Restless Legs Syndrome Foundation Blog

November 22, 2019

By Amber Arellano

RLS Safety Net

Do you consider yourself a caregiver for your spouse or partner? By definition, a caregiver is a person who provides direct care to the elderly, a child, a spouse or a partner. An estimated 39.8 million caregivers in the US provide assistance to another adult age 18 and up, according to a report by AARP. The degree of caregiving varies – from 24-hour care, to asking if a spouse took their medicine that day.

Caregiving can be a source of marital or familial strain; it can cause caregiver frustration and fatigue, as well as disagreements within a household. In the RLS Foundation’s 2013 Patient Odyssey Survey, spouses/partners reported the following were impacted by RLS: relationships (20%), the ability to travel/leisure activities (25%) and sleep (24%). Here are some tips for caregivers to strengthen relationships, manage travel and leisure activities, and improve sleep.

Strengthen your relationship

According to the Patient Odyssey Survey, 45% of RLS patients wish their family and friends were more supportive and understanding of their experience with RLS.

Caregivers may feel powerless over their loved ones’ RLS if they don’t understand it. It’s important to educate yourself. Watch the Foundation webinar “What is RLS” by Dr. William Ondo, request RLS Foundation literature or download publications from the member portal at www.rls.org. Don’t be afraid to share your struggles and listen to your loved one’s experiences in return.

If you are uncomfortable broaching the topic of RLS, then make time to talk. Ask your spouse or partner to describe what RLS means to them, go on a date together, or attend a support group meeting. As social researcher Brené Brown says “Vulnerability sounds like truth and feels like courage.” Have courage, and be bold. The effects of family support, collaboration, and control of RLS will have positive health benefits for all in your household.

Travel and leisure: Be flexible and creative

Gregory Stader, whose wife Rosemary has RLS, says that their family is aware of Rosemary’s symptoms and makes a few adjustments to work together and quell her symptoms. “We have set timers using [Amazon] Alexa as a reminder to take her meds on time,” says Stader. “[For trips] we try to travel together, and when driving we allow extra time for stops if needed.” Stader says he is now driving a majority of the time, and they keep Rosemary’s mind occupied with devices – iPads and cell phones – to allow her to stay connected, read email or order products.

RLS Foundation Executive Director Karla Dzienkowski talks about traveling with her daughter who has RLS. “Flexibility is key. As a family, we make plans to travel only in the morning or afternoon hours. If it’s not a good day, we change plans,” Dzienkowski says. If someone in your family has RLS, don’t let RLS stop you from traveling and doing other things that you enjoy. Find ways to make accommodations and be flexible with travel plans. Travel at a time of the day that is best for your family member with RLS, and consider modes of travel that will allow them to move when necessary – for example, by train, boat or RV. Find ways to keep their mind busy with activities such as Sudoku, crossword puzzles or podcasts.

According to AARP, couples bond more closely when they do new, innovative activities together. Pick up your local newspaper and find a new event to attend, take a dance class, or join a club. If you have an outdoor theater or concert nearby with options to stand or even dance, take advantage of venues that allow you to move. Travel and leisure activities are out there – go find yours!

Optimize your sleep

In the Foundation’s survey, 65% of patients and 24% of spouses/partners report a restful night’s sleep as the area of their lives most affected by RLS. Encourage your loved one with RLS to be aware of their triggers, use the Foundation’s RLS symptom diary, and establish a daily schedule to prepare for a restful night. Work together, and keep your channels of communication bright and open. Go outside or do something physical for at least 30 minutes a day to also aid sleep.

Loss of sleep can have a negative effect on mood, productivity and happiness. The Global Council on Brain Health, a collaborative from AARP, recommends people age 50-plus should aim to get about seven to eight hours of sleep in a 24-hour period. If the sleep needs of the RLS patient or caregiver are not met, don’t be afraid to try sleeping apart. In the Foundation’s survey, 36% of partners reported sleeping in separate beds due to RLS. Sleeping apart can be beneficial for both parties; the caregiver can get a full night’s rest, and the RLS patient will be less distressed throughout the night.

Caregivers, remember to be positive, patient and understanding when your loved one is experiencing severe RLS symptoms. Know that your loved one appreciates all that you do for them; you are their safety net when things get tough. As a community, patients, caregivers, families and friends can make a difference in each other’s lives. You are not alone!