Op-ed: When Alzheimer's Strikes One of Us

Lesbian author Sarah Leavitt's new graphic novel, Tangles, looks at the impact of slowing losing a loved one to the disease.

BY Jacob Anderson-Minshall

May 14 2013 6:00 AM ET

Caring for someone with Alzheimer’s is no easy task, and Leavitt doesn’t shy away from sharing how hard her mother’s illness was on their family. The disease is particularly difficult on caregivers who are related: spouses, children, siblings. As Leavitt bravely reveals in Tangles, suddenly the boundaries and intimacies that previously defined those relationships began to blur.

At some point her parents’ room is no longer their sanctuary; her mother’s naked body is no longer reserved for her husband’s sexual gaze. Sexuality itself loses meaning. In so many ways, his wife is no longer his and no longer a wife.  She reverts to an almost infantile stage but remains in the body of an adult woman, making caring for her at home increasingly difficult.

In disrupting relationships and stealing away the loved one’s soul, Alzheimer’s often leaves caregivers grieving years before the person’s body finally succumbs to the disease.

There is one silver lining to the progression of Alzheimer’s: Eventually Leavitt’s mother is no longer aware of her illness and what it is costing her. With the loss of her cognitive functions, her anger dissipates.

Throughout this story of death and loss Leavitt also weaves her life: coming out as a lesbian, falling in love, exploring her Jewish identity, finding faith, and watching — somewhat resentfully — as her straight sister benefits from the privileges of heterosexuality, including legal marriage and biological children.

Life goes on.

Of course, this doesn’t mean that life is full of sunshine and happiness. Leavitt may be a cartoonist, but she admits to some darker impulses: cutting herself, wanting to drive into oncoming traffic. She acknowledges being overwhelmed, resentful, and angry. She describes walking through her life like a zombie. For Leavitt, life is complicated. But there is something beautiful in its knotted ugliness, like the tangles of her mother’s hair that Leavitt collects.

As tragic as her mother’s death is, in creating this graphic memoir, Leavitt shares some of the wonderful, funny, and touching moments that were also a part of her entanglement with Alzheimer’s.

And she gives us two important lessons: One, cherish the moments you do have, and two, don’t put off planning for the realities of old age and death — but keep in mind that things may not turn out as you hoped. As Leavitt’s father says, “Sometimes it turns out that everything you thought about how the future would be just isn’t true.”

Still, the more prepared we are, the quicker we can provide our loved ones with the care they need. The more we acknowledge that disability and death await us all in the end, the more we may cherish the (able-bodied) moments we do have.

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