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 

IT STARTED WITH A LAUGH !

So... Its morning..... 8:20 ish, about the time that my carers come to wake me, shower and dress me.




I had had a visit from the diabetic nurse yesterday who said that my blood sugar average was very low.. 3.2 apparently , so I will be feeling tired . ( Yes I always do!!), and therefore my med would be reduced.

I was actually pleased at this, as I had been warned that med amount only increases in strength and that I would end up injecting....

But, on the other hand, I wasn't too surprised. My diet has changed considerably in the last year. I eat smaller meals , I drink little wine, and I v v rarely have anything sweet. I'd like to say this was me being disciplined, but no, it's not that! Its just that my taste has changed.

As I felt very hungry when I woke,( as I do now a days,) I requested a cup of tea and a biscuit. On medical grounds of course !!!!!!


The nurse also said that my dose of Thyroxine had to be increased... thus I would be feeling tired ! ( Yes I always do!!).


So there are two additional reasons for my almost permanent exhaustion !(Ie apart from MND!!)


So I sat up in bed and organised the carers to get my clothes out. My friend Janice, was coming for the afternoon, my friend Elsa, bringing dinner tonight, and my daughter arrives late this evening ... I thought I would wear nice clothes.


So here I sit , sipping tea (right now... but glass of wine waiting !!) looking quite respectable... Brightly coloured Gypsy skirt ( hides tubing !!) and black jumper..... mind you, the purple fluffy slippers don't add to the smart image !!

( I need some shoes, Wide fit, plus depth..... and I don't want granny shoes , thank you !!! Does anyone know where I can get such items?? width isn't a problem, its the depth ( swollen feet))


So.... All this being organised ,and I still hadn't finished cup of tea, chatter followed.. (and this is the tag line you are waiting for !!!!!)


"I see Yousef did well."

"Oh, we didn't vote here," says I . (Thinking Yousef must be a well known person in my carers area, who had won the election. )

"Neither did we"...

Mystified I said..."Well who is Yousef?"

"You know, .. them... Yousef "

Ahhh,,,,,,,, the light dawned...... "UKIP, You mean."

"Yes ,Yousef"


Mrs Malaprop rides again !!!


So to end this with a laugh here are some Malapropisms that I have copied from the web:


"Your ambition - is that right - is to abseil across the English channel?"
Cilla Black

"It is beyond my apprehension."
Danny Ozark, baseball team manager

"Listen to the blabbing brook."
Norm Crosby

"This is unparalyzed in the state's history."
Gib Lewis, Texas Speaker of the House

"Marie Scott... has really plummeted to the top."
Alan Weeks

"Unless somebody can pull a miracle out of the fire, Somerset are cruising into the semi-final."
Fred Trueman


"The police are not here to create disorder, they're here to preserve disorder."
Richard Daley, former Chicago mayor

"Republicans understand the importance of bondage between a mother and child."
Dan Quayle, Vice President

"Well, that was a cliff-dweller."
Wes Westrum, about a close baseball game

"If Gower had stopped that [cricket ball] he would have decapitated his hand."
Farokh Engineer


And ... as for George Bush....




"The law I sign today directs new funds... to the task of collecting vital intelligence... on weapons of mass production."

"It will take time to restore chaos and order."

"They have miscalculated me as a leader."

"I am mindful not only of preserving executive powers for myself, but for predecessors as well."

"We need an energy bill that encourages consumption."






Hope you laughed too !!!


AND , if you wish to see video of The Rivals , in which Mrs Malaprop appears, do select this link www.youtube.com/watch?v=BSNm02TS518






HUG ME, I'VE GOT MND

I'M BACK !!

After the most difficult week I'm back !

I went to see Prof Shaw in Sheffield last Wednesday  All went well, but glad I remembered to take snacks as It was a very long day. All went as ever , just the check on my progress... do you call it that when its a decline ?? But those of you with MND will understand .

Thursday and my dear friend Chris came for the day. She was laden with goodies for lunch, plus  beautiful flowers. Chris and I were at college in Leicester together . We aslo had children at Mill Rd in Cambridge at similar times. We had sooo much to talk about . It was a splendid day.

On Friday I got ready for the baptism of my grandson Oli, and also for my hospital stay. Dear Laura buzzed about ironing, packing clothes, packing presents... and as ever looking after me so well,

Saturday morning came. The mini bus from Calderdale Volunteer transport arrived as did my mates Barry and Maria. (Barry and Maria were originally to take me in their car to Rugby, but as I can't now transfer to a car they joined me in the mini bus.) I was so happy to have their company. John, the driver, was brilliant, a lovely smooth safe drive. We arrived just on time, and I was thrilled that my girls came out to meet me. Wonderful ! I was escorted to the front row in the church and so had a brilliant view. People came to welcome me . It was lovely. But he best bit in the service was when my other grandson, Mallae spotted me and  Wandered up saying: Its grandma. Grandma, Ive got tigers , Grrrr !!! How lovely was that.! After the service, we all went back to the Dun Cow in Dunchurch. There was a splendid plates of food and lovely cake   and I had lots of glasses of champagne ! YEY!!! We left about 5:00 and got home by 9:00, Just prior to leaving I had a word with my children's dad. I said goodbye , as I doubt that I will see him again. I found it very emotional. But necessary. I'm glad I did stretch myself emotionally.

On Sunday I went to hospital to have a supra pubic catheter fitted. This episode might well form the basis of a book !! Certainly no time now to write about it. Basically I had feared that people wouldn't know much about MND and thus the handling of my body might be an issue. It was. AND it was far far worse than I ever imagined it could be ... just a quick example.. 1, I was asked to undress and when I said I couldn't, eyes were raised, : not at all they said ?NO i responded. 2. I was asked to raise my knees, I responded, Well you put them in place please.They slithered down. Why have you done that I was asked ! Because I have no control I tried to explain.    3.  But the best (!!) bit, was when a hoist with a too small sling was used. It cut into my legs. I was flat on my back in the air and my legs so splayed that they wouldn't come out of the wheelchair, without considerable pain. I was told I had to suffer the pain for a while whilst they managed me!! Boy did it hurt. But the freedom without the urethral catheter is wonderful ! That type of catheter truly must be a legal form of torture. OK my tummy is sore , but it's nothing compared to the pain I had with the other sort.

Since Ive been home . Ive rested , grateful for the wonderful sunshine. These pics were taken today as I sat in the sun.

looking to the right 

straight in front of MM 

looking left from MM 

HUG ME. I'VE GOT MND

HONEST, I HAVEN'T DESERTED YOU !!!

Since I last wrote I have been busy, busy, busy.

I eventually got the date for my catheter op sorted. (After 5 phone calls !!) AND I was right ! My dates were correct, so I am due to have it on Mon next ,( 6 more sleeps !)

I ,perhaps, could have found time to Blog last weekend , but actually I indulged myself in painting. It was bliss! I completed 3 pictures and am well on the way with another which I had started.

Monday was busy with physio, Laura (cleaning), Tesco, Becca doing my nails (deep purple), Dr Solomon talking about  /discussing End of Life Decisions (not easy ,ever) and  Janice, my artist friend, coming for lunch (3:00 by the time we ate !)

I've had two new night sitters recently. Consequently, I am extremely tired, as I never sleep well with a new person.

Today I went to the Hospice and Martin ( whom I know as he was hospital Chaplain when I was a presenter on  Hospital Radio , at Halifax, and from when he did assemblies at my school in Hebden Bridge), and Hal, came in to sing with us. It was great ! I had my nails cut and a foot massage and a quiet snooze in a corner ! The bus that transports me is new and my wheelchair was placed in a virtually empty ambulance right in the middle. I felt every jolt and needed paracetamol for the pain on arrival at Overgate. Tonight I should have had standing practise , but was too tired. I'm writing this then cooking meal. Karen is the night sitter tonight, we get on well and she will help me shower.

Tomorrow I go to Sheffield to see Prof Shaw. Well I hope I will!! Snow, wrong ambulance, no ambulance, mean that this is 4th time lucky !!  This will be a long day.

On Thursday, my college friend, Christine is visiting from Cambridge. YEY !!!!

On Friday Laura comes, then physio,  and Barry will visit for a catch up in the afternoon.

On Saturday, I go to Rugby for the Baptism of my newest grandchild. This will be a mega journey and as I'm hiring the minibus, not without cost. I'm soooo looking forward to seeing people. It will be fun . But it may be sad also, as it may well be the last time I see some of these people. I doubt that they will ever make it up north. BUT Barry and Maria are coming with me, so they will be a great comfort,  I'm sure.

So on Sunday a lie- in was planned,had I been able to arrange people to get me out of bed later than usual. BUT I have to go into hospital in Huddersfield at 2:00. Actually, I don't need to go until 7:00 on Mon morning, but there are no carers to get me up early. My op is on Monday and I will come home on Tues.

So , a busy week. I trust you will forgive me if I don't Blog for a while. OK??

Hope you like the music I am leaving for you.......But most especially for all of us with MND.

HUG ME, I'VE GOT MND.

DISASTER MOVIE AND PIC !

If you read yesterdays Blog you will know how I fell into the base of my bed ( a drop of 8"), and got stuck.
Here are two pics of the bed afterwards.

And for tonight's disaster, I made a movie !
It doesn't look as bad as it was.... but if you are in a wheelchair and hot fat and potatoes drop on your foot.... it's not good !! Fortunately I wasn't hurt , but do have greasy mess on the floor. I now have to avoid the mess as the wheels would perhaps slip if I went in it and if I did go through the mess there would be greasy tracks on the carpets.
So I will ask my night carer to clean it up at 10:00 when she arrives. It's now 7:30 ish !

HUG ME, I'VE GOT MND

O0O0O0H, WHAT A NIGHT ! WHAT A WED.NES.DAY NIGHT !

My carer last night was called Jay. Jay had been with me approximately two months ago.
Since then so much has changed in terms of my needs.

I had thought I would shower but decided to wait until Thurs as Jay did seem very anxious at the thought of using the hoist. I decided a simple regime would be best.

When it was bedtime the fun began !

I had said all my clothes are OK to wear again ,except, my underwear. Underwear goes in the laundry basket which is in the utility room.
So why did she ask about every piece of clothing ? Why couldn't she find the utility room?  After all there is only one room with a washing machine and dishwasher in !!!!

I feared her helping me into bed.
I was right so to do!

I explained that I could move myself a little, but not, if there was anything in my way, like a pillow or blanket. So why did I have to ask three or four times for these items to be put on the floor ??

Anyway ,without going into too much detail, I was in bed with light off at 1:00am. I arranged that she would wake me at 4:15 to turn me.

This is where the fun begins.
I did get turned, indicating, leg by leg and move by move, how I should be turned.. I tried to snuggle down, but knew I was too low in the bed. I also had burning feet. Efforts to move me up the bed  were attempted. (The full version of this lasts about 20mins !!! ).

Jay got a cloth to cool my feet.
I tried to sleep, but found I was too scrunched .
I called to Jay.I now needed to use the bathroom and this would be good because on my return I could be placed "up" the bed, in the correct position.
Now, to get out of bed, the back rest has to go up, ie like if you wished to sit. But my bottom was so far down the bed. It was the middle of my back that was resting in the place where my bottom should be. Jay moved my legs towards the ground . In order to try to help myself to a sitting position ,I held onto the foot of the bed.
And that's when it happened.
As I pulled towards the bed rail, the mattress gave way , dropping me down six to eight inches. I was wedged between the mattress and the end of the bed.

I felt as if I was about to fall through so I pressed against the end of the bed. Now what should happen, dial 999 ? or in fact what did happen... Jay came into her own and pushed me up from the dip as I pushed too.

I sat on the edge of the bed, gasping for breath as a result of the shock.
A toilet stop,and  a few cups of tea laterand  I  relaxed (!!) , in my chair. I was there as the day carers came .
I wrote a report of the event and emailed it to my OT and Physio.

A few hours later three men appeared. They fiddled with the bit of plastic that had popped out. It was a holder for the mattress that actually wasn't needed. But as to the dipping mattress it turns out that the button that lowered the base had been pressed. As feet are light the mattress stayed level , even though it wasn't supported. The result was, that when I went on to the foot area, I fell through onto the base.

I did feel embarrassed that I had caused such a panic, however the whole episode gave me a huge shock
.I was, and still am, very shaky.

And all of this on only three hours sleep.

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