I NEED MORE / BETTER CARE

First a notice:

My laptop is poorly so I wont Blog again till its better!! Its off to laptop Drs tomorrow !

Now the Blog:

 The following is an extract from the  email that I sent to my social worker last night  . I thought it appropriate that you too have a copy..

 

Hi ,

Hope you had good weekend.

Mine was mixed.

I went to Samaritan gathering on Sat afternoon, I had a wonderful time , being “normal”.  Calderdale Vol transport providing mini bus. ( Very good care and service. ) (There are no taxis in Hebden Bridge which take wheel chair passengers )

I have,  reluctantly, decided to get rid of car as the morphine makes me somewhat slower to react, I lacking confidence as I feel I could be a danger to others and myself. This is very sad as I have been a driver since 17.

 

On Saturday night, my night sitter did not turn up. I needed the bathroom at 9 so called on my nearest available  friend, from Tod. She had to ask another person to give her a lift.

 

Thus , having gone to the bathroom, when carer didn't arrive promptly, I didn't worry. (J,has been late before)            When it got to 10:30 I began to worry. I decided to wait till 11:15..... (perhaps a mistake on my behalf )... 11:15 is when last bus arrives. 

No carer by then, so I decided to sleep in wheel chair.

Had I rung the agency at that point, they may well have got someone.... but whom... ??

At the very least it would be 12:30 by the time someone got here, and then I would need to explain how to treat me ( care plan not up to date), and I would get little sleep and would have been anxious and maybe in pain. (ie If I am not moved correctly ,.  NB I am unable to move myself ,  I am in considerable pain, which the morphine helps to eliminate, but not completely)

 

So I slept in wheel chair. Its now 9:25.pm . I have been here since 9:30 am  yesterday. 36hrs!!!!   I am shattered and my bottom is sore.

 

The SIT team were wonderful this morning and treated me so kindly. They put me in rise and recline chair to eat breakfast, and stayed to do lunch toilet visit. Thus, I did have 1 hr out of w.chair. I have great respect for the SIT team. They may make the odd mistake, but they always do their best, treat me with respect ,courtesy and kindness.And always turn up.)

 

 

I believe I need more care.

 

Please do take this to the panel on Wednesday. Thankyou.

 Yours sincerely ,     Nikki    (Woodman)

 

PS  I spoke to care agency this morning. They apologised. I expressed my view that I realised that J (planned carer ),should have contacted them should she be unable to arrive promptly, However should she or her family be unwell or in an accident I would not wish her penalised. However if this was not the case then she should be dealt with sternly.

 

PPS   Care Agency, have accused me of being too “particular” .My response was that I need a night carer who is suitably skilled, and with whom I would not be afraid. At the moment they have few  I believe this is a recruitment issue for ADVANTAGE, and not an issue of my being “particular”

Now to lighten the mood:

HUG ME, I'VE GOT MND 

 

MANY LOSSES

In the last few days and I have been too exhausted to write, sorry!

 For example, yesterday I had a total of 16 people through my door. Today,( a quiet day !!!!!), a mere 10 !!! 

So, I’m sure you understand my silence once again..

So.... the losses......

I had a phone call from a guy I haven’t actually ever met. His name is Roger. Roger is the brother of my friend Nicki. Nicki, I met in hospital at Sheffield. We shared award for 4 days. Nicki was my clone, in many ways . A teacher, same name, similar age... but Nicki had Bulbar MND. It meant that she could walk when I couldn’t,......... but couldn’t talk or swallow, when I could.

Together we made a perfect Nicola.

Though I didn’t know Nicki for long, it was our synchronicity that made us close. In truth I didn’t have too much contact, but I will never forget her.

So as you get to the end of these paragraphs, you will realise that Nicki has died, and that is why her brother, Roger rang.    

I am so sad and offer my deepest sympathies to Roger, and all the friends and family, of dear Nicki.

Today I had another sad letter, telling me of another death. The man who died was called Ken. He was nearly 90 and died of old age, not MND.

Ken was, sort of, a last link with my parents. Ken and Kay (his late wife) were best friends with mum and dad and used to meet up most Friday nights at The Speech House, Royal Forest of Dean. Dad and Ken both head teachers, Mum and Kay both teachers.

I send my deepest sympathies to the three children and, of course my love.

I have many funny happy memories of the Friday nights... especially when too much Whiskey was imbibed!!!

My other losses are to do with my MND.

I can no longer click my fingers on my left hand; I can’t easily lift a full cup of coffee.

And lastly, I made the phone call today to have my car taken back.

This too is a very sad loss. I have been a driver since I was 17.

So much sadness.

HUG ME, I’VE GOT MND

FEED-BACK

At last I have found the time to complete the feed back re my visit to the Hospital in Huddersfield.
 On a postcard, I could simply have ticked a box but then was given only a centimetre space in which to write any comments.
 I tried , several times, to complete the form on line. Eventually I contacted the survey agency and they sent me a correct link.

Until I had sent this survey in I felt it inappropriate to write about it. However as it is now winging its way through the ether I will share . I was asked forstly if a friend or relative were to go in to the hospital, would I rcommend it.



If the friend or relative was in good health I would probably be ambivalent re recommendation.

BUT as I have MND, and for anyone else who is unable to weight bare there are issues.

I need turning and nurses were surprised at this.

I asked for socks to be removed 6 times as I have a neuropathy, I was told, “just a minute". They never did remove socks.

When getting me into bed I needed a pillow, as when I lay flat, I have shortness of breath. Just a minute was a response!

I felt my specific needs were not understood or when they were explained were ignored, making me feel very frightened and fearful for my safety.

Whilst there was considerable fuss re covering my private parts there was rank inconsideration when I needed the commode. The hoist was used, after it was serviced! Then, when it was brought down it had dust on it. I was placed in the harness and placed on the commode without the harness being removed. I looked like a puppet. And how do I know this? Well, because I was placed in front of a mirror. I had no choice but to look at myself! This was an undignified thing to do to anyone and made me, once again, feel disregarded as a person.

A man came in and fastidiously cleaned the window ledge with a damp wipe. Others came in and wiped other bits. However no-one seemed to get into the corners of the room. The corner appeared to be dusty and cobwebby, though these may have been scratches in the paint-work.

The kindest people were the Consultant, his registrar, and the anaesthetist and the water jug lady who filled two glasses for me. (I had been asking for two glasses as I needed to drink and can't lift a jug, much less pour from it!)

I had ordered my medication into two bags. Those for night and those for morning. I also had one medication (an MAOI, about which no-one knew, and didn’t appear to find out).This requires refrigeration. EVENTUALLY it was put in a fridge. Much fuss was made re meds and having to list them. One bag was taken. I pointed out there were two. I was told all would be well. Sometime later someone returned and in a curt voice said there should be more meds than this! (Speechless!) The list was made and a copy given to me. It didn’t include the MAOI. So, I guess, my GP will think I don’t take them anymore!!(It's Ok, I'll tell her and show her this feedback, should the need arise.

So, all in all, I am not happy with my care at Huddersfield. I am however delighted that I suffered the lack of care to get the end result of the procedure.

I know that I will have to return to have my catheter changed in 3months. I am not looking forward to this.

So enough serious stuff... another Doctor !

HUG ME, I'VE GOT MND

I'VE COME TO FIND IT HELPFUL........

I've always found it helpful to write things down.
This action took a while to come to.

When I was younger, in my 20's.. I was hopeless at helping myself if I got in a state, and would rant or slam doors or bite my nails harder or shout or cry or............. !!!!!   .... well generally use a lot of energy and get absolutely nowhere!

I guess I have a volatile personality. I excused myself on the grounds that I was "artistic"... Actually, I now realise this was simply bullshit. I was allowing myself to behave in a puerile manner... and as a young adult this wasn't reasonable.

I guess it came with responsibilities of being a parent, that I realised I needed to be calmer, more in control...

I took to writing letters to address issues or to inform people of my arguments against the irritations I found. (I used to almost get tongue tied when angry.. You know, when you think back and say to yourself .... "I should have said this....... or that"   and then you get even more infuriated.

So I wrote these letters and then read and re-read them. Then, I would either tear them up into the tiniest pieces(like confetti) , or sometimes I would burn them. I found this a way of eliminating and calming my angst and any general rage.

Why do I have, did I have rage ? I guess it was a little to do with the nature nurture thing. Some part of it genes, and some to upbringing. Dad was very artistic and also very volatile. He would let rip like a firecracker. He often started a rant with "God bless my heart and soul....rant... rant...rant !!!! He never did learn to control his anger, he always let rip. And, it seemed to me, often Mum or I would be the butt of it.

Dad had issues re depression, was prescribed medication, but would never take it consistently, thus it never worked. I also remember once when had an appointment with a psychiatrist and it turned out that the Dr was younger than him, and more-over that the Dr was a WOMAN !!!!! Well he never did go back !

I too have a diagnosis of depression.. BUT I take my medication and I attend appointments. The services have improved over the years, I'm sure. I  find CBT beneficial. AND since being on a brilliant medication , for the last 8yrs, I am saved. My only difficult times now are when I am over-tired. But even then I do try to control any desire to rage.

Generally I found in my 40's and 50's, and indeed up untill 2yrs ago, I would write down issues. I have endless notebooks ! Through these years I also found simply writing lists... two columns   Positives / Negatives.... helped.

And now I have MND.
Something horrid and a real thing to rage against. But strangely , I don't. I simply accept that I have this horrid disease.
I am actually probably more calm than ever before in my life. This doesn't mean that I want to have MND, it doesn't mean I want to die earlier than I thought I would, it doesn't mean I don't fear death, it doesn't mean I am sad that I wouldnt see any more grandchildren born, it doesn't mean that I'm devastated at the thought of leaving my children and the effects that my death will have on them........

I do write still.  Here it is.
I have found so much solace in writing this Blog.
I have many readers ,85-100 per day. Some contact me directly, some on the blog, and many many people Tweet me...@1949NW .
The comments I receive are amazing. I seem to have a whole new set of friends/family. I gain such encouragement from these comments and I am becoming proud of this Blog, because so many people have said that I have encouraged them to fight and given them inspiration.

And yes I do fight,  By being calm about MND doesn't mean I don't fight. I am a single woman living alone and actually every day is a fight to manage my life.
 Most days I win, some days not.
I find accepting MND is not too hard ( its a fact, I have it !) .\
BUT it's the side effects eg..... having a sore bum from being in an uncomfortable wheel chair all day,...... having to have someone else  dry my intimate parts, because I cant hold a towel strongly,.... all this is hard to live with  .
I control this , not y raging, but by speaking out firmly but politely and also by writing.

I also escape the MND horrors by painting ( when I can ).

Having time to enjoy life ,while I can ,and not be regimented by caers visits, health visits etc........ is difficult.
I fear painting time is SO diminished.
If I had carers all of whom I could trust,  all would be so much improved.
 I don't have consistency, except from two of the night sitters , Laura and a few of the day care staff. The others I have to watch  or instruct, time and time again !

I sometimes wonder if it is I who is fussy, but actually I don't think so. I expect trained people to be handling my body.... I don't have to make best friends of them ( nicer if I do), but just the simple skills should be in place... so for example, my catheter tube wont be pulled, my leg garter isn't twisted, my clothes are smoothed, I'm not left hanging from the hoist too long whilst clothes are sorted...( even though I go through with them each morning !).

So ,you will see, if you have read to this bitter end. Writing does help me. Its one of the reasons I Blog. Its also a diary for my family to look back on in years to come....... I wonder if they will ?

I will ask Liza this evening. She is visiting with my grandchildren  for the weekend... I'm so looking forward to seeing them all. ( So don't expect a Blog tomorrow, I'll be playing or resting !!!!!)


HUG ME, I'VE GOT MND

FIRE !!!!

I've been having truly terrible problems with my feet.
Most of the day they are cold... this seems to happen lots when people have MND.

BUT ,especially in the night, they go hot... I mean HOT....excruciatingly HOT..... Like they are on FIRE! 
It starts with a prickle under my foot. Within minutes it becomes so very hot and the prickle becomes the blade of a hot knife.
The only way of cooling them is with wet flannels , opening a window and completely uncovering my legs to the knee.
It can take 30mins to reduce the temperature. In fact the night before last I had my night sitter cooling my feet 9 times. I was in agony.

So all the thoughts of fiery feet made me remember The Crazy World of Arthur Brown, and the track Fire.

This in turn reminded me of something that happened during Rag Week , when I was in the second year at college in Leicester.

My boyfriend ,John, was on the organising committee.He was at Leicester Uni and I was at college, we had known each other at school since the age of 11.

Crazy World were booked for the Ball.

At the end of his performance the committee took his head-dress and held it for a ransom.
I remember, he paid £5 to get it back. We all thought this was a small fortune , and how clever we were !!!

Bizarre...... what happens when you are young  !!!

HUG ME, I'VE GOT MND

EEEEEEK ! A MOUSE ? IN MY HOUSE ?????

Today Laura came , as she always does on a Wednesday, to do the cleaning and all the other bits of caring that she always does.

Today is, "Put out the re-cycling "  Day. She moved the bags out prior to emptying and prior to mopping floor.

Then she spotted it/them ! Mouse droppings !!!!

Now, I used to catch the mice that Meggie brought in, they were always alive ...... grrrrrrh !!! But I caught them by chasing around with the colander,trapping them (eventually), and taking them up to the field above the house.

Well, I say this is what I did... I did, except for once ,when she managed to bring in two on one rainy night. The first was dispatched into the field but the second, when I had caught it, was thrown through the kitchen window, quite a drop onto the pavement !!! Sorry mouse.... but I wasn't going to get wet again.

What I hadn't realised was that someone was walking up the pavement and the mouse dropped very close to him !! OOOps !!!

So when I say I did this once , I mean, I did only do it the once !!

Anyway back to the kitchen clean today. Laura reckons there were mouse droppings.. Me, I prefer to think it was a stray coffee ground or dried herb.

Much better for me to think this than have to formulate the action plan for catching a mouse with the colander from a wheel-chair !

My Beloved MEGGIE.. the Mouse Catcher

Re name... IT'S RAINING MICE   !!!

HUG ME, I'VE GOT MND 

SOME PEOPLE JUST HAVE......... THE TOUCH !

It has been interesting for me to note how carers work.  Well, not only interesting as an intellectual exercise, but indeed,  necessary for my comfort and, yes, safety.
I have met many carers some with degrees, some without, some without every having completed GCSE's...... and it doesn't seem to matter!!Because they can still be simply divided into two categories... those with the touch and those who lack it !

 All of them have been kindly and wishing to care,BUT  when it comes to my comfort  and general understanding, some just don't cut the mustard.

Thus, it amazes me, that some just have that touch. Why not all?? I have no idea. They do their best but perhaps its a lack of empathy ??

 Is there an empathy gene? Or is it down to nurture???

One example. Today my youngest daughter Chrissie has had , for the first time, to use the standing hoist and help me to the toilet.

Now, for anyone it must be difficult to realise that your mum can't get to the loo unaided. AND then to have to pull down clothing... not easy.

Chrissie was magnificent . With only one quick set instructions she got the handling aspects of the hoist and successfully , kindly   AND , for me most importantly, was able to help me with dignity and an assured calm. eg, without telling, she saw the need to smooth my clothing, to lift my legs ... without prompt. She has the  Touch !

Next weekend Liza will be here. I feel she too will be as capable and caring . She hasn't hoisted before, but she has dealt with me with pneumonia and was splendid .

Thankyou girls. I love you both so very much. I am gratified , proud and delighted that I have such lovely daughters.......

AND   That you have THE TOUCH !!

HUG ME , I'VE GOT MND