RSS

Tag Archives: elderly

A NETWORK OF OLDIES IN EALING

Are you over the age of 50?

 

Would you like to develop or join a social network for oldies?

Such a network could provide support, break isolation , organise activities and more…………

come to a first get together on :-

             Monday 20th February  – 10am until 5pm

At

                       Ealing Quakers Meeting House

                            17, Woodville Road,W5  2SE   

image

                                                 refreshments available 

              Drop in anytime stay as long as like, come with ideas to share

For more information contact Andrée

hanwelltortoise@gmail.com 

Tel:  02085673446

                                 Everyone Welcome

Welcome phrase in different languages. Word clouds concept.

Advertisements
 

Tags: , , , , , , ,

Are you or do you know someone who is finding it difficult to get to the GP surgery?

image

Healthwatch Ealing is the new independent consumer champion created to gather and represent the views of the public In Ealing. Healthwatch will play a role at national, regional and local level and will make sure that the views of the public and people who use services are taken into account.

Address: Healthwatch Ealing, Lido Centre 63 Mattock Lane West Ealing
London W13 9LA United Kingdom

Web: http://www.healthwatchealing.co.uk

There are many elderly or disabled people who find it difficult to get to their GP’s surgery for routine visits as there is no public transport, taxis are expensive and they don’t have friends or family available to take them. By attending the surgery they can see the GP who will have easy access to their medical records, be able to see other health care professionals as well as the fact that appropriate examinations  are often much easier to perform and a chaperone is usually available. For some this may be a welcome social outing!

To address this the Ealing Clinical Commissioning Group are providing the  ECT with funding for the following pilot project.

PlusBus for Health

What is PlusBus for Health and can I use it?

PlusBus for Health is a new trial service offered by ECT to transport people to and from GP surgeries. The service aims to reduce the number of GP house calls and no-shows at surgeries, and simultaneously improve the well-being of patients by providing the opportunity to leave their homes and increase social contact.

The service is not currently available to everyone. GP surgeries are referring people who are eligible to ECT.

This is a shared service which will run to provide FREE transport for as many people as possible.

To find out more, please speak to your GP to see if they are taking part in the trial, or alternatively call 020 8813 3214 or email plusbushealth@ectcharity.co.uk.

NB we are participating in this trial

 
Leave a comment

Posted by on February 22, 2015 in Training and Advice

 

Tags: , , , , , ,

Euthanasia – quiet and easy death

Euthanasia – quiet and easy death

image

As many people now know I am partially retired, which for me means I spend half time in London as a GP and the second half enjoying life in the country and following various pursuits.
This why you may find blogs referring to time out of London and in the countryside !!
image
/> Yesterday, I was busy gardening surrounded by trees in full leaf,flowers bursting into bloom and my broad beans awaiting harvest. The scent of freshly mown grass and the aroma of surrounding herbs with the steady hum drum sound of a nearby tractor confirmed the arrival of summer. The weather was perfect, the sky a glorious blue, the sun blazing brilliantly, the Golden Oriole singing gracefully as he leapt from tree to tree accompanied by two turtle doves squawking noisily whilst they chased each other playfully. This was amidst a chorus of feathered creatures chatting as the distant sound of the Cuckoo was beginning to change it’s tune before flying south. I felt that I was the nearest I could ever be to Paradise.!
Then the phone rang asking if I could come to lunch, which initially I thought was a good idea until my dear friend said ‘by the way we are having an informal discussion on ‘Euthanasia’ and wondered if you could come along to give a more informed opinion.
When I was working full-time there was very little time to think deeply about such issues and now I was amongst people who felt this is something important to discuss as they were all in retirement and needing to think about end of life. What a day to choose!
” It will only be for about an hour and it will be good to see you……..” I soon found myself driving through beautiful countryside past barley fields swaying in the gentle breeze as if dancing to a Strauss Viennese Waltz and the unmistakable russet coloured leaves of the walnut trees standing alone or in a grove bearing perhaps the healthiest nut in the World. The road followed several hamlets of stone terracotta roofed houses and wooded glades and finally I arrived at my destination .
image
In the quiet dining room about a dozen people gathered to discuss this topic – all post retirement and having experienced death an suffering of a near relative(s) and several had emailed their views to be shared.
It was also announced on the day of this discussion that “The French Government are in the throes of tabling a draft legislation on euthanasia or as they want to refer it as ‘assisted death’. ” so a very topical subject.
An older gentleman, a retired naval officer opened the discussion by defining Euthanasia as a deliberate intervention specifically intended to end a person’s life for the purpose of relieving distress.
And went on to elaborate by referring to a reputable Ethics book (1)
Euthanasia can be classified in different ways, including:
active euthanasia – where a person deliberately intervenes to end someone’s life, for example, by injecting them with sedatives
passive euthanasia – where a person causes death by withholding or withdrawing treatment that is necessary to maintain life, such as withholding antibiotics in someone with pneumonia
Euthanasia can also be classified as:
voluntary euthanasia – where a person makes a conscious decision to die and asks for help to do this
non-voluntary euthanasia – where a person is unable to give their consent (for example, because they are in a coma or are severely brain damaged) and another person takes the decision on their behalf, often because the ill person previously expressed a wish for their life to be ended in such circumstances
involuntary euthanasia – where a person is killed against their expressed wishes
Depending on the circumstances, voluntary and non-voluntary euthanasia could be regarded as either voluntary manslaughter (where someone kills another person but circumstances can partly justify their actions) or murder.
Involuntary euthanasia is almost always regarded as murder.
He reminded us that both euthanasia and assisted suicide are illegal under English and French law.
Depending on the circumstances, euthanasia is regarded as either manslaughter or murder and is punishable by law with a maximum penalty of up to life imprisonment.
Assisted suicide is illegal under the terms of the Suicide Act (1961) and is punishable by up to 14 years’ imprisonment. Attempting to commit suicide is not a criminal act in itself.
However, Active euthanasia is currently legal in Belgium, Holland and Luxembourg. Under the laws in these countries, a person’s life may be deliberately ended by their doctor or other healthcare professional.
The person is usually given an overdose of muscle relaxants or sedatives. This causes a coma and then death.
However, euthanasia is only legal:
*if that person has made an active and voluntary request to end their life, and
*it is thought they have sufficient mental capacity to make an informed decision regarding their care, and
*it is agreed that the person is suffering unbearably and there is no prospect for an improvement in their condition
*Capacity is the ability to use and understand information to make a decision.

In some countries the law is less clear, and some forms of assisted suicide and passive euthanasia are legal but active euthanasia is illegal.
For example, some types of assisted suicide and passive euthanasia are legal in Switzerland, Germany, Mexico and the American state of Oregon.

During the discussion aswell as reading on the subject it appears that there is widespread revulsion at the medicalisation of death and there is a growing fear of long,lingering death . Attempts are made to keep people with irreparable bodies alive by ‘high-tech’ machinery and radical medical treatment when there is no reasonable expectation of returning to normal life for what remains of the ‘person’
The Times (24 January 2007) reported that, according to the 2007 British Social Attitudes survey, 80% of the public said they wanted the law changed to give terminally ill patients the right to die with a doctor’s help.
However, this is where the disease is incurable and the person concerned is in coma or on a life support machine or there is significant intractable pain and suffering but at the other end of the spectrum where someone is not ill or close to death but -for example maybe extreme lonely and no longer enjoys life the pro-euthanasia is 12%.
Nowadays, experience of death has changed and suffering is not considered part of human life and expectations are such that there is a demand for a swift and painless, tidily controlled death. Many people desire to keep control and dread losing it. Although despite the Hospice movement and greater expertise in dealing with palliative care there are still those who resist a move towards dependency and loss of self-determination.
All major religions spring from a deep sense of the sanctity of life. It is believed that human life is a very great gift from God ,to be revered ,cherished,and protected from beginning to end .To destroy life is to dishonour the Giver of Life.
But conversely pro euthanasia groups feel that people have an explicit right to die.
A separate right to die is not necessary, because our other human rights imply the right to die.
Death is a private matter and if there is no harm to others, the state and other people have no right to interfere (a libertarian argument)
Practical arguments It is possible to regulate euthanasia-
Allowing people to die may free up scarce health resources (this is a possible argument, but no authority has seriously proposed it)
Euthanasia happens anyway (a utilitarian or consequentialist argument)
Philosophical arguments
Euthanasia satisfies the criterion that moral rules must be universal
Regulating euthanasia
Those in favour of euthanasia think that there is no reason why euthanasia can’t be controlled by proper regulation, but they acknowledge that some problems will remain.
For example, it will be difficult to deal with people who want to implement euthanasia for selfish reasons or pressurise vulnerable patients into dying.
This is little different from the position with any crime. The law prohibits theft, but that doesn’t stop bad people stealing things.
The group were not so concerned about whether they agreed with euthanasia it was more their concerns about how it was done and the act is open to abuse.
Unfortunately, the murder trial of Dr Harold Shipman,who by all accounts was a charming doctor has drawn attention to the enormity of trust which patients have held in their doctors for thousands of years.
As doctors we all take the Hippocratic Oath (2) albeit usually the modern version and this is quite clear what direction we must follow and often people are unaware of our formal commitment.
A 12th Century Byzantine Manuscript of the Oath

    " I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them " Hippocratic Oath


” I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them “
Hippocratic Oath

Hippocratic Oath-classic version-
I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
-modern version
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
A guide to the Hippocratic Oath
By Dr Daniel Sokol Medical ethicist
http://news.bbc.co.uk/1/hi/7654432.stm

This Oath sworn when we pass the threshold into the medical profession covers every aspect of our work and is a constant challenge as society makes demands.
I have also been aware of of times when patients have taken to hospital , languished and died on trolleys in corridors. We have all been horrified by the avoidable deaths that have been in the news especially those reported at the Mid – Staffordshire NHS trust.
This inevitably stirs up a desire to have control over end of life to avoid neglect.
The NHS is moving towards more accountability and GP’s are piloting ways of actively working with patients and their families by advanced planning to have wishes and actions on record so that there is some broad outline of how end of life is to be managed.
The concerns of the Liverpool Care Pathway was raised I feel that this it would be useful to explain what this is and how it came about:-

The Liverpool Care Pathway (LCP)
LCP, developed by the RoyalLiver­pool University Hospital and The Marie Curie Hospice in Liverpool, grew out of the hospice movement in the 1990s.
The aim was to spread good, skilled care in the last few days and hours of a patient’s life into other healthcare settings, such as hospitals and care homes, where there was evidence to suggest end-of-life care was poor.
image

It had been noted that as a patient was noted to be terminally ill and active intervention was scaled down the end of life care was left to junior doctors and nursing assistants. I clearly recall this when I was a junior doctor and I remember how some of these dying patients took me underwing to tell me what it was like to be dying and what they wanted and I shall be ever grateful to them but this is not an appropriate way to learn: we had to ‘learn on the hoof’
It was often found that symptoms were inadequately controlled, oral hygiene often neglected, thirst remained unquenched and psychosocial needs were ignored.
Looking after a dying patient is challenging. To do it well involves confronting human mortality and accepting death as a normal part of life and therefore is an important part of medical care (which cannot always be curative).
Complicated factors are at play, including the existential worries many of us have about death, a sense of failure (and, increasingly, fears of litigation for not doing enough), and the unhappiness we anticipate among those left behind.
The benefits of the LCP soon became apparent because it offered a simple framework tool that even the least experienced could follow to institute consistent care.
In the hectic, understaffed modern medical world, the LCP ensures the patient is never left for too long. Continuing assessments in four domains (physical, psychological, social and
spiritual) every two hours mean symptoms are regularly considered.
The LCP also provides a scheme for drugs to manage problems such as pain or terminal agitation. Unnecessary drugs can be stopped, but there is no hard and fast rule – the LCP is best used in an advisory, rather than a didactic, way and any treatments deemed
of value can continue to be given. The focus is on comfort and symptom control.

The LCP was clear from the start that it is not an active step to end life.

Although people die after an average of 29 hours on the pathway, the door is never closed to further intervention, and as a result of regular assessment, some patients are taken off the LCP because they improve. (The small number of patients I have seen taken off the LCP have all gone on to die within a few days.)

Hence, in practise a patient is put on the LCP if it is deemed that they seem to have only 48hours to live but if they survive they are taken off it and observed and may be put back on if appropriate but this is all done under close supervision with advise and input from senior staff. It appears that the problem arises when communication fails and the professionals consider a patient having 48hrs to live without a concluding test just simply by experience and the attending relatives don’t understand the patient is dying. Hence, it is very important to communicate with relatives and address their views and concerns. In my experience I have had to hold many a family conference at all times of day and night and it is only when all grievances ,worries and fears are addressed that the end of life can be effectively managed.

Another, big anxiety that people have was that euthanasia would be open to abuse especially from relatives and it is therefore not surprising that The Times (24 January 2007) reported that, according to the 2007 British Social Attitudes survey, 45% supported giving patients with non-terminal illnesses the option of euthanasia. “A majority” was opposed to relatives being involved in a patient’s death.

Lack of oral intake is one of the things that particularly disturbs families and this was raised in discussion. The need for fluid is such a basic human drive that even medical staff tend to feel troubled when someone has not taken fluid for days, and better guidance is needed regarding assisted hydration and the use of other interventions.
Research confirms my own experience that at the end of life, people may survive for many days without fluids and without significant discomfort, but this fact is little appreciated.
A survey of patients in Oregon hospice programmes found that as many as 15% of those who chose to discontinue food and fluids survived for more than two weeks, but reported high degree of peace and comfort..
I explained to the group who were not aware of how many doctors work with a palliative care team who holistically look at the circumstances and management of the end of life and that this is not just for cancer but can be any end of life illness including end-stage dementia, heart,kidney, liver failure end -stage neurological conditions including strokes, multiple sclerosis and motor neurone disease and many other diseases at any age. This challenging work is for the most part done by very dedicated health professionals based at local Hospices and who work with GP’s. I have witnessed many deaths which have been ‘quiet and peaceful’ but not involving deliberate actions. All GP’s in England have a Palliative Care register and we are contracted to discuss these patients holistically every 3 months and more often if appropriate .
At present in Britain, the Hospice approach, with its sensitivity to the many dimensions of human distress is gaining ground in all areas of health care so that euthanasia is not gaining further momentum. (3)Cicely Saunders, by inspiring world-wide enthusiasm for hospice philosophy ,has done more than any single individual to provide a positive alternative to euthanasia.
image
image
http://www.meadowhousehospice.org.uk/faq.php
The group generally felt that what they wanted was a quiet and peaceful death in the lines of palliative care and if possible to be part of the process but were not in agreement to support active/deliberate terminal intervention. Even though it seemed not the right day to discuss the end of life perhaps someone in that group felt better informed and less fearful about dying.

image

References
(1)Grove Ethics Series ‘Euthanasia’ – a Good Death ? by Margaret Whipp (consultant in Palliative Medicinse and Director of hospice ServicesHartlepool & East Durham)
(2)http://www.pbs.org/wgbh/nova/body/hippocratic-oath-today.html
(3)http://en.wikipedia.org/wiki/Cicely_Saunders

Posted by Dr Bayer

 
 

Tags: , , , , , , ,

Falls Awareness

image

Falls Awareness Week, 2013

Theme; Healthy Feet 

This week we were sitting in the sun having a nice cup of coffee and the phone rang. My husband answered and it was Burton Alan ( named after his birthplace to indicate which Alan) someone he had come across at the Builder’s  Merchant  when ordering gravel several years ago and they had kept in touch since.  He is now 74 years of age and a few years earlier he had bought some land and single- handedly started  building his own four bedroomed detached house ( having constructed a Wooden chalet to live in whilst it was being built). Considering he had been a Chemical Engineer specialising in water purification  this was no mean feat. He had made great progress,  the roof was completed and he was working on the  interior finishes (nearly finished in his mind but for me there seemed a lot to do). 
Last month one evening he had gone Line Dancing  in the village hall. On leaving, the outer door of the Hall  had slammed back on him and he had fallen. He was helped up, got to the car and drove home. After a restless night he felt he should go to the local hospital as the leg was very painful and paracetamol was not working even with a tot of whiskey! When he got there he had fractured his hip and was admitted to have surgery to have the femur pinned.
 This was why he had phoned as he was now home from hospital and the convalescent clinic after 3 weeks and needed a little job doing. When we had visited him soon after surgery he was not yet walking  but was sitting up in bed drawing his electrical diagrams so we weren’t surprised he was backing ‘home’ in the chalet as he was anxious to get back to his  almost finished house. Now Alan is not the most organised and tidiest of people and when we arrived the land where  the house and chalet stood was a building site and by no means in any order pipes, equipment,plastic buckets etc strewn everywhere and to get to the chalet it was through this detritus and walking through long grass concealing even more hazards. His car was parked at the end of the path for him to use to go to the shop in the next village. As we walked along we cleared visible objects to one side and found him sitting on the veranda surrounded by paperwork, wires,tools various bits of furniture including a new sofa he had recently bought from someone at the Line Dancing group!! We sat down and over a cup of tea tried to talk about the practicalities of staying in this situation but as if he didn’t hear  he merely veered the subject back to how he could finish the house and was working out the amount of voltage the EDF ( electricity board) needed to supply to the house, taking into account the length of the cable and resistance in Ohms it would produce. ( a test on our knowledge of basic physics) The job he wanted my husband to do was to fill in a hole over a pipe in the path through the long grass leading to the house. After  we wandered around looking for a shovel, pick axe to loosen the hardened aggregate  and empty the wheelbarrow full of various tools my husband went off under his supervision to fill in the hole!!!
During this time I tried to discuss other options and discuss falls prevention, probably best managed by staying with relatives. He said the physiotherapist had visited earlier and  he was puzzled as to  why the hospital physiotherapist had recommended walking as much as possible but this domiciliary physiotherapist had recommended doing static exercises and very little walking. No mention of falls assessment !  We did our best to make sensible suggestions but his parting words were ‘thank you for coming over to do that I must take you out for a meal sometime and I’ll be in touch.
 
I wrote this as an extreme example of how difficult it is to make people aware of hazards not only for themselves but for those around them. I remember when I used to take up the rugs in my mothers house knowing full well as soon as I turned my back she would put them down. Do all parents teach their children to put their toys away. A blind friend of mine was obsessional about counting toys in and out of the toy box and also told me her worst nightmare was walking down a street with black bags on the footpath as no way could she see them even the outline ( bear that in mind when you put your bags out)
The irony of this tale is that Line Dancing is a good way of improving balance and strengthening leg muscles! 
 
Hence, falls awareness is for everyone whatever the age and every parent should teach their children this from the word go. I am sure everyone has a tale to tell of a fall that should not have happened.  Do you put salt on the path outside your home  in icy weather? Do you put something to one side or away if it is in the way even if it is not your property or do you just step over it?Do you check your elderly or disabled relatives home for hazards and tactfully remove them? Many people especially in West London have low VitaminD and a high percentage of elderly people  have osteoporosis both conditions indicate a greater risk of fracture and delayed healing. 
Sometimes it is difficult to change someone’s ways but it is worth a try, it may simply be replacing a light bulb, supplying a cordless phone, fitting grab rails in the bathroom  or taking away a mat or tidying an electric cable. 
 
Everyone can be at risk of having a fall, but older adults are more vulnerable than others. This is mainly due to long-term health conditions that can increase the chances of a fall.
Other groups who are particularly at risk are young children and people whose job involves working at heights.
Falls are a common but often overlooked source of injury and sometimes death. In 2009 in England and Wales, there were 3,593 deaths as a result of falls.
Around 30% of adults who are over 65 and living at home will experience at least one fall a year. This rises to 50% of adults over 80 who are either at home or in residential care.
Most falls do not result in serious injury. However, 20% of older adults will require medical attention for a fall and 5% will experience a serious injury, such as a broken bone.
Falls can also have an adverse psychological impact on elderly people. For example, after having a fall a person can lose confidence, become withdrawn and may feel as if they have lost their independence.
 
Falls and accidents seldom “just happen.” But there are many simple things that older people can do to prevent falls, and their potentially devastating consequences aswell as
taking  care of your health by exercising and   making sure that you get enough calcium and vitamin D.
 
How Can I Prevent Falling?
At any age, people can make changes to lower their risk of falling. 
 
Some tips to help prevent falls outdoors are:
Use a walking stick
Wear rubber-soled shoes so you don’t slip
Walk on grass when pavements are uneven or slippery
Put salt or kitty litter on icy paths
 
Some ways to help prevent falls indoors are:
Keep rooms free of clutter, especially on floors
Wear low-heeled shoes
Do not walk in socks, stockings, or slippers
Be sure rugs have skid-proof backs or are tacked to the floor
Be sure stairs are well lit and have rails on both sides
Put grab bars on bathroom walls near bath, shower, and toilet
Use a nonskid bath mat in the shower or bath
Keep a torch  next to your bed
Use a sturdy stepstool with a handrail and wide steps
Add more lights in rooms
Buy a cordless phone so that you don’t have to rush to the phone when it rings and so that you can call for help if you fall.
 
You can also do exercises to improve your balance. While holding the back of a chair, sink, or counter:
Stand on one leg at a time for a minute and then slowly increase the time. Try to balance with your eyes closed or without holding on.
Stand on your toes for a count of 10, and then rock back on your heels for a count of 10.
Make a big circle to the left with your hips, and then to the right. Do not move your shoulders or feet. Repeat five times.
 
 Ealing has been proactive and has a falls clinic and for many years we have therapists who visit the home to carry out a falls assessment and often it is easier for them 
to give advise rather than relatives. If you feel this would be helpful attend the events held in Ealing next week or contact your surgery I you have a concern about yourself or someone you know . Also look out for events and help from ageuk  which supports these events and they originally set up the falls assessment team.?
 
 
 
 
 
 
ImageImage
 
posted by Dr Bayer

 

 

 

More information
http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/Fracture/prevent_falls_ff.asp
http://www.nhs.uk/Conditions/Falls/Pages/Introduction.aspx

 
 

Tags: , , , ,

DEMENTIA AWARENESS WEEK (19-25th May)h

This was largely organised by The Alzheimer Society to help make people aware of this condition which affects at least 750,000 and many people remain undiagnosed and the incidence is predicted to rise to 1 million by. 2021.

What is dementia?

Dementia

The term ‘dementia’ is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. Symptoms of dementia include loss of memory, confusion and problems with speech and understanding.
There are some very good videos directed from their website to you tube that explain this condition
http://www.alzheimers.org.uk/talkdementia

Also, for further information
http://www.patient.co.uk

http://www.nhs.uk
http//www.dementiaweb.org.uk/news/
24hr helpline. 0845 1204048.

Patients with Dementia could benefit from new GP contracts
This practise has signed up for both doctors to carry out :-
A proactive approach to the timely assessment of patients who may be at risk of dementia.
We will screen for Dementia in a sensitive manner as part of an elderly / medical check or on specific request and carry out regular medical checks.

What do you look out for?

If you’re becoming increasingly forgetful, particularly if you’re over the age of 65, it may be a good idea to talk to your GP about the early signs of dementia.

As you get older, you may find that memory loss becomes a problem.
It’s normal for your memory to be affected by age, stress, tiredness, or certain illnesses and medications.

This can be annoying if it happens occasionally, but if it’s affecting your daily life or is worrying you or someone this may need further assessment .

Please don’t hesitate to see one of us in surgery so that we can assess you and get the right help in place as soon as possible or if you are worried about a relative bring them to see us.
Sometimes it is simply a wake up call to get your affairs in order and fulfill your ambitions and even if a diagnosis is not made doing this a positive move to face the rest your life.

Ealing has a particularly active branch of Alzheimer’s concern. They are very supportive to carers and their magazine is always available at the surgery.

image

http//www.dementiaconcern.co.uk/Ealing

We are proposing having a talk at the surgery from a Dementia Keyworker
LOOK OUT for this on the web page.

My experience of my mother’s  suffering with dementia, which in the early days she told me on many occasions that I should share the experience to help others coming after her.

image

Many of us will know someone or have a close relative with Dementia and know the heartache that it brings.
You cannot take the person out of the disease. “.

This means that as confused as a person may seem those who know this person will still recognise the person underneath and feel a connection.
My mother recently died at the age of 94yrs with Lewy Body Dementia following a slow decline over 6years. My sister & I found that talking to her as our mother telling her what was going on kept her as part of the family to the end and even if there was no recognition there was some connection. She still worried about us – were we working too hard, how were we getting home etc. she still had the same food preferences and insisted on drinking her tea out of a bone china cup and saucer.

She must have been aware she was deteriorating as she had been proactive in getting her affairs in order and had even been looking at sheltered accommodation. The diagnosis at that time was slow and confused and often doctors and nurses thought she was being lazy or difficult. She had frequent falls and several admissions and when given certain medication especially codeine type painkillers or if she had an infection she became more confused and had visual  hallucinations. On one occasion I visited her and she thought the place was flooded and she was stranded on her bed unable to even get to the toilet and pleased to see me to come to the rescue. I understood that this was not my mother and I had to explain to medical staff who assumed that was her character and thought she had a mental illness. It was very frustrating as the proper diagnosis evolved very slowly . I was later to find out that many doctors were not familiar with type of dementia characterised by Parkinsonism, visual hallucinations made worse with opiates and cognitive impairment. Also, patients with Lewy Body dementia have episodes of unconsciousness – unrousable sometimes lasting 1 – 2 days. When they emerge they are often better and more lucid and rational so that to inexperienced staff it may appear that they are ‘playing games’ . With one daughter a head teacher and another a GP medical staff unfamiliar with this condition gave us a hard time on many occasions during the admissions for falls or when she was found unconscious. Eventually, we were able to have documentation which was shown to staff on admission or when having treatment and care in the community.

We made a life album with photographs of her whole life so that those caring for her had some idea of the life she lived and who had been important to her in her life. Often she referred to relatives and friends who had died many years ago so that it gave good talking topics when any family visited.
She had been living alone but when she was diagnosed she had lucid moments when we were able to discuss her future with her and reluctantly she was admitted to a specialist Care Home.
We were able to furnish it with her own furniture including the bureau contains photos and items she had saved over many years and a corner cupboard of trinkets that held many memories of holidays abroad and gifts from friends and family.
She took her own clothes , although I did find her trying to swap some with a neighbouring resident or offering her 1/6d (old money) for a dress of hers.
Moreover, she continued to carry her handbag and we took her to buy new clothes as she had always been very particular the way she dressed and in her last few months we bought her some new clothes and cheap jewellery and it was a joy to see her face. She continued to have her hair ‘set’ weekly until the  last week of her life.
We bought her make up and she loved it if any of the granddaughters put on her makeup or manicured her nails and wouldn’t change from ‘burnt orange’ lipstick. The grandchildren took their boyfriends/ girlfriends to meet her and she gave her approval often flirting with the boys and giving the advise she had given me as a teenager! She impressed them by demonstrating how she could ‘down a shot’ with a small cup of lactulose ( one way of getting her to take her medicine when she refused) She developed fears she was being poisoned (a common feeling in this disease) so we bought M&S sandwiches as she had implicit faith in their food -it worked!
She had always loved the garden and when the carers wouldn’t let her out she claimed they had put hosepipes on to pretend there was rain. Luckily I arrived in time and she was distracted and proceeded to tell me my brother-in-law had been put in prison for stealing a lot of money – £77.33 but I was able at that stage to tell her that she was confused and this was untrue and it was her illness and she gave me some insight as to how distressing things could be. That is why it was so important to visit to let her and the carers know what was fact rather than confusion.

Understandably, some people find it difficult to visit as what they see is too painful and as doctors usually we respect that ( you can’t take the person out of the illness ) and it can be difficult to come to terms with this condition. Also, if there was formally a strained relationship it is unlikely to change radically. I was fortunate that we had maintained a close, trusting relationship and was adamant that he should be cared for in a residential home situated near either myself or sister. Sometimes carers and those around a relative can offer more care and love than the relatives for all sorts of reasons and we as doctors try not to be too judgemental as we are often aware of those reasons.

When a well meaning carer sent me this video. It seemed hard:-

As my mother deteriorated and became less mobile we bought her an all singing ,dancing recliner chair so that she could be up in the day , wheeled to the garden she loved and sleep comfortably and eat her meals sitting up.

She was our mum who loved life, enjoyed a party and annoyed us in the same way. Latterly she was unable to walk so we used a wheelchair to take her out, the grandsons often wheeled her and she loved them doing wheelies and the last photos are with the family she loved laughing, singing but gradually these occasions became less and less she slept more until one day she went to bed said goodnight with the pictures of her two new great grandsons by her side and passed away peacefully. We played her favourite music and put on her favourite perfume and with hair ‘set’ and make up on she died in dignity.

image  More information concerning Lewy body Dementia
http://www.lbda.org/content/intro-to-lbd.

We had many times of anguish sometimes feeling  the doctors were being unhelpful and wanted to hasten her end before we were ready but often they were very empathetic and supportive. The carers were variable some cared better than others just like real life and as a family we learnt so much and witnessed how care of patients with Dementia has improved considerably.
When they are first diagnosed it may be appropriate to fulfill certain ambitions. My mother wanted to go to Weymouth as it had many happy memories for her and we had a wonderful day on the beach , paddled in the sea, ate ice-cream and talked about those happy days when we were all children. She wanted us all to be together as a family and we arranged this on several occasions.
It is so important if possible that the family keep in touch let carers know about the life of that person and fight for their dignity, plan their future whilst they can have a say and as the rainy day has arrived for them spend the money on what makes them happy and comfortable don’t hesitate , arrange to fulfill those ambitions as far as possible.

image        There are escorted holidays at accessible holiday centres arranged by the                                     organisation Vitalise

http://www.vitalise.org.uk

Many places have gatherings for carers and the patient with Dementia eg the Royal Academy of Arts has an afternoon where they discuss great masterpieces with them over a cup of coffee – the Art student who told me about this said that the patients with Dementia were totally inhibited and their remarks proved to be both amusing and honest!

This event is part of InMind at the RA, a programme of events for individuals with dementia and their carers or family members.

https://www.royalacademy.org.uk/event/coffee-and-conversation-sessions-3

Eventually as with many people as they age their world shrinks and they prefer to remain their home environment and enjoy simple comforts

 
Comments Off on DEMENTIA AWARENESS WEEK (19-25th May)h

Posted by on May 31, 2013 in Current affairs

 

Tags: , , , , , ,