The In-between: Living With Alzheimer’s

7/25/2018

Lorien and Grandpa, 1995

This is not how I imagined my life at thirty-seven. I was supposed to be married, living in my own house, with children and a successful career in academia by now. I thought I would be spending my nights helping the kids with their homework and the weekends grading papers in between family outings and extracurricular activities. Instead, here I am, standing on the threshold of my grandfather’s master bathroom with a soapy washcloth in hand, about to have a very different kind of new experience: helping Grandpa in the shower.

Grandpa kicking butt at ping pong

To be clear, this is not how our relationship started out. When I first moved up to the Bay Area in 2014, I was just planning to spend a few fun summer months hanging out with him before heading back down to Long Beach, where my life and the rest of grad school awaited. Although Grandpa had been diagnosed with Alzheimer’s back in 2008, at the time he was still in pretty good shape both mentally and physically, showing off with one-handed pushups at the slightest provocation, and constantly laughing and joking with me, usually about whatever I told him my little brother was up to. Even though he was at the point where he could use a little extra help putting on his socks and shoes and fixing his meals on the weekends when his “babysitter” was away, he was still relatively independent, so we spent most of our time together trash talking over vicious games of ping pong in the backyard.

As the summer months progressed, I got word that my teaching assistantship at the university that fall would only require me to be on campus one day a week, so I decided to commute and extended my stay in San Jose to help out with Grandpa for the next semester. A few months later, I learned that I would have the same assistantship in the spring as well, after which point, one thing led to another, and here I still am, now four years later. Unfortunately, over this period, Grandpa’s disease also progressed, such that I now found myself about to embark on a new level of intimacy in our grandfather-granddaughter relationship.

It is probably worth mentioning here that I did not grow up in a naked family. My father (Grandpa’s son) seemed pretty uncomfortable with the whole me-having-boobs thing, so there was a fairly strict clothing-all-the-time policy in my childhood home. Consequently, I don’t remember ever seeing anyone in my family naked after I was about seven or eight, nor did I feel comfortable with anyone of them seeing me. Although outside the home I had no problem showing my body or expressing affection through physical touch, amongst my family, and particularly across gender lines, the boundaries surrounding these activities were and still are relatively firm.

My grandfather and my father’s half-sisters out in California, however, had a very different relationship with nudity and their bodies around each other. One of my aunts in particular, whom I lovingly refer to as my “naked aunt,” always seemed to be walking around while missing pants or a top, or sometimes even one or both of these in combination with bra and underwear. A few years back, for example, in mid-conversation with Grandpa she casually took her shirt and bra off to throw them in the wash right in front of him without either one of them batting an eye. Meanwhile, on the other hand, it was all I could do to keep from interrupting them to blurt out “someone get this woman a shirt!” Needless to say, Grandpa, too, has always been incredibly comfortable walking around in only his tighty-whities, which, for me at least, took some serious getting used to.

Over these last four years, however, I have gotten used to it, and in doing so I have also learned a lot about body positivity. Yes, knowing that Grandpa isn’t going to remember it even if he does happen to see me totally naked or vice versa, has definitely helped me to relax about my body and the bodies of my family members. However, this has not been the biggest takeaway for me from this experience. Instead, living with Grandpa has taught me to see bodies as more than just something private and often inherently sexual, while at the same time still appreciating my own for all its positive attributes. Don’t get me wrong, Grandpa is still far from perfect, and like all of us he has plenty of his own body issues. However, living with him has given me a window into another way to approach and appreciate my body.

In part, these lessons in body positivity have been conveyed simply by bearing witness to the process of aging. As Grandpa has said to me many times, we all get old if we’re lucky. And what I have learned from watching him over the years is that we might as well keep a good sense of humor about it too. Things sag, body parts stop working, and in the end, there is no real sense in trying to make any of it look sexy. This meat suit we walk around in is only a temporary vessel, and its ultimate value lays not in how we look in it, but rather, in how well it allows us to experience the world. Today, if one of Grandpa’s balls happens to pop out from his underwear while we are talking, I no longer awkwardly try to lock eyes with him for fear of looking at it head on. Instead, I simply take it as a reminder that he and I are both just aging humans, and to not take either one of us, or our imperfect vessels, too seriously.

In addition to providing me with these insights into aging, Grandpa has also taught me about body positivity by talking with me differently about my own body. In contrast with my father, who was not the type of parent to give me compliments on my appearance, Grandpa frequently responds to my tight clothing and revealing necklines by complimenting my figure or telling me that I am beautiful. What has been even more unusual for me is that even when I am not dressed up or looking my best, he will still find something to compliment me on, whether it is my skinny ankles (which he insists means I am a good runner), or my arm muscles (which he cautions me against using too often to beat up on my little brother). In this way, living with Grandpa has helped me reverse much of the negative self-image that I developed as a kid, and has also given me a different template from which to approach my relationships with men.

For all of these reasons and more, if I had to make the decision to move in with Grandpa all over again, I would. Yes, the transition from living alone in my own space for the last ten years to sharing a wall with Grandpa and stuffed animals on the bed has been challenging. And yes, learning how to deal with Alzheimer’s outbursts and watching for signs of pneumonia or sun-downing are not the lessons I saw myself being concerned with at my age. However, finding myself in this middle space where I am somewhere in between independent adult, loving granddaughter and part-time caregiver has once again given me a special insight into life. More than anyone else I know, I can just as easily relate to folks my parents age who most often find themselves in the new role of parental caregiver, as I can with teens my oldest goddaughter’s age, who dream of moving out on their own. This unique experience has also given me a stronger connection with myself and many of my family members, which is one of the most unexpected gifts I have received thus far from the in-between.

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Lorien Hunter
Lorien Hunter is a writer, researcher and aspiring world traveler who currently lives in San Jose, California. In 2017, she earned her Ph.D. in media studies from the University of Southern California, where she examined digital media, popular culture and marginalized communities. Today, she is a regular contributing writer at Bi.org, where her weekly column, The In-between, centers on her experiences as a biracial bi woman finding comfort and belonging in the spaces between worlds.