How to support someone who is planning for future care
It isn't about having all the right answers; it’s about showing up
Preparing for future care is one of the most intimate, emotional undertakings of the Huntington’s disease (HD) journey. It requires looking ahead to a time we may not feel ready to imagine, while still holding on to the life we’re living now. But no one prepares for this alone. Caregivers, partners, parents, siblings, and close friends often sit beside us during this process, offering support in ways that feel loving, respectful, and aligned with our wishes.
For caregivers, this can be a confusing and emotionally demanding role. You may want to help, but you don’t always know how. You might want to protect the person you love, but you don’t want to overstep. And you may be carrying your own fears at the same time, fears you don’t always have permission, time, or emotional space to express.
Supporting someone with HD during future care planning is not about having all the right answers. It’s about showing up with presence, patience, and a willingness to walk the path together. It’s about honoring their autonomy while also being a safe haven. And above all, it’s about holding space for both the tenderness of the present and the uncertainty of the future.
‘I can handle this conversation’
For someone living with Huntington’s, talking about future care can feel like opening a door to fears that have been quietly tucked away. The best way to support them at the beginning isn’t with solutions or detailed plans; it’s by listening.
There is a kind of healing that happens when a person can speak openly about what scares them, what matters to them, and what they hope their future care will look like. Listening is not passive. It is active presence. It is saying, “I am here, and I can handle this conversation with you.”
Future care planning can stir up complicated emotions. A person with HD may want control over their options while simultaneously grieving the very reason planning is needed. Caregivers may want to lighten the burden by stepping in, but doing too much too soon can unintentionally take power away from the person you’re trying to support.
Respecting autonomy means letting them lead whenever possible. It means giving them time to make a decision. It means not rushing choices simply because discomfort grows in the silence. And it means understanding that planning ahead is not a sign of giving up; it’s an act of self-advocacy.
Honoring someone’s voice is one of the greatest gifts a caregiver can offer.
Planning for future care is rarely completed in one sitting. It unfolds in small steps, usually with many pauses in between. Legal documents, disability benefits, long-term housing options, insurance, medical power of attorney, advance directives — these are all big topics.
For someone with HD, this can feel overwhelming. A caregiver can support by helping to break the process into smaller, more manageable pieces without letting it become the center of every conversation. Some days are good for filling out forms; others are good for simply surviving the emotional toll. Recognizing which day is which is a skill that caregivers develop over time, with patience and compassion.
Sometimes the most loving thing you can do is say, “Let’s take a break. Let’s breathe. Let’s revisit this when you feel ready.”
Caregivers often feel an instinct to soothe the pain, soften the truth, and steer the conversation in a less heavy direction. But the freedom to feel — fully and without being rushed — is essential.
Being a caregiver during this stage means allowing the person you love to cry without trying to shut down the tears. It means letting silence be a form of comfort, rather than trying to rescue the moment. Your presence alone can make the unbearable feel bearable.
One of the hardest parts of caregiving is learning when to step forward and when to step back.
But there will also be moments when the person with HD needs space to think independently, make their own decisions, or express preferences that might surprise you. Independence doesn’t disappear simply because planning begins. It may change, but it doesn’t vanish.
Supporting someone isn’t about taking control. It’s about standing beside them while they maintain as much control as they can.
Supporting someone through future care planning is emotional work. Caregivers deserve support from others, from therapy, from support groups, from friends, from respite care, and from rest. No caregiver can sustain this alone, nor should they ever feel guilty for needing help.
Supporting someone with HD as they plan for future care is not about fixing the future. It’s about holding their hand as you look toward it together.
And through that shared journey, something beautiful emerges: understanding, connection, and the quiet reassurance that neither of you is facing the future alone.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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