How to Design a Fulfilling Life at Home After Leaving Work Because of Huntington’s Disease

Leaving work because Huntington’s disease (HD) has made your job too difficult can change much more than your schedule. You may miss the role you had, the people you saw every day, the rhythm of getting up and going somewhere, or simply the feeling that others were counting on you.

The transition away from your job is bigger than just changes to your daily routine; your self-esteem, sense of purpose, and your connections to other people may all be impacted, says Amy Lemke, PhD, a licensed independent social worker and clinical assistant professor with the Huntington’s Disease Center of Excellence at University of Iowa Health Care in Iowa City.

That adjustment can take time. Rather than trying to fill every hour or recreate a workday at home, the goal is to gradually build a routine around activities and relationships that still feel meaningful and manageable.

Some predictability can help. Because Huntington’s disease can make it harder to start, organize, and move from one activity to the next, a routine with room for purpose, enjoyment, rest, and connection can give shape to your day without putting too much pressure on you.

You may miss different parts of your job for different reasons. Maybe you liked solving problems, making something, helping people, being part of a team, or knowing that there was somewhere you needed to be every morning.

Identifying what mattered most can help you find other ways to bring some of it into your life, says Dr. Lemke.

She suggests asking yourself:

• What did I love about work?
• What was I good at?
• Who benefited from what I did?
• Where could I find a smaller version of that experience now?

The word “smaller” is important, says Lemke. “The goal is not to recreate a previous level of functioning or productivity, but rather to find an outlet that preserves a sense of identity and connects the person with their values.”

For example, someone who valued creativity might find that outlet through drawing, coloring, crafts, or another creative activity adapted to their abilities.

Depending on your symptoms, you may consider staying productive by taking on volunteer or paid work at a different level or position that fits with your current capabilities, says Deb Kegelmeyer, DPT, professor emeritus of clinical health and rehabilitation sciences at The Ohio State University in Columbus and a coauthor of the international physiotherapy guidelines for Huntington’s disease.

“Others find it anxiety-producing to work and [instead] maintain their sense of productivity through family duties or community service activities,” she says.

Having difficulty getting started doesn’t necessarily mean that the activity isn’t meaningful to you. “One important step is identifying self-critical narratives such as, ‘I should be accomplishing more,’” says Lemke. HD-related apathy may be contributing to your difficulty getting started, she adds.

“Daily schedules take away the stress of planning and organizing, and the repetition day to day provides a sense of security,” Kegelmeyer says. The amount of structure that works best varies from person to person and may change as HD progresses, she says.

When designing your routine, consider your usual energy patterns and build in meals, movement, and rest throughout the day.

“For many people, it is more helpful to establish broad anchors, such as morning, midday, afternoon, and evening,” Kegelmeyer says. An anchor can also connect one activity to another, such as routinely exercising after lunch. The exact time can change, but lunch becomes a familiar cue for what happens next, says Kegelmeyer.

To leave room for days when your symptoms or energy are different, Lemke suggests thinking in three categories:

• Things You Do Every Day These include basic routines such as meals, self-care, movement, and rest.
• Things for a Higher-Energy Day These might be activities like going for a walk, doing a hobby, running an errand, or visiting with someone.
• Things for a Difficult Day These could include shorter periods of movement, making a phone call, doing a simple hobby, or getting additional rest.

“It can also be helpful to identify one small activity each day that brings joy or a sense of purpose and schedule it during your best energy window,” says Lemke.

Kegelmeyer and Lemke say that signs a routine or activity level may be too demanding include:

• Marked fatigue or unintentional weight loss
• Increased anxiety, irritability, or angry outbursts
• Worsening chorea or more confusion
• Withdrawal or other negative behavior during or after an activity

If these changes show up, Kegelmeyer recommends adjusting, shortening, or replacing the activity.

“Signs that there may be too little activity include increasing social withdrawal, boredom, reduced physical activity, or greater dependence on others for activities the person can still perform independently,” says Lemke.

Occupational therapy home evaluations can be particularly valuable, as they allow a rehabilitation professional to assess your abilities in the actual environment where challenges are occurring, says Lemke.

“A therapist can evaluate both the home and how activities are being performed and suggest ways to maintain safety and independence,” she says.

The overarching goal of modifying your home is to reduce the amount of remembering, searching, and sequencing you need to do, says Lemke. The easier it is to find what you need and move through an activity, the more energy and attention you can devote to the activity itself.

Strategies that may help include:

• Cut down on clutter. “I really encourage people to decrease clutter — it is stressful and leads to falls,” Kegelmeyer says.
• Use simple visual cues. Kegelmeyer recommends familiar, easy-to-see signs or reminders, rather than complicated instructions, noting that HD can also affect vision. For example, you may want to put a brief reminder note directly on your walker to cue the steps involved in sitting down safely.
• Label or color-code when useful. Large-print words or pictures on drawers and cabinets can make items easier to find, while color-coded bins or colored tape can identify supplies or important controls on electronic devices, says Lemke.
• Give activities a familiar place. Keeping hobby supplies or other frequently used items together in a designated area can reduce searching and make it easier to get started, says Kegelmeyer.
• Break down multistep activities. Lemke recommends using checklists when remembering the sequence of a task becomes difficult.

“Changes are more likely to help preserve independence when the person with HD is part of the process,” says Lemke.

You don’t need a packed calendar to stay connected once you leave work.

“For someone with HD, small, predictable social contacts are often more manageable than crowded events or an overly full social calendar,” Lemke says. A weekly coffee, standing phone call, regular video chat, or HD support group can provide connection with less planning and cognitive effort, she says.

Former coworkers and other friends can remain part of that routine. “If family, work friends, and other friends can work together to schedule visits and activities, then the burden on any one person is minimized,” Kegelmeyer says.

Friends may also need some help with understanding the changes they notice. “Any education that can be provided to friends will help them understand the personality and cognitive changes and feel more comfortable staying connected,” Kegelmeyer says.

“Sometimes a short, consistent interaction can be much more meaningful and sustainable than an occasional large gathering,” Lemke says.

It’s also important to try to separate what you want for yourself from what others expect from you.

Apathy in HD isn’t the same as depression or simply losing interest in life. It can result from changes in the brain that affect motivation and the ability to get started on goals or activities, Lemke says.

“A person with apathy may recognize that they’re doing less than they used to but not necessarily feel sad, distressed, or bothered by it in the way someone with depression might,” she says.

That distinction can be important for families too. Loved ones may unintentionally put pressure on someone to “do more,” when what’s needed instead is a realistic conversation about what feels manageable and meaningful, says Lemke.

Your life does not have to remain productive to remain meaningful, she says: “The goal is not to replace employment with another set of performance expectations, but to identify activities and relationships that provide connection, enjoyment, identity, or purpose.”