My daughter, Noreen, is delightful, with a mischievous sense of humour and so loving. But because of her disabilities (she has learning disabilities, is quadriplegic, blind, epileptic and without speech), Noreen requires full-time care and I worry about the future.
Noreen celebrates her 36th birthday this year, and I’ve been her carer for her entire life. It’s been an incredible journey, but I do feel worn down.
There is little support or flexibility from services, especially if there is a crisis situation. I have no family close by, and my neighbours are elderly. It’s very difficult to plan for an emergency situation.
Lack of local quality services
I currently receive four hours respite care a week from the local authority. I’m grateful for any support, and I have to say that the current care worker that comes in, is great; she is experienced and has struck up a great relationship with Noreen, making her feel comfortable. However, four hours isn’t enough, and I don’t know how people in a similar situation would cope.
With little support, I feel under pressure. To be able to continue to provide care for Noreen in our home, I know that I’ll have to make adjustments. I have installed a downstairs shower and a hoist in the bedroom, for when the time comes that I can no longer take Noreen up the stairs.
I’m 68 years old and I really worry about what will happen to Noreen if I can no longer take care of her at home. There is a lack of quality services available locally. I don’t think that the local authority has many options, and the decision would be based on choosing wherever there’s a bed available, rather than the appropriateness of the care.
It’s important that Noreen is in an environment that is suitable for her needs. If she’s not happy where she is she’ll become incredibly unhappy. She will not eat or drink, and will refuse medication – this happened recently when she was in hospital. It was awful.
Planning for the future
I think a great deal about the future, but have not been proactive, so maybe it’s my fault that I don’t have a proper plan in place, but I, like many people in my position, need more information and support.
We need greater investment in social care so that we can tackle the pressures facing families with better planning for future care needs. The cost of inaction is clear – inadequate planning and lack of provision simply shunts disabled adults into crisis placements which are challenging and frightening for the individual and inadequately meets their needs.
After a lifetime of caring, no parent should be left neglected and living in fear about the future.
Two thirds (67%) of families caring for disabled adults with complex needs live in fear of what will happen to their loved one when they are no longer able to provide support. Three quarters of family carers have no long-term plan for the scenario.