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There is always someone behind Dementia

Dementia

The following is an extract from ‘The Dementia Whisperer’ by Agnes B. Juhasz, which looks at the importance of a ‘person-centred’ approach in dementia care and how to understand the person hidden behind the condition of dementia.

There is a personality in every single human being, an absolutely unique code and pattern built up over a lifetime, and the way to understanding the person hidden behind the condition of dementia must not be blocked by obstacles such as language differences, communication problems, short-term memory loss or other physical and mental causes. This is the fundamental aim of the person-centred
care model I have always used – to help overcome these obstacles while finding out what the person with dementia really needs and what he or she really want. That is why the person must be taken into account first, before the disease.

I cannot emphasise too strongly the importance of the person-centred approach in dementia care. Taking each affected person as an individual, carers must start to learn their life history, habits, hobbies, fears, things they are proud of and all the tiny elements that make them happy or sad. They must get to know the subjective world of dementia, the world of the forever ‘I don’t know’. Carers must try to make contact with the personality that is hidden behind the barricades and search for an indirect connection while constantly checking on the physical needs of each person in their care, ensuring their comfort and doing their best to make them feel at home and safe. It is not good enough only to hear what people with dementia say; carers must let the words reach their innermost minds, if not their souls, if they really want to understand what dementia sufferers are trying to communicate.

Efforts to make a connection with a person with this condition will be much more effective if these guiding principles are kept in mind. In this way, carers can build up a kind of ‘special manual’ that quickly provides the answers to questions about the whys of seemingly odd or
annoying behaviour patterns.

If somebody desperately wants to go ‘home’, insisting that where they are is not the place where they belong, such behaviour can be
understood as communicating the fact that they do not feel safe or comfortable at that moment for a variety of reasons, and that they want
to go somewhere where they will feel reassured.

If the individual keeps saying they must go to work, even though they have been retired for years, it can mean they yearn to be useful and
busy again, and are feeling bored, worthless and useless.

If a person with dementia is looking for a wife or husband who died years earlier, it might highlight an individual’s lack of company and
need for emotional support.

Speaking this unique ‘language’ helps carers not only to understand different situations but means that they can also be the rock on which these people can rely and trust.

During my time working with Sylvia, I have noticed that it has become an involuntary habit of mine to speak to her more slowly and with more articulation than I usually do with other people. She speaks clearly and deliberately, perhaps because of her background in languages, and at first I think I copied her, which incidentally was very good for my English. Now, I believe that my speaking slowly has the added benefit of giving her the chance to think during the conversation and the time to find and select the right words to express as clearly as possible what she really means or wants to say. I also always take care to eliminate every possible barrier or extraneous noise from our verbal connection.

When Sylvia is watching TV, she usually has the volume up high because of her hearing impairment. Although she has got hearing aids, she prefers not to wear them at home, especially when she is watching television, as they make not only the speech but also the background noise far too loud. Naturally there are moments when she wants to say something during a Poirot or Miss Marple episode, and I always automatically turn the volume down immediately to get rid of a very disturbing communication barrier.

In verbal communication I have learnt never to switch topics quickly as people suffering from dementia are unable to follow quick changes of idea. If I have asked a question and I realise that Sylvia’s response has nothing to do with the question asked, or she says something totally incoherent, I try to rephrase what I have just asked or said, and that usually solves the problem.

[…]

Reminiscence therapy is a crucial part of dementia care work. This person-centred approach concentrates on the personal life history and
the most pleasant memories and occasions of the life of a person with the condition. Recalling personal experiences and skills that the person used to have, while showing a lot of love and interest, provides very strong support to the current mental state so that the mind can function at its maximum. If a person’s mental and emotional states are well balanced, they have a positive effect on the person’s physical health too.

‘The Dementia Whisperer’ by Agnes B. Juhasz is based around real-life stories and provides insights into what she has found works and does not work, and candidly reveals her own emotions of frustration, irritation and – sometimes – amusement, and how she has learnt to cope with these.

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Difficult Conversations about End of Life

Author of upcoming book ‘Dodging Dementia: Understanding MCI and other risk factors: Second edition of The Essential Guide to Avoiding Dementia’ Mary Jordan has written the following blog which provides insightful support on the difficult conversations surrounding end of life. Her newest book will be available on Hammersmith Health Books and other online vendors in September!

A diagnosis of dementia is an opportunity to come face to face with our own mortality – and that of those we love. It may not be an opportunity everyone wants to embrace but in some ways this diagnosis gives us all a chance to accept our mortality and, if desired, to plan for how we would like our own end of life to be. Carers have told me that although they found the subject difficult to face, they have often been strengthened by the experience of considering their own end and have achieved some measure of peace from doing so.

Understanding the end-of-life wishes of someone with dementia

Establishing end-of-life wishes can be a very important part of caring. Even if discussing these matters after diagnosis is difficult, carers can at least be sure that they are doing an important and loving thing. It can be very difficult for people with dementia to make their wishes known. An important factor in dementia is the loss of the ability to foresee or understand the consequences of one’s actions or even to think clearly about the future. People with dementia have a tendency to exist ‘in the now’ and may find it very difficult to engage in discussion about a theoretical future. This means that effort to establish feelings about the end of life may have to be inferred.

It is important not to transfer our own feelings onto the person we are caring for. Just because we may feel that we would ‘rather be dead than demented’, this may not be how a person with dementia feels. We should listen to the way someone talks rather than trying to use direct questions. People with dementia may use expressions such as: ‘It’s awful’ or ‘There is nothing left’ or ‘I’m angry’ when asked how they are and this can be indicative. Others will answer ‘I’m fine’ or ‘I feel Ok’ or ‘Very well’ to the same question.

Reality vs. our preferences – the value of making a plan

Unfortunately, the final days of life often come in an unexpected manner. We would all like to imagine a final peaceful ‘drawing to a close’ of life, perhaps surrounded by loved ones, well cared for and pain free. The actualities can be quite different. Perhaps a fall or an infection is followed by an emergency admission to hospital and a fast deterioration. Sometimes residential care homes are so worried about possible accusations of neglect or mismanagement that residents at the end of their life are admitted to hospital instead of being cared for in the surroundings they are used to. There may not be time to consider wishes and advanced plans in these circumstances but remember that where these have been discussed and recorded it is more likely that they will be adhered to. Hospitals are generally bad places to die (they are designed to care for and cure) and privacy and peace and calm are rarely obtained there. Nevertheless, my experience is that families who have discussed end of life and who have planned and considered ahead often feel more comfortable about events leading up to death even if things have not turned out the way they planned.

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Spreading the word about Carers

The following blog is by Sara Challice, award-winning author of ‘Who Cares? – How to care for yourself whilst caring for a loved one.’

Have you heard of Health and Wellbeing boards? No, I hadn’t either, until I was asked to be on one a few years ago to represent carers within my borough of Richmond.

There are 153 Health and Wellbeing boards across the country, and their purpose is to establish collaborative decision making, planning and commissioning across councils and the NHS, informed by the views of patients, people who use services and other partners.

At present, I believe I am the only one on one of these boards, but we need a Carer Representative on every board – to ensure carers are represented across the UK, and are considered and supported within the various upcoming papers and proposals. Because if there is a paper on residents living with long-term health conditions, you can guarantee there will be a carer behind the scenes supporting them – but carers can often still be overlooked.

Please do get in touch with your local council and ask your Health and Wellbeing board if they have a Carer Representative.

Supporting Working Carers

Did you know 600 working carers quit every day due to the insufficient support? And inadequate support for working carers costs UK businesses £8.2bn every year.

But there is a better way.

Businesses Virgin Media O2 and Sainsburys recognise carers in their workplace need support, and I give online sessions supporting staff caring for loved ones. Often given during lunchtime hours, these invaluable sessions allow space for carers to learn self care tips, insight and psychology to help them become more resilient and regain balance, whilst juggling work with caring. These sessions can also include their line manager, so there is a learned experience for all, creating a supportive collaboration within the workplace, allowing for better communication.

Sharing Learned Experiences

Have you heard of Caregivers Burnout, the Helper’s High or Compassion Fatigue?

This invaluable insight, and much more, is shared in my sessions to support those caring for loved ones. Whilst engaging carers, I share stories and tips to help improve their health and wellbeing, and each session focusses on a particular topic, helping them gain clarity on all that is happening to and around them, whilst they take back control and find ways to enjoy their lives again – guilt free.

Of recent, carers have been asking for a session on, ‘Preparing for life after caring,’ because often, we just never know when our caring role may suddenly come to an end.

What can carers expect, and what steps can they put in place now to safeguard their own needs for when this big life event occurs? In this particular session, I share my own experience during my transitions once my caring role had come to an end, and I share insight and strategies to help carers with their transition, creating resilience whilst boosting their own health & wellbeing.

“I so could have done with this information. It would have made life so much easier!” – says Sara

Finally, Sara is giving a keynote speech in London for Carers First, a charity supporting carers over a number of counties. In sharing insight and knowledge, the event brings together trustees, staff and volunteers to collaborate, celebrate and plan for the future.

“Sara has delivered many online sessions for Carers UK, and we were delighted when she ran a series of Wisdom to Empower sessions for us, which were some of our highest attended online meet ups of the year.  The sessions were highly valued by the carers, providing them with vital support during one of the most challenging times of their lives. Sara shared lots of tips and insight to help them gain the clarity to make positive changes in their lives and maintain wellbeing – not only for themselves, but for those they care for.” – Michael Shann, Head of Membership and Volunteering, Carers UK

Read the first chapter of ‘Who Cares?’ for free here and to get in touch with Sara to learn more about her engaging sessions for carers, please email sara@whocares4carers.com, or to learn more of her expert information, advice and support, transforming the lives of carers, go to www.whocares4carers.com

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Clinical studies in minors: The largest abuse in medical research since the Tuskegee trial

Blog post written by Dr Klaus Rose, author of ‘Blind Trust’, now officially launched.

 

My new book, Blind Trust, deals with a topic that many in the health and pharmaceutical world would prefer to ignore and many journalists have proved nervous about covering. Which is why I would like to reach out directly with this blog post and tell you a bit about it and why so many find this topic uncomfortable. If you have a sick child, if you raise money for a paediatric charity or for paediatric research, if you are a doctor seeing child, and especially adolescent, patients, you need to know what is in my book.

The picture on the cover is an old illustration of the fairy story, Hansel and Gretel. These children, abandoned in the forest and starving – a metaphor in my book for being desperately ill – come across a house made of ginger bread and other treats and can’t resist eating it; the temptation is too great. The owner of the house is an old woman who seems friendly and welcoming (she represents the authorities running and sanctioning unnecessary research to boost their careers), but we, familiar with the story, know her sugary house is to tempt children in so she can exploit them. Just as you know the story of Hansel and Gretel, I would like you to know the many stories in Blind Trust so that you can be on your guard in these situations too.

The background is laudable enough. Clinical studies evolved with modern drug development. When penicillin was first produced industrially, during World War II, complicated studies were unnecessary as the benefits were so clear – patients with bacterial infections were literally snatched from their deathbeds by this new drug. The development of new pharmaceuticals then accelerated, and the range of treatable  conditions expanded to include pain, insomnia, diabetes, birth control and much more. At this time, a German company developed and marketed a drug whose name is probably familiar – thalidomide – for all sorts of ailments but including insomnia, nervousness and nausea in pregnancy. In the late 1950s, it was discovered that it had caused thousands of severe birth defects worldwide. This became a turning point in drug development. From 1962 on, US law demanded studies for all new drugs.

Separately, back in the 1950s, toxicities had been reported in babies, and especially premature babies, treated with antibiotics. To avoid lawsuits for damages in the litigious US, pharmaceutical companies began including ‘pediatric warnings’ with information about their products. This, in turn, led to the idea that all children were ‘therapeutic orphans’ though they were being successfully treated for an increasing range of problems, including many cancers.

Legitimate concerns for babies became the narrative that all drugs were dangerous in all children if not tested separately, based on the concept that ‘children are not small adults’. This mantra invaded medicine, science and politics. Confidence in science was high. US lawmakers decided to reward pediatric pharmaceutical studies by extending drug patents. Companies could sell drugs longer at a higher price if they funded research. And here the big challenge began.

No need to be a doctor to know that 15-year-old teenagers who are bigger and stronger than mom or dad are physically mature. No need to be a shrink to know that emotional and mental development usually lags behind. The FDA defined ‘children’ first as being below 17; today the cut off is below 18 years. But drugs treat the body, not the legal status. ‘Pediatric’ studies in minors, including physically mature adolescents, became big business for researchers. All scientists complain about a lack of funds. For ‘pediatric’ research, a bonanza started. It became worse when the European Union (EU) expanded the obligation for ‘pediatric’ studies in Europe. Yet many of these studies were futile in adolescents and massively exaggerated in young children. Minors don’t remain as vulnerable as newborns until they come of age. Today, thousands of questionable ‘pediatric’ studies are being performed worldwide with the young people participating, and their parents, sadly assuming they are contributing both to their own chances of recovery and to the future health of others. The reality is, many may be receiving placebo treatments to satisfy the regulatory authorities when it is already clear what active treatments are safe and effective.

The opinion that most pharmaceutical studies in children and young people are excessive is not shared by most medical and  pharmaceutical professionals worldwide. In fact, I am one of very few. But I know what I am talking about. I am a medical doctor and was global head of pediatric drug development at two large international pharma companies. I am independent now, and can publish papers and write books about this challenge. In this position I can say categorically that the definition of children as under 18 is a legal, not a medical one. There are no drugs that work in adults but not in children. Kids are not another species. The focus of research in children who are not physically mature should be dosage and safety, not efficacy that is already known. A further issue is drug toxicity in babies. Dosage studies and safety observations are much less demanding, expensive and testing for participants than complex international ‘pediatric’ studies that repeat in young people before their 18th birthday what we already know to be the case after they turn 18.  Studies in minors can save lives, or can harm. Blind Trust shows you how to tell the difference. I also offer online seminars for pharmaceutical companies in which I explain how to push back against potentially harmful studies demanded by the FDA and the European Medicines Agency (EMA) so that research funding can be focused where it will genuinely make a difference.

 

To  read the first chapter of Blind Trust for free, click here.

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Kindness within the Community

As it is the season for giving, caring and community, we want to celebrate all the kind things our wonderful authors do, not just at Christmas, but all year round. In our latest blog post, a selection of our authors tell us about the incredible organisations they work with to encourage you to spread kindness this Christmas.

Sara Challice – Author of ‘Who Cares?’

Whilst I cared for my husband, I found great support in the community from local charities offering a variety of services – for both of us.

One charity, INS (Integrated Neurological Services), based in Twickenham, not only gave my husband, Neal, one-to-one physiotherapy, which was a Godsend due to his waning mobility and falls, but they supported me as a carer. I realised how vital local charities were and within six months I had become a trustee on their board – offering my graphic design skills, along with giving a carer’s insight to improve services.

It didn’t stop there. The charity continued to give to me in return, as I gave to it. I learned many things, not just about the charity, but of supporting those with neurological conditions.

During this time, I joined their Mind Body Spirit group, enjoying the meditations and learning of books to empower and improve health and wellbeing. Five years on, I now take this group myself, having become a mindfulness instructor. There is always a great turnout to this supportive and nurturing group, discovering ways to help yourself, even if you have a neurological condition, such as Parkinson’s, Multiple Sclerosis, stroke, or if you are a carer.

As with Christmas time – it is in the giving that we receive – and similarly, after I received from this wonderful charity, I have been giving to it, and still continue to reap the benefits. Kindness is truly all-encompassing.

 

Dr Eugene Kongnyuy – Author of ‘No Pills, No Needles’

The United Nations Population Fund (UNFPA) is the lead UN agency for sexual and reproductive health and rights. In the past 12 months, my work with UNFPA involved supporting fragile health systems in Mali and the Democratic Republic of Congo (DRC) to enhance access to contraceptives, skilled birth delivery and assistance to survivors of gender-based violence.

File:UNFPA logo.svg - Wikimedia CommonsBoth countries are affected by humanitarian crisis and the health systems are very fragile and weak. Due to the high level of insecurity caused by non-state armed groups, transporting contraceptives, medicines, medical supplies and equipment to reach the last mile is a major challenge. The weak health systems were equally hit by the Covid-19 pandemic, epidemics (including Ebola in the DRC) and natural disasters (including the Nyiragongo volcanic eruption in the DRC).

Despite these challenges, my colleagues and I successfully reached millions of women with contraceptives in both countries. We also supported in-country contraceptive logistics (warehousing, distribution and inventory management) and trained healthcare providers on contraceptive counselling and provision.

We also renovated and equipped maternities and where no health maternities existed, we installed prefabricated maternities to enhance access to skilled birth attendance. We recruited midwives where there were no midwives to ensure that each maternity provides skilled birth delivery. We equally supported midwifery training schools by updating their training curricula to meet international standards, trained midwifery tutors and provided training equipment to midwifery schools. While obstetric fistula has virtually been eliminated in developed countries, thousands of women and girls develop fistula in Africa due to lack of skilled assistance at birth. In both countries, we supported obstetric fistula repair by providing surgical repair kits and training doctors to repair fistula.

Due to the humanitarian crisis, gender-based violence is a big problem in both countries and is sometimes used as a weapon of war. The violence takes several forms including sexual, physical, emotional, economical, domestic etc. Our job was to provide assistance to survivors of violence and to ensure safeguarding for women and girls affected by crisis. We set up one-stop centres in hospitals to provide comprehensive services for survivors – medical, psychosocial, judiciary, police and socioeconomic reintegration. The one-stop centres ensure that survivors do not need to be referred elsewhere as they receive all services including access to the police and a lawyer in a single centre.

While responding to the immediate humanitarian needs, my work also involved working closely with the Government to build national capacity and systems including policies so that the Government can eventually take over – we recognize that it’s the primary responsibility of Governments to provide the basic social services and to respect, protect and fulfil the human rights of its citizens.

 

Sarah Russell – Author of ‘The Bowel Cancer Recovery Toolkit’

One of the things I do in terms of community and ‘giving back’ is the work I’ve been doing with my local hospice. I’ve volunteered with Hospice in the Weald for 4 years as an exercise specialist and work with the physio and OT team. I run exercise groups for palliative patients under hospice care and since the beginning of the pandemic I’ve been doing them on zoom. Which has worked brilliantly as people have been at home and needing to shield and keep themselves safe, but we’ve still been able to keep them active and mobile.

People often wonder how exercise can help palliative patients, and if it’s really safe.. but the benefits are amazing. It helps people to stay strong, mobile and independent for longer, in some cases extending life. But the most important aspect is that people feel they have a little bit of control over their lives, they are doing something to help themselves, even when they are really unwell. For that short time when doing their exercise class they don’t feel like a patient, and it gives them positivity and encouragement and a little bit of normality. It really is wonderful that we can give that to people through the power of exercise, even at the end of their lives.

 

Sandra Hood – Author of ‘Feeding Your Vegan Child’

In 2020 I took on Pixie who was an ex-street dog from Macedonia. Due to her nervousness and Houdini abilities, Pixie had had a number of homes in the UK before finding her way to Love Underdogs.  Love Underdogs is a charity that does amazing work with stray unwanted street dogs, mainly from Romania, and took Pixie on to find her a home.

I had a dog flap fitted and the garden was, I believed, escape proof. After having Pixie for a couple of weeks, I had to go into work early in the morning. My phone was switched off at work but when I checked it at lunch time there were numerous messages. Pixie had been found, some 11 miles away. She was eventually trapped in a driveway.  The police took her in, got details from her ID tag and contacted Love Underdogs and me.

When I collected Pixie she was absolutely exhausted and very pleased to see me. It was only the next day that a neighbour told me he had seen her jump out of the upstairs bedroom window to chase my car. Someone submitted the story to the paper and she made page 3!

Love Underdogs needs to be recognised for its wonderful work.

I would also like to mention Goole RSPCA Cats which I support. My sister and niece are volunteers for the charity and they do amazing work with rescuing cats that can be in terrible states. For example, my niece Georgina fostered Marigold in December last year, a cat that was found in a field, severely underweight, one-eyed and with a distinctive crinkled ear. Most likely abandoned due to her pitiful state, she wasn’t expected to make Christmas last year as she was so ill.  No one has been interested in giving Marigold a permanent home, so now Georgina is going to adopt her.

 

Dr Raymond Perrin – Author of The Perrin Technique 2nd Edition and The Concise Perrin Technique

This is the story of how the research that led to my doctorate and then to my book The Perrin Technique came about – with a little help from above…

Medical research comes with a hefty price tag even for relatively small projects, so when I embarked on my research project at the University of Salford in the early 1990s, I needed to establish the FORME charitable trust in order to attract other trusts to donate the £100,000 needed to test if my osteopathic techniques could help ME/CFS. We appealed widely through the media but to no avail. We had a few thousand pounds – enough to buy a computer or two but not to run a controlled clinical trial involving at least 60 participants. So, the trustees of the charity decided to hold an emergency meeting to discuss closing down the charity and donating our meagre funds to a national ME Fund for Osteopathic Research into ME - FORME charity, ending my dream of undertaking this research.

The meeting was scheduled for a Thursday evening but just two days before I received a phone call that was to change everything. It was from a Mr Barclay who said he had read about our appeal and wanted to know if he and his brother could meet me at his hotel. When I inquired where his hotel was he replied Monte Carlo! Two days later I was sitting with Frederick and David Barclay in the Mirabeau in Monaco, one of the many hotels that they owned around the world. They wrote a cheque then and there for £50,000 and said the rest would be sent in a few months. An hour later I was heading for my flight home at the same time as the trustees were meeting to disband the charity – a meeting I interrupted to tell them of the Barclays’ generosity to the surprise of all.

Thirty years on, with a few more research projects completed, all funded by charity and supported by volunteers, we have provided much evidence to support the importance of lymphatic drainage in ME/CFS and we are now just about to embark on a new study at the University of Manchester, together with the NHS, into Long Covid, again funded by generous organisations from the public. I shall never forget the generosity of all concerned without which this research would never have begun.

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Ending lockdown for people with dementia and their carers

Blog post written by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’.

 

If lockdown has been hard for many people, then emerging from lockdown may cause its own problems! Many have been made so afraid of infection that they have refrained from taking steps back into society again even when this was allowed. I have clients who tell me that they have not left their home for over a year. Many are really afraid to visit their GP (even when they can get an appointment) or to go to the hospital for important outpatient appointments. Some have avoided dental checks or eyesight appointments.

Carers know instinctively that routine is good for those with dementia – they find it easier to cope when there is a set pattern to the day and more difficult to cope when their routine is upset. This past year has disrupted many lives. Routines of social interaction have been interrupted and disturbed. Familiar visitors have stopped visiting. Family have kept their distance. Even those of us who are able to understand the reasoning behind the disrupted routines have been disturbed and depressed – how much more difficult for those unable to understand what is happening?

I have found it quite disconcerting when people have told me that they have become ‘used to’ staying at home and are reluctant to go out and meet others because I know that meeting up with other people, talking, touching and mixing are very important for those with dementia. Perhaps it is easy to forget how vital such activities are for carers too.

The Cognitive Stimulation Therapy groups that I run have been able to continue (under Covid-secure guidelines) since September and people have been very grateful for this, but the Dementia Café has not been allowed to run and carers have told me that they really missed this facility. It seems that the simple chance to meet along with the person they are caring for, in an informal social setting was considered by many to be a lifeline.

Now, hopefully things are changing again and we can once more meet up with family, friends and supporters.  I feel it is important to embrace this new ‘opening up’ of society both for people with dementia and for their carers. But perhaps we should also take note of the fact that life can change suddenly and unexpectedly and that things can happen that are beyond our control. We cannot plan for every contingency but we can all remain open to considering change and accepting the need to adapt – and this is particularly true when caring for someone with dementia.

 

‘Solutions in Dementia’ by Mary Jordan (due in 2022) addresses the many occasions of dramatic change that can happen as dementia progresses and highlights some solutions that have been found helpful.

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Why Volunteer?

With both Volunteers Week and Carers Week this month, it is an important time to think about what we can do for others. Author of ‘Who Cares?’ and winner of The People’s Book Prize 2020/21 Best Achievement Award, Sara Challice, explains how you can offer help to others through volunteering and why it is important to get involved.

I think we are all aware of the countless volunteers who have rallied round to help during this last year’s pandemic. In giving just a little bit of time, we can make a huge difference for many.

I discovered our local charities and the great work they do, after my husband became disabled from a brain tumour. Although he was given six weeks of physiotherapy from our hospital once he came home, this service was stopped soon after and his file was closed. I was then left attempting to pick up a man twice my size from the floor as he continued to have falls and deteriorated further.

During this time, I was told of a charity called INS (Integrated Neurological Services). I had never heard of them – why would I? They were in our local area, and offered one-to-one physiotherapy plus more, and I would also receive support as a carer. We immediately registered with the charity and met a wonderful group of people, who helped support us both during our challenging times.

Had I not become involved with this charity and and the the great work they do, I wouldn’t have known about the difference they were making in others’ lives. I became a trustee for them and discovered that there were times they were financially hand-to-mouth. You would naturally presume these charities would just be there for us forever, as and when we may need them, but that’s just not the case.

Many who have been diagnosed with a neurological condition and those caring for them, are often isolated, left struggling at home – and you don’t need to be old! Any of us may suddenly need this vital support.

Charities and the voluntary sector help to connect and support within our communities – empowering and ensuring a better quality of life for many, even keeping them at bay from hospital.

But what do you, as a volunteer, receive from your altruistic actions?

If you offer to volunteer, it doesn’t have to take up much of your time. You can make a real difference in others’ lives – more than you even realise! You will most definitely gain knowledge and meet some wonderful and inspiring people. Plus, in being kind and offering to help, is actually beneficial for you. There is a term known as the ‘Helpers High’ – as you give to others, this distracts you from your own problems, releasing endorphins making you feel good. Helping others gives you a sense of purpose, boosting your serotonin levels which lowers stress and improves your mood.

And in offering to volunteer, this can create a positive ripple effect, inspiring those around you. I have certainly had friends and family who have become involved with the various charities I have supported over the years.

So if you’ve been thinking of offering a bit of time to help others, why not get in touch with either your local or national charities, for a cause that may be close to your heart. You never know, you may learn new skills, gain new insight and meet some wonderful people as I have.

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How to Survive the Stress of Caring, and Look After Your Own Health

Blog post written by author of Who Cares?, Sara Challice. Who Cares? has been shortlisted in the Non-Fiction category of The People’s Book Prize 2020/21. Click here to give it your vote.  

 

Caring for a loved one is, without a doubt, a kind and selfless act. Not only does it give another a better quality of life, it may even extend their longevity.

But whilst caring, your altruism could cost you more than your time and energy, because around 70% of carers fall either mentally or physically unwell – this included myself!

During my time out recovering, I realised I needed to make changes so as not only to survive my caring role, but also to regain my health and start enjoying life again.

So how can you overcome the stress of caring, to become more resilient and safeguard your own health?

1. Check in with yourself

As a carer, you’re often so busy being there for everyone else that you ignore your own health. And during the pandemic, this is ever more so whilst trying to talk to your GP, let alone arrange a hospital appointment – all time-consuming tasks that take even more of your precious energy and time.

You may even be suppressing your emotions, as you’re so busy tending to and protecting those around you who are almost certainly classed currently as ‘high risk’ for coronavirus. The pressure can build up, bit by bit, and go unnoticed until crisis strikes.

Do you have a good friend or family member you could check in with for a short time, once a week? This can be either face-to-face (socially distancing of course!), over the phone or via Skype. Or you could try journaling – writing down your feelings and the issues you’re experiencing. Observing what is actually happening can help lead you to making better choices for yourself, as well as for your loved ones.

2. Take a break

If you see each day as a list of chores – just doing this, just doing that – you’ll end up simply falling into bed exhausted!

Even though times are ever more challenging, you still need to have regular breaks, as well as have quality time. You’re not just here for a loved one, you are also here for you!

Try taking a short break between each chore, even if it’s 10 minutes. This will help you pace the day. You could jot down a list of things you enjoy doing during these breaks, such as reading a magazine, having a kip, or calling a good friend for a chat. You can then pick from your ‘break menu’, when you stop for a rest.

3. Focus on the good stuff

There is often a lot to deal with and carers are often in survival mode – focusing on the issues, to ensure everything and everyone is okay – but this does not make for an enjoyable life.

What are you happy and thankful for in your life? It may just be a hot shower that morning, or your comfy bed. It could be having loving and kind friends or patting your pet. If I’d had a bad day, I would climb into bed and think of five things I was grateful for that day. It always put a smile on my face and put me in a better state of mind before sleep.

Just remember to be kind to yourself and recognise all that you do. You really are amazing, being there for loved ones. Make sure you are also there for you!

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An Attempt to Prevent the Death of an Old Woman

A poem by Glenn Colquhoun, author of Playing God – poems about medicine

 

Old woman, don’t go, don’t

go outside into dark weather

Out into the night’s wet throat

There is cooking on your stove

Old woman, don’t go.

 

Don’t go old woman, don’t go

Down beneath that deep sea

Down onto its soft bed

There are still fish to be caught

Old woman, don’t go.

 

Don’t go old woman, don’t go

Bent into that slippery wind

Listening for its clean voice

There are songs still left to sing

Old woman, don’t go.

 

Don’t go old woman, don’t go

Walking beside that steep cliff

Watching where the sea flowers

There are daisies on your lawn

Old woman, don’t go.

 

Don’t go old woman, don’t go

Lifting in those strange arms

Caught against that dark chest

There are people left to hold

Don’t go, old woman, don’t go.

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Coping with anxiety in this time of crisis

anxiety in a time of crisis

As we are all already aware, this is a very distressing and unsteady time for many. I would like to offer some hope to those who are suffering from anxiety and anxious feelings, whether you are  or have been a sufferer of anxiety in the past, or whether the unsteadiness of this current time has caused the feelings of anxiousness and unease, I hope some of the strategies below will be able to help you cope.

  1. If you have read any of my ‘Hope’ books, you will be very aware that I am a great advocate for positive exercise and mental well-being. Many of us would leave the house on a regular basis, whether it was walking to work, or walking to drop the children at school, or a regular member of the gym, we are finding ourselves suddenly cooped up with our regular activities on hold. Making sure you are still getting regular exercise is paramount to our mental health, there are so many exercise videos on YouTube and online from beginner HIT sessions to yoga and Pilates. If you are able to leave the house, taking a brisk walk whilst getting fresh air will be invaluable. A good nights sleep and eating a balanced diet also complement exercise for their benefits on the mind.
  2. Onto my next topic….the media….whilst it is extremely important that we are all keeping up to date with the current situation, it is also important that we take our minds off it for our own sanity. Having a ‘media free’ or ‘tech free’ time each day will help us to focus on other topics and calm our minds. I love doing puzzles and find them very therapeutic. Other activities could include, reading a book, or even cooking a nice dinner.
  3. Spending more time at home is probably on most people’s wish lists, however, when it is suddenly thrown on us, we don’t know what to do with ourselves. The risk of not being able to socialize as we usually would could lead to a low mood slowly setting in. Getting up each day and giving yourselves a little self-care will go a long way to keep our minds positive and fresh.Wash your hair, shower regularly, put on fresh clothes, and you will feel ready to face the day.

Blog post written by Hammersmith author, Lynn Crilly, author of Hope with Depression, Hope with OCD and Hope with Eating Disorders