The more assistance and support you have, the better. There are so many needs that arise along the way, that having people with different abilities and availability is really helpful. Consider what is most important for you to do and where others can help. Taking a team approach will relieve the burden of anyone needing to do everything and will ensure good care.
• Trust your instincts. You know yourself and your situation best. Many people will offer advice, but you will know which makes the most sense.
• Give yourself permission to practice, make mistakes and try again. No one is prepared for challenges. Experiment with new approaches; if it does not work, try something else.
• Ask people to help. Family, friends and colleagues may not know how they can help unless you tell them. When someone offers you help, say “yes.”
• Make a list of what needs to be done and match people to tasks according to their skills, interests and availability. Consider which tasks you like to do and which are the most laborious. Some things to consider include: managing medical appointments, caring for children or teens and driving them to activities; preparing meals; household maintenance; finances and paperwork; and companionship.
• Develop a broad support system. Having a neurological impairment does not just affect the person with the ailment, but impacts everyone around them. Each person in the family will have different needs and ways of coping.
• Join a support group. Other caregivers can be a lifeline;
they understand that your questions, daily challenges and concerns differ from those of people with disabilities.
• Find support that fits your needs. Face-to-face groups, online support, groups that meet by phone and individual connections to other caregivers in your area are all options. Do not stop looking until you find what you need.
• Respite can be a life-saver. Schedule regular activities by yourself or with friends purely for your own relaxation or enjoyment. It is important.
• Invest in those who listen and try to understand. Not everyone responds to a profound change as you would hope or expect. Some people you think you can count on will disappoint you. Acknowledge your disappointment and focus on those who are there for you.
• Nurture your spirit. Your faith community may be an important source of understanding and assistance.