Measuring Quality of Life Inch by Inch
By Suzanne Mintz

It's actively rearing its ugly head again-the MS that is. This quixotic disease has been toying with my husband Steven's body since 1974. It never goes away. In fact, it is always getting worse, but at times it seems to be dozing for a little while before reminding us again of its awesome power. Thus the decline in Steven's mobility has been continuous, but relatively slow, somewhat like a dripping faucet in a stopped up sink. It's not a big problem initially, but as the water continues to drip and its level in the sink rises you wonder if it will stop in time or pour over the edge and wreak havoc on the floor. Steven's MS is getting closer to the havoc point.

I notice it most keenly in our tiny 4' x 14' bathroom, the final three feet of which is taken up by a stall shower with a built-in bench. The short side of this long and skinny salle de bain, the one the door opens onto, is the outside wall of the house, straight ahead is the sink, and beside it the toilet and then the shower, a very economical design. Everything seems magnified in the bathroom because the space is so small, and I measure Steven's increasing degree of difficulty in increments of the two-inch by two-inch black and white tiles on the floor.

The bench is really a tiled ledge that takes up the width of the shower, apparently a 1950s fashion statement that is an accessibility feature for us in the 21st century. Over the years we have reduced the height of the threshold that is meant to keep the water in the shower, so that now there is none at all, merely a slight rise that makes it possible for Steven, holding on to grab bars for dear life, to shimmy from his wheelchair at the edge of the shower enclosure to the shower seat about a foot and a half away.

When Steven had more control over his body than he does today, those 18 inches weren't a problem. It never even entered my head to determine the distance between the seat and the shower opening; but a lot of things were different then, and it is the memory of what was and what yet could be that fill my heart with pain and dread as he struggles a quarter of an inch at a time to maneuver himself into the shower and lower himself onto the built-in seat.

When he is having a particularly bad day, when his hands refuse to open far enough so that his fingers can securely grip the bar, and when his feet seem to glue themselves to the floor and won't shimmy on command, or when he has a leg spasm and must lower himself onto the seat before he is in the "right" position, that's when I wonder if this is the start of another obvious decline in function. Will it be difficult tomorrow and the next day and the next, or is this really just a bad day?

As hard as it is to watch him maneuver into the shower, exiting it is much worse. For one thing it is a longer distance that he tries to traverse, not just back to the wheelchair positioned as close to the shower opening as the actual space will allow, but, rather, out of the shower altogether and then, after I quickly towel him off, onto the toilet seat where he continues the drying process himself at a more leisurely pace. Part of it, I imagine, is that I have a clearer view of the exiting process than I do the entering one, during which I am partially focused on moving the wheelchair out of the way and then helping Steven position his feet once he is settled on the shower seat.

We shower together. It's easier that way. If Steven drops the soap on a rope that has become a staple of our bathroom supplies, I can pick it up, and when it is time to shampoo his hair I might as well be doing mine as well because I'll get all wet anyway.

When we are finished showering I speedily get out, put on my terrycloth robe and position myself to help Steven during his treacherous journey back toward the main part of the bathroom.

There was a time when he could maneuver himself out of the shower without any assistance, but that was quite a while ago. Now it is a two-person process even on the best of days. Steven stands up from the shower seat with my help and wraps the fingers of his left hand around the bar directly ahead and the fingers of his right hand on the bar that runs parallel to the shower opening. He then shimmies in a zigzag maneuver to position himself parallel to the front wall so that he will exit the shower butt first. I watch this very closely, ready to step in should his hand falter or his knees lock up and not permit him to shimmy at all. But even if none of that happens, I am called into action once or twice to move his left foot slightly backward closer to the opening so that Steven can let go of the bar with his left hand, reach backward to the bar that is just outside the shower opening and then, when he is feeling reasonably steady, let go with his right hand and move it to the bar previously occupied by his left hand. From that point on I continue to move his left foot slightly backward an inch or so at a time so he can shimmy both feet and maneuver his body until it is halfway out of the shower. Then he can lean against the partition that separates the shower from the bathroom proper.

That's when I do the quick dry-chest, back, buttocks, back of thighs and inner thighs and, finally, genitals-drop the towel, usually in the sink, and help Steven lower himself onto the toilet that is conveniently located adjacent to the shower before his strength and his grip give out. From there it is usually a fairly easy process, at least from a seasoned caregiver's perspective, to bend his knees and tilt him forward so he can use his upper body to better position himself on the toilet seat. This of course is what we now consider a good day. When his legs won't bend or his upper body shifts precipitously toward the right or left, the process isn't easy at all.

There was a time when the thought of having to help him this much would have horrified me, but today it is part of what we consider normal. But how much longer will we be able to maintain our current definition of normal? The distance between the shower opening and the tile bench seems longer than it used to; I could swear that there are more floor tiles for Steven to have to shimmy over than there were even a month or two ago, and I can see the water getting ever closer to the rim of the sink.

Suzanne Mintz is President and Co-founder of the National Family Caregivers Association.