C ARERS

People are all different, even people doing the same job.
Well I already knew this, from the differing personalities that were teachers in my schools.

So why does it  so surprise me that carers can be so different.

I have  a super team of four from Scope. But they are all so different and have such differing interests and skills. I get on with them all in different ways. They are all kind, all try to get basic tasks like managing the hoist correct and all , I feel, have my best interests at heart.

One of them has young children,and is most definitely someone who enjoys house work. eg She loves ironing and does it beautifully.

The second is very shy and lacks some confidence. It is so clear that she wants to be perfect in all she does. She takes her time to be just right and asks frequently to check that things are done as I would wish.

Number three is more of a clown. ...  BUT...She uses her common sense and is so funny. She is a speedy worker and even managed to clean all the windows in record time... she loves music eg Radio 2 and sings along.

Number four, today's carer,, has done the same art course as me , but she went on to complete to degree level. We have lots of art-related things to talk about and she doesn't mind doing mucky jobs like cleaning my brushes. This so helps, as it takes me an afternoon and I end up wet and making the bathroom filthy ( I can't reach the sink).

So differing personalities all adding value to my care.

I was so worried, when dear Laura left, as to whom would replace her, but this team seem great AND I still see Laura every Wednesday... so care wise.. fingers crossed... I feel Ive got it made.

HUG ME, I'VE GOT MND

CONTINUING CARE ASSESSMENT

For some time now the NHS has picked up the cost of my night carers.. ie 60% of the care package budget.
At the review,a few weeks ago, the NHS agreed to pay 80% 0f the total cost and also agreed that another assessment would take place very soon. Indeed it was soon, 10days later.

At a previous review I sat with my Social Worker, a member of Scope staff and a man do with funding. I was very annoyed with the man as he came in and sat behind me... I eventually moved. But how rude to sit behind someone in a wheel chair.. well to sit behind anyone actually, ..........well except perhaps at the pictures !
At that meeting 2 out of 3 people wanted me to sign a  care plan off, which basically meant that I would get 1/2 hr extra time !! No B....... Way !!!

It was difficult for me, three against one so I determined that at any future meeting I would have some support.

Thus it was that my lounge was rearranged to make space for at least 7 people ! I was expecting the NHS person, the social worker, physio ( at my my request) , my friend John and my carer !

It couldn't have been a different meeting. All the people were very supportive as we filled in the long document. It did get to one point about communication... I communicate well... but felt the need to explain to the NHS woman that though I appear bright and articulate inside, I'm actually very frightened. Being a good communicator doesn't mean that you are glossing over feelings but I thought they may feel that I was just fine !Anyway at this point I broke down. My breathing and voice came out in gasps. The group showed nothing but kindness and support.

Then I composed myself, and eventually we got to the section on mental health... I said I had depression ... yes said NHS woman, you are bound to be depressed with this diagnosis... No, said I, I have a long term diagnosis... she was surprised and that got me another high level of need. In the end there were 5 high levels and though she has to take the info to the panel next week she said it would all be fine. I would have 100% NHS funding. In fact it means now I don't have to jump through hoops !
At an instant she increased my daily care by 1 1/2 hrs per day.

I feel this went well... but if only I had known I wouldn't have had to re-mortgage my house by so much.... but what the hell !! it now means that I can have any treats I wish and not worry about money.

I wonder how many of us with MND have continuous care... was it an ordeal for you? Was it difficult to get?

I feared the whole process, because every other step of the way has been so difficult and every step taken so long to get resolution............. But this was easy, and also means that I am now getting the care I need..... Unless the govt steps in !!!!!! Fingers crossed !!!

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

BED-TIME AND NIGHT CARERS

When I moved into Misty Morn, I chose to place my bed on the far side of the room so that I could see Stoodley Pike from the window. What I forgot was that I was in a bungalow and the curtains would therefore be drawn when I was in bed !!

A few days passed, and I realised I needed to be able to plug in wheelchair from the bed , in order to charge it. I could not get to plug a meter away. The only place for a wall plug was on the opposite wall, thus my bed moved from one side of the room to the other !

Time has passed, I now need a carer to put me into bed. The carer now puts the chair on charge.

I had a brief (very brief) dalliance with a hospital bed. I found it so soft and so narrow that I felt I was drowning in it. It was so narrow that I couldn't move. I need width to spread my arms and use them to pull myself a little bit .To take that small amount of movement away was both inappropriate and cruel.

the narrow bed was taken away, PDQ!

I went back to my normal bed and a Profiling mattress, (to try to prevent pressure sores) , was placed on top of it. It was then very high and it was only with difficulty that I could get on it, and that was with a hoist.

So yesterday, a new Profiling (hospital) bed was delivered. It is 4' wide and actually doesn't look bad at all. It has a sort of Pine finish, and melds well with my bedroom furniture. It goes up/ down, sits you up, raises your legs, head up feet down, head down, feet up....... all at the touch of a button !!

It is easy to lower sufficiently for the hoist to be used, and thus is very safe.

Each night a carer arrives at 10:00. They help me undress,  sometimes  shower ,  and get ready for bed. They wipe my feet and then massage my feet and legs, to aid circulation. (By night time my feet and legs are  quite swollen and  feel like they are burning. The massage certainly helps). The carer often has more intimate things to do too.

When I am in bed, a night bag has to be attached to the normal catheter bag and positioned on the side I am facing.

After 3hrs 30 mins sleep, the carer has to wake me and turn me over. I don't move myself at all when asleep, and if left to would wake in pain from the pressure which builds up in one place, my thighs in particular. This involves moving my legs and supporting my shoulders to move, also moving the night bag stand from one side to the other, without pulling... a delicate operation.

My temperature seems to fluctuate during the night and I can wake cold , or conversely hot. Each time I have to call on my carer to add blankets or remove. If I move my head the pillows may move and I cant get comfy again until the carer  sorts them out. I need a spray if my mouth gets dry, which it does as I don,t produce sufficient saliva, I may need a drink of water........ the list goes on. The carer may well be in my room every hour or so throughout the night.

The agency that provides these people has just rung. It seems that I might be a little too picky about whom I will have doing my night sits. !!!!!!

I don't feel I'm picky. After all who would want someone who sings with the TV all night, someone who doesn't wash their hands and hands you a glass with their hands right over the top, who says, are you OK? as they waltz out of the room, who telephones friends throughout the night and doesn't answer your calls, who pulls your legs roughly onto the bed, who places the night bag just too far a way that the tube pulls and gives you pain.... and soooooooo much more.

Consequently, they are finding difficulty finding appropriate carers .
I see this, not as my fault, but a fault of their recruitment policy and  majorly a fault of their low pay, barely above minimum wage for antisocial hours work.

But do I accept a lower level of service?
No, I cant !
I won't !!

And why should I?
Why should I?

It's my life, whats left of it, and I should, at a minimum, be able to sleep safely and comfortably.

So tonight , I have a carer from league two, because the league one players are unavailable through other work, family commitments or other valid personal reasons. Simply its the case that they don't employ sufficient carers to cover such eventualities.

And who is it at the end of the line?

Those of us being cared for!

I have my voice to indicate my needs, but what happens when I can't?
I am filled with fear.
So, so , frightened about this aspect of the future. I may have league two people caring for me and be unable to express this sufficiently.
It is a simply terrifying aspect of the future, never mind all the other MND aspects of swallowing and breathing.

PS. For those of you that don't know how MND works, Nikki's Simple Guide:  Motor nerves, (the ones that make muscles work), stop working, but Sensory nerves aren't , thus you have feeling.
So if I was hit on the toe with hammer I couldn't move it out of the way but it certainly would hurt !!

HUG ME , I'VE GOT MND

HERE I AM !

Recently a number of people have contacted me, to see how I am. They have been worried, as I haven't Blogged, Face-booked or Tweeted for over a week!

I am somewhat humbled by your concerns, thankyou so very much.

So why haven't I been Blogging ? 

Well I have been unwell , a third UTI in four weeks, and boy does this bring you down!! Had I written, all the content, would have been to do with, yet again , toilets and bottoms !! And this would be far too much information! I've kept quiet and stored up a few gems for when I did start to write again...... and here they are !

Well Margaret Thatcher died. I had missed the news that day, but  was alerted to her death by a,  funny or tasteless (depends on your point of view), joke sent to me. Through this. I realised she must have died , then  looked on the news channel to check.

Because:  This isn't the first time I had thought she had died.
You see,   I was at Glastonbury on the day Michael Jackson died. It was a Thursday if I remember rightly. I had travelled there alone, and was tired after the drive As it was raining, I decided to take refuge in my sleeping bag and have a nap. I was awakened from a deep sleep by lots of chatter going from tent to tent. In my sleepy state, I heard the Margaret Thatcher had died....... but no I had mis-heard ! , it was Michael Jackson........  I thought my hearing was spot on.. Not that day !!!

I am having more carers now. All of the people are kindly and mean well, but sometimes just don't quite get it !

These two stories are to do with Onions!!

First: I was to have a potato and bacon dish for dinner and asked a carer to make a small side salad to go with it. I  would  bake it later. (Well I simply can't attune myself to eating at 5:30 ish each evening. ) So I said that  there were two tomatoes, a shallot and an orange (orange acidulates the onion and makes it taste yummy).
Off I went to the bathroom.
On my return I saw my salad: One tomato( not two), half an orange (why?) , and one whole large onion!! (Don't think she knew what a shallot was !! ) So as not to offend her, I said thankyou, chucked away most of the onion when she left ,and found the second tomato.
Looking back I cant imagine that I kept a straight face when I viewed that whole plate of chopped onion!!

Second: a rather more serious error to do with onions. As I said before , I frequently ask carers to do prep , to enable me to cook my evening meal. (I find chopping very difficult). So I planned to make a tomato sauce with mushrooms to use with pasta. I put out two onions and a few cloves of garlic and asked for these to be chopped.
Meanwhile I went to the bathroom.When  I needed help to get up,  in came the two carers . The person chopping the onions came in with her gloves on. Do change them, I said or, I will end up smelling of onions .
She oblidged.
Then helped me.
Then, back to the kitchen..
And I knew, I just knew....... "Have you changed your gloves? ", I said.
No, was the response.
Please do, said I .
She did, but obviously didn't understand my request.  I took the opportunity to gently explain that bathroom tasks and kitchen tasks are different and changing gloves is like washing your hands after leaving the toilet to do anything else. I beliieve she felt she was protecting herself fine , forgetting that gloves have a two way  purpose!
Later she did query my request ,but was assured that I was correct !

Once again , whilst these tales  may be funny and occasionally worrying, what really concerns me is the time when I may not be able to communicate my needs and comments quickly. 
I have noticed people do rush into tasks, without awaiting full instruction, and perhaps I do make them impatient as sometimes I cough between words or simply take a breath......  I have to trust, that, by the time that comes I will have a team of carers  who know me well and can be reliably trusted to do things correctly.

A step closer to Glastonbury.
This week I did manage to source a Profiling bed , which I can hire for a week and take to Glasto !

On Tuesday ,I am to have Double Profiling bed delivered . These are apparently reserved for bariatric patients . I am being allowed one, as I get so stressed in a single, feeling so enclosed , like being in a tomb. 

I had a need to , yet again, move beds around, getting rid of one of my doubles. But until the person who wants, it can collect, it needed to be moved to the garage to make way for the new bed.
Who to do it?
My friends have done it once.
Then it was moved back in by removal men.
Now there is an urgency to get it out again!
One of the support workers offered that her son would help. He would turn up in an hours time.
He did. Bed moved !!
How kind, I hadn't even met him before.

And another lovely happening today. A surprise visit from a friend, bringing smoked salmon, cheeses and lots of goodies for lunch, and we had a couple of glasses of champagne too !

Not a bad way to end this Blog? I hope you agree. 

HUG ME, I'VE GOT MND 

LAST NIGHT I FLEW TO CAIRO

Last Night I Flew to Cairo ......well , in my imagination ! You see ,the hospital bed is so difficult to turn in, so difficult to sit up in ( even with the leg break), that I decided to sleep in the Rise and Recline chair.
And..... when you are seated like that you generally are  on an airplane . I knew I would be in it (Chair) for 7 hrs, and I recall Egypt is about that distance away...well.. ish...   AND..... as Cairo is my favourite city it seemed the obvious place to go.
Unfortunately, I didn't have time to walk round the Pyramids or to go to the Museum .. as at 5:15,  ( after 2 X2 hr sleep slots),  I woke with a serving of tea from my flight attendant... no sorry, carer!
 By 5:30 the inevitable trip to the bathroom was necessary. I decided I would try the proper bed for a few hours , until Marianne , the breakfast carer arrived.
I got onto the bed and with help was positioned in, in  an upright position. But then the panic came as I couldnt breathe, and couldn't move sufficiently to give my chest the expansion it need to access the air.
The carer calmed me and quickly helped me into my wheelchair.
 It was by then  5:50.. and there I have been since .. You see it's so difficult to get on the Rise and Recline chair without support...  and getting into the chair was never a priority when people came... bathroom always was , as getting off the loo is somtimes impossible.... hope when Im better I will once again self manage...

Anyway , today's visits :
Marianne came, and made breakfast.
Man came to write care plan .
Laura was supposed to come but got caught up on business ( and silly me, I missed her txt).
Julia popped in and so did Ginny... I had a coughing fit so they had a chat..
Tea time carer came, leaned on the fridge door, and now it barely closes.

With so many people coming into the kitchen I am going to have to put advice notices up as the potential damage through   lack of sensitivity as to how things may or may not work (Ie people expect things to work as they think.....and don't make the allowance ,that things may not conform !!!).. The kitchen will end up like a Youth Hostel Kitchen... This all sounds trivial, but it is driving mad having to over-see so many people and there apparent lack of attention. They do mean well, but their priorities are not necessarily mine. Anyway,,,,,,, I did have some calories in the form of cool soup with coldish tomatoes on toast !

Karen was to have visited, but there was an accident in Tod and the roads were closed, hence the carer cooking... Im sure she will visit soon.

And very soon carer for the night .. another new person will arrive.

Its stressful having these numbers of different carers through the door.. and I appreciate that this plan has been put together quickly.... and when I think about it the stress of settling in so many people is less than the stress of not having them.

HUG ME , I'VE GOT MND 

SIZE DOES MATTER !

So my last Blog was about the situation I was in re getting off the toilet.... and carers..

You will be pleased, I hope, as I am, to find that I am NOT in a Care Home ! But it was a battle !
If I'm repeating here please accept my apologies.... The last week has left me exhausted,  I have been very emotional..... thus haven't updated the Blog for a few days.

SO .........  SIZE DOES MATTER !!   I knew, when they were described to me, that the spacers would be simple tubes, about 1" high... I also knew that an extra inch of height on the toilet would enable me to get off by myself..... well, for a while ... until a care plan and other issues were on the way to being solved.
It realise that if I have a full time carer, I will be be able to have help with the toilet at any point of the day. Either with a helping hand to support me or, in a while, an inevitable hoist.
BUT......... I do not want 24 hour care. The thought of someone in my home all the time horrifies me, I need space . (Mind you the thought of a Care home horrifies me more!!)

To give the Matron  credit , she did talk to the GP immediately after leaving me on Wednesday. The GP  did an urgent referral to a Urologist and I have an appointment for mid March .
The Matron did ask if I thought it might be an idea to find information on catheters , did I Google.......... !!!!!!!!

AS IF I WOULDN'T .........

The care team did Thur and Fri morning... and from today, will be in  morning and evening... but I have no idea for what time this visit is planned. (Ho Hum !!!!)
NB. .......... on Friday I did send a message via carer for the manager of the service to contact me... I have no contact number.... but she didn't..( I guess beggars cant be choosers... !!!!!!!)  BUT by listening to me, they will save money as there are certain times I don't want the carers !

You can only do so much....When will some of these people realise Im not thick !!!!

This certainly doesn't apply to all the teams.The  usual team of Michaela and Bethan are brilliant , and have been since I first met them over a year ago. I am treated with respect, understanding . My thoughts , views ideas are taken as important.

This is a mix up of thoughts and events I know...

But back to the Spacers. Prism are the company who supply and fit. Estimated delivery 3 to 5 days.
Imagine my delight, when I got a call on Thursday , from Katy at Prism, to say that the engineer would arrive to fit them on Friday morning, at 8:00........ OH dear, early start ..........., but I knew it was in my interest to getup .

AH ! Katy said ,The engineer doesn't have the part. I'll get the couriered over night.
AH! Katy said,  That's no good he needs them early. I'll get them couriered overnight, with arrival before 9:00.

AH Katy, I said, You are a star !!
Prism certainly pulled out all the stops. What service .

So Fri morn, I was up at 7:30 and Fed EX arrived just after. Engineer arrived and didnt bat an eyelid when I said I needed to take a picture.
Here it is ...........

The little silver bit is all that was necessary..OK a short term measure, but had it be ordered when I asked ( a month ago), I would have be saved all the anxiety, all the upset, all the worry... AND the indignity of using a commode for 3 days. (This latter bit, not at all nice........ but I'm not going into detail !)

What a week. I do hope I get some peace next week but Monday is not going to be, for certain.. My diary reads thus:
8...                Carer, making breakfast
9.....             Splash , showering me
10....             Laura arrives
10:30............Michelle re direct payment planning
Plus at some point the District Nurse will come to take blood .. ( another story re liver function...)


HUG ME , I'VE GOT MND