1. You are not alone, join a community.
There are approximately 625 out of every 100,000 suffering from some form of neurological condition. Several organizations now exist to provide support for families of those suffering from neurodegenerative disease such as https://www.parkinsons.org.uk/ (Parkinson’s disease), https://www.mndassociation.org/ (motor neurone disease), https://www.hda.org.uk/ (Huntington’s disease) and many others. These organisations also have active online communities or people that you can learn from, who will give you advice and who will support you. Most are registered charities and are actively involved in funding research to improve diagnosis, treatment and support in each condition.
2. Stay informed.
Social media, particularly Twitter is a good tool to help you stay updated on the latest innovations. Evidence-based research into neurodegenerative diseases is constantly emerging. Accessing this could help you to better support your loved one. Talking to family members of those who have the same condition as your family member is valuable too. The websites listed above can help connect you to any appropriate groups.
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3. Your family member wants to enjoy life.
It is important to try and consider your family member who is suffering as the same person as they always were. The disease may change their physical and / or mental state but the person is still present. Clinical psychologists tend to build ‘having fun’ into most long-term interventions, regardless of the type of condition. Given that these diseases are progressive, it is extra important to enjoy time together and treat each day as a gift.
4. Look after yourself too.
Caring for someone with a neurodegenerative disease is a hugely stressful task. You did not choose it, nor did they. It is okay to have days where you are sad, angry, resentful or anything else for that matter. Consider simple stress management strategies such as mindfulness meditation. There are plenty of resources on YouTube. Alongside this, it is important to take care of the basics such as scheduling time away from the family, exercise, diet and sleep. If you can arrange respite care either from a friend or relative or a professional.
5. Stay resilient.
A good coping strategy will have some method of acceptance and resilience within it. For example, you may want to develop a motto that you repeat daily or write a phrase and keep it in full view such as this famous quote:
“Life doesn’t get easier or more forgiving, we get stronger and more resilient”-Dr Steve Maraboli
Remind yourself and your loved one of the strength you possess to keep going!
If you enjoyed this blog, why not read: https://www.helpd.co.uk/blog/my-mum-cant-bear-the-idea-of-a-care-home-but-whats-the-alternative/