Life with MS

When I was diagnosed with MS in 1979, my husband Dave and I had two children – a 5-year-old daughter and a 3-year-old son. I didn’t know at the time that I had the primary progressive form of the disease. Nor did I know that, over the years, I would slowly lose the ability to walk, stand, transfer, dress myself, and would need help with personal care. Even though I had only minor changes in my abilities at the time – slowed running and finger movements – I worried about how my diagnosis would affect the kids.
 
Opening the lines of communication
 
Children are perceptive. Even though they were young, they could tell that something bad had happened. One night, Dave and I gathered our courage and told the kids that Mommy had an illness that the doctors didn’t know much about, and there was no medicine to make Mommy better. Our daughter’s first question was, “Mommy, are you going to die?” That night I cried myself to sleep thinking that MS had robbed my children of the carefree childhood they deserved.
 
Kids who have a parent who is chronically ill have more worries, responsibility, and pressure than other children. When we didn’t share information, the kids conjured up all kinds of fears – some of them were worse than the reality – and, we were inadvertently teaching them to keep secrets and withhold information from us.
 
We learned to be open and honest. Even today, questions get answered no matter how difficult or embarrassing. Dave and I won't pretend that nothing’s wrong. We must work together if our family is to survive. And, we must continue to remind our kids that it wasn’t anyone’s fault that I got sick; it just meant that we needed to be there for each other a little more often.
 
I also learned that sometimes the kids were afraid to ask questions or talk about my MS. At times like these, it was important for our kids to have someone – relative, family friend, clergy, school counselor, etc. – that they can talk to if they have questions or worries they think will upset you.
 
Dealing with the emotional fallout
 
With everything I was going through, I cried a lot while the kids were growing up. It was difficult to lose abilities every day and need more and more help. I found that if I was crying, the kids would clam up; they didn’t want to upset me further.
 
The kids also needed to acknowledge and understand their own frustration and anger with my illness. It's perfectly normal for them to get angry or resent the effects MS has on them. There were times when our kids hated having to come home after school to help me. I’d tell them, “I understand they would rather go to a friend’s house than come straight home, and I'd probably have felt the same way if my mom had made me come home.” I wanted them to know that being angry with me and this illness is okay.
 
When any of us needed help coping with the stress that MS was creating in our lives, we sought out help through the family doctor, a MS organization, the school, or our faith community.
 
The circle of care
 
Throughout the years, the kids also needed reassurance that, no matter what, there would always be someone to take care of them. We talked to them about others who would be there to help them at times when I couldn’t – grandparents, relatives, close family friends. This was essential to lowering their stress. They needed that sense of security.
 
It was also important that the kids didn’t feel responsible for me. We didn’t want them getting the idea that they needed to be “the man/lady of the house.” Our daughter worried about me. How I would get down to the  basement if the tornado sirens went off? Who would take care of me when Dad couldn’t lift me anymore? I tried to reassure her with potential solutions.
 
We encouraged the children to be creative problem solvers. When our son was five, I couldn’t carry the laundry baskets to the washer. I asked our son if he knew how we could make the task easier. His solution? He took belts and used the openings in the baskets to join the baskets together. Then he tied a rope to the first basket, threw it over his shoulder and pulled the baskets behind him. Instead of feeling sad and frustrated about needing more help, my resourceful child made me laugh.
 
Sadly, by the time the kids were teenagers, I was very severely disabled and needed help with everything. Dave, family members, friends, neighbors, and paid helpers provided much of the help I needed, but there were many times when the kids, out of necessity, had to help me.
 
When the children were 13 and 11, I needed help getting on and off the commode. It was horrific for me; I hated what MS was doing to me and the children. It was humbling and I tried to be respectful and understanding of their feelings. At first, it was embarrassing, but we all learned to deal with my need for help.
 
The Golden Rule
 
I tried to be respectful at other times as well. I stopped making demands, sarcastic remarks, lecturing, and asking questions like: "How many times have I told you to...?” or “Why can't you just…?" I realized I'd feel angry if someone talked to me like that, so I started beginning my sentences with "I”, not “you.” If I did lose my temper, I acknowledged my inappropriate behavior and apologized for it.
 
Being a demanding, dictatorial parent is not in our kids’ best interest, under any circumstance. We realized that if we wanted to continue to have a good relationship with our kids, we had to bury the belief that we deserved their respect and obedience simply because we held the power at the time. Our motivation became the Golden Rule: Treat people the way you would want to be treated.  One day, your children will be in a position to treat you as they were treated. That’s a sobering thought.
 
It’s not easy having a parent with a disability, so let your kids know that their help and understanding are appreciated. Give them compliments. Tell them how proud they make you. Say please and thank you. We all need to know that our efforts are valued.
 
Fears and realities
 
Our son once worried that girls wouldn't want to marry him because he had a mom who was disabled. As you can imagine, at times like that I felt like my presence in their lives was a burden and perhaps their lives would be easier if I weren’t here. But I know that as parents, no matter what our challenges are, we have an irreplaceable role and a responsibility to love, guide, and provide a safe and stable home for our children.
 
Today, our son and daughter are wonderful adults with spouses and children of their own. My MS didn’t ruin their lives. If anything, it made them stronger, more compassionate, and more capable than many adults with less dramatic and stressful upbringings.
 
 When Children Provide Care
 
Having children help us with personal tasks like toileting, grooming, feeding, and giving injections presents many questions. What’s appropriate? How old should a child be? What’s too much for a child to handle? Every situation is different. Your level of disability, the child’s age, physical size, and emotional maturity are all important factors to consider.
 
When you have questions or concerns about how to handle your need for help and the level of responsibility you are expecting from your child(ren), I encourage you to seek help from outside resources. Consider consulting and sharing your concerns with the following professionals:
 
• Your child’s pediatrician, primary care/family doctor, or a pediatric psychologist
 
• Mental health professionals who have experience counseling families where a parent has a chronic illness like MS
 
• Your neurologist and/or MS Clinic professionals
 
• A school psychologist
 
MS Focus and other MS organizations may also be able to suggest resources in your community to help you discuss how to appropriately involve children in meeting your special needs.