When Your Adult Child Has MS - dummies

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

As challenging as it can sometimes be to have multiple sclerosis (MS), parents say that it’s even more difficult when your child has it. No one ever wants anything bad to happen to their kids. When a child is diagnosed with MS — either as a youngster or as an adult — parents tend to feel overwhelmed with a lot of feelings, including anxiety, guilt, and anger.

Because MS is primarily a disease of young adults, a lot of middle-aged or elderly parents are left wondering what to do to help their kids who have been diagnosed. Clearly, the old “keep ‘em home from school and give ‘em lots of fluids until the fever goes away” doesn’t really work.

Yet the same feelings that made you want to care for and protect your kids from harm when they were little are still there even though your kid is now 30, 40, or even 50. The result is that you may tend to fall back on old parenting techniques that don’t apply any more.

Here are some tips on how you can still parent when your child is a full-fledged adult:

  • Have a heart-to-heart with your adult child, with the goal being to figure out how you’re going to support each other in this situation. Parent-child relationships are a form of care partnership, so you and your child need to figure out what each of you can do to take care of the other.

    For example, your child needs to recognize that you’re concerned and feel just as protective and parental as you always did. You, in turn, have to recognize that your child is now a grown-up who needs to deal with this life change in his or her own way.

  • Negotiate what you can expect from one another. Your adult child may just want emotional support, or he or she may welcome advice, financial assistance, hands-on help, or a hundred other things. So you need to be prepared to talk about what you can and can’t provide.

    On the other hand, your child may want to sort things out alone for a while. This is a reasonable request, but as concerned parents, you also have every right to request periodic updates.

  • In the event that your adult child becomes too disabled to manage on his or her own, discuss care options. Discussions about long-term care and related topics are most effective when they happen along the way.

    Even though most people don’t ever require this level of care, discussing the options ahead of time gives family members the opportunity to sort our their feelings and needs so that difficult choices don’t have to be made during a crisis.

    One option may be for your child to come back and live with you, but talking about all the options is important in order to make sure that everyone’s needs are being met. If the solution doesn’t work for you and your adult child, then it’s not working.

  • If your child moves back into your home for health or financial reasons, renegotiate the parent-child “contract.” Otherwise, each of you will fall back on whatever rules were in place the last time you lived together (which was probably in your child’s teenage years).

    Any child who has lived independently will want to continue to have a certain amount of privacy and freedom to come and go. You, on the other hand, may begin to worry about your child’s welfare and safety just as you did in the old days — particularly if he or she now has mobility, visual, or cognitive problems that may affect driving or other activities.

    An honest conversation will go a long way toward helping you sort out a plan that works for everyone. In general, we recommend that you and your child maintain as much independence as possible, while keeping each other informed of schedules and whereabouts and coming together when you want to spend time together as a family.

  • Because this is a care partnership, everyone needs to be on both the giving and receiving end. If your adult child finds it necessary to return to your home, he or she may feel guilty about imposing in this way, and may be concerned about not being able to provide you with the assistance that you may need as you get older.

    But there are many ways for all of you to take care of each other. Work it out so that everyone is a contributor to the household.

  • If the situation gets too tense or emotional as you try to figure out a plan that works for all of you, consider talking with a family counselor. An adult child moving back into his or her parents’ home isn’t an easy change for anyone, and an objective third party can often help the conversation along.