My JOHN

I write of a man - an ordinary man, gentle and unassuming, a good
husband and father, a hard worker, honest and upright, now helpless as
a baby.

As I tend to his needs 24 hours a day, I silently curse the stroke two
years ago which robbed him - and me - of so much.

Together we grieve for the simple pleasures of our early retirement
years - days out in the car, visits to friends, holidays in the
caravan, trips on the railway, walks in the forest and by the sea. And
simply time to be, after a lifetime of work and hurry.

Inside I am crying all the time as I watch him struggle with the
paralysis which has taken his independence, his freedom, his autonomy,
his ability to work and play, his dignity.

In their place he has to cope with the inability to change even his
position in a chair, or lift his head off the pillow, pain, sickness,
discomfort and frustration.

He, who has so many reasons to complain, doesn't! While I want to
scream and rail against the cruel fate which he didn't deserve.

After six long months in hospital - nurses, doctors, physio and
occupational therapists, social workers - John was allowed home.

Now came another difficult period of adjustment. I had to learn nursing
skills, how to transfer a paralysed man from bed to chair, to commode
chair, to wheel-chair, etc., using an electric hoist.

Worst of all was learning to accept as best I could that the husband I
had now was but a shadow of the husband I had known and loved for over
40 years.

Together we had coped with all the joys and tribulations that 40 years
of marriage brings - now I had to cope on my own with the thousand and
one things husbands do and wives generally take for granted. Now came
the realization of just how much I had relied on him before.

John had to struggle with the growing realization that this was as good
as it was going to get - never again would he sit in the car, never
drive it. Never again would he hitch up the caravan, use his workbench,
mow the lawn or do little jobs around the house. Never again would he
climb the stairs, never stand, never walk.

So much of his past life was now no more.

Now evey aspect of our lives was open to scrutiny - privacy in our home
was very rare.

Care workers came 4 times a day (in twos), district nurses, doctors,
therapists - the door was seldom locked. While appreciating all the
help I was being given, at the same time I couldn't help resentment at
the loss of our privacy.

The house quickly filled with medical aids - a hospital bed, the
patient hoist without which care would have been impossible, wheelchair
and so on.

It also became apparent that this house, our home which we had built,
where our children had grown, where every brick, every corner of the
garden held a million memories, was far from suitable for nursing
someone so disabled.

Then came the trauma of putting the house on the market, deciding on a
bungalow, dealing with the builder to have wider doorways, ramps, a
disabled shower and so on installed. Packing up, throwing out, moving
to a new locality.

How John wanted to be able to put up the curtain rails, pictures and so
on. I saw the frustration on his face as he watched my brother and
others do the jobs he had done so ably in the past.

I remember my hand taking the place of his paralysed hand, while with
his other he made valiant attempts to wire a plug.

With the move, we now had to get used to a new set of carers - 21 of
them in 10 days - many of them very likeable, others less so.

All was not doom and gloom in those days, however. as many a joke was
shared with these carers who brought the outside world in. Some of them
became good friends and we looked forward to their visits.

We also looked forward to many years in our new home, where John was
now able to experience a little bit more independence as he moved
around in his electric wheelchair.

But after six months John's health started to deteriorate, leading to
more hospital tests, doctors, nurses, more medication.

All to no avail.

A short time later this ordinary man, who became extraordinary in the
way he coped with his affliction, was finally released from his
sufferings.

Yes, John suffers no more - but I suffer still.