September 2018 – News Flash!

We have amazing news … and we are in tears of joy and cantquite believe it has happened but someone known to us has donated £5000 for a car.. they wish to remain anonymous but we cant thank them enough – we are just waiting for the cheque to clear and then we will be looking for that much needed car.

The crowd funding page is still open and we have £50.00 so far which will go towards the insurance and if any more is donated this is what it will be put towards …

We are so excited Brian loves going out in the car!!

THANK YOU !!!!!!!!

So September is here and the family have been bust caring for Brian.  We have appointments nearly every day and the house is always bustling with people.

The good news is that we have two carers helping us out during the day Leigh and Victor both lovely people and everyone gets on very well.

We have started a crowd funding page to see if we can raise money towards a car as we know that it will be a long haul.  To give you an idea we made £6.00 at the local mini market the other day it will take many sales to get £5,000.

Brian has managed to get an infected rig (the tube in his stomach for fluids and medicines) and we have been treating this.  Today Stella from Nutricia came to change the tube it is very cleaver how it is completed and she is excellent at her job.  For now he has a clean and healthy tube.

Hospital:

We have just returned from hospital as Brain collapsed at recent consultants meeting when we were discussing his epilepsy.  They found an infection in his lungs and blood which we had thought was there and now he is on antibiotics.

Trips Out:

Brian has been able to go to the meridian centre somewhere he has not been in 3.5 years he even came to visit his daughter  at the mini market stall.  See pictures … we can’t wait to get him out to more places.

At the moment Brian is recovering well …..

Well folks it has been a long time since we have updated our Blog and the reason is that it has been as hectic as hell.

We have continued to fund raise through completing our car boot sales and mini markets and managed to raise enough money for:

We then continued to fund raise for a car and managed to get to £2,500 towards the £5000.

All Change:

So in June social services came to review Brian and decided that they would no longer provide any care for Brian overnight just the day.  This was a complete shock to us as a family as Brian still has seizures in the night and cannot do anything for himself.  As a result of this the care home where he was staying gave us 28 days notice to leave as they felt they could no longer care for him with these constraints.

We were so shocked but even though we appealed and challenged this we were advised that this was their decision. Adult Social Services has a £6.5 million deficit in East Sussex and they have to get the money back.

So we had 28 days and we were at the stage of reading our building regulations (we were on page 28 of 44) ready to start our build following a lengthy planning dispute with the neighbour.  There was no way we were going to get everything completed in time so we had to have a plan B.  Brain was coming home he was not being sent anywhere else.  We decided to clear out the lounge of furniture (possessions are not important) and make the conservatory a lounge.  We needed to have a ceiling hoist put in so we spent the £2500.00 we had saved for the car.

In addition to this we had a family friend do some concreting outside for free and we purchased a new wide front door and had two doors removed as well as having a ramp installed up to the front door and between the now bedroom to lounge.  We obtained a bed, mattress and arm char.  We also met with a recruitment agency and started to recruit staff who would come in and work with Yvonne during the day to care for Brian.  You must have two carers each time you hoist, wash etc..

The other major change was that Sharon Brian’s daughter gave up her home and her job and moved in to be a full time carer.  She now is unpaid Waking Night Carer 7 nights a week, this has been proved to be a good thing as Brian has already had seizures at night something that adult social services said did not occur.

Fundraising:

As everyone knows we still need to raise funds but of course being carers now means our time is so much more limited so we (one of us) continue to run the mini market on a Friday and hopefully maybe the odd boot sale.  We really need a car for Brian to get out and about but if you are over 70 you are not entitled to mobility allowance.  Crazy as you still need to get around …

Home:

13th August was a very eventful day  – Brian arrived home but not before scaring the life out of us by having a seizure just as he was leaving meaning they he arrived home 3.5 hours later than he should  have been.  Thank you Derek Watts for driving him and waiting around for all those hours J

Brian was overwhelmed as were we when he first arrived home.  I think the realisation of what he had been missing was so much but we spent a lovely night together and we are so proud of him.

More to follow about Brian in the coming months ….