The Feelings Tree – helping children talk about emotions

The holidays are often filled with an assortment of powerful emotions, for both children and adults. This can be related to loss or upheaval in our lives, to anniversaries of significant loss, or simply because the holiday period allows time for reflection which can bring up difficult feelings for us all. So we wanted to share a free activity from the lovely Seeds of Hope Bereavement and Loss Activity Book, which aims to help children deal Jay_Seeds-of-Hope-B_978-1-84905-546-8_colourjpg-printwith loss and/or change through nature, and will be especially helpful to those finding it difficult to cope with bereavement.

The Feelings Tree is a great activity to help you get started talking to children about difficult emotions, as well as all emotions more generally. The birds in the tree can be used as starting points to bring up difficult feelings you may want to talk about, or the child you’re doing the activity with may use the opportunity to talk about emotions they don’t feel comfortable addressing head-on. However you use The Feelings Tree you’re sure to have some fun!

Download The Feelings Tree here

Read an interview with the author, Caroline Jay, on what inspired her to write the book and how contact with nature can help us deal with loss, here.

You can also find out more about the book, read reviews or order your copy here.

Catching up with Ann Andrews – inspirational author of Positively Parkinson’s

Ann Andrews worked as a television and theatre producer, researcher, teacher and crisis counsellor. She was diagnosed with Parkinson’s in her fifties, and went on to write the informative, practical and inspiring guide to living well with Parkinson’s; Positively Parkinson’s.  We caught up with Ann to find out what she’s been up to since the publication of her book, how she’s managing her Parkinson’s symptoms now, and what she’s looking forward to in the future.

Andrews - image 1

Ann speaking to fellow Parkinson’s sufferers

Since the publishing of Positively Parkinson’s I have travelled through most of the North Island and some of the South Island of  New Zealand talking to groups of people with Parkinson’s. In doing so I have met people from all over the World and everyone has told me how important the book has been for them. It seems to have achieved what I most wanted it to do:  help us all have a better understanding of Parkinson’s and to become a do-it-yourself guide to helping ourselves stay well.

Andrews - image 2

Ann at a signing session

I went to New York last year and am going back again this Christmas. We have a daughter there and a delightful about-to-be-two-years old grandson. While I was there I tried to promote the book which is published in the United States with the title I have Parkinson’s. What should I do? I found not many people had heard of it. However, I got to know a great group of Parkinsonian’s, members of a Brooklyn group.

A couple of years earlier a NY dance company had visited Auckland and offered dance lessons for people with Parkinson’s. They were called the Mark Morris Dance Company. One of the dancers John Heginbotham features in Positively Parkinson’s (page 126). While in NY I got in touch with John and another dancer David Leventhal, and was thrilled to be invited to a dance lesson at the home of Mark Morris Dance.

John was about to leave to join the same dance company in San Francisco and I was able to be there for his last lesson. In doing so I met the Brooklyn group. I was fortunate in being able to attend about five dance lessons with David Leventhal and student members of the dance company.

Pamela and Ann chatting at Mark Morris NY, December 2012

Pamela and Ann chatting at Mark Morris NY, December 2012

I describe the New Zealand lesson in my book (page 127) but being there at the home of the dance company was very special. As well as dance lessons I went to some movement lessons with Pamela Quinn, a dancer who has early onset Parkinson’s. She is so fit I found it difficult to keep up with her in class, though most of the other members seemed to be able to.

You can see her and some of her exercises on YouTube.  If you would like to know more about the dance lessons you could get in touch with Maria Portman-Kelly who manages the Parkinson’s classes at the Mark Morris Dance School.

What these classes also achieve is to provide a meeting place for people with Parkinson’s. Attending class once or twice a week at Mark Morris or the Juliana School at the Lincoln Centre means New Yorkers can meet for coffee and a chat as well as exercise.

Ann reading her new children's story book

Ann reading her new children’s story book

This year I have written a bright picture book for children and grandchildren of someone who has Parkinson’s; a child’s guide. Called Grandma’s Brain, it is illustrated with drawings of me and my grandsons, my brain, a young space traveller and space pirates.  My son, a magazine publisher, is publishing the book which will be available sometime early in 2015. By then I hope to also have a website. The story is meant for children aged between 5 and 12 to read themselves or be read to. It is light, humorous, entertaining, yet informative and is colourfully illustrated. Look out for it!

In the last year I have had a few falls and my balance is not what it used to be. It has been both an eye-opener and a wake-up call.  I now use a hiking stick when out and about. I find friends and family very quick to offer an arm, which is nice and I take it without demur.

More of my friends have now had the deep brain stimulation operation, one as young as 43. They seem a lot better and have been able to reduce their medicine intake.  There is also a very different research programme here in Auckland which utilises the same initial brain operation, but for quite a different reason. I’ll try and explain it: To begin with… On an island in the Auckland islands group (far south of NZ into Antarctic waters) some pigs were left about two hundred years ago. Because of their isolation they have developed into a healthy virus free herd. Some of these pigs now live in a separate isolated location in New Zealand.

Pig tissue has been used successfully in medical treatments for many years, but this research is about pig cells. The programme entails removing some choroid plexus cells from deep within the pig’s brain. The choroid plexus in all brains releases a growth factor that repairs cells and makes nerves grow. Obviously we can’t transplant human choroid factor cells but we can use those from pigs, especially virus free pigs.

To inhibit the immune system from rejecting the pig cells they are placed in tiny capsules rather like Goretex which shield the cells while letting nutrients in and growth factors out. The treatment involves surgically placing the cells into the brain to encourage the nerves that have died back to regrow. A group of six people with Parkinson’s are taking part in this research. They will be assessed carefully and if there is no improvement after six months they will be offered the alternative deep brain stimulation.

I have tried to think of anything I particularly wanted to add to Positively Parkinson’s. There have been things that occurred to me, but which I can’t remember at this moment. I’m still experimenting. I have been on a course of hormone Andrews_Positively-Park_978-1-84905-411-9_colourjpg-printreplacement which is supposed to help me remember things. I’m not sure it does, but six months on my memory does seem better. I’m sure one of the most helpful things you can do is keep working on yourself. Hold a constant dialogue with your brain. Tell it to take bigger steps, make a bigger voice and do the exercise you’ve been putting off.

One group I don’t mention in the book is the nurses working in homes for the elderly. I have talked to a number of them and found they had little understanding of Parkinson’s in the people they were caring for. They had no idea that it could be the cause of a mask-like face, the inability to smile and the lack of a voice; with the result that many of them misjudged their patients completely.  To me this is dreadful.  I have tried to impress on them that this kind of ignorance would be what people with Parkinson’s fear most.

Not a good ending. On a positive note I’ve just completed another Lee Silverman Voice Training Programme and found I had slipped back by not practising at home enough. I’ve tried LSVT Big from a useful YouTube programme called LSVT Big home exercise video. It’s expensive to learn the complete programme here so I add some of the video exercises to the same ones I have in the book.  I have added weights to try and keep my muscle tone and then, of course, I have my new exercycle which I can ride inside when the weather is not conducive for walking.

So, think big, think positive and keep doing everything you can. Your brain will find new pathways.

Ann Andrews.

Find out more about Ann’s book, read reviews or order your copy here 

Are we too afraid to listen to disabled people’s desires?

Tuppy Owens, author of Supporting Disabled People with their Sexual Lives, has worked with and supported disabled people for over 35 years. She is the founder of Outsiders, a group providing peer support and dating opportunities for physically and socially disabled people, handles the Sex and Disability Helpline, and set up the Sexual Health and Disability Alliance (SHADA) for health and social care professionals. In this article, Tuppy examines how our attitudes towards the sexuality of disabled people have changed over the years, and shares some success stories she has witnessed as part of her work.

Listening to Disabled People’s Personal Desires, Taking them Seriously, and Supporting them in their Journeys to Fulfillment

The past few decades, it has become increasingly difficult for disabled people to enjoy sexual expression, either alone, with partners or commercially. Back in the old days, things were laiséee faire. Assisted masturbation was often offered by nurses and staff. There was an adventurous, experimental attitude to sex, and no strict regulations about prostitution. I am told a residence in Sussex for wounded World War Two veterans operated brothel-style!Owens_Supporting-Disa_978-1-84905-396-9_colourjpg-print

We now live in an era of transparency and risk assessment; one nurse described it to me as residential homes operating in a liability and blame culture, with loss of person-centred care, of which sexuality is at the heart. Only some health professionals are allowed or prepared to attach sex toys to the genitals of a disabled resident who is unable to pleasure themselves. Nobody has come up with a toy which the individual could activate themselves in the middle of the night without help, but I’m working on it.

Thankfully, more disabled people can go to accessible clubs and bars, and more of them are in work: all places  where they may find a partner. However, today most people use online dating, which is frought with difficulties. Disability dating sites sadly attract preditors and are unsafe to use, unless, like Outsiders, applicants are carefully vetted. Many residences have single rooms and don’t allow bed-hopping or residents to share.

A leading disability publication published an article in the 90’s stating that prostitution is illegal in Britain (which it’s not, and never has been in Britain) and then a false rumour circulated that the 2005 Sexual Offences Act criminalised supporting another person to find a sex worker, saying that it was “procurement”. People who should know better still come up with this nonsense. With that and the over-inflated publicity on trafficking, and threats of criminalising the buying of sex, few health professionals or local authorities will entertain their residents, patients or clients gaining the many benefits of a sex session with a professional.

What else holds health and social care professionals back? My book Supporting Disabled People in their Sexual Lives, published by Jessica Kingsley Publishers on 19th November, looks at the issues in depth, as I have been engaging with disabled people to support them in their various sexual needs for over thirty years, in the Outsiders Club. Basically, as my book says over and over again, our governing bodies do not offer training, guidelines or policies on sex and disability. Myself and Lorna Couldrick, another long term activist, managed to get a short paragraph on the topic on the Royal College of Nursing website this year. SHADA, the Sex and Disability Alliance, which I run, is starting a project to change things around with the governing bodies. But I expect it will be a long battle, especially in the medical arena.

Our laws against discrimination make it illegal NOT to support disabled people to enjoy the same pleasures as others in the privacy of their own homes.

Many disabled people have received worse than useless sex education. Their sexuality so ignored, that their body confidence, sexual confidence and overall sense of wellbeing may be at rock bottom. Some feel their body does not belong to them, as it has only been poked and operated on by doctors. Privacy may have been been denied them. Having been abused, bullied, teased and sexually rejected, they may feel they are on the social scrap heap. They need a great deal of support to climb out of this hole, using body image therapy and sessions to discover what pleasures their bodies are capable of feeling, and to catch up on missed teenage experimentation.

Mat Fraser has workedtuppy blog - mat fraser 1 really hard on himself and his ‘thalidomide arms”, and he’s come a long way. He was photographed naked by Ashley Savage in one of Ashleys’s photo shoots designed to empower the subject and make them look sexy and strong. Mat learned Karate, became a drummer in a rock band and trained as an actor. All these things built up his sexual self confidence. He became the presenter at our fund-raising events, and even did his own striptease act, removing false arms and showing his real ones. He learned to love his own arms. Now he is married to one of New York’s top erotic performers and the two of them starred in “The Beauty and the Beast” which toured Britain this year.22/02/2011 NEWS: The Freak & the Showgirl. Mat Fraser and Julie Atlas Muz Mat has now become a Patron of the Outsiders Trust.

One of our other patrons, Diego Soto-Miranda, severely impaired with spinal atrophy, gave us an excellent tip on how to bring a companion into your life, as a masturbation aide, lover and partner;

Finding a lover/partner is all about maximising circumstance:

  • make them laugh
  • be very polite, and
  • figure out what they want and give it to them.

A wheelchair does not come into the equation. Few say they want someone to climb Everest with them. Usually, they want respect, appreciation, someone to listen, but overall the best aphrodisiac is laughter. Make her/him feel like the centre of the universe.”

Diego worked on his own self confidence to work this one out and put it into practice. He is Brazilian, which might help! In Brazil, flirting and sex are taken seriously. It’s time we started taking such things seriously here.

Tuppy Owens
The Outsiders Trust

Our websites:

www.outsiders.org.uk

www.SHADA.org.uk

www.TLC-trust.org.uk

www.SexualRespect.com

www.AdvocacyProfessional.com

You can find out more about Tuppy’s book here.

‘Contact with Nature can be immensely healing.’

Caroline Jay founded and runs the Seeds of Hope Children’s Garden, a national charity which aims to promote the use of nature in helping children manage loss. For twelve years she ran a SAND (Stillbirth and Neonatal Death Charity) group, supporting families after the death of a baby. We spoke to Caroline about using life cycles to teach children about change, how nature can help us come to terms with loss, and how her own experiences inspired her to write her new book, Seeds of Hope Bereavement and Loss Activity Book.

What inspired you to write the book?Jay_Seeds-of-Hope-B_978-1-84905-546-8_colourjpg-print

A love of Nature and of being outside in the sun and air has been my inspiration for the Seeds of Hope Activity Book – that and the realisation that so much in Nature echoes the changes that happen in life.  None of us can live life without change.  All change implies loss and new beginnings  – and this is a pattern ever present in Nature.

In your book, you use life cycles in Nature as a means of explaining death.  Why did you choose that particular method?

Mainly because life cycles are fun!  How amazing to see frogspawn turn into tadpoles that then turn into frogs!  Or a grub become a caterpillar that disappears into a chrysalis out of which bursts a butterfly!  Also because looking at the lifecycles that happen all the time in Nature can help us understand that change and loss are part of a natural order.  “Death is a part of life is a part of death is a part of life is …” and so on as the circle turns.  A seed becomes a plant that becomes a flower that becomes a fruit that contains the seed from which a new plant will grow.  A baby becomes a child who becomes an adult who becomes an old person who will eventually die as new babies are born.  The 4 stages of the life cycle in Nature reflect the 4 stages of a human life.  The pattern continues: there are 4 seasons in the year, 4 weeks in the month, 4 quarters in the year.

Have you found yourself applying the methods you describe in the book in your own personal life?  Have they been helpful?

When my first child, Laura was stillborn, I found myself completely out of balance.  My hospital notes said I was a mother but I had no child.  The world around me seemed suddenly full of babies and heavily pregnant women.  The pain of grief was palpable.  I took long walks in the woods.  I found contact with Nature and the outside world to be immensely healing and grounding at a time when my world had been turned upside down.  Grief for most people can be a very dark place.  Planting seeds or plants and watching them grow in the Spring after the darkness of Winter can be uplifting and provide some hope of brighter times to come.

Does the grieving process for children and adults differ greatly?

The huge range of emotions we may feel when grieving – sadness, anger, shock, disbelief, fear, guilt, numbness to name a few – are generally speaking the same for children and adults.  One difference is that children are usually only able to stay with their feelings for short periods of time – a bit like jumping in and out of a puddle, they may be very sad one minute and want to go out and play the next.  Adults will generally have easier and clearer access to the information surrounding a death or a loss whereas children will generally be dependent on the adults around them to tell them the facts.  It is a natural instinct to want to protect children from painful life experiences but, in the case of a death, this can lead to confusion.  Children fare better when they are given honest information.

What has your experience with SAND and the Seeds of Hope Children’s Garden taught you about how people deal with loss?

Everybody responds to loss and bereavement in different ways.  There is no right and wrong way to travel the road and there are no shortcuts.  Very generally speaking men and women tend to grieve differently in that women are inclined to want to talk about their feelings for longer while men are more inclined to want to take action to restore the status quo.  Partners, whether male or female, often grieve in different ways and at different speeds.  In the case of a child’s death, the loss is equal and therefore no one person is better able to support the other.  Some seek out a support group while others prefer to grieve privately.

How do you hope your book will make a difference?

The activities in the book serve to provide structure for and clarify the grief process for a child allowing them to see the natural process of the cycle of life in Nature.  The images encourage exploration and observation of creatures, plants, and seasons.  The way in which a child’s journey through grief is handled will fundamentally determine how they manage all future losses in adulthood.  I hope the Seeds of Hope Activity Book will empower children to explore their feelings in ways they can understand – by drawing, playing, exploring and having fun.

You can find our more about Caroline’s book, read reviews or order your copy here.

Request a copy of our latest brochure of books on Dementia.

Our latest catalogue of books on Dementia and Working with Older People is now available. With full information on our new and bestselling dementia titles, our dementia catalogue is a tremendous resource not only for those working with 2014-October---Dementia-Catalogue---COVERpeople affected by dementia, but also for family members, friends and carers. Including practical books for professionals, manuals on how to incorporate creative approaches into dementia care, as well as guides on coping with dementia for friends, family and individuals who are themselves affected.

To receive a free copy of the catalogue, please sign up for our mailing list and we’ll get one out to you right away. You may also request multiple copies to share with friends, family, colleagues and clients–simply note how many copies you would like (up to 20) in the ‘any additional comments’ box on the sign-up form.

We hope you will take advantage of this opportunity to get more information about our outstanding new and upcoming titles such as How We Think About Dementia and Developing Excellent Care for People Living with Dementia in Care Homes. The catalogue also features information on bestselling titles such as Leadership for Person-Centered Dementia Care  and Comforting Touch in Dementia and End of Life Care, as well moving personal accounts of the experience of dementia such as Dancing with Dementia  from Christine Bryden.

Click this link to see a listing of new and recent titles from Jessica Kingsley Publishers’ Dementia list.

To request a copy of the JKP complete catalogue of books on dementia, please click here to fill out our sign-up sheet. Please be sure to click any additional areas of interest as well. You should receive a copy of the catalogue within two – three weeks.

 

 

Attachment, schools and vulnerable children: An interview with Nicola Marshall.

Nicola Marshall is a certified coach, adoptive parent of three, and author of the newly published The Teacher’s Introduction to Attachment. We spoke to her about why she wanted to write a book on attachment for teachers, what she’s learned since starting her own training company for teachers and other school staff, and she shares her number one tip for educators working with vulnerable children. 

1) How did you become interested in attachment?

My husband and I adopted three children 6 years ago now and I became interested in attachment as a result of trying to understand the impact my children’s early years experience has had on them. Throughout the adoption journey Attachment was mentioned and it fascinated me to know that so much of what we do in our adult lives is a result of our early experiences. I’ve always believed this actually, as someone who has always been interested in people and how they tick, to know that how we build relationships comes from much of our early experiences made sense.

Since looking into attachment I can see how important all our relationships are and it’s a constant journey of discovery.

2) Why did you decide to write a book on attachment for teachers?Marshall_Teachers-Introd_978-1-84905-550-5_colourjpg-print

There are many books available on Attachment and I’ve read quite a few of them. They are brilliant in lots of ways but I also have found that they can be quite heavy and time intensive. If you are really interested in the subject, as I am, then there are brilliant books to further your understanding such as Bruce Perry or Dan Hughes books.

However whilst doing training for schools and other people working with children I have found that there’s a reluctance to read some of the more academic books on the subject. As a parent and a down to earth person myself I felt there was a gap in the market for a book that was accessible to all teaching staff, whether they are time pressured or just not that interested in the subject. This book is an easy to read, practical and very accessible and my desire is that anyone and everyone working with children of any description would read this and find it helpful.

 3) You run training programmes to help educate teachers and other school staff about attachment – what have you learned whilst doing this?

I have loved training educators over the last three years in this subject. The people who attend the courses are so dedicated and committed to the children they serve that it has been an inspiration to me. I have seen that many are under immense pressure to get children to learn who are just not ready to learn. The pressures on resources, funding and time are creating a system that seems to be a hindrance to vulnerable children out there who need patience, time and nurture given to them in order that they can learn.

Through the workshops and onsite training I’ve run and the hundreds of educators I’ve spoken to I can see that this is a vocation – you have to have a calling to be an educator as what you want to do and what you’re allowed to do many times don’t match up. I wish our educational system was more flexible as I know it’s not for want of trying on the front-line staffs side – they understand that we need a different approach with some children, that we need to be their parent, carer, therapist and social worker sometimes as the adults they meet at school may be all they have.

4) Can you think of a case study or example of having school staff educated in attachment, which has led to direct benefits for a child or group of children?

I can think of many schools and particularly children who have benefited from more of an awareness of Attachment. A few spring to mind. One child who is from a very small, rural school – his teacher came on my workshop a few years ago, the training impacted her and it helped her to understand his behaviours. However it didn’t seem enough. So this year I was asked to go and observe the child in school and to give some recommendations on what practical strategies they could use to help him. After two days we sat down with the parent of this child and discussed what had been observed. It was great to see that for that parent it was so important to know that someone could see the anxieties and fears her child was desperately trying to hide. We talked about practical ways to build relationships with him and to help him feel safe. As a result I am sure he will flourish in that very nurturing and caring school.

More locally to me, a High School have taken on the challenge of really trying to understand a complex child in year 8 who has an ambivalent attachment. Many of the schools sanctions do not work for this child and in fact send her on a spiral of negative behaviours as a result. With training and talking with the parents the school are using different strategies to try and help her feel safe and to take control of her regulation, so that she can settle to learn. The result of this for the child is that she can start to learn in school instead of just surviving but also the staff members are happier as they don’t have to keep enforcing sanctions that do not work. Finally, this child is not distracting the other children in the class, so they can learn too.

5) What would be your number one tip for teachers or other staff working with vulnerable children?

Look beneath the behaviours to the root. All behaviour communicates something. For children who have experienced early trauma their behaviours very often are how they express themselves. They are not ‘naughty’ children trying to manipulate. They are frightened, anxious children who will use any means at their disposal to feel safe and get their needs met. When you can see that and truly appreciate that then you can begin to meet their needs and the behaviour will change in time.

 You can find out more about Nicola’s book here.  You can also find out more about her training company, BraveHeart Education, and the work they do training educators in attachment and its implications for the classroom, here 

Why Neuroscience for Counsellors?

Rachal Zara Wilson is a counsellor, social worker and author of the new Neuroscience for CounsellorsWe caught up with her for a quick chat about the book and why she wanted to write about such a complex topic. 

1.  Who do you think would benefit from reading this book?

Definitely counsellors, but also any other therapists as well.  The book is designed so that it has sections where the neuroscience is explained, and separate sections for counsellors and other therapists with suggestions on how to use this knowledge for the benefit of their clients in the session room.

Families of people who are experiencing mental health dysfunction may also be interested in the knowledge contained in this book, and also in the implications for how they can support their loved ones.

2.  Why did you write this book? Wilson_Neuroscience-fo_978-1-84905-488-1_colourjpg-print

I’ve always been interested in neuroscience; the brain is so fascinating and amazing, and capable of so much more than we’ve always been led to believe.  And of course, as a counsellor working with people, how the brain works has always been top of my mind.  The final motivator was having a child who was experiencing problems with their mental health, and I guess I just hoped to find something that would help him and others in a similar situation during the course of my research.

3.  So what’s so exciting about what you learned?

Probably the most exciting thing would be the brain’s capacity to change itself, known as brain plasticity.  The brain isn’t static, it’s more like a dynamic organ that is constantly changing for better or worse.  And what we do plays a huge part in how it changes.  How much stress we’re under, what we eat, the quality of our sleep, whether we exercise and how much, our living environments, and the presence or absence of early trauma in our lives are some of the things that contribute to the way our brain functions, and to its capacity for change, or plasticity.  I guess the most exciting thing is that we have control over this plasticity to a large degree, and we can therefore improve the quality of our brain function, our health and our lives.

4. Why don’t we know this stuff already?

Because neuroscience is a field in its infancy.  There’s a lot of learning coming through, but much of it’s wrapped up in scientific jargon, making it inaccessible to those of us who are not scientists.  And because there’s lots of different levels of looking at the brain, (both micro and macro,) different neuroscience specialties do not always integrate their specialist knowledge.  I think the benefit of this book is that it integrates the neuroscience into an overall big picture, while also drawing on this resource to come up with practical ways for integrating it into therapy.  It hasn’t been done before because it’s new, because it’s complex, and because integrating neuroscience with counselling and other therapies requires a knowledge of both fields.  I believe that in the future, all practitioners providing talking therapies are going to need to understand what neuroscience offers our professions, or risk becoming irrelevant.

5.  Why put it in a book?

This knowledge is meant to be shared.  All counsellors and therapeutic practitioners want best outcomes for their clients, and the more knowledge we have that can help people make positive change in their lives, the better.

6.  Is it complicated?

The neuroscience is complex, but the book is designed so that people who just want to know what it means for their practice can just read those sections, while those who want to understand how it all works can read up on the explanations for how all the scientific evidence fits together.  The book is written in the plainest English possible, and there is a glossary and diagrams at the back to help you fit it all together.

You can find out more about the book, read reviews and order your copy here.

On Grandma’s Box of Memories – interview with the creators

Jean Demetris was a primary school teacher for 22 years. 8 years ago her husband was diagnosed with Lewy body dementia. She dealt with many aspects of the condition, the highs and lows, and engaged with the many agencies involved in her husband’s care.
The experience inspired Jean and her illustrator son Alex to create a storybook for young children; to help them understand and talk about dementia with their families. We caught up with them both for a quick chat about the inspiration behind the book and what they hope it will achieve. 

Demetris-Demetr_Grandmas-Box-of_978-1-84905-993-0_colourjpg-web

 

Q1. Where did the idea for Grandma’s Box of Memories
come from?

Jean: There were two factors that prompted the idea for the book.

Firstly, when my husband was diagnosed with Lewy Body Dementia I needed information.  I found there were plenty of books on dementia for adults and some for teenagers, but hardly any for young children.

Secondly, in my husband’s nursing home I felt there was a need for more activities and stimulation for the residents.  This made me think about what could be done to encourage residents’ families and friends to participate with the residents and involve them in engaging activities.

Taking these two factors into consideration, I came up with the idea for the book that would become Grandma’s Box of Memories.

 

Q2. How did you Alex (Jean’s son) become involved in making the book?

Alex: A few months after Dad died Mum spoke to me about her idea for the book.  I liked the sound of it, so we started work on the book’s structure and on sketching out illustrations.  Soon we had put together several sample pages and before long we were very pleased to receive a commission for the full version.

I had relatively recently graduated with an MA in Illustration from Camberwell College of the Arts for which my final project had been a comic based on my family’s experiences of Dad’s dementia. Grandma’s Box of Memories represented another opportunity to work on a subject that was close to my heart.

 

Q3. Do you have any suggestions for people on how to adjust to the changes they are likely to encounter when a family member is affected by dementia?

Jean: My experience is of a family member with Lewy Body Dementia.  Different forms of dementia have different characteristics and symptoms, so the adjustments their family and friends may need to make may be different.

Dementia should not be viewed as a stigma.  Find out as much as possible about the condition from professionals and support groups.  They will be able to advise you on available help and support, so use this to your advantage.

You must accept that you have to adjust to dealing with a changed person.  Acknowledge the limitations that dementia can cause in people.  Focus on small activities and do not expect too much of the person.  Everyday tasks such as using the telephone or cooking will become difficult for people with dementia; safety around the home becomes a priority.  Social services should help you to install devices such as gas, water and personal alarms.  You can also be creative in helping the person to remain independent using small measures such as sticky notes reminding them to lock doors, close windows, or turn off taps.

If the person with dementia is alone at home it is also helpful to arrange for friends and neighbours to drop by and check they are safe.

Personal hygiene may become problematic as reluctance to bathe or change clothes can take hold, and you may need to help with these tasks.  Initially this may cause embarrassment but it can be overcome.

Patience and understanding will win out over confrontation in dealing with situations, and a sense of humour is essential.

Should your family member need residential care, try to help make it a home from home.  Enjoy going there and participate in events such as birthday celebrations.  Engage with staff and other residents.  You will encounter people you would not normally meet, which can be rewarding.

Don’t be upset when acquaintances find it difficult to engage with the person with dementia.  Some people will naturally find the situation hard to deal with.

Your lifestyle will change, sometimes quite dramatically.  Caring for a person with dementia can be hard work emotionally and physically, but don’t be hard on yourself.  Seek help – it’s there, and find time for you.  Occasional treats are a must.

 

Q4. What do you hope young readers will gain from this book?Illustration 22

Jean: Grandma’s Box of Memories is meant to be educational and entertaining; I hope readers will enjoy the story, illustrations and characters.

The book provides children with basic but helpful information about dementia, and invites readers to suggest their own ideas for items to go in a memory box.  It might also encourage children to be creative and come up with ideas of their own to support people with dementia.

Hopefully, it will help children understand that they can be part of the caring process and share their feelings and ideas with family members.

 

Q5. What should parents remember when they are explaining dementia to younger children?

Jean: Children will be aware that something is wrong but will normally accept the diagnosis of dementia given the appropriate support.  It is natural for an adult to want to protect the child yet is important to explain what is going on in a calm and clear way.  A child may experience a range of emotions, such as sadness, anxiety, anger and confusion, and will need reassurance that adults are there for them and can offer them time for discussion, both talking and listening and encouragement to ask questions.

It is important that the child understands that dementia cannot be cured but there are ways to help the person feel loved and wanted.

 

Q6. How can children be involved in the care of family members?

Jean: Most obviously, children can pay frequent visits to the person with dementia.  During these visits they can look at books and photos with the person, chat with them, listen to music and sing and dance, draw pictures, or do simple jigsaws.  They can also share small treats such as sweets and biscuits and help to peel and share pieces of fruit.

Outings to places like local parks are another way that children can be involved in caring for someone with dementia.  Sharing simple outdoor activities like playing catch or feeding ducks is fun for everybody.

Please note: if you are in the US or Canada, you can view the book information page and order your copy here.

 

Browse our latest collection of new and bestselling titles in counselling and psychotherapy

Here are our new and bestselling titles in counselling and psychotherapy. For more information on any of the books inside, simply click the title or cover image to view the full book page.