The Age Page

Days of double standards in dying

When my mother was very ill and later, when she was close to death, we spent a lot of time together. My sense was that for the last months, her quality of life had probably "flat-lined", even if she still had a pulse. I wouldn't wish her condition on anyone. 

Although there have been many column inches in the press about the value of life and the need to preserve it at all cost, I wasn't finding it at all easy to sympathise with this point of view. I would often wonder what she was feeling – and how someone with such deep dementia could make any kind of sense of the process – and whether, if she had the choice, she would want to keep going, or whether she would prefer not to. 

Of course, unless you live in Oregon or go to Switzerland, even if you are capable of making the decision that assisted suicide is just the ticket for you, you are unlikely to take it without implicating a friend or loved one in a criminal act. Even so, 115 people from the UK have already done it (none of  their "compassionate assistants" has yet been prosecuted).

One can only feel for Debbie Purdy and her family. She is terminally ill with multiple sclerosis and after losing both High Court and Appeal Court cases, took her case to The House of Lords this week. Lord Falconer and Dignity in Dying supported her in her bid to change the Suicide Act and allow loved ones to accompany the dying abroad.

Lots of the oldest old and other older people – often with little or nothing to look forward to – are kept going by our system, which appears to favour quantity over quality. And yet, many of the oldest old die every day at the sometimes careless hands of the NHS whose staff can be ill-equipped, untrained or unable to deliver proper care to them. 

Things will have to change as the ageing population demographics take hold. One effect of this may be that we will have to accept the perhaps surprising idea, that living well is ultimately better than dying long.

Image: Gokuraku

Will Banksy be an elderly thug for life?

I'd be pretty happy to have him sitting next to me in the care home knitting. 

Image: Thanks to Banksy

May she rest in peace

My mother died on 25th May. 

We buried her on Thursday this week, in a seagrass woven casket covered with huge white garden roses and creamy-white climbing roses – her favourite flowers – and Viburnum, Agapanthas, Hosta and Eucalyptus leaves and grasses, which cascaded over its edges like a slightly unruly garden. 

The sun shone as she was lowered into a grave under the dappled shade of a fruit tree in the cemetery. Family and friends came from far and wide to mark her passing. We all cried.

In a way, we started losing her nine years ago, but perhaps because we spent so much time with her in her last years and watched her struggle with what she could not articulate, nor possibly understand, oddly, her death was still shocking. 

Dementia is the cruellest of diseases. Like cancer, it seems to seep out of the person suffering from it and affects everyone around them, but it is worse because it denies communication and therefore solace. We can only be thankful that its grasp is now gone and be grateful for her life and for all that she gave to us. 

I loved her. May she rest in peace.

Dying to leave, dying to stay

As a small child, for three years I was sent to a Catholic convent school where I remember learning about five main things: guilt, hypocrisy, cruelty, purgatory and hell. It was mostly a dismal experience.

Luckily for me, there was a fire and the school closed, so I was moved to the local village primary school which by comparison, was like heaven – something we had learned was desirable, if mostly unattainable (for obvious reasons).

And now, fifty or so years later, my 90 year old mother, who has had dementia for about nine years and has been living in a care home for six years, is dying. Last month she had a bad fall. 

As a result of her dementia, she was unable to explain what kind of pain she was suffering, but she was taken by a carer to Middlesex Hospital where she was kept in a wheel chair without a cushion for seven hours with no food or drink, while they did frightening things to her like taking x-rays and blood. The hospital said she had fractured her pelvis and advised rest. 

The hospital staff should be truly ashamed of themselves. But I have seen this lack of empathy and care for elderly patients on a number of occasions in hospitals in recent years – they posture at caring but have little or no regard for elderly people and little idea how to care for them. Little point in complaining, as they only use excuses and never express guilt or sorrow. They are hypocrites.

One result of this appalling experience sitting in the wheelchair all that day was that she gradually developed a serious posterior pressure sore. The carer was furious with the way she was treated and said as much, but was powerless to do anything except to get her back to the home as soon as possible. 

Since then the home's care team have done their best to alleviate her suffering, but for a woman of great personal strength and dignity, it has been a truly nightmarish experience. At first she was semi-bed-bound but after developing a urinary tract infection, she was moved to her bed round the clock. 

We have all taken it in turns to visit her. Then last Friday, my siblings and I were called to her bedside. Her condition which had been deteriorating for some days had suddenly worsened and she wasn't expected to last the day. We had all expected her to pass away at the weekend, but five days later she is still with us.  

Since then we have watched her go into a place that is neither life nor death and I can only describe as purgatory, we just have to hope it isn't hell for her – of course, her dementia means that she is unable to tell us. And now we feel guilt, for  none of us want her to have to go through this, yet of course, none of us want her to die either. So perhaps oddly, the lessons I learned as a small child were a portent of future events...

The End of the World may be Nigh, so keep thinking – but not about yourself.

Last week, Richard Owens in The Times wrote about the remarkable and beautiful, elegant Italian Nobel-winning neurobiologist and recent centenarian, Rita Levi-Montalcino.

Far from being retired, she is still active in a range of different spheres, including Italian politics, women's rights in Africa and science. 

Although she is not tired of life, she is less than optimistic about the future and warns that using the intuitive (right-hand) side of our brains is not only causing disasters, it is also taking the human race towards extinction.

She says she has "tried to live with serenity, using the rational left-hand side" of her brain, so she attaches little significance to her birthday and feels that there is little merit attached to it. 

"The secret of life is to keep thinking. " she says, "...and to stop thinking about ourselves. That's the only message I have."

When being a female may be an advantage

                                      

Scientists in the US have reported that mild cognitive impairment, like problems with memory and thinking which is known to be a transition stage before dementia, appears to affect older men more than it does older women.

Dementia is a general term for the loss of memory and thinking skills, when it is severe enough to prevent a person from doing normal everyday things such as taking care of themselves, going shopping, paying bills, washing, preparing meals.

The results came from one of the first studies conducted to determine the prevalence of mild cognitive impairment among participating men and women who had been randomly selected from a community.

A person is described as having cognitive impairment when they show problems with memory and thinking that is beyond what might be expected for their age and level of education. Although mild cognitive impairment appears to increase the risk of developing Alzheimer's Disease later, it is not a foregone conclusion.

Investigators interviewed, examined and administered cognitive tests to just over 2,000 people aged between 70 and 89, in Minnesota. They also interviewed people who knew the participants well, for example wives or husbands, about the participants' everyday cognitive functioning.

The participants were classed into three groups: normal cognitive functioning, mild impairment, or dementia.

The results showed that nearly 17 per cent of the group had mild cognitive impairment and that men were 1.6 times more likely to have mild cognitive impairment than women (regardless of the men's level of education or marital status).

The findings contrast with research that showed more women than men – or an equal proportion – have dementia. This could be due to a delayed progression to dementia in men, or women may develop dementia at a faster rate than men. 

However, scientists caution that the results should be seen in perspective, as the genetic risk factors involved in dementia are much greater in magnitude.

Lifestyle factors are also important, and both men and women can reduce their risk of getting dementia. For example, maintaining an active lifestyle rich in mental, social and physical activity and adopting a "brain-healthy" diet that is low in fat and cholesterol and high in dark vegetables and fruit helps.

 Image: NYTimes.com

 

Product Design for the Oldest Old

My mother, who has vascular dementia, lives in a Care Home. At 90 years of age, she has coped very well but recently she had a fall, fractured her pelvis and hit her head. She hasn't been the same since and can no longer support herself on her legs. She seems even less able to communicate with the few words left in her vocabulary – although her non-verbal communication is still largely intact – and she is spending increasing amounts of time in her bed. We are all concerned about the ever present problem of bed sores, so she is 'got up' for short amounts of time to sit in one of the armchairs in the lounge with her feet up.

When on one of my daily visits last week, the carers were moving her from the lounge back to her bedroom, as she had been up for a few hours. The only way to do this was using a full body hoist. 

Of course, I have seen the hoist being used with other residents and had turned away out of respect for their privacy, so I had never experienced it up-close-and-personal, so to speak. it is not dissimilar to the one in the picture.

For those who haven't seen one in use I will briefly describe it. It consists of two parts – the motorised stand on wheels that moves the hoist up and down and swivels from side to side; and a heavy-duty, nylon woven vertically ribbed sling that supports the person's upper back and head and has wide straps that are connected around each of the person's upper legs. The person being hoisted holds on to bars on either side of the hoist contraption. 

Once they are secured, by clips, in the sling, it is attached to the hoist and the motor moves the sling up to lift them and then lowers them into a different location. I have excluded a picture of the sling because in the main, the marketing images for such devices feature young smiley blonde women looking neat and tidy and fully dressed – and un-phased by the experience. There are a few different designs of hoist, the sling at my mother's home is mostly pale cornflower blue and the hoist is pale turquoise and cream. 

All well and good, you may think.  

Here are a few of my casual observations of it:

1 The fabric that goes around the legs is a strong but stiff, scratchy nylon has no soft lining, so rubbing against the sensitive, delicate bare skin of a very elderly person is deeply unpleasant, especially on the inner thighs.

2 The awkward 'man-handling' required in order to slide the back/head support behind the person, particularly if they are sitting in an armchair makes for a rough, uncomfortable experience for them. 

3 Because of the way my mother's home's hoist is designed, although the back and head of the person is well supported, their lower back and bottom are left drooping down, while their knees are pulled up and apart, with their lower legs hanging down so that the body is in a kind of suspended foetal position. This is a debilitating, as well as undignified position for anyone.

4 To be pulled up by the hoist with the motor whirring in this way was confusing and unnerving for a person with dementia such as my mother, even though the staff are always kindly and do their best to be thoughtful.

5 It looks like a piece of hospital equipment, because really, that's what it is. 

Equipment to help the oldest in society is really disgracefully ugly and hostile and often uncomfortable. Even the innocent and ever-helpful Zimmer frame looks out of place in a person's living accommodation.  When my mother could still walk with one of these, I decorated it for her  in a pathetic effort to make it less 'unsympathetic', with ribbons and little furry RSPB bird toys which could be made to tweet, hanging from the cross bar. What the Zimmer frame design needs, is a complete overhaul.

As standard issue for elderly people, the Zimmer has about as much charm as the old National Health spectacles, which have disappeared thanks to the work of fashion accessory designers. Why shouldn't all equipment required for older people be treated in the same way? If only manufacturers and designers could be persuaded to turn their attention to products used by the oldest old in society, my age group might be able to get ourselves about in the future with ergonomically and visually pleasing, recognised designers' walking frames to go with our Ray-ban, Diesel or Dolce & Gabbana shades.

Some Isabel Allende wisdom

Perhaps old age is a new beginning, maybe we can return to the magic tune of infancy, to that time before linear thought and prejudices when we perceived the universe with the exalted sense of the mad and were free to believe the unbelievable and to explore worlds that later, in the age of reason, vanished. I have very little to lose now, nothing to defend; could this be freedom at last? 

Isabel Allende

(Thanks to www.persephonearbour.com)

Don't know ZIP? That'll be your PKMzeta then.

 

The New York Times reported yesterday that neuroscience researchers in Brooklyn have recently been trying out a new drug called ZIP –  which, when delivered to areas of the brain critical for holding specific types of memory, like emotional associations, spatial knowledge or motor skills, can actually erase memories by blocking the activity of PKMzeta – a substance that the brain apparently needs to retain much of its learned information. Critically, the report says that now it has been recognised, if enhanced, the substance could help ward off dementias and other memory problems.

So far, the research has only been carried out on animals, but with more than 100 million people worldwide predicted to have Alzheimer's disease or other dementias by 2050 as well as the far greater numbers who will struggle with age-related memory decline, the scientists' biggest target is to try to get cells to make more PKMzeta.

Unsurprisingly, many questions remain. For example, it is still not known if PKMzeta can really link a network of neurons for a lifetime, nor how, and they don't yet know how it works with the many other substances in the brain that appear to be important in creating a memory. As the article points out, no one expects there to be one, single memory molecule – the system is just not that simple. Many molecules will be found in different kinds of memories all along the process of learning, storage and retrieval. 

Yet even at these early stages, scientists are upbeat about altering our understanding of human nature. Without doubt, they would be making a massive contribution to the ageing population if they can find some way to reverse the memory-degrading effects of dementia.

Image: Photographersdirect.com

Bread and butter pudding crossing the generations

I'm not sure why, but if there's one dish that I will always associate with my mother, it is bread and butter pudding. She cooked lots a lovely things but good old-fashioned bread and butter pudding was a staple of our life at home. The joy of the crispy, bubbling, golden treat with its delicate vanillary sweetness that she brought to the family lunch table, will be one of my reminiscences of her motherliness for all time. 

Given how easy it is, I'm not sure why it's taken me over three decades of cooking to dare to make it myself. I've modernised it slightly, using Panettone instead of baker's bread, but essentially it is the same as it ever was. 

So on this day when we honour our mothers, here's a great recipe. Enjoy!

Ingredients

1 pint of milk

1 pint of double cream

1 vanilla pod

4 medium eggs

170 grams caster sugar

40 g raisins

Freshly grated nutmeg

Panettone cut into thick slices and buttered

1 orange, zested

1 spoon of icing sugar for dusting

Directions

Pre-heat the oven to 170 degrees.

Generously butter a baking dish and scatter half the raisins over it.

Bring the milk and cream just to the boil in a saucepan.

Cut the vanilla pod in half longways and scrape out the seeds.

Add this and the orange zest to the pan.

Whisk the eggs and caster sugar until pale. 

Remove the vanilla from the milk and cream and stir it into the egg.

Dip each slice of buttered Panettone into the custard and pile into the baking dish.

Pour the remaining custard over the bread, finishing with the other half of the raisins 

press the bread down lightly so that it soaks up more of the custard and sprinkle with 

the icing sugar and grated nutmeg.

Bake for about 40 minutes until it has a slight crust on the top but is still a bit wobbly inside.

Bring to the table and gobble up – with, for added indulgence, a dollop or two of creme fraiche. 

Image: BBC