Our last blog discussed issues related to future planning both for and with a person with a disability. This time we focus on adult siblings. If you are an adult sibling, you too might worry about the future, when your parents may be less able to provide caregiving for your brother/sister. These are not easy concerns to manage. There are so many variables. And, often, there can be tricky communication between parents and siblings, especially if there are leftover misunderstandings or resentments. You may have been given the message from an early age that your brother or sister would be your responsibility. Or you may find that your parents avoid giving you any responsibility and won’t talk at all about the future.
Sibling concerns:
Our closed FB group for adult siblings, SibChat, often includes questions or concerns on ‘planning for the future’ of a brother or sister with a disability, either currently or when parents are less able to provide caregiving. Also, Siblings Australia has carried out research with adult siblings over many years, including this project. (LINK to adult sib study). In a later study (link to Mapping Project), out of 106 siblings, 67% said they worry about the future.
Many siblings have talked about their experiences and their need for support, both emotionally but also to navigate the support system so they could better support their brother or sister. Most siblings care deeply about their brother or sister with a disability but also struggle with how much they should give and how they can pursue their own life goals at the same time.
You may have your own family or wonder if you should have a family of your own. Certainly, it can be difficult juggling your own family, aging parents, and your brother or sister with a disability, alongside possible employment, and other responsibilities. The so-called ‘club sandwich’ generation.
Of course, your brother or sister also needs to be included in any planning to the level they are able, with supported decision-making processes if necessary.
So, what might help?
First, as mentioned in the previous blog, it is important to understand the perspective of others in your family. Maybe ask parents more about what it has been like for them to be the parent of a child/adult with a disability, and what their hopes are for the future. Share your perspectives with each other with compassion.
Also let your parents know that you worry about the future and, if they don’t include you in discussions, it just makes you worry more. If they hesitate to discuss these issues, a letter might help break the ice. Or seek support from outside the family to assist with the discussion, e.g., Family Relationship Services, a family counsellor, or even a trusted extended family member or friend.
Connect with other siblings via SibChat or face-to-face groups (like our peer-led support groups) to share experiences and gain support. Other siblings can help to show the way.
Think about what your life goals are. And how they might fit in around what you would like to see for your brother/sister with a disability. What roles are you able/willing to play in the life of your brother/sister? Will you take more of a sibling role, or will you be more of a caregiver? Does your brother/sister want you to be their ‘carer’? Each family is complex and has its own set of challenges. If good support can be found in the community, you can enjoy your sibling connection more readily. You may still assist in practical ways, e.g., taking them to appointments, managing finances, etc., but without the full responsibility, you can more readily enjoy your ‘sibling’ relationship.
Don’t assume that parents expect you will take over the caregiving role completely. They probably hope you will be involved in the life of your brother or sister but may not wish you to forgo your own goals. You can work on developing a good life for yourself while still ensuring a good life for your brother or sister with the help of a range of supports including NDIS, Circles of Support, books/websites, and agencies like the Housing Hub and NACBO.
Suggest to parents that they set up a personal profile of your brother or sister with all their likes, dislikes, support connections, etc., Also, a document that could include their hopes for the future in terms of accommodation, employment, etc. for your brother or sister, alongside your brother or sister’s hopes too.
