Friday 30 January 2009

"Emanuensis" .. have you heard of this word? ... I am it!!

Dear Mr Postman .. thank you so much for bringing another story about my mother .. to remind me ..

Yesterday .. I mentioned the story about "Emanuensis" .. and Mum quite naturally said to our Healing lady, who has done wonders for my mother, Hilary is my Emanuensis .. ie her Secretary, her dogsbody ... = the person who'll do anything necessary!

The vicar also came with a volunteer visitor lady (Hilary - just to confuse the issue!!) .. and I was telling the story .. to try and explain how well my mother is in her mind; The volunteer said she'd heard of the word .. & it was from "mane" = hand in Latin .. then the vicar mentioned "Emanuel" .. El being God .. & relating it back to hand servant of God.

Hilary, the volunteer visitor, has a dog, Megan, and she will be a great additional visitor for my Mother. It looks like their brains will click and she seemed like a very nice lady, who understands the sick & ill and will understand that sometimes my mother will be asleep and will not be very responsive. I just believe we've had another blessing added into our lives.

Thank you Mr Postman - we are so lucky having volunteer visitors available to help us out, and who can read these letters for us, and give some extra stimulation to our mother ..

Hilary Melton-Butcher
Positive Letters

Wednesday 28 January 2009

She's gone cuckoo? ....

Dear Mr Postman .. are you bringing me one of my own letters - a Hilary's snippet about my own mother .. good! -

It's not comfortable is it? .. "a/an Hilary's snippets" .. (which should it be "a" or "an"?) - still ne'er mind dear readers .. I'm quite sure you'll get the gist of my words .. this postive story is true!! Just before I start .. please tell me if you don't understand my English sayings .. & I'll add them in to my snippets by way of explanation .. if I have to be educated .. so do you!!

My Ma suddenly in mid November 2008 asked me what "Emanuensis" is .. I just opened my eyes wide, laughed & asked her to repeat the word .. I'd never heard of it .. & thought she'd finally gone 'cuckoo' - well she repeated it ... but as I had no hook .. I said I'd look .. but then forgot. 10 days later she asked me again .. I then asked her to spell it (remember she's been bedridden for two years & can't read or effectively do anything for herself) .. out came the spelling as above: this time I thought I'd better do something?? I was still laughing ... in pure amazement ...

I did forget for a few days ..but because I'd written it down - remembered the word .. it's not in my dictionary (spelt that way) .. but on Googling it .. up it came .. I selected the definition that I knew my Ma would relate to .. "Plato was Socrates' Emanuensis" ... so I told my Ma .. & added Emanuensis is a sort of scribe ... my mother immediately retorted "dogsbody" ... in English! = the person who gets all the worst jobs.

Yesterday she used the term again .. so you tell me what's wrong with that brain .. ?? I tell you I am kept very much on my toes .. not much slips by ... I asked her where the word had come from the connection .. Mum answered "Mrs Mills" .. I didn't know who Mrs Mills was .. so off on another track we went!! .. Mrs Mills was the mother of an old friend .. whom Mum had nursed & cared for to her death about 20 years ago in her Residential Care Home, which she had owned!!

Thankyou for bringing me these memories Mr Postman .. perhaps you'll have another tomorrow? ...

Hilary Melton-Butcher
Positive Letters

Hilary's Snippets .....what are glasses?

Dear Mr Postman .. it is good to see .. and this time I have a story to tell you .. perhaps we'll have a letter shortly .. my mother does like seeing you - a ray of hope!

Yesterday when I was up with my Ma .. and was able to give a little of her lemon 'drink' .. at least her throat can get flavour now & she so enjoys it .. thank goodness: though I have to be extremely careful as it could be disastrous going down the wrong way. Three and a half teaspoons isn't much .. but at least it's something?!

Afterwards I asked if she'd like to see some of the postcards from San Diego .. but I needed to get my glasses .. so I bent down & picked up a tall glass vase, we'd had the daffodils and tulips in, to take it across to my bag & coat, so I wouldn't forget it & to collect my glasses. Mum involuntarily burst into a belly full of laughter .. it wasn't the glass she'd been expecting to see .. & she just thought it was very funny .. and so we had a really good laugh together = good for both of us.

We then had the serious time!! of learning a little about San Diego & its origins .. we both like learning & getting to know different subjects - something that's kept me in good stead .. in that I can provide stimulating snippets of information for Mum to keep her amused & interested. The range of subjects is extremely eclectic! Hilary's Snippets will encompass all sorts of detached fragments of information or knowledge ....

Thank you for listening Mr Postman ..

Hilary Melton-Butcher
Positive Letters

Tuesday 27 January 2009

Involvement & communication ... French translation too ..

Dear Mr Postman .. we're so glad you are still delivering letters! This is a sad story .. but shows that continuing contact brings courage and hope from those difficult times ...

Positive letters keep us in touch & continue to provide support .. this is one of those positive stories in times of great sadness ... when my mother was in the Acute Brain Injury Unit .. a young 26 year old French girl was admitted .. & it was really difficult to communicate at the beginning .. as you can understand she was really scared & it showed .. it was too terrible to see.

Her parents came over .. and they couldn't speak English, but by now 'our' youngster was able to write words down & could understand what we were saying .. & could understand our support & 'eyes of encouragement'. I got to know her a little & her parents .. she got a little better and went back to France, sadly by Christmas she had died.

I had written to her for her return & wish her well in her recovery .. & she was going to come over and visit me; then I wrote for Christmas 2007. However I got a letter from her parents letting me know that they had lost their daughter .. I wrote back - my Uncle translating it empathetically into French for me! Great what 87 year olds can do .. to help!!

Again this year .. I just dropped a note to say Mum and I remembered them and often talked of our time together in the Acute Brain Injury Unit - I've just had a card from them .... being so appreciative of my connection .. & how they are so happy to hear from us: their elder daughter has just had another son .. & they were saying that S would have loved her new nephew .. and that though they have diffiulty accepting the loss of their daughter, their new grandson is wonderful news.

I'm sure the connection, ongoing support provides them with some solace .. & I know my Mum appreciates being kept involved .. so my communication helps us all .. including my translating Uncle, who loves being included!!

Thank you Mr Postman .. so you see our letters also go overseas .. we do appreciate your service ..

Hilary Melton-Butcher
Positive Letters

Monday 26 January 2009

Happy days - lemon drink .. the start ..

Today was a big day for my Ma .. I'm not quite sure why it's taken a year .. when you're dying that's quite a long time .. but my Ma is made of 'stern' stuff! Today after over a year .. I was able to give her a thickened lemon drink - granted only half teaspoons .. but how nice for her throat .. to be able to have something to taste & be refreshed with ...

She is such a dear .. but a strong one! .. this pm when I went back she was sleepy, but asked after my uncle & wanted to make sure he was alright. So tomorrow if she's awake sufficiently - I can give her some more of this 'thick 'n easy' flavoured "drink". At least it's something .. heaven help my patience .. nothing was organised, & the Advice sheet was not fully completed, also the specialist had her facts wrong .. I get so frustrated .. why can't people have common sense??!! or for that matter just say 'sorry' .. & take it on board .. it just never happens - people don't think. This is when I have to do a mental turn on my heel & say - stay positive .. count your blessings. I'm counting ....!!

Sunday 25 January 2009

Background to positive letters .. attitude

Mum is still tired today after her mini fit yesterday .. but tomorrow is a big day for her ..she can have something to drink - well a thickened & flavoured mix (this could be dangerous) .. so I suggested she have a good sleep - but once again was concerned about me! .. if she goes to sleep perhaps I can too - bless her. I said that I was over my jet lag finally - it's taken 4 nights to settle back in.

I'd like to enlighten you how I've made my Ma's life interesting for the past 2 years lying in various hospital beds .. & to let you know her attitude to life .. & how she's helped me maintain my positive attitude to all that's going on.

This has had spin offs .. as her cousins, friends, carers etc have all reacted to those positive letters and stories & stimulated my ideas & thus my Ma's mind - which all helps us make each visit interesting ...

Saturday 24 January 2009

Strokes ... and subsequent mini fits ..

Today .. my poor Ma had a mini fit .. an occurrence for people with strokes - it doesn't happen too often, as she's on medication - but I'm pleased I was with her. She doesn't appear to have any pain .. but can feel it - it affects her eyes/ eyelids & the left side of her face; this time she didn't have a flush - so didn't need cold flannels to cool her off.

Once I'd established she was ok, despite her face felt a bit funny, she drifted off to sleep; I came back after a couple of hours & she vaguely came too .. sufficiently to say she was alright - tired but ok. Again I left & returned 2 - 3 hours later.

She was still tired (understandably) .. but we had a brief chat .. & she can still see & communicate (a relief) and asked me about various things - some sensible .. some a bit off the wall - but 'go with flow' ... it makes no difference to me; then I reconfirmed she was ok - but she then shifted to how I was .. had I had enough sleep? was I over my jet lag? don't worry about her fit - she feels ok "it wasn't serious" - the staff will take care of her .. my mother is a tower of strength .. she just wants to get on with life .. not leave it .. a great attribute - don't you think?

Friday 23 January 2009

Healing - fesh flowers ...

Yesterday I took up some fresh tulips & daffodils .. which have brightened up Mum's life - though, Janice's flowers from the garden are still there (our Healer) .. Mum knew their names .. Janice didn't!! White camellias, white heather & purple periwinkle (which to my surprise has lasted) - while the tulips I bought are orangey yellow - two varieties .. plain & the fluffy parrot type: the fluffy ones have more than tulip head .. there are another one or two down the stem - I've never seen that before - have you .. gardeners of the world?!

Mum was delighted & always thanks me .. though she remembers that Janice brought in the others while I was away. One of the Chaplains came to say prayers with my Ma & Alison said we always have such wonderful fresh flowers & it's always a pleasure being in the room ... I think the staff are always popping in when we have scented varieties.

Thursday 22 January 2009

Where was the Doctor's Certificate ..???

On one of my recent visits to my Ma .. she said she'd been bashed on the head & had a pain across the back of her head .. as the doctor was visiting, I thought I'd ask him to visit & check her out. However Mum was also having one of those days (very rare fortunately!) .. my brother described it thus: Ma was in a tizzy, worried that she had been hit on the head, and that worse was likely to happen, and not just to her but to Hilary & me - we were told to be careful!

When it happens - Mum looks out with clear, big eyes .. and is very frustrated that I don't take it seriously ... & start laughing .. she looks at me & says "you must take it seriously, it's very bad" - & as she lies in bed unable to move ... it's very difficult to keep a straight face - poor Ma!!

The Doctor came & checked her head & neck & asked if he could turn her head .. Mum said "'NO' .. I can't see you ... & I don't believe you're a doctor, I need to see your Certificate!! - so come round this side of the bed" (as Mum has left sided neglect - she sees & hears better when we're on her right - that symptom has improved over time). The doctor dutifully! did as he was told!! Then she wanted to see his Certificate! & then said "I don't believe you're a doctor - you're not dressed as one" .. he had on a leather jacket - he did have a tie on .. but not a dark suit jacket!! Jaitema, the Indian nurse, & I were roaring with laughter on the other side of the bed, Ian was trying to keep a straight face - my mother is just amazing!

Connection .. global friends ... Care of Uncle!

New friends .. amazing how quickly one can connect with people around the world with similar interests who are already supporting me - I just love this internet & the ability to share my experiences with people who care, but also who've been through similar challenges & can understand. I'm looking forward to hearing positive stories from everyone .. & sharing ideas -

My uncle, 87, was out when I visited - but I let myself in & sorted out his fridge & stores - so that it was 'fresh' & left the shopping I'd bought. He's always so appreciative and he gets 'interesting' foods .. that he probably wouldn't buy himself, as he's pretty slow at getting around & has macular degeneration .. so it's good to visit as I can keep an eye on the house, and him!

They returned just in time for coffee & so the five of us had coffee & a chat - he loves company, but more importantly I'm back & his security blanket is there in case of need. I dropped in to see my Ma on my way home & she was cheerful and pleased I'd seen Derek.

Wednesday 21 January 2009

Oh! .. so you want to reclaim your position as number one - do you?

It's nice to be back from San Diego .. but the jet lag is still here - perhaps I'll sleep tonight & be up and running tomorrow? I'm so fired up with life, that sleeping is quite tricky .. lots mulling over in the brain & lots of ideas for future plans .. positive letters and stories

My mother was so pleased to see me home .. but practical as ever! .. "oh! .. so you want to reclaim your position as number one - do you??!!" She wanted to know where San Diego is .. what I was doing there .. & then said .. "oh good - if my computer goes wrong you can fix it for me?" ... 'of course I can!'. Her eyes lit up when I said I'd be back tomorrow with some new fresh flowers.

However, how lucky we are - Janice, our Healer, has done so much for Mum while I've been away - she visited every day .. even Sunday .. and just is so caring, helps in so many ways - but I'll tell you that story another day ...

Monday 19 January 2009

Global world - long term friends made in hospital - across the pond, different generations ..

Dear Mr Postman .. this is some more background information on us .. that others may find interesting ..

Isn't it amazing - we can travel the world, connect with friends, keep up with work & enjoy life while we do it. I've been able to chat to a young friend .. and I love being able to communicate .. to keep in touch with G - as she was in the Acute Brain Injury Unit when my mother was there: we made a mini support group for each other .. she was sad to leave us there .. but 18 months on we're still in touch .. and the support is there. She's still improving .. which just shows you what the brain can do for itself and us - each & every one of us .... use your brain & it'll improve.

My mother remembers this young lady and her mother, and the other patients. My Mum's 'brain attack', as her 3 strokes are commonly known .. has not really affected her memory .. with prompting, she will remember; she hasn't really, to date, started repeating things, she's interested in things (not in detail) .. but if I don't know something .. she sends me off to look it up in the dictionary or Google it! She remembers things back in the 1920s .. to the millinenium - I have to be on my toes (with my brain very much connected! when I visit) .. to provide stimulation and interest for her.

I've been inspired by my visit, excited at the prospects for the future and look forward to getting back to see my Ma and build my future .. talk to you all soon ...

Thank you Mr Postman for reading this letter and as you say it is interesting this journey .. we can all learn so much - and thank you for saying that you'll almost certainly learn something from us ..

Hilary Melton-Butcher
Positive Letters

Sunday 18 January 2009

Hilary's take on life .. reason for ...

Dear Mr Postman .. this is so I can give you an idea of where I've been and how these stories and letters have been developed ...

I' m just about to go back to the UK after a short break with some friends in California - brainstorming ideas for our blogs. A number of us have all had difficult times and experienced months or years of serious or terminal illness - with children, spouses, relatives or parents. It is so good to be supported by all these amazing people and to be encouraged to continue with these positive letters and stories.

I'm looking forward to including positive tales from around the world, to bring different approaches to coping with illness - which will, I hope, let a little joy and light in to peoples' burdens, and from my own experience provide snippets of interesting or amusing information which they can share = hilary's take on life!

Thank you Mr Postman .. for listening and being interested .. it's good to know that you understand Hilary's snippets - my approach ...

Hilary Melton-Butcher
Positive Letters

Tuesday 13 January 2009

"Jamming Session" .. in the Acute Brain Injury Unit ..

Dear Mr Postman .. thank you for listening to this to a bit more of this tale ...

My mother was in the Acute Brain Injury Ward for 4 months .. and at one stage two Cameroonian ladies, totally coincidentally, were admitted to our six bed ward .. and at that stage my mother was pretty fragile, as she was not yet stabilised. A radio came out .. & I thought oh no!!! – it’s been so wonderful .. so quiet & peaceful; Jasmine had some African music playing and I just asked her to keep it quiet .. as my mother had never liked modern music of any description ... I thought!!

Well, well – when the daughter disappeared.. my mother apparently had said to the other patients .. well let’s have some of that music .. so they’d had a “jamming session” together & obviously it cheered them all up!! It amazed me. When I heard the tale – all these bed ridden patients waving their bed sheets with whichever body part would move in time to the music & those that could whistle or sing spouting forth – my imagination took hold! I expect you’ve got positive stories to tell too?

Thank you Mr Postman .. I'm glad you liked the jamming session .. it's good to visualise isn't it?

Hilary Melton-Butcher
Positive Letters

Wonderful friends .. American, Bangladeshi, Cameroonians, French ...

Our time in the Acute Brain Injury Unit, 6 bedded, was emotional, fraught with worry and one’s feeling of helplessness while my mother’s trauma was ‘sorted out’. However the staff were amazing – and it would be great if that example could be replicated out to all nursing and caring – a wish!?

We also met some other wonderful patients and their families – all going through probably worse times than us .. as their relations were younger than my mother of then 87. I am still in touch with a few of them – an American girl and her family, and a Bangladeshi family, whose mother had had a stroke. Another young French girl very sadly died later on. We also had two Cameroonian ladies .. so we had an amazing cultural exchange. Guess what my first story, positive letter, is going to be about?! See my next post...

Introduction: the blessings ....Positive Letters and stories ...

First we had that initial month, when my mother was ‘alright’ and was still able to be actively involved (though you’ll see that has not stopped as the months go on .. but that’s the story!) In that month we were able to have an Enduring Power of Attorney drawn up – fortunately our lives are simple – there’s only the three of us + two wives .. one of whom is a lawyer = lucky, and our mother agreed and authorised those decisions.

Blessing number two .. my mother, when the major strokes came, was admitted into the Acute Brain Injury Unit – so she had first class care; perhaps Blessing number one, now 3 .. should have been that Barbara & Tim live in that part of London, could easily visit, & where UCH and the ABIU are situated, with all their contiguous facilities – particularly the level of care.?!

Blessing number 4 – is the fact that the Chaplaincy was excellent and regularly on hand with a sympathetic ear at the ready for the patients and family. Blessing number 5 – is that miraculously despite being bedridden, my mother is able to communicate.

Introduction: the beginning of Positive Letters & stories

Positive Letters with stories – these have proved to be so useful to me and also to our friends and family as I am able to let them know my mother’s mental health and wellbeing after her 3 major strokes in February 2007.

My mother was in London celebrating my brothers’ birthdays when the strokes started to occur; initially we hoped she’d be well enough to go home to Penzance in Cornwall after due rehabilitation.

She first went to University College Hospital, before being transferred for rehabilitation to the National Hospital for Neurology and Neurosurgery in Queen Square (just round the corner from Great Ormond Street Hospital for children) – but in transit she suffered further strokes and ended up in the Acute Brain Injury unit of the NHNN.

We were exceedingly lucky in any number of ways – and looking back I have to count our blessings ... see my next post.