CAREGIVING, CHILDREN AND MS: A POST MORTEM REFLECTION
Emily Martineau | Garland, TX
I found my inspiration to share this story after reading a letter to the editor found in the current August issue of Inside MS. The letter, a response to a Julia Graham's article "How I cope with progressive MS", rebukes the organization for being unrealistic in its portrayal of the disease. I applaud the letter's author, Carrie Kish, along with others featured, in their efforts to demand truth in reporting and accountability in accuracy from the National MS Society and its publications.
My mother was diagnosed with Multiple Sclerosis in the early 1980's, approximately 5 years before I was born. Her records suggest that in the first years of her diagnoses she experienced symptoms typical to those common in other patients: double vision, numbness, loss of bladder control. Because of the lack of severity in her condition she insisted on following through with her desire to be a mother. I was born in 1985 and my mother never did produce any more children. None of these facts are incredibly important, but simply a history.
My early memories of my mother are quite frightening. By 1990 she was confined primarily to a wheelchair, although she maintained that every day she would walk up our front steps with a walker. In what I feel was a complete failure on the part of the system, she never had to take another driving test after her diagnoses and consequently was operating an unconverted van until 1995.
I understand that for many new and old MS patients, mobility is a life altering benefit. Without the use of a car (or other form of transportation) one could be confined to a small area every day with very little outside contact. However, as the disease progresses the patients reflexes almost inevitably worsen. My mother caused multiple accidents and endangered the lifes of others and myself because of her "inalienable right" to mobility. Buying a converted van was out of the question; keeping our basic insurance coverage was, at the time, a very trying struggle.
This is where my story becomes less linear and more abstract. Sometimes it's easy to pinpoint a downfall: A lost job, a divorce, a fire, a death. Sometimes it's not. In the case of my mother's Multiple Sclerosis life seemed to become a downward spiral that occasionally plateaued to a horizontal line. There were a few major turning points in my relationship with my mother, and more accurately, MS. I clearly remember waking up one more in the room I shared with her and hearing her crying in the bathroom. She had fallen and cracked her head open on the bathtub. It's hard for me to imagine now what she was doing near the bathtub; in the last 15 years of her diagnoses she bathed only by washcloth. I believe I was about 8 years old. She laid on the ground and cried and I could not figure out how to lift her back into her chair. Her legs were dead weight and her upper arm strength was only average. I also did not know what I would do to stop the bleeding from her head. I could not call anyone for help because my father was in another state, trying to find work. I could not call an ambulance or the paramedics because we were unable to afford such a service. Our insurance payments (in the last year we were insured, 1997) were already over $2,000 a quarter and our coverage actually covered very little.
After considering all of these things I took a blanket off of my bed and pressed it to the wound. The blood eventually stopped and I devised an elaborate system of books that, when stacked, would provide some type of leverage system to boost her back into her chair. I had become quite inventive when it came to using household objects as caregiving tools. When a paramedic asked questions years later I denied knowledge of the event. I had also become quite adept at lying.
Clearly now, I realize that my mother was incredibly negligent. I will use negligent instead of abusive as the adjective of choice not because I feel that some of her actions did not qualify as abuse, but because her actions could only be viewed in the context of her MS. While the MS Society and multiple patient message boards advocate for use of children as "helpers" (a gentler word for caregivers), I have spent most of my short adult life attempting to shed some light on the real roles of some children faced with the disease.
The child "helper" seen in MS Society publications, including, I might add, the faces of their yearly teen scholarship winners, is often the child of a newly diagnosed. Problems include: "Sometimes I have to do the dishes for mom", "Sometimes I can't go out with my friends", "Sometimes we argue". While this may account for many children who experience a parent with the disease, there are those of who experience a parent's Multiple Sclerosis on a completely different level of existence. The parent's disease becomes a very dark secret for the child, not because it isn't apparent that the adult is very sick or limited in mobility, but because the child is, frankly, being neglected.
All children are often accostumed to having household responsibilities ranging from making dinner to feeding the goldfish. Depending on a number of familial factors, these responsibilities may be very light or very time consuming. For the children of adults with advanced or progressive MS that I refer to, the nature of these responibilities changes from communal organization (ie. "You will make dinner for the family because I cannot") to a complete reversal of adult-child roles. In my own childhood, I often hid the true condition of my life to teachers and other adults in a kind of defense of my mother. Her actions became very much like a little child's. She was irresponsible. I was often abandoned or forgotten about at the grocery store, school and in one instance on the side of the interstate freeway after she decided that she "should not have had children". Other times she forgot to feed me or arrange any source of food to our home. I quickly learnt to always try to go home from school with a friend to insure one meal a day. School provided lunch, I was thin as a child, but never malnourished.
An aspect of MS mentioned by the society, but rarely accurately portrayed is mental health. As her disease worsened, my mother became increasingly depressed. This depression was not simply a sad feeling or a loneliness, but a often violent and and occasionally suicidal desperation. She threw horrible fits inside the privacy of our home. She clung to me as her only ally in her battle against the diagnoses. If she was going to die, she once told me, she would have to kill me as well so that I could take care of her.
I was contacted by child protective and adult protective services when I was 13. In actuality I came home from school one day and my mother was gone and my father was gone so I spent the afternoon at a friend's eating and laughing and watching TV. I had no idea what was going on, but I knew that without a car or a contact number there was very little I could do about it. My father returned late that evening. My mother had been placed into a hospital by the orders of adult protective services. Her bedsores were very large and she needed immediate medical attention. Our house was condemned as unfit to live in and my mother was labeled unfit by the child protective services officer. I lived with a friend for a year while a whirlwind of activity spun around our family. Suddenly the government was giving us hospital beds, therapists, nurses, catheters, bedpans, home health care aids. After a year these services were terminated, because of the expense. However we were able to keep a home health care aid. My mother had become fully bedridden during this time. I promptly developed an addiction to stimulants and was expelled from high school at 16.
Obviously, other things happened since that moment, but that isn't the point of my reflection. The title of this category is "Facing MS With Knowledge". The only real knowledge I can depart on you from this story with all certainty is this: A story with MS as the main character can either be very long or very short, but there are always three basic acts. In the first act, friends and family are very concerned by your new diagnoses. You will pay for the best care and live beyond your means. New advances in medicine and mobility will be of great interest to you. In the third act you will find some peace with you or your family member's Multiple Sclerosis. I do not mean you will accept death (I am assuming MS is the main character of your story, as it was for mine, and not an aside or a stumbling villian. For myself, my mother and MS are intwined by mind and heart and nerve, even, today, a mere 7 months after her death). You will however feel a flood of sympathy from others, the world will turn. You will trace your surroundings with all of your senses and you will find your setting changed.
The most important part of the story, and the part I hope to impart on you is the second act. This is the boring part of the play. Your family and friends have forgotten about your diagnoses, although they know it when they see you. Your Multiple Sclerosis is a more familar part of your life than an old lamp. You aren't particularly terrfied or concerned about it anymore, but you've realized that MS is not smiling people at a convention on th cover of a magazine, it's about the day to day. People sometimes judge your methods, mostly those without MS or the newly diagnosed. Why don't you use the internet to talk with others who have MS? You think that obviously these people still have their money and their naivety. Why would you need to talk to anyone? You, you of all people, you understand this disease. You've done more than just struggled to button your shirt. Maybe you've shit your pants because your bowels couldn't make it in time. Maybe you've felt like hitting your patient because you can't remember what your life looked like before he was diagnosed. Maybe you've laughed and said, "Fuck it, stay home from school today and lets watch TV", because you know, you really know that sometimes you have to go against the grain to live two lives. The life where you have or are affected by Multiple Sclerosis and the life where you are Responsible Citizen, respecting education, capitalism and traffic laws.
You need to be heard. I guess that's what I want to tell you. You'll either do it now in Act 2, or you'll do it after Act 3. I suppose it's fine if the only way you talk is with disdain toward the newly diagnosed, or maybe fondness because you remember how sometimes excitement and fear are closely correlated when you embark toward something large and menacing. You must communicate, because this is the time that you will not want to.
It is the stories from people simply working through these days that are missing from the written, personal history of Multiple Sclerosis. The National Multiple Sclerosis Society would do well to acknowledge these individuals for the benefit of all those newly living, currently living and no longer living with MS.