Caregiving: Task Masters
Caregiving products for daily living
Rolling out of bed and starting the day isn’t effortless for many individuals with neuromuscular disease. But a caregiver’s assistance paired with the right equipment makes daily tasks like toileting, showering, dressing and
“The proper equipment helps reduce fatigue because it decreases the energy required for a routine task,” says Teri Krassen, an occupational therapist at the MDA Care Center at Good Shepherd Rehabilitation Hospital in Allentown, Pa.
Health care professionals at MDA Care Centers can provide guidance in selecting products, train clients and their caregivers to use them, and give advice on individual issues or answer questions. According to Krassen, the best products help an individual and their caregiver find a balance between how much they can do independently and the amount of support needed from the caregiver. Some products allow individuals to be more self-sufficient, which can boost self-confidence and promote better relationships with caregivers. Other products help caregivers provide crucial assistance more quickly or with less physical strain.
Krassen recommends periodically re-evaluating how you approach routine tasks, as the balance may shift as one’s disease progresses, as the individual ages and when there is a change to the individual’s environment.
For adults, “using the toilet is a huge concern,” says Krassen. “The toilet height that is standard for the Americans with Disabilities Act (ADA) is not really high enough to help most people [living with a neuromuscular disease].” She frequently recommends the addition of a three-in-one commode, which adjusts to a comfortable height the same way a walker does. (For example, see the Folding Commode.)
Some of Krassen’s clients like using the Power Toilet Aid by Stand Aid of Iowa. The device mechanically lowers and raises a toilet seat over the existing toilet, saving an individual or their caregiver additional effort in getting the individual on and off the toilet.
Individuals who use wheelchairs and need to bridge the gap from their chair to a bed, toilet or shower seat may find a transfer board (also called a sliding board) helpful. Transfer boards come in all shapes and sizes and can be used independently or with assistance from a caregiver.
Mounting a long-reach handheld shower head allows an individual to shower from a seated position. A sturdy shower chair is paramount. The Nuprodx Multichair comes in a range of styles for adults and children. The versatile chair is designed for placement in a shower or tub and over a toilet, and it can be disassembled and packed compactly for traveling.
When you look good, you feel good. But dressing independently can be difficult for individuals with low dexterity and those who dress while seated in a wheelchair. The Button Aid and Zipper Pull is an easy-to-hold tool that helps individuals fasten and unfasten their own clothing. Another option is to invest in adaptive clothing that replaces standard closures with Velcro or is specifically designed for people who use wheelchairs. (For options, read Fashion Forward.) This type of clothing can be useful for independent dressers, as well as caregivers.
In the rush of morning activities, it is often easier for parents to dress their children. Emilie Lam, an occupational therapist at the MDA Care Center at Children’s Medical Center of Dallas, advises parents to practice dressing skills with youngsters after an evening bath or on weekends, when the pace is slower.
Eating with ease
Occupational therapists generally know a few no- or low-cost tricks to promote independent eating. One favorite is sliding foam tubing on utensils for a better grip. (This can be used on pencils, toothbrushes and other items, too.) Medical supply distributors sell tubing made for this purpose, but Lam recommends purchasing inexpensive foam pipe insulation from your local hardware store and cutting it to size.
Another trick for those who have shoulder weakness or difficulty lifting their arms, is propping the arms on stacks of books. This allows the individual to use the muscles from the elbows down to lift food to their mouth.
Specially designed utensils and dishes can make dining more pleasant. The Ergo 3D by Eurodib is a silicone spoon that twists into any position to aid self-feeding or feeding by a caregiver. Some may choose to invest in Obi, a portable robotic-armed device that allows individuals without use of their arms to feed themselves.
Where to Shop
Caregiving products are sold through medical distributors, as well as conventional retailers. “Amazon has almost everything,” says Lam. In addition, online retailer Zappos recently added a special section for adaptive clothing.
Sometimes, people aren’t aware of a product that can make their life easier until they do a little online research or consult with the health care professionals on their MDA Care Center team. And with more retail options, Lam believes that comparison shopping is easier than ever.
Barbara Twardowski has Charcot-Marie-Tooth disease (CMT) and uses a power wheelchair. Jim, her husband, is a registered nurse. The couple lives in Louisiana and writes about accessible travel, health and lifestyle, and related issues.
Apps for Caregivers
Your smartphone isn’t just good for texting and taking pictures. It also can help you manage caregiving tasks on the go.
CareZone allows the user to record physicians’ instructions, track medications and organize health care records. You also can invite family and friends to view information and participate in caregiving tasks. Free for iPhone and Android.
First Aid by the American Red Cross has step-by-step instructions and videos on handling common emergencies, such as choking, broken bones and burns. It also includes disaster preparedness information and can connect you to 911. Free for iPhone and Android.
Medisafe provides medication tracking, reminders and educational information. It is even possible to connect with physicians through the app. Free for iPhone and Android.
Symple is designed for tracking symptoms over time, such as pain, anxiety, fatigue or sleeplessness. You can create reports to share with health care professionals at your local MDA Care Center. Free for iPhone.
MDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.Request Information