They have been called the forgotten caregivers, adults who have a sibling who lives with a disability. For them, thoughts about the future can feel impossible to avoid. They often appear quietly, during everyday moments while helping a parent with paperwork, attending a family gathering, or making plans.
For many adults who have a sibling who lives with a disability, thoughts about the future can feel difficult to avoid. They often arise during moments while helping a family member with personal care, visiting neighbours, or day-to-day celebrations.
It’s only natural that questions begin to surface about where a sibling will live one day, what support they will need and who will take the main responsibility for ongoing care and support. However, many older parents, brothers and sisters struggle to discuss possibilities, options and the types of plans that need to
be put in place.
Conversations about a sibling’s long-term needs often spark sensitivities. After all, discussions about aging, sickness, family dynamics, finances or loss can be awkward—especially when there are different perspectives and situations to be considered. As a result, important discussions are often postponed until a crisis forces them to happen.
The reality is that future planning is, according to those who have made successful transitions, not a single conversation. It’s a process. Starting early allows everyone to share their hopes, concerns, and expectations before major decisions need to be made. It is an ongoing dialogue that evolves and, whenever possible, should include the person who is being cared for.
Getting started
Before approaching your family, it can help to spend some time discussing options with trusted health professionals and reflecting on who should be involved, what should prompt the conversation and what options there might be.
Perhaps there are worries about what will happen when your parents can no longer provide the same level of support. Maybe you’re unsure what responsibilities may eventually fall to you, or you’re simply looking for reassurance that a plan exists. Taking time to identify your personal concerns can help you communicate them more clearly when the broader conversation involving others begins. The “future” is a huge topic, so narrowing it down makes it easier to approach. You don’t need to have everything thought out, but a sense of direction and timing can be helpful. Think about:
• Do we have resources for private care or will we rely on public supports?
• Who will help with daily support if my parents can’t? Where will my sibling live?
• What role do I actually see myself playing—if at all and who else can be counted on?
The right timing
It is important to acknowledge the emotions that may come with these family discussions. Some family members will be more involved than others. They’ll range from anxiety and uncertainty to disagreements, frustration, and even grief. These feelings are normal, and recognizing them beforehand can help.
When the time comes to talk, there is no perfect moment. Some families find it easier to work with a professional in a more formal meeting. Others prefer to introduce the topic gradually, weaving small questions into everyday conversations. Many try to set up a dedicated time to discuss plans and priorities. Any of these approaches can be effective. What matters most is creating opportunities for the conversation to continue over time rather than expecting every answer to emerge at once.
Choose a setting carefully
The place where your conversation takes place shouldn’t add pressure. Selecting a calm, comfortable environment often encourages a more open dialogue than a rushed conversation squeezed between other commitments. Whether it’s around the kitchen table, during a walk, or over coffee at a nearby cafe, choosing a space where everyone feels at ease can help reduce tension and make difficult topics feel more approachable.
Including a sibling
As these conversations occur, one voice should never be overlooked: your sibling’s. While family members may naturally focus on practical concerns such as housing, finances, or support needs, it is important to remember that these plans directly affect the life of the sibling you care about.
Whenever possible, take a person-centred approach. Find ways to give the individual opportunities to express their goals, preferences, and concerns. Future planning is most meaningful when it reflects not only what the family thinks is best, but also what the individual wants for themselves.
A listening ear
Just as important as speaking, listening carefully makes a difference. Family members may have been carrying their own fears and uncertainties for some time, and their perspectives may differ from yours. Rather than focusing solely on what you want to say, try to understand and hear where others are coming from. Listening without interrupting, asking questions, and clarifying what you’ve heard can help everyone feel respected and understood, even when opinions do not align.
Taking it one step at a time
One of the most common traps when having these kinds of conversations is trying to cover everything: housing, money, care, legal plans, all in a single conversation. This often doesn’t end well. A better approach is to try a series of smaller talks or break the group up into separate discussions if there is resistance. Some topics maybe easier to resolve given the available choices; others more difficult. One day it might be about living arrangements. Another time, finances. Another time, after doing some research, a discussion about what support might look like day-to-day—what can be continued and what might have to change. Breaking it down makes it feel less overwhelming and gives people time to think and process in between talks.
Expect disagreements
Disagreement is normal in families, especially when roles, responsibility, and emotion are involved. Accept that some people may not want the responsibility or may not want to be involved in decision-making. The goal is not to avoid conflict but to manage it. When things get tense, remember, the shared goal is your sibling’s well-being. Try to:
• Slow the conversation down and stay calm. Take breaks.
• Be realistic. Do your research and be practical before you suggest option.
• Invite professional support—legal, financial or social work.
• Consider short-and long-term medical needs as well as daily living supports.
Again, if conversations repeatedly stall or become too difficult, involving a neutral third party like a counsellor or facilitator who has been down this route with other families can help get things resolved.
Reflect on your conversations
Keep notes and try to stay organized. Reflecting on what has transpired can help you identify what needs to be done, prepare for future discussions, and recognize the progress your family has already made.
Even if the conversation felt difficult or didn’t go exactly as planned, every discussion contributes to building a stronger shared understanding of the possibilities and options for next steps.
Arzo Baig is an Editorial Assistant at the Canadian Abilities Foundation.
Photo: Curated Lifestyle and iStock.
