AND SO... THE LATEST TOILET SAGA !!

It started on Monday , the day I was 64 plus 1 day !!
I was showered and about 30 mins later I needed the loo... I couldnt get off....... I had to call for my daughter , Eliza, to help me.
How awful for a child to have to help her Mum off a toilet. But Liza was brilliant and just got on with it.
During the afternoon  all was well . But in the evening it happened twice more. Liza to my aid.
We both felt stressed.
On Tuesday morn I realised I had to do something. I got through to Michaela at the the rehab team. I explained the problem. Liza was going home. I would be alone to cope. It was hospice day. M felt I should go and that she would be in touch.
AND... she was ... She contacted Overgate Hospice, and explained the problem. Liz at the hospice spent much of the day with me helping me to come to terms with the situation and explaining the possible help I might get.
Michaela kept in touch.
The answer was emergency respite carers. But ............. there were none !
I was very upset, as I had flagged up the problem of my getting off the toilet about a month ago. The solution to this was to have a riser placed in the chair above to toilet. It should have been ordered. BUT  whilst this had been tried to be ordered there was no urgency attached.. So no riser available as no invoice..  No riser in place.... no planned help !!!!  The OT eventually asked for a manager re the riser order, and it was actioned BUT no funding actioned.....
However, Eventually.............  the order was put in for this riser, but finance not agreed ! So email sent.. Not followed up....
At this point I was furious and weeping. I had alerted the OT to the need, and ,that as I can see how my body is weakening I knew I would have a problem within a few weeks.........
Liz , at hospice was obviously concerned and cared for me whilst I wept.
Fearing a night alone and unable to get off a toilet, I contacted a friend and asked her if she would stay the night. Kindly, she agreed.
I had a phone call from  Liz Thorp to say Calderdale Matron would be consulted. BUT , Sadly there was no capacity for emergency care , as there should be !!!! Would I be safe tonight ?...
Well yes I would, thanks to my organising a friend.

NOW, It may be peculiar to me... BUT... I simply don't wish to mix friendship with care. Care I pay for and friends do things because they love me, and help in emergencies... but generally they are there to enrich each others lives... not to get me off the toilet because the system fails !!!!!!


ANYWAY.....So my friend came in at 6 and I went to the loo. She helped me off. She returned at 8 and we shared a pizza and drank some wine. She helped me off the toilet.
At 6 on Wed morn , I needed the toilet.... I went and as I was rested managed to get off by myself.
I had arranged that my PA/ cleaner , Laura would come in early at 9:30. I felt safe.But soooooooooo let down by the system.

My friend left at 9 . Lara arrived at 9:40. Splash arrived and showered me at 10:45. This was just completed and I needed to rest with a coffee... and yes a cigarette.... When there at the door was Matron Lyn/Lyz Cliff and a social worker.

They said I gather you have a crisis .... I wept. The social worker was kind and understanding and said take your time.......... The Matron..... continued, that the only option available was for me to go into a rehab place at a care home. She added that the max time I would be there was 6 weeks .. ( SIX SODDING WEEKS !!!!).... She felt hat I might get better given this time..... I said that MND didnt work like that. !!!!!!        She felt that with aids I might manage better !!!
AIDS!!!!!!.. I knew that Michaela and Bethan had been working their socks off analysing  aids ...... what I need is the spacers for the chair over the toilet. These should have been organised weeks ago. I had alerted all to the fact that my legs were getting weaker and that I would need more height to get off toilet !!!

RATS RATS,,, It's bad enough having MND, ...........feeling you have to drive your care is bad enough... but then, when it isn't actioned... it's simply shit !!!!!

The question of a care plan came up.... and it has been actioned that I meet with the planner on Monday... However care goes from a social worker assessment... this was done mid Dec... my needs have changed so much since then... they change almost daily....
 don't they understand how MND (ALS) , works ?? 

The other issue was a catheter  My thoughts are, that if someone is in my home in the morning when my bowels open, then the rest of the day is covered by having a catheter.

So Matron was all for fitting one NOW!!!! I said no. I believe I need a supra pubic catheter  She said that could take ages, You have to see a urologist. Absolutely I said, I don't want to go in to this lightly  and need to see a specialist who will explain the pros and cons of each type of catheter.

Matron still said there was no carers available and the care home the best option..

Meanwhile we all knew that Michaela et al would be bringing a commode and slider which may help.

At 3 the team arrived.

We moved the bed , tried the commode, but the energy required was too great to manage..
I reminded the team that I had no problem (well little problem ) getting out of bed, into w, chair and getting to toilet. It was decided that the commode could be in the spare bedroom....

BUT.... NEWS !!!!  An emergency person would be be able to come in between 9 and 9:30 on Thurs and Fri and as of Sat a career will come in twice a day.

SO, now I have to make sure bowels move to order !!! BUT ,if they don't the commode is there.
The only word is SHIT... Literally LOL !!!!

So if the care planning gets sorted I shall employ a morning person, and have a commode for the rest of the day, until a an appointment with a urologist is made.....

What joy.

I've shed many tears...........
all I want is independence and dignity..........
I know I will pay for this .......
but even allowing for this, the backup has failed.......
what more can a person do ????

HUG ME. I'VE GOT MND.