More MS news articles for September 2002

Curious Eyes Are Upon US,2265,32924820,00.html

1st Sep, 2002
Marcia T Tofteland
Real Living with Multiple Sclerosis

AT FIRST GLANCE, this month's article may appear to be less related to parenting than previous pieces. I was initially worried the subject matter was too self-absorbed. My husband, Curt, helped me realize that the problems I'm experiencing relate to a number of child guidance issues that are relevant and important to our growth.

As parents, we want our children to be prepared to deal with the difficult circumstances life will inevitably present to them. We want our children to find lasting self-worth. No matter what the age of our children, the way we deal with life's problems will be a model for them.

I've been coping with the seemingly interminable problem of daytime caregiver/housekeepers. As a result of my advanced secondaryprogressive MS, I'm virtually quadriplegic. The limited movement I do have above the waist doesn't allow me to perform any tasks necessary for my own care or the care of my family. I'm completely dependent on others for my every need.

As a result of my overwhelming dependence, I must have caregivers around the clock. My husband is a loving, unceasing, constant caregiver whenever his phenomenally busy life permits. From the moment he comes home from his hectic 10-hour daf, he's tending to my needs. When he isn't physically helping me at home, he's reading mail, paying bills, and on and on.

Even with Curt's constant commitment and care there are long periods of time I must have employees provide care for me. For 8 to 10 hours during the day, 5 to 6 days a week, we must hire a caregiver/housekeeper to take care of me and everything that must be attended to in our home: cleaning, laundry, cooking, grocery shopping, and other errands. In addition to these tasks, I must have help getting to and from doctor's appointments, hair appointments, shopping trips, and so on. It's endless.

In 7 years, we've had over 106 people in and out of our home (the "revolving door," as we affectionately call it). There have been a few people who have stayed several months to just over a year, but the majority stay between 1 day and 3 months.

An astounding number of people, we've discovered, have no integrity, no work ethic and, hardest to accept, no conscience. Maybe Curt and I are naive. I prefer to think of it as having faith in human beings. I must admit, it's getting harder and harder to keep that faith alive.

I can't even begin to count the number of people who don't show up for scheduled interviews after having sworn to do so. Even worse are those individuals who take the job, work for a couple of days or a week, and then never show up again, without the courtesy of giving notice. When this occurs, as it all too often does, I'm left completely alone. My spirit sinks and I must gather all my strength to simply continue the search for an honest caregiver. Somehow I do find the strength to go on, looking for that one person I can count on.

Watching Us Cope

So what does this have to do with parenting? Everything. Our children watch the way in which we handle adversity. They observe how we handle life's difficult situations. Are we too emotional? Are we coldly rational and distant, or do we find a healthy balance? Do we say, "I can't believe that happened yet again! I have to start over from the beginning." Do we then take the necessary steps to solve the problem, or do we allow ourselves to fester in the difficulty and anger of what we are experiencing?

Whatever the age of our child/children, they observe how we deal with our adversity. Being proactive, even when we are upset, will help them learn the necessary coping skills for life's challenges. They will see that when something negative happens, it's okay to be angry and upset, but taking steps to find a resolution to the problem will help alleviate the negative responses and move us forward.

We want to make sure our children know that we have choices in life. We can choose to sink into the quicksand of despair or move forward toward a solution.

Holding on to a strong sense of self-worth in the face of adversity when nothing seems to be going the way we want is a monumental task. It's easy to slide into playing a negative tape in our mind that asks "What's wrong with me? Why do so many of the people I need (and pay to be here) choose not to stick with me? Am I a horrible person?"

I find it almost impossible to not take these caregiver abandonments personally. I have to constantly remind myself that, no, it's not me. These issues of courtesy, honesty, ethics, and integrity that I've come up against all too often are the problems of the perpetrator. Whatever the reason, these people are incapable of common human decency.

How do we help our children understand these complex life lessons? On whatever level appropriate, we must include them. Talk to them about the difficulties we are experiencing and the way we are working to maintain balance in the face of chaos. At any age, our children will see us, hear us, grow and learn from our example. They are watching.

© 2002 Real Living with Multiple Sclerosis