The Caregivers' Perspective

Written by my parents, Jeff & Pam Stallings

Stephanie remembers things very differently than we do. We are amazed that she thinks the illness did not start until her senior year of college. Had we been through what we have now experienced, we would have gotten help for Stephanie much earlier.

Steph was always independent. She did not like to be hugged as a little baby! She always wanted to read it or do it herself. And when she began gymnastics, she was at the gym almost everyday developing her skills and working to tone every muscle and balance skill. (Her dance skills came naturally) and, after she had matured and her muscle type did not allow her to advance, it took us a year to convince her that it was time to move on to other activities and relationships, because she was just that way.

My wife thinks it important for other parents to know that Stephanie's entrance into this world was an easy one. Her delivery was quick and painless and she was a beautiful baby. She was our first child and the first grandbaby. She was showered with love and attention. Her family genetics offered intelligence, compassion, art, music, health, strength, and lots of energy.

She excelled in academics, going into the highly gifted classes in third grade. She consumed all that her teachers and we could give her and began exploring new areas on her own. She introduced us to foreign films and Indian food. She rangled a trip to Spain for a month. She went to the Shakespeare summer camp and the "youth who will lead the world" summer camp. She graduated Salutatorian.

But in her senior year in high school she started having trouble with her friends. That summer she was a hermit. In her freshman year of college she was plain rude to us when we arrived for parents weekend. Communications were strange and strained.

She worked fall and spring breaks to help us with finances, but went to India by herself in the summer. The next year was stranger, and that summer she got a job with the government, but seemed very alone, very distant, unhappy. She had trouble keeping up with things - car keys, check books, her stereo. She overdosed on acetaminophen. Back at school, she had a boy friend that kept promising her money, but kept spending hers. Then she hated all her friends in the dorms and moved into a coop. She hated Christmas and we had terrible fights when she came home, which was very seldom.

Something was wrong. But she was so intelligent we thought. She is learning and working her way through these struggles like she always has - on her own - independent. So why was she trying to be so perfect? Why was she always stressed? Why would she not answer the phone or call us back?

And then it happened. She got the summer job she wanted so bad, but could not function. She was scared to death. The girl who did back flips on the balance beam was afraid to drive to a resort, a restaurant or a bar to write about it for the magazine. She came home and became a lump on the floor. She could not even call the magazine to tell them what happened. Sentences were like climbing Mt. Everest. She slept or stared at the walls or cried.

She refused to admit something was wrong. Refused to go to a doctor. Her brother assured us she needed to rest and she would be okay. She did get a little better and took a semester off from school to go to Alaska to visit my cousin. She did not stay with him, but moved into a small cabin in the woods. Again she was alone and difficult to talk to. Crazy ideas rolled out of the phone when we did get to talk to her, and then suddenly she came home, back in her room. We talked to a friend about having her involuntarily committed, but the friend said she was too intelligent, she would talk her way out of it and then we would lose her completely. We let her go back to college for her final year.

How she graduated we do not know. Her friends we met at graduation did not know how she graduated. Her advisor had called to tell us she was "bazaar" and something must be done. We said we knew she was troubled, but did not know what we could do about it.

Then, she disappeared again for awhile - later we found out she had been homeless in Boston. When she came home she could only sit and stair at the wall. Sometimes she would not answer or even acknowledge my presence. She stole the car and ended up at her uncle's house - there her grandfather met her and talked her out of the locked car and into a warm shower and finally to the doctor's office.

Pam and I beat ourselves up wondering how we let it go so long. We wondered what we did wrong in bringing her up. We had no idea what to do next. We went to a local support group facilitated by a wonderful man who is a successful professional in our city who is himself bipolar. We went to the 13 week "Family to Family" training program offered by NAMI presented again by caring lay persons who also had loved ones that were mentally ill. We heard others stories and wept. Pam and I were not alone - we had each other while many others were single parents whose partners had left them to deal with the crisis alone. That seemed to be the norm. But we did learn from the group of parents, either single or couple, that the illness takes its' toll on everyone, and each were at their wits end as to how to help their loved one. We read every book we could get our hands on about others who had walked in our shoes.

We were armed with information that helped us to understand the diagnosis but did not help us to manage the illness.

We were left with our gut instinct and the love a parent only knows. It is our role as parents to protect, to shepherd, to instill values and to ultimately help our birds fly.

We think it helped to encourage Stephanie to get a job. Then she moved in with a friend. Then she moved into an apartment on her own. She lost jobs, but wanted to be independent, so she would get another job.

We never did figure out how to make sure Steph was taking her meds properly. Sometimes her memory did not seem accurate and she would say she had given a new med long enough to help. Other times she would quit a med for what we thought were irrational reasons. The bottom line is that we never have figured out how to help her monitor her drugs and respective responses.

I heard the doctor tell her she could not drink coffee, much less alcohol. Her brain chemistry was just too sensitive he said. But we have not been successful in helping her to see the negative effects of both.

The most difficult part of dealing with the illness as a parent is knowing when to step in to protect and when to step away to honor the patient's need to be independent. There is no rule book. As a parent of an adult with the illness there is even no help from the physician. He or she is bound to the patient and we as parents are left out of the loop even though we feel we have important information that would aid in the healing process.

Our family has been blessed with support. Others -- brother, uncle, grandparents, daughter in law, brother in law and our dear friends -- while they don't always understand what we unload on them, they always listen and somehow hold us up until the crisis passes.

So we live each day thankful that we have been blessed with a beautiful, truly gifted child and we pray that God's angels will continue to look after her and hold her hand when we cannot - and we pray for a miracle that someday we will learn the why, the how and the cure.