of the great physicist. He is worth more than any damned NAZI ever could be. As, indeed, are you. I certainly value you as a friend.My despair arises from the nature of the society we have created, which values greed more than caring.

Anonymous said...

"People may well think that when I describe 24/7 caring as an unmitigated evil that I am being provocative. Has anyone else ever said that, to your knowledge ?"

I'm not sure whether the question relates to describing 24/7 caring as an unmitigated evil or your comment being provocative but in both cases the answer is no.


"I am certainly very sick of the sanctimoniousness associated with people's attitudes to 24/7 carers. If they think that we are so bloody wonderful, then why don't they do more to help us ? How can they leave you in such need, in a society of plenty ?"

This sanctimoniousness was once applied to sick or disabled people before we became benefit thieves, fraudulently milking the taxpayer of their hard-earned income. We were, apparently, uncomplaining saints, suffering in silence, patiently waiting for someone to help us and eternally grateful. Really? I must, therefore, be an aberration, although experience of other people with disabilities would indicate otherwise, we're neither saints nor sinners, just ordinary people demanding an equal share in society and in need of assistance to access this share.

The same goes for carers, people who don't choose to find themselves in this situation, who don't choose to be forced to spend every long waking hour with sole responsibility for the welfare for another person and who want to be able to participate more fully in society both economically and in every other aspect. As with the sick and disabled, given the choice, we would have very different lives but we haven't been given the choice, when we went reluctantly to the State and asked for what we believed was our right, our part of the contract to be upheld, we discovered that we'd paid our taxes and been responsible, law-abiding members of society but that the government had broken its side of the contract.

We do this because we have to, not because we're wonderful, caring people and telling us that we're wonderful doesn't pay the bills or enable us to live lives worth living, on the contrary, it's an insult to our intelligence and degrading, people stopped patting me on the head when I was a child, I don't appreciate the verbal equivalent in adulthood.


"If I was to leave my caree, wouldn't she perhaps then get the care that she needs, the care which I cannot give her ? All the time I am here, she won't get it. How much good do we do each other, each watching the other decline beyond our ability to help. This is good is it ? This is a noble endeavour ?"

I too have wondered this and I'm sure we're not alone. Wondering whether we're doing the right thing, whether by staying we're harming rather than ensuring the welfare of the person we care for is just another of the stresses we unsupported carers live with in our daily lives.

Theoretically, if your wife meets the eligibility criteria she should be receiving services regardless of your presence, the same applies to you as a carer and in respect of the needs your health status creates. The reality appears to be rather different, our presence does appear to influence decisions regarding provision of services.

But the decision as to who should and should receive services is far more complex than meeting eligibility criteria and whether someone else can take the place of the State in provision of care, it encompasses available funds, the culture within the local social services department and even the area office and intangibles such as the particular social worker allocated to your case, his/her attitudes and personal prejudices.

This would apply equally whether you are there or not, ultimately it is the perception of one person, based on a brief, snapshot view of your wife's needs that would determine whether she would receive the care that you currently give, however, as is mine, inadequate. I don't think that either of us would be willing to depart and leave our spouse to the lottery that is care in this country today.


Ultimately this is a society which prefers the cheap weekend flight to a foreign city, the meals out, the latest gadgets and the ever-changing, TV-influenced decor to ensuring that those in need are catered for in a way which ensures that they live lives with dignity and respect, lives that have some fulfillment and quality. Not only has the government pandered to the Thatcherite selfishness that epitomises British society, it's actively encouraged it. What hope for the likes of us other than an eternity on the bottom of the dungheap.

Dugsie said...

Has it come to this ? The adoption of fatalism as our philosophy of life. Somehow I don't really believe that either of us are like that.

Anonymous said...

Never have words from friends affected me so much.As I read the exchange between you both I felt as if I was eavesdropping on a private chat and was torn between stopping reading and going on.As you can see I went on.

What you both describe is faced by many others and no doubt in time the numbers will increase.

The crisis is on us now regarding everything to do with Social/Health care but like always no one seems to be listening.

.

Dugsie said...

You're a friend too Rosemary. You are very welcome to join our conversation.

My feeling is that silent heroics should be discouraged among carers. We need to speak out about the reality of our situation. We can't allow our communication with the wider world to be mediated by those who claim to speak for us bur can't, because they are not us. Nor have we elected them to represent us.

We speak for ourselves.

Anonymous said...

Dugsie said: "Has it come to this ? The adoption of fatalism as our philosophy of life. Somehow I don't really believe that either of us are like that."


Not fatalism, realism.

It took us nearly 30 years to get to where we are today and, rather than returning to pre-Thatcher values, New Labour has progressed the right's agenda at a speed which Thatcher could only dream of. This shift to the right hasn't yet run its course and it may well be beyond our lifetimes before we see a similar move in the opposite direction and a return to the values of the Welfare State which, flawed though they were, promised justice and equity for all and engendered in the majority a sense of collective responsibility rather than the current individual responsibilty imposed on the poor which so many of the disadvantaged in society are not in a position to fulfil whilst rewarding the selfish and the greedy for their capacity to succeed.

Polls before the 1997 election indicated that the public wanted more equality, not less, and were willing to pay more to ensure that the poor had better lives and that all had improved public services. Blair responded with "compassion with a hard edge" but there has been no compassion, rather talk of tough choices which impacted not on those who "had" to make these choices but on those who were subject to them, invariably the low-paid, the unemployed, the sick, the disabled, the elderly.

Blair talked of ruling for "the many not the few" and that is indeed what he has done and Brown continues to do, not in the inclusive interpretation that we are intended to believe the phrase to mean but in the exclusive interpretation of ruling for the benenfit of the many who able to compete in this meritocratic society whilst ignoring the needs of the few who do not have the means to compete.

Our society is indeed, as the Tories describe it, broken, broken by politicians of all colours who ignore social history and the mistakes of the past and push us towards an ever more divided society whilst talking about community.

Far better to acknowledge the reality of our times and deal with it as best we can than dream of a utopia which will not exist in our lifetimes, if ever, whilst living in a dystopia.

Dugsie said...

Well of course, I agree. I have thought of joining the Green Party and the Green Left in particular. Derek Wall has posted on here. Have you visited his site ?

Avenger said...

"I have thought of joining the Green Party and the Green Left in particular."

Don't think - just jump! You can always leave if you don't enjoy it.

But that's not what I came here to say.

I came here to damn certain aspects of the Blessed Welfare State - which has always been the thinnest and most fictional of safety nets.

The Workhouses continued right into the 1990's, rebranded, but still the same mentality. The peak of institutionalisation of disabled people was not in the 1930's, it was in the 1950's and 1960's. In the good old days abuses like the forced use of LSD on vulnerable psychiatric patients, 70 beds to a Ward, ECT, even straightjackets and padded cells, were all part of the scene. Around 350,000 British citizens were permanently resident in this NHS Gulag. Last night there was a good programme on the TV about an isolation ward for women who were merely carriers of typhus, condemned to life in a remote NHS psychiatric hospital, left to die in paupers graves.

I spent the best years of my career closing down these places in the 1980s and 1990s. They were horrible - and whilst care in the community wasn't perfect, far from it, it was infinitely better than care in institutions.

Lest We Forget.

Dugsie said...

I agree Victor that there has been much institutional abuse of vulnerable people over the years. However, I fear that all too often care in the community means no care at all.

There are many situations in which family carers are themselves sick and disabled and struggling to cope with their caree, when they, themselves, really need care, which is all too conspicuous by its absence. A lot of these carers are elderly and progressively getting worse.

As a society, I think, we should spend less on illegitimate wars, Trident, new aircraft carriers, the Olympic Games, etc. and more on good quality care.