In many respects, living with and caring for a mentally ill person is like living with any chronically ill individual. The condition does not change much from day to day, and they require constant attention.
Some chronically ill individuals are bedridden. Extra effort is required to ensure they take their prescribed medications. Some need help with even the most basic activities: bathing, feeding, brushing of teeth—even going to the bathroom.
A friend of mine was a live-in caregiver for a bedridden woman who was very old; when he first started working with her, she could get around with a walker. Soon, she became confined to a wheelchair, though she could move it herself. But as the years went by, she became increasingly immobile, while the other things she could do for herself became ever less.
Until the end, she was able to feed herself, but my friend became responsible for making sure she could get to the toilet, could get from her chair into her bed, and even to bathe.
For a few years, he was able to take her with him to baseball games—she was a big fan of the Dodgers—and to a few other events, such as weekly church services. But eventually, she could no longer go anywhere. By then, because of her condition, he could leave the apartment for only very limited periods of time. Occasionally he could get a day away—but only when he could get a substitute care worker to take his place. Otherwise, he was limited to brief trips to do the grocery shopping or the running of a few errands—and never for much more than an hour.
Other people with chronic illness merely need to be watched and sometimes directed; or given extra aid now and again: perhaps picking them up and taking them to weekly physical therapy sessions or other appointments, reminding them to take their medications, and checking to make sure they are eating properly.
My youngest daughter, a teenager, is now on an antipsychotic medication. She is not bedridden. She can visit friends, do occasional sleepovers with them, or have them come and stay with her overnight. This is an improvement on where she was two years ago. Then, she could not be left alone at all; in fact, it was hard to even go to sleep at night because of her tendency to sneak out of the house. In contrast to my friend’s elderly patient who steadily declined, my daughter’s condition has improved and continues an upward path. Her psychiatrist is pleased with her progress.
My daughter now sleeps through the night and no longer tries to sneak out or run away. But she really cannot take care of herself; and because of her emotional volatility—much better and less extreme than it used to be thanks to the medication—we still cannot leave her alone for more than two or three hours at a time. Sometimes she is stable and patient and clear thinking and all is well; other times she explodes in an extended rage over the most minor of inconveniences, such as misplacing her iPod or simply being asked to take an empty glass back to the kitchen. She is not always very good about distinguishing between fantasy and reality. She’ll start perseverating on a topic, making up scenarios and events that never occurred in her attempt to explain her situation or emotional state. She’ll invent memories of incidents that never occurred. She is quick to assume that a missing item has been stolen and to assume that those around her are purposely trying to make her miserable.
Thankfully she is no longer violent. Since being placed on her current medication she no longer breaks out windows or punches or kicks holes in the wall; she no longer hits me or kicks me or bites me. However she is periodically verbally abusive, prone to cursing, and prone to fits of raging and yelling. These verbally violent outbursts, with an occasional slammed door sometimes arise from no discernible outward cause. Her reactions are beyond anything a normal adolescent would experience; given that she has two older sisters, we well know how teenagers can be. How my youngest daughter behaves is something else altogether.
She cannot go to school because she cannot cope with the social interaction. She is incapable of distinguishing between a genuine friend and those who wish to exploit and harm her. She has no ability to properly judge character and tends to believe whatever someone tells her. Her anxiety in a normal classroom escalates to the point she cannot function. Therefore, she must be on independent study at home. She gets work from her high school each week, relies on me to help her, and then goes to the school only once a week to take tests.
Living with a mentally ill person is stressful and exhausting. It is rare that we get any break from it. Our hope is that the improvements we are continuing to see, and the ever longer periods of normal behavior, will continue as she matures, as she maintains her therapy and psychiatric treatment, and as the medications do their work. It is likely, however, that she will have to take these medications for the rest of her life, much as a diabetic is forever dependent upon insulin injections.