Life after a stroke can be a struggle.
It can result in weakness or paralysis on one side of the body that may affect the whole side or just the arm or leg; it may also affect speech and cause a loss of confidence.
A stroke does affect everyone in the family, especially the spouse, who becomes a personal nurse/helper 24 hours a day, 7 days a week, often without preparation.
ICARE has shown that, with the right rehabilitation, tailored to individual needs, client’s mobility, speech and confidence improves, which, in turn, improves the quality of life for stroke survivors and their carers.
It is also clear that our clients support each other and, within this peer group, realise that they are not the only people suffering as they do.
Strokes affect everyone differently and ICARE therefore operates in a very client centred way, looking at what each individual needs. For example:
- different days of the week have different emphases and clients are offered the day which best serves their needs
- our professional speech and physiotherapists assess each new client to see what will help them most and individual programmes are tailored accordingly.
The outcomes for each client will vary but can include:
- improved speech and mobility;
- recovery of confidence and social skills;
- building friendships and mutual support;
- greater independence;
- reintegration into the community.
There are important outcomes for the clients’ families and carers as well, including:
- regular weekly respite
- advice and support.
A very telling measure of the positive impact of ICARE is that, almost without exception, clients do not stop coming unless they are forced to do so for health reasons.
I had known John for a couple of years when he had his stroke in May 2014. We were due to
go out for lunch with friends but it became clear that John was not himself. My Mum had
suffered from TIAs and I noticed that when John walked he was stumbling a little, almost as
if he were drunk, so I decided we were going to Lewisham A&E.
John was quickly taken for all sorts of tests. When seen by a stroke specialist, they said that
they thought John might be going to have a stroke, so we were taken to Kings. When I left
John that evening he still had mobility but the next day when I arrived I was shocked to see
that his mobility was impaired. He had a clot on the brain, but we always felt that because he
was in Kings the impact was reduced.
John remained in Kings for about 4 days then he was transferred to the stroke unit at
Lewisham. He received support here but still had very limited mobility.
Eventually he was able to come home. We had carers each day to cover his personal needs.
We received a lot of support from Bromley SCHRehN, a specialist neurological service for
stroke patients, but I became his main carer in my new home.
Bromley SCHRehN was due to stop after 14 weeks, but I think we were allowed an extra
week or so because of the move to my new house. SCHRehN had been our lifeline. John
had made so much progress and had learned how to manage the stairs by the time they left
us, so life was getting back to some sort of normality.
When they left there was a feeling of being abandoned and wondering who was there for us
now and how could John continue to make progress. I was suddenly the carer, but with no
training, no experience and no support. We understood progress from the stroke could be
over years but here we were, months after with no support. John continued with Speech
Therapy and Physiotherapy at Orpington Hospital for about 6 weeks, which helped his
mobility and speech. But then that stopped and it was just us again.
In the waiting room at Orpington Hospital we saw a leaflet for ICARE, and not sure where we
were going to have any future support, went to see Pat George. I remember not being
convinced that this would suit John, but when offered a place he was determined to try the 4
week trial and has never looked back. I remember him saying how good it was to talk to
people who had a stroke and could understand what he was going through. John had lost a
lot of confidence and found it difficult to engage in conversation. This has gradually improved
and four years on he is President of a local Rotary Club and has to run the meetings every
ICARE has been our lifeline for the past three years and we look forward to the continued
support. I have got to know the staff at ICARE and feel that there is someone that I can go to
for support as well. The day that John goes to ICARE gives me a day’s respite. John enjoys
the friendship and company and finds the activities help his progress. The recent additional
physiotherapy has provided new support and this is welcome. He enjoys the art and now
uses his left hand effectively to draw. The activities challenge John to use his brain. John
really looks forward to Wednesday. ICARE has helped us both so much and I really don’t
know where we would be without them.
John’s story of a stroke
May 25th 2014: I woke that morning and went down, as usual, to make a cup of coffee for us both. I
remember being aware that the cup felt heavy. I didn’t think too much of it. As we were going out to
lunch and I didn’t feel 100%, I asked Pauline if she would drive. As I stood up she said I didn’t look
right and decided we were going to A&E at Lewisham.
They did all sorts of tests and scans for several hours until they announced that they thought I might
be going to have a stroke. They transferred us to the stroke unit at Kings. They gave me a new
drug called Clopidogrel. I slept well that night after all the drama, but when I woke in the morning to
my horror nothing on my right side worked. The stroke had been overnight, though thanks to this
new drug the effects had been limited.
I remember the sheer horror of realising that my right side didn’t work and my speech was slurred. I
was worried that I wouldn’t be able to do anything. When Pauline and the family visited I could see
their shocked, worried reaction and remember bursting into tears.
After about a week I was transferred back to the stroke unit at Lewisham. Then the real treatment
began. Physiotherapy began with exercises everyday. They could stand me up, turn me in a
revolving base and into a chair. I had to rely on someone to do anything.
It was six weeks before the hospital considered that I was ready to go home, if there was someone
to care for me! I remember all the things I couldn’t do. It was impossible to dress myself and I felt
inadequate; I always had to depend on someone else.
Physio had been transferred to the SCHRehN team in Bromley. They also provided occupational
and speech therapy. SCHRehN were fantastic and helped so much. Once SCHRehN had finished
we were offered physio and speech therapy for six weeks at Orpington Hospital. This was helpful
but soon came to an end. My walking was better and my speech was much improved but I really
Luckily in the waiting room at Orpington was a leaflet for ICARE. We went for an appointment with
Pat, the then manager, and whilst not convinced at this stage that it was for me, when a place
became available I accepted the trial and have never looked back.
ICARE has helped me to have the confidence to talk with others. I have learned to draw with my
left hand and enjoy my art. I continue to have physiotherapy so hopefully I continue to make
progress with my movement. With us aIl being in the same boat, I realise that I am not alone in
coping with my disabilities, and have people who genuinely understand what I am going through.
Most important I have made lots of new friends. I really look forward to my Wednesday.
Four years ago I thought life had ended. Now I am proud to be President of my Rotary Club helping
to raise money for charity – ICARE and others. I thought I would never travel again, but it is
possible. I thought I would never swim again but with a foam dongle I can. I can manage all my
personal care and dressing myself – except the tie, cuff links and shoe laces.
It is now four years on, and whilst I have needed to adapt, I don’t feel a ‘misfit’ any more. All in all
we manage. There are frustrations but we learn to live with them. Life is for living and I am
determined to make the most of every day!
It also gives me great pleasure to see other clients at ICARE improving. Sue, Wendy and the staff,
carers and volunteers are fantastic. They all deserve a big pat on the back. I thank every one of