Older Family Carers
and Adults with Rett Syndrome
Adults with Rett syndrome
We realise there is a need among older parents and carers for specific
information and support relating to planning for their daughter's or son’s
long term future. We appreciate this is not an easy thing to think about,
and hope that some of the information below will help you to begin to do
this. We very much invite and welcome your views on how best we can support
you. Please see our online questionnaire.
Parent/Carers – Growing Older
We all grow older, and as a parent/carer of someone with Rett syndrome you
will inevitably reach a point where your capacity to continue caring may
become increasingly difficult. This could be for a variety of reasons;
perhaps because of health issues – your own or your daughter's or son's;
insufficient equipment or general moving and handling problems. Or it may
simply be that you are no longer able to meet the needs of your daughter or
son in the way you once could.
Emotional Impact
Planning ahead isn’t just about making practical arrangements. Thinking
about the future will naturally bring up feelings of anxiety as you wonder
who will be involved in supporting your daughter or son and whether it will
be good enough. As always we are here to listen to your individual situation
and to talk through any difficulties you may be experiencing.
Accepting that we are all mortal is difficult for many of us to do, and it
is estimated that approximately 2/3rds of the population have not made a
will to ensure their offspring or dependents are provided for. For a parent
or carer of an adult with Rett syndrome it can be even harder, and very
frightening, to think about a future for your daughter or son without you
there to ensure they are properly taken care of. We know from research that
moving an adult with a disability into residential care in a crisis usually
ends up with that person being inappropriately placed. When this happens, it
does of course feed into the very fears parent/carers were worried about. It
is also generally believed that many older family carers know little about
the alternatives to residential care that are becoming increasingly
available. See the page on Housing Choices for more information.
How you can help us to help you
We are really keen to know how we can best support you. At the moment
though, our records do not indicate the ages of our member parents or
carers. We would also like to know what kind of concerns you have about the
future, and hope you are willing to complete the Older Family Carers
Questionnaire either
online or by
downloading a questionnaire. Alternatively you can call or
email any thoughts you have. We would be very pleased to hear from you.
Our aim is that – with your input - we will be
able to give those family carers who would like to plan for the future, the
information and support they want.
Once we have
collated all your views we will then be able to move to the next stage to
look at the best way forward. We will let you know how we will do this,
through Rett News and our website. We very much want to hear what you think
would be helpful, and there is a space on the form for you to note any
comments or ideas you have. All the information you supply, will of course,
be treated as confidential.
