By Emily Rapley
When someone you love is diagnosed with MS it feels like life will never be the same again. Yet for many people with MS and their care-partners, everyday life may not really change much especially when your partner experiences the less visible symptoms of MS like spasticity, pain and fatigue. As a care-partner, it can be difficult to acknowledge the debilitating effect of these invisible symptoms – especially at the end of a long day when everyone is tired and hungry, the house is a mess, and the kids need attention.
It is important to keep working as a team, to communicate and work with your partner to encourage them to find a balance between focusing on their health and the needs of the family. Sometimes my husband is so keen to prove that he is still “the man that he used to be” playing sports or at the gym that he preserves no energy for participating in family and everyday household activities. It took me a long time to find a way to strike this balance, but in the end, I simply asked my husband to ration his energy. “It is great that you can still play basketball but I really need you to help with dishes.” “Please save some of your energy to help me with housework, I am really tired too.” or “It is amazing that you can still jog but this week could you jog behind the lawn mower?” Care-partnering is reciprocal; your spouse may have MS but you have to care for one another.
Emily’s husband, Tim, was diagnosed with MS in 2000.
- A Guide for Caregivers
- Care for the Care Partner – Momentum article
George H. Kraft, M.D., M.S., Director, Western MS Clinical Center; Alvord Professor, University of Washington in Seattle, presents a brief overview of advanced MS, current status of research and practical application of symptom management.
Wednesday, July 18, 2012, 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: July 11
Patricia Melville, NP-C teaches the benefits of oral supplements and discuss some of the most commonly used vitamins, minerals and herbs.
Thursday, September 13, 2012, 6:30 – 7:30 p.m.
REGISTRATION DEADLINE: September 6
By Julie Stachowiak, PHd
I have twin girls who are now six years old. I was diagnosed with multiple sclerosis a couple of years before they were born, so it has always been present in our little family. I guess there was never a question about whether or not to share my MS status with them — it was too big to hide.
One of my first memories of the girls really understanding that I wasn’t entirely well was when I had been reduced to tears by some incident.
One of my small daughters came to where I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.”
The experts will tell you (and I can confirm) that young children pick up when a parent is not feeling well. Child psychologists will tell you that this can manifest as increased clinginess, regression in terms of speech or potty-training progress, or reversion to younger behavior (such as needing a pacifier). Older children may get worried that something terrible is happening — that their parent will die, that they will die, that they did something bad and whatever is going on is all their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally, or acting out at school.
Those same experts say that we should answer all questions about our MS honestly and directly, adjusting information as they get older. That might, or might not, work for you. I know that some people choose to keep their MS from their children until they reach a certain age or something happens where it must be revealed. These parents may feel they are protecting their children from the pervasive worry of having a sick parent.
I think that it is an individual choice. We all have to make our own way as parents. I can’t tell you what to do — I cannot tell you that you must be open about your MS with your children.
The only thing I can tell you with 100 percent clarity is that it is impossible to show your children too much love.
As far as my situation goes, I have chosen to be very open with my daughters (in an age-appropriate way). I tell them when I am tired and I tell them when I feel better and I make sure that we do something fun and active during those times. We discuss MS and I have tried to explain to them what is happening in my brain. They know that I don’t like it when music is too loud or when we’ve been outside in the sun for too long.
I won’t say that I have handled it perfectly. I have seen one of my daughters looking at me with a furrowed brow too many times, while the other one may come into my bedroom with “nightmares,” when I suspect she really just wants to check on me. However, I do think that they are considerate, gentle and compassionate. They seem slightly less self-centered than some of their classmates. They are not afraid of people who are different — we have friends with Down syndrome, who use wheelchairs and who are hooked up to oxygen. My girls don’t seem to see any of it, just the person whom they want to tell about their Halloween costume or their newest toy. I’m proud of that.
Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com.
Society Resources for Families
- nationalMSsociety.org/Family Matters contains links to helpful brochures, programs and resources.
- Keep S’myelin for back issues and subscription information. Each issue has fun, engaging activities to help parents and children learn about and discuss MS together.
- Plaintalk — A Booklet about MS for Families for information on talking about MS with family members and Someone You Know Has MS for children at nationalMSsociety.org.
- Join the online “Family Matters” community at MSconnection.org.
- Watch the Society video “Parenting with MS” at youtube.com/watch?v=V93TG_0LJiA.