Are you caring for someone with muscular dystrophy (MD)?
Caregiving is challenging work that affects the entire family’s lifestyle. It is not unusual to feel overwhelmed at least some of the time. You may be vulnerable to anxiety, depression, isolation, exhaustion, stress and stress-related illness. It is vital that you protect your physical and emotional health; you won’t be able to look after your dependant unless you look after yourself first.
Some suggestions that may help you find that balance:
• Encourage independence. If the person you are caring for does things for themselves as far as possible, it will improve their quality of life and self-image, and you will have more freedom. They can participate in activities like special sports, play groups, crafts and music. Let children do some chores, and accustom them to dealing with healthcare professionals and outside carers.
• Take respite time. Do not neglect your own work, social life and interests. “Respite time” is for caregivers to see to their own needs, away from their caring responsibilities.
• Use teamwork. Build up lists of other people who are willing to help, and tasks for them to do. Helpers might include relatives, friends or members of community or faith groups.
• Find a support group. Support groups bring people together to share problems and practical help. They can provide comfort and friendship. Good places to connect with others include:
– The Muscular Dystrophy Foundation Australia, which provides information, resources and contacts for regional Muscular Dystrophy Associations in your state or territory.
– Carers Australia, which offers support to all kinds of carers (not just for MD), including counselling and information.
• Arm yourself with information. In addition to the above two organisations, you can find a wealth of helpful information and resources for caregivers at:
– The Muscular Dystrophy Campaign, a UK-based charity.
– The Muscular Dystrophy Association, a non-profit health agency researching treatments and cures
• Acknowledge your emotions. MD affects the whole family, disrupting routines and causing emotional upheaval. You may have intense feelings – sadness, denial, anger – that you need to deal with constructively. It can help to talk to a therapist or counsellor.
• Get involved. Not everybody has the time, but getting involved in organisations that advocate for the rights of the disabled is a great way to meet people with common interests, raise funds and take positive action.