What a Dilemma! - Leaving Home

What a Dilemma! – Leaving Home

Martha, aged 79, is not managing too well at home, her sight and hearing are slowly deteriorating, and it is obvious to her friends and neighbours that as she struggles to walk and do daily tasks, she clearly needs more help than they can give her.

Martha’s daughter, Veronica, lives in the Midlands while Martha lives in the family home, tucked away in a picturesque village on the South Downs .   Veronica is worried about her Mother and comes to visit as often as she can in between managing a full time job and two lively teenagers.  ‘It’s time I took action and start making enquiries about a suitable residential setting near to me and the boys,’ she muttered to herself.   On several visits over the last few months she had had difficult conversations with Martha, some of them ending in tears, others in anger or silent resignation.  

The day arrived for Martha’s move to the Midlands. The car was already loaded, the ornaments and family photograph albums tucked between the clothing in the suitcase, and only yesterday Martha said a tearful ‘Goodbye’ to Sammy her twelve-year old cat as he was driven away to the cattery.

On reaching the car where Veronica stood waiting with the front passenger door held open, Martha slowly struggled to turn and take one final look at the home in which she and husband, Leonard, had brought up their three children, Veronica, the eldest, a partner in a law firm, Victor, an engineer working in the Far East, and Albert, the youngest, living in Scotland with his family of four children aged 4 to 14. Martha fought back the tears as Veronica started the engine and pulled away. She didn't want Veronica to see her upset as she had gone to so much trouble to find her a place to live.  'I should be grateful' Martha thought, 'she's worked so hard to find me somewhere near her, and she says I'll love seeing the grandchildren more often.'  The journey lasted over five hours, punctuated with a coffee and combined toilet stop and an occasional comment mainly about the traffic and the weather.  The silences hung heavy between them. They reached St. Agatha's Nursing Home as afternoon tea was served. 

The large oak door swung open.  'Hello, you must be Mrs. Jenkins, we've been expecting you. Come in now and have some tea. You must be tired after your long journey.'   Martha, using her walking frame, inched along the hallway and was shown into a sitting room. Although her head was partially bent downwards she could see enough to realise that there were several people sitting in armchairs.  She was shown to a vacant seat and Veronica instructed Martha to turn round and sit herself down. 

'We'll get you some tea, while I take your daughter to the Office to sort a few things out and then, when you've had your tea we'll come back and take you to your room.'
A ginger cat wandered past Martha's feet and she wondered how Sammy was faring in the Cattery. 'I hope someone will take him and give him his favourite fish,' thought Martha. 

She finally got to see her room, No. 27.  She hoped she'd remember where it was but her initial thought focused on the toilet.  'I need the toilet,' Martha whispered, and was shown to one two doors down on the opposite side of the corridor.  The Manager, Mrs Mehta, and Veronica talked quietly as Martha slowly made her way and then the door was shut behind her.  At last she was alone for a few minutes.  

Now back in No. 27, Martha reached a chair beside the bed, Veronica bent and kissed her cheek.  She was in a hurry to leave. 'Im going now, Mother, I've sorted everything. Now you've got nothing to worry about and I'll be back to see how you're getting on in a few days.  Be good now, and don't give the nurses any trouble,' and with a final wave she was gone. 

Martha sat staring at a photograph of Leonard, positioned on the bedside table. Her thoughts wandered from Leonard, to Victor, to Sammy, to the 'Farewell' tea the neighbours had brought to her home just yesterday.  Those faces seemed a long way away. 'Will I ever see Marjorie, Rose, Dorothy and Peter again,' she wondered. Even the Meals on Wheels Lady had called in for a cup of tea and slice of cake.  Her thoughts turned back to Leonard.  She wondered what Leonard would say about her sitting here in this room on her own in a place she'd never seen before, not chosen.  he wouldn't have liked the fact Veronica was selling their home. Veronica hadn't told her how much it cost to stay here but she knew it must be expensive if her home was being sold. At that thought she shed a tear.  She felt abandoned and wanted to shut her eyes and not wake up. 

Martha was interrupted by a knock on the door.  'Can I come in. You've just arrived, I know. It will feel strange at first but you'll soon settle and in a little while I'll come and get you and you can meet some of the other residents before supper.'  Martha was alone again and thought some more. 'I don't want to meet the other residents,' she muttered angrily to herself.  Martha shed a silent tear as her thoughts turned to everything that was familiar to her. 

There was her darling, Sammy, her home, already with an estate agent, to be sold as quickly as possible to pay the Nursing Home fees.  Then there were her kindly neighbours who popped in daily and did her shopping.   Then there were he nurses who came three days a week to dress her leg, the milkman who made her a cup of tea on Saturdays when her neighbours were busy with their families.  Martha thought of her Day Centre friends, she only went on one day a week but she loved the ride around familiar roads and the chats they had together.  They were like her family, too.  She slowly left Leonard and looked around the room.   'Where was the telephone?  How will I get in touch with Victor and Albert, and what about the neighbours?'  She hoped Veronica had remembered to sort out the phone but she couldn't ring her to ask.  Her mind wandered off into thoughts of her Doctor whom she had known since the children were small.  ‘Who would look after her now?  She admitted to herself that there had been times she was lonely, terribly lonely, when the neighbours were away, usually babysitting the grandchildren, the milkman was on his holiday, there was no post and the nurse phoned to say they were extra busy and she would have to wait for them to visit. She was alone now and a great wave of fear surrounded her.  She was amongst strangers who seemed kind but she didn't know them, she couldn't understand some of them and she was worried about whether she could afford to stay.  Veronica said they'd had a prospective buyer for her home.  Her beloved home, ‘Oh, no!  How could Veronica sell the family home where the swing still stood at the end of the garden and Leonard's rose bush that he'd given her on their fiftieth wedding anniversary, was still in bloom.  Memories and emotion mingled together. 

'Now Martha, we can't have you sitting here on your own, come and meet your new friends.'   Martha, at that moment, didn't want to meet anybody, she wanted to go to the toilet and she wanted Veronica to take her home. 

Veronica drove to her home with a heavy heart, yet she was relieved.  Mother was safe, she'd soon settle, she mused.  The next morning she phoned the Home's Manager.  

'How's my Mother, Mrs. Jenkins?  I'm her daughter and I want her to be happy and settle in.  Please, if anyone phones to ask after Mother, say she's fine and they're not to visit, send letters, or flowers.  I want to make sure she isn't unsettled with constant reminders of home as it will upset her and I have enough to worry about without her being disturbed.'  As I said yesterday, this was a difficult decision to make and I want to be sure I’ve done the right thing.   Mrs. Mehta had heard similar requests from relatives and gave a deep sigh as she replaced the phone on its holder.

Veronica put the phone down abruptly and convincing herself she’d done the right thing reminded herself that when she visited at the weekend she must take Mother a new nightdress and some talcum powder.  She added it to the list where she had written socks and vests needed for her son’s football match that she was driving them to on Sunday. 

Ann Macfarlane OBE

Restraint: Taking the Heat out of Challenging Behaviour?: the resilience of older people in residential settings

Older people can so quickly find that negative labels are pinned on them.  They are labelled as exhibiting challenging behaviour, defined in my terms as shouting, abusive language, and sometimes unnatural physical strength.  In the majority of people these behaviours are known as anger and aggression but in residential settings everything ordinary changes as a medical approach takes over.   Residential settings provide an environment where every day seems the same, where people cannot remember the day, the date and time, where activity is inactivity, where there is nothing in common with the strangers sitting either side and the staff supporting them are strangers; where the television blasts out its repetitive messages displaying indecipherable pictures, where a radio pumps out songs with no distinguishable words, often competing with the television clangour at the same time.   It seems that coming from the outside into this environment and atmosphere where ‘one size fits all,’ older people display amazing resilience with the ability to survive in this bizarre and bewildering artificial world.

So am I being over the top, who am I to say how it is? 

First of all I have first-hand lived experience, not just of one setting but of many.  Secondly, I am privileged to have the professional position to visit a wide variety of residential settings where similar situations are witnessed over and over again.  Put twenty to thirty people in a multi-purpose room, create all of what has been described above, and you are transported into a very depressing and overwhelming environment.  Add to this experience overpowering heating levels where to feel fresh air on ones’ face is a rare or non-existent occurrence.   It is not difficult to restrain people.  Turn up the heat on people who have lived long and who have reached a point in life where losses experienced are multiplied several times over and often occur simultaneously, drown out the sadness with a cacophony of sound and the one thing in your control is to exert ‘challenging behaviour,’ or fall asleep.  Add to this a time in life where the bladder weakens, more toilet visits are required and while there is a desperate need for a second cup of tea, and where the fear is that even one cup of tea will demand a trip to the toilet the result is that each day is spent in constant worry.  The concern is that an accident is likely to occur and one will be labelled ‘demanding,’ ‘selfish,’ inconsiderate of others and to ring that bell for help is one ring too many.   

If you feel the scene is too unbearable, maybe it is because you have been in that difficult position yourself or have spent time agonising over finding a setting for a relative or friend.  It can be an agony or it can be a relief when you find a setting that ticks most of the boxes..  Whatever the emotions, it is not you that will live in that setting.  There are instances where relatives or guardians weald the ultimate power of denying a resident any outside contact.  And this is their home!

Restraint is often applied when it is deemed a person will get up from their armchair unaided or want to wander outside.  Let me pause a moment.  How often do you get up out of bed or from a chair without thinking, arrange to do things outside the home, visit friends, see a film?   The thought of being restrained, conforming to a timetable that never varies, having to ask people for help whose names  cannot always be remembered, especially when people are engaged for a day from an agency, it would make anybody want to give up the fight.  The more so with a lack of continence support, a lack of refreshment when one feels like it, and the constant blare of television and radio and people trying to make themselves heard and understood.

‘Restraint,’ ever a threat but more a reality.   ‘Challenging behaviour’ – bring it on!

Ann Macfarlane

Always looking for the positives. 

PS: There are occasions where residential settings provide quality services, where older people are treated with respect and dignity, are listened to and requests acted upon, but the bar has to be raised.  I am the first to acknowledge where I see good practices and a willingness to learn.

PPS:  Visiting a friend in hospital yesterday, a patient got out of the armchair.  ‘Oh, I’m stiff, I’ve sat too long.’

Nurse: ’ Sit down, don’t wander off.’

Patient:  ‘It’s good to stretch one’s legs, take exercise, I was just going to look out of the window.’

Nurse:  ‘Sit down, I need to see where you are.  Don’t move.’

Assisted Dying - Airbrushed out of Society

Currently making its way through the House of Lord’s is Lord Falconer 's legal efforts to relax the existing legislation on the Assisted Dying Bill which is likely to receive a second reading in the Lords shortly.  Enough 'Yes' votes will enable it to proceed to the Commons before the summer recess and already this amendment feels like an unstoppable tide.

I have just come from a meeting of the local Disabled Peoples' Organisation where self-directed, Independent Living support was discussed.  At the end of the meeting I presented the proposed amendment to the existing Bill's legislation after which I boarded a bus. 

During the bus journey I sat in the allocated space for wheelchair users when, to my disgust, I noticed that the wheelchair symbol had a sticky note placed across it completely blocking it out.  I felt the hatred expressed in this simple action.  As a disabled person this obliteration of the sign gave a strong message that disabled people are a waste of space (literally). I felt I had been not only airbrushed out of the local community but out of society. It led to deeper feelings that if a person could so easily eradicate the symbol they could eradicate me and other areas of my life where they view disabled people as economically too costly, where disabled people are not worthy of housing, work, food, recreation, relationships or practical support.  I felt sick. It made me realise even more strongly how the extension to the existing Assisted Dying Bill will risk disabled and older people experiencing depression or worse. And this is without them having to stump up money for ever-increasing financial contributions towards their care packages in order to stay alive. 

It is known that Independent Living and a future worth living continue  to remain a pipe dream for the majority of disabled people, irrespective of age.  It is recognised that when someone is labelled ‘severely’ disabled and depression establishes itself, it is relatively easy to be coerced into thinking about ending one’s life and for media remarks such as ‘we (presumably meaning the public) cannot financially support the growing numbers of older people.’   Thoughts and messages can get compounded and it does not take long for a disabled or older person to make a decision that they may not live to reverse.  What a disabled person may think and feel one day can be totally different the next day so it is important to understand the implications of this extension to the Assisted Dying Bill.   The piece of paper covering a symbol on the bus can easily be removed, but it does not eradicate the feelings that may result in the serious decision to end one’s life.  This decision may not be so easy to change and neither will an extension to the Bill.

Go to the 'Not Dead Yet' website for information, updates and petition to the amendment on the Assisted Dying Bill. 

Yoghourt: One for all or all for one

Yoghurt: All for one or one for all!
A true encounter

Scout Master:  'Tonight when the scouts met I bought them all chocolate bars. Then I remembered one lad wouldn't be able to eat his because he's disabled and food has to be liquidised. I bought him a yoghurt. I was so pleased I thought of it as I would have hated to leave him out.'

Response:  'That was kind of you but perhaps next time you could buy all the scouts a yoghurt.'

Ann Macfarlane OBE

A Sandwich Too Many?

A Sandwich Too Many?

Early in March the public were asked to support an NHS Change Day and through the media people stated what they would do to improve health care.   There are things that the public can do and that can help to reduce the number of appointments that are wasted through non-attendance at hospitals, GP surgeries and other health-related services.  My thoughts also went to another area where waste is evident. 

There are, for instance, sometimes trays of sandwiches, platters of fruit and Danish pastries all temptingly displayed.  How many health and social care events have you attended in the last year where you have been offered lunches for which you have not paid and which have been paid for from ever decreasing budgets?  At national and local level, in both statutory health and social care settings and in the voluntary sectors, we have come to expect refreshment, not just tea, coffee, juice, water and biscuits but lunch, too.   It has become a way of life that we take for granted.

Refreshments at events and meetings are seldom, if ever, are paid for by delegates and we seldom concern ourselves with who pays for this food and what happens to all that is left over.  Occasionally people may take left-over sandwiches for a long journey homeward.   More often we leave the food for the events or meeting organisers to clear away, and we see it tipped into large black plastic bin liners, producing more environmental waste.  

And yet, elsewhere, people are hungry and thirsty.   The number of food banks opening up increases week on week. The number of lonely older people increases week on week.  Health and safety regulations forbid the passing of food on to people who are hungry, thirsty and lonely in many instances and it cannot be sold and the income used to provide much needed services.

We have become a wasteful world; most of us know that and feel there is little we can do about it. What a mindless and self-centred state we have reached in terms of our expectations.  Many people have grown up in recent years with an expectation they will be fed when in attendance at meetings.  Refreshments come from these cash poor statutory and voluntary sector budgets and seldom, if ever, is this waste identified. 

Food brings with it a feel-good factor, a scarce 'freebie' in health and social care organisations that can rarely afford to reward staff but free hospitality comes with a price tag, seldom recorded.    If that money were calculated, it could provide services currently deemed too costly.  For example, there could be more local training for volunteers to visit lonely older people, money would be available to support more social activity for people in residential settings who are bored. 

This is just one area of waste within our health and social care budgets and one reason why it often goes unacknowledged is because these organisations think of finance in terms of thousands or millions of pounds rather than how small savings made can make a huge difference.   Individual pounds add up, not just in accounts under the heading of ‘hospitality’ but around people's waistlines.

Ironically, as this blog was about to be posted, there was a health and social care event where the lunch-time sandwiches ran out! 

Ann Macfarlane OBE

March 2014

Euthanasia or Assisted Dying (amendment)

Euthanasia or Assisted Dying

This is an amendment to the article on assisted dying posted yesterday.   It states that Belgium law enables children of twelve, together with their parents, legal guardians and doctors, to have assistance to take their life if that is their decision  It is far more serious as there is no age limit in Belgium.  It is in Holland that the age limit is twelve years and over.  

Euthanasia or Assisted Dying

Euthanasia or Assisted Dying

As a child I was issued with more than one death sentence.  The most memorable and traumatic came at the age of six.  Not having seen my parents for many months, as visitors were not allowed in those days, the Ward Sister stood at the end of my bed and pronounced. 'You are going to die.  Your Mummy and Daddy are coming to see you but you mustn't tell them because you will upset them.  They're coming at 2 o'clock.'  I was all too aware of the ward clock and the time I had to try and digest what she had said before they arrived.  On arrival, Sister produced two chairs for my visitors.   Before she sat down, Mother leaned over me, kissed me and put a colouring book and box of pencils on the sheet.  I clearly remember thinking, 'I should tell her to take them home because I won't be able to use them.' but I kept that thought to myself because I didn't want to upset her and Sister would be angry with me.  She was a formidable force to be reckoned with as I had learned on other occasions. 

Belgium has just passed a law that enables children aged twelve and over, together with parents and professional individuals to take the decision to terminate life.  'Euthanasia'' or the more familiar phrase 'assisted dying,' means that children deemed terminally ill and/or disabled and perceived as having little chance of an acceptable quality of life can be killed.  Anybody seeing me in the condition I was in between the ages of four and eighteen years might also have come to that conclusion. 

Despite a growing number of countries debating the pros and cons of the issue, there is public inertia when it comes to refuting the passing of these laws and, in some countries extending criteria to cover children. Instead of being front page news euthanasia is buried deep inside the national newspapers.  Maybe people feel threatened by the fact they are continually confronted with news of diminishing resources so people who are able, currently support themselves by operating in survival mode. There may be an underlying fear that the more people who need health and social care services the greater will be the added strain on what may be perceived as a dwindling economy and thus further diminish the quality of their lives.  Could this be the cause of the inertia or disinterest?

I am well into my seventies.  I have had a quality later life having worked, travelled, enjoyed family and Church life and life in general.  I thank God that those people around me in my early years saw fit to try and give me a reasonable quality of life, despite serious illness and impairment.  Not all felt I had a life worth living and that l learned second-hand in medical settings, but some did, and I am grateful that they took that approach even in  those earlier and often darker times.  Members of the public have said to me on occasions, 'I don't know how you can live like that, I couldn't stand it,' or words to that effect.  Maybe I had less of the struggle that some youngsters have today through advanced medical and surgical treatments, but mistakes are made. Decisions that take a life cannot be retracted. While it is a highly emotive issue, and I in no way wish to minimise or underestimate the complex and confusing circumstances in which families are situated and the often agonising decisions to be made by them and those in health and social care settings, killing is not the answer.  Irrespective of all the wrestling and soul-searching, a life terminated cannot be reversed. 

Life-threatening decisions are often taken because people experience extreme pain. It is not the only issue, but there are many settings in which the knowledge, skills, and equipment to deal with pain are lacking or missing.  I do have considerable experience of intractable pain levels and I have been fortunate to eventually meet with the people who do have the knowledge, skills and experience.

  
While people have the right to make choices and decisions, many decisions are made and taken without the relevant knowledge and information, with people available who have the lived and professional experience.  There is a history of taking the lives of ill and disabled children and adults whom others have deemed fit only for experiment and ultimately untimely death. The life deemed not worth living might turn out to be a life very much worth living.  I, and others, have lived to prove it.

Ann Macfarlane
February 2014

Waiting at Waterloo Station

Sitting in a cafe on Waterloo Station watching the people and pondering on each of their final destinations is like a miracle for me but probably not for the rush hour crowd.  I still marvel that I am a part of this daily scene, made somewhat busier because of a tube strike. 
I owe it to disabled people, some known to me, others strangers and yet united as one by those things that all disabled people have experienced. Discrimination, oppression and unequal treatment all of which continue and persist brings to the fore an emotional thankfulness and gratitude towards those who fought for disabled peoples' freedom to move around on public transport.   Legislation that disabled people worked on, together with policies which we helped to create and the resulting access, were achieved and have improved the lives of all people.  Public transport is not perfect but it is a far cry from little or no access to buses, limited access to mini-cabs and taxis, and wheelchair users travelling in guards vans with chickens, fish and various unsavoury objects.  Airlines, too, have improved access for disabled people.

To experience lying in NHS beds and receiving their 'hospitality' for almost a quarter of a century can leave one 'flattened' and feeling worthless, but to be sitting here on a freezing cold February morning is a far cry from those days.. 
As I wait for the half-mile queue for taxis to subside and before I venture out again to assess if the queue has receded or lengthened, I know that when I reach the front of the queue I will have access and be able to get to my work destination like hundreds of other taxi-users today.  I would not have come to London on a tube strike day for a 'jolly.'  But still I am glad to be here because all those years ago as I lay waiting for the next surgical procedure It never occurred to me that I would be part of the ordinariness of life.  

What a gift!

Ann Macfarlane
February 2014