Three years ago, I wrote about my relationship with my sister Amelia, a person with mild intellectual disability. Specifically, I wrote about my struggle to accept, but more important to implement, the social model of disability in my life as her combined sibling–parent figure. At that time, we were doing well. In many ways, we are still doing well…but life has changed a lot on my own path from sibling to sibling–parent. How different things are now compared with 2 years ago when I wrote, “The Maine Effect, or How I Finally Embraced the Social Model of Disability” (Cameron, 2008). Our family coined the phrase “the Maine effect” when referring to Amelia's enjoyment at the Maine camp each summer. In my essay, I noted that “the self-inflicted bloody noses, hair pulling, skin-picking and otherwise violent tantrums that we feared on a moment-by-moment basis at home were but rare visitors at the lake, replaced instead by what felt to us like ‘a clear sky and a calm soul’” (p. 56).
Since that time, our father's disability has worsened significantly and all formal parental roles and responsibilities are now mine. I am the agency contact, the underwear buyer, the doctor's visit companion, the health care proxy, and the representative payee. It has been a rough adjustment for everyone involved—my parents, my husband, Amelia, all of the social service system workers involved in our case—and for me too. Our father's worsening health is very hard for Amelia to cope with and has made the transition into this new phase of our sibling relationship all the more difficult (e.g., “You're not Daddy!” has become a common refrain). Dad's illness is Amelia's self-described reason for a number of new psychiatric hospitalizations, despite an uptick in therapy appointments, more time with my husband and me at our home, and maintenance of the formerly magic level of Risperdal.
Recently, I sat with Amelia in the psychiatric emergency room, waiting to hear if her group home would be taking her back in after a particularly bad incident. She had landed there after engaging in an impromptu home invasion in her group home's neighborhood, replete with the entire police department of her town showing up. Amelia looked at me sheepishly and said, “But you are still going to take me to Maine, right? Maine is still my best medicine.” Making the connection between bad behavior and consequences has never worked in the long term for Amelia. I also cannot stomach the thought of denying her the happiness and fulfillment she seems to find in the Maine wilderness.
Although my father cannot travel with the family to our camp anymore, the Maine camp is still in place, still wild and remote, and still ripe with the possibility of living life one's own way. However, both the tax burden and the upkeep of the ramshackle, “off of the grid,” more-than-rural hideout are fast approaching the realm of what is financially and emotionally impossible for me to maintain. I have accepted the reality that I am not able to continue this tradition for Amelia, at least not in the exact vein of the way my parents did. Sitting at her bedside in the emergency room as she dozed, I took a moment for myself, thinking “I need to find a new way to keep her ‘Maine medicine’ going.”
I reflected on our last summer in Maine. At the start of the trip, I had spent the best part of a day in the local emergency room as a result of her pneumonia on top of both a vaginal infection and a nasty intestinal infection. The doctors and nurses we met with had urged me to do my best to keep her very clean to reduce the chance of reinfection. I remembered Amelia's wheezing and hacking, gurgling coughs, realities that still dog her. I remembered how exhausted I was from heating metal buckets of lake water over the open fire for Amelia's baths in an effort to help her keep as clean, infection-free, and healthy as possible. I remember the ache in my hands from washing the sheets in the chilly morning water of the lake—the sheets that are inevitably soiled each night—even if I set my alarm to wake her in the night to go to the bathroom (at her request). Usually, Amelia helps some with these tasks, but she was weakened by her illnesses and preferred to rest most of the time. I remember most of all being exhausted from her demands for me to do things for her—hand her a glass, make her a sandwich. I remember my feelings of resentment, “What about self-determination in breakfast making?”, I would think. My efforts to foster self-determination in the form of getting one's own breakfast cereal, for example, went over like a lead balloon.
I suppose these are feelings all parents have while caring for and supporting their children, but I am also exhausted from feeling like a parent but not being a parent. Amelia seems to respond to me more with sibling rivalry than that of an authority figure, even with sustained efforts. I am saddened about not having children of my own, but it just feels like it would be too much to support Amelia, maintain both a marriage and a full-time job, and add on a child of my own. Through my tears of frustration, I often think, “This is part of some sort of process that is larger than me right now, I just have to hang on for the ride and let the way become clear.” I have reached out to the wonderful agency and state social service staff that work with Amelia for support on this matter, but I can tell that they really do not know what to say or how to advise me on matters other than the legal logistics of guardianship. I think we are all a bit stymied about the sibling–parent role.
Finding myself back by Amelia's bedside in the emergency room in the middle of the night, I listened to the relative silence of the ward in between electronic beeps, remembering the quietness of the Maine lake on a peachy dawn morning. Closing my eyes, I remembered water bugs skimming, chipmunks skittering, and occasional gusts of wind across the lake. I remember Amelia rising after breakfast on our last day at the lake. She rose, slowly, laboriously, her rotund stomach causing her to lose balance temporarily. “I am going out on the lake,” she said, shuffling off with a sparkle in her eyes, reawakened after a few days of heavy, labored sleep along with significant incontinence and breathing challenges.
The lake was flat with the promise of a sunny, clear day, just waiting for the ripple-making of Amelia's wooden canoe. Getting into the canoe was a challenge for Amelia now. Lifting the edge of the canoe into the water is tough work, given her breathing, high stationary heart rate, and significant girth (a clear side effect from her Risperdal getting in the way of her movement but still a less worrisome side effect than the very high liver levels in her recent blood tests). Panting and red with even the slightest physical effort, she eventually got the canoe in the water herself. I knew better than to try and help her. Previous attempts had resulted in the terse, resentful statement, “I will do it myself,” shot my way.
Paddling off into the coves of the lake, Amelia marveled at the quiet, in between gurgling breaths, still as a statue except for a few meditative droplets from her paddle held above the water. I worried that she would not survive the exercise but was glad she got what she refers to as her “canoe paddle” in before leaving Maine. For years, I have read about reduced life expectancy among people with intellectual disabilities, and, watching Amelia in the canoe, that seems like an eventuality waiting to happen all too soon. However, for today, I will keep going despite my exhaustion and frustration. I will work with my therapist on my feelings of resentment and will do my best to enjoy what we have together…and I will work hard to bring back as much of Amelia's Maine medicine as possible to guide us in our day-to-day lives.
Note. “Liz Cameron,” PhD, a pseudonym, is an assistant professor of social work. “Amelia Cameron,” also a pseudonym, lives and works in her community. Both sisters hope to continue enjoying Maine and its medicine—the Maine effect—for as long as possible.