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Where carers of adults and children with long-term conditions, mental illness and physical disabilities share their stories and offer advice.
  • Parkinsons?

    by Hazel2 on 18 March 2010

    We were sorting through old photographs.  I found one, from about 12 years back, of my mother flanked by me and The Great Survivor's daughter - on a Scottish ferry - sea and mountains in the background.  We are huddled in anaraks, grinning at the camera.  "Do you remember this?" I ask.  "It's your mother", he says.  Long pause.  "Who are the other ones?". 

    "You need new glasses" I say, laughing.  (We are going for an appointment later).

    "No", he says, "It's Parkinsons".  A rare moment of insight and acceptance.

    Over lunch, he says that if he loses his mind, please take him to Switzerland.

    I tell him he won't know anything about it if he loses his mind (fingers crossed).  "Anyway, the journey would kill you!"  We laugh.

    Next day, after the eye tests, the optician is sitting close to us explaining about lenses and coatings.  Suddenly, my beloved says "How did you get that scratch on your chin, was it an angry customer?"  The optician and I are both startled.  He collects himself, points to an old scar running down his chin and say: "Oh that - a flying tentpole did that on a camping trip!"

    I am left wondering - is it Parkinsons loosening his tongue?  We don't mention this again.  Something flagged up for future reference.


  • To all those who are worth so much more than people see...



    I seem to have spent the best moments of my life writing you.

    I am an archive now, a wandering notebook of little smiles and insights, handwritten across the tiniest fingers.

    I am the world's longest, bravest sentence, the world's loneliest, silliest lover and the world's most beautifully meaningless painting, and I wear all these faces between heartbeats so that nobody but you can see how precious the stories really are.

    I am a word just starting to learn its meaning, looking to you for definition when the world starts to scramble my letters.

    Every now and then, I still find myself quietly astonished at the things some people see behind my eyes, like an elven firework display hiding in a camera lens. The heartbeats still nag at me, daring me to make the secret movie I never truly believed I had the budget for, and I despair sometimes when yet another draft of the script flutters unceremoniously out through the nearest window.

    But I have always known where to turn when the spells ran dry. I've always known which fingers to hold when my hand felt cold.

    If I feel frayed and worn, I look to you, the champion of paper aeroplanes, to give me wings again.

    Why then, when people look at you, do they insist on seeing only the frayed edges?

    I watched your soul get scribbled on by people who couldn't be bothered to learn the language. I watched all your best notes become tangled in the margins like angry weeds. I watched all these atrocities and more - yet still your eyes shone.

    How then did our magic words get so lost?

    I've hardly started yet, and already I know the terrors of worn, faded paper, eaten away by the scars of old folds.

    So when I shine now, I shine for both of us. I doodle fearsome, weed-eating sea monsters across those troublesome margins. I paragraph all the little galaxies we used to visit between our fingertips, back when the Universe was just a touch and a whisper away.

    I shine for all the sentences my little word still wants to make - and I shine for the kind of heartbreaking smile you can only write on worn, faded bits of paper, where all the world's most precious scribbles have been collected.

    What I will not do is sit crumpled and forgotten in the corner, watching a stream of throwaway doodles rush past...

    and wondering why my victory has been stolen by a world that wants us to live the wrong way round.



  • Tale of a Cornish Carer.

    by User145767 on 12 March 2010

    Hi everyone and fellow bloggers, being a virgin blogger I'll use this first post to introduce myself.

    I'm Tony and I am a full time carer for my young adult daughter hereafter known as 'G' who has Downs Syndrome and increasing mobility issues. I also cared for my late wife who had Motor Neurone disease and sadly died when 'G' and her younger brother were still young and it goes without saying it was a terribly difficult time. Now however my son has completed his masters degree in Archaelogy although he can`t find work in that field (excuse the pun) and he is working in a call centre but at least its an income for the time being.

    I too have been studying in my 'spare' time and I am currently undertaking my finsl course to obtain an Bsc (hons) degree with the Open University which has been challenging to say the least, but it's a personal achievement for me, I doubt if I'll ever use it in a career but it has been and still is interesting and I have made many 'virtual' OU friend along the way. If any other carers are thinking about Open University courses then I would encourage you to do so, the OU are very supportive of carers and understand the demands we are under.

    'G' attends a local day care centre which she greatly enjoys and takes part in various activites. However here in Cornwall the Day Centres are under threat of closure which is an ongoing issue at the moment.

    As a carer I'm keen to encourage greater awareness of what help and support is available to carers as there is without doubt some excellent pockets of support there form the NHS and carers organisations, but it is without doubt a postcode lottery, but that can be left to another day!

    I'm looking forward to popping in and sharing my thoughts with you.



  • The rat and the tortoise

    by Hazel2 on 11 March 2010

    If my beloved is like a tortoise, then I am like a rat in a burning maze, unable to find the way out.  (There may not be a way out!)  Tearing around, unable to escape.

    Aware of this, I take walks in the spring sunshine, try to relax with some reading, do repetitive chores to reduce the tension.

    The Great Survivor is well just now, nothing is happening on the home sale front, and we are gently getting rid of surplus STUFF.

    More people are pleading with me to consider whether moving is a good solution for us.  Partly because they are kind enough to value our presence in the community.  I am listening to them.  And checking with my beloved - does HE still think we should downsize?  He always says yes.

    It is like the Serenity Prayer, God give me the patience to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference.  Ah yes, the wisdom.  Have we got that?  

    Moving from a detached home with all its costs and responsibilities to a 'sheltered' flat does seem wise at this stage.  Yet others don't seem to think so....


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  • Hi,


    My name's John. I am a writer (mid-40s) living with my parents on the Wirral.  My dad has had a few things to deal with over the past few years (involving various trips to hospital, operations, etc) thelast of which was a stroke he had a couple of years back, and my mother has been dealing with increased mobility problems over the past couple of years.  She now uses a zimmer frame pretty much all the time, and it's well over a year since the last time I got her out for a drive around (she has had a couple of falls in the past couple of years but luckily didn't break anything on either occasion). 

    I was asked to write a piece a little while back about how being a carer affected my writing.  The piece was not used (I'm not actually sure the publication I wrote it for actually materialised either, which is often the way with new publications).  But a few people in similar situations seemed to identify with it, so I guess it makes as good an introduction as any:

    It never fails to intrigue me just how much of my life has been lived in the gaps between all those things I am actually supposed to care about.

    There are bullet points you're supposed to point to, where people can see your achievements as a productive member of the human race. But me? I tend to point to blank spaces, in the hope that those people who truly matter to me can see the treasures hidden there.

    I guess that's one of the ironies of the word "carer" - when you become one, it can lead you to seriously reassess what it is you actually care about, and how you choose to define your place in the world.

    I have made my fair share of conventional moves along the way, gathered a few respectable academic qualifications, but most of my real achievements as a human being have been very small, intimate ones. If I have learned anything along the way, it is that this world really is best tackled one soul at a time.

    That's what caring for somebody is about - reshaping the world through small victories. At the end of the day, after all, these are the victories that linger in the soul, while the other stuff gets framed, hung on the wall or scribbled into the history books.

    Being a carer teaches you that the most heroic things you can do for somebody are often the most dispiriting. They don't tend to leave you feeling much like a hero. Instead, you usually wind up feeling pretty shabby all round. You'll almost certainly end up feeling exhausted at times - sometimes physically, sometimes emotionally, frequently both - and the wellsprings of anger you'll discover inside yourself can be quite astonishing.

    Even worse, the anger will usually rise to the surface when somebody thinks they're being desperately helpful.

    In a perfect world, of course, people will understand this. They'll be able to figure out that you might not have been too thrilled to hear their pearls of wisdom after spending a day sitting in the hospital waiting to see if your mother has broken something after a nasty fall, or helping somebody make a much-prized trip to the bathroom so that they can savour a little bit of dignity and save you from emptying a commode again, or dealing one of several dismal scenarios best left to to the darker stretches of the imagination.

    Another thing the caring experience teaches you, if you hadn't figured it out beforehand, is that strength is often defined by your ability to stick around and deal with an awful situation - not because you wouldn't dearly love to walk away from it, but because you know that somebody you deeply care about is in no position to escape with you. Nobody likes having their power taken away, and it can be horrendous watching that happen to someone else, seeing a piece of their identity get pulled from under them like a treacherous rug. Perhaps they aren't able to take a shoe off, or stand up long enough to put a skirt on, or take that short walk to the bathroom they handled so well yesterday -

    or perhaps somebody seems to have turned all the microphones off just when they figured out what it was they really wanted to say.

    These themes of hidden strength and vulnerability have often run through my work. In many ways, they have very much determined my chosen path as a writer, my tendency to give stories away, to write pieces for people on a one-to-one basis. To make a meaningful connection with another person's soul is as good as it gets.

    Sometimes, that person is my mother, who says that one of the things that keeps her going is the joy of reading some new piece of mine each day, of seeing where the sentences have taken me.

    For now, she is my storybook.

  • The cruel wife

    by Hazel2 on 28 February 2010

    Our plans move ahead.  The house is up for sale and we are looking for the right kind of environment to move to.

    When people first hear the news they are horrified: to uproot him from his lovely home of eleven years, separate him from his friendly community, force him to give up his garden, his period furniture, his books - just when he might only have a couple of years left if he is lucky; how mean is that? What kind of a mad bitch am I?  Simple answer.  One at the end of her tether.

    Usually they begin to understand when I explain.  It is a mutual decision, we both feel the time is right, and he wants me to be less stressed and less burdened.  What we both want is to have some good months/years together before 'the end'.  If I am going to remain devoted to him, as I am, then everything else will have to go.

    Those who know his independent spirit, kind nature and broad mind can't bear to think of him 'trapped' in a retirement flat with only frail oldies for neighbours.  They may be right so no decisions have been made.  (Of course he is a frail oldie himself, well worth having as a neighbour).

    Meanwhile, we wait to see if someone wants to buy our house, and we are getting seriously into the business of discarding belongings.  There are organisations out there who make it very easy, like charity shops who will collect, and auctioneers who will take everything for the price of the removal van.

    The sun is getting brighter and warmer, and the pressure seems to be easing.  And best of all the Great Survivor has coped with the second round of the Six Nations will no ill effects.  (Another of his survival strategies is to believe that aqueous cream will sort out any skin problem including eczema - the placebo effect is truly amazing!)

    More in due course,



  • Life with CJD

    by Caspar on 24 February 2010

    Francesca has a genetic form of Creutzfeldt-Jakob disease (CJD) and Colin's wife was diagnosed with sporadic CJD in 2006. In our video, they explain how it affects their lives.

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  • Will he survive the Six Nations?

    by Hazel2 on 17 February 2010

    The Great Survivor has come through near fatal injury in WWII, open-heart surgery at the age of 85, a badly broken hip with a long struggle with MRSA to follow last year, and a general stoical acceptance of the worst old age has to offer.  Does he fret about this? No.

    But when England is struggling to maintain its place in the sporting world (Cricket, Football or Rugby Union) he becomes a nervous wreck.  

    I noticed he had a nasty eruption of eczema all over his body, bleeding itchy sores.  What, I wondered has brought this affliction on?  Something he ate? (He is allergic to Kiwi Fruit).  But no, we had had nothing out of the ordinary to eat.

    However, he had been glued to the TV watching the rugby matches of the Six Nations for the weekend just past.   And I remembered he had had a similar outbreak when there had been a 'friendly' tournament a few weeks back.

    He is a puzzling chap, bless him.


  • The future?

    by Hazel2 on 10 February 2010

    My beloved, The Great Survivor, reminds me more and more of a giant tortoise from the Galapagos islands: slow, deliberate, cautious, determined - and getting a wrinkly skin all over.  He still has his wits, thank goodness.  A member of the extended family who recently lost her husband (to pneumonia) who had Parkinsons, met us recently and said, on parting, 'It will only get worse, you know'.

    When I have trouble coping with the responsibilities of caring and running the home, I think that perhaps a wonderful nursing home would be the answer for him, with professional, trained nurses and carers looking after his every need.  Then I think: who on earth could give him such constant attention just when he needed it?  No carer in any place I have ever visited.  My being one-to-one with him makes up for all my deficiencies as a carer.

    But we can't go on like this or we shall both be invalids.

    The Great Survivor is also very mature and thoughtful.  Although he loves his home, he has agreed that to downsize would be a good plan, and sooner rather than later.  A move to a flat or retirement complex where many of the burdens and responsibilities are taken care of, or at least shared.

    Friends say  he is too old or frail to cope with such an upheaval.  (And we can all think of examples where the frailer half of the couple dies before the big move takes place leaving the other to move on alone.)  The Great Survivor reckons he could survive this (big move) too.  So we are looking, and meanwhile I am going to start the shedding process, getting rid of STUFF which we will not be able to take with us.  

    He is doing well at present or we wouldn't even consider it.


  • Equipment on Loan

    by Hazel2 on 30 January 2010

    Recently a District Nurse came to update our inventory of equipment loaned to The Great Survivor to help him cope with daily life.  No wonder the NHS has financial difficulties:

    Bed lever (for helping get in and out of bed)
    Propad mattress cover (for fragile skin)
    Propad cushions - one for recliner chair, one for wheelchair
    Walking Sticks
    Walking frame (lightweight for indoors)
    Walking frame with wheel, seat and brakes (for longer trips)
    Transit wheelchair with power pack attached (so that I can push it) for even longer trips
    Perch stool in bathroom
    Commode (when he is unable to reach bathroom)
    Loo frame (to help with sitting down and getting up again)
    Foam boot to protect foot in bed from pressure sores (not much success with this)
    Splint for his right hand (which is curled tight shut - someone's contracture)
    Knee supports to help keep his old knees from buckling
    Little table on castors for chair or bedside 

    Plus we are waiting for some gadget to help him stay safely in bed at night.

    What other country could provide all this on trust at no cost?  (And this on top of his huge monthly delivery of meds and disposable equipment).

    We count our blessings.


  • 'The Old Bleeder'

    by Hazel2 on 28 January 2010

    Sometimes I call the Great Survivor "The Old Bleeder" instead.  Here's why: this morning I noticed spots of blood on my duvet cover, the side nearest to HIM.  Upon investigation, I found a spot on the bedsheet and then examined him for wounds - this might be a spot on his face, a scratch on the thin skin of his forearms, some little wound.  Sure enough, the sleeve of his nightshirt was quite bloody with dried blood.  At some point in the night he had had a bleed.  When he was showering I found the cause: a spot on the thin pale skin of his upper arm.  He has these innocent looking spots all over, and at any time they might decide to bleed a little (especially as he has to take aspirin for his heart, and as he likes to scratch an  itch!).

    Occasionally the bleeding is more extensive and therefore - to me - alarming.  (He doesn't bother).  There was the morning when he called from the bathroom (where he was having a quiet wee) to say that he was bleeding.  I imagined blood in the urine (we've had plenty of experience of that too). But when I went to look there was a trail of blood leading back to the bedroom up to the bed itself.  With trepidation I pulled back the duvet.  It looked as if someone had been murdered in the bed!  (Nurses will tell you that a little blood can make quite a show!).   The cause: one toenail had scratched the heel of his other foot and he had been quietly bleeding through the night.

    These episodes usually occur when I have just made the bed with freshly laundered sheets!

    Why is his skin so fragile?  Age and diabetes I guess!

    At least we can expect help to cope with the restless legs: a technician from the Social Services is coming to see what might be rigged up to keep The Old Bleeder in the bed, rather than walking out of it each night.


  • I've been really touched in the last couple of days by the postings of Norrms on our site for adult carers,  Norrms is living with Alzheimers Disease and has been sharing with us his moving insights into the early days of Alzheimers, both before and after diagnosis.

    What has been really interesting is seeing how, despite our website being aimed solely at carers, rather than those with the illness / disability, the carers who use it have welcomed the very personal account of one person's experience with Alzheimers.  It makes me think of the gap that can exist between having the illness and caring for someone with the illness.  How hard it must be for any relationship to cope with the diagnosis and share, really share, what it means to both parties.  Norrms has given all of us on a unique view into, as he calls it, "the fog", of Alzheimers and I can only imagine how helpful this may be to people who are themselves coming to terms with the diagnosis of a loved one.

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  • The critical timing of meds

    by Hazel2 on 25 January 2010

    My beloved, the Great Survivor, decided he would delegate his care to me.  He just concentrates on being positive and taking each day as it comes.  This is an essential part of his survival strategy.  Sometimes it causes tension between us:  Parkinsons medication works best if given at regular intervals (I'm talking about Co-beneldopa).  Moreover, he has to take the last dose no later than 6pm, or he suffers awful night terrors.  Working backwards from 6pm, this means he should be taking the morning dose, with food ideally, around 8am. 

    Whether it is Parkinsons or merely his age (90), he is increasingly sleepy in the mornings and not motivated to get up.  I got really aggravated recently - and told him he was making it difficult for me to care for him.

    He says he'll fit in with whatever I want to arrange.  'It's not what I want', I tell him, 'it's what's best for you'.  He gets all upset.

    We're trying a new routine now.  Morning cup of tea around 7am followed by shower and dressing at 7.30 (the caring procedures take us over 1/2 hour) so then he's ready for breakfast around 8.10am.  And he takes his first dose.  Then he lies back in his recliner and nods off while listening to Radio 4 (for most of the rest of the morning!)

    It is helpful for me to put this down in writing.  I can see already, from the few entries I have made, that - despite his multiple health problems - it is Parkinsons that is the most challenging as far as care is concerned.


  • The Miracle of Convenes

    by Hazel2 on 23 January 2010

    Can anything good come of falling a breaking a hip when you are 89?  In the interests of balancing negative with positive, the answer to this is YES.  We discovered convenes!  The Great Survivor (TGS) had to cope with nocturia (lots of urination in the night) - possible due to Parkinsons, or prostate.  Up to four or fives times per night he would struggle to the bathroom for a wee.  After his fall - which just happened one day for no reason - he could no longer get up to go to the loo, and once he started to get his mobility back, it seemed a dangerous thing for him to attempt.

    At first I was trying to help him use a urine bottle, but this was really tricky, and as TGS was anxious not to wet the bed, he would ask for the bottle up to 6 or more times in the night.  We were going spare.  Then a nurse or care worker mentioned convenes:  continence sheaths which attach gently to the penis and have an outlet pipe which fits onto a urine bag placed beside the bed.  He fills his urine bags to the brim every night and we can both sleep peacefully the meanwhile.  Of course, he is now dependent on it.  His bladder control in the night would no longer be assured.

    Yes, there have been accidents, but they are a small price to pay for the luxury of being able to sleep undisturbed.

    Hooray for convenes, we say, and thanks to the NHS!


  • Restless Legs

    by Hazel2 on 22 January 2010

    As usual, last night was a disturbed night!  The Great Survivor (TGS) is an active dreamer and has restless legs particularly.  Active dreaming goes with Parkinsons apparently.  He is deeply asleep but he swivels sideways and his legs fall off the side the bed risking injury and a possible fall to the floor.  I wake up in a panic and manhandle his legs back into bed.  Recently I have been piling pillows to the side of his legs on the edge of the bed which helped.  But last night he kicked them to the floor twice!  I think he was playing football.  He often does in his dreams.

    Fortunately we are expecting a visit from an occupational therapist who will consider options for gadgets (maybe like bedside rails) that will keep the TGS in his place.  We do have some laughs along with the gritting of teeth!

    Enough for today!


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The carers bloggers

Tony aka User145767 is a full time carer for his daughter 'G' who has Downs Syndrome.
Scribbler John
cares for his Dad, who has had a stroke, and his Mum who has mobility problems
 cares for her 90 year old husband who has Parkinson's disease and diabetes
Deborah Packenham
has a son with autism and is National Autistic Society (NAS) Branch Officer for Barnet
Sam S is a youth and community worker for The Princess Royal Trust for Carers
Kerry Page has 4 children between aged 20 and 10. Her youngest two boys are both severely disabled with Fragile X Syndrome and autism
Wendy1 is from Chill4usCarers

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The opinions expressed by the bloggers are their own not those of the NHS. If you have any concerns about your health or of those in your care you should contact your GP or use our medical advice now section.

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