DOWN AND UP

SYNCHRONICITY


Life has its own way of letting us know that synchronicity exists. Meaningful coincidences that have no boundaries or essence of time. Often it's just one step, one thought, one deed that results in a coming together of so-called coincidental circumstances. It's because of one deed of kindness that a review of The Madonna in the Suitcase appeared in the Spring 2010 (89) Down+Up publication.  Unfortunately I cannot yet attach this Dutch review as  a link so will try to import it into the text.  But first I want to tell how a book review ended up in The Netherlands.


 Years ago we got to know a special Dutch couple, Cocky and Gideon, who paid us a visit while visiting their son who at that time was working on a Southland farm as part of a university exchange programme. During their holiday in New Zealand they arrived at our house one summer afternoon, bringing a heavy pile of newspapers and magazines from friends in The Netherlands. We invited the visitors to stay for dinner and we discovered many shared connections : love for classical music, opera, books. After their first visit they sent us Dutch books, CDs of special concerts, and DVDs of operas. Cocky made Miriam a patchwork quilt in glorious colours and patterns (to match Miriam's paintings).   On their second visit they shared New Year's Eve with us; for them it was special to celebrate eating 'oliebollen'  in the middle of summer, for us to have special friends with us on this important day of the year.

 During their last visit at the end of 2009 Cocky and Gideon bought eight copies of The Madonna in the Suitcase. They said, 'To send to our friends and family in Holland.' They sent a copy to one of their friends in the province of Zeeland who, as a doctor, not only had worked in Pakistan for ten years but after her return to The Netherlands worked with mentally and physically disabled people. After reading the book Fetsje wrote in a letter: 'In 1989 I started this work and had to learn a lot. From whom could I learn this better than from the parents.'

 Fetsje sent the book to a friend, Erik de Graaf, the editor of Down+Up, a most interesting publication, as the name suggests, with fascinating articles relating to achievements of Down Syndrome people as well as articles about topical issues parents deal with.  It was a lovely surprise to find Erik de Graaf's email in my Inbox one morning, asking where he could acquire a copy of the book with the purpose of reviewing it in Down+Up.  Later, it was an even greater surprise to read Erik's thoughtful and encouraging review.

 Thank you again, Erik, Marian and David. Thank you, dear Cocky and Gideon, your friendship means a lot to us. Thank you, Fetsje, for your beautiful and honest letter. As parents of a disabled child we know there is so much to be grateful for.

 From the moment of birth we have treated our children as normal and we are never going to give up the search for ways to improve their life.

  To English-readers of this blog I send my apologies. I had aspirations to translate Erik's article.  Some computers nowadays have a translation facility.  Here is Erik's article:



The Madonna in the Suitcase: ‘Andere Tijden’ in Nieuw-Zeeland -
Erik de Graaf (No.89 Lente 2010 Down+Up)

 Een goede kennis tipte ons dat er in Nieuw-Zeeland kort geleden zo’n interes sant boek uitgekomen was. Het ging over een van oorsprong Nederlands echtpaar dat in dat land hun eerste kind had gekregen: Miriam, een dochter met Downsyndroom. Maar dat wisten we toch wel? Nee dus! Het was natuurlijk wel een Engelstalig boek, maar Nieuw-Zeeland geldt bij ons als een land met een voortrekkersrol op het gebied van de behandeling van mensen met Downsyndroom. Toch maar aangevraagd dan, bij de schrijfster zelf, Huberta Hellendoorn. Een paar dagen later al hadden we het in huis. Op de achterflap staat: ‘Het boek beschrijft de problemen die overwonnen moeten worden bij het opvoeden van een kind met een verstandelijke belemmering, maar toont daarnaast ook de vreugde en de triomfen als Miriam zich blijkt te ontwikkelen tot een vastbesloten jonge vrouw met lef en een uniek talent.’

 In de loop van de tijd is Miriam namelijk prachtig gaan schilderen. Zie de cover voor een fraai voorbeeld.

Huberta Hellendoorn heeft in een heel aantrekkelijke stijl en met veel gevoel een goed boek geschreven. Het is alsof ze samen met haar dochter herinneringen ophaalt. Later zal blijken waarom dat ook zo moet.

Even los van Downsyndroom doet het in het begin even denken aan de Nederlandse film Bride Flight. Het gaat immers over Nederlandse mensen die kort na de oorlog met eigenlijk helemaal niets een nieuw leven beginnen in dat verre land. Hoe ze daar iets proberen op te bouwen, maar toch nog met heel veel vezels, via de communicatiemiddelen van toen verbonden, blijven met hun familie in Nederland en (later ook) Australië. Hoe dan ook, voor wat betreft Downsyndroom als zodanig zijn de auteurs met hun op 5 maart 1962 geboren dochter inderdaad voorlopers geweest. Dat wordt zeer duidelijk. Zo komen we in het Nieuw-Zeeland van toen het nodige tegen dat in het Nederland van nu helemaal nog niet zo vanzelf spreekt.

 Speelgroep 

 Als Miriam drie jaar is, wordt moeder Huberta gevraagd of haar dochter drie ochtenden in de week mee wil doen met een pas opgerichte speelgroep vlak in de buurt. Dat gebeurde vanuit de IHC, de nationale organisatie voor mensen met een verstandelijke belemmering. De at- titude van Huberta en Bert, de vader van Miriam, blijkt duidelijk als ze schrijft: ‘Wij zouden jouw zogenaamde handicap jou en ons niets in de weg laten staan’. Miriam is vijf jaar als ze met een taxi naar school gaat. Op dat moment kan ze al een paar woorden lezen. Beste lezers, het is dan 1967. Kijk eens hoe bijzonder dat helaas nog steeds is voor kinderen met Downsyndroom in het Nederland van nu. Miriams ouders beschrijven hoe ze zelf grote letterkaarten hebben ge- maakt van wit karton waarmee ze woor- den leggen. Kat, hond en huis om mee te beginnen. Ze hebben een kat en een hond en een huis. Affectgebonden woorden dus uit de eigen wereld van het kind. Iedere avond na het eten vormden ze een nieuw woord. ‘Het begin van jouw vocabulaire’, schrijven ze. Leren lezen dus om te leren praten. Toen al.

 Hoe lang geleden dat allemaal is blijkt ook uit de beschrijving van een terugreis per vliegtuig uit Nederland via de VS. Bij het overstappen in Chicago zegt een douane-beambte tegen Huberta: ‘U beseft toch wel dat u nooit in de VS zou kunnen wonen!’ Een Amerikaanse vriendin zegt later tegen haar: ‘Mensen zoals Miriam worden gewoonlijk binnenshuis gehouden door hun familie’. Op een gegeven moment moet Miriam naar het vervolgonderwijs. ‘Mainstreaming’ is dan nog niet gewoon, dus wordt het een school voor speciaal onderwijs. Daar leert ze eenvoudig geldrekenen. En ook spelling en steloefeningen hoorden bij het curriculum. Miriam leert er haar eigen kleine verhaaltjes schrijven. En er is logopedie op school. Intussen gaat ze ook al lang gewoon zelf met de bus.

 Als ze achttien is mag ze gaan werken op de inpakafdeling van voedingsmiddelen van de IHC. ‘s Morgens gebracht door pappa en ’s middags met de bus terug. In die tijd leert ze typen op een oude ‘Remington’. Het ministerie van Onderwijs oefent  druk uit op het gezin Hellendoorn om Miriam op te geven voor een flat in een woonproject. Maar niemand wil dat en ze blijft in haar ouderlijk huis een heel zelfstandig leven leiden. Ze eet op haar eigen kamer, voor haar eigen tv. Ze draait platen van The Beatles en The Bee Gees. Dan stelt de IHC voor om een reguliere werkplek voor haar te zoeken. Ze moet dan nog wel wat bijleren op een soort volwassenenonderwijs. En daar wordt voor het eerst haar schildertalent ontdekt, dat vervolgens met veel oefening wordt ontplooid. Het wordt een succes.

 Psychose

 Bij een zelfstandig door haar gemaakte reis naar een tante in Australië gebeurt er plotseling iets. Als ze daarvan terugkeert is ze een ander mens geworden. In ieder geval heeft ze een te lage schildklierfunctie. (Gelukkig is dat iets waar we nu toch gewoonlijk veel alerter op zijn.) Maar ook met medicatie knapt ze weinig op. Het Alzheimer-spook wordt al van stal gehaald, maar uiteindelijk komt Miriam gelukkig bij een deskundige psychiater terecht die haar manifeste probleem meteen herkent: een psychose. En met de daarbij behorende medicatie keert ze in de weken daarna geleidelijk aan weer terug op de aarde.

 Dan breekt er een succesvolle periode aan rond haar schilderhobby en haar werk. Ze gaat uiteindelijk ook op zichzelf, maar nog wel begeleid, wonen. Maar intussen wordt ze te midden van de vele sociale contacten daar wel veel te zwaar, wat een grote zorg is voor haar moeder. En dan, ergens rond haar veertigste, is er weer een discontinuïteit: ze krijgt een attaque en verliest haar spraak. Dat betekent een heleboel revalidatie om uiteindelijk nog maar een schim te worden van wat ze vroeger was.

 Terug bij haar ouders in huis moet ze opnieuw leren lopen en de taal weer oppakken met behulp van ‘woordzoekers’. Een aantal dagen per week gaat ze naar een activiteitencentrum om verder te revalideren en bij te leren. Uiteindelijk lijkt woordzoekers doen haar leven over te nemen, als een soort vervanger voor de woorden die ze had kunnen gebruiken als ze nog had kunnen praten.

 Al met al een buitengewoon boeiend boek met helaas geen al te happy end. The Madonna in the Suitcase door Huberta Hellendoorn ISBN 978-04731495 1-2
 Het boek is te koop via het mailadres van de schrijfster: huberta@earthlight.co.nz en kan via PayPal in euro’s betaald worden. De tegen- waarde is NZ$30 excl. verzendkosten.  [Het boek heeft kleuren illustraties van Miriam's schilderijen.]

RESPITE CARE

 STAYING ON A FARM

Our house has been quiet during the past two weeks while Miriam is in respite care at the McGlynn Centre in Mornington. We visited her several times and she seems happy and well-settled in. After a few days I seem to get more settled too, that heavy tiredness is not so noticeable and I see things around the house that have been neglected and that I now give some much-needed attention.

 In her own way Miriam asserts her presence, not in a demanding yet in a quite subtle way. Television and meals have to be regular and I try to do this but it doesn't always work out. Lately I've noticed she's gobbling her food because of not wanting to miss a TV programme.

 While Miriam was away, our friends Sally and Donald invited us for a few days to their farm in Central Otago. A very warm welcome, log fires, a bedroom with a view of green paddocks with just-shorn merinos, large trees with room to spread out, in the distance snow-covered hills.  The photo shows only a few of the thousands of sheep on the farm.

Merino sheep grazing.

 Sally cooked a roast dinner the first night, the second night a huge brown trout caught by Donald on the West Coast. Such treats in such a beautiful area with special friends.

 Another highlight which even inspired me to write a poem: we were invited to watch merino sheep being shorn. What an activity, music blaring, men working at top speed relieving the sheep of their fleecy load; women, strong as amazons, lifting those fleeces and sorting them. The whole team in unison to prepare the wool for packing into bales. After these bales arrive in foreign lands the wool will be processed to give us (and millions of people) our stunning merino clothes, so light, so warm. We all love our merino clothes.

 Donald reminded us again what happened when Miriam stayed with them in the early nineties. Miriam wanted to watch Lotto results so she installed herself in front of the telly in the sitting room while Sally and Donald stayed in the dining area. Donald decided to check up on Miriam, he'd heard some muttering and, as he later told us, Miriam did not have the right numbers and so aired her frustration and disappointment in a very unlady-like fashion. I won't repeat the words she used! As Donald said, such a refined young woman, always polite and respectful, but he heard strong words he found hard to associate with the Miriam he knew! Of course, we still chuckle whenever we hear this story.  Another special treat is to see one of Miriam's paintings on the wall in their dining room.  She produced so many in the years before her stroke.

One of Miriam's paintings in Central Otago.

 We had a lovely break, it's always a treat to drive from Dunedin to Central Otago. Twenty minutes after we set off from home we reach the Taieri Plains with paddocks full of quiet sheep and darting lambs. After Lawrence the scenery becomes interesting in a different way. More green hills and paddocks but gradually grey rock formations are dotted at random in the rough landscape, the sun highlighting some barren hills while other parts stay in shadow. Later there are snow covered mountains, farm tracks sometimes dividing the whiteness. 

Spring 2012 Central Otago.

 

 This time the water in the Clutha River is green but we've seen it teal-blue or brown depending on the amount of silt in the river and the flow of water coming from the mountains. Every time I drive through this area I remember the hot holidays in Central Otago when the children were young. Stopping for morning tea, boiling the billy away from the road, enjoying home-made baking, the children excited, anticipating fun ahead, swimming in cold lakes, drifting on lilos, taking picnics and going for long walks. In our old 1952 Ford Prefect it took a while to negotiate the steep hills but it never deterred us from going. Stopping at fruit stalls and stocking up on apricots and peaches, juicy and warm with the heat of the sun still inside them.

Oh, yes, those memories keep coming back.

We also had nourishing respite care.

FLOURISH

People with disabilities living life with passion 


 I've just read an amazing book with stories about amazing people. My mind can't stop going back to the people in those stories, to the challenges and joyful lives which Karin Melberg Schwier has brought to us in her latest book Flourish, a book about people with disabilities living life with passion. You can find more details about the book on www.karinschwier.com.   Karin has also got another website.

 Karin writes, 'People with disabilities have historically been surrounded by low expectations and stereotypes that perpetuate an 'us' and 'them' approach to support. To be happy and to have a rich life punctuated by intriguing, engaging and sometimes thrilling experiences that feed one's soul, people with disabilities need others to be creative, expansive and willing to take some risks.'

 And this is what Karin has done in this book.  She has shown us that there are many people with disabilities who take risks and can talk about the joy this risk-taking has given them.

 I met Karin and her son Jim last year when the family stayed in Dunedin for a short time. Karin and I talked a lot about our children, about perceptions so easily made, and how we could contribute to making our children accepted by the world. In an earlier blog I have written about the son of an acquaintance who thought that 'people like that', in this case my daughter Miriam, could not do certain things. Oh, yes, THEY CAN! And Karin's book will help to make the world understand exactly that.


 Thank you, Karin, for writing this book. Thank you, Jim for calling me 'grandma'. We had a good time at the St Clair's swimming pool cafe. Your words meant so much to me, not having grandchildren I felt accepted as I was. Thank you both for sharing your precious time here with us. Go well, FLOURISH!

Summer 2011: Jim, Miriam and Karin at ISIS

PHOTO: This photo of Jim, Miriam and Karin was taken while Miriam stayed for respite care at ISIS (One Site One Service). The painting is by Miriam, she gave it to ISIS as thanks for the special care she received there ever since she had a stroke in December 2001.

Artist meets Artist

Like-minded women

We will never forget Claire Beynon's beautiful words she wrote in her blog the day after the launch of The Madonna in the Suitcase in the Dunedin Public Library.   I want to acknowledge my gratitude to Claire for those words and for her friendship all these years.  There are not enough words to describe Claire.  She is truly amazing, talented, gracious, and a true and beautiful friend to many.  Her artistic energy branches out into art, into writing, into LIFE, and into issues that need attention.  And much more.  Read her blogspot to be enlightened, spiritually nourished and uplifted.

March 2012: Claire and Miriam on Miriam's 50th birthday

ODT Article

Down Syndrome Scanning and Choice

Just over three years ago the ODT published an article about Down Syndrome and its Ups and Down's.   This article also highlighted the choice parents-to-be  have of taking tests for possible defects.
As I have mentioned in a previous post, both Bart and I are glad we did not have the option to choose these tests.  We have loved Miriam and our sons from the moment they were born.  We have always been aware that our daughter would need just that extra care and we will stand by her for as long as we can.

MIRIAM'S LIFE In May 2009 our family and many friends celebrated, not only the launch of The Madonna in the Suitcase but also the life of Miriam, our courageous daughter, and of all those people who have been, and will be, born with an extra chromosome. Our good friend Janice Rowley of Timaru took the following photo:

Miriam, Bart and Huberta at the launch of The Madonna in the Suitcase

Several people have asked me why I wrote this book. But how could I not with such a Life Inspirational Model around me, day-by-day? With this book I want to share my love and admiration for her, and a little of my own journey too. Miriam's journey has also been my journey, a journey of learning and understanding and I want to share this adventure and the small and large differences which we had to learn. Miriam's life is the book's main focus, with an emphasis on Ability rather than Disability. But it is also a story about Bart and I making a new life in a strange land.

A talented artist and a woman whose intelligence and involvement in life has been admirable, Miriam had a full life before her stroke. She was involved in many different activities. She worked at the IHC's Food Packing Department, weighing and sealing different types of food. Four times per week she went to art classes at Queen's High School, she was on the committee of People First, and she appeared regularly on the Hills AM Radio Show (now Toroa Radio), where the No Limits radio program was organized by clients of the IHC. Every Friday during term time she worked a few hours in a voluntary capacity at Knox College Library, sorting filing cards into alphabetical order, photocopying and performing other tasks. Barbara Frame, the librarian at Knox during part of that time, told me that each week she was amazed how fast Miriam worked and how she was always looking for other things to do. She also said, 'We looked forward to Miriam arriving.' Our daughter – a woman of intense individuality, and with an ability to reach within herself and express complexities, profundities that enrich the world. Her life has reflected an unspoken motto: Get on with it. Even now. She has an independence within her, trying to do things first by herself.

Right from the beginning I've wanted this book about Miriam to be a love story with a difference where readers are allowed to overhear a private conversation; and also experience a bit more than just a glimpse into the world of a family with a handicapped child. I also hoped that the story’s positive content would allow readers - and especially parents and caregivers of people with special needs - to be able to identify with aspects of living with limitations. But one task I set myself: I didn't want it to be sentimental and I wanted to focus on Miriam's ability. I didn't want to put too much about myself in the book. It has been about my learning and understanding of the reality of another person, a person with an extra chromosome. Her reality was different, and we had to learn it and to interpret it to ourselves. And to others. Whatever I've written has been gained from Miriam's life, from our life in Dunedin, New Zealand. Any research has been done by delving into my memory, often helped by browsing through old photo-albums and reading letters we wrote since 1960 to our family in The Netherlands and which were returned to us when we visited there for the last time in 1999.

In this book I've also tried to explain how, as new parents, we coped after we were told that our child would have special needs. I was 24 when Miriam was born, statistically very young to have a Down syndrome child. In the early sixties it was quite common for a Down syndrome child to be called a Mongol. I resented that term even long before Miriam was born. It was hard to define my feelings at that time, but I have tried to separate them into three different aspects: feelings of guilt; feelings of isolation, and fear for the future.

 Feelings of guilt: Often, with the birth of any child that has special needs there are feelings of guilt. As parents we keep asking ourselves, Where did we go wrong? I tell you where my thoughts and feelings went after Miriam's birth: my husband and I had arrived in Dunedin in May 1960 – coming from a country still recovering from the effects of the second world war my weight was below normal for my size but within half a year I'd added 20 kg. The butter, the shortbread, the cakes! The chocolate bars, the milkshakes with ice cream! It was lovely. But after nearly a year I decided to loose weight, and with the help of pills I gradually managed to get back to what I weighed when I arrived here. Then I got pregnant. So, naturally, after Miriam's birth I wondered whether those pills had been the cause of Miriam having Down syndrome. Even though it was hard at the time to put those wandering thoughts to rest, yet even as a young couple and inexperienced parents we soon realised that Miriam's extra chromosome was nobody's fault. And it was a relief to reach the point when we decided that we wanted to move on rather than waste a lot of precious energy trying to pinpoint a blame.

 Feelings of isolation: During those early years I remember being consciously aware of having no family around. No email, no cheap phone calls. Letters took a week to arrive and although there were many questions I'd wanted to ask my mother, by the time she would have replied, most problems would have been fixed. But there was always Dr Spock's book which became my main resource of finding out what babies needed. I admit I was lonely, my husband away to work all day, no car, no phone, an old house with a loo outside. We had made friends but they were settled and as lovely as they were, most of them had an attitude of: you've chosen to come here, so make the most of your life. In Chapter 16 of The Madonna in the Suitcase I write about Miriam's psychotic episode caused by an undetected thyroid deficiency. That again was a lonely time because Miriam could not tell us exactly what was going on inside her body, and Bart and I felt as if nobody understood the extent of her illness.  That time was so very different from the period after Miriam's stroke when she came home from ISIS. During that first year we had all the help we needed and we were supported by the caring and dedicated staff at ISIS. A supervising care continues to this day for which we are deeply grateful.

 Fear for the future: After Miriam's birth my fear for the immediate future was: how can I manage, how can I cope? During those early years finding the right words was a barrier. I'd learned English at high school and had worked as an au pair in the U.K. Yet, although I spoke it reasonably well, there were always the subtle nuances which made communication just that bit harder. Those years were full of many uncertainties, many unanswered questions. When the twins arrived, I was even busier but I still managed to read. Novels, autobiographies, biographies – books which presented their own way of finding out about life and fears other people had experienced. Writing letters to our family was good too - but, oh well, it didn't matter that there were complaints that my letters were like newspapers! I can't remember exactly when, but one day I realised that it would be important to talk to others about some problems we had experienced. Any information is important in this context so that outsiders get an idea what it is like to cope, not only with the family member concerned, but also with issues surrounding a young or not so young person with special needs. Not only physical and emotional needs, but also how one's child is perceived by a community. Years ago I met a woman who at that time had teenage children. I used to tell her little bits about Miriam - what she had done; what her next plans were. I'd repeat some of Miriam's delightful and often strong remarks. This woman, in turn, would relate this remark and other comments to her children. Later, she told me that her son hadn't realised that handicapped people had feelings. He had said to her, 'I didn't think that people like that could say things like that.' From that time his perception changed and instead he would greet rather than abuse. This episode again was for me an indication of the need to keep talking about Miriam and about her achievements, and about our experiences. Even at that time it also raised questions about the narrowness of our view of intelligence.

 Perhaps all of society is like the boy who was surprised that Miriam could 'say things like that.' She cannot only say 'things like that' but she has proved that same openness and intelligence in her paintings. Miriam loves to watch television and while she watches she likes to make running comments, whether the programme is netball or one of the soaps such as Shortland Street, Coronation Street, The Eastenders and the police dramas. The other day Miriam and I were watching a Miss Marples programme: a policeman was interrogating a suspect. After the policeman had asked a particular question, the only reply the suspect could make was, 'what did you say'? Miriam leaned forward in her chair and said instantly, 'You heard'! Next that comment was repeated by the cop! And I thought, You don't miss much! You hear, and you observe.

Miriam talking to Foster

 We are fortunate if we can hear and if we can see. And my hope is that by reading this book, more and more people will understand the importance of acknowledging the gifts and talents of our special children. The birth of our daughter has given us so much. An awareness of important values. Unconditional love. Acceptance of people and situations. There have been very difficult times as you will read in the book, but as a family we have stuck together. From the depth of my heart I can say that in our case I am glad that scientific advances have not stopped us from making the most of whatever has come our way. It is probably easier to say this in retrospect but I know that Bart and I would not have wished it any differently. So much emphasis has been placed on perfection, everything bigger and better and more streamlined to suit the extreme consumerism. Yet I cannot think of my daughter as being imperfect. She is not in any shape or form. She is different. As we all are different!

Caring for an adult child

Our daughter Miriam was born in 1962 with Down Syndrome. My husband and I were 25 and 24. Our twin sons Foster and Raymond were born in 1964.
Miriam's birth: Miriam was the first baby our GP delivered. I remember that day asking the nurses 'is she all right?' I looked at the space between her eyes, how she held her arms and legs like a frog. That first night I asked the nurses again, and again. The nurses must have contacted the doctor because the next evening at visiting time he came into the room, I looked at his face and said, 'she is not all right, is she!'
A few months before Miriam turned 40 she had a stroke which left her initially severely paralysed on her right side. Three months after the stroke she came back home to live (she'd been in a supported flatting situation since 1995). She'd had a full life which now had been drastically curtailed. My husband and I again became her full-time carers in a different way.

Caring for an adult child: A child that stays a child, perhaps a 'young 10-year old'. But also an awareness of how that child is nearly the same age as I am now due to the accelerated ageing of DS people.

The last few years Miriam has had a lot of medical problems, often resulting in operations. Gall bladder, eye operations. Ever since the stroke she's had to wear a splint on her right leg but her foot/ankle never came back to 90 degrees. Consequently ulcers under her feet. In 2009 she had an operation to have her Achilles tendon lengthened. Wasting of her leg, massage. Last September she had a bad fall and we are now back to carer support for showers etc six days a week as well as 3 x per week physio exercises. She now also has to wear a knee brace. We cannot leave her by herself any more, sitters and problems. MoH helpful but with closure of the ISIS facility no alternative care place can be found.

Aspects of caring:

Emotional level: protective, aware of her feelings – her inability to voice her thoughts. Careful to be a translator, her 'voice', her autonomy.
Social limitations: not the same flexibility as peers. We now need to get sitters to stay with her whenever we want to go out. I learned also that I have to check I don't make her wellbeing my main topic of conversation.
Personal level: I want to cope for as long as I can but have to accept that in my mid-seventies I am sooner exhausted than I was ten years ago.
Coping techniques: Acknowledging the stress incurred. As hard as it is I need courage to let others know that I am stressed. I've learnt to be more aware of my needs. I am grateful to be able to meet friends for a good natter and am lucky to have lots of hobbies: writing, reading, music, swimming, walking, gardening, Pilates. There are not enough hours in the day.
Financial: Stressful, using alternative remedies, costly appointments both for Miriam and me. Prescriptions by doctor often generic, and I end up paying heaps more for the original medication. I'll never forget the audiologist who suggested I needed a regular massage to help with tinnitus.