It also has no cure, so as symptoms progress over someone’s lifetime—often causing complete loss of mobility—there’s an ever-present need for a caregiver.
Caregivers can range from family, friends, rehab specialists, hired professionals, to a medical team and provide relief with many of the daily activities that would cause emotional and physical strain.
It’s hard to predict what kind of help someone will need, especially right after a diagnosis, but preparing for what’s potentially to come will eliminate the stress of scrambling to find an appropriate caregiver as new symptoms surface.
To get started, here are the most common ways that caregivers help at home:
Before the diagnosis, daily household chores were mindless and for the most part, required limited physical strain. As symptoms progress, tasks like doing laundry, washing dishes, getting the mail and vacuuming can become painful and tiresome. For more advanced cases, completing these tasks may be impossible.
Making a list of household chores is helpful to figure out what needs to be accomplished and how often.
Other daily tasks include driving to social gatherings and doctor appointments, helping with childcare responsibilities, walking the dog, and grocery shopping.
Shaky hands, numbness and tingling can make personal care a great source of discomfort. But part of maintaining mental wellbeing and staying positive is keeping up with good personal hygiene. Caregivers help MS patients with morning and nighttime routines, including eating meals, bathing, using the bathroom, brushing teeth, and getting undressed and dressed.
Because some of these tasks are intimate, hiring a professional caregiver can relieve potential embarrassment.
To make these tasks easier for both caregiver and patient, create an environment that’s practical for a person with limited mobility. Sometimes, it takes only a couple modifications. Examples are a walk-in or roll-in bath and shower, or a shower chair with back support, and an elevated toilet seat with rails. A bedpan is helpful if walking from the bed to the bathroom is too much of a trek, and also, if there’s a caregiver around constantly to help with bathroom needs.
As the person with MS becomes more immobile, the caregiver will need to move or lift her from one location to another, like from the wheelchair into bed.
Assisted devices and equipment can help make this process easier, but the caregiver must be physically strong enough to manage these tasks and know how to work the equipment. An occupational therapist or physical therapist can help decide which devices are necessary to ensure an easier daily routine.
The caregiver also makes sure the patient is keeping up with a physical exercise routine, like stretching and walking to prevent stiffness, and monitoring medication intake and adverse side effects. A chart can help keep the entire caregiving team and the person with MS informed and on the same page.
The disease has no cure, so it lasts a lifetime. Without emotional support, living with a chronic and debilitating illness can be lonely and lead to depression.
The more immobile one becomes, the more difficult it can be to socialize and remain emotionally stable. A caregiver’s role is vital to staying on top of a patient’s emotional well-being—a major factor in someone’s overall wellness.
Family and friends can offer support through the diagnosis itself, progressing symptoms and flare ups.
Encouraging engagement in activities that the person with MS used to enjoy and socializing with friends, will help promote a more positive state of mind and remind individuals that they can maintain some aspects of their lifestyles that they had before diagnosis.
Coping with the chronic disease is stressful, but figuring out the financial aspects that tag along with it adds another level of complexity. Equipment, assisted devices and treatments cost money, and it can be complicated to figure out what’s covered by insurance and what bills to prioritize.
Caregivers can help organize the appropriate paperwork and with general financial planning, which will most likely involve learning to budget after the person with MS can no longer work. Financial Planning for a Life with Multiple Sclerosis explains many of the financial challenges that accompany the disease.