Dementia robbed my Margaret of her inhibitions… I can’t bear her to lose dignity too
ACTOR Timothy West’s tender care of dementia-stricken wife Prunella Scales, as shown on their TV canal tours, and the plight of fellow sufferer Barbara Windsor, have touched the hearts of millions.
Now Timothy faces selling the family home to pay for Prunella’s care.
With annual care bills now reaching up to £100,000, there have been calls for the NHS to fund all dementia treatment.
Here The Sun’s gardening guru Peter Seabrook, whose wife Margaret also has the disease, tells of her journey, and calls for community support to ease the burden on sufferers and carers.
FIFTY-NINE years ago, in front of the altar, my wife Margaret and I promised to look after one another “in sickness and in health”.
And so for the last ten years, while she has suffered from Alzheimer’s and vascular dementia, I have done so.
We were together in our own home for as long as possible, then two years ago she started having a week in respite care every month.
And for the past 14 months Margaret has been in permanent residential care.
I visit at evening meal time to help with feeding and again to be present when she is tucked up in bed.
We are taught from our time at school, through to apprenticeship, college, adult learning and on-the-job training, but no one teaches you how to cope with old age.
Boy, do you have to learn quick — and not just how to care for someone with dementia. All the previously shared roles have to be taken on by the healthy partner while also looking after the patient.
DIFFICULT SITUATIONS
The one thing you need is a sense of humour. What can you do but laugh at difficult situations, like when the hot tap is left running with the plug in the sink?
It is no good getting cross when the same question is asked every few minutes throughout the day.
All inhibitions go with loss of memory, so the young man at the Co-op till is told how attractive he is, much to his embarrassment. And the lady in the aisle is approached in conversation like a long-lost friend.
What I have learned over those ten years is every individual is just that — an individual. No two dementia sufferers act the same.
There are some common traits, such as frustration at sundown between 6pm to 8pm, and music enjoyed in earlier years soothes frayed nerves.
Going walkabout can be a great concern. If the door is left unlocked the dementia sufferer can be gone in a flash, even in night attire, on cold nights. A satellite tracking device can be a godsend, if the patient will always wear it.
It can be hard to cope — which is why many dementia patients eventually need residential care.
Moving from a married lifetime home into care is another steep learning curve. The staff doing the caring are critical.
They need to really care — many do, and are angels.
They are not paid enough, and why do they work 12-hour shifts in these most demanding of circumstances?
SHUFFLE PAPER
It looks to me as if the nine-to-five managers are paid too much to shuffle endless paper and you never see them walking the corridors and helping with caring on a Saturday evening.
Then there is the Care Quality Commission (CQC), the independent regulator of all health and social care services, with a budget in excess of £150million.
That is a laugh. They certainly Care about protecting their own backs.
And Quality is the wrong word to describe my experience of how they send two or three people to do assessments. Their endless reports read as if they have been cut and pasted.
One experienced assessor should be able to tell in minutes that a dementia sufferer is unable to get up and get dressed, feed themselves and keep clean. Surely a one-page report should be enough.
Qualified people are needed to ensure that dementia sufferers are in a friendly, stimulating and clean environment, well cared for, with bottoms wiped regularly — not wasting time ticking boxes and writing reports no one reads and repeatedly cancelling appointments.
We also have “Safeguarding”, a quite separate entity, to protect health, wellbeing and human rights. I have been instructed by “Safeguarding” people not to lift Margaret, and that any movement has to be done by two residential home staff using an electronic hoist.
Fortunately, I am quite fit and throughout my working life have been able to lift quite heavy weights.
That came in useful in recent years at home, when I was able to lift Margaret out of the bath and up off the floor when she collapsed. “Safeguarding” seem quite happy to overlook this situation.
Now Margaret is in a residential home I have to stand and watch her being cranked up like a sack of potatoes, on occasions with her backside out of her trousers, in public view.
Compare this with my arms around her in an affectionate cuddle, lifting her from chair to wheelchair to toilet and back, completely relaxed. So how to pay for all this care? If someone has cancer, their treatment comes free on the NHS, but if you are one of the UK’s 850,000 dementia sufferers, it does not.
People argue it is not fair and I have some sympathy with that point of view.
HELP OUR CARERS
But the difficulty is financing the one-to-one care 24/7 that is needed for those with advanced dementia.
Sufferers and their families last year paid £11BILLION towards care costs. Even if the already financially stretched NHS did take on this enormous burden, where would they manage to recruit all the carers?
Is it not up to each and every able-bodied person to make some provision for their care in old age?
There needs to be community support — family, relatives and friends can be of great help, visiting sufferers in their own houses and residential homes.
The healthy need to give time to those less fortunate and families should not expect to offload relatives into residential care and leave them to the State to look after, which, with the best will in the world, today it cannot.
Most readers will know of a family member or friend suffering with dementia, in some cases the live-in carer pushed to breaking point. A representative from Social Services will come and make assessments, only in my experience to leave the carer completely unsupported.
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Giving these live-in carers a break, even for a few hours, can be an unbelievable relief and helping to feed someone in a residential home will give the professional staff more time to be with the most demanding residents.
Please, caring Sun readers, help where you can and give a little time.
Meanwhile can the Care Quality Commission and Safeguarding get off the backs of carers who are doing their best for the people they love?
What is dementia and are there different types?
Dementia is a general term used to describe the deterioration of a person's mental ability that is severe enough to interfere with their daily life.
It is known for the problems it causes with thinking, reasoning and memory - as these are the areas in the brain that become damaged.
There are two main groups dementia can be split into:
- Cortical, which causes severe memory loss like that seen in Alzheimer's,
- Sub-cortical, which affects thinking speed and activity as seen with Parkinson's disease.
Vascular dementia and Alzheimer's are two of the most common forms and they both cause problems with memory.
Both are rare in those under 65 years old.
Other common forms of dementia are Frontotemporal dementia, mostly diagnosed in those under 65 years old, and dementia with Lewy bodies, where nerve damage gradually gets worse over time causing slowed movement.
Scientists recently discovered a new form of dementia that has often been mistaken for Alzheimer's.
They say it is part of the reason why finding a cure to dementia has failed so far.
To find out more about dementia, and discover where carers can access support, visit the .
- HAVE YOU BEEN AFFECTED BY DEMENTIA? Tell us your experiences at [email protected]