Barbara's sister describes how Barbara was able to gain more
control despite her deteriorating health.
On the death of my Mother 10 years ago my sister Barbara, who
has Downs Syndrome, moved in with me and I became her carer.
Barbara was capable of looking after her personal and everyday
needs by herself. She happily attended Stonebridge Day Centre in NW
London - something my Mother would never let her do - she managed
to make friends and seemed extremely content with life. We were
also members of the Special Needs Club attached to our parish and
would go on outings and meals with them.
Six years ago I retired to Southwick in West Sussex and managed to
get Barbara into Glebelands Day Centre for three days per week
which gave me some spare time to myself. Whilst at Glebelands
Barbara received two certificates for Basic Learning Skills.
About 3 years ago Barbara started showing some changes in her
behaviour. She would hide and covet things that were not hers. Post
would go missing. This was the onset of her Dementia.
Even with the dementia she continued to attend the Day Centre 3
days per week enjoying the company, cooking, needlework and
Miserable and detached
In June 2004, just around her 60th birthday, Barbara was no longer
willing to get on the Community Bus to go to Glebelands, did not
want to use the toilet and refused to do other things that she
would normally do - like going out. I started to take Barbara to
the centre in the car. When I collected her in the afternoons I
found her miserable and detached from the crowd - where normally
she would be in the midst of it all! Having Barbara home all day
every day became very restricting for me and to be honest I felt
that I would not be able to cope with her and normal family life
with my children and grandchildren.
With the help of my Social Worker Barbara not only got the
attention of a very good Occupational Therapist, who visited weekly
and started projects with her that we and her carers, are
continuing today. I was also given a few hours per week respite.
which helped me to charge my batteries. My hours were increased to
7 per week again a little extra freedom but not nearly enough when
the task in hand is so very demanding.
Then came in Control. I was advised end August / early September
2004 that I was to receive a budget of £23,500 per year. In order
to get this money I needed to write an in-depth Support Plan
stating exactly who Barbara was, what her needs were and how I was
going to use the money. This Support Plan is being updated so that
each new carer knows exactly what Barbara needs as she is unable to
tell them herself. The full application process took from late
summer 2004 to 16th May 2005. A long time when the person being
cared for is deteriorating quickly and there's no indication of
when the budget for extra help is to start.
Since in Control has started I have a few hours off each day. I am
a far happier person and I feel that because I am more relaxed, in
general, my attitude to caring is a far better one, than a few
months ago when I began to resent everything I did for my sister. I
will also have the ability/freedom to have a few extra hours off
once the school holidays come around and be able to spend time with
my grandchildren - something I could not do before in
I have covered the additional care initially by using an agency
and the Alzheimers Society. To get extra hours I shall, in due
course, be employing full time carers. in Control gives one the
chance to use various options.
The recording of the budget both income and expenditure is very
easy, with returns to be made to West Sussex County Council and the
Independent Living Fund on a monthly basis.