by Amy Natt, MS, CMC, CSA
My sister is in her early 50s; she has been diagnosed with Multiple Sclerosis and has experienced several recent falls. She lives alone, works and is still very independent so doesn’t like to talk about it or ask for help. How can I provide more support for her?
It is very difficult to accept a new diagnosis, especially if there is no known cure. The fact that your sister is younger, still working and does not have a significant other at home for support, can make it even more difficult to accept. While she may be able to lead a relatively normal life right now, it is a progressive disease and starting a conversation will help her take steps to put a plan in place for the future. Remember that what you see as resistance is probably fear. Educate yourself as much as possible, so that as changes occur you will have a basic understanding of the disease. Some of the early symptoms she may experience include:
- vision problems
- tingling and numbness
- pains and spasms
- weakness or fatigue
- balance problems or dizziness
- bladder issues
- sexual dysfunction
- cognitive problems
Balance, weakness and spasms can often lead to falls, which is a primary risk to maintaining independence. If your sister is willing to talk to you about her diagnosis, you can emphasize that you want to help her manage any symptoms, minimize the risk of getting hurt and maximize her ability to remain at home safely. Offer to attend medical appointments, just to listen and take notes. If she allows this, help her write out questions ahead of time, but be sure you don’t take over the appointment or you may not be invited back.
Because she lives alone it is important that she have some type of medical alert pendent. If she has a fall and is unable to reach her phone, she needs a way to call for help. There are several systems on the market. Some work within a certain radius of a base unit, while others have GPS functionality and can be used almost anywhere. Provide her with information on these systems and offer to be her emergency contact. Safety is a big issue; you can also offer to help her arrange her home environment to minimize things that might create fall risks, like throw rugs, clutter or cords. Adding things like grab bars and hand rails can be helpful as well. Minimizing the risk for falls can be a very important step to maintaining independence.
Information is power. The National MS Society has a variety of educational resources and ways they can offer support. You or she would start by calling and asking to speak to the MS Navigator. They can help assess the situation and offer recommendations and resources. They may be aware of local support groups she could attend. Let them become a partner in her care and be utilized at different points along this journey.
National Multiple Sclerosis Society
Phone: 781-693-5155 / 800-344-4867
Your sister is dealing with uncertainty. Keep showing up and offering to help. Be patient and a good listener and as opportunities present, offer to provide support and resources. Provide her with information and allow time for her to digest it. If she is resistant, be ready when the crisis hits to help her take the appropriate next steps. Work with her medical providers and significant people in her life to create a plan together.
Readers may send questions to Amy Natt, an Aging Life Care ProfessionalTM, certified senior advisor and CEO of Aging Outreach Services. She can be reached at firstname.lastname@example.org .