I worry about the future care of my daughter

A smiling younger woman sits on a seat holding the hand of an older woman, her mother, who is kneeling at her side in their living room

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.

A smiling woman sits at a table in her living room

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

A smiling woman holds a pink plastic ball. A young woman with complex communication needs reaches toward her

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.

Read the report When I’m Gone: Securing long-term care and support for disabled adults.

Author: Inge Ahmad

Inge is 68 and cares full-time for her daughter, Noreen (35), who has learning disabilities, is quadriplegic, blind, epileptic and without speech.

6 thoughts on “I worry about the future care of my daughter”

  1. Dear Inge and Noreen, My husband and I care for our daughter who is 37 and we are 65. Elizabeth has Lennox Gaustaut syndrome a very complex and drug resistant form of epilepsy. Our concerns are for her future. Will the standard of care in residential be the best and will she be happy, Elizabeth doesn’t talk much but she has a wonderful smile. How will I be supported in the transition, my husband can’t bear to think about it. I do try to have movement and handling training because in the past I have damaged my back. My own health has suffered trying to get the best possible funding. Elizabeth goes to a small Day Centre Monday to Saturday and she is happy, has friends and day trips. She has a PHB budget and regular reviews. Sending special thoughts I hope you can get more help the current situation is creating emotional and mental health stress for many Carers.

  2. How can we plan so far ahead for young adults when we simlpy have no idea what (if any) social care/continuing health care options will be available?

    1. We agree there needs to be more investment in the health and social care systems to make sure enough high-quality services are available in the future. In the meantime, we believe it’s never too soon to start planning – plans can be updated and changed as your circumstances change. You can download our new toolkit: Decisions to make, steps to take at: http://www.sense.org.uk/helpfamiliesplan

  3. Dear Inge and Noreen

    I was so sorry and saddened to hear about your situation because it is very worrying and I feel for you both. I have a similar problem in that I am 62 and care for my 36 year old daughter. I am lucky in that she can still work part-time but when she gets home she is so exhausted that she cannot do much at all and I do almost everything for her as well as myself. She does not want to give up work but has admitted that she feels she has gone down a level lately and cannot seem to get back up to her previous level. Things are much harder for her and I worry so much what will happen when she cannot work anymore. We rent privately and my salary will just about cover everything at the moment but if I retire (which I will have to do from this company where I am in a few years time but I will have to look for something else) no way could we manage. I shall have to work forever I think. I have tried to get into accommodation which I can do for myself at my age but they will not take my daughter even though she is not well so I have no alternative but to keep working. I worry a lot about the situation. I do not have family here and cannot get out to make any friends and feel exhausted at the moment. I so much hope that your situation will improve and you will have an answer very soon.

    With kindest regards

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