Conversations in lieu of an introduction
Neurologist’s report: Based on the relatively gradual, progressive nature of the complaints, the lack of other neurologic signs and the severity of memory impairment… This patient’s dementia is likely Alzheimer’s.
Mother: “That sounds bad. I’m not dying, am I?”
Daughter: “No, you just have a bad memory.”
Mother: “My memory is bad? My memory is wicked.”
………………………………..
Mother: “Can’t I just go home?”
Daughter: “Where is home?”
Mother: “That’s just it. I don’t know.”
Daughter: “We took you to the zoo yesterday, near where you used to live, and you had a great time.”
Mother, not recalling: “You mean I was there?”
……………………………………….
Mother, puzzled: “Are we related?”
Daughter: “Yes.”
Mother: “Are you my niece?”
Daughter: “No, I’m your daughter.”
Mother: “What? Are you sure?”
Daughter: “Yes.”
Mother: “So you’re my daughter and I’m your mother. Well, is that ever nice!”
The Other Side
Chapter 1
-Florida, 2001-
The Other Side of Her Door, by Billie
On 10/11, my sister and I peered through the screen, the portal of our 77-year-old mother’s Florida condo. Unannounced and uninvited, we turned the knob of the unlocked door and entered her little shop of horrors. What we saw would reveal to us a boogeyman named Alzheimer’s.
First, a foray into the kitchen uncovered a gallon jug of premixed Manhattans, two Kit Kat candy bars, a stale chocolate chip muffin, half of a banana and coffee. Practically empty refrigerator. No food staples meant no nutrition. What had she been living on?
We wandered into the living room, Mum there dressed in pajamas in the middle of the day, lying on her living room sofa under a thin blanket, eyes closed and hands folded over her chest. Dead people in caskets look like that. She smiled wanly, opened her eyes and began to realize she was not alone.
We drifted dumbly into her bedroom and felt fear for her as we followed a trail of dried blood that began with the disheveled bed linens, continued on the floor’s once white carpeting leading into the bathroom, and ended smeared on the toilet seat. She had been hemorrhaging from either the vagina or the rectum, and for how long we didn’t know and she didn’t know. And this was how, like the planes that pulverized the twin towers on 9/11, and at about the same time, Alzheimer’s slammed into our lives.
Laxative tablets shouldn’t have been in her possession, but there they were on her dresser. Her roommate and boyfriend Ian had assured us he’d remove or lock up all medication before he left on his trip to Scotland, and he may have. But upon questioning my sister’s in-laws, whom he had assigned to take Mum on weekly trips to a grocery store, we realized no one had aided or monitored when she “shopped.” She was on her own in the store. Who knows what she brought back with her.
But the horrors continued when the phone rang. It was “Sally.” I identified myself as Joan’s daughter. She identified herself as Ian’s girlfriend.
“You’re a friend of Ian’s?”
“Oh, yes. I’ve been going with Ian for two years.”
I felt afraid again for my mother. She and roommate Ian had almost married once. What had happened to that? Was it a sham all along? An arrangement? Ian lived with Mum. How could he and friend Sally not see her frailty?
"I wasn’t aware that Ian had another girlfriend,” I gulped. “I don’t know if my mother knew that, either.”
“Oh, your mother knows all about us. We take her around with us a lot. Last Christmas, we took her out to eat with us.”
So my mother had this secret. How could this have happened? And how could I not have known how sick she was?
---------------------------------------------------
Mum had never lived alone before my father died in 1990. If, after his death, she felt lonely or anxious–and she did–she locked up the Florida condo, grabbed her car keys and a packed bag and drove to Wisconsin, alone. On the surface, that behavior looked independent and strong, but she was acting on impulse and those trips were geographic escapes from grieving. My doorbell might ring at 11 p.m. on a Monday or Tuesday night, could only be Mum. I’d open the door. All smiles, oblivious to the hour or the fact that I had to report to my school at 7 a.m. the next day, ready to teach, she’d cheer, “Let’s have a drink and talk.” So I’d make the brandy old fashioneds and she’d talk–lots. A drive from Florida, alone, allows plenty of time for unexpressed thoughts to grow.
She would route herself north via Atlanta and through Chicago, and rain, sleet or snow didn’t stop her. So infamous was her link to bad weather, friends would ask, “Is your mother coming up?” knowing a yes answer pretty much guaranteed horrendous snow or rainstorms. After three days of visiting, Mum channeled her restless energy into the long drive back and the brief geographic escape refreshed her for the moment.
But in the years just before the Alzheimer’s diagnosis, little fender bender accidents, including one with a state trooper, became too frequent. Ian, whose job required frequent travel, worried more about leaving her alone. She drove alone to Sarasota to spend Thanksgiving with a favorite relative, got confused, turned around, drove home and didn’t call anyone. Not good signs.
Then this phone conversation in the spring of 2001:
“Billie, did I leave my suitcase there?”
“What suitcase, Mum?”
“You know, my black one. I can’t find it so I thought maybe I just left it there.”
“When?”
“Just now. Wasn’t I just there?”
“No, Mum, you haven’t been here in three months.”
Silence. My stomach knotted. This was a heartburn night in the making.
“Well, maybe I was having a dream.”
I hoped she was. That was me in denial.
Ian thought she was getting more forgetful. Prior to his leaving on a trip, he’d try to arrange for Mum to fly to Wisconsin for extended stays with me or I’d fly to Florida. That sufficed for a while; I had vacation time. But in September of 2001, he planned a trip to Scotland which would leave my mother alone in her condo for at least four weeks. Ian assured me and my sister that he had arranged for someone to administer her meds, take her shopping for groceries, and check in on her frequently while he and I would call her daily.
That arrangement did not work.
Ian called from Scotland; he said not to worry, “Your mother is all right.” But each time I spoke with her, she sounded weaker. When my sister’s father-in-law, who lived seven miles from my mother’s condo, called to say Mum’s electricity had been cut off because she hadn’t paid her electric bills–the yellow flag on her electricity box outside–Anne and I hastily arranged emergency flights to Florida with a return ticket for Mum. We’d bring her back to Wisconsin and initiate appropriate medical intervention.
……………………………
On the flight down, I pictured Mum and Dad’s four-unit condo development blended into a rural landscape that should have been called jungle glen. It included a large, shared outdoor pool surrounded by scrub palms, old oak trees, Spanish moss and climbing vines. I liked the muggy warm air and explosion of life in the middle of winter, even if some of the living were termites and snakes. The units were compact and attractive, two bedrooms and a bath and a half. Mum and Dad had one of the more desirable and sunny end units.
Impairment free in those days, Mum could rattle off the names of the area’s seven converging rivers: the Salt, the Homossassa, the Withlacoochee, the Crystal, the Halls, the St. Martins and the Chassowitzka. I felt a sense of loss already, that visits to this Florida place of many rivers and warm memories would never be the same or never be at all.
One neighbor with whom Mum shared camaraderie was Jenny, a divorced woman who owned the other end unit. Jenny dated Ian who at that time owned and occupied one of the inner units. He was a sports writer from Glasgow, Scotland, here on a work visa. When he traveled, which was frequent, Jenny pretended not to be waiting for phone calls, tried to maintain her dignity when, as the lyrics to the country western tune go, if the phone don’t ring, it must be him. After all, she had just bragged about how good he was in bed—she talked like that—and now he didn’t call. It was important to Jenny to “save face” as Mum said. Mum and Dad and Ian and Jenny actually double dated, went out for fish fries, and enjoyed extended happy hours. The relationship between Ian and Jenny was on and off again, but the group always stayed friendly. After Dad died of a massive heart attack, people advised Mum not to make any big decisions or moves for at least six months or a year. So Mum stayed in Florida and leaned on her two friends Ian and Jenny.
At some point, Ian divorced his wife in Scotland, but I’m not sure when. Mum went over seas twice with Ian and even out to dinner with the ex. He also had a Scottish “friend” Fiona who came to the U.S. to visit Ian, and Fiona, Ian and my mother chummed around like a little family. I don’t know how Ian explained these various women to Mum or how he explained Mum to them. I know Sally, the previously mentioned “friend,” seemed convinced that Mum was “like a mother to him.” Among an over age 60 group of unattached women, Ian apparently held considerable sway.
I didn’t understand it, the Ian/Mum relationship, in those pre-Alzheimer’s Florida days. My husband said they seemed more than just friends. In a bold moment, I gave voice to my questions, “Mum, are you and Ian romantic? I mean, is it boyfriend/girlfriend or just friends/roommates? What?”
Diplomatic by nature, British and jolly private, she replied, “I think it’s a little bit of everything.”
She’d have been giggling, too, if she could have read my mind just then—a childhood flashback, my fourth grade 4-H club days, raising checkered giant rabbits. My friend Lenore parked herself in front of my rabbit hutch to watch the drama of rabbits mating. The male rabbit mounted the female, bit her on the back of her neck and thumped around for a while, rather violently I thought. Lenore knew more than I did about such things; she was more advanced—had very big boobs already. She said the male rabbit puts his thing in her thing and that’s how they mate, just like people.
“Like people?” I protested. My parents would never do something like that, I hoped.
She did not relent. “Ask your mother if you don’t believe me.”
So I asked Mum and braced for an expression of horror, of Lenore being summarily banned from the premises. Mum giggled and told me I would understand when I was older. That’s how I learned Lenore’s unfathomable thumping-among-humans theory was fact.
Mum had charming ways then and still does of skillfully deflecting questions. She laughed when other people laughed, smiled when she was supposed to, etc. The Alzheimer’s didn’t change her personality or her appearance so both helped conceal her deteriorating memory. That’s how she kept her Alzheimer’s a secret.
But she had created an isolated world for herself, and that really began when she fell in love with and married an American GI, my father, in 1945. At age 20, Mum immigrated to America and that meant leaving her whole family behind. When Dad died, none of his family lived in Florida. All of Mum’s family, with the exception of a brother in Pennsylvania, lived in England and Scotland. Now her Florida world consisted of Ian and his friends. The two visited Ian’s golf friends in Miami, she accompanied him on his road trips to golf tournaments in California and Arizona, and at some point he moved into her condo and bought another one to generate more income. Now he owned two of the Florida condos and Mum owned (held the mortgage on) a third. Jenny had relocated. It was a sweet arrangement at first. Mum had his company and his help, financial as well as emotional, I thought; he had rental income, her company, and discounted room and board, I suspected. Just before Thanksgiving of 1999, Ian announced they were to be married, news received with some skepticism because of Mum’s advanced age and Ian’s track record. The plan was a civil ceremony in a courthouse in Florida, just the two of them. Then they would fly to Wisconsin to celebrate Thanksgiving and their wedding with us.
On the appointed day, Mum decked herself out in a white suit with a very short, not age appropriate skirt—her image of herself never aged—but she did worry about how others would regard the age difference between them, she later confessed. She should have worried about the state of Florida’s prerequisites for nuptials, among them a social security number. The clerk at the courthouse looked up the statutes and read them to Ian. Even glib, persuasive Ian had no effective defense. He was not a U.S. citizen and he needed a social security number.
The wedding didn’t happen but the Thanksgiving visit did. I trespassed on private territory by asking Mum if she thought she and Ian would get married later and she said, “He hasn’t mentioned it.” I felt that I had pressed on a bruised spot. It was none of my business, so I never asked her again; she never brought it up and they never got married.
…………………..
In April of 2001, Ian began to wean Mum off of the anti-anxiety drug Ativan. She had a legitimate prescription, but Ian suspected it was a cause of her confusion, her dependency psychological only, so without the supervision of a doctor, he “dried her out.” Mum shared none of this with me but Ian wrote:
This is not easy to write… I live in hope that Joan did not get like this in a day or two so maybe the mists will clear in a little while when the drugs are out of her system… She is now resting, perspiring (side effect) and pulled the shades to have the room darkened (another side effect).
In July of 2001, during one of Ian’s absences, I flew to Tampa and rented a car for the drive to Mum’s condo. Mum had not been feeling well, could be anxiety, maybe not. She had a long history of morning anxiety, accompanying nausea and trouble sleeping. I took her to a new doctor Ian located. He wanted no more of the doctor who prescribed Ativan. I mentioned her trouble with memory, and the doctor said sleep deprivation can cause memory decline, that memory needed to be jogged, but he didn’t order an evaluation. The doctor prescribed a sleep medication.
As the events preceding her Alzheimer’s diagnosis neared, we noticed, as did Ian, Mum’s befuddlement with finances, distress over the cost of new dentures and a new car, etc. Where was she financially? Ian wrote:
She can’t grasp things like my name is on her bank account—it’s because she always gets lost over her account—and I find all sorts of disturbing stuff like an application for money on which she has written the tele number and “no money” so God knows what was going on there.
My husband, a certified public accountant, offered to oversee finances for her but she declined. “I’m doing all right,” she said. So during my Florida visit, I took Mum with me to her bank, to see for myself what kind of financial mess she might be in. Ian had opened a joint account where Mum’s social security and small pension were deposited. From that account her mortgage, utility bills and other expenses were paid. The bank took charge—for a fee—of paying her master card minimum each month. The clerk said the arrangement would work as long as there were no overdrafts. But the bank paid the minimum balance of $33 a month of a $3000 credit card bill, so that balance would never be paid off and Mum was losing money each month. Mum thought the lady was “nice,” and she was glad it had all been set up for her. Mum had no knowledge of what investments she had, what her mortgage balance was, etc.
The paperwork trail suggested some borrowing against the equity in her condo. It didn’t show any deposits other than Mum’s social security and a small pension.
“Mum, does Ian split your monthly mortgage payment with you?”
“No.”
“Did he ever?”
“No.”
“Well, it seems like that would help. What would happen if you asked him?”
“I don’t know.”
“Are you afraid he would leave?”
“No, I just don’t want to make waves right now. I probably should talk to him about it, but not now.”
“What’s wrong with now?”
“I’m sick.”
“What do you mean sick?”
“I just don’t feel right.”
If she already was hemorrhaging, she wasn’t telling me. If she was really not feeling well, I would not know if the feelings were anxiety or something physical because she wouldn’t necessarily know herself. And then there is the possibility that she just did not want to confront Ian and being sick was an excuse.
……………..
When I suspected her lifestyle was beyond her capabilities (and I didn’t even know then about Ian’s other girlfriend Sally), I tried to entice her with the idea of returning to Wisconsin. But to her, that represented a loss of independence. “You’ve got family in Wisconsin,” I said. Of her nine brother and sister-in-laws, only Lee in Hodag, Wisconsin, and Louis in California still survived, but Mum could go out to lunch with the rest of us, the locals, like in the old days, we told her. She didn’t bite, told me she was “happy” in Florida and that she would let us know if she needed help. This was summer, my vacation ending soon.
“I have to go back to school at the end of August, “I reminded her. “Ian is going to Scotland sometime in September and you’ll be alone here. What if you’re sick?”
“I’ll cross that bridge when I come to it.” Mum admonished impatience when I was growing up. “The best comes to those who wait,” she’d insist. The sentiment is also an excuse for inertia. She would just wait for a crisis.
Prior to leaving, Ian called Mum’s clinic and described Mum’s symptoms. “Are you family?” they asked. No he was not. They told him he would have to bring in the family for this one. He knew, of course, that might mean Mum going back to Wisconsin. And that bitter pill he and Mum were not prepared to swallow.
…………………………………….
Flash forward to my October 2001 conversation with Sally. I wanted to hang up but just couldn’t end the conversation until all was revealed. I told her my sister Anne and I were taking Mum back to Wisconsin, that there was blood all over the place, she was so sick she could barely walk and appeared to have lost a lot of weight.
Sally said Ian and she both thought a great deal of Joan, that Ian had asked her to “check up” on Joan while he was gone and to help her pay her bills. “I asked her if she needed help with her bills, but she said no,” Sally defended herself. “She seemed all right [People with an Alzheimer’s afflicted loved one hate this ubiquitous comment]; I even took her out to lunch at Burger King. You know your mother doesn’t need medical attention. What she really needs is a babysitter….”
Then Ian called from Scotland. Sally must have contacted him and told him that my sister and I were absconding with his Joan. I told him that a stack of bills—two months behind in payments—sat on her kitchen table, and her electricity had been turned off. I described the scene in the bedroom and questioned whether anyone had even been in the condo for days if not weeks. And I added,” I didn’t know you had another girl friend.”
He denied that. Didn’t know why Sally, just his “friend,” said something like that.
Mum’s feeble position was, “I don’t care if there are other women as long as he takes care of me.”
………………………………
After we moved Mum to Wisconsin, in October of 2001, I, as her power of attorney, tried to close Mum’s joint bank account. First, I asked Ian to close it. He said he didn’t want to “stand in line at the bank.” He was feeling uncooperative, didn’t like my blaming him for what happened to Mum, didn’t like my making decisions for her without input from him. He did not believe she had Alzheimer’s—and he wasn’t the only one I would later learn. Of course, the bank wouldn’t close the account for me without the power of attorney papers, the original ones, a multitude of forms and back and forth correspondences. Finally it closed, we paid off her credit card debt, sold her condo, and were free of Ian- financially.
And Sally was wrong. Mum needed more than a babysitter.