Mum’s Story - Part 3

Mums story part 3


February 2014


Howard turned 19 this February, and things have slowly, but surely, moved on since

my last update.


On the 16th October 2012, almost a year on from his Stroke, Howard left the RNHRD

in Bath on a bright and sunny day by ambulance. I joined him in the ambulance with

Jezz following behind by car. The car was stuffed full of all of Howard’s stuff! It was

a sad farewell to some of those special people that cared for Howard and it was

scary too, even though it was something we desperately wanted to happen, the fear

of the unknown, the thought, will the grass be greener? was strongly in our minds.

However, after some teary farewells we were on our way back to Devon, to a brain

injury unit in Plymouth, full of hope and promise that we would get our boy home at

Last.


I had fearfully sourced what I considered to be the best, of little choice to be honest,

for somewhere for Howard to go before coming home with us to our bungalow. This

process is a very hard one to deal with for someone you love, you so, so badly want

to get it right for them. This was a set up that we had to agree to because they

would not allow him to come straight from a hospital directly to his family home. This

was somewhere nearby for us, with me working in Plymouth, it meant Jezz could be

at home with me to help with the next stage. Howard was to have a small flatlet of

his own with a 1:1 team of staff to care for him. I had envisaged a couple of week

period before he would be back with us, but the reality of this was not the case, not

at all! Even though we had been advised about the required adaptations to the

bungalow, and the work had been done by the council, the hoist had been put up,

the doors widened to allow for Howard’s wheelchair access, a ramp had put in to the

front door and a wet room put in, it transpired, after Howard came for a home visit

with Jezz, myself and his carer one day, that the bungalow was far from adequate for

his needs! We were gutted, I mean, seriously gutted! Then different OT’s came and

the realization that what we had been told that the property was really good, as good

if not better than we could expect and that we were very lucky, turned out to be just

not big enough. Our hearts sank. They had all got it wrong. Howard could not

come home to our bungalow in Chillington after all.


Time went on.


There have been times when people would assume that because Howard cannot

speak or move that he hasn’t got a mind, a thought, feelings or an opinion or any

idea of what is going on around him. Some people will not communicate because

they are afraid of the technology he uses, because they cannot understand or see

past the visual impression they get.. They don’t take the time, they don’t read the

details, they don’t do the best for the “person”. They tick boxes and think that, that is

doing their job. These times made Howard very, very unhappy. There have been so

many times where we have felt utterly useless and powerless to make anything any

better for Howard. Let us all never assume anything about anyone, we should take

time to talk, to ask questions, to allow people to share their thoughts and opinions as

we would all have others do for us.


Imagine. Imagine not being able to move or speak, to scratch your own itch!.

Imagine not having any control over what is going on around you. Imagine how

desperate we were to get Howard out of an institutional setting and into his own

home. Imagine how difficult that whole process would be and was.

Well, two Christmas’ passed and then, after trying to get Howard his own mortgage,

which we did, quite successfully, only to find it was not enough money for him to

purchase a property the size he required in the location he required to be back

home, something wonderful happened…..


A group of four people set up a trust for Howard. The idea was that when any

medical advances became available for someone with an injury like Howard had

suffered, that they would pay for him to have treatment to “re-wire his brain”, help

him to move and speak again. They would send him anywhere in the world that he

needed to go. We did not find such a thing and times were hard. Emotionally for

Howard everything was bad. He hated being where he was and he wanted more

than being stuck in such an institution, well, the trust made a promise to him before

the New Year 2014. They were going to buy him a house, in Kingsbridge, where he

wanted to be, and they would have it adapted according to Howard’s needs and he

could rent it from them. I pursued the idea of the Individual Health Budget for

Howard and we got the go-ahead! I had kept on and on about this for a very long

time, and nobody seemed to know what this meant or how available this would be for

us. Well, I got there in the end. We could now look to recruit Howard’s own

handpicked team, who should fulfil the criteria as set out by Howard and look to a

new and fulfilling life.


But this is not all…… Howard, despite what the professionals

told him, persuaded us to enable him to eat food orally again. His speech and

language therapist was not really into this idea at all, no get up and go, no

enthusiasm or vision, but Howard fought against her. Jezz explained all the potential

problems to Howard and having made Howard aware of all of this, Jezz agreed to

help him. Bit by bit Howard has eaten all of the things he missed so terribly – the

joys of chocolate, pizza, delicious cakes, crumpets, ice cream, jellies (about 20 a

week now!!) bacon and egg, curries, cottage pie, apple crumbles (made by granny)

fajitas! You name it Howard has eaten it, he has come on leaps and bounds. No

chest infections at all. He passed his videofluroscopy like he knew he would. He

has now begun, with a big effort, to suck a small amount of a drink through a straw.

He now eats orally all of the time, with his PEG only being used for meds and fluid

intake. Hopefully this will become redundant too in the not too distant future.


Howard

is fighting – he has been working hard on exercising and his neck and head

movements are terrific. He has had the side supports moved from his wheelchair so

that he can practice holding himself up. He has the headrest taken away on his

wheelchair so that he can practice holding his head up unaided. He went, within 7

days, from being able to sit on a bench holding himself up, sitting, using all the

muscles in his torso, from 3 minutes, which excited us beyond belief, to 14 and then

to 40 minutes!! He is so determined, he works so hard and fights against all those

who do not believe he will ever do anything, and he constantly proves them wrong.

He is full of spirit and determination and we are so proud of him.


Howard can also now control his wheelchair on his own. It has a bracket and a nob

on it which he manoeuvres with his face and chin, he whizzes around the park

across the road and the building in which he resides. He scares the life out of us

with his gung-ho approach, but he has found a little of the independence that he

hungers for. When staff upset him recently, he drove his chair into his bedroom then

reversed back against the door locking them out!! 3 hours he kept them out! They

had to watch him through the window to make sure he was ok. I think he made his

point, and the funny thing is, they never saw it coming!! It made us laugh and it made

us proud that amongst all of this unimaginable sadness Howard has kept his teen

Spirit!!


The trust are also buying Howard his own FES bike! (Google it, amazing piece of

machinery!) A very expensive device which will enable Howard to work on his arm

and leg muscles and movement from the comfort of his chair! It is an awesome

piece of equipment which we could never even have hoped for were it not for the

trust, to which we shall remain eternally grateful. We are still awaiting delivery of this

awesome beast, but are very excited, and Howard can’t wait to get his hands and

feet on it!!


So, next time I write will hopefully be an update about Howard’s move back to his

home town. Howard will be advertising soon for his dream team – so keep watching!

If you haven’t yet read my part 1 and 2 of our story, you must read them to see just

what Howard has achieved so far and why we have every reason to be so proud of

our son.

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