Multiple Sclerosis: How to Keep the Family Rhythm Going - dummies

Multiple Sclerosis: How to Keep the Family Rhythm Going

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Unfortunately, multiple sclerosis (MS) can disrupt your family’s rhythm just the way that having weekend visitors temporarily changes the way you do things. But, because this visitor isn’t going home, your challenge is to figure out how to fit MS into your lives with the least amount of disruption possible.

All families have a rhythm of their own. You may not hear the music playing in the background, but over time, each family establishes patterns, procedures, and schedules for everyday living. This rhythm is part of what provides the feelings of safety and security that people look for from family life.

MS can be greedy. From time to time it can tap all the family’s resources — money, energy, and time being the most obvious. This is why it’s important to give MS some space in your life without giving it more than it needs.

Every member of the family is at a different place in his or her life, and each needs a share in the family’s resources. If MS saps too much of any of these resources, the result is a disabled family.

Coping with the direct and indirect costs of MS

The direct and indirect costs of MS in the United States come to almost $60,000 per person per year (for an annual cost of $24 billion!). About half of this is related specifically to healthcare (medications, doctor visits, hospitalizations, and so on). The rest is accounted for by lost wages, unpaid caregiving activities, and other items. Most people with MS fortunately have health insurance coverage. Nevertheless, the out-of-pocket expenses can be high.

Because the expenses for MS are high, we urge families to consult a financial planner early on. Even though you can never predict how your MS will progress or what expenses will be involved, it’s a safe bet that you’ll come across expenses that you never counted on having. A planner can help you anticipate possible expenses and identify strategies to meet these expenses should they arise.

One of the reasons that financial planning is so important is that MS isn’t the only hungry mouth waiting to be fed. Summer camp, orthodontia, vacations, college expenses, and retirement are always waiting in line for their fair share of the pot. Unfortunately, these typical life expenses don’t disappear just because MS comes along. The goal is to ensure that MS doesn’t take more of the pie than necessary.

MS and family priorities

One of the things we hear a lot from families is “MS really helped us get our priorities straight.” For these families, the MS made them stop and think about what things in life were most important to them and what they needed to do to make those things happen. Obviously, the priorities are going to be different for each family, but the process is the same.

For example, one family may decide that quality family time is a top priority. Given that dad has a lot of MS fatigue, they need to figure out how to take that into account when planning shared activities. Maybe they decide that dinner will be 30 minutes later every day to give dad a chance for a power nap when he gets home from work.

Or, maybe they decide that the kids can take over mowing the lawn so dad can use that time to rest up for the afternoon soccer game (and dad agrees to take his scooter to the field so he doesn’t get too tired to cheer the team).

The examples are endless, but the point is that the family needs to identify a priority and then figure out how to make it happen. Other priorities may include making family trips accessible, increasing monthly savings, or having more company at the house so mom can stay connected with all her friends. The goal is to ensure that everyone’s needs are balanced.

MS problem-solving: Many heads are better than one

Living with MS takes creativity and flexibility. Each new challenge that comes along demands a response; otherwise MS threatens to run the show. Your best strategy for meeting MS challenges head-on is for you and your family to put your heads together to come up with a plan. This strategy provides more brain power to deal with the problem, and it also helps make sure that everyone buys into the solution.

If, for example, mom is having problems with balance, she and her family can think about ways to deal with it — perhaps by rearranging the furniture to make the house more convenient for her, helping her pick out a snazzy new scooter, or considering a move to a one-story house.

Or, if the co-pay on her medications has increased, the family can work together to figure out where those extra dollars are going to come from each month. One of the advantages of this kind of shared approach to problem-solving is that everyone feels some ownership of the process.