Carers' Stories

Into the woods..... 3 stories

'Just finished washing up. House a little quiet. Search for my husband. No sign. Go outside and ask neighbours if they have seen him. Start to be concerned. Race through woods calling his name. Now really starting to worry. Drive along tracks searching - no sign. Wait an agonising hour and contact police, who arrive an hour later. Now I am really in a state of panic. A neighbour is telling me that he will have fallen and broken a bone, another is trying to tell the police what to do! I just feel so helpless. he'll be in a state with wet or soiled trousers. He has had little to eat or drink....where is he? He was found 8 hours afterwards miles away and just before nightfall. He was perfectly happy and unconcerned, but I was a wreck!' (CW)

'The call came at 11.00pm. The Police are at your mum's house. Mum had turned up agitated on a stranger's doorstep, sobbing that a man who used to work for me has broken into my house and is holding my daughter hostage- he's going to rape her! As they didn't know her, they took it at face value and called the police, who had taken her home. There was no help available over night. I had been agonising over the need for residential care, but this was the final straw that convinced me I had no choice. I couldn't keep her safe on my own anymore' (DS)

'I knew that mum's frailty made physical activity unlikely. But there were times when her paranoia and irrational antagonism unnerved me. There were occasions, particularly at night, when she was scared to be alone with me. In those awful moments, we were not the loving mother and daughter of reality, but two strangers, locked in together' (PT)

 Sign UP - YesJennie Bond, Beth Britton and Peter Watson are carers We Support The Carers' Call to Action

Beth Britton talk about caring for her dad to www.carehome.co.uk

Unfortunately when her dad was ill, there wasn’t the help that is available now. However it is very different now and as “there are lots of immensely supportive groups and forums online and some amazing people on social media. There are more community-based support cafés and carers groups too, and my dearest wish is that these are available to everyone who needs them – we must eliminate the postcode lottery for services. There are also some great campaigns to get involved with, like the ‘DAA The Carers' Call to Action’ (www.dementiaaction.org.uk/carers), which champions the rights of carers and gives them a voice.”

follow link for full article:

www.carehome.co.uk/news/article.cfm/id/1563115/profile-dementia-campaigner-beth-britton 

Barbara Pointon's Presentation - April 2nd 2014, Great British Care Show, Norwich

Thank you for giving me an opportunity to tell you about the latest development from the Dementia Action Alliance. I cared for Malcolm, my husband who was diagnosed with Alzheimer’s at the age of 51 and he died 16 years later, as helpless as a baby......you can imagine the impact of his long drawn out deterioration on me and our family. 

To read full script please click here - Barbara Pointon Presentation carers Norwich

To watch a video of Barbara Pointon please click here -http://vimeo.com/92553156

How being a dementia carer for many years has affected my life - 

Louise Langham, Carers' Co-ordinator for CC2A shares her powerful story

Both my parents lived with dementia and after the experience of my dad passing away in a nursing home, I couldn't face the thought of mum going too. Mum was always a lively and vibrant person with many friends and an active social life. When it became obvious that she was starting to develop the early signs of dementia, I invited her to live with me so that I could look after her.

I have a small one bedroomed house, so my living room became mum's bedroom, dining room and eventually bathroom and treatment room for 10 years, with many care services passing through.  I was determined to keep things as normal as possible, encouraging friends and family to visit.  To me, mum's dementia was secondary, all I saw was my lovely mum who I wanted to look after and protect.  Despite the challenges we had many happy times living together and our similar sense of humour helped us through.  I instinctively learned to enter into her world and people often commented on our great relationship.

In the early days mum spent 2 short periods of respite in a home when I went on holiday.  The home was good and the staff very well meaning saying `you go away and have a rest, we will look after her'. However, I felt that I wasn't listened to and tried to tell them that she would wander in the night.  As I feared, she wandered into the room of a lady who was 100 years old. Staff found this 100 year old lady trying to pick mum up off the floor as she had fallen!  You can see the funny side of this, but it could have had far more serious consequences.  Both of them could have broken bones or even worse and I wish they had taken more notice of what I had said.  My concerns should have been acted on.  Mum also disliked going to a day centre when I was at work and would do anything not to be there, including pretending to be ill. So I would have to leave work to take her home where she would immediately perk up.  She had been a leading light in local amateur dramatics for many years and put her talents to very good use!

After two and a half years it became impossible to keep mum mobile.  She became permanently bed ridden and eventually totally disabled. Her care was increased to suit our needs and all respite (through Direct Payments) was catered for at home where she was happier.  We have an excellent Local Authority and in the end I had fantastic care workers as I put a lot of effort into getting on with and helping them understand my mum and her dementia.......and my mum wasn't difficult, unlike many others. I strongly feel that domiciliary care workers need more hands on dementia training as e-learning is just not good enough. Some jokingly called my house The University. I always valued and respected them for the incredibly hard job they do, but feel that they are often undervalued. 

I think we should all ask ourselves why care workers, who do such an essential job, seem to be so undervalued in terms of recruitment, training, conditions, and pay.

Caring and working eventually became too much for me so I jumped at the chance of an Early Retirement Scheme when I was 50. However, I never considered or realised the consequences of losing my key earning years and chances of future employment.  In three years of not working I lost all confidence, gained weight, and did not want to go out and meet people.  I eventually returned to work on a short term part time contract and mum's carers often commented on how much brighter I was on the days I worked.  This contract ended last year and like so many carers I found myself unemployed as a direct result of my caring role.

 I took part in Dementia UK's ‘Carers as Educators’ Project last year, a unique pilot project involving family  carers of people living with dementia.  By sharing our caring experiences with domiciliary care workers, supported by a trainer, they gained more understanding of Dementia and an insight into how family carers feel. The success of this project gave me inspiration and confidence.  So much so that I have changed career direction and formed the Community Interest Company ‘Carers Educate’ with the trainer. I now have the opportunity of future employment and can put my experience to good use.

My story sounds quite positive so far and I wouldn't have changed my decision to look after mum for the world, I still regard it as a pleasure and privilege, but looking back there was one thing missing.

That one thing was emotional support for me, especially in preparing for the inevitable. 

When you care for someone, apart from the sheer amount of physical work involved, the empathy you feel for them almost makes you become one person and I believe you start to feel what they feel because the connection becomes so strong.  Eventually this became mentally, emotionally and physically exhausting, leading to many bouts of unexplained illnesses that would often leave me incapacitated.  Various medical tests only proved that I was extremely healthy, physically at least.  Years later I received counselling which made me realise that this was emotional, probably depression taking a physical form.

I now believe strongly that carers' emotional wellbeing should become part of a regular healthcare check and carers’ assessment. This should be offered routinely to carers as many won’t ask!

Many of my decisions were based on mum's comfort and quality of life in terms of what I thought she would have wanted.  As a carer it's a heavy burden to bear knowing if you are making the right decisions for the person you care for as they often can't tell you.

I was giving palliative care for at least 7 years without realising or probably not wanting to recognise the fact at the time. I know I was given at least one piece of paper concerning end of life care, which I found too upsetting to read. I entered into my caring role very willingly and was totally committed that mum would be with me until she passed away, preferably at home, which she did.  However, I just couldn't face, discuss, or plan for the inevitable, and was totally unprepared for her death and the time leading up to it.  This left me with considerable mental and emotional problems afterwards concerning whether I made the right decisions for her.

On reflection, I would have appreciated the guidance and support of an Admiral Nurse, sharing the responsibility and decision making over the many years.  My feelings of grief would have probably been similar when mum passed away, but I think I would have been more prepared and able to cope with the trauma I felt afterwards.  I would have also been able to recognise the early signs of my own carer breakdown and the need for more emotional support. Like many other dementia carers my grief had been constant over a very long period as I continually lost the mum I once knew. I also lost too much of myself in the process and was not emotionally strong enough to cope with her final few weeks. 

I have always considered myself to be a very well balanced person, but found myself not able to work, sleep, eat properly or settle as I started to reflect on whether I had done right by mum in her final days. I ended up sobbing in the doctor's surgery and realised I just couldn't go on like this. My doctor offered help and grief counselling but I needed answers, and for me, only a dementia specialist who could understand my journey would do.

I felt that mum had been the heartbeat of the home for all those years, so when she passed away at home I was devastated, and did not want to be there in the house I had always loved.   It felt like I had lost 3 people….. my mum, a best friend, and eventually a child, as I became her mum in the end, and I couldn't bear the silence of a hospital bed not humming in my living room.  I escaped to family where I actually became the cared for the first time in many years.

An Admiral Nurse came to see me and after the first visit I was able to move back home.  Her counselling sessions made me appreciate the many positive things I had done for mum and also helped me make sense of the negative aspects of her final few weeks that I had been feeling. 

Having specialist dementia counselling in the comfort of my own home, where my care journey began and sadly ended, helped my recovery and wellbeing.  It also made me reflect and make sense on how caring, not only for my mum but also my dad for many years had affected me. 

Without this specialist help from an Admiral Nurse I feel I may have become a burden on health services.  Like so many carers I thought I was okay, obviously I wasn't, and still recall saying many times that I wish I had asked for help earlier.  Most carers become so engrossed in their caring role that they only focus on the needs of their cared for, never recognising or addressing their own emotional needs.

You become a different person when you are caring, almost losing yourself, and it takes a long time to reclaim your identity. My experience was largely positive, and in many ways a pleasure, but I still had problems. There are many carers who are older, coping with other family commitments, dealing with more challenging behaviour, and with less support than I received.  How do they manage? And what can be done to make their lives less stressful?  

As carers we all need support and guidance from both health and social care on our often long journey caring for someone with dementia.  My journey was long, over 15 years, and I became an expert carer in many things, except perhaps the most important thing of all......caring for myself.  (LL)

Let's Get Real - Ming Ho 

www.dementiajustaintsexy.blogspot.co.uk 

Readers may have noticed that I haven’t updated my blog in recent months.  There are two main reasons: firstly, I’m aware that many whose lives are touched by dementia are looking for uplifting, or at least reassuring, stories; my mother’s condition has progressed to a stage where I feel I cannot be that Pollyanna and do not wish to discourage others. Secondly, dementia has already taken so much of my life - practically, emotionally, and financially - that I now have to focus on rebuilding an involuntarily neglected career. 

But this week I read something that so incensed me, I just had to respond.  It was this interview given by Minister of State for Justice, Simon Hughes:
Britain Should Learn From Asian and African Immigrants About Caring for the Elderly

Now I do acknowledge that media reports sometimes take comments out of context or misrepresent tone or intention.  I cite the piece with those caveats.  But if this is a fair summary of Simon Hughes’ message, I take issue with its assumptions. 

His basic contention seems to be that elderly people in residential care have all been “forced” there by callous relatives who lack a sense of responsibility, “obligation” or “sacrifice”; and that those who live alone and/or seek state support for their needs are wilfully “neglected” by society or by family “who you would have thought would care”. 
Furthermore, he holds up the wearisomely familiar example of idealised “Asian or African” families, who, he contends, have a superior culture of caring for their elderly “to the end”.  (I shall address these points below.)
It may be that these are his genuine, personal views; in which case we may consider him ill-informed, but not malign.  But let’s not be disingenuous.  He is a government minister.  And government continues to wrestle with the problem of how to fund adequate  - never mind good – care for a population that increasingly lives into very old age with a variety of high dependency needs.  If families can be persuaded (or guilt-tripped) into shouldering more of the burden, the thinking evidently goes, the state can shell out less.

But do those who posit this neat fiscal logic really understand what they are asking – and of whom? 

In the last year or so, we have been treated to a similar sermon from both Jeremy Hunt (Secretary of State for Health) and Norman Lamb (Minister of State for Care and Support).  I am frankly sick of usually male politicians sanctimoniously preaching self-sacrifice without remotely practicing it themselves or acknowledging the true cost for those who have no choice.  Time to take off those rose-tinted specs. 

For we cannot assume a cosy set-up of extended family who live in the same few streets and can pop in to mum’s with a casserole of an evening or help granddad mow the lawn while granny baby-sits the kids.  For one thing, families tend to be smaller now.  I am myself the only child of an only child and have no children of my own to care for me in the future. 
And in today’s society, people often have to move hundreds of miles away from hometowns in their youth to study or find work, as I did; however much we may love our relatives, caring for them in old age may well involve one or other party uprooting at a stressful time of life, leaving home, job, hard-won income and support network behind.
Otherwise the relentless and exhausting shuttle of long-distance travel, coupled with round-the-clock phone calls and emails to arrange care, liaise with professionals the carer can never meet face-to-face in office hours, and manage an escalating litany of crises.

If we explore the live-in option, not everyone has a house big enough to welcome a dependent relative or carer, which can involve the cost and upheaval of building an extension, modifying an existing home, or both parties selling up to purchase a new property or going on a local authority waiting list to be rehoused. (Perhaps this doesn’t occur to politicians who have two or more properties at their disposal, funded at the taxpayer’s expense…) 

That’s assuming that both parties are agreeable to the arrangement in the first place and can sustain it over a number of years. The ideal of multi-generational living, as exemplified by those notional Asian families, is all very well in theory; but, apart from the practical challenges, sharing a home 24/7 when you have been used to your own space and privacy can put a huge strain on relationships. And not all elderly people themselves want to surrender their independence to move in with relatives whom they may see as controlling or whose busy lifestyle is stressful to them.

Crucially, I would suggest it is still women who most often have to be the main facilitators of family care and shoulder the greatest daily and long-term burden – not just looking after their own parents and children, but often in-laws, aunts and uncles too. That’s how the fabled Asian and African families traditionally manage – by keeping women at home to attend to everyone else’s needs.  And in the 21st century, they too may have to hold down a job outside the home as well to make ends meet.  (For a female perspective on the reality for Asian carers, see my friend Manjit Nijjar's story and the BAME dementia research of Dr Karan Jutlla.)

Many would say they do this out of love, not “obligation”; but don’t men love too?  As I have noted in my previous post, Social Care: A Women's Issue, there are of course male carers of spouses and parents who act with equal devotion, but it’s relatively uncommon for men to take this on as sole responsibility if there is a female relative to hand, just as it remains a minority of men who choose to be primary carers of children.

Even where men and women share responsibility for an elderly relative, it is more usually the woman who withdraws from her career, either taking on a part-time post that offers more flexible hours or giving up paid work completely when care demands a round-the-clock presence. 
Which brings me to the other main issue.  What does Simon Hughes imagine “care” to be?  I have touched on this in my earlier post, Social Care Is Not A Lifestyle Choice, but it continues to frustrate me that policy-makers remain largely ignorant of the reality.  So I’ll spell it out here.

Yes, a loving family can adjust its routine without too much upheaval to help a frail elderly person to shop, cook, clean, have some company, and get out and about.  If that were the extent of the “sacrifice”, we would not have much of a problem. 

But in previous generations, average life expectancy was no more than early to mid 70s. (That was the basis of pension and National Insurance contributions.)  People died of acute illness before they became routinely dependent on others.  Today, life expectancy has risen by a decade and climbing; advances in medicine and technology keep the body going, but not necessarily the mind. 

80% of people in residential care have some form of dementia (Alzheimer's Society UK statistics); that’s why they are there.  Not generally through the selfishness or indolence of relatives who can’t be bothered to make some small sacrifice, but because their practical needs and behaviours have progressed – often over very many harrowing years – to an extremity where even the most loving of family carers can no longer cope.

The main distinguishing feature that can set dementia apart from other forms of frailty is lack of insight. Many people with symptoms disruptive to their independence never receive diagnosis (or receive it much too late), because they simply don’t recognise or accept their degenerating capacity and may be antagonistic to the expressed concerns of others; and without diagnosis or at least acknowledgement of the problem, external support is very difficult to access. 

Thus a person may get into considerable difficulties over a very long period of time, with family, friends, and professionals desperately doing their best to fire-fight with no co-operation, until some major crisis finally precipitates the dreaded decision to consider residential care. This is the situation I faced with my mum: The Crisis We All Dread.
For dementia is not just a bit of “memory loss”.  It’s a syndrome of progressive, cognitivedisorders that can escalate to consume every daily function of a person’s life.

In my mum’s case, it began more than twenty years ago, when bereavement triggered separation anxiety and disproportionate emotional responses to certain situations; then came gradual short-term memory loss, leading to repetition of conversation and confusion over appointments and events. Her ability to manage money and admin became compromised, with PIN numbers and passwords a particular challenge; household tasks fell by the wayside due to lack of concentration and declining grasp of everyday technology such as washing machine, cooker, and hoover. 

Even so, I managed much of this myself for many years and could have arranged further domestic support.  But mum was unable to acknowledge her deteriorating capacity and vehemently denied needing any help at all.  She could not recognise the extent to which I was effectively running her life and would not accept external agency to spread the load. 

A series of physical crises – falls and fractures – escalated her decline, and cognitive symptoms came to the fore: loss of capacity to interpret instructions and reminders and of motor skills to manage food packaging and household tools; compromised spatial awareness and mobility; inability to decode social signals and understand boundaries; and most of all, paranoia – a pervasive, unfocused dread that caused distressing personality change, irrational outbursts of antagonism and unwarranted suspicion that often obstructed attempts to care.
Not Just Memory Problems
Paranoia - And The Other Fear That Dare Not Speak Its Name

In recent years, mum became unable to understand the difference between an ansaphone message and a live person speaking, leading to distress at being “snubbed” by friends and relatives who were merely out; her short-term memory loss developed to a state of being unable to remember the previous sentence of a conversation, or an incident one minute ago. 

To her, a person out of sight might just as well have been absent for a year than the actual two minutes they had been in the kitchen putting the kettle on or upstairs in the loo. Hence a constant feeling of abandonment, resulting in the need to have someone in sight or on the end of the phone at all times.  She could not be left alone for even five minutes in a public place (for instance to park the car) and increasingly not even at home. 

Previously very fastidious, she came to neglect her personal hygiene and reject all efforts to help.  Despite a fridge stocked with foods requiring little or no preparation, she stopped feeding herself because even the memory that there was food available and the understanding of what to do with it could not be retained.  She could no longer manage her own medication from a pill-counter with each day clearly marked, because she could not interpret it; and if I were there to administer medication myself, she would argue black and blue that she had already taken it and refuse to accept evidence to the contrary.

Finally, she stopped recognising her own home, even forgetting which was her own bedroom (where she had slept for 40 years), and started obsessively packing random belongings to flee and wandering out in distress, sometimes at night, often leaving the door wide open and her handbag on display. 

By this stage – two decades after the first emerging symptoms of dementia - I knew I could no longer keep her safe and well on my own 24 hours a day.  I too was at breaking point and had no option but to arrange a residential care place for her.  This was an absolute last resort that I had done everything in my power to avoid; but it has saved mum’s life - and possibly mine as well.

Now she has moved on to the nursing unit in the same home.  A visiting friend asked me why, as in her eyes mum looked much the same as in recent months.  But her increasing frailties are not always visible to the casual observer. 

The nursing unit, I explained, is not just about medical care; the staffing levels are double those in the residential wing.  It takes two staff to lift each resident safely in and out of their chairs and beds several times a day with a mechanical hoist, to attend to their personal hygiene and keep them mobile to some extent. Residents at this stage may need physical help to eat and drink, to dress and undress – again, very labour-intensive.  And principally there is continence. 

Most residents in the nursing unit are doubly incontinent.  People who have not encountered this probably don’t realise that in dementia it is not just about losing physical control of bodily functions, but loss of capacity to understand what to do, and what is socially appropriate.  To be explicit: carers may have to contend with faeces smeared on walls, on clothes and in hair, or parcelled up and hidden among clean clothes in drawers, in vases, or biscuit tins. There are complex psychological reasons why a person cannot help this behaviour, which is logical to them; but it is undeniably hard for others to manage, particularly a sole family carer in a domestic setting. This, I would suggest, is probably the main determinant of residential care – the other being aggression.

The cocktail of symptoms varies with each individual and many won’t be aggressive at all.  But for those who are (more usually, but not exclusively, men), behaviour can be totally out of character, frightening and sometimes dangerous.  In mum’s unit, I have witnessed an otherwise benign and pitifully frail old man suddenly come out with a tirade of foul abuse at the gentle young nurse in charge, simply for attempting to take him to the toilet for his own health. She copes with it, because it is her job and she can maintain a degree of emotional detachment; but on a human level, one cannot help but be shocked.  How much more upsetting, if it’s your nearest and dearest to whom you have devoted your life, who is treating you in this way?

In the same unit, I was also present for the birthday of a female resident, who is now unable to sit upright or to speak.  She spends her days in a special reclining wheelchair. Nevertheless, she was clean and neatly dressed with nicely-styled hair; kitchen staff had baked her a beautiful cake with a candle and her name iced on it (as they do for all the residents); the carers made a ceremony of the occasion, and we all sang happy birthday before sharing the celebratory tea. I was moved to tears by the simple kindness of the staff and the tender devotion of the lady’s elderly husband, who sat holding her hand for an hour, despite her inability to acknowledge his presence.  I can well imagine the lonely years of anguish that had led him to this point – I’ve been there too and will continue on the same path.

If Simon Hughes knew this, would he still say that man and I – and all the other families who have a relative in care – lack a sense of “obligation” or “sacrifice”?  That we don’t care?
On top of this emotional trauma and loss of our shared past, mum and I (like many others) have lost our family home to care costs – already over £120,000 for two and a half years and counting. 

Twenty-odd years ago, I was an Oxford contemporary of Simon Hughes’ ministerial colleagues, David Cameron and Michael Gove (indeed I read English with the latter). Back then, my future looked as bright as theirs. I established a successful career in TV drama; but after a decade of missed work opportunities and life chances, attending to mum’s needs, I find myself single, childless, and with virtually no savings, having to start again.  But perhaps I have not sacrificed enough…?

I have met and corresponded with numerous others who have shared a similar heart-breaking experience. There are no doubt some people who shirk responsibility and put themselves first – just as there are benefit cheats, multi-national corporations that don’t pay tax, and politicians who fiddle their expenses… 

But don’t tar us all with the same brush. I have yet to encounter one person who has willingly placed their relative in residential care for selfish or feckless reasons and merrily continued with his or her own life unscathed. 

The bottom line is that the economics of care funding, based on continuous employment until 60 or 65 and death from acute illness at 75, no longer stack up.  Government has not yet found a solution to the vast expansion of need, set against contraction of resources.  To an extent, it’s not party political.  Opinions may differ on how to cut the cake, but no-one is offering more cake.  It’s a question of priorities. 
So get real, politicians: have the honesty to say, “we will not fund your care”.  But don’t pretend that it’s families (mostly women) who can’t be bothered to look after their own. If there is a moral failure here, I can assure you it’s not ours. (MH)

Ming Ho (Dementia Just Ain't) Sexy: Not the Beige Cardigan and presentation from The Alzheimer's Show London May 16th.

Please click on link below

DAACC2A ALZHEIMER S SHOW PRESENTATION BLOG EDIT MH

Presentations from The Alzheimer's Show London

Ray Carver: 

yes my name is Ray. The prevalence and magnitude of the impact of dementia is by now well rehearsed so I have no facts and figures to reiterate to you but rather to take this opportunity to share with you my experience as a carer to illustrate some of the realities behind the numbers.

To read the full presentation - click on this link - Ray s speech Final carer version

Frank Arrojo:

OVER THE NEXT FEW MINUTES I AM GOING TO TELL YOU A BIT ABOUT MY STORY – HOW I CARED FOR MUM FOR SOME 20 YEARS – WHO HAD VASCULAR DEMENTIA . AT THE SAME TIME I AM ALSO GOING TO TALK ABOUT AN IMPORTANT DEVELOPMENT THAT HAS ARISEN FROM THE DEMENTIA ACTION ALLIANCE "THE CARERS CALL TO ACTION": "SUPPORTING THE NEEDS AND RIGHTS OF FAMILY CARERS OF PEOPLE LIVING WITH DEMENTIA" AND WHY WE NEED YOUR SUPPORT. BUT SOME OF YOU MAY BE ASKING "WHY SHOULD WE SUPPORT THE NEEDS OF FAMILY CARERS ?" "WHAT IMPACT DO FAMILY CARERS HAVE ON PEOPLE LIVING WITH DEMENTIA ?"

To read the full presentation - click on this link - Frank Arrojo Alz Show Presentation Speech 2

photo  6 .JPG Frank