Family Cares.

NOVEMBER IS FAMILY CAREGIVERS MONTH. THE TOFTELAND FAMILY WORKS EVERY DAY TO CARE FOR EACH OTHER AND FOR THEMSELVES BY PLAYING THE CARDS THEY'VE BEEN DEALT.

CURT'S STORY: THE DAILY CARES OF MS

Three players are seated around a card table. The cards are dealt. Player number 1 picks up the cards, looks at them, blames the dealer for dealing such lousy cards, rants and raves about the unfairness of the world, curses his miserable dumb luck and how everything bad always happens to him, throws the cards onto the table, and storms off refusing to play.

Player number 2 sits frozen in his chair staring at his cards, unable to play for fear his cards might not be good enough to win and unable to discard any cards for fear the ones he will draw will not be better than the cards he has discarded.

Player number 3 picks up the cards, studies them, discards 3, is dealt 3 new ones, and begins the game ...

Which player are you?

I am player number 3. I choose to play with the cards I have been dealt. I choose not to be a passive observer like player number 2 or a quitter like player number 1. I choose active engagement in life using my mind, my heart, and my soul.

My wife has progressive multiple sclerosis. We have been together since 1979, 20 years this September. She has been physically impacted by MS since 1985, 14 of those 20 years. Although her MS attacks started slowly, they appeared regularly and over time she has become severely affected. Josh, our 17-year-old son, can't remember a time when his mom was not physically challenged.

I am my wife's primary physical caregiver. It seems to me that I have been a caregiver my entire life. By the time my youngest brother was born, my parents had 5 children all under the age of 7. Being the eldest of the brood, I was taught responsibility at a very young age. In fact, I don't remember a time when I did not have responsibilities for my younger siblings. The result is that as an adult, I am very responsible. Perhaps, excessively so.

It is important to note that over time Marcia's MS has taken an ever-increasing toll on her abilities, resulting in her becoming more and more physically dependent. I have been conducting the following care-giving rituals for the past 5 years. This is a typical morning in my life:

I awaken her each morning at 7:00 am; while she is still in bed, I limber her up by stretching her legs, arms, shoulders, hands, and fingers; I sit her up in bed and, after her blood pressure stabilizes, I carry her to the bathroom, where I sit her on the commode; while she evacuates, I get her a piece of matzo cracker from the kitchen--the matzo helps settle her stomach. When she has finished, I give her her medications.

On the weekend or when we are away from home, I dress her--but during the week, she has a home health aide who bathes and dresses her. So, on weekdays, I clean her and put on her pajama bottoms and footies, get her into her electric wheelchair, and take her to the kitchen where her computer lives. I roll her into place and get her adjusted. I put her reading glasses on--if they're dirty, I clean them first. I put the portable telephone in her left hand and the headset on her head. Finally, I complete my morning toiletries, get dressed, and depart for work.

This is my typical evening: we head for the bedroom around 9:30 pm. I undress the top half of Marcia's body and put on her pajama top; I give her a floss stick and, while she flosses, I prepare her electric toothbrush; after she has brushed, I help her rinse her mouth, first with water and then with mouthwash. Then I give her her medications. I remove her from her wheelchair and carry her to the commode; after she evacuates, I clean her, remove her lower body clothing, and carry her to the bed. There, I put Barbasol cream on her backside to protect her skin. I roll her over and put her feet in splints, which are needed to prevent joint contractures. I raise the foot of the bed and put rolled-up washcloths into her hands--this stops her fingernails from digging into her palms. I find a television program she wants to watch; I set the alarms, complete my toiletries, and get into bed. At last, sleep!

But not quite. Marcia wakes me every 3 to 4 hours to turn her over. This relieves pressure and helps prevent bedsores. We have just purchased an adjustable bed which has helped immeasurably both for her pressure relief and my bad back.

Other physical caregiving that I do includes helping Marcia feed herself; bathing her when we are away from home; helping her in and out of the car; in and out of bed for her nap; picking things up for her when she has dropped them; combing her hair; helping her with her make-up and jewelry--and a multitude of other things she can't do without assistance.

It is important for me to point out the reciprocal nature of caregiving. My wife is also a caregiver. Although Marcia is on the receiving end of all this physical care, there is a more balanced relationship in 3 other vital areas--intellectual, emotional, and spiritual care. She is an important caregiver in each of these for me and for our son. Her greatest strength is her emotional caregiving. She is far more developed in that than I am. In this area, she has been my mentor.

Physical caregiving is not only hard work, it is also time consuming. The hard work I'm used to; the time-consuming part is more problematic. I get up at 5:45 am and either ride my bike or go walking with my dogs; upon returning, I do the morning ritual with Marcia. I stop at the coffee shop for breakfast. (Josh has been getting his own cereal in the mornings since his primary-school days, and now that he's a teenager he doesn't like to get out of bed early.) I get to the office at 8:15; I work without a lunch break. On average, I get home at 7:00 pm. I eat dinner, go through the mail, pay bills, do the evening ritual with Marcia, and fall asleep around 11:00 pm. Obviously, I have very little time for myself. My bike ride or walk are about it.

I'm always dealing with a very demanding work and physical caregiving schedule. Too often, I am afraid, my patience is exhausted and my temper is short. I wrestle with this because I want to be a good person. The reality is that I am a bit of a perfectionist. I feel bad about myself when I lose my patience, quickly followed by losing my temper. The person who bears the brunt of my loss of patience and temper is usually Marcia, the one person who doesn't need any more b.s. (bad stuff) heaped upon her.

So, how have we survived this struggle for the past 20 years? How will we survive this struggle in the present moment and in the future? What is the secret?

Love and friendship are certainly strong factors. So is making the choice to take responsibility, attempting to live in the reality of what is, and talking each day one at a time. It also helps that Marcia and I really like each other as well as love each other. Because we have a deep loving friendship our lives together are not just focused on and consumed by the challenges of physical caregiving. Marcia and I find great joy together. We travel both for business (lectures and workshops) and pleasure, we eat out, we go to the movies and the theater, we spend time with close friends.

Josh has grown up in a home where his father cooked, cleaned, did the laundry and shopping. He's comfortable doing these tasks as well, and other than a preference to have his own room in disarray, he is a delightful young man.

Faith and hope are exceedingly important to Marcia and me. But what has primarily worked for me personally has been a conscious practice of forgiveness. I think about forgiveness even before respect, understanding, compassion, empathy, or acceptance. Forgiveness of myself for being all too human; forgiveness of Marcia for having MS (which, of course, she is not responsible for); forgiveness of the hand of cards that life has dealt us; forgiveness of God.

Sound too simplistic? I have found great power in forgiveness. I am not speaking of something centered in the intellect, the rational center. The forgiveness I am speaking about is in the heart the emotional center--and in the soul--the spiritual center.

Before I became a father, I would have said that if it came to a choice between me and my child, I would choose giving up my life so that my child could live. I owned that belief on an intellectual level. I thought I also owned it on emotional and spiritual levels. I was wrong. I had to have the actual experience of watching our son being born and of holding him seconds after his birth to truly own that belief on emotional and spiritual levels. It was the experience that moved me there. It is the experience of living the life I live now, and overcoming the challenges, that keeps moving me to a deeper understanding of what this thing we call life truly is.

RELATED ARTICLE: Marcia's Story: The Gift of MS

I lived the first 25 years of my life as Cuff's "player number 3". I had a happy, secure, and successful childhood. I embraced life fully and looked forward to every day as a new adventure. Like player number 3, I was not always thrilled with the cards I was dealt, but I was always ready to take a risk and play. To be honest, I was pretty lucky at the game.

I realize now that some of that luck came from having a spirit charged with the belief that life was worth living. Now, I was no Pollyanna. As an older teenager, I had all the typical doubts and questions about life. My method of quieting my mind and connecting to my soul was to experience nature. Whether walking in the woods or resting in the backyard of our suburban home, the beauty and sounds of nature would allow me to hear a small truthful voice within me. I know now that practice was a personal meditation.

When I was young, I wrote poetry, prose, nonfiction, and satire. My mind was full and I loved expressing it. I recently reread some of it and was amazed by the wisdom of that young woman. The writing reflects a more mature soul than the author herself understood then.

But in my early twenties, life became much more difficult. Disappointments, unrealized expectations, and personal tragedy took their toll. The death of my father and several others close to me added to my burden. Then, my most comforting friend, nature, also shook my world--literally. I was at home alone when a major tornado hit our house, forcing me and my newly widowed mother to move out for three months of repair work.

I began to blame my easy childhood for leaving me ill-prepared for life's inevitable pain. I was full of blame. If only I had been retained by the professional acting school I had attended in New York City (what were they thinking ... they were crazy not to bring me back for the lost year). If only my father were still alive. If only my beloved theater (which I started with two other optimistic souls) had survived. If only the tornado had not been so devastating.

At some early point during these events, I stopped writing. This onetime player number 3 was allowing challenges to become insurmountable obstacles. Witness the birth of a player number 1. I plunged into a phase of distancing myself from anything that could touch me too deeply. "If I don't love too much, then it won't hurt too much." But after a series of major life mistakes, I began to see what I was doing to myself. I sought and developed a relationship with an extraordinary psychologist. He continues to provide crucial support for me on occasion.

Counseling helped reintroduce me to the life force that had been such a strong component of my earlier self. It had never really gone, but it was hidden under layers I had allowed to build up. My childhood had, indeed, protected me from all but the normal difficulties of growing up. I didn't have any point of reference for disaster, and when it arrived, it knocked the floor out from under me. But my childhood had also enabled and encouraged me. With help, I began learning that what felt like a terrible wound to my spirit was actually a crash course in maturity. I started taking risks again. Healthy vulnerability felt good. I truly did begin to heal. And just when I thought it was safe to get hack in the water, jaws appeared. It was a shark named multiple sclerosis.

In truth, in the first few years my MS was benign enough for me to ignore it. Three-and-a-half busy, productive years followed my diagnosis. I was blessed with a wonderful husband, a new baby boy, and a career in theater administration that I had grown to love and identify with deeply. My life left me little time to worry about the odd tingling in my hands and legs.

Without warning, a ruptured ectopic pregnancy disrupted my health. My MS exacerbated. Overwhelming fatigue and problems with balance forced me to leave the career I loved so much.

I had been dealt another devastating hand. Where could I go from here? Who was I now?. I was very, very angry. I was miserable to be around, hard on Curt, and hard on our sweet, nearly 3-year-old son, Joshua.

Curt had the wisdom, patience, and foresight to bring home some books he knew I would benefit from. Books on self-help and spiritual insight. No pressure ... he simply mentioned that he thought I would like them and left them within my view. It took me months but eventually I did read them and their benefit was great. The books brought home 2 important lessons for living with MS: "I am in control." "I have choices."

Now, I hear many of you thinking "What? I have never felt less in control than I do now." That is true of physical existence. We have very little control over the ultimate outcome of MS, although recent medical developments have increased our power in this area. But we do have control over the choices we make. We can choose to allow MS to flatten our lives like a bulldozer rolling over a soda can, or we can choose to strengthen ourselves emotionally and spiritually so that the essence of who we are cannot he bulldozed, regardless of our physical situation. Curt's guidance and my reading helped me realize this.

As Curt says, pain is inevitable, misery is optional. Misery is a choice. Dwelling on loss is a choice. Focusing on what I wish my life could he is a choice. We all experience feelings of anger, loss, and guilt. Pretending we don't is just another way to avoid accepting reality. But staying there with those feelings is a choice.

The reality is we have MS. Accepting the cards we've been dealt is a process that must become a part of our lives. Forgiveness is a part of that process--forgiving ourselves for dealing such a rotten hand to the people we love. We really can choose to reject dwelling on the losses and thinking all the time about the way we wish things could be. Instead, we can choose to live in this moment, right now, and work on making life a journey of discovery.

This process of acceptance, of healing, doesn't happen instantly or effortlessly. It takes time and intention to quiet the distracting noises rattling around in our minds so we can hear that small truthful voice. Working on acceptance helps let other people in.

Remember the 3-year-old boy I was so hard on? Once I began working hard on acceptance, my relationship with him became more honest--and more fun. He is an important port of my support group, though I have never asked him to provide any physically personal care. I'm sure he gets tired of hearing me call "Josh" as frequently as I do, asking for help. Still, I'm certain the difficult circumstances have contributed to making him the compassionate person he is. My support group also includes my 80-year-old, very active mother, my sister, and one particularly devoted friend along with other friends who help as they can.

Living in the moment means dealing with the harsh reality of the moment as well as celebrating life's joy. Would a cane help you navigate more easily? Do you need a scooter to conserve limited energy. Is a wheelchair essential if you are to participate in life? I confess my reluctance about accepting each one of these changes.

Curt and I have just experienced the difficulty of finding a better sleeping arrangement. Neither of us is quite ready to stop sleeping in the same bed. That day may come, but we're living in this moment. Today our new dual adjustable bed seems to help Curt do less damage to his back as he lifts and repositions me during the night. I am putting off dealing with the fact that my wheelchair is no longer adequate for my current physical needs.

These recent challenges have been difficult for me. I deal with issues emotionally before I can find a rational balance. I know that coping with a challenge when it presents itself is easier than procrastinating. I know that refusing to accept what is wastes precious time. I know we can only know now. And I know hard problems are not reserved only for people with chronic illness. No one is immune. But it has taken me years to be closer to following my own philosophy and I still have to work at it.

It's work for me and Curt to keep destructive "noise" from cluttering our minds so we can find value, meaning, and joy. But we both believe we can accept what we cannot change--and we can heal what we cannot cure.

Marcia T. Tofteland is a freelance writer and Curt L. Tofteland is the producing director of a professional theater. The Toftelands are currently at work on a book on life with MS or other unexpected obstacles. They offer workshops nationwide and have been invited to appear at the Society's Oregon, Mid-America, and Dakota chapters.