Cultural Shifts in England/A Carer copes
Today’s society is changing. Those who are retired – the over sixty-fives, are living longer, fitter, healthier lives. They are taking a greater part in the life of the nation, stimulated by their television, radio, and music player; handling their latest wireless handheld gadget under the tutelage of their grandchildren. Unfortunately living longer gives debilitating illnesses time to take root and grow… especially fatty deposits that thicken the artery lining. One of these common illnesses is multi-infarct (number of small strokes) dementia, which damages the central nervous system (cerebral thrombosis). The present UK population is sixty-two and a half million… over sixteen percent are over sixty-five. It is believed that that will increase to twenty-three percent, by 2034. The disparity between the sexes - of those reaching one hundred, is closing. The figures for all dementia sufferers will rise proportionally - as the aging population grows. No paper on the subject can be devoid of medical terminology… any research exposes descriptions of steps, tests and effects, different, but meaning the same. I hope I have given a layman’s understanding in a way that helps interested readers, sufferers and carers.
- 1 Vascular dementia
- 2 The Problem
- 3 Function of blood
- 4 Restriction of blood
- 5 Psychological effects
- 6 Symptoms
- 7 The Brain
- 8 Diagnosis of vascular dementia
- 9 Your first immediate action
- 10 Long-term prognosis
- 11 Treatment
- 12 Welcoming a good death
- 13 Self help towards better aging
- 14 The plight of dementia carers
- 15 Where there’s a Will
- 16 Emotional effects on carers
- 17 Listening awareness
- 18 Acknowledgements
This peripheral vascular disease – a disability described as short-term memory loss (impairment of cognitive ability), expresses itself as a mental problem. The illness is mainly age-related although can occur to younger adults. The patient experiences problems associated with: anxiety, depression, panic attacks, muscle-spasms, and convulsions. This paper is directed towards carers looking after aged citizens who have retired from work, and deals with a condition known as: 'multi-infarct' (circulatory matters) 'vascular' (blood related) 'dementia' (brain damaged). There are a number of other diseases and syndromes that can be confused with this complaint. However, a CT scan of the brain, and a number of suitable, clinical, diagnostic tests - day-to-day functionality tests, give signs and symptoms of the illness. The test results are a record of: time needed to make a decision; the concentration afforded to the task, the amount of study given, and the behaviour exhibited afterwards. These investigations give an indication as to which dementia it might be. However, it must be appreciated that early on there are no tests to make a definitive diagnosis - for other under-laying conditions may be present - only time points towards certainty. Changes in behaviour are often remarkably difficult to identify and in this instance the regression is slow.
An individual can age, without being aware that they may be susceptible to vascular dementia. All individuals have inherent weaknesses that can lay dormant, be undetected, until old age degenerates, or the person falls seriously ill. Hereditary illnesses - weaknesses, and physical abnormalities, play a part in every person’s make-up. Some individuals never suffer from vascular dementia until very late in life, others not at all, and some have the problem in middle-age. The problems, when discussing this particular dementia, are the linings of the arteries - that feed blood to the brain. In other dementias the heart and legs are affected. The arteries become coated with fatty deposits (plaques)… which build up and thicken, narrowing the vessel… and over time… harden. The hardened cholesterol, plaque deposits, crack… blood cells (platelets) gather together, forming clots - around the cracks… bits drop off become lodged and the artery becomes choked. The one time free passage of blood is now prevented from feeding the cells with oxygen and nutriments. The progression of fatty build-up in other arteries continues, sufficient to starve more cells. It is believed by neuroscientists that some brain cells can grow new neurons although the growth occurs mostly when young – and then only when receiving the optimum oxygen and nutrients. Once damaged, by blood starvation, however momentary, they die. Aging and stress cause progressive deterioration and impairment, the damaged cell structure cannot reform nor be replaced and the cortex of the brain irreparably damaged.
Function of blood
Blood is the transporter of oxygen to the body’s tissue. It receives oxygen in the lungs which is the function of erythrocytes (red blood cells). Fifty-five percent of the blood is plasma (albumin, globulin and fibrinogen) - the protein, a yellowy coloured fluid… is the medium by which the blood cells are transported round the body - consisting of just over ninety percent water… which diffuses carbon dioxide. The other forty-five percent are the blood cells (electrolytes) - sodium chlorine, potassium, manganese, and carbon irons. The controlled movement of blood (homeostasis): controls body temperature, maintains the correct balance of alkalinity and electrolytes, and carries hormones around the body. The white blood cells are to do with producing anti-bodies, dealing with bacteria, worms, histamine, serotonin, heparin – releasing enzymes; detecting and defending the body’s tissue. It is the lymphocytes within the white cell structure which produce memory cells. As a simple explanation of body needs: food is its nutriments, the liver converts this into energy, bone marrow produces blood cells, the cells: transmit, insulate, protect and nourish; the lungs oxygenates the blood, that produces water… which releases energy; blood transports the cells around the body, the heart pumps the blood, and liver cleans it. It is clear from this simple explanation that anything which restricts the flow of blood is serious.
Restriction of blood
Any action or deficiency that restricts the normal flow of blood is serious… These are some illnesses, deficiencies and congenital problems that have a particular link to vascular dementia: heart problems, high blood pressure, irregular heart beats, high cholesterol levels, strokes, hemorrhagic lesions, diabetes (insulin resistance), and damage brain’s cells. Ageing, alcohol consumption, cancer, dietary matters, sedentary life-style, and stress - that reduces neutrophils – allows bacteria to grow, all play a part in the degeneration process. Preventing the free flow of blood exacerbates underlying conditions… many individuals who suffer from a restricted blood-flow eventually experience some form of dementia.
If the flow of blood to the brain is seriously constrained the brain cells do not receive rejuvenating glucose and oxygen and start to die. This process cannot be prevented but can be slowed down. The unpreventable deterioration is observed by the persons: behavioural dysfunction, change of personality, intellectual deterioration, and memory loss. These changes are experienced by: feelings of insecurity, lacking confidence, of being unloved, threatened – not being cared for - being bypassed - left out, and not wanted. The patient lashes out verbally, accusing those nearest of being unfaithful and uncaring. The unhappy patient gives way to: sleeplessness, jealousy, becomes depressed, feels sad and lonely, starts to become disinterested in food - feels unchallenged and unrewarded… all these depressive feeling reduces self-worth; this further reduces confidence , leads to indecision , and eventually to loss of control.
There is a natural loss of memory as a normal process of aging. Dementia is one or a number of mental skills coming on top of the normal degeneration process – affecting short-term memory, concentration, speech, and logical progression. The degeneration, when is does occur, is more obvious when more difficult mental tasks are attempted. Stress, suffered from failure, further pushes the patient’s remaining confidence even lower. Lapses in memory and reasoning are followed by periods of stability… these give way to further lapses. The gradual downward spiral can be brought up short by a stroke – interruption of blood supply to specific parts of the brain, the results being sudden and permanent: paralysis, speech defect, or seizures. The damage to the vascular system is mainly due to hardening of the arteries… deposits of fatty deposits that restrict the flow of blood… an action that affects the heart (cardiovascular disease, which if blocked causes myocardial infarction - a heart attack); brain (cerebrovascular) disease, blocked arteries causes cerebral thrombosis, and legs (claudication) experience cramps, tingling, numbness, and swollen joints…
Vascular Dementia is to do with a shortage of blood to some brain cells that damage the cortex. The cause is by fatty particles momentarily blocking tiny blood vessels, called the vascular system, carry oxygen and nutriments to the brain. Without the blood’s life giving properties, even for just a few seconds, the receptor cells in the brain die, never to be activated again… the cortex is that part of the brain associated with mental ability – memory, problem solving, control, alertness and behavioural changes. There is no set progression rate for speed of regression; it depends upon which cognitive effect, or effects, are being experienced. The cause of the constriction to the vascular system can be attributed to: a damaged heart, high cholesterol and diabetes. Which of these, and it could be more than one, needs identifying, for remedial help can slow the degeneration.
Diagnosis of vascular dementia
Recognising that you have a mental problem – difficulty managing day-to-day living, sorting out your financial matters, or remembering a sequence of events – is upsetting, disturbing, and notoriously difficult to evaluate. The onset of one or other of these may extend over a long period, to the extent that you may not notice a difference, perhaps you may think it’s just something to put up with – link it to old age, and compensate by being more organized. Your change in behaviour maybe recognised by someone close who can see the difference. Whatever route taken to recognise and accept your deterioration you must do something about it.
There are a number of very good reasons why you should make an effort to find out what the problem is. First, there are chemical procedures that will improve your mental state. These will not present a problem for you to take nor will they remove any other physiological function. There are support groups, and early diagnosis will allow you to make provision for housing, day-to-day living assistance, adapting your life-style and rectifying any bad habits.
Your first immediate action
Your mental health concerns will interest your doctor, who will give you a simple question and answer functionality test. His evaluation, if your fears are correct, will suggest a diagnostic screening to make certain of his diagnosis. First though, he will ask for a urine and blood test to check for mineral deficiencies and infections. He may well offer you a low dose of a named sedative for short term relief. The radiologist will carefully compare and observe the scans, checking for imperfections - giving title to your medical condition… this will confirm some, if not all, of your doctor’s opinions. The neurologist may then give you his opinion on the observations of the radiologist - about your nervous system; a geriatrician or psychologist will advise your doctor on the amount of mental impairment using a series of mini-mental state examinations and abbreviated mental tests… Based on these tests and their scores your doctor will confirm the diagnosis and prescribe a course of antidepressants to lower anxiety, this will slow down the degeneration process, taking away some of the stress and anxiety. A psychiatric nurse will visit on a weekly or fortnightly basis to afford security and well-being.
There are two main types of vascular dementia: those caused by a stroke and a small vessel disease where the tiny arteries are partially or totally blocked. There are others where the patient has a combination of these two. Included are a number of other named types all to do with an interruption of blood to the brain. Starving blood to the brain can occur: slowly and evenly, over a relatively long period of time; in a series of intermittent step-by-step actions, or by a sudden heart attack. If the impairment has been caused by a blow to the head, the effect may not be progressive or fatal but prove to be a permanent disability. A caring sympathetic observation of the patient dressing, putting on and tying shoes, washing, flushing the toilet, and problems of incontinence, will indicate where outside help is eventually required. Evaluating these five daily tasks give The Barthel Index of a person’s functionality.
All medicines can cause side effects. Taking a new treatment should be carefully monitored by the doctor but if at all possible by the patient and carer as well… noting changes in behavior and physical condition. It is essential that both the doctor and patient discuss the benefits against possible side-effects. The main treatments - tablets or/and drops, are prescribed for depression – feeling nervous, confused, lack of motivation and apathy… panic attacks - sweating – feelings of fear, anxiety, palpitations of the heart, trembling, pins and needles in arms or head, fast shallow breathing and unnecessary worry about feelings of insecurity and agitation. Talking therapy, is as important as chemicals – directed conversation by the carer refreshes memory - stimulates, distracts, and interests, the best daily prescription… Communication is essential to promote consciousness, awareness, and positive sensations. If possible try and encourage the sufferer to jot down daily thoughts, reminders, and feelings, without laying too much emphasis on what is written. Both talking and writing therapy is wearing on the carer for any negative remarks or doubtful disclosures cause depression and sets back any confidence built up. Doing jobs in company with the carer is very beneficial. It is clear that in time the patient has to be closely overseen and a referral sought to find a home to make their safety paramount. Relatives must not be overly worried if their loved one seeks and forms an attachment with another resident. It is the job of the care home to act as chaperon for their charges - to see that the attachment does not get out of hand. The Prime Minister sets out a proactive approach for Dementia Strategy to prevent a crisis. He wishes to push forward early diagnosis for suspected sufferers. The latest treatment Acetylcholinesterase Inhibitors (Achei's) have been produced to slow down the progressive decline principally for Alzheimers but also used in some vascula dementia sufferers. There are four brands which are on the market some in tablet and patch form one given in later stages but now being considered for early treatment in conjunction with other Achei's. Simon Lovestone's, Professor of Old Age Psychiatry, King's College, London, has two main interests: why amyloid plaques(protein associated with microtubules)contain tangles, perfecting diagnostic tests to predict which people will suffer from memory loss. Professor Lovestone believes within the next ten years there will be a possibility to slow down the progression of dementia.
Welcoming a good death
You might feel you shouldn’t think about death as that is considered morbid. There is nothing more natural than dying. How often do you hear the remark, “He died a good death.”? What is a good death, what does one have to do to bring that about? By death I mean irreversible brainstem dysfunction where the body cannot be resuscitated. Being in peaceful surroundings occupying a place of calm where you can maintain self respect and have your wishes respected is the basis of a good death. Leaving behind your personal effects in a tidy state that gives instructions what is to be done when you have departed goes a long way to setting your mind at rest. This preparation for death can be started now. You cannot possibly have everything in order but at least just thinking about it positively, will start the process off. Opening your mind to the possibility of death is recognition of where you are now and how you got there. Life is a journey along a path leading from your mother’s womb. You receive genes from both your parents that predetermine certain characteristics both mental and physical these continue to grow influenced by nutriments and stimulations peculiar to your time, place and parents, particularly those from your mother. Your upbringing, schooling, work and leisure shape you as an individual. Along the way you form prejudicial opinions, harm others and say unkind things. Whilst you are still alive there is always time to acknowledge these mistakes. Admitting these, even if its only to yourself, is beneficial, doing something about them by seeking forgiveness is by far the hardest part… but how rewarding when you do especially to achieve your goal of a good death. Writing a Will, appointing an Attorney, filling in an order for your funeral – arranging the sort of farewell service you would like, can be a rewarding experience - highlighting essentials and prioritizing your wishes. When accomplished this will put your mind at rest and may well remind you of happy times, long forgotten friends and mistakes that can be admitted. As the time approaches death try to arrange having a reliable caring friend close by that’ll attend and give notice to your needs. Make sure you acknowledge all your friends and close relatives by remembering their name in your Will mentioning them tells them they have been thought about and not forgotten. A new concept in caring is a Soul Midwife who will be with you to the end observing your needs, giving comfort and safety. An American counterpart is a Doula Midwife who performs a similar task. Their members give training, advice and guidance. As a pregnant woman during labour needs support so do those who are dying? You may move in and out of consciousness just before your death, before your brain ceases to function so don’t put off last minute wishes. To be able to breathe gently is not always possible so try to concentrate on breathing either by counting your breaths or visualizing blowing up a balloon. A good vibration copies the song’s lyrics. Atomic particle science and nanotechnology defines life through energy. Anything which keeps the body vibrating strongly – in tune with time and space will be beneficial. The carer should be confident, calmly responsive to the patient’s mood and condition. Life has an affinity to an infinite variety of electromagnetic waves. It is the lack of nutriments, light and air which results in energy loss. The physics of light colour and sound plays an essential part in life. It would seem clear from those who have been close to those dying a last minute effort is made by the body that is all consuming… this effort leads to a great tiredness that cannot be fought. Holding hands with a loved one, being stroked, kept warm and comfortable as life continues outside the open window… listening to gentle music, are all comforting. The carer may describe the day the music or what is happening outside in gentle tones… a prayer maybe said. As responses fall away a transition occurs which reduces energy, the person passes to peace and well-being, when the soul (a person’s being) is finally freed - given up.
Self help towards better aging
There are millions of people in England - life expectancy is about eighty; one per-cent of the population has a chance of reaching ninety, nearly a third of those will suffer from dementia. It is expected that, as early testing takes hold (Doctors have this as a new goal), the figures for those with dementia will rise and dementia to be shown developing earlier than previously thought. Dementia is caused by poor blood circulation, an accident to the head, a stroke, or fatty deposits in the blood - all can fluctuate, eventually to restrict blood flow - to block nutriments and oxygen feeding the brain. There is a relationship between the mind - the way you experience conscience thought, and brain to form judgments. The brain’s cells and neuron connections cause the body to react. Dementia sufferers have short term memory loss caused by these neuron connectors and cells becoming blocked. Some loss of both prevents: completing a sentence, making projections, forming judgments and coherent thoughts, giving focus, allowing perceptive thought – all necessary abilities for daily living. Long-term (varies from patient to patient – within perhaps three years from diagnosis) patients: cannot dress, need toilet supervision are incontinent, nervous, suffer from extremes of unhappiness, become agitated, over tired, conscience about security and worried about time keeping. Mental processes can be viewed as physical processes in the nervous system. Any blockage in the arteries has a detrimental affect. It is believed that eventually science will identify what the mind is and how it affects the body. There are touchable stimulations outside the body: minerals, flora, and fauna, also untouchable: gravity, light, solar and space, that cause the mind and body to react. These and other stimulations go towards building full human potential. Our minds’ move us from place to place… one thought leads to another and the brain’s assimilations change and adapt those thoughts… they are then recorded and stored, ready to alter future thinking. In dementia sufferers these processes all slowly fade away. To help ourselves fend off dementia we need to consider the following especially those who have a propensity to gain weight, have heart or lung problems, high cholesterol levels, incidences of dementia in the family or suffer from stress. All need to take regular exercise, improve sleep patterns, even if problems are related to genetic faults. Exercise improves heart and lung function which helps transport nutriments and oxygen to the brain. It is the build up of damaging free radicals which oxidize – which develop arterial plaques. Healthy aging can be facilitated. The object is to develop good habits. Doing things together, in a group, spurs people on: reading, playing, gardening, yoga, talking, viewing… promotes social interaction. Physical activity has many benefits including inducing Brain Derived Neurotrophic Factor (BDNF) a secreted protein encoded by the gene – a growth factor found in the brain and its periphery. Take in the sunshine and synthesize vitamin D, help lower your blood pressure. Take on new resolutions before the next year. Get to bed earlier, get in your eight hours by taking a good book, switch off your phone and computers, and listen to your favorite music. Change your diet, eat less meat and eat more vegetables and fruits, reduce your coffee intake, drink less alcohol, consider intermittent fasting and calorific restriction to induce the production of brain derived Neurotrophic factor. Keep an eye on what prescription drugs you are taking. If you are having treatment for diabetes, rheumatoid arthritis, or for poor thyroid function, check with your doctor. It is believed that high Homocysteine levels in the blood plasma cause cell damage – a key predictor of potential health – a low level risk factor for dementia sufferers, can be affected. This naturally occurring amino acid is part of the body’s process, must be balanced, and is highly dependant on vitamin derived cofactors, and deficiencies in vitamin B12, folic acid, zinc, B6, B2 and trimethylglcine. There are cognitive tests and training courses (Cognitive Gaming Platforms) set up on the web that can improve cognitive Aging. If you are going to watch the television make sure it’s a happy jolly program for laughing activates your brain. Leave aside violence, stressful and fearful encounters. Social interaction often assists relaxation, reduces stress, and forms new relationships all good social goals. Those who feel able can volunteer: to give help and purpose, encouragement and pleasure to others, and can satisfy a personal need as well as the need in others, start social networking you’ll feel so much better and may introduce you to a new language or taking up a musical instrument. Look at the letter page of your local newspaper and form an answer, even if you do not send it - the intent alone creates interest and association.
The plight of dementia carers
If you had said to me five years ago that I would be writing this I would have laughed you out of court, literally! But then: I was an ignorant, innocent, without a care in the world, busily writing and painting my next picture, planning my holiday trip – to sweep down the slopes of Zell-am-see… wondering if my boots would last anther season debating to myself whether I could keep up with the Germans in the top class? My wife concerned about her health lined up another day’s vitamin pills to beat Old Father Time whilst declaring to all and sundry her pills would be her salvation; if she didn’t have them with her in her coffin with her then it would be her duster… if the volume of pills were to be her judge they would win by a whisker. Being younger and brighter than I she planned for all eventualities particularly a long-life. At one stage in her career she had been referred to as ‘Super Woman’ by the Daily Mail’s Financial Editor, and lauded by her peers. It was twelve years ago when we bought our spanking new car ‘for our future’. We had expectations of balmy summer days spent visiting National Trust, houses and gardens, picnicking off the rear let-down space with chairs and table carefully tucked away - secured in their restraining straps. After paying over our hard earned money - to afford the latest and probable last vehicle we were to own, we gazed in awe at this superb conveyance. Now we were one of the retired hoards about to have a final fling together in comfort and style… gone were worries and concerns… we, like Kenneth Grahame’s Mr. Toad, were for the open road… However, it was not to be…: why was it so impossible for her to let go of a habit of a lifetime? She put down her pen filing the last client’s particulars. The back and stomach aches, that seemed to come from an old operation, continually nag her. Visiting the doctor became a monthly event then weekly - I began to loose count, this was becoming no flight of fancy but a worrying necessity. Her NH doctor gave up the unequal struggle - suggested a new surgery closer to home - the last consultant had, after another round of x-rays, the audacity to laugh…! Did he guess what was wrong? Time did nothing to help relieve the boredom - of not having to achieve goals. Being wanted, admired and made to feel important had been her driving force. Even though now, since retirement, there was time to read, to walk, and take-in the countryside. These past-times were no compensation for a feather-in- the- cap or pat-on-the-back. What price now the inflated bank balance and exciting anticipation of the share market; why did she have to start these recriminations, accusations and doubts? Perhaps taking up petit-point again may help to relieve her aching heart? The new doctor seemed to be able to see the situation clearer. Was he pre-warned - asking penetrating questions about: lifestyle, hobbies, friendships, leisure activities and personal anxieties, probing what was causing her paranoia? He arranged a visit from a healthcare visitor to see the home environment - just to get a feel for the situation. This prompted both a Magnetic Resonance Imaging (MRI) and Computed Tomography (CT) brain scan, and a further home visit by her doctor – psychiatrist, who gave her a series of test combinations including a Mini Mental Status Exam (MMSE) and follow-up interview to complete the test procedure. The complaint was declared to be probably vascular dementia – one of the many brain disorders along with Alzheimer and Parkinson’s. Now at last there was a name for her condition and known future outlined. What on earth was dementia and how could someone so switched on as my wife get it? A period of study took over my life. Gone the writing, the past life of painting, the much enjoyed delving into history, now I had to learn to save my soul and help my wife. Thank goodness I was computer literate I could delve into and consult the latest medical discoveries and find out how others in my position were coping. Whilst I was doing this I was forced to take notice of my wife’s odd behaviour in the home and community! It was brought home to me very quickly how local people judge others - who are in distress. I was hugged and vilified, befriended and distrusted. There was no way I could educate those around me of my true feelings and what I was putting up with, I just had to get on with it. Fortunately my wife could rationally take in that her care was going to be of paramount importance. Thankfully I had been the person who stayed at home shopping, cooking and looking after the home - this home building was second nature. Maintaining the fabric of the home, planning extension and executing them had been a personal past-time over thirty years. I had the tools and the expertise. We decided early on to think about how my wife wanted to live her life. In cases where the patient is docile – amenable to taking instructions and easily amused, a series of expeditions - days out, holidays, and local events could be planned. In this instance it was the reverse, her anxieties, worries about security, impatience and confusion heralded each living day and night making everything stressful. Now what was wanted was a socially secure environment in pleasant comfortable surroundings with twenty-four hour help on hand. Where were we to find this? How much was this going to cost and how was it to be paid for? I had to find out what was available in the area – what was on offer and affordable. It soon became clear that to provide all she wanted would cost a thousand pounds a week. Finding £52, 000.00 every year was going to stretch the budget - we had less than that between us with a mortgage to pay. Obviously the main house would have to be sold and along with that the furniture and the rest of the contents which would not fit into a one bedroomed retirement bungalow, let-out and kept for just such an emergency - then the mortgage paid off. A secure home for dementia patients was finally agreed upon and a series of visits and stay-over’s arranged. It all went amazingly well. The care home was accommodating, the staff pleasant and helpful and the surroundings perfect. What was not expected by me was my wife’s speedy request to become a resident – she was both adamant and happy with her decision, choosing a room and the day to start. The house was put on the market. A value estimated and a completion time span given. I had to plan quickly for if completion was going to be that fast as believed what was I to do with the bulk of the furniture? The children asked what they wanted. Their choice did little to relieve the situation. An auctioneer was chosen and our precious highly polished furniture wrapped and consigned to the removal van. I will never see the likes again, a lifetime’s endeavour, a van of much dusted belongings including some of my paintings trundled out of the gate. At this juncture I thought it sensible to re-read my wife’s Will. What a shock; a closer look revealed everything in the Estate was in her name – in Trust. The more I thought about it the more I resolved to make sure I became in the end sufficiently independent with my own home and my own things about me. The County Council’s loan was to carry the period between selling the house and its completion - having to be paid back when the solicitor received the purchase price. There was no way, at my age, was I going to seek permission from anyone else to plan my salvation. A solicitor was needed, and fast, but would they see my case clearly and be sympathetic to my hopes for the future. Now that my wife was taken care of what would they advise and how long would it take, more importantly, how much would it all cost?
Where there’s a Will
It is generally only in later life that an effort is made to write a will even though all solicitors point out the pitfalls of not doing so; appointing an attorney comes second - for putting your private life in order, and a guardian for your children a close third. This story gives an instance why it is so important to think carefully about what is yours to pass on, what is not, and why updating a will is so important. I would like to inject a further consideration, why not sit down and make your intentions clear to your nearest and dearest. If you cannot, because it would cause dissention, you know that either your intentions are wrong or you have badly explained your reasoning. In ancient times a person’s possessions were simply distributed to the family. Later the Greeks stipulated that a man’s belongings be given to whomsoever the possessor pleased given certain class conditions like citizenship. However, the Romans granted both, wanting to protect the family – to keep up family rites whilst ensuring that heirs and descendants had secured for them a legal minimum; the will, they asserted, having to be signed by the testator (person leaving a will) who lists the assets as an important addition. In Justinian times the family gave way to an heir liable for the debts arising from a list of assets, and by the time Augustus took office the will became operative from the time of making - not waiting for death. Constantine’s Christian England charged all lands and goods to a male heir although some rights of the wife and children could be recognized. This continued until the dissolution of the monasteries when all land could be owned absolutely and inherited, if given by will in writing - signed before a number of witnesses. In the middle of the eighteenth century there had to be a reliability of witnesses as long as they didn’t receive any gift. Any change in disposition of land, after the time of making the will, required a new one to be made. Regarding everything else, other than land, a man couldn’t dispose of personal property without considering his wife and children; in the case of a wife she got half, if there were children as well they all only received one third. The Wills Act of 1837, set out much of what we understand today. Gradually precedents gave direction - shaped decisions for the court. Rules of interpretation are many. Changes in circumstances such as divorce, marriage, children, and influx of new capital etc., require a carefully worded codicil or a new will. In the event of questioned mental capacity the existing will stands resolute. If there is an illegal entry, or other such bad entry, that doesn’t condemn the whole the good entries hold true. When the will is read it is important that any error be quickly recognized and noted for the sale of land, property and goods can go ahead before correct ownership revealed and respected. Over fifty percent of all those who die don’t leave behind a will nor appoint an attorney - to ensure their wishes properly taken care of. There should be four important considerations uppermost in a married couples mind: talking together about their hopes and fears (see: Cultural Shifts in England/Marriage), making their wills, both having their own attorneys, and providing a guardian for their children – all these should be put into place before some dreadful accident or failing mental health. Consider the following: A couple marry - the second time around for both - each having their own children. He retained custody of his under age children, she having lost custody of hers (now looked after by her ex-husband), moved into his furnished house taking over the household tasks whilst keeping up with her freelance work. After twenty years of happily married life the husband makes a will leaving everything in Trust for his children; itemizing every single item in the house - for insurance (replacement value) purposes. In the will (on first death) - the husband’s death, he passes his Estate onto his wife. Investing in a Portfolio Bond, written up in joint names, he provide his wife with a means to maintain her life-style and something to upkeep the Estate - to maintain its value. On last death (the eventual death of his wife), the Estate passes back to his children. If the wife wishes to make a major change she has to seek permission from the Trustees, their task being to administer the property as set out in the deed, his Executors appointed to execute his will. The family solicitor advised the wife to have an independent lawyer look at the husband’s will. The wife, respecting her husband’s financial and legal expertise, whilst sharing the same family solicitor, thought her interests would be attended to - refrained from questioning the will. On the face of it this will, as written by the family solicitor, covers the husband’s desire to look after his children and his wife. Unfortunately the will, upon his death, limits the wife from building up her own Estate and restricts certain freedoms. The husband, being prone to a heart condition, had a series of mini-strokes which may have caused vascular dementia. After diagnosis he immediately asked his wife to be his attorney for both finance and welfare. Social Services advised employing a solicitor to put into place Lasting Power of Attorney (LPA). Wanting to change his will, to include some missed out property, the husband found his mental incapacity preventing his solicitor from considering him fit - his existing will had to remain in place. The wife then interviewed by Social Services, who guided her through the likely course of her husband’s illness, including the difficulties she would experience when continuous care or confined care was going to be necessary. She asked whether dementia could result in her husband’s earlier death. She was told it was possible. Her adviser told her she should visit local care homes to see what was on offer and to ask what the costs were likely to be. By this time her husband was wandering, unable to rest or sit still, remaining awake at night - being plagued by anxieties. He started to accuse her of unfaithfulness and abuse her. Her delving into the availability of a residential home and their costs jolted her. A bill of a thousand pounds a week = fifty-two thousand pounds a year, would soon clear out both their savings, what then? The wife tried to remain apart from his terrifying accusations now knowing his illness would need confined care in a residential home where he felt happy'. The wife then began to visualize how her future life could be, if she did not plan ahead… made a point of visiting all the local care homes - to get a feeling what was in store for her husband and to give him a chance to become acclimatized to a new, safer future. There was a fine choice but one home in particular stood out and a day’s visit arranged. After an interview with the person in charge a one day’s visit succeeded to two - which progressed to weekend stays. These trials proved that here was a solution. Would he be happy as a permanent resident? She could see he looked forward to these secure, social surroundings, appreciating the outings and various entertainment schemes promoting group interaction. With this he certainly looked happier. After a period of time he declared that he wished to become a permanent resident. Within the month he became a resident. She now began to seriously consider herself. How was she going to cope with the bills, maintain the home – be on her own after sharing all her past life; what would happen if she wanted in later life to: share her home, rent part out, seek equity release, find a companion, perhaps remarry, move home against the trustees or executors advice, provide for her own care or leave something to her own children etc.? Having made a vow, ‘through sickness and in health’, was stricken by guilt. Her mind went round in circles, there were so many permutations. She hurried to her solicitor... In hushed, formal surroundings, she told her distressing story emphasizing how she wanted to be able to plan her own life now he no longer needed her. Her solicitor considered ‘a statuary will change’ on the understanding the husband, “lacked knowledge or approval of the contents of the will”. However, wiser expertise was sought from counsel who recommended either a straight forward divorce or judicial separation, both would result in Ancillary Relief splitting the estate. Judicial separation sounded morally easier to consider for it was difficult to divorce a loved husband who now needed specialized care. After facing questions from the other side, and from the court, she changed her plea to divorce to make the case simpler. The court asked the wife to discharge her Lasting Power of Attorney (LPA) giving the reason that it would be ‘a conflict of interest’. A litigation friend was sought from the family who elected the second attorney to replace the wife, who stepped down. The petition signed by the petitioner (the wife) sent to the court, and offered to the respondent (litigation friend standing in for the husband) was not contested. Filling in Form E - outlining financial particulars was requested by the court from both sides… to be returned to the court and exchanged between the petitioner and respondent to help form an agreement. During Financial Dispute Resolution hearings further resolutions were agreed and an application for nisi lodged which was later accepted. After a series of court meetings, both sides negotiated a draft agreement. A Final Dispute Resolution hearing was ordered by the judge during which both sides were asked to negotiate and refine the issues - after the petitioner had answered a questionnaire. Each party was asked to file and serve a position statement setting out the final order they seek and an analysis of other matters. Quickly an agreement was hammered out resulting in the wife being awarded the small cottage with a sum of money for maintenance. Conclusion: The husband had not kept his will up-to-date, nor had he considered he might suffer from dementia that would stop him updating it. Including his wife’s personal possessions in his list of contents was an unfortunate action. The husband and wife should have discussed how their wills worded: to allow them each to share the estate to celebrate their long and happy marriage and for both to to mention their own children. There should have been a consideration for the last survivor – to be able live in a furnished home, with enough capital to look after themselves and their property
Emotional effects on carers
Dementia sufferers are people who cannot finish, or stumble over, a sentence or word, find it difficult to concentrate or sit still, wander or hallucinate: cannot finish dressing, decipher a letter, work out simple sums, and complete their daily toiletries. Sufferers may fear anything new especially if it disturbs their routine, disliking guests and visitors. However, they can hold a tune, beat out the time, remember the words of past favourites, and take part in simple social rounds - appreciating community get togethers’ and sing alongs’. Emotions are exaggerated, highs are ecstatic, lows maybe suicidal or simply complaining - of being tired – overcome by imagined work and disturbing distractions.
The dementia sufferer can react to their inabilities and mental turmoil’s: becoming frustrated, nervous and shy, feeling exposed and isolated. This leads to suspicions, anxieties which lead to aggressiveness - can cause a panic reaction, reducing what little confidence they previously held onto.
Closely attending the patient is their carer(s) who, however experienced, can be also be affected emotionally. The carer, perhaps the patient’s nearest and dearest, can be made to feel inadequate, unwanted and unappreciated. Dementia sufferers are as likely to be as emotional as their carer, the difference being those with dementia cannot explain rationally what they are feeling, having peaks and troughs of contentment and unsettledness, security and fearfulness, happiness and sorrow.
Coming to terms with a partner, relation or friend, who appears inadvertently to become forgetful, unsettled and dissatisfied is a shock – you cannot believe what you are seeing and hearing – believing that a good holiday abroad or the summer sun clear up any perceived differences. Not only is that ridiculous but the reverse is true… both the sufferer and the carer are on a downward slope - the sufferer will steadily worsen and the carer may become unable to cope. However, the carer has no option but to develop the ability to pre-think what the sufferer needs, has to be more attentive - be on hand twenty-four hours to attend, at the drop of a hat, with their charges frustrations and their own incredulous disbelief and sorrow. Question: Do you believe you are up for this?
Now the carer has to consider not just tomorrow’s food but to hide the matches, not just to close the door but hide the keys - knowing where your charge is at every moment. The eyes of the world are upon you - your neighbours, friends, fellow citizens - whilst not forgetting the local services. It’s no good being shy or introverted because you are forced to be ‘out front’ – now in command – leading life’s charge. You have to be tough!
The state of consciousness: shock, confusion and disbelief, that a loved one has dementia produces an immediate strong bodily reaction – a visceral (automatic) arousal – physiological changes which produce increased heartbeat and a gasp for breath; moments later that news is supplemented by (cognitive or conceiving thought) becoming threatening, confusing and frightening – the news now becomes an interruption, a disturbance to your life, perhaps a challenge, but whatever emotion you have your life as one of the many carers will never be the same again.
As a carer you will have to cope with the three G’s, grief, guilt and governance. Grief, in this instance, refers to taking on-board the change (loss) of the sufferer and how you cope with the situation. Guilt is about culpability: what part you played in their life previously, having to play now, or likely to play in the future – whether your part is based on assumed responsibility or love. Governance is how you are coping – in what manner – what strategy you are adopting - now that you have someone relying on you. What is your state of compassion?
Let me try to explain. You know your partner is acting oddly. The doctor is consulted and conducts a memory test. The result is suspected dementia and the prognosis is… BANG…your partner will die much sooner than you expected: you have to watch your incredibly efficient partner slowly fade from your eyes and shortly may not be able to find the toilet in time; you may have to be on call 24 hours a day when you are used to having the freedom that retirement promises; you may have to place your partner into a care home because you can no longer cope - something you never ever thought would happen to the vivacious and beautiful woman you married; you may have to manage every single aspect of your partner’s life, taking over all of their responsibilities, as well as your own… what if you never learned how to boil an egg? Now what about that new income insurance, the annuity you were going to take out, how about the children’s inheritance and perhaps you had better write out a new will! You will now have to learn how to live life all over again.
You take this all on the chin pleased that someone else is involved and understands. You of course DO NOT but make out you are up to the job of caring – whatever that is! This news all comes with a resounding clash of cymbals. What about your holiday booked and a planned, visits to relatives at Christmas. As the days go by turning into weeks and months your partner shows more symptoms of confusion and your study of the subject gives you no satisfaction – your old age is going to be torn apart and your slippers by the fire with a warming glass of sherry disappearing fast… you’re afraid to sleep at night, because your partner is wandering about the house perfectly capable of setting lite to it!
Dementia incidence is set to rise in England as population projections predict an increase in the proportion of older people. The government now promotes and pays for general practitioners to positively seek out sufferers. Most of these sufferers are supported by relatives who play an important role in the care of this group. The media now understands the seriousness of dementia and appreciates the role of the carer whether natural or forced, state or private, informal or professional.
Like all challenges or tasks the carer’s ability to cope will be enhanced by the use of positive coping strategies. Whilst most State carer’s are generally satisfied with the National health service (NHS), the few interventions by managers directed at improving carer outcomes have mixed results. The conclusions are that many studies show limitations in standard procedures; few gave definitions of ‘informal’ carer work patterns compared to’ professional’ there being a predominant use of cross-sectional/specialist studies and non-standardised outcome measures. Future studies by Charity concerns should broaden research into evaluations of quality of life, using standardised measures, employing either a longitudinal or randomised control design, to improve the statistical results.
Both the patient and their carer are affected by their emotional state, each having two automatic response’s: mental, which gives feelings of: sadness, annoyance, despair, misery, elation and excitedness etc., and bodily: blushing, twitching, shedding tears, smiling, frowning, grimacing etc.) We have all cried over the loss of Bambi’s mother and ‘felt a lump in the throat’. When we walk in the dark and someone jumps out at us our throats go dry and we turn to run. We hear the shriek of terror as the fox jumps and feel for the rabbit.
The vain attempts of the dementia sufferer’s fumbling - to leave the house, as the carer looks on… How is the carer affected, does the carer stand up to help, and to what degree does the carer feel for the patient, for not every carer will be equally affected? Some individuals are very emotional to the degree they do not “take charge”. A soldier who cannot kill is equally quite hopeless in face of the enemy - dangerous to his colleagues. Being surrounded by those in need can make the most kind hard. To maintain a caring spirit needs sympathy and empathy (compassionate care).
“Are you listening to me?” The mother’s irritation was all too obvious, frustration elicited further calls. She frowned…: “please try and concentrate dear…” she quickly repeats her first cry with a restrained gasp for breath. The child looks up obeys the request without a word, having heard his mother’s cry many times before. The child’s multi-tasking habits allowed him, at the same time, to receive instructions from “The Dark Rider” - a hand held e-game.
Perhaps you can sympathize with the mother or can take onboard the child’s response receiving instructions whilst trying to concentrate on something else. When listening to a patient, someone elderly… perhaps dying, a sick child or someone grieving we need to do something more than just listen we have to be empathic; give the other person our ‘full attention’, to try to discover what the other person feels as well as what they say.
We need to use both our mind and body – to be sensitive to the other person’s needs. This requires concentration and an understanding, to offer our full presence and be compassionate. If the conversation is part of an ongoing surgery, school/college seminar or business discussion connection with the other party is improved if obvious interest is shown by eye contact this will enhance the relationship and deepen the experience.
Everyone has had experience of being asked, “What did I just say?” Then being stuck for a reply. Being fully aware of what the other person has said needs comprehension and sympathetic understanding, which includes, if possible, putting yourself into the other person’s shoes - in experience and understanding. For such the occasion requires full attention.
To receive the spoken word we listen to sounds – ‘we hear’. That does not necessarily mean we understand nor ‘feel for’. Hearing is one of the five senses; hearing, sight, smell, taste and touch. These experiences can be triggered using one sense at a time, although other senses are triggered but remain peripheral until called upon. Senses quickly pass from one to another – fliting and darting about, selecting the most appropriate answer. The brain with all its function defines the words, selects an appropriate answer, taking regard for the other person’s vocabulary, then giving them meaning in such a way that offers understanding, friendship and compassion.
Messages from the senses have to be interpreted by the brain: catalogued, understood, valued, imagined and given reason. This is done using our experience, understanding and imagination.
To fully listen and respond what should we do? Be attentive, show that you are taking in the words, be positive in your actions, make sensitive bodily reactions, smile or frown, nod or shake the head. We often get caught in our own need to ‘do something’; when really what is needed is deep listening whilst showing concern.
Each of the senses blossom by using the others to compliment and extend their arousal. Listening requires positive action allowing the sound of the word to be analysed in the brain to trigger intellectual knowing and reasoning, allowing greater options of interpretation which broadens understanding.
The person spoken to maybe ‘hard of hearing with poor sight’ confused, bewildered, agitated and muddled. The speaker observes their face and eyes, maybe using their sense of smell - can almost taste the atmosphere, become uncomfortable – unable to sit. However, they concentrate on what the person is saying feeling the words stir-up and trigger emotions. They hold hands perhaps the listener gently strokes the persons head or arms listening with their body as well as their mind still seeking a fuller understanding.
A person uses stored knowledge, feelings and experiences which may be misunderstood or badly interpreted by: lack of education and social interaction, limited worldly experience and interests, poor physical or mental agility.
To listen with purpose suggests: the listener wishes to be ‘with those’ they are listening to. To be accepted by their presence and to place themselves ‘close within.’ They wish to be purposefully attentive, neither falsely nor selectively, without distraction; offering themselves instinctively - by wishing to be. Not by jumping ahead to shut down the conversation.
As those who work with dementia sufferer’s short term memory loss is critical, the patient has not the ability to retain the information let alone store it. Although it is the least active of our memory support systems, being unreliable and temporary - limited in concentration and recall processes, it is our only recourse. Whereas our long term memory is where important information is stored - being permanent, having all the valued information added too by the senses; the whole could be referred to as conceptual consciousness.
Listening with purpose – to make a connection, requires effort: you listen using sympathetic comprehension – ‘applying the appropriate senses’. You interpret the words and expressions used – questioning your own understanding by taking into account that ‘you maybe misinterpreting’. You question, compare, nod, laugh, raise a hand, shake your head, frown, draw breath, shuffle, and shrug or draw away - you do everything you can to indicate you do or do-not understand.
However, you try to sympathize and agree by subtle interpretation – you try to empathize – see their point of view – understand what they are trying to get at, because you want to – you care for them, want to help, be friends. But the environment is getting in the way. There are distractions which effect other senses, you miss the point, cannot interpret, you are emotionally affected and outside forces come inbetween. If only they would stop chewing, fiddling with their phone, scratching and shuffling their feet. Why do they continually complain and not see how they are being helped.
There are differences between the behaviour preferences and interests of men and women. Men are generally concerned with action, “What are you going to do. Have you come to give me a test?” They are trying to get to the conclusion before you have your coat off believing they are being understood pushing on with their opinions. Women are attentive wondering if you are going to be a friend, look after them, be sympathetic; wondering if they are being judged, if they lack the proper preparation for the encounter.
When listening you analyse – judge the person by their clothes, bearing, dialect, use of words; estimating their ease in your company. Are they trustworthy, do you think they are biased, misinterpreting the moment, speaking from an invisible script, competent to offer first-hand experience, old enough to have been seen and heard above all others? Do they acknowledge their fears, problems, hopes and expectation in answer to your sympathetic questioning?
When listening it is important to show understanding by non-verbal gestures as well as prompting the conversation to continue by saying “Yes, go on, OK, right, exactly, too true, that’s fine, I understand, what else?” It does not mean you have to be dictatorial or demanding. The speaker wants to know your feelings, emotions, thoughts - how you are being affected. The listener should encourage the speaker to expound and to give a personal view based on experience and understanding. The object is to come away from a conversation with the main point in your mind to file away what was relevant to you. Look the person in the eye occasionally so as not to embarrass but to share the moment.
Jot down key words on a note pad giving the date and names, subject and conclusion. Should you do something when the speaker has gone to progress your knowledge. Find out if there are suitable reference books and webpages. Can a library book be ordered, is there a local information leaflet. Take an interest in the subject and seek out more facts so that the next time you meet up you can confidently add to the previous conversation.
As with all human behaviour the sense of hearing needs a purposeful content. You have to concentrate whilst continuing to have bodily function. The other senses give a back-up to full participation to your goal of empathic presence. Both the speaker and listener need to be relaxed, calm and attentive to gain the most from the experience. Breathing deeply, standing or sitting comfortably, blotting out extraneous noise and goings-on, concentrating on the other person’s attitude and friendliness. Let the person, both their voice and intent, enter your body.
Human beings have been blessed by the use of language which has been refined and added to. It is this that makes us superior to other animals. Obviously the greater the word power, using concise: diction, pronunciation, idiomatic usage, and definition, the greater the understanding. However, without giving the language space to operate – to make sense, the more limited the understanding.
Dementia: Alzheimer’s and other Dementias at your fingertips (paperback) By Harry Cayton, Nori Graham, James Warner. Class Publishing: 3rd Edition. Hodkinson, H M (1972) “Evaluation of a mental test score for assessment of mental impairment in the elderly.” Office for National Statistics: Population Estimates. Revised 2002 – 2008 – 2010. Functional Evaluation, The Barthel Index. Florence I Mahoney MD and Dorothea W Barthel BA PT. Maryland State medical Journal 1965. The Dementia Centre provided by Personal Services Society UK. The Dementia Services Development Centre, University of Sterling. Alzheimer’s Society information UK – Progression of dementia. Baddeley A D (1986) Working Memory; Oxford University Press. The Structure and Functions of Blood – Vascular System <ivy-rose.co.uk> The Soul Midwives by Felicity Warner, pub. by Hay House 2013. Food for the brain, Alzheimer's report 2012.The Oxford Companion To The Mind, Ed. Richard L. Gregory; Emotional Intelligence by Daniel Goleman, Bloomsbury; Emotion and consciousness, TICS-565; by Naotsugu Tsuchiya and Ralph Adolphs.