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Once you and your loved one’ s advance directives are in place, share these documents with your respective medical teams and health care proxies. Keep a copy for yourselves as well: consider creating a physical binder or digital folder containing your advance directives in a place that’ s easy to access.
Our guide to future care planning, Looking Ahead with Parkinson’ s, can help you navigate these conversations. Visit michaeljfox. org / lookingahead for more. Additional later and end-of-life care planning resources are available in the Resources section.
Exploring Options for Additional Help
For some— not all— care partners and families, there may come a time when Parkinson’ s requires more than you can safely give on your own or in your own home. Recognizing this need can be difficult and emotional for both you and your loved one. There may be resistance to change, discomfort with getting care from new or different people or a desire to stay in one’ s own home— no matter what. Many care partners feel guilty, as though they are not living up to vows of“ in sickness and in health” or keeping promises to never put their loved one in a home.
Deciding You Need More Help
As you think about whether your loved one needs more or different care and what that might look like, consider:
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Melissa: I don’ t really think about disease progression. It’ s a scary thing, so I put a big rock on those feelings. I only occasionally look underneath. Living in worry doesn’ t help.
Symptoms and severity. Does Parkinson’ s significantly affect your loved one’ s ability to perform everyday tasks? Do they need 24 / 7 care and supervision? Are stairs hard to climb? Does the current home and setup work? Will it accommodate changing abilities and needs as the disease progresses?
Safety. Do symptoms impact safety for you or your loved one? Do they risk injury from falls? Do you risk hurting yourself when helping them up from falls, or when assisting with tasks like showering or moving in and out of bed? Do cognitive changes or hallucinations increase safety risks, like forgetting to turn off the stove or wandering from home? Table of Contents