This post is a draft in progress...
Death’s a sad Bone; bruised, you’d say,
and yet she waits for me, year after year,
to so delicately undo an old wound,
to empty my breath from its bad prison. -Anne Sexton, "Wanting to Die"
In a studio apartment decorated with all the charms of home, my grandmother sits high on her much coveted bed, with its fluffy pillows, and crisp blue and white flowered quilt. We’d always love to have sleepovers with her just to have the chance to sleep on that bed, soft, high, pillows piled like clouds! Not to mention the cookies…there were always cookies!
Now the bed reigns in this new apartment in a nearly new assisted living facility. It’s clean and bright, with family photos scattered across every surface: the faces of each of her seven grandchildren smiling from school portraits; the faces of her long-gone siblings, at least seven, from family parties and days of their youth in the Bronx. She has outlived most of her family, except for one sister at least ten years her junior now struggling with kidney failure. She has outlived her husband for twenty-one years. She has outlived nieces and nephews, who willed her their savings that is helping to pay for her care, here.
The room has at least six plants on the windowsill, and another in front of the door on a table. There is artwork framed on the walls, some professional, some by my cousins. There are decals of flowers on the wall next to her bed, and the wall near the door as we walk inside. It’s cheery. This room has been her home for the past six months, following a mini-stroke about five months prior to that. The room is in the Memory Care Unit for patients with dementia, or those who like to wander; many residents wear anklets to monitor their location. The doors to this wing are always locked. Only key visitors and staff have the special, ever-changing code to unlock doors to the main room with its grand fireplace, or the dining rooms, or the other wing where the mailboxes and other residents reside. There is a small courtyard near the common area in the unit, which allow residents to gather to watch television, or to take in some sun, or to do crafts in the nearby activities room.
This place smells faintly good with a side of urine, and impending death. Mainly, when we visit, it breathes hope. Of course, many people here do not have family left, or have family nearby to visit them, or check on their care as often as would be ideal. At our recent visit, my grandmother remarked how lucky she is to have so many people come see her, or call. She had just been released from the hospital after a bout of pneumonia that turned out to be much more.
My aunt and uncle, who now have power of attorney, live fifteen minutes from the assisted living facility. My mother and other uncle, who live in my grandmother’s home, (her primary caregivers) are two and a half hours away when there is not much traffic. I, the oldest grandchild, am about three plus hours away, and a few other cousins in New England are five or six hours away. Still, we are finding ways to manage the distance.
Assisted living costs: Independence with monitoring, room and board, a meal plan, activities, health services, physical and other related therapies, laundry…all bearing resemblance to college. Only here there are nurses to weigh you and make sure you are taking medication that you might otherwise forget, which then makes you refuse to take it because dementia and other neurological conditions confuse, make you paranoid, distrust authority. After her stroke, grandma often accused us of trying to poison her when suggesting she take her usual blood pressure pills, or later the medicine that was supposed to quell the onset of dementia and paranoia caused by the stroke. She never took it for long, even after all the tests, even after explaining it may have allowed her to remain in her home for a while. Realistically, at 87 the house had become a hazard to her, its stairs, its drafts, its carpeting, its suspect shadows.
After the stroke, we had to deadbolt the doors up high, so she could not wander out into the darkness and get hit by a car or forget her way home.
“You are locking me in like a prisoner!” She’d scream at my mother, or “I can’t go anywhere…you are all trying to kill me!”
She began hiding knives under the couch cushion to protect herself from us. She tried to hit my mother with the broom, or her purse, whatever was handy…
Realistically, you recognize that she did not mean it, and it was not her fault for fearing you irrationally. It did not make it hurt any less. I remember when she thought I had turned on her, too, another part of the conspiracy to imprison her. She glared at me, with furious tears, saying, “Not you, too! Why would you do this to me? You are all going to hell.” I said that was fine…I’d go, but that this was to help, not hurt her. I’ll never forget the disbelief on her face.
After the stroke, my grandmother had no sense of time. She would forget immediately when it was, even after you told her only a moment ago, “It’s 4 PM, almost time to start making dinner.”
She’d say to my mother, “Is it time to make dinner? Can I feed the dog now?”
She would ask what time it was, then look at the clock to be sure we were not trying to trick her.
She’d go to the windows at night, while we were watching television, or after we’d all try to go to bed. We’d find her staring out into the darkness, but she could not understand it was nighttime. She stopped sleeping, so we stopped sleeping. We knew we needed help.