Jane's Story | strokerehabandme

A Family Experience - Jane's Story

My darling husband John had a stroke one year ago.

Before his stroke he was healthy and worked at a job he loved.

One day he became unwell. Initially we thought that he had vertigo. His symptoms were dizzy spells and vomiting, he became very ill and was taken to hospital.

At the hospital he had CT scans, bloods, an ECG and further investigations. He was seen by the Stroke team and was diagnosed with a stroke. I was devastated. I was not sure what would happen but thought it will be a short stay in hospital then some rehab.

Pre Stroke Introduction

In the days that followed John was asleep for most of the day. I used to give him drinks with thickener to make it easy to swallow.

I've no real memories of him “talking" to us - he just slept.

A lot of things were going through my mind about the uncertainty of stroke. They included:-

What would he wake up like?
Would he know us?
Would he be the same?

I never thought of him not being able to walk, or never thought of paralysis of his hand, or his eyes not being able to focus.

Those first days I just struggled through in a fog, it was like I was a ghost walking through my own life and a bomb had gone off.

The most frightening thing is this had become our new life.

After 2 weeks in bed, he was sat in a chair at side of his bed and he screamed for help.

His balance was gone and he kept thinking he'd fall. That was so difficult to watch, he was hoisted out of bed and had a catheter inserted but occasionally he succeeded to use the bedpan.

Everything was a problem:

His eyes were fixed to the ceiling,
He talked in riddles - kept saying he was trying to escape, but was trapped
He lost 2.5 stone in weight and ate less than a infant mostly puréed food
He'd no real idea that he couldn't walk

I could see John had a long journey ahead and worried how we would manage.

Stroke Acute Care

Following a family meeting I was told John would be assessed by the Clinical Nurse Specialist in Stroke Rehabilitation to see if John would be a suitable candidate for further rehabilitation in a specialized unit.

I was so happy to hear he would get this chance and he had good potential for rehabilitation.

Assessment for Stroke Rehabilitation

John was transferred to Isolda Stroke Rehabilitation Unit in July 2016. We were welcomed by the staff which was so comforting.

I got offered a cup of tea and I felt we were safe. Singularly that was the nicest feeling and best way I could describe arriving at Isolda Unit. I felt that my most precious treasure (my husband) was safe.

The building is old fashioned but the team were so kind, so focused on us and I said to myself “so now we start to rebuild”

Arrival on Isolda Stroke Rehabilitation Unit

On the first day at physiotherapy my husband had no awareness of where his "body was " no idea when asked to stand or how to do it. He was fully supported by a hoist suspended from ceiling.

He had a long journey ahead.

We watched that progress on a day to day basis and it took months.

We thank God every day for those months in Isolda - there were sad, lonely and tough days but always supported by the team.

Looking at that video clip now it’s amazing what the team saw, how they got him to where we are now it's nothing short of miraculous.

We learned to manage our expectations and to have hope.

Those to us were the key ingredients to recovery.

My husband’s stroke was a serious one, but bit by bit with patience, repetition, love and the expertise he started to make a recovery.

The not knowing what to expect, not knowing will he ever be able to sit up on his own, never mind consider standing , will he be the same as a dad, will he be the same husband. After a year the answer is “no”. I couldn't admit that until recently you want recovery 100% back, you get envious of other people's progress. But with time comes rewards sometimes they are so tiny you'd nearly miss them. Progress is earned; repetition is the key, taking all the help you can get, playing music trying to engage with the staff and the team.

But the key is belief, the ability to get through this, inside you is the ability to rebuild.

Journey Through Rehabilitation

My husband has made great progress with all the support he received in Isolda:

We have retrained my husband’s eyes. They were fixed to ceiling after the stroke
He can not only sit he can stand and he can now take some steps with a rollator
He can walk in a fashion, but needs assistance outdoors
His left hand is a work in progress he has ataxia so the hand has power but it jumps around a lot, but again with perseverance and the proper exercises he has regained control
He now manages to eat his food and spill nothing!
He can email, and do all our household organising
The tone of his voice has changed dramatically and he can be hard to understand sometimes especially on the phone or if he's tired
His humour is intact and neither of us needs antidepressants and I'm very proud of that!!!!
His memory is as good as ever

We do have one or two missing chunks! Bank numbers PIN numbers etc. but recently these are coming back.

Do not believe that you peak or plateau after 3 months. We are still seeing improvements. After the stroke for two months he couldn't figure out what his phone was!!

Progress

We move forward now with hope - Isolda Stroke Rehabilitation Unit taught us that!!!

We will still travel, we will still see concerts, and we will still go to the pub for a pint. We will not stop living.

It's harder to get around it takes so much planning, but it's not impossible.

I refuse to let stroke take away our sense of adventure we will to the best of my ability have a normal life, it's too short to be lived in the one place!

My husband’s not the same but then neither am I but I'd like to think we are making the best out of this situation and in time with more practice my darling man can be the best he can be…As I say again.. Patience, Love, Hope!!!

To sum this journey up I'd say it was the hardest thing to date that hit me in my life. I was 48 at the time and knew nobody that had had a stroke! I've learned to recognise and embrace the tiniest things, any progress at all we celebrate.