PART 3: Day-To-Day Living
Living at Home
Assistive-care facilities are meant to provide a higher level of care than some individuals with disabilities can receive at home. However, Dr. Weigel says that some of the assistive-care facilities she has seen may not be appropriate for younger people. “In such instances, the level of activity and social interaction isn’t the same as it is for elderly people. This can cause depression and social isolation.” For this reason, she recommends taking the steps needed to allow a loved one to live at home longer. These steps include ensuring that the appropriate level of care may be given and that the home-living situation is as safe as possible. Assistive devices, and for some, a service dog, may also be very helpful. In addition, individuals may consult their local Centers for Independent Living for more information.
Assistive Devices are Available to Help
At some point, some people with MS may benefit from using assistive devices. These can range from mobility devices, such as canes, walkers, wheelchairs, and scooters… to communication devices, which include items such as voice-activated word-processing software, ergonomic computer keyboards, and adaptive trackballs. Even everyday devices – such as reminder ringtones on cell phones – can be used as assistive technology to prompt people to perform such functions as to take their medication at the same time each day.
Learning about what items are available to help with one’s exact needs is vital. Physical and occupational therapists can be of much assistance in directing people to specific devices that can enable someone to perform activities that they might otherwise be unable to do. These can include items that not only assist with computers, communications, and a wide range of safety and mobility devices, as mentioned, but also a full array of aids for daily living, plans and products for adapting the home for greater accessibility, and more.
A great deal of information is available on the internet. Each state has an office of assistive technology, which may be able to provide a grant or loan assistance to obtain needed equipment, and possibly allow someone to try out an assistive device in advance.
Another resource is AbleData at www.abledata.com. Sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR), part of the United States Department of Education, AbleData maintains an extensive database of objective information on more than 36,000 assistive products. For each product, they provide a detailed description of the product’s functions and features, price information (when available), and contact information for the product’s manufacturer and/or distributors. Information is also given on customized products and do-it-yourself designs.
Searching through the products on this website gives browsers information on items from virtually every category that could require assistive technology and equipment. For example, individuals can easily locate information on vision and hearing devices, computers, daily living, housekeeping, recreation, environmental adaptations (home, office, and outdoor), transportation, walking, wheeled mobility, and more. If you have questions or need assistance, you may call the AbleData offices at (800) 227-0216 to speak with an information specialist who can assist you with a database search.
MSAA also provides information on walking and mobility. This may be found at mymsaa.org/about-ms/symptoms/mobility. The information includes a three-part article titled “Mobility Independence and Safety,” which includes a full section on wheeled mobility.
Adjusting to Assistive Devices that Help with Mobility, Safety, and Comfort
Dr. Weigel says it can be hard for some people with MS to give up walking unassisted and transition to using assistive devices. This transition can change one’s perception of oneself to someone who is dependent. It can also be a reminder that MS is progressing, so it can bring up feelings of sadness. However, assistive devices increase independence because they enhance safety and conserve energy.
Dr. Weigel explains, “A man with MS who used a cane fought me when I told him he should use a power chair. When he went to Disney World with his family, he used a scooter. He came back and said it changed his life, because he could keep up with his grandkids, daughter, and wife. Nobody was afraid of him falling and he didn’t get fatigued.”
Since some individuals with MS may be resistant to using an assistive device, Ms. Krawchuk emphasizes, “Make it clear to the person with MS that an assistive device won’t take away from who they are as a person. It will potentially add, since assistive devices allow a person to be more social instead of staying in the house all of the time.”
Some individuals with MS use service dogs, who are more than just pets. A service dog is trained to perform duties that specifically address the disability of the dog’s owner. Since each person experiences his or her own specific disabilities and has different needs for assistance, each dog is custom-trained for the person it will help. For instance, a dog might be taught to pick up dropped items, open and close doors, and turn on and off lights for an individual using a wheelchair. A service dog might even pull a wheelchair.
Canine Companions for Independence (CCI) in Santa Rosa, California states that a service dog can also push buttons for elevators or automatic doors, and even assist with business transactions by transferring money, receipts, and packages. CCI has regional training centers across the country. Applicants who meet all CCI requirements attend a two-week team-training course before going home with their dog.
Ms. Krawchuk states that a service animal adds a level of comfort for both the person with MS and their care partner. “The care partner feels better when leaving the person with MS at home with a service animal. Doing so helps relieve feelings of guilt and also helps alleviate fear. It provides company and a feeling of security for the person with MS. The service animal becomes part of the family.”
Creating a safe living environment for a care recipient is crucial. Therefore, after carefully evaluating the surroundings in the home, care partners should take the necessary steps to prevent any dangers that could result from accidents, fire, and other hazards.
Since fire prevention is of utmost importance, smoke detectors should be installed on each level of the house and checked regularly to assure they are working properly. Frayed electrical cords should be replaced, and electrical outlets must never be overloaded. Electrical cords should not be hidden under rugs, where they can wear down over time and cause the rug to catch fire. Care providers need to plan emergency escape routes, especially when mobility is affected. This route should be practiced with the individual with MS.
Falls and other accidents can occur as a result of some of the changes experienced with MS, and this presents extra challenges. Care partners should take preventive measures to help minimize the risk of injury for their loved one. For instance, simple changes can be made to reduce the risk of falls. Electrical cords and cables should never be placed where someone can trip over them. Wiping up spills immediately can prevent slipping. Shoes and other objects should be put away, rather than left lying on the floor. Grab bars can be installed wherever necessary, not just in the bathroom. Also lowering the water temperature can help avoid burns. Plastic cups and containers can replace glassware to prevent cuts from broken glass. Shoes and slippers should have non-skid soles and should be replaced when they start to fray or lose support.
Using stairs can be difficult and even dangerous for some people with MS. One option is to have a stair lift installed. Some individuals may need to avoid stairs altogether, which involves moving their bedroom into an existing room on the first floor of their house or possibly adding a room onto the first floor. Other options include moving to a ranch-style house or a first-floor apartment or condo.
For people who can’t afford to make big changes, care partners should be sure that stairways have sturdy railings on both sides that reach from top to bottom. At the top of stairways, small-diameter grab bars (about five inches long) should be available for people with MS to grab. These are also useful directly inside exterior doors.
Dr. Weigel emphasizes that making a house accessible can help the individual with MS to stay in his or her home as long as possible. “This can be costly, but it has such benefits. Most people want to stay in their homes. But, depending on the level of disability, they are at a greater risk for falls and complications if there isn’t the right level of care at home. So, doing everything to make a home accessible is best.”
In addition, maintaining a medication list, a first-aid kit, and a list of doctors as well as emergency numbers is important in a crisis. A working knowledge of cardiopulmonary resuscitation (CPR) can save a care recipient’s life when an emergency strikes. The American Red Cross offers CPR classes in many areas. Go to www.redcross.org to find a local class.
Knowing When to Stop Certain Activities
Care partners should always show respect to the individual being cared for and expect the same from others. Still, at some point, certain activities may have to be limited or discontinued. How does a care partner recognize when the time has come, and how should he or she handle this? Dr. Weigel says, “Approach it before a problem happens, such as a burn, dropping dinner, falling, a car accident, or getting lost while driving. If a person has more trouble with balance, then you could assume that he or she would have more problems bathing. If having trouble with arm coordination, he or she will have cooking problems.”
Dr. Weigel talks about the benefits of approaching the situation with concern rather than blame. “Instead of saying, ‘You can’t do this anymore,’ say, ‘I worry about you bathing when home alone because I love you and don’t want an accident to happen.’ Assure the person that asking for additional help won’t put an undue burden on the care partner. People often don’t ask for help because they feel like a burden.”
If an individual has cognitive or visual problems, “then they can’t drive,” says Dr. Weigel. “Honesty is the best policy. Say, ‘I’ve noticed your right foot drop is getting worse. Are you still comfortable driving? I’d be happy to drive,’ or ‘Maybe we should look into hand controls.’ Things like driving can be touchy and sometimes you need to enlist the help of a healthcare provider to discuss this with your loved one with MS.”
People with MS and their care partners often experience financial difficulties. Medical expenses combined with loss of income can wreak havoc on a family’s finances.
Phil says he and Shelley haven’t gone out to dinner in three years. “Money is an issue and we need a new car. We have bills to pay off. We owe tens of thousands of dollars for ER visits and ambulance rides. She has fallen several times and we have had to call 911.”
Shelley began receiving SSI (Supplemental Security Income) and Medicaid benefits eight years before marrying her husband. When she married, she lost all her benefits. As a woman who had spent years raising children at home, she hadn’t earned enough money to qualify for SSDI (Social Security Disability Insurance) and Medicare. “Society advocates American values with getting married, and then you are penalized. It makes no sense,” says Phil. “It caused an incredible amount of anxiety. We had to pay for all her doctor visits in full. We went through nearly all of our savings.”
Phil searched for assistive programs, which he describes as being “like a full-time job.” Shelley’s various MS medications cost up to $3,000 a month, so Phil located a patient assistance program that she qualified for. Shelley now gets her medication free of charge. Eighteen months ago, Phil found a physician outreach program for his wife that pays for primary care and referrals to specialists, but not for diagnostic tests. “We have so many unpaid bills. We can’t go to MS clinics in the area because of having no insurance. All the stress makes the MS worse.”
Dr. Franco says, “MS can threaten financial, emotional, and time resources. If this occurs, heightened stress as well as vulnerability result, leaving both the person with MS and the care partner feeling overwhelmed, frightened, and drained, especially if other needs go unmet.”
Families facing such challenges should seek help, both financially and emotionally. In addition to local and government assistance, the Department of Housing and Urban Development (HUD), at HUD.gov, provides counseling on housing and credit issues. Readers may also contact an MSAA Client Services Specialist at (800) 532-7667.
Independence and Dignity
Providing care for a person with MS, while allowing the individual to retain his or her independence and dignity, can be a juggling act for care partners. For instance, a care partner may wonder how to assist his or her loved one with dressing, bathing, and bathroom time while allowing for autonomy and privacy. One way to work this out is to involve the person with MS in decision-making about their capabilities.
Dr. Weigel states that discussing goals is a good way to help provide balance and include the person with MS in making decisions. “Sit down and go through a day’s activities and figure out what the person with MS can accomplish on his or her own, even if certain things take longer. Then figure out which activities the person would like to at least try before asking for help. Safety has to be considered first, of course.”
Phil realizes that his wife fears losing her self-sufficiency, so he does everything with this in mind. “I don’t want her to lose herself, so I try to balance helping her and letting her do what she can do. Those two things sometimes clash. Also, I find that validating my wife is important to maintaining her dignity. Saying positive things about her and the things she can do helps to boost dignity.”
Diana’s daughter Jennifer assists her mother with those things she truly cannot do on her own – such as driving and transferring in and out of her power chair – while ensuring that her mother does the rest. When she takes her mother out after physical therapy, her mother chooses where to eat, orders her meal, and feeds herself. After eating, Diana decides where she wants to go. “If we visit the mall, she decides which stores to stop in, and she makes her own purchases. This way, she retains as much independence as possible.”
Diana’s children regularly acknowledge the things Diana does for her family. Jennifer frequently thanks her mother for being the family’s spiritual leader who prays for them, advises them, and teaches them about faith. Her sister Christina consistently acknowledges the emotional and verbal support their mother gives to family members and how she cheers on her grandchildren for their accomplishments.
Enjoying Life Together
Having fun as an individual, a couple, or a family can take some resourcefulness when MS is involved. Often, a reduction in outside activities is necessary to accommodate a person’s health. Sometimes, old activities can be adapted, but other times, finding or creating new activities is necessary.
Dr. Franco emphasizes focusing on activities the individual can do, including volunteer work. “The important thing is to do something you like that keeps you connected to others in a meaningful way.”
She also notes the value of associating with others online. “The internet offers a new array of connection for many. Facebook, MS blogs, support groups, and forums are all easily available.”
Dr. Weigel urges individuals with MS and their care partners to socialize, regardless of logistical challenges. “Spending time with friends and family and being part of a spiritual community are ways to help prevent social isolation.”
Ms. Krawchuk states that creativity is key to wellbeing and having fun together. “I realize how challenging all of this is. But, the more creative you are, the more you can succeed in finding hope and joy. Look for things in common beyond the illness that you like and can do together. It could be movie nights, game nights, wheelchair dance parties, binge-watching your favorite show, or cooking, to name just a few examples.”
Diana’s daughter Jennifer found a new way to have fun with her mother. “It dawned on me that she can’t dance anymore. She loves dancing and is the one who taught me to dance. So, I picked her up from her wheelchair and danced with her. She loved it! When we get home from shopping now, I put on music and we dance together. I lift her from her chair and hold her up, and we dance.”
Diana’s family ensures that she is able to be at most major family events, no matter what they must do to accomplish that. Sometimes, the event comes to Diana. The family annual New Year’s Eve party used to be held at various family members’ homes. The party is now always held at Diana’s house, with everyone pitching in to ready Diana and her home, and to provide whatever is needed for the party. “It takes time to do these things, but we do it for her quality of life and so that we and our kids get to spend quality time with her,” says her daughter Christina.
Despite the financial and socialization challenges the Sissers face, Phil states, “Shelley is as devoted to me as I am to her, regardless of anything that comes our way. MS has allowed us to express our love in new and different ways. That is the sustaining force for me.”
Ms. Krawchuk notes, “Actively seeking out big and small moments of joy, hope, and laughter is so important. These moments may look different than they used to, but they are still there.”