SallyP

Retroladytyping …

Memories, walking, talking – shared experiences – updated for 2017!!

14355604_1140821515985682_312744029246548764_n

Liz, Sally, Jenny and Kathryn and a cast of hundreds walk to remember …

As I said at the end, we will do it again … and lo and behold, the time has come around again.  This year, 2017, the Walk is taking part in Victoria Park, Bath on 3rd September.  Liz and I are in what passes for training for us … our trainers have been dusted off; our Alzheimer’s Society t-shirts have arrived.  They are a rather attractive shade of turquoise this year, complete with the new Alzheimer’s Society logo.  We are looking forward to the day as we always do.  Even more we are looking forward to being in a group of people all with the same aim:  to raise awareness of dementia, while raising money to support all those who are affected.  My story is below.  Everyone on that walk has a story to tell and that is what makes the day so special.  Alzhiemer's Society logo

I have, shamelessly, posted  link to my Just Giving page for this year at the end of this post.  Shamelessly, because I care so much about the Alzheimer’s Society and so much about doing a little bit to help alleviate its effects on everyone who experiences it, personally, as a relative of a loved one, or as a carer.  If anyone would like to donate, that would be very kind and very much appreciated. 

https://wordpresscom5722.wordpress.com/2016/09/19/memories-walking-talking-shared-experiences/

________________________________________________________________________________________________

Yesterday, in Bath, a very memorable event took place.  Among all the Georgian, Roman, retail and various tourist activities, hundreds of people assembled on Bath Rec (the home of Bath rugby – another of Bath’s claims to fame) to walk 10K (6 and a bit miles in old money) to achieve three things:  to raise awareness of dementia in all its forms, to remember those affected by this awful illness and to raise funds for the Alzheimer’s Society.  The Society does valuable work to support people who have dementia, their families and friends, to fund research into causes and, hopefully one wonderful day, to find effective treatments and a cure.

I have taken part in two Memory Walks before this one, which was the inaugural one in Bath.  The Bath Memory Walk  was  extra special because I had the company of my friend, Liz, the other proud Grandma of our shared grandson, also Jenny and Kathryn, walking in memory of their Nan.  We didn’t see too much of them after the start – they are young, so went at a pace which we didn’t attempt to match.  We know our limits and keeping up with two twenty-somethings is probably several steps too far and fast.

I do these Walks, as well as volunteer with the Alzheimer’s Society, mostly in memory of my Mum, who died with dementia just over two years ago.  As a family, I know we, being ignorant of what dementia actually means, didn’t  always do the right things by our Mum.  We didn’t know, so how could we?  However, leaving aside any regrets, I am determined to do what little I can now, as well as finding out as much as I can about dementia, its progress and what can be done to help.     I’ve also, again with Liz, done a couple of 10K actual RUNS.  Those hurt and may not be repeated, so onward with the Memory Walks – they are doable and relatively pain-free.

Back in Bath, on a beautiful, sunny Autumn morning, so perfect for walking and an all-round feel-good day, we arrived, did the hug thing, didn’t take part in the crowd warm-up as we were so busy chatting about said shared grandson, looked at the Memory tree and added my leaf,  met up with Jenny and Kathryn,  my nieces, two of my Mum’s grand-daughters, who walking in memory of their Nan, my Mum, and … off we went,  shuffling through the Start line, in the midst of the many walkers with a shared aim – to do something to remember and  support those with experience of dementia.

Before I write any more, I must mention, again, the Memory Tree – at the site of all Memory Walks there is a Memory Tree – a large white leafless twig, with  img_0375many fluttering labels attached.  Walkers and friends are encouraged to write the name of a loved-one,  a memory and a reason why they are walking that day on a blank label, then attach it to the Memory Tree.   It may sound a little twee, but it is a very moving sight.  Some labels  mention a person’s name, some mention more, but all are special.  To see that, on a sunny day, with the label-leaves fluttering memories of so many people is very moving, as is hearing people reading out the thoughts of others.

Returning to the Walk … after the initial shuffling past the Start, participants spread out and followed the guidance of the wonderful volunteer Marshals.  We haven’t been assisted to cross the road for quite a long time, but we were very grateful to  those high-viz ladies and gentlemen who  were great at holding up traffic, directing us across and thanking each and everyone of us.   The drivers must have wondered at the diverse group of white t-shirted people walking in a  disorderly procession with accompanying dogs, toddlers and a couple of people with zimmers – Memory Walks are like that.   Hopefully, those car-bound people  will find out more and maybe even support us next year, as might the slightly bemused shoppers and tourists.

The rest of the Walk went in a sort of haze … Liz and I had lots to talk about:  our Grandson, including the showing of photographs of course, our parents, our philosophy of life  – stuff like that.  We are never short of a word or seven are Liz and me. We  passed some wonderful architecture in the city and  saw some nature in the parks among other  delights which Bath has to offer, including a great many tourists, but we were too involved with chatting and the purpose of our day to take much notice.   All around us were people supporting the same worthwhile and meaningful  cause, all with a tale to tell, some chatting amongst themselves, some quietly walking, most with personal experience of dementia, some directly, some through their loved ones, some through their patients.   Everyone was wearing a placard saying why they were walking, some with photographs, some saying “For everyone with dementia.”  Mine was personal – my Mum, of course.  IMG_0367.JPG I have worn this one for each Memory Walk, although we receive a new one to personalise each year.  Seems wrong to throw it away and start again.   I was really touched that Liz’s sign said “I am walking for Sally’s Mum.”  That was lovely.  Thank you Liz.

As well as Mum, I was thinking of the people I see weekly in our local hospital, who are coping with the multiple and unsettling difficulties of being physically unwell and  in hospital, while having dementia.  Another person who came to mind often was the amazingly brave, stoical and feisty lady I visit, also weekly, at her home.  This lady, as well as living with dementia, is a demon Scrabble player.  The Memory  Walk was for you too,  and I will beat you one day.  My hospital and home visits are each part of the Voluntary Befriending Scheme run by the Alzheimer’s Society – another example of the support they offer, along with Memory Cafes, Singing for the Brain and on-line support through its Talking Point Forum.

I like to think that we were also walking for our shared Grandson and our children, in the hope that, soon,  the shattering effects of dementia and the erosion of personality that it brings are no more.  I wish … and hope.  Meanwhile, we do what we can to just do something, however little, so that those with more knowledge and power can do more of what they already do so well.

At the finish, we collected  our medals and a free bottle of water, which we certainly needed after all that talking walking.   My medal will go in my Mum Box, with photos and other treasures, the label I always wear on these Walks and the other Medals from past Walks.

Afterwards, back to normal everyday Sunday life – we met with our husbands and went to the pub for Sunday lunch.  The day was completed when Liz’s husband, Phil – our un-official photographer, posted some pictures on Facebook.  Thanks for that Phil.  For once, I shan’t delete any unflattering shots.  Liz and I are proud of what we did.  It was ‘just’ a Walk, no more than a long stroll in the park really, but it carries so much meaning and purpose, so is special to us and, I think, everyone who takes part.  There are others throughout the Autumn at other countrywide venues if anyone else is interested in taking part.

14390750_10209508944057015_3114158756544229302_n

We did it (and will do it again next year)

https://www.alzheimers.org.uk/

https://www.memorywalk.org.uk/

https://www.justgiving.com/fundraising/sally-pillinger3

 

 

 

 

 

 

 

 

 

 

 

 

1 Comment »

Magic kisses

 

 

magic kisses

Before I get into this post properly, I’ll just say that I’m not writing it so anyone can say anything supportive or reassuring – please don’t; I know the natural response is to say I did my best, but …

Over the past week or so, I’ve had a problem dropping off to sleep … nothing significant, just that I’ve been full of cold, so breathing while lying down has been a challenge.   During the wee small hours, when I was reluctantly awake, I remembered my mum’s magic kisses …

When we three were children and had problems sleeping, we would request, and be given, magic kisses.  These were gentle, barely a touch with her lips, on each eyelid.  The magic was that, once bestowed, we would have to keep our eyes closed till morning.  It worked.  It really did.  My mum had magic powers.  (I’ve mentioned those powers in an earlier post, in relation to her cures-all- ills cakes.)

Some of you will know that Mum died two and a bit years ago, after a struggle with dementia.  She was ill for quite a while before I was strong enough to recognise that and to stop coming up with ‘normal’ reasons for her behaviour, distress and confusion.  In my defence (and that of my two siblings), we did not know much about dementia; in fact we knew next to nothing and what we did know was based purely on hearsay and anecdotal evidence.    We thought it was a natural process of ageing (Mum was 87 when she died) and  meant increasing absent-mindedness.  If only.  We put her  symptoms down to that and her profound deafness – another problem which we didn’t properly address due to differences of opinion with our father.  It was more comfortable for us all to do that.  Once a child always a child maybe, but that’s no excuse.

There were also several major family issues and  history which confused us and meant that we were unable to detach ourselves enough from those and our memories to deal with Mum’s increasing distress.  I wish that I (I won’t speak for my siblings)  had behaved like the grown woman I was, but old feelings were never far below the surface.  I allowed mine to affect how I dealt with a very adult and even frightening situation, in which the balance of power had, or should have, been reversed.    I wish I hadn’t.   I wish I had been stronger.  I would now be able to advise others to do just that, to accept the dramatic changes in family dynamics, but I couldn’t do it myself.  I should have.

I now know that a great deal of Mum’s distress, and the horrific events surrounding her being sectioned could have been avoided.  That long 7 months while she was incarcerated in a secure unit, where she was distraught, hallucinating and clearly extremely frightened, alternating with being seemingly catatonic due to the drugs she needed to keep her safe, might have been avoided.  I, as the so-called ‘sensible one’ of the three,  (the mysterious ‘everyone’ said so; therefore it must have been true) should have taken responsibility and done something before her illness manifested itself so  that there was no safe alternative to her being sectioned with all the horrors that entailed for everyone involved.

My brother had been the  ‘naughty one’ while we were growing up; my sister was very much our baby sister, so I should have been able to take charge.  They have both since  fervently denied that I should feel any more responsible than they  do, but I do.    In fact my brother is seemingly philosophical about Mum’s illness:  it’s happened; it’s past and no point dwelling on the circumstances.  All we can do is learn, realise we did our best and move on.  I wish I could be like that.

Once events had taken their catastrophic turn, we were all equally involved and played to our strengths; my brother dealt with the administrative side (there is a great deal of that); I mostly did hospital visits.  He visited too, but some of Mum’s symptoms and the ways in which her distress manifested itself were extremely difficult for a son to witness.   He did more than his fair share by visiting my father who, by this time, was thoroughly confused, understandably, by the turn events had taken and whose behaviour was consequently difficult to deal with.  I couldn’t; my brother did. Family dynamics and history prevented me.  My sister supported us all especially  when we called for help, even though she lives in a different part of the country.

Thankfully, and largely due to help from a wonderful Community Psychiatric Nurse, Mum’s final few months were spent in a lovely, caring and understanding environment.  Vicky (the CPN) supported us through the process of finding a Nursing Home, where Mum was given the love and respect she deserved, even though she was probably, by then, sadly unaware.  I  eavesdropped shamelessly when the staff were carrying out personal care for Mum and their attitude was always one of complete respect; they maintained her dignity; they showed tenderness and understanding.  They were incredible people.

On my part, however, no amount of visiting Mum, caring, feeding her, comforting her while she was sectioned and after, explaining her needs to those caring for her,  attempting, and mostly failing, to deal with her distress will make up for not being there when she really needed help.   I still feel responsible for how my mother experienced the last few years of her life.   I always will.  Yes, I did what I could at the time, but her extreme distress could and should have been avoided.  Things did not need to get to that point.  If only I had been able to detach myself enough to do what I would now advise anyone else to do.  Recognise there is a problem; disregard family dynamics; ask for help; make a fuss until someone professional listens and that help is given.  There is no cure; there is no treatment, but events don’t have to follow the path they did for my Mum.  There is, however, I have since learned, ways of mediating the dreadful effects of dementia, so that the extreme distress and fear experienced by my Mum can be avoided to some extent at least.  Mum could have been one of the old ladies enjoying being in the sunny garden at the Nursing Home, laughing at the antics of staff playing rounders, as others were one day when we visited.  Mum was in bed, unable to speak or respond at all.  Again … if only.

Just to compound that feeling of not doing what I should have done,  and arguably far, far worse,  I made the wrong decision about my priorities, not quite realising, after a conversation with her Nursing Home, that the 7th January 2014, two days before her 88th birthday,  would be the day she died.  I visited the day before with flowers and cards.   It was convenient; it was a Sunday and after all, I reasoned, Mum wouldn’t know the difference.  Monday 7th  was the first day back at work after Christmas and I didn’t really want to go back; I also didn’t want to ‘use’ my Mum as an excuse for not going back on that first day.

Consequently,   I was not there, even though I’d said I definitely would be.  I didn’t read between the lines of the   telephone call before I left for work.  I questioned my motives and priorities instead and I shouldn’t have.  I should have gone with my gut reaction and been with my Mum when she needed me.  She had been with me, but when she needed magic kisses there were none.  She wasn’t alone; a wonderful Care Assistant was with her and she described how Mum had been when she died  when I went to be with her having had the worst phone call of my life, while I was at work getting my priorities wrong.   She stayed after her shift ended to ask me how I wanted her to be dressed and took the trouble to phone me that evening to say how beautiful Mum had looked when she was taken to the Chapel of Rest.  She didn’t; I know she didn’t; she hadn’t for quite a while which is the harsh reality of dementia,  but it was still lovely of the Care Assistant to reassure me that all was as well as it could be.

Despite all the efforts of that kind, caring person, I will never get that day back.  No amount of  visiting during the time leading up to that day, or too late chats with someone else,  will ever make up for that omission and faulty decision-making.  Hindsight … if only again.

However, despite all that, it struck me while I was struggling to sleep, that it has recently become possible, sometimes even effortless,  to remember happy times, times when having my Mum made me feel safe, warm, comforted and able to experience her magic powers.  Those moments happen without trying and usually when my defences are down, as they were in the early hours. It’s taken a while, but that initial rawness and ongoing guilt is beginning to take a back seat.  I know it won’t always be a straightforward process, but, at last, there is hope.  I will always have regrets, of course I will, but they won’t change anything.  The only thing which can change is how I deal with them.  They are beginning, just beginning, to take their place in the recesses of my mind, while other feelings, memories and gratefulness to the staff at that Nursing Home float to the surface.

  closed-eyes

xx

2 Comments »

The Legacy

IMG_0506 (3).JPG

Near our back door we have a broken pot which contains various gardening implements.  These are proper implements, some dating back to the 1950s, as their cracked handles and rust illustrate.  They have been used, neglected, abandoned in the rain, buried in mud and rescued, but never replaced.  Some may be  vintage; some are just plain old; all are useful and are used – frequently.

We acquired them from our parents, now sadly no longer with us.  (Sad, but not tragic – they all lived into their 80s and 90s).  They were all keen gardeners and we were lucky enough to be given free run of their garages and garden sheds.  We toyed with the idea of a car boot sale but these, and other,  old, damaged, but still useful tools now stored in the garage, had much more than monetary value for us, and still do.  I’m not sure where old ends and vintage begins, but these items are more valuable than they look.

Young and old hands have grasped those handles over many years, dug, tugged, raked and hoed to produce gardens which, we think, were worthy of more than a Chelsea medal.  Those gardens  fed us, entertained us while we ‘helped’ as children, kept us busy and out of mischief and gave our parents a hobby well into their old age, as well as providing a sanctuary  when indoor life became too much to deal with.

Now they are used by us and our siblings in an attempt to create a similar place, with varying degrees of success.  It can safely be said that I am an enthusiastic gardener, but will never have the skills demonstrated by my parents, or in-laws.  However each time I grasp one of those muddy damaged handles and use that rusty trowel, I remember them and their gardens; each time I use that extra large, and very strong, yard broom, I bless them; each time my husband uses his work bench, customised with old lino,  and vice  – old and very, very heavy – which he inherited from his father, he remembers his dad.  I’m not quite sure why he needs a vice; I’ve never seen him use it, but he loves it and insisted on transporting it and the workbench from his dad’s garage to ours, enlisting the help of a neighbour to heave it into position.

There is a rusty sweet tin in our garage,  which used to belong in the Aladdin’s cave of my father-in-law’s garage.  It contains all manner of nails, screws, tacks and even the occasional rusty coin.  I have briefly considered going through it, sorting out what is useful, and replacing the rusty tin, but I can’t; I just can’t, any more than I could replace the several trowels, rakes and forks which we have by the back door.

 

forget me not

 

 

2 Comments »

Keygate?

keys

Several days ago a “breakdown at the interface between attention and memory” (Schacter) caused a tsunami of stress, self-doubt, fear for mental health, paranoia and possible marital breakdown  in my house.

Wednesday evening.  It had been a long day:  difficult drive through  hailstorm, meeting,  too much cake,  too much coffee, traffic jam, in need of comfort break.  Home.  Throw bag in direction of stairs.  Remove coat. (Take comfort break). Cook meal.  Speak to husband.  Television.   Normal.

Thursday morning. Asda shop.  Boots on, coat on, pick up bag, find ‘green’ carrier bags,  open front door, left hand into handbag  …. no keys.  Calm and breathe, check bag pockets, check coat pockets.  Still calm. Remove old till receipts, bus tickets, out of date money-off vouchers, purse, credit card wallet, husband’s spare car keys (why have I got those?).  Calm.  Think.  Tip bag upside down and shake.  Silence. Hold breath.  Think.  Breathe.  Think…  Check yesterday’s coat pockets, check today’s coat pockets, check all coat pockets, check coats under stairs not worn for months, check husband’s coat pockets, check downstairs loo,medicine cabinet, cleaning products basket.   Logical thinking.  Retrace steps.

S-t-e-p-s … three, from front door  to telephone shelf where bag lives.    Upstairs.  Increasing  panic.  Breathe.   Check laundry basket (why?), bathroom, under bed, airing cupboard.  Downstairs, check fridge, washing machine, microwave (why?), cupboards, side of chairs, under chairs.

Rising panic.

Self doubt.

Think.

Calm.

Breathe.

Must have opened front door.  Check door.   Check car.

MUST HAVE LEFT THEM IN FRONT DOOR OVERNIGHT!!!!!!

Re-check door.

Search under hedge by front door.

PANIC.

Breathe.

Calm.  Phone husband.  Has he picked them up by mistake.  No.

Rant at husband to check his car, pockets, etc.  No.

PANIC.  Think.  Door hadn’t been opened overnight.  ‘Someone’ may be waiting till house is unoccupied.  Phone locksmith, arrange for locks to be changed – tomorrow.

Locksmith arrives.  Changes locks and reassures.  Not reassured.

Occupy self.  Washing. Hoovering.  Ironing.  Not thinking.

PANIC.   My car?    Arrange for man with computer to source and programme new car keys in three days time.

Check Alzheimer’s Society website – symptoms of dementia.  Read reassuring messages.  Not reassured.

Google “Memory lapses.  What is normal?”  Not reassured.

Shout at husband.

Buy new keyrings from Amazon.  Comfort shopping.

Normal life.

Saturday evening.  Husband, “Shall I check bag one more time?”  Me, “If you like, but they’re not there.”  Shrug.  Husband, “Are these the ones?”

The End… nearly …

The plus side:

  • I’m £200 better off, as no need for man with computer who sorts out car keys.
  • Front door lock which has been awkward for years now operates perfectly.

 

Thank you Tom Tidal for the phrase “Keygate.”

circ3

https://en.wikipedia.org/wiki/The_Seven_Sins_of_Memory

https://www.alzheimers.org.uk/talkingpoint

 

Leave a comment »

“Where words leave, music begins”

 

“Where words leave, music begins … “  Heinrich Heine in the late 1700s

music bird

I spend some of my spare time, under the auspices of the Alzheimer’s Society,  befriending some of those who are living with dementia and coping with hospital admission simultaneously – either is difficult; together …I can only imagine the confusion, uncertainty and fear which can be experienced by those who had formerly been articulate, capable and confident people.

Recently I met, in hospital,  a lovely elderly, and very beautiful, lady who, as part of her dementia was coping with aphasia, the effects of which meant she struggled to compose the random thoughts in her brain into coherent communication.  However, I had been told that this lady had been an opera singer and loved singing still.  My singing ability is more enthusiastic than competent, so I was not sure how our meeting would progress.  I love talking with people, but this was different.  I didn’t want to spend the time talking ‘at’ her.  That would be pointless.  The idea was to engage her in whatever way was possible.  I had met aphasic children in an earlier role, so I decided to give it a go …

On entering the ward, I saw the lady looking very dignified, with the most beautiful white hair, but also looking very confused and worried.   I introduced myself, smiled and waited, talking about such mundane things as the weather, without much response … then I mentioned that I had heard she loved singing …

She flung her arms wide and sang “Yes,  how wonderful!”  I talked for a while about my limited knowledge of singing and classical music; then she said “Let’s sing!”  As I said:  enthusiastic, not competent, but with nothing to lose but my dignity, I sang with her – no recognisable song, just la la las, accompanied by extravagant operatic-type arm gestures from both of us.  My side of this duet was far from tuneful, but this lovely patient lady took it upon herself to attempt to teach me to sing in tune, or at least in a way which would harmonise with her.   She was patient, although she did giggle deliciously when I made strangled attempts to sing at the same pitch as her.   Eventually we had some sort of call and response duet going on in the corner of a hospital ward:  our own little musical world.

I gradually became aware that we were being watched.  Other patients, and some staff, were looking.  Slightly embarrassed, I let my voice tail off.  However, my wonderful, patient singing teacher was having none of it.  She sang “No-o-o, you must sing …”, so I did.   We were communicating – ok, in a slightly unusual way and it certainly got us noticed.  However, my new friend was not in the slightest bit embarrassed.  She was a singer; to her, I was also a singer and that was all that mattered.  She was happy.  I was happy, although slightly more self-conscious than her.  We had made a connection.  Speech could not achieve this.  Music did.

I continued to see this lady for several weeks and, each time, we sang to, and with, each other.  One day, just before Christmas, I was greeted in the Ward corridor by my lovely friend, wearing a festive red coat, ready to go home.  She sang from one end of the corridor to me at the other end of the corridor with no inhibitions at all.  When we reached each other, she opened her arms wide for a hug and told me she was going home at last.  I was pleased to know that, but sad that I would probably not see her again.

I hope she is happily singing away with those who are taking care of her.  I hope they understand.  I hope they are not embarrassed at singing with her wherever they are – in the street, in the supermarket, wherever …  I hope she is teaching them as she taught me.

As I said goodbye for the final time, she took both my hands, gave me a huge hug and kiss on the cheek and said “Thank you for the music.”

I can’t add anything more.

https://www.alzheimers.org.uk/volunteer

www.dementiapartnerships.org.uk/archive/tag/ruh/
 singing_brain_300
2 Comments »

Dr Who, dementia and an orange

peeled-orange

Those who know me will not be surprised to see the word dementia in the title of this piece, but probably not Dr Who or an orange.  I will attempt to explain:

My  Mum had dementia and my family witnessed her decline from this awful illness at close quarters.  At first we thought it was part of old age:  memory problems affect most of us to some extent.  However, it became clear that this was more than ‘old age’.  Her memory lapses were only part of the illness.  Anyone with experience of dementia, either personally or as a relative, will know that the person as we know them i.e. their personality, what makes them their unique selves, gradually disappears.   This happens while their physical self seems unchanged, for a time at least.    Mum was still Mum on the outside, but parts of her brain were gradually becoming damaged, so she did not seem like Mum.  We didn’t realise what was happening inside her.  We just knew that she was behaving differently and, above all, was frightened and confused. We saw her fear in her eyes, but we couldn’t deal with it.  We were frightened too; the unknown is frightening and our Mum wasn’t behaving as our Mum always had anymore.

The point of this post is to highlight a video made by Christopher Eccleston (hence the Dr Who part of the title) with Aardman Animations,  using an orange to illustrate the physical nature of this awful illness.

Each segment of the brain (orange) gradually becomes damaged until there is nothing left.  The presentation of the illness depends on which part becomes damaged and so affects perception, memory and behaviour.   When the illness becomes apparent to others,   there may be the feeling that, if only the person tries harder, calms down, rests, or just damned well listened to those caring for them, they could ‘sort themselves out’ and stop being ‘difficult.’  That was our experience, but I know, from talking with others since,  that it’s common to think that people with dementia can be reasoned with.  It’s not the illness; it’s them or, even worse, us.  We certainly used to repeat things many times (trying to conceal our sighs)  to Mum in the hope that we could convince her of reality.  You develop a lot of patience when you know someone with dementia, alternating with periods of complete exasperation for Mum and us.

I wish we had realised  that dementia is an irreversible physical illness then, rather than several years too late.  We would all have had a better experience of its effects, Mum most of all, because we wouldn’t have argued with her or tried to convince her of unimportant things like the correct day of the week.  Did it really matter?  Probably not, no, but we felt it did then.  We needed our Mum to be our Mum,  as she always was.  No matter how grown-up and seemingly mature we were, we still needed to be sure of our Mum.  Anything else is frightening.  It was for us; I can’t begin to imagine how it must have been for her.  Terrifying I would think; I fervently hope not, but I fear it was.

I think that the realisation that it is a physical illness, caused by damage to the brain, might help to remove some of the fear and exasperation.  In the same way as you wouldn’t expect an orange to reverse its decay (I was trying to avoid using that word, but I can’t think of a better one to illustrate the permanency of dementia),  it is far better and less stressful to accept the way things are and focus on what is left, so everyone benefits.  Physical illness is, arguably, easier to accept  practically and emotionally,  than an illness which shows itself as a change in behaviour with no visible cause.  That’s why the image of an orange slowing losing its segments is so powerful for me.

One (wonderful) day a cure will be found for dementia.  Until then I think that understanding it as an irreversible progressive physical condition is a huge step towards dealing with its effects.

Understanding and acceptance doesn’t mean giving up though … the Alzheimer’s Society website, link below, is full of information,   resources and coping mechanisms,  as well as offering unconditional understanding and support through its Talking Point forum.

http://www.bristolpost.co.uk/8203-Christopher-Eccleston-stars-Aardman/story-28547938-detail/story.html/

https://www.alzheimers.org.uk/

 

 

 

 

 

 

 

 

Leave a comment »

Motivation

Ok,  I am very new to this writing lark, so please be gentle with me.  Two of my friends have recently set up blogs on this site, so I thought – why not?  Why not indeed – well, because their writing is all I would like mine to be.  It is not and is unlikely to be any time soon.  Does that matter?  I don’t know and I guess I am hoping the answer is in the negative.

About me:  I have recently retired from work, having decided to commit myself to befriending work with people living with dementia, in hospital at present, but soon to be community befriending as well.   That makes me sound noble, but I’m not.  Friends have used words like ‘awesome’ – those were younger people; others have said “are you sure?” and “can you cope?”  Well, I guess I can, so far so good.  I’ve met some amazing elderly people, who never fail to make me smile and I hope I make them smile too.  Recently one lady was in fits of giggles at my identity badge!  I don’t blame her.  I feel either like laughing or crying when I look at it.  Tip to self:  smile, don’t grimace when having photo taken for something you are going to be wearing a great deal.  A bit of lipstick doesn’t go amiss either.

Back to the subject i.e. retirement/volunteering/dementia:  my mother had dementia.  Sadly she died two years ago and I know that I didn’t manage her illness very well.   We knew next to nothing about it, assuming it just meant memory problems.   Those of you who are aware, will know it’s so much more and can mean extreme distress and fear for all those involved – not just the person with the illness.  I had fantastic support from the Alzheimer’s Society online Forum, who saved my sanity during many a late night.  The volunteering, therefore, is a way of paying something back and righting the wrongs and misunderstandings of the past, so I am not ‘noble’, ‘special’ or ‘brave.’  My motives are mostly selfish.

Is that wrong?  I don’t know.

 

 

 

 

Leave a comment »