Over the past three weeks, we have discussed some of the invisible symptoms that are associated with Multiple Sclerosis (MS). Challenges that people with MS may be facing every day, but others aren’t aware of. Awareness of these invisible symptoms is especially critical for caregivers.
We focused on depression and cognition, but other invisible symptoms can have a significant impact on daily activities and quality of life. Symptoms like pain, visual disturbances, fatigue, and bladder dysfunction might go unnoticed by friends and family, and it is extremely important for caregivers to have awareness and knowledge of them.
The simple fact is when invisible symptoms are addressed, it can truly make a difference.
Stepping In
When MS impacts a person’s ability to manage independently, someone may need to step in to help. That someone can be a spouse, partner, an adult child, parent, sibling, or even a close friend.
The key to being a good helper is knowing what the person needs and invisible symptoms can pose a challenge to understanding those needs. Symptoms can even change day to day, creating more confusion about the appropriate types and levels of support.
Two Way Communication Is Vital
Bob’s* wife, Paula, has MS and he has been her primary caregiver for more than 20 years. Paula has used a wheelchair for 15 years and most days Bob feels confident helping her dress and transfer to her chair. But when her MS symptoms flare up, Paula can have new symptoms of pain and double vision.
Bob shared that he never knows what each day will bring, and he relies on Paula to tell him how she is feeling so that he can adjust their routine. Two-way communication is important, as it makes it easier for both Bob and Paula to have a clear understanding of needs and expectations.
Caregivers Taking Care Of Themselves
It is important to remember that the caregiver must take care of their own physical and emotional health too. The risk of caregiver burnout can be very real, but there are steps to help avoid or reduce it.
Seeking emotional support and arranging for additional help can allow the caregiver to focus on their needs and remain a strong support for the person with MS.
The National Family Caregivers Association and www.Caregiver.com are organizations that focus on supporting the caregiver. The National MS Society also offers information and resources for caregivers. You can view these materials at National MS Society Caregiver Resources Page or call the Society’s information and resource line at 800-344-4867.
Please join us next week as we review some helpful resources for living with MS.
*Names have been changed.
