I’ve found it difficult to tell the stories of my Caregiving without recalling earlier life experiences that, in some sense, gave me the stories to tell. I suppose, wrapped up in the confusion of all persons who become their parent’s parent, there is an ongoing struggle within each of us to find a workable balance between childhood and adulthood.
I thought a lot about that transition after I turned 20, when I was living on my own, far from the comfort of the hometown, paying my own way, having no one to answer to, being independent, demanding I was an adult, often wishing I had never left the comfort of home, feeling as if I could never go back.
Well, I did go back, but not as I had left. On leaving my hometown, I’ve often used the burning bridge analogy when I’ve said, “I didn’t really burn any bridges, but the fire was hot enough that I could feel my ass burning!”
It was time for me to leave. And leaving town was one of the best things I ever did for myself. If nothing else, it allowed me the time to contemplate the transition to adulthood.
Over time, this occurred to me: When we are children, we are bound by our parents’ reality and what they say goes. They see what they think is best for us from a perspective based on their own reality. They are responsible for us, and as long as we are children, they have no other perspective with which they can compare. That’s the adulthood connection.
When we become adults, we incur our own realities and develop our own perspectives through which we begin to see what is best for us. Often, what we see and what our parents see are very different. But that’s okay. As adults, we have the freedom to believe enough in our own realities to be self-confident enough to tolerate the realities of our contemporaries.
Our parents become our contemporaries in this sense – despite a well-entrenched tendency, held by many of us, to rebel against that thought. It seems, naturally, disrespectful to think that our opinions and dreams are as significant as our parents. But, having known 60-year-olds who have never accepted that fact and who still fear their parents’ retribution, it has become easy for me to continue to seek my separate reality. To me, that is adulthood.
When I was a child, my Grandma worked very hard… not to understand my reality, although that would have been nice… but, to not hate me for it. When I became an adult, I worked very hard to do the same for her. Understanding the paradox this way made my decision and my role as my parent’s parent a bit less complicated.
I must say, however, that despite the adult-to-adult relationship that GaSara and I had developed by my mid to late 20s, before I came to be her Caregiver, the role of grandchild never went away. I was her baby until the day she died. I didn’t really realize that until after she was gone.
That’s when I came to see just how much she was still there for me – even in the end. She depended on me to be there for her as much as I depended on her to be there for me. My contemporary was my parent and my child and visa versa. Therefore, the recurring paradox inundated my caregiving. Its effects were often powerful, usually subtle and most always confusing.
The dementia placed hidden weights on the scales that made the otherwise manageable balance of two contemporarys’ realities fall way out of kilter. The reality that I had learned to tolerate, as the loving adult, became one of thousands that GaSara incurred during her battle with the disease. Her reality was constantly changing and my learned tolerance was constantly being challenged.
I had prided myself on being an unusually patient person when I moved back home. I never dreamed I could become as patient as I did in the years to follow. A well-known Alzheimer’s caregiving tactic is to agree with the victim, whenever possible: to place ourselves in their reality as best we can.
Without a doubt, GaSara’s reality, on any given day, was as real to her as mine was to me. Mine remained essentially the same, however. Hers was constantly changing. It never worked to disagree with her. I tried hard to stay with her, but sometimes it was impossible.
One afternoon, I had a horrible headache…one of those like you get when you eat your ice cream too fast, but it wouldn’t go away. It hurt so bad that I knew I needed to get away from GaSara. I couldn’t even see, and I knew that if she needed me for anything, I would either break down and cry or irately beg her to go away. Neither was an acceptable option, so I took the time-out.
I went to my room, shut the door, and lay on my bed with my eyes closed. I had been there maybe 10 minutes when I heard the door open. I didn’t open my eyes at first. I knew who it was.
I just lay there, praying she would go away. The ‘if I can’t see her she can’t hurt me’ thing was going through my pulsing head when, to my surprise, I felt a soft brush across my leg. It got my attention.
Just as I had played “Possum” as a child, I barely parted my eyelids to get a glimpse, still hoping she’d go away, when she said, “Don’t you want some company?”
My eyes opened widely when I said, “No, GaSara, I’ve got a headache. I’m just trying to rest a while so it’ll go away. I’ll be up in just a little while.”
“I just thought you’d like some company. You sure are handsome lying there,” she said, with a very disturbing purr in her voice that I had never heard.
Justifiably stunned by the apparent direction her reality had taken, I quickly repeated my reality, to no avail. As quickly as I realized I didn’t know what to do, I saw a look of hurt in her eyes that I had never seen before, and my heart and head were pounding … more than ever.
Her voice got louder when she asked, “Don’t you want to sleep with me anymore, honey?”
“I love you and I want to be with you,” she hopelessly shared.
As year-long seconds past, I was sure she thought I was her second husband, Charlie DuPre. If I learned nothing else about love when I was growing up in her house, I learned that Charlie was the love of her life. And I knew I was not about to play Charlie’s role.
“GaSara, I’m Sissy, your granddaughter,” I insisted. Then I repeated the headache problem and closed my eyes, all the while praying that she’d just go away.
“Well fine, then!” she huffed, and left the room.
I was freaking out! I had hurt her. I hated it. But there was nothing else I could do. She responded like a spurned lover. And I couldn’t blame her! To her, she was a spurned lover.
I was taking all of this in when the door creaked open again.
“Hey, don’t you want some company?” she purred inquisitively. I again told her who I was, that I was not Charlie and that I was just resting.
I was even further amazed when she said, “Walker, you used to love to sleep with me. Don’t you want to have intercourse anymore?”
God!!! I’ll never forget that moment!
With all the obvious reasons that any non-spousal Caregiver would be freaked at this point, I was most intrigued that it was her first husband she was pining for. She had not been with him since 1928!
She was innocently, and in her mind sensuously, coming on to her husband, somewhere in the mid 1920’s, and I was desperately looking for a way out of my own bedroom in 1992. I could do nothing but repeat my reality. I could not place myself in hers. I sat up on the side of the bed, told her who I was and asked her to leave.
I think she said, “Well, okay then,” before she huffed again and scuffled out of my room.
I felt terrible and confused. But as soon as I heard her walk into the living room, I was out that bedroom door, down the hall, and out the back door, with key in hand, as quick as you could say, “Don’t you want to have intercourse?”
I stayed in the backyard, for about an hour, until Marjorie came over after work. When I went back in, GaSara said, “Hey, where’ve you been?” Her eyes told me she knew who I was.
The balance had returned – at least for a while.