A note to all those of you who are unfamiliar with the social care system and NHS:
- The NHS (Gawd luv ‘er) is a vast lumbering institution set up to deal with your health care needs. It is successful in many aspects, woefully inadequate in others but FREE AT THE POINT OF ACCESS.
- Social care is set up to deal with social needs – mobility aids, meals on wheels, residential care etc and it is MEANS TESTED.
Whilst neither system is flush with cash, social care is the poor cousin of the NHS (and that really is saying something) so you basically have to be a pauper to get any freebies. Conversely, even if you are The Duke of Richminster visiting your London home and you have the misfortune to crack your head open slipping on the marble steps of your basement pool you will be treated free of charge by the NHS. Odd no? The state will sort you out if you are ill, irrespective of how affluent you are, how expensive you become or what a massive economic drain you represent. The state wants little to do with you however if you are merely old and frail. Dementia is a medical condition like diabetes, but whereas with diabetes the consequences are also medical (retinal damage, kidney damage, amputations, heart disease) and therefore are treated free of charge, dementia’s consequences are usually social and therefore disregarded – until that patient crosses into the medical world by falling downstairs and breaking a hip or aspirating their tomato soup and giving themselves a pneumonia.
The Kings Fund have developed a lovely set of short video clips to explain this in more detail, using (for reasons best known to them) a variety of kitchen utensils and condiments to represent different parts of the welfare state:
Even with such a helpful guide (and a speaker who appears inordinately fond of extravagant hand gestures) the reality, in practical terms, is that it can be very difficult for families and carers to know what they are entitled to and how to access different aspects of care. The days of your GP having intimate knowledge of the multitude of agencies and organisations that may assist you, being able to locate the forms for these agencies and help you complete them – or even knowing telepathically that you may need assistance from these organisations in the first place – are gone. GPs need to concentrate on all the annoying medical stuff nowadays, they can’t be counsellor, vicar and friendly uncle wrapped into one Doctor Findlay of loveliness AND sort out the diabetes, heart disease and possible cancers – soz. You are essentially on your own and you have to shout pretty loud to make yourself heard above the clamour of others in a similar situation.
The first hurdle is identifying when you need help. In our family’s case the bit of mum’s brain responsible for purposeful motor function continues to be nibbled away by the dementia mouse and in the past couple of months she has been less able to navigate stairs, get into a car or even sit on the loo. Some of the issues are to do with momentum; if you are walking mum (excruciatingly slowly) towards an car with an open passenger door you can often convert that walk via a fairly smooth transition to a foot in the footwell, a turn of the hips, a bend of the knees and hey presto, mum is in the car seat. If you hesitate however, you are lost. Abandon hope all ye who enter here. This is Tiger country etc etc. Standing beside the open car door trying to persuade a reluctant and confused person to complete the complex sequence of manoeuvres required to gain access to the object that is no longer recognised as a vehicle is almost impossible, as is wrestling her in (proving dangerous for both wrestler and wrestlee). Compound the situation by adding darkness and rain or perhaps an icy path to the car and you have at least thirty uncomfortable minutes ahead of you.
Equally, getting mum into the bathroom is one thing, getting her to realise that she hasn’t been to the loo for hours and probably needs to go is another and finally, persuading her to actually bend her legs and sit down in a fairly central position to avoid sliding ignominiously off the seat can seem a herculean task of such mammoth proportions that the risk of urinary retention may be considered preferable (I jest, urinary retention is NEVER preferable).
It can seem that there are no easy solutions, just the bleak prospect of fewer car journeys, fewer trips to the first floor of a building and increasingly poor toileting, but HANG ON!!! Have I ever left you with an unremittingly negative picture before?!!!! (yes, many times). There ARE easy solutions – and these solutions come courtesy of a wonderful, wonderful group of people called Occupational Therapists – HOORAY!
Occupational therapists can assess specific individual needs and then tailor very practical advice with brilliantly simple gadgets to enable all sorts of daily activities – it’s not just bath rails and non-slip flooring – oh no. The question, as with all these things, is how to access these modern day miracle workers? The answer, as with all these things, is dependant on where you live, how well you understand the system and whether you want to wait for a referral or pay for a private assessment. My suggestion would be go to your GP. I know I spent the entire previous paragraph counselling against this, I know we are confused people dealing with extremely confused people and me contradicting myself doesn’t help. Ideally what I mean is go to your practice and a friendly receptionist may be able to help you without using up a ten minute medical appointment. If not, your GP can probably take a short break from saving lives, curing cancer etc and point you in the right direction. When dad went to ask in his local practice he was signposted to a lady who spends her entire week co-ordinating care for older people. I mean this really is a local health authority triumph that almost makes up for the time we spent as a family in the sixth circle of hell trying to get a diagnosis. Also look on your local council website. You can often request a social services assessment yourself and by now you probably need to look at other aspects of social care or at least be known to the services (getting one’s foot in the door, or indeed, one’s walking frame in the door is the hardest part).
And, lest we forget, there is always Youtube – see below. Be careful though – googling ‘videos of people on the toilet’ could get you into a tricky situation.