My eyes bolted open at the sound of the standard tri-tone alert, that sound is familiar to iPhone owners. Now that I had been awakened, I heard the wind blowing raindrops against my window, the window itself making sounds as though it were as rattled as I was. My phone laid right next to my head on the other pillow as though it needed its own coveted space to rest upon. I mean, don’t we all treat our mobile devices as such? I picked up the phone and the light brightened my otherwise darkened bedroom. The TV and DVD player had, long before me, gone into its sleep mode after a rewatch of some I Love Lucy episodes, a pleasant sound to fall asleep to, especially during a rainstorm.
The time was 2:52am. My alarm was set for 3AM sharp, and the sound was something much louder and more persistent than the simple tri-tone. I decided that it should be something pleasant to my ears; the Main Title to Star Trek II: The Wrath of Khan by James Horner. I went through my alerts to see what they were. A wireless camera connected to the WiFi has indicated movement in the master bedroom.
Now, to investigate.
Come with me for a moment, as we walk down a darkened hallway, on our way to the light at the end of the tunnel — a slightly illuminated master bedroom, lit by the glow of a small flat panel TV accompanied by the soft sounds of jazzy Christmas tunes bellowed by the likes of Nat King Cole, Frank Sinatra, Johnny Mathis and Bing Crosby, we’ll take a detour into a bedroom on the left. This is a spare bedroom, no one lives in it. It’s sole purpose is as a storage area for bedding, bed pads, wipes, adult diapers and briefs and the padding that goes into them in an attempt to stave off leakage and somehow add comfort to the wearer. In my hands, I have what I’ve gathered — one diaper, one pair of adult pullup briefs, two diaper pads and two bed pads with an unopened pack of adult wipes.
In the master bedroom at the end of the hall, a woman named Maria lies in an old-fashioned medical bed along the far left side of the wall. The bed is outfitted with a crank that elevates up or down. The bed is in its highest position, her head is slightly elevated for comfort. She is on her left side, a pillow nestled between the bed rail against the wall, lying under her back to keep her on her side. Another pillow lies under her ankles and legs, also for comfort. A small, rounded triangular cushion is wedged between her knees to keep them from rubbing together through the night. Maria’s eyes are open — she is staring straight ahead to her left, my right.
On the far right side of the master bedroom, another bed is in the room — in that bed lies a man named Thornton, Maria’s husband of more than 60 years. His head is slightly elevated for comfort, between him and the bed rail is a pillow positioned to keep his head from tilting to an uncomfortable position. His feet are slightly off of the bed, Maria looks at me and looks at him, then back at me. She looks worried. Thornton was trying to get out of bed, the most he could accomplish was to kick the covers off of him and dangle his feet off the bed.
“Hi, Grandma.” I said to Maria, she glanced at me, then resumed her stare with a worried, and furled brow at Thornton.
“Hi, Grandpa.” I said to Thornton, he inhales and exhales as though he’s ran a marathon.
“Hi, Bry.” He said breathily.
I turned around and walked over to the light switch, I turned on the light. It had been a long time since he called me Bry. It caught me off guard, I couldn’t cry or appear sad, or upset.
“What’s up, Grandpa? Do you need to go to the bathroom?” I asked.
Sometimes he is able to walk with the walker and someone to spot him, at other times, he would need the wheelchair. I locked my arm underneath his armpit, and grabbed the band of his pants with my other hand and placed him in his wheelchair. I wheeled him into the bathroom where I repeated the lifting process — this time, he held onto my shoulders while I pulled his pajama pants and adult briefs down to his ankles before sitting him down gently on the toilet seat, a commode with rails had been installed above the toilet seat to aid with this process. While he would use the commode, I left him to his autonomy and the freedom to take the time he needed.
Now, it was my grandmother’s turn.
It’s a little different for my grandmother, she is no longer able to walk. She must be changed in bed, and if she is ever moved it’s by way of a hoyer lift. The last diaper change and turning for her took place just before 1AM that same night/morning. At each of these points, her position would be rotated, every two to three hours, she would lie either on her left or right sides or on her back. Upon checking her, I found that she didn’t need to be changed. I turned her on her back, adjusting her cushioning and pillows to accommodate. I took her hand, kissed it — and told her I loved her.
“I love you, Mi Amor.” She said, meaning “my love,” in her native language of Portuguese. Her voice, still audibly hers, but frail.
She quickly returned to a peaceful sleep.
Now, back to my grandfather on the commode. There he sat, engaged in a vacant stare forward, his feet swung below him frontward and backward as though he were a child with the slightest hint of a smile on his face.
He came out of his stare, and gave me a slight wave.
“Are you done, Grandpa?”
He nodded his head.
I wiped him thoroughly, pulled his briefs up, accompanied by a clean pair of pajama pants, and now it was back to bed, first for Grandpa, then for myself — work was still several hours away for me.
Thornton and Maria Cain are, for all intents and purposes, my parents — they are in actuality, my maternal grandparents. He has Alzheimer’s and she has vascular dementia, they are transitioning and likely not for this world much longer. This is the reason that at age 39, I have moved back into my childhood bedroom.
There are other reasons that I have moved back here, although as strange as this might sound — they are not all yet apparent to me. I do know that I am hot on the heels of walking down the aisle with an insanely gorgeous lady, who is more than my love, but my best friend. I am not oblivious to the bit of irony that before I begin the rest of my life, I am returning to the place where my life began, where I learned and with those who taught, reared and loved me in the best ways they could. It would seem that before moving forward, a trip down introspection lane is required — I just hope I have enough fuel to get there. It’s now my turn to be amongst those in our family who are doing the same for them as they did for us — to varying degrees, but that is another story.
My grandfather, Thornton, was born and raised in Madison, Georgia. He joined the Air Force at 21 years old and served for 20 years, during which he was stationed in the Azores, a region of Portugal where he met and married my grandmother Maria. My grandmother was 21 and my grandfather was 27 when they married in 1957. They remained in Portugal before coming to the United States, it would be his return and her first time visiting — an interracial couple in this country in 1962. They married roughly a decade before the court case of Loving v. Virginia. There was only a handful of places where they could lead relatively peaceful lives, definitely not free of harassment. They lived in Southern California, Anchorage, Alaska — where my mother was born, before settling in a small suburb of the San Francisco Bay Area adjacent to where my grandfather would work on Travis Air Force Base (my birthplace) until his retirement at the ripe age of 86. They have 6 children, three boys and three girls. I am the oldest of 18 grandchildren, and there are 5 great-grandchildren.
“It takes a village,” is a proverb that means that an entire community of people must provide for and interact positively with children for those children to experience and grow in a safe and healthy environment. I think the same could be said for our growing aging demographic. There are an estimated 44 million people worldwide living with Alzheimer’s or a related form of dementia.
My grandparents, unlike others who suffer their ailment, are fortunate enough to live in their own home that they have lived in for more than 50 years. Our small village of care providers does not consist of our whole family, but a small part of it. My aunt, who is my grandparent’s oldest child, and her husband, my uncle. Another of my aunts, who is my grandparents fifth oldest child, and my mother, who is my grandparents third oldest child.
Veterans Affairs provides 11 hours per week for a home aid to come for short shifts during the evenings. The person they provided is not a nurse and we love her rapport with my grandfather — but, much of the time, she needs our help. For whatever reason, the VA does not deem it necessary for my grandmother to receive the same care, she does not have a home aid and rarely receives visits from a nurse. We are left to our own devices, advice by phone from a nurse and the expertise of my mother and aunt who have both worked in patient care in the past. After the aid leaves, I pick up the night/wee hours of the morning shift until my mother comes to change, turn and feed my grandmother who is bedridden, and change my grandfather before leaving for work. I work from home and do what I can when I can during the day, but the brunt of the work in care has been maintained by my grandparents’ oldest child and her husband.
At the same time I am having a daily lesson in catharsis in trying to figure out why else I am here, what the meaning of our relationship is now and perhaps has been all along — I’m getting to see them, my grandparents, at their most vulnerable points — they beat a racist world, raised a large and beautiful family, to be licked by a neurological disease that is a slow growing threat to all of our lives, either directly by the possibility that we may go through this, or indirectly by caring for loved ones who are stricken by Alzheimer’s or some form of dementia.
The point of my sharing a day-in-the-life-of type of story is not exactly clear to me — like my journey ahead, it’s kind of hazy and I’m looking for my light at the end of the tunnel, for my peace and more importantly for my grandparents, and my family’s. I know that my family and I are not the only ones who have this type of story, hopefully, if you’re out there and reading this, you can see that you are not alone. We are all doing what we are doing for those we love, because the next person can’t, or won’t.
I’m also a personal witness to a healthcare system, in our case, governed by the VA that really provides very little for its veterans and even less to their spouses. Overall, we are a country that is woefully unprepared for a nation that says two-thirds of the population will be affected by Alzheimer’s and a related form of dementia in the coming decades.
I am my grandparents’ keeper, when they are scared in the wee hours, I try to hold my eyes open to comfort them, change them, feed them and try to ease their palpable fears — I am just one part of a small village in a country full of small villages trying to be the keepers of their loved ones. Sometimes, it feels like we are all on a bunch of spinning rods, at times it feels like it’s barely continuing to spin. Many rods spin out.
My question is, who or what keeps the keepers?