Respite

Caring for someone with a leukodystrophy can be stressful and can put a strain on other family relationships, even if care support within the home has been arranged. Respite care provides some relief for this, but often comes with feelings of guilt and failure. Arranging respite care does not mean that you cannot or do not want to look after your loved one. This can be important to your mental health as a carer and family member: in order to provide the best possible care and loving home life for your loved one, you need to make sure you are getting the support that you need and are able to look after yourself. It is possible that you will have an allocated number of nights’ respite included in your care package. Alex TLC can help with this, discussing whether respite care will work for you and helping to find appropriate services.