It’s a question none of us like to think about, but one that is unavoidable for ageing carers who have been the primary – and often only – form of support available to their loved one living with brain injury.
Here we offer some suggestions to help you plan for the future.
1. Talk to your loved one
When thinking about future arrangements, always start off by speaking with the brain injury survivor and finding out what concerns they have. They might have fears of their own, and it is important to be able to discuss these openly.
Even if the survivor lacks capacity or has problems with information processing, involving them in these discussions as much as possible is very important. Naturally, this should be done in a way that is appropriate and sensitive to the individual so as to not instil a sense of fear.
2. Talk to close friends and family
Talking to people close to us can help with managing our thoughts and relieving emotional stress or worry. Consider talking to close friends and family about the survivor’s care in the future.
Even if you don’t have any plans in mind just yet, starting to have these discussions early on can help to make sense of what can otherwise be a difficult issue to even think about.
3. Take the discussions one step further...
If you are acting as a deputy for the survivor, meaning you are legally responsible for making decisions in their best interests, start thinking about who you would trust to act as a deputy for them in the future.
This is a big responsibility, but if there is someone who you feel would be able to take on such a role, start having this discussion with them and see how they feel about it.
Further advice can be found at www.gov.uk/become-deputy.
4. Find out what your local council can do
Your local council should offer a range of services for people who need support with living independently. This can include making adaptations to the home or giving advice on housing.
If the survivor will not be able to live independently when you are gone, start researching whether or not there are any supported living or sheltered housing facilities in your area that might provide a future option.
5. Make informal arrangements
Talk to family and friends about unofficial ways in which they can help out in the future. Consider making informal arrangements. For instance, you could ask family members and close friends to each commit to ringing or taking the survivor out one day a month.
6. Make a will
Make sure you have a will in place. Writing a will ensures that your wishes are guaranteed to be fulfilled and provisions will be left for your loved one.
Legal advice should always be sought when writing a will, particularly when leaving money to someone who is dependent.
Headway also offers a free will writing service via its Friends of Headway scheme.
7. Inform other services
If the survivor is vulnerable, inform your local social services team and police. They may be able to make arrangements to ensure the safety of your loved one, for instance if they need assistance while out and about.
You should also consider applying for one of Headway’s Brain Injury Identity Cards, which can provide invaluable help in these situations.
8. Other sources of support and advice
Your local Citizens Advice would be a good place to start when seeking general advice on making practical arrangements. You could also contact the Headway helpline for information and support on 0808 800 2244 or helpline@headway.org.uk.
You can also download our new factsheet Brain injury: A guide for parents and ageing carers using the link below.
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