The Day Everything Changed: A Journal of My Mom's Stroke

 Mom at physical therapy

"Mom, did you have a stroke?" I said when I came home to find her struggling to put on her prosthetic leg. "I'm just so weak, I can't do anything." "I think you're just exhausted from Thanksgiving mom."
 I struggled to believe that someone as strong-willed as my mother, who quit smoking and drinking after she had her leg amputated on Thanksgiving 6 years ago, could have suffered a life-altering stroke. Her mouth wasn't drooping, but her eyes looked strange. She wanted to join us in the living room to talk, but couldn't use her left hand to move her wheelchair. Then she held a seemingly normal conversation, but she just didn't look right. I told her I was going to call an ambulance. She pleaded with me not to and I said, "Mom, if I don't, and something is wrong with you, I'll regret it the rest of my life."
        After cooking Thanksgiving meal for 2 solid days, and spending hours cleaning it up by herself (she would never let anyone help) mom and I sat down in the living room and had a serious conversation about what would happen if, in her words, her mind went "blotto." We'd already talked over the summer about wills, finances and whether she and my dad were going to keep their house, the same brick home they'd bought in 1969 in the small, bucolic town of Croton-on-Hudson, 30 miles north of New York City. As I walked out the door after celebrating her 85th birthday, she said, "You're going to have to drag me out of this house, I'm never leaving." Ironically, a crew of fireman and paramedics did just that on November 25th.
        As we crowded around my mom, a tall bald man walked in the ER and introduced himself as Dr. Rossner. His presence was as comforting as that of my Jewish uncle. He showed us the cat scan and said she'd had a major hemorraghic stroke. He said that normally he'd operate to remove the blood, but her level of consciousness was so high that he said it may not be necessary. We opted not to have him core a hole through her cranium, thinking that at this age, brain surgery could have its own complications. As my dad stood by, obviously in shock, mostly checked out, I realized that the entire weight of this decision rested on my shoulders. At this point, my dad farts, clearing out the room. My mom uses her supposedly stroke- immobilized hand to ward off the odor. Dad says "It's a holocaust." (My family is extremely irreverent. Even in the worst of times, our twisted sense of humor gets us through).
        Mom spends the next week in the hospital, too weak to hold a conversation for more than a couple minutes before she drifts off into an incoherent, mumbling state. Lawrence, my adopted brother, who spent Thanksgiving with us, said that she'd suddenly become an old woman in an instant. Although my mom drank heavily and smoked most of her life, she has a remarkably youthful quality to her. Her hair, jet black and never dyed, is a freak of nature. Now she lies in a hospital bed, unable to sit up, her face drawn and her eyes drifting in their sockets as if she were grasping for reality. Suddenly, I'm thrown into the realm of eldercare. We have to sign a Power of Attorney in the hospital so that my dad and I can take control of the finances. She scrawls her initials roughly on each line, unable to control the pen without us holding it for us.
       After she's released from the hospital, my dad and I walk into Cedar Manor Nursing Home in Ossining, New York where mom is placed for rehabilitation. One hundred people over age 75 sit in wheelchairs around a glass walled courtyard clapping to Christmas tunes. A rotund Santa runs around from room to room wishing everyone a Merry Christmas.

Santa Comes to Cedar Manor

 Mom is oblivious to the senior activity of the day, drifting through space and time alone in her room and her thoughts.

         Ann Joseph is an introvert, a woman who spends day after day in the corner chair of the living room reading through stacks of New York Times, playing Sudoku and crossword puzzles, and sorting through her ancestors' memorabilia. After 2 days, she already hates the nursing home. She says that the Jamaican nurses take great pleasure in throwing her around and force-feeding her. A couple days ago, she told me about her plan to get up and walk out of there. In her own version of the Shawshank Redemption, she said she imagined how she'd use the food cart to pull herself out of bed, then she'd hop on her one leg rolling the cart out of the building. But, she said, the plan would take half a day to conjure, and by the time the food cart came for lunch she was too exhausted to pull it off. Because the stroke left her confused, the speech therapist and social worker always tested her to see if she knew what day and month it was. One day I asked her if she knew the name of where she was staying. She said, "Shithouse."
        Raised by a strict Southern stepmother, my mom wasn't inclined to freely curse unless provoked to anger, usually by my father's ineptitude at mundane tasks. His ability to lose his keys, or his train of thought at any moment, is a source of both amusement and consternation for her.

Dad on the steps of my childhood home

One effect of a stroke in the right frontal lobe, according to a psychiatrist friend of mine, is a loss of inhibition. Not only was her sarcasm on full display, but also her ironic sense of humor, as she would often look straight into my eyes and utter a throaty, gutteral chuckle when she was amused by something I said. Although her memory is intact pre-stroke, she now imagines fictitious events. For the first 3 weeks after Thanksgiving she believed that my dad was taking a round trip flight to see her everyday, when in fact he drives 8 minutes from their house. One day she asked me if I'd ever seen the movie Trainspotting. She said they had a Trainspotting club at the nursing home and that a train ran from there to downtown Ossining through exactly 16 grade crossings. I went along with her imaginary train line. The social worker at Cedar Manor told me the best strategy was to acknowledge the fantasies or imaginings of a person who'd been through such a trauma, as opposed to arguing against their new reality. She'd also insisted that a cat was chasing a mouse under her bed at night, and that there was a lot of wildlife at Cedar Manor.
        Cats and trains are both dear to my Mom - when I was a small boy my grandfather would take my mom and I to see the antique train cars come through her childhood town of Maplewood, New Jersey. I still have the small gauge railroad set he gave me when I was 2, that we always set-up around the Christmas tree. My mom has had cats her entire life, until her 19 year old cat Mel died last year after withering away to nothing. She is the first to admit that she communicated a lot better with cats than with people.

February 27

       My Dad and I walk through the labyrinthine corridors of Cedar Manor on my way to see mom. He says, "Isn't her room number 2018?" I said, "no dad, it's 218, you added an extra number". He says, "I thought that way she'd have extra space".  My mom talks for over an hour about the day my dad proposed to her and about her childhood with her cold and unloving stepmother. She's never communicated like this before. Now that she's been lying in bed 21 hours a day for 3 months, her mind is free to roam through her life story, as if she were authoring a mental memoir. There is a common idea that when one dies, their entire life flashes before their eyes. But my mom's process in approaching the inevitable is a long, slow mental inventory. In the past few days she's been telling us that we should sell the house in Maplewood that she sold 30 years ago when her stepmother died. But in her mind the past, present and future have merged. She believes that we sold the house in Croton along with all the furniture, and gave away everything else. The humble brick ranch they bought 44 years ago is a museum of memories from a life they can no longer inhabit.

Mom and Dad's Wedding Day: San Francisco City Hall, 1959.

        My dad proposed to my mom on the rooftop of an art deco hotel in San Francisco in 1959. He'd asked his mother permission if he could marry her, since she was a Shiksa, or non-Jew. She told him that he should follow his heart. His dad, who was rigidly orthodox, threatened to have a nervous breakdown. My uncle tested my grandfather to a greater extent, when he married a black woman. He refused to acknowledge her for 7 years, but eventually relented, spending his last years in the care of a black Jamaican nurse. My mom related that both she and her own mother found "the man of their dreams" late in life. In her generation, marrying at age 32 was late. In her mother's generation, it was ancient. Her mom Lucy was a small town girl from Fairmont, West Virginia who came to New York to study interior design. Lucy met Frank, my grandfather, at a party in Manhattan in the 1920s and married 6 weeks later. Their love affair ended shortly after my mom was born when Lucy died at age 33 from pneumonia. My grandfather was panicked to find someone to help care for his infant daughter, so he went back to West Virginia and proposed to his late wife's best friend, Virginia, who was wheelchair bound from polio. Virginia had a "my way or the highway" attitude and thought that my mom had to be reigned in. My mother tried to run away from home once, so my grandfather took her fingerprints and gave them to the police so they could locate her if she ran away again. Mom says she's always been stubborn, willful and ornery - it is these qualities that have made her the rock of our family, and enabled her to overcome tremendous physical obstacles at this late stage in her life. But now, her spirit is willing, but her flesh is not.
        Medicare pays for 100 days of nursing home care and mom is approaching that number. In her care plan meeting today, in which the physical therapist, dietician, speech therapist, head nurse, social worker and occupational therapist met with us to discuss my mom's progress, my heart sank when I saw their faces. Although mom has made significant progress in 3 months, she is still too weak to get out of bed without the help of the mechanical lift. We had hoped she'd be back home by now with a home health aide to assist her. Her only complaint at the meeting was how bad the food is. She offered me some of her lunch to prove it. I tried a bite of a gelatinous yellow mound that tasted like squash flavored jello. I grimaced and my mom cracked a crooked grin as I commiserated with her distaste for the food. She can only eat pureed foods as the stroke has affected her ability to chew and swallow. True to her stubborn nature, she went on a hunger strike and refused to eat any of the glop. Everyone tried to help her see the connection between nutrition and her ability to get stronger, but she still refused. She had a feeding tube inserted in her stomach 3 weeks ago, but the added nutrition did little to help her strength.

February 28

My dad and I drive back from a great meal in a new French-Moroccan restaurant in our little village. He doesn't usually drive at night, but he can't figure out how to dim the brights. We sit in the driveway for 5 minutes and I go over the sequence of parking lights, to brights to flashing brights over and over again. What is intuitive for most people driving a post 1980s vehicle becomes confounding to him. Yesterday on our way to Cedar Manor he forgot where we were, his mind Tabula Rasa in the middle of a highway. Our conversation went like this:

Dad: If mom hadn't had the stroke we'd be in heaven now. She'd be gardening and doing the things she loved.
Me: At least she doesn't have Alzheimer's but I'm not sure about you.
Dad: I forgot I didn't have it.

Mom and Dad in front of the Hudson

Today we took mom outside for the first time in 3 months. I pushed her wheelchair to the edge of the parking lot where the view of the Hudson River was optimal. She noticed the one blue patch in the sky and watched it drift amidst a sea of clouds, the calm grey river below. I'd always hoped she'd spend her last years somewhere with a view of the river; she commuted to Manhattan on the train for 30 years, taking copious notes of the wildlife and nuances of the river in her journal. She asked me that when she dies, she wants to be cremated and her ashes scattered into the Hudson.
        After my mom's care plan meeting, and my dad's recent mental lapses, I decided today that it is time for them to sell the house.

March 1

Assisted Living facilities have proliferated across the nation in the past 3 decades as America has become increasingly geriatric. AARP estimates that nearly 8000 people turn 65 everyday. My dad and I visited the Atria-on-Hudson complex in Ossining, a town named for the maximum security Sing Sing prison which still operates today. Like prison, Atria offers 3 square meals a day and a dry bed to sleep in. Unlike prison, Atria is a palatial and immaculate facility with an in house movie theater, heated swimming pool, gym, physical therapy center, 5-star chefs and a dizzying schedule of cultural activities. My dad loved the place - I felt a momentary sense of relief that my parents could be ensconced in a swanky senior dormitory for $11,000 a month while I lived 2000 miles away knowing they were safe and secure. The problem with most Assisted Living facilities is that the residents don't get younger or more wealthy. One fall could lead to a disability that disqualifies them for the limited and expensive care packages that only offer nursing assistance during the day. Once a family runs out of money, Medicaid (the government program that cares for you when you are broke) won't pay for Assisted Living.

Mom in the Buick, 1980

         The irony of thinking of moving my parents to a place like Atria is that they've lived as if they were poor for my entire life. Our wardrobe was furnished by the thrift store my grandmother worked at in Long Island. My mom wore her deceased dad's tattered plaid work shirts and my dad gave himself choppy haircuts with a razor comb. One time my dad and I were driving into Manhattan when he zigzagged though side streets in Yonkers to avoid a .25 cent toll on the Saw Mill Parkway. When April 15th came around my mom's anxiety about paying taxes spiked to a soul-splitting level. My folks always bought the cheapest beater cars including a '63 Pontiac Bonneville with bald tires that was as long as a yacht and that I later crashed on a rainy day as it had no traction. My mom kept her father's '65 Buick until 2010, when it was so badly rusted that it wouldn't pass inspection. Last year, my parents leased a brand new Honda Accord and my dad went to a barber for the first time in 40 years( he looks great with his $15 haircut). While mom and dad skimped and rarely went on vacation, they stashed away all their money in CDs, IRAs, blue chip stocks and annuities. They've earned the privilege to have a bit of luxury in the twilight of their lives.

Dad plays at the Blue Note, NYC, 1983

        My father would benefit greatly from a community environment in which he could re-engage in life. In the 3 months my mom has been at Cedar Manor, he has become increasingly anxious and withdrawn. He spent years playing in Jazz clubs in Manhattan and living a hedonistic and extroverted life. Now he shuffles along, stooped over from lack of exercise and hours of disappearing into the couch napping, reading and watching T.V.  Many of his friends have died or live far away; he stopped going to the Unitarian Church in town where he was intellectually stimulated by the sermons.
       Today at Cedar Manor, mom reached for my hand and said "what would we do without you?" I said, "Six years ago we had a crisis and you came through it better than anyone expected". She said "maybe I should have died instead of wasting all our assets". I told her we haven't spent a dime yet - Medicare has covered everything so far.  She swears she watched movers pack a van full of  furniture to move them from Croton to Florida. I said mom, " you don't want to go to Florida". She said, "I hate Florida. There's more thunderstorms than anywhere in the country. There's mosquitoes, alligators, boa constrictors, terrible weather and oppressive heat - and the guy who died when his bedroom fell into a sinkhole".

To Be Continued