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TMJ Resources - Our Family - Life With a Sufferer
Thoughts From a Daughter
There comes a time in everyone's life when there is a natural role reversal between parent and child. The "adult child" takes the reigns of the ailing parent's physical, medical, emotional care and financial responsibilities. And ultimately in this time, parent and adult child find a better understanding and respect for each other through this bond.
Carole has been suffering with TMJ and related illnesses for years. She somehow manages to get up each school morning, the pain constantly in her jaw and neck. Fighting back the tears, she teaches her 26 students, 6 and 7 years old. She is a devoted teacher, with a calling to the profession which could be a called a "life" as in the religious sense. Her "pain tolerable time" given totally to them, in order to have an income. She is physically and emotionally exhausted at the end of the school day after masking her pain for 9 hours. Available treatments seem to give little relief but she continues to make full use of every avenue offered.
Sharon is Carole's daughter. She tends to her mother daily as soon as she she comes home. Sharon cooks meals, cleans, shops, budgets, pay bills, does laundry and makes most of the important decisions in the house herself. She bathes, medicates, and comforts her mother to the best of her ability, often into the early morning hours. She tries to provide emotional and physical support for her mother, but is often frustrated in her attempts. Her relationship with her mother is strained. She does not know her mother without the intrusion of constant pain. Sharon feels nothing she does is good enough, as her mother's pain is verbally directed at her by the end of the day and Sharon feels guilty for this. Her relationships with friends are few, as she can't relate their lives to hers. Her responsibilities to her mother have priority over the simple things her friends enjoy that she would like to do as well. She is resentful of the role she has had to play and hates coming home everyday. Sharon cries herself to sleep most nights and prays the next day will be better for both of them but they nearly never are. She is often severely depressed and has considered suicide and even overdosing her mother so the pain will end. Sharon is 10.
This is the real life perspective of a TMJ patient from her child. And I lived it.
Over 25 years of TMJ have passed since then. My mother Carole is now 57, and can no longer teach. She is on medical leave which will be ending soon and can not afford to take early retirement. She does not qualify for Social Security benefits. She lives with her mother 78, who is retired from the health field as Carole can no longer live alone.
My mother, now 90 lbs., and bed ridden most of the time she is unable to eat even a soft diet or speak but for short periods most days. Her pain is both acute and chronic, and medications for pain management give her little or no benefit. Visits to the ER are frequent during acute episodes and I fear she will be listed as "drug seeking" soon. PT has been stopped as she is unable to tolerate and perform the exercises even with assistance. Counseling, dental appliances, neurological therapies etc., continue as long as she is able to tolerate the drive to her appointments.
As her daughter, I know that the reality is that she will be in a nursing home on IV nutrition and morphine before long. She will end up taking the retirement package offered her and we will be forced to sell her home to pay for her care. Legal lose ends have been tied up, and her wishes for funeral plans discussed. Closure is in progress.
Mom and I have struggled to find a new understanding of each other beyond the pain. Some days are more successful than others and I'm sure she has found moments where she bites her lip as I do. Some things are better left unsaid, the past can not be relived and the pain certainly shouldn't be at this point. Today is what we have. I reservedly accept that she little time left on this earth but continue to search for something to help her,others like her, and their families.
My question to you as health professionals is this. Why?
Why, in this age of space technologies being implemented in medicine, haven't advances been made in TMJ treatment?
Why, aren't biomechanics and nontraditional medicine such as herbal therapies, acupuncture etc, currently a standard option in treatment???
Why do currently acceptable TMJ surgical treatments continue to be performed when the results more often than not place the patient in more pain as a result and start a cycle of never ending surgeries to repair the surgery?
Why is information and awareness of this disease so limited to the public and the medical profession in general?
TMJ patients are no less deserving of our compassion and support than any others suffering chronic pain. I implore you to consider the thought of having nails relentlessly hammered into your jaw the next time you see a TMJ patient. Or the thought of having to miss your own child's wedding because you can not stand without passing out from the pain. This is the reality of TMJ.
Thank you, Sharon
