Introduction
We don’t want it to happen, they don’t want it to happen, but sooner or later it happens all the same – our parents grow old.
It’s a huge responsibility for families. How can you all come through it with grace, keeping their dignity intact along with your sanity – and everyone’s sense of humour?
The answers lie in this book. It’s a practical guide through the labyrinths of the NHS, Social Services, nursing homes, and all the other organisations you’ll have to deal with; it will walk you through the financial and legal complexities you’ll encounter.
But it’s much more than that. This book will take you inside people’s personal experiences – give you insights from everyone’s point of view – elderly parents tell you in their own words what they thought and felt when their doctor – and their children – were saying they couldn’t live at home without help any more, and those children tell you how they felt about saying it; how a daughter tried to persuade her father to stop driving – and what her father thought about that. Family stories on everything from home helps to hospitals, to selling the house, power of attorney, probate – it’s a long list and it takes you on a journey that begins before any problems appear.
These voices will help you deal with what is happening in your own life. They’re moving, perspective-changing, sometimes funny and strangely cheering; they’re the voices of people who know, we’ve been there - felt the guilt, faced the fear, torn their hair, agonised over decisions. Everyone’s experience is different, but as this book will show you – you’re not alone.
Chapter 4
When A Move Is Inevitable
It’s been said that you can judge a civilisation by the way it treats the very young and the very old. If that’s true then it puts a few question marks in the margins of our own social history as far as the elderly are concerned. It’s not so much that individuals or families don’t care, it’s more that the way society is structured makes it harder, rather than easier, for people to do anything practical about that caring.
The infrastructure of care for the elderly, and the way the state deals with the financial issues at both national and local levels, can make things even more difficult, sometimes in ways reminiscent of the Poor Law in the 19th Century. If you can pay, you might get lucky – if you can’t pay, you’re effectively in the hands of your local authority, your freedom of choice at best severely limited. Move 100 miles to be in sheltered housing nearer your family? Well, you’ll have to go to the bottom of another waiting list. Don’t like this care home? Sorry, there’s nowhere else…
It’s appalling that if you’re a loser in the postcode lottery you can wait years (if you have years) for the right kind of local authority sheltered accommodation – or take what no-one else wants…
It’s terrifying that standards in residential care homes, both state run and private, can vary so widely…
It’s shaming that elderly people have died while waiting for their finances to be correctly assessed by their strategic health authority – and that there’s scope for faulty assessment…
It’s worrying that scandals and scare stories concerning the care of the elderly appear so frequently in the media...
It’s no wonder then that we’re inclined to stick our heads firmly in the sand when it comes to facing up to moving out of our own home. It can seem like hell waiting round the corner. Sometimes it takes a sudden cataclysmic event like a severe stroke or a heart attack to bring us face to face with some hard decisions.
And there are plenty of other reasons for reluctance – it’s a highly emotive area for everyone. Just the thought of breaking up your parents’ home and depriving them of the final shreds of freedom can make you feel guilty. To your parents the thought can seem like surrendering their whole identity.
Then there’s the question of what kind of care they’ll need and where they’ll live – with you or another family member? In sheltered housing? In a home? What kind of home? What will be best for them, and for you? What will they want, and what do you want? How much will it all cost and who’ll pay?
This is the last step, and your parents know that every bit as well as you. From the decisions made now there’s likely to be no going back. Your parents’ happiness and your own peace of mind – now and long after they’re dead – depend on tackling this as openly and carefully as possible.
It can be done. Local authorities aren’t monsters, but they do have too big a workload and too few resources. They’re stretched, often to the limit; they sometimes mess up badly, but mostly they do mean well, even when they’re catastrophically bad at showing it.
Getting The Right Level Of Care
If you begin to worry that your parents are losing their ability to cope at home, the best way to start is as always, with your parents’ GP, care worker or district nurse. Talk to your parents about the fact that you’re worried and suggest an assessment. Once you alert social services or the NHS they should visit your parents anyway. They regard assessments as very much an ongoing process, and they’ll give an expert evaluation of your parents’ ability to continue caring for themselves at home.
They’ll look at whether one or both of your parents need actual nursing, their physical and mental state (blindness, immobility or dementia for example), and the suitability of the house they currently live in. If social services feel that staying in their own home is no longer a possibility, the written assessment will specify the level of care they feel would be best.
Once your parents get their copy of this, suggest to them that you all sit down together with the social worker and talk about what’s being put forward. Remind them they’re not obliged to agree with the assessment. Explain that it will give them the chance to ask social services some questions, and that you’ll be asking questions too. A meeting like this is better than your parents being told things they might forget by someone you’re never around to see. Tell them not to worry, that nobody can do anything without their consent. Reassure them that they have the final say, that they can’t be moved into sheltered housing, residential care – or in with you for that matter – against their will.
Have a lot of chats with your parents about what they want – and really listen to what they’re saying. Encourage them to be honest, tell you frankly how they feel, not to worry that you’ll be offended (try not to be). The truth is what matters here.
It’s best if you can avoid giving your own views to start with, then they won’t feel you’re pushing them in any particular direction. You can say what you think later – or when they ask you! What’s important is that your parents feel unthreatened, unhurried, and able to reach their own conclusion.
Whatever the outcome and wherever they end up living, it’s vital to their peace of mind that they make the decision themselves, even if they need help to do so.
Continues…
Residential Care Homes
Moving into residential care can be some people’s biggest fear – and it’s not surprising. Quite apart from the difficulties of finding a good care home, the scare stories and bad publicity, there are all the emotional and psychological factors.
As you get older your responsibilities seem gradually to melt away. Your children grow up, leave home, have families of their own; your grandchildren become too old to need babysitting; you retire from work. Relatives and friends of your own age start to die – the people who knew you when you were young and a force to be reckoned with are disappearing. Your world is shrinking.
The one place where you can still feel whole is your home. It’s full of memories and, almost equally important, things – tangible reminders that you were once a person with a ‘real’ life.
‘I can’t go into a home – my things need me.’ Maud, aged 80.
Continues…
Accepting The Situation
If it becomes clear that residential care is the best way forward it’s a good idea to sit down with your parents and talk it through. Whatever the professionals recommend, and whatever you personally feel is the best option, try to approach the subject in an open-minded way. It’s OK to stress the positive aspects – the freedom from anxiety, the comfort – but listen to how they feel about it. Give them space to voice their worries, and take their fears seriously. To you it may seem like the answer to all their problems, but to them it could feel like the end of the world.
Try to explore options, even if there don’t seem to be many, and to stay flexible. Your parents’ dignity is one of the few things they have left, so at all costs avoid the phrase ‘it’s for your own good’. Remember how you felt as a child when someone said that to you.
Continues…
As a society we tend to define ourselves by our role in life. Whether it’s your career, or caring for your family, or both, who we are is what we do, and once that ceases we can feel useless, invisible, even non-existent.
We all might fantasise about retiring to a life of leisure, but when it happens many of us find the reality hard to come to terms with – and we’ve still got plenty of daily choices and chores. What if you can’t choose?
What must it feel like to know that you can’t ever again mow the lawn, do the washing up, peel a potato, make a sandwich, because you don’t own a lawnmower, washing up bowl, a kitchen knife – a kitchen; that there’s nothing at all you have to do, forever, until you die.
Continues…
Guide 1: Sheltered Accommodation – What’s Available
Guide 2: Advice On Sheltered Accommodation
Guide 3:Care Homes – Where to Look
Guide 4: Finding a Good Care Home
Guide 5: Care Homes – Who Pays?
Guide 6: Couples and Financial Assessments
Guide 7: Choosing A Care Home – Your Rights
Guide 8: Moving In With You - Grants/Benefits
