Advice on the Importance of ‘Future Planning’ for Huntington’s Families
A social worker urges you to gather information 'now' to ensure your wishes
First in a series.
My wife, Jill, who was diagnosed with Huntington’s disease (HD) in 2018, doesn’t like to think about what’s in store for her. She knows her illness will progress in cruel ways, so she prefers to live in the present moment. But recently, she decided it’s time to think about preparing for her future. As she puts it, she knows she needs to “get her ducks in a row.”
As readers of this column know, this subject has been weighing on her mind, as I recently wrote about the importance of making an advance directive. Because she wants to help HD families, she figures others should also think about how to get their ducks in a row in matters beyond just a living will.
Thinking about the future can be scary and hard. Where do you start? What’s important to know? Who should you speak to? Jill and I decided it was time to reach out to someone who knows what the ducks are and how to line them up.
Lisa Mooney, a licensed clinical social worker, works in the Department of Neurology at the University of California, Davis, a Huntington’s Disease Society of America Center of Excellence. She was part of an online support group meeting that Jill attended, and my wife found her to be impressive.
Jill thought advice from an expert would be helpful, so we reached out to Lisa by email and asked her to share some of the tips she gives to patients in her clinical practice. Lisa was so awesome that we decided to devote a two-part series to this important topic.
Jill and I have both have experienced family emergencies. Some readers may recall that three years ago, my sister was tragically and suddenly killed when a tree fell on the parked car. And Jill’s younger brother was in a coma after he was involved in a car accident. Thus, we get it. Life can be unpredictable at times, which often makes any kind of planning difficult. But as Lisa explained, that is why “future planning” is so important.
“I prefer [to call it] ‘future planning,’ [because] it encompasses anything related to preparing/planning for your future needs as you age, experience medical needs or have an accident or disability,” she said, adding that long-term care planning is part of future planning, as it includes after-death wishes, such as the division of any assets and finances.
As Jill and I can attest, thinking about how and where to start can feel overwhelming. Lisa agreed with us, saying, “Future planning/long-term care planning is overwhelming with all the tasks and questions that need to be answered.”
She reminded us that we’re human, so of course we are going to feel overwhelmed. But at a certain point, families have to set up a list of priorities to address and then, one step at a time, start to figure out what family members need in place.
“And for those of you that are impacted by HD — those with HD and those who love them — please utilize your HD care team or HD social workers to ask questions,” she said. “Fellow HD persons and their loved ones are also a great place to ask questions and find out what they have in place.”
Lisa described future and long-term planning as a process, which cannot be done in a day or even several days.
“So start gathering information now,” she said. “Explore resources; ask yourself, ‘What are your wishes?’ and then get them on paper.”
She recommended people read an online article published by AARP called “Experts Urge Earlier Planning for Long-Term Care.”
Ultimately, the biggest takeaway I got from Lisa’s answers was that planning requires planning. No matter how difficult or sad the future may be, caregivers need to figure out how to get some family members on board to ask the questions that need to be asked and to get the answers needed.
One place where Jill has decided to start is financial planning.
In the second part of this series, I’ll share more about what that entails and hope that writing about these issues inspires people to take the necessary steps to make their HD journeys less traumatic than the disease itself.
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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mai osama bakr
Is there a treatment that can be used to reduce movements for Hengton patients?
I've heard about installing a deep brain device to control movement, can this device be used for the Huntton patient?
Carlos Briceño
There are some treatments that have been approved and some that are “in the works,” meaning there are companies in various stages of clinical trials. I am not a physician, so I can’t tell you what would be the right treatment for someone, but you can read about what is happening with the treatment of HD at https://hdsa.org/?s=Movements.