This week, Real World Health Care closes our observance of MS Awareness Month by highlighting the Multiple Sclerosis Association of America (MSAA) and the full circle of support it offers to patients and their care partners. We spoke with Angel Blair, MA, client services specialist, who stressed the importance of understanding that while MS has a big impact on patients, it also impacts the patient’s entire family.
Physical and Emotional Support for MS Patients
Real World Health Care: What are some of the biggest challenges facing family care partners of people with MS?
Angel Blair: Family care partners often need to address a variety of challenges, from helping their loved one with activities of daily living such as cooking and bathing, to managing care decisions and financial issues, to making modifications within the home, such as adding entrance ramps, stair lifts or roll-in showers. If their loved one has mobility issues, they may need to help them with moving from one place to another – such as physically transferring them into and out of a wheelchair or driving them to appointments.
Many care partners faced with these challenges find that time management becomes a big issue, especially if they are working outside of the home. They also tend to neglect their own physical and emotional well-being, which is pushed aside to focus on their loved one.
These stresses of providing physical and emotional support to their loved one become acute when the care partner is the sole caregiver, with nobody else to rely upon. That is why care partners must seek out additional resources for help. Seeking help should not be seen as a sign of weakness, but rather a sign of strength.
RWHC: How can MSAA help care partners get the support they need?
AB: Our bi-annual magazine, The Motivator, regularly addresses topics for care partners. We host a number of educational programs around the country for patients and their care partners. Our web site contains on-demand videos and webinars as well as our MS Conversations blog. Plus, we have a number of ways people can access live help from an MSAA client service specialist: through our toll-free Helpline (800-532-7667, extension 154), a dedicated email address for MS-related questions, and online MS chat feature.
Through these various touchpoints, we can help care partners find resources and assistance in their local communities, whether that be financial assistance programs, respite care services, home care waiver programs, assistive equipment services, support groups or counseling services.
We also help to connect care partners with others who are experiencing similar issues through our online My MSAA Community forum, a peer-to-peer online forum for individuals with MS, their families and their care partners to share information and their experiences in a friendly, supportive and safe community.
MS Awareness Month
RWHC: Have you been doing anything special for care partners during MS Awareness Month?
AB: Yes. This year we are particularly focused on the theme of “MS and the Family” and have highlighted issues of particular interest to care partners, with webinars, podcasts, and “Ask Me Anything” online events. For those who may have missed the live events, everything is archived on our MS Awareness Month web site.
RWHC: How do caregiver challenges change when the loved one’s disease course progresses, for example to Secondary Progressive MS?
AB: In many cases, it’s an issue of the same challenges, just more of them. When MS progresses, it’s important for care partners to work with their loved ones and their health care team to re-assess the current level of at-home care and determine if it is appropriate. Their loved one may need more assistive equipment or additional home modifications if their mobility decreases, for example.
Discuss issues openly and honestly. Are cognitive problems increasing? Can the loved one be left alone for extended periods of time? Can the care partner physically help to move their loved one in and out of bed, in and out of the bath, and in and out of the car? Answers to these questions will help the loved one and their care partner decide if additional assistance is needed.
MS progression also may require additional medications and therapy services and involve more paperwork and financial commitments. The cost of these additional treatments, coupled with the cost of nursing or home care and additional respite services for the care partner, often lead to stress for all parties.
Stepping in to Care for an MS Patient
RWHC: What are some of the signs that it is an appropriate time for a family member or loved one to step in and become an active care partner for someone with MS?
AB: MS affects every patient and family in a unique way, so there is no one universal “sign.” However, care partners should pay close attention to their loved one’s behavior. If they become particularly depressed, agitated or forgetful, it may be an appropriate time for the family to step in. If they start to have trouble caring for themselves or their home, they may need assistance. If their symptoms result in balance or mobility issues and they start to have accidents, that’s another indication.
It’s crucial at these early stages for the patient to be directly involved in decisions around family caregiving. They should provide input on how they’re feeling, ask questions, and be clear about the level of independence they’re comfortable with. Many people with MS find it’s helpful to focus on the things they can do rather than the things they can’t do. Some even look at it as an opportunity to learn or try new things or pursue new activities or hobbies.
Care partners must remember to not push if their loved one doesn’t accept help right away. Instead, meet their loved one where they are in the moment, letting them know that help is available when, where and how they need it.
The Multiple Sclerosis Association of America (MSAA) is a national, nonprofit organization founded in 1970. It is dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners. For more information, visit https://mymsaa.org.