Respite is an area that most parents struggle with. On the one hand you know you and your family need a break but on the other hand it is almost impossible to think that you need a break from your own child! It is something that is so hard to accept and I still struggle with it. Respite is different for everyone but in our world it means we get a break from having Carers in our house and it also means that my son gets to experience a different enviroment. We live with a carer in our house 24/7, the reality of this is that I never feel 100% relaxed in my own home, there is always someone privy to our life and this is very difficult to accept. Respite therefore comes into play when we just need some private time a break from care plans, scheduled medication etc and time to just relax at home with our children – the downside is my youngest son is not with us. I have learnt that this new world we live in is full of compromise an element I struggle to accept everyday….
Families with a child with a special need know the commitment and intensity of care necessary for their children. The level of dedication and care becomes part of daily life, part of the family routine, but this same commitment can make stress routine too. Parents can become accustomed to having no time for themselves or other siblings.
Respite care is an essential part of the overall support that families need to keep their child with a disability or chronic illness at home. Respite care is temporary care to persons with disabilities or special health care needs, including individuals at risk of abuse or neglect, or in crisis situations.
Temporary means anything from an hour to two weeks. It may mean periodically or on a regular basis. It can be provided in the family’s home or in a variety of out-of-home settings. Respite services are intended to provide assistance to a family and to prevent “burn-out” and family disintegration. Since not all families have the same needs, respite care should be geared to individual family needs by identifying the type of respite needed and match the existing need to services currently available, or using the information to develop services where none exist. Once identified, it is also important for families to have access to that type of respite in an affordable form. Regardless of the type of respite program utilized, the emphasis should be on orienting services toward the entire family.
It is obvious to anyone who has lived this life that respite care becomes a vital service…a necessity, not a luxury. Parents of course, are clearly the experts about the need and importance of respite care. Just as families differ, so will the necessity for respite care. Basically, however, all families require some relaxation, revitalization, and the security of knowing that their children are safe and well cared for. The most difficult problem for a family with a child with a special need is finding the quality of care and expertise the child needs.
Emily Harrop our resident Expert and Consultants in Paediatric Palliative Care comments:
‘Although it may feel very difficult to trust anyone else to care for your vulnerable child, respite is important for the families of children with chronic complex health needs. Children’s hospices, and other respite centres can never replace the loving care of a parent, but can offer good quality, safe care, that it more than good enough to allow you a break. Taking a break will not only support your own physical and emotional health, but will also allow you to be an even better carer for your child and his / her siblings. Leaving your vulnerable child in respite can also allow special time for parents to spend with siblings who may feel the loss of 1:1 time with their mum & dad. Some services will be able to accommodate you all, as a family, which may allow you a break from being a carer, but still allow you simply to be mum or dad’.
Most children’s hospices have access to doctors and nurses with expertise in pain assessment and symptom management. A referral to a children’s hospice may therefore help with symptom assessment, as well as providing some useful respite.’
Details of the nearest service can be found on the Together for Short Lives website. http://www.togetherforshortlives.org.uk/