Novelist | Singer
Taking in a parent includes all of their stuff, and old people have a lot of it. In Mom’s case, I didn’t really mind, because she has some cool stuff she inherited from generations long gone. We incorporated her furnishings into our living space so she would feel at home. A couple of years prior, we had traded dining room sets when she moved from her house, as her new apartment was small. Her dining room set that came down through the family generations includes a buffet and side board, queen and king chairs, etc. In other words, nothing I would ever have been able to afford.
That dining room set is my pride and joy. I grew up eating at the table. There are many days even now that I look at the furniture and swell with gratitude. The color and structure, the intricate carvings bring to mind a time long gone. Seven leaves gave the table a capacity of twenty-two many Thanksgivings in the past.
When Mom moved in, she brought other things; an 1885 kitchen clock, a tea cup collection and a Tiffany-style lamp which had belonged to her grandparents. All of the furnishings fit nicely into our condo, but until I adjusted, I could swear I was living in Mom’s house.
Every morning, Mom would shuffle quietly into the kitchen for her coffee, her fleece robe drawn up tightly around her neck. She was always cold. After spilling coffee all over the counter (she never learned to negotiate our coffee pot), she would shuffle into the living room and sit quietly at one end of the sofa.
“Good morning,” she would say quietly.
“Good morning, Mom.”
“What day is it?”
“Oh. It looks cold outside.”
“Yeah, I think it’s about 40 degrees.”
She sipped her coffee and sighed.
“Ahhhhhhhhh! This coffee is so good!”
“What day is it today?”
Sitting in that living room, gazing past her grandparents’ furnishings, out the window to the large silver maples in the adjacent yard, time became a blended gel of reality. The visuals were all in place: Mom grew up in Norwood Park in Chicago, a neighborhood with huge trees. Her grandparents lived on Bosworth Ave., also with big trees. And inside that house, the same kitchen clock, teacup set and dining room furniture.
Almost every evening she went down with the sun. I soon realized that she was about ten years old in her own mind. She spoke of her parents and brothers in the present tense, and often about staying overnight.
“Am I staying here tonight?”
“Where am I staying?”
“Your bedroom is in the back on the right.”
“Oh.” She would think about this for a moment. “Do my parents know I’m here?”
“Yep. They called about 5 minutes ago, and I told them that you would be staying with us.”
I never did figure out who she thought we were. She knew that she was my mother most of the time, but sitting in that parlor of her past, she would return to around 1935, when the World’s Fair came to Chicago, and her family spent many weekend days on Bosworth Ave. with numerous relatives. Maybe she thought I was her grandmother at those times.
Alzheimer’s training had taught me to go with her reality. Sometimes it was fun, because I would learn all kinds of things about Mom and the person she was before she met Dad. Sometimes it was exasperating, fielding the same questions over and over again. And sometimes it was downright scary.
Perhaps about the second week that Mom was with us, my husband woke me out of a dead sleep about 7:30 a.m. with, “Barbara, wake up! Your mother’s gone and the dog’s gone too!”
Gone?????? My heart started to pound, then, I swear it stopped. I rolled out of bed as fast as my healing back would allow and hurried to the window to see pouring rain but no Mom, and no dog. It was already fall, so it wasn’t particularly warm outside. I hobbled down the stairs and out the front door, pulling on my jacket.
I didn’t know which way to go, but I checked the yard first just to be sure. It didn’t take long to find them. Mom was standing (fully dressed with her coat on) almost under the front deck in an attempt to get out of the rain. The dog (my dear Lila) was standing right beside her with the most quizzical look on her face. It was something like Thank goodness you’re here, Mom. I tried to follow the old lady ‘cause I knew she shouldn’t be going out alone. Now, you take over. Her eyes shifted from Mom to me and back to Mom.
My gasping breath sounded frantic at that point, and I was trying to stay cool, so I took a breath and said, “Mom, what are you doing?”
“I’m waiting for Frank Delaney to give me a ride.”
They were both soaking wet. Mom actually had water dripping from her nose. So did Lila. I took her arm gently and said, “Let’s go back inside. You’re all wet.”
“But what about Frank? He’s coming to pick me up.”
“I’ll call him and tell him that we’ll take you.”
Who the hell was Frank Delaney? And where was he taking my Mom?
We went back upstairs and I got her into dry clothes. I toweled Lila. She looked confused, too. Al came into the kitchen and we just stared at each other. There was really nothing to say. Mom had been a wanderer in Indiana when she wanted out of rehab, which was logical. I would leave rehab too, if I could. But it never occurred to me that she would want to leave my house. The real complications had begun.
I waited until that afternoon so that Mom would not make a connection which might cause embarrassment, then asked, “Hey Mom? Who is Frank Delaney?”
“Wow, I haven’t heard that name in years!” she said.
“Well, who is he?”
“He lived in our old neighborhood in Norwood Park. He used to pal around with my brothers, but he was older than they were.”
“Oh. Did you ever spend time with him?”
“Me? No, he was a lot older than I was. He knew my brothers mostly.”
Alzheimer’s is a strange and mystifying disease.
I have discovered in life that when you are in difficulty, there are all kinds of blessings that pop up from nowhere to provide respite. You simply have to anticipate them and recognize them. There were facts and fears coursing through my head the first days that Mom was living with us. I had never done this – we had never done this, neither my husband nor I. What would we need?
Soon after we moved her into our house in September, I discovered November is National Caregiver’s Month. I didn’t know that until I made a call to Senior Care in Gloucester that first week, when I was still terrified with the knowledge that my mother was living under our roof. The rep from Senior Care was . . . fabulous. She spent four hours with me and listened to all my fears and inquiries, because of course, she knew exactly what I was talking about. This was not just a commiserating friend or relative offering input, but a professional sharing advice surrounding a challenging situation. She booked me immediately into a Caregivers’ Conference in November, and even paid the registration fee. She enrolled me in another workshop for caregivers that ran for four weeks. She was patient and understanding, the perfect advisor in this traumatic chapter of our lives.
I knew I needed help. I had Al, of course, but I was my mother’s child, her Health Care Proxy and Power of Attorney. I assumed from the outset that it was my responsibility to care for her. When I was available, the onus was mine. Al became the watchdog in my absence, quite willingly and without complaint. In a later chapter, I will share his commitment to my mother and what a fabulous job he did taking care of her.
The conference and workshops were as resuscitating as oxygen. By the time they rolled around, we had had Mom in the house about a month, and I was about to commit myself. There are many difficult aspects of Alzheimer’s, but the worst for me was the interminable repetition. I learned later that this can indicate the victim’s recognition of their condition, so they constantly check in. Whatever it was, it drove me to drink—literally. Being a little inebriated added humor to our circumstances, but always made the next day much less fun.
Every conference participant was a caretaker. Even without speaking to anyone, I could feel the weight of responsibility entwined in love swirling around the room. The keynote speaker was unbelievable. We laughed our guts out at her accounts with her grandmother; entering and leaving the room repeatedly to hear the same excited, “How is my best girl today?!” during an especially rough work day. Sharing a belly laugh with total strangers about a subject so painful was cathartic, true, but I needed tools, and she fulfilled that need as well.
Tools are essential to everyone, every day. Tools give us strength, resilience and a sense of forward momentum. But rarely are tools brilliant beyond description—like this speaker’s. This tool was especially dazzling. She said, “Challenge yourself to answer the same questions with new answers every time. For example, when they say, ‘What time is it?’ you are allowed to tell the time only once. The next time, you must provide a different answer, like, ‘It’s time for tea, don’t you think?’ The reaction to that question will certainly be, “Okay!” In that way, you domino them away from the time question, and soon they forget to ask.
The reason it works is because our “logical” brains (okay, maybe not mine) are hard-wired with reason and judgment. We simply can’t escape that basic function, so, regardless of our intentions or level of patience, the repeated questions make us insane. The resulting vicious circle is punishing:
Mom repeats something for the 5th time, and finally daughter snaps at her, albeit gently. Mom looks hurt and says something, “OK then, I just wanted to know!” Daughter feels guilty until Mom starts in again repeating something else. Wash, rinse, repeat.
Believe me, it’s not fun. It’s not even funny. And it’s constant. I was also in chronic pain from my back surgery. It was truly the hardest time of my life, but I kept trying to remind myself that it was such a good thing I was doing and that I would have no regrets at some point in the future . . . but for the present, it was our grim reality.
Mom is no longer living with us, in fact, at this writing, it’s been almost three years. I have nearly erased the numbing feelings of frustration from my mind. I look back on those days with warm memories and try to remember the funny and sweet. I couldn’t have done it without my husband, Al. What a trooper. Not many guys would do what he did for me and my Mom. I don’t know what I would’ve done without him – most probably I wouldn’t have taken my Mom to live with me. As it was, we settled into a tag-team routine, and we never talked to each other or spent any time alone together during her stay.
If you find yourself faced with the challenge of Alzheimer’s, be assured of one thing – you can’t do it alone. You shouldn’t even try. Reach out. It’s amazing how many organizations and agencies there are out there to help you through what has to be one of life’s most challenging situations. Be mindful of your spouse or your children. Alzheimer’s is truly baffling. It makes no sense, and can be crippling to emotions and relationships.
Don’t get me wrong; I have no regrets. I’m so very happy that I took Mom in. It became one of the most important times of my life. I got to know her as the person she was before she met my Dad. I’m also very happy she now lives in a place where trained professionals are looking after her and keeping her safe. I miss her, every day. I miss the person she used to be before the Alzheimer’s, but I love the person she is.
I jumped out of bed (more like groaned; remember, this was just months after my back surgery) the first day Mom lived with us. We were taking care of Mom! This was the ultimate gift to a parent, and right when she needed me most. I was the dutiful daughter. We would make our home the perfect place for her, and create memories that would last a lifetime. I was also terrified to my toes. Mom comes from a family of long livers. Her grandfather made 97, her own mother, 94, and her brothers 95, 93, 93. Mom was only 88, and a woman to boot, statistically destined to live longer than the men in her family. This living situation could go on for a while, and every time I thought about that, my heart quickened and my face reddened with guilt. There was no other approach but one day at a time. I later found out it was more like one hour at a time.
The room we planned for Mom was the office, so our first day included moving furniture. We jammed our desk into the corner of our bedroom, then carried armfuls of clothing, boxes, a small desk, several lamps, linens and chairs up 27 steps to squeeze all of it into 1,200 square feet – and that’s total square-footage of the condo. By the afternoon, we were exhausted and crammed into our new situation, but happy as we settled in for happy hour.
“Welcome to our home, Mom!” We toasted her on the back deck with gin and tonics.
“This is really nice,” she said. It did feel nice. It felt right, too. We were still in the courting period of our new living situation, and everyone was on their best behavior, and trying to make everything special.
Dinner was special, as I remember. We must’ve eaten lobster, as it was Mom’s favorite. Al, the chef of the house, had us set the table and then sit there as he brought in the plates and served my Mom first.
“Whooooooo!!!!!” she exclaimed. “Lobster, my favorite!” Then she said the fatal thing that would become a sore point within a couple of weeks—or was it days? “That’s too much for me!”
“That’s OK, Mom, just eat what you can, and I’ll eat the rest,” Al said.
Lobster as you know, is roll-your-sleeves-up eating, so we just put newspaper all over the top of the table pad (no table cloth required or desired) and try to hit the big bowl with the water and the shells. Mom’s a Midwestern girl, and so lobster is sort of, well, an exotic food for her, although she’s eaten it, in fact, here in our home plenty of times. She picked up the lobster and tipped it the wrong way, and yeah, you guessed it, water all over the place.
“Marge!” Al barked. “Here, let me do it.”
“Oh, I’m sorry!” she said, and dropped her head. Al took the lobster impatiently and proceeded to pull off the legs like a nasty boy on the playground. “This is how you do it,” he said.
I just looked at him as he ripped the bug apart and emptied the water into the bowl.
“And the water goes in here,” he growled.
“OK, I’m sorry,” Mom repeated.
I was still looking at Al. Finally he glanced over and said, “What?”
“What? What is wrong with you?”
He just ignored me and dove into his lobster.
So we descended into the lobster-eating ritual—plenty of cracking, lip smacking, moaning and slurping while our hands slowly became a sticky mess of arthropod fat. Mom is very vocal when she eats or drinks, and then, well, there’s the Alzheimer’s, which removes all the filters that might have been in place at some point. She wears dentures, as do most people her age, and let’s face it, lobster is a chewy little bugger, so to speak. At a certain point, she had gotten all of the nutrition out of whatever was in her mouth, and she reached up and took the chewed food out and put it back on her plate. This was not the first time I had seen this, but I tried to ignore it all the same. Al made a face and put his hand up to block his view of Mom’s seafood. I frowned at him and returned to my own bug.
After dinner, I let Mom carry the dishes into the kitchen (something I never was able to stop, so I just held my breath and hoped she made it to the kitchen with my heavy plates) and took over the cleanup. I squeezed out the sponge when I was done and went back into the living room, and there was my Mom in her robe—parked right in my place on the sofa, watching TV with Al.
“Hi!” she said. “Come sit down.”
So for the foreseeable future, I was relegated to the opposite end of the sofa. I suppose I could’ve claimed my spot, because I know she didn’t usurp it on purpose. She looked for a good spot, and sat down. It didn’t seem right to move her. I really wanted her to feel like she was at home here, that this was her sanctuary as much as it was ours. I didn’t know yet how much she would be able to remember from day to day, and I didn’t want to start opening those doors quite yet. Besides, I had plenty of time to move her when she got a little more comfortable. She was my Mom, and she could have my seat if she wanted it.
The next day I had an appointment with Mom’s financial advisor. Dennis was a trusted family friend as well. He had known my mother for twenty years. He listened quietly to my story, then said something that would change my life, and my relationship with my Mom.
“You know, you should consider taking your Mom to live with you. Legally, she can pay you for her care, and no one can provide the kind of care you could for her.”
I was frozen in place. Seriously? How could I possibly take my mom to live with me? Suddenly, I was the daughter whose mother lived with them, slippers, robe, shuffling back and forth to the bathroom. I could feel my legs start to tremble. I had just had major back surgery. This was too much. I thanked Dennis and left.
My brain was Jello on the drive back. How could this be happening? On the other hand, how could I take my mom to a place she had never been, drop her off and drive away? I lived 900 miles away in Massachusetts. But the decision was not mine to make alone. There were three of us involved. I called my husband, Al.
He listened to the news I’m sure he didn’t want to hear and then said something remarkable.
“So, what do you think?” I asked.
“Bring her home,” he said. Those three little words were like a magic salve for my heart. I had never loved him as much as I did when he uttered them. I could feel my temperature start to rise and my heart racing against my ribs. It was like I had been plucked out of my reality and plunked down in someone else’s. I was elated and terrified at the same time. It was so brave of him, but I knew in my heart that he was right. Dennis was right too. No one could give her the kind of care that I could, even though I wasn’t a caretaker by nature. I didn’t have kids, had never cared for a sick child or an old person, had never even been a candy-striper. But I was her daughter; in fact, her only daughter. No one would care about her as much as I would. I stiffened my back and tears rushed into my eyes. It was time to be an adult. Time to grow up.
The next several days were a complete blur. First, there was Mom, who really had the last word on the matter. This was the most difficult part for me. I knew that I wanted to shelter her from the words “dementia” or “Alzheimer’s,” although no one had said that yet. I sat her down in her apartment.
In the preceding three days, I had been introduced to a person who was not quite my mother, but yet my mother all the same. She looked exactly like my mother, but there were things that had changed about her. She seemed absent in some way. She had a child-like air about her, like suddenly, 80 years had been taken off her age. I knew I had to temper my approach. At the same time, I had to make hay. She owned an entire apartment full of stuff – bedroom set, dining room set, hide-a-bed, kitchen full of dishes and cookware, pictures on the walls, clothes in the closets. I was glancing around, knowing that would be mostly my job. My impatience simmered just under the surface.
“Mom, we have a decision to make. The Rehab unit said you can’t live alone any longer. So we can either move you to another place or you can come to live with me.”
“I want to stay here.” She looked down and slowly picked at her finger nails, then looked back up at me.
“Mom, that’s not an option. Either we can move you to another Assisted Living place, or you can come to live with me. Those are the only options.”
She dropped her head again.
“I want to stay here. I’m fine.”
“Mom, you can’t live alone anymore.”
“Because you have trouble remembering things now, and it’s not a safe situation for you.”
”Ah, phooey,” she said. (I’ve always loved that word. I smiled a bit.) “Who said that?”
“The Director of Rehab. They told me that you can’t live alone anymore, so we have to move you. Now there is a choice: we can move you to another assisted living place, or you can come to live with me.”
“Why can’t I just stay here?”
I was getting frustrated. Little did I know that this was just a taste of things to come.
“You can’t stay here. The Director of Rehab told me that during their assessments, they decided that you shouldn’t be living alone. So, do you want to move to another place in Ft. Wayne, or do you want to come and live with me?”
I paused and put my hand on hers, and she looked up at me.
“Mom, I want you to come and live with me. So does Al. He said on the phone that he wanted you to come and live with us.”
“I guess I want to come live with you then.” It was settled.
When I look back on it, this was one of the most difficult conversations I had with her surrounding her condition. She always made it easy for me, as was her style. I had anticipated resistance, or the demand for an explanation about what was wrong. She never put me through that. All I had to share was, “Your memory isn’t too good anymore, so you can’t live alone.” Perhaps she just didn’t have the capacity, or perhaps she knew more than she was letting on. This came up again and again in our journey through Alzheimer’s. She seemed to have the sense that she wasn’t all there and needed help, because she accepted it so gracefully.
Mom did have one test to pass before we could think about bringing her home. We live up 27 stairs, and Mom was 88 years old and recovering from a hip replacement. She had to be able to climb those stairs or she would be trapped in our house once we got her there. I took her down the hall and said, “OK, Mom, now when you see your doctor, you can’t tell him about this.” Sometimes, loss of memory is beneficial. I took her cane away from her and put her hand on the hand rail.
“Oh, boy,” she said. “I don’t know if I can do this.”
She looked up the stairs with trepidation in her eyes.
“I just want to make sure you can climb stairs, Mom. You don’t have to go far, and I’ll be right here.”
She slowly lifted her good right leg, placed it on the next stair, and like nothing, pulled herself up. One by one, she climbed the entire flight of stairs, gripping the handrail like a baby bird, struggling for balance. I was cheering her all the way. At the top, I turned her around, and she descended the stairs with the same amount of ease. She was ready.
I started packing that day. This became the second time I moved my mother. Two years earlier, I had moved her into Independent Living from her house of thirty years. Oh, she had been resistant, but only for a short while. My mother adapts well. Thank God.
I was largely on my own with the packing. Mom just couldn’t help that much. She sat in a chair reading a magazine, or followed me around as I sorted and folded clothes, trying desperately to establish the pile that would go to the Salvation Army.
“I like that shirt. Let’s keep that one.”
“Mom, you can’t take it all. You won’t have a big closet at my house, so we have to pare down a bit.” I felt like a cruel parent. I started waiting until the afternoon when she fell asleep for a reliable hour or so, then I would fill garbage bags with clothes and set them outside the door.
Some of the journey was fun, and would have been better if I had been able to get out of my own way. I was so freaked out about the enormity of the task and getting it all done, that I forgot to wax nostalgia when I could. I realized much later, for example, that I had left her button tin in the apartment. Her button tin. Do you have any idea how many years are amassed in one elderly woman’s button tin? My reasoning at the time (when I wasn’t in a clear frame of mind) was that Lutheran Life Villages (my mom’s independent living facility) said they would deal with anything we left there, and I figured that all the women there would be thrilled to get a button tin from my Mom. I hope that was the case, because I’m still sick about that button tin. And these are the things that we remember.
My brother Jon was moving to Ft. Wayne from Phoenix, AZ to take a new job, just as we were moving my Mom to Massachusetts. That came in handy for both parties. He took the furniture, so it worked out amazingly well. I’m sure he felt a little abandoned, and she was confused.
Packing, packing, packing. We all know what that feels like. Packing, packing, packing, packing. You can never have enough boxes or newspaper or bubble wrap, whatever your chosen packing material is. And for those of you bubble wrappers? Newspaper is just as good. Honestly. It compacts better, and it’s easier to crumple than bubble wrap. AND it saves you a bunch of money. Well, a bit of money. But I was raised in the Midwest, and we’re really good at saving money.
Just as I would feel we were done with something, I would open another closet or visit the storage cage she had in the basement and realize I wasn’t even close to being finished. Altogether, it took about three days, but it seemed like weeks. Meanwhile, my husband Al had packed his own bag and started the long two-day drive from Massachusetts to come and fetch us. He stayed with friends in Pennsylvania halfway, and the next day, arrived to our chaos. Having him there was wonderful. He is my monitor. Without him, my German persona just takes over and pushes me to work until I topple over. That’s the way it had been until Al arrived. I was already emotionally strained and physically exhausted, but when the monitor came on the scene, I started resting more. We went out to eat. We had some fun at least once a day. We rented a trailer and packed it full.
Then, suddenly, we were done. I finalized paperwork with the facility. Jon was planning to stay a couple more days and finish moving the furniture out of her apartment, and we hit the road early one morning and headed east.
I saw the movie “Forget Paris” with Billy Crystal and Debra Winger a long time ago, and much of the plot escapes me, but I do remember in detail the scene where William Hickey (Debra Winger’s father Arthur) is riding in the back seat of their car, reading every sign on the road out loud, regardless of the banality of the subject matter. “McDonalds, over 10 billion sold, Dunkin’ Donuts, Kentucky Fried Chicken, Finger Lickin’ Good,” Arthur went on and on. The scene was very funny, but I was skeptical at the time. Does that really happen? The answer is “yes, that does happen!” In fact, it happened for almost 900 miles in our van. I’m not sure if that is a symptom of Alzheimer’s, but it certainly is a sure way to drive your fellow passengers crazy.
Another thing she wondered out loud was the number of trees, or trucks, or anything numerous that she could see through the windshield.
“Look at all those trees! I wonder how many trees are in this state?” or “Wow, are there a lot of trucks! I wonder how many trucks are in this country?”
Our logical minds tried not to listen to this almost constant chatter of unanswerable questions, and mercifully at some point, she would fall asleep. For the entire trip I sat in stunned silence, glancing in the rear view mirror at my mother’s face and all of her possessions and wondering if I had made a huge mistake. Then, I would feel guilty for thinking that, which would occupy another hour or so of the trip, until the next unsolvable inquiry came floating from the back seat.
We stayed that night in Pennsylvania with Al’s friends, and everything went just fine until about 2:00 a.m. Mom would get up in the middle of the night at least once. Al was sleeping upstairs in another bedroom, but I slept with Mom because I knew she would be confused when she woke up, and I didn’t want her to fall or end up outside. She was groaning in her sleep, so I wasn’t getting much rest, and suddenly, she started to get up. I got up, too. I took her to the bathroom. Then, she started complaining about pain in her side, and when I checked, sure enough, she had a full-blown case of shingles. I had seen it several days before when it wasn’t so extensive, and just assumed it was some benign rash. Plus I was too busy packing to deal with something else.
We stayed awake for the remainder of the night, because Mom was too uncomfortable to sleep. I was worried and exhausted, and the minutes crept by until dawn. When Kaye got up in the morning, I asked her about a doctor or clinic we could visit. She was a star. She called the walk-in clinic, who would see us that morning. The doctor took one look at her torso and confirmed shingles. We picked up the medication, having lost only two hours, gave Mom a dose and hit the road. Luckily, the medication made her sleepy, so our second day was quieter than our first.
I dozed on and off that day in the front seat as well. Both of us had lost hours of sleep the night before. We eventually pulled into a truck stop for treats and bathrooms. I was still getting accustomed to how closely I had to monitor my mother. We both went into the bathroom, which had several stalls, and of course, I finished more quickly than Mom and exited the bathroom to find something in the store to eat. I paid for my purchase and went outside, where Al was topping the tank.
“Where’s your mother?” he asked.
“She’s in the bathroom.”
“OK, I’ll get her when I go in to pay,” he said, and turned to the store. I gladly climbed into the van and rested my head back on the seat.
Suddenly Al came running out of the store.
“Did Mom come out here?” he asked. He looked frantic.
“No. Let me check the bathroom.”
I ran inside, my eyes darting through the aisles and flipped open the door to the bathroom. It was empty. Now I was frantic. The bathrooms were off a corridor that led from the store, and at the end of the corridor there was a back door to the truck parking. She had to have turned the wrong way. I pushed open the door to the outside parking lot, but it was empty except for several trucks parked on the far side. I walked hurriedly around the corner of the building, and, there she was. A large man with a waxed mustache, tattoos and a ball cap was leading her to the front of the store where the gas pumps were located. She was chatting away at him about all the trucks, and he answered her in gentle, soft phrases. Whew. I thanked him and took my mother by the arm. Already I had messed up. Could this be considered negligence? Was I really up for this? Luckily, the guy was nice and cared about the little old lady wandering around in the truck parking lot. In fact, over the course of the coming weeks and months, I would discover that many people are concerned about and wonderful to old people. With my heart still in my throat, we climbed back in the van and drove the rest of the way to Gloucester, MA. Our life as a trio had begun.
It sounds like an awful title. I’ve thought about writing this for months, wondering who I might offend, who might understand, who would care, wouldn’t care, etc., until I made myself crazy. Writers expose themselves to criticism as soon as the words go down on paper. And we’re almost all insecure to a person, so we simply have to ignore the devil on our left shoulder and listen to the Muse on the right, particularly when writing about controversial subjects – like Alzheimer’s Disease.
And what a disease. Alzheimer’s basically means the brain is being absorbed or lost or eaten. It begins with the destruction of the hippocampus, responsible for storing experiences to long-term memory. This loss of memory is a warning sign and often panics people who think they have Alzheimer’s because they have a hard time remembering things. The difference is that Alzheimer’s is progressive and punishing, and keeps on devouring the brain. In the mid and later stages, emotional upheaval can include paranoia, anger, aggressiveness and depression. Alzheimer’s always ends in death, and there is no cure.
I was recovering from my own major surgery (spinal fusion), or I might’ve noticed my Mom’s decline a bit sooner. I was in constant debilitating pain and afraid to travel, even ten minutes in a car.
The fact that my Mom didn’t tell anybody about her surgery should’ve been the first clue. Around the middle of July during a phone conversation, she mentioned casually that she was going in for an operation on her leg, which had been causing her pain for some time. She didn’t remember what they were doing, just that it was surgery to correct the “pain in her leg.” I asked her for her doctor’s number.
I didn’t even try to hide the shock in my voice when I learned that she was having a hip replacement. The receptionist was very nice and gave me the necessary details, after which I called my mother.
“Mom, they said you’re having a hip replacement,” I said, attempting to hide panicked emotion in my voice.
“Oh, yeah, I guess that’s right.”
“What were you planning to do – drive yourself to the hospital?” Mom drove until she was 88, without an accident on her record.
“I don’t know,” came the answer. Yeah, something was wrong. I still didn’t catch on. Not until after the surgery.
Mom went through a month of rehab in a building that was part of her Independent Living center. The physical therapy was progressing nicely, and her hip seemed to be doing fine. I had conference calls on a regular basis with the therapists and nurses who cared for her, and finally, they dropped the bomb.
“Your Mother can’t live alone any longer.”
Those words landed like soupy cement in a foundation frame. Heavy. With finality. Just what did that mean?
“Why? She seems fine.”
They had run cognitive tests, and concluded that some type of dementia was taking hold. I purchased a ticket and flew to Indiana. Whether it was the universe, God, or just the tightness of my muscles, my back didn’t hurt at all during my entire trip or the visit with its weighty mission. My dad, who was a minister, used to say that God tempers the wind to the shorn lamb.
Within a half hour of seeing Mom, I knew they were right. Her apartment was a mess. Supermarket flyers, bills, greeting cards and tax records were all jumbled in piles on end tables. This woman had written the manual on organization. She ran her neighborhood association for close to twenty years. She systematized photos albums by geography and chronology, made sound financial decisions, wrote clear tabs for files, kept our kindergarten art projects separate and clearly marked. Jumbled piles of unrelated items were a warning sign. I met with the Director of Rehab.
“Your mother is a wanderer (they actually they called her a “flight risk.” Look that one up. It refers to criminal activity. I was quick to correct them). She left rehab twice and went back to her apartment.”
A flicker of a smile had to have crossed my face, but I stayed on focus. Running away from rehab? I was so proud of her.
“She can no longer live alone, and she can’t stay here. We don’t have a secure memory unit in our facility.”
The walls caved in. I’m not sure if I said anything at all. I was so pissed that they had abandoned my mother– and me. The Director handed me a sheet of paper. This and That Assisted Living facilities with Memory Care Units were listed in alphabetical order. She may have made several recommendations. I was staring at a trembling piece of copy paper with my mother’s future address written somewhere.
I left the office and returned to Mom’s apartment, where she was busy leafing through the piles of dissociated junk.
“Hi!” she chirped. “I was wondering where you were. Isn’t it time for happy hour?”
It was time for happy hour.
This is the first in a series called The Lighter Side of Alzheimer’s by B.B. Boudreau. Marjorie Buls, the subject of these accounts, now lives in Harbor Assisted in the memory care unit in Ft. Wayne, IN, where a marvelous staff watches over her.
The other day my husband bought a boat. This is not an unusual occurrence in my house. It was actually expected, since we were without a sailboat, which for us, is like being without a car for most people. We’ve been married 20 years, and in that time, he’s bought 7 or 8 boats, which numbers vary if you count inflatables and other small crafts. Most of these boats have been purchased without my knowledge, but he’s a boat- and car-buying expert, so I don’t stress anymore when he says, “Wait ‘til you see the boat I bought you!” over the phone. And we both know who he bought it for.
This newest one is small – a trailerable 18’ Precision shoal draft centerboard sailboat. A very cute boat – and as it turns out, quite a sailer. We went on a sail yesterday for hours and hours. It was that much fun. We covered every inch of Gloucester Harbor, the outer harbor, inner harbor, even up Smith Cove, which takes some focus. The wind was just perfect for a small sailboat, not too much, but just enough to move us right along. It was just what I needed to recover from the reviews I read the other day before going for that first sail. I scared the shit out of myself. Several reviews on-line cited instances of how easily this boat goes over and immediately turtles. For those who are not familiar with the term, it’s something you never, ever want to experience on purpose. To “turtle” in sailing means that the boat goes completely over with the mast sticking straight down into the water so that the hull looks like a turtle. We have turtled little boats before, seriously little ones that will pop up if stand on the rail and then the centerboard to right the boat. Not a big deal, though everything in the boat gets wet. Which is exactly why dry bags were invented.
My mind went all over the place – isn’t that what happens to writers? Seeing the boat slap down on the water with one mighty gust, then in slow motion, the mast sinking out of sight into the cold green water, lines snaking down to the depths. No life jackets, and the temperature of this north Atlantic water can kill you in minutes. And it’s all over.
So for the shakedown cruise last week it was a bit gusty and I was nervous the whole time, just waiting for the boat to flip on its side and turtle within seconds. Of course it didn’t happen, and afterward, I started thinking about the fact that Al and I are good sailors – heck, we’ve gone something like 10,000 miles, and some of that was really rough – I’ll tell about those at some later date. Our first cruiser Offbeat had a Universal 4-Cylinder gas engine that was barely reliable. Sometimes it would run, and sometimes, it wouldn’t. Sometimes it would just die for no reason. Not a desirable situation, but boy, you sure learn how to sail a boat under those conditions.
After that first shakedown, I went to the Net and read the real stuff about the Precision 18. Turns out it was designed by a naval architect, Jim Taylor, who lives in Marblehead, right around the corner! What a perception changer that was. I was all set for yesterday’s sail, minus the scary reviews, more confident in my own skills and the boat’s potential.
And we had a great sail. When she started to heel (that is sailing jargon for tipping over), I just held my own and let the boat do her stuff. We learned a lot yesterday.
What’s the lesson?
An old lesson, for sure. DON’T BELIEVE EVERYTHING YOU READ.
Reviews are only opinions, and we know everyone has at least one of those. Who knows who was sailing that boat that turtled? It might’ve been a novice sailor. He also had his 84 year-old father-in-law in the boat. Probably just a series of bad choices all around, and so the boat flipped over.
I’m not implying that our boat will never go over. I’m going to try to prevent that, but it could happen, and then, I’ll know what to do, because I’ve done this before.
A review is only marginally useful, because it is simply the opinion of one person, who might’ve just had a bad episode with their spouse which included slamming doors and very loud “conversation.” This counts for all types of reviews, too, not just sailboats.
Here’s part of the first review I got for my novel The Frenchman: “From the beginning of this fantastic novel through to the end, it holds you on the edge of your seat, not letting go…. for anything.”
I was sooooooooo excited. Oh, it’s going to be good, it’s going to be good, as my eyes flew down the page through all the words, then screeched to a halt on this sentence:
It’s too bad Ms. Boudreau couldn’t come up with a better story . . .
What??????? Old Man and the Sea was about an old guy catching a fish, dag nab it! My mind was in a flurry. What does he mean? Isn’t that story good enough? Maybe I should consider changing something, because if he said this in my very first review, what’s coming? Are subsequent reviews going to question my writing abilities and expose my weaknesses? Maybe I should stop while I’m ahead, and all that other drivel that we subject ourselves to because we are human beings.
And guess what? So is the guy who wrote the review. He shall remain anonymous, because I’m still annoyed about that one sentence. It is a good story. So there.
Stay on top of the water, rely on your own confidence. Work hard and keep your eye on the wind and the ball. Life is too short to worry about others’ opinions.
The two young sisters mimic the twin Thacher Island lighthouses, except that one is taller than the other. The sisters, that is. Today’s major conundrum: “Is the tide coming or going?” I had a head start on the answer – I was here this morning.
“I’m not really a beach person,” taunts my inner voice. But here I am, folding chair, sarong, hat, and a travel mug of, yes, water. It’s 10:30 in the morning.
The tide is coming. The perfect crescent that is Long Beach breaks the waves evenly to its length. Today’s waves are easy, spilling their crests, halfway between breaking and lapping.
Whoever named it Long Beach hit the nail square on. Not that it’s a particularly record-setting long – think of the Jersey shore, hell, the whole coast of Delaware, North Carolina or Florida sport hundreds of miles of beach.
Long Beach looks long. A straight beach simply disappears, but Long Beach curves in a sensual arc from Briar Neck to ¬¬¬¬Cape Hedge, flanked by a parallel seawall on which are perched perfect New England houses. The people down at the north end are not even ant-size; more like gnats.
An ideal day for a sail. The American flag on the blue house at the end of the neck is straight out – gusting to 15 and growing. Too bad we don’t have a sailboat – yet. My husband is looking at a beamy cat. Yikes! What fun that will be. Pretty soon the ocean will start to cap.
One more dip in the water for me will suffice.
I’m not really a beach person. I couldn’t sit here all day. Not unless I had a humongous shade tree or an awning and a Malcolm Gladwell book. Oh, and a jug of gin and tonic. Not all day.
But I’ll be back tomorrow.
Dawn. The renewal of the earth – every day. A chill in the air draws jackets tighter. A symphony echoes through the neighborhood. Without the disruption of people noise, ocean waves that have finally found the shore sigh with rhythmic breath just down the way. Dawn is absent people noise, and nature takes the stage. A car passes and intrudes indelicately on our front-porch peace. The paper arrives. When did paperboy end and paperman begin?
I mean to arise every morning for this time, but sloth often foils my attempts, and I choose warm sleep alongside my best friend. It almost got me today, but dawn came begging, and now that the coffee is beside me, I celebrate. How can I daily miss this magic? Promises are made for future dawn patrol. We will see.
I hungrily absorb the moment. Soon the people noise will take over, beginning with the distant road. When humans awake, they are loud. Cars zoom by, music accosts us from far-off car stereos, mowers, weed whackers, machines of every kind intrude on the subtle song of nature, and we are off to the races in our frantic attempt to make – money? Undoubtedly that is what we are doing. Someone at some point decided that it takes 8 hours for 5 days to call it a “job.” Almost everyone reports at the same time. So, in about two hours, I will join the cluster of noisy humanoids, each alone in separate cars, burning fuel, burning tempers, burning time as they race to another location to do a job in exchange for money. They will pay their mortgage, their utilities, their therapist, the supermarket and finally once a year, the hotelier. They reserve one week or so to come here to the end of Rockport Road, where every day they drag their chairs and towels to the beach, get miserably sunburned, drink margaritas and daiquiris and call it “vacation.” I know them. They were at the beach yesterday and the day before. They were sitting in their beach chairs, punching Smart phones and tablets, telling the electronic world about their escape from daily life, surrounded by hundreds of others doing precisely the same thing. Some kids were actually playing. Whew.
But right now, they are absent for the miracle. The heat that will drive them into icy ocean water in a few hours is not yet upon us, and I long for a sweater, though it is July. A slight breeze is enough to hunch my shoulders.
The dog licks her paws beside me. She enjoys dawn. Every few minutes, she lifts her head and perks her ears to a distant sound, but only human sound causes this reaction. Curled into a ball, ears on alert, she shifts her weight and listens for the next intrusion into our dawn. The sky lightens with the rise of the sun, and doves mourn the passing of this moment. One car and now two pass. It is the beginning of the human race to make money. Ah, so that is why it is called a race. Soon my coffee will be gone and I will reluctantly join the fray. But for now, I rejoice at the daily renewal of life as it was meant to be lived, one quiet moment at a time.
There are other types of “opening” days—days that come only once a year and then are gone for the next 12 months. Just like sports. No one schedules them, writes them on the calendar or draws up an agenda to make sure all the tasks are finished in time for opening day. This opening day simply comes in perfect time almost to the day every year. That day came this last weekend.
It was opening day of my garden. The crocus is first string. I could trump the crocus by planting an earlier bloomer, but I quite like the flashy purple greeting, orange pistils and stamens stretching out to beckon the hardy spring honey bees that find only crocus in their brave forays.
Last year’s sacrificed leaves crackle between the tines of my rake. They will become the top of the compost pile this year, maybe the middle of the pile next year, and the following year or the next, they will be soil that I shovel out of the bottom of the bin to cycle to the garden. It will have changed color and texture. It was fragile and brown and dry; now it is black, heavy and odorous, smelling of the musk of the earth and its decomposers.
Opening day begins with a rake and ends with a beer. I see dozens of worms wriggling away from the upheaval and the robins trail me like children after ice cream. They have seen me clean the garden on opening day before, and pay no attention to my movements unless I get too close. I won’t know what is under the dead leaves until I flip them with the tines. It might uncover the surprise of almost-spread petals that damage easily, or perhaps just the spear of a shoot poking up from the ground which can endure the gentle strokes of my rake. I know approximately where the crocus are, and hand pick those spots to prevent any unintended damage.
My eyes are constantly scanning, wishing for the heads of the hosta. If I step on the emerging shoots, it can ruin the look of the plant for this season. It is still too early. Only the crocus are allowed to give their show for opening day. The hyacinth and tulips are on deck, waiting for English Bluebells, followed by the snow drops, and then the bloom silently ends and the hosta takes over for the closer. They are beautiful, hardy plants that grace the garden all summer, eventually sending up their odd, spiky purple flowers as if they needed to embellish their beauty further, but the blooms are less than the vegetation which will be triumphant until fall.
The tulips are orange and purple. The orange ones actually bloom yellow and sent me to the phone the first year they emerged. Messelaar Bulb Co. has been importing varieties of bulbs from Holland since World War II. The man chuckles into the mouthpiece and asks me to wait a couple of days. “They will turn orange,” he assures. Bulb humor. He is right. Almost immediately upon opening, little veins of orange creep up the petals and soon, my “yellow” tulips are transformed. Amazing.
Spring was long in coming this year, and winter is hanging on even into May. I think I’m the only one who is happy about this. The heat of summer is too much for me and collapses the flower petals into limp, lifeless vestiges of their former splendor. The forsythia and magnolia are now in full bloom, triggering memories of the first time I came to this town twenty years ago. I wanted to live here for the rest of my life, and so far, that is true. I want many more opening days with my garden, feeling the soil, gazing into the happy faces of my ephemeral friends who visit but once a year.
Just passed the half-way mark. There is a definite sense of going up hill to the middle of the Gulf Stream, then downhill to the finish line. A feeling of awe leaves me numb, unable to do anything else but just BE HERE.
The Stream, as it is known to mariners is a living, breathing animate creature. Its character can shift in an instant from spiritually gentle to deathly frightening, thankfully not at the same time. Those of us who have crossed multiple times have felt both the benevolence and ferocity.
We’re riding on that thick deep blue you can touch. It is akin to sailing through gel, above and below the water. Attuned sailors can sense when they enter, not too far from the Florida coast. A fluid warmth raises straight off the water. Even a brisk morning departure from Biscayne Bay becomes a tropical flight as the Golden Globe of Life ascends to the peak of the ocean stage. The Atlantic endlessness stretches before the bow of the boat, and we are coupled with Earth’s liquid.
Though the wind on this particular day is from the north, it is light. Long, steady 3 – 4’ swells roll from the port quarter and thrust us gently eastward. Otto Pilot is at the wheel and my husband Al is playing Sudoku from the
This is my 11th Gulf Stream crossing. The magic number 11, signifying vision, balance, invention, refinement, congruency, fulfillment, and higher ideals. Encountering the number 11 on a repeated basis indicates a psychic understanding, carries a vibration frequency of balance and male and female equality. Right now with the Sudoku King monitoring Otto Pilot and me sitting on the bow of the cat with the my feet periodically sloshing through the cerulean flow, we are at opposing ends of our sanctuary, in perfect harmony. With a turn of my head, I catch his eye and he smiles the smile of a 4 year-old.
Flying fish hurtle through the air, buzzing into flight as they skip off the wave tops. Miami has slipped under the west horizon, so satisfying. On a dark night, the lights of that monstrosity can be seen from Bimini. Horrible.
Three bottlenose dolphins visited this morning, riding the bow wake with little effort, turning their heads to look up at me with puerile smiles. I whoop and holler, then in reaction they surface to breathe and get a closer look. They are gigantic. My body trembles in response. Their greeting is so purposeful, so organic.
Magic – pure magic. Sensation that cannot be described. It must be felt, experienced with such tactile synergy that it rattles your soul.
The wind shifts to SSW at high noon and gybes the big sail. The Stream flattens in response and soon begins to roll from the south, aided by even a breath of wind. This is the direction choice. The white hulls swoosh and gurgle. No one, not one boat in sight.
The gap between us and our destination is narrowing. We are sliding downhill and I struggle to make it last as long as possible. Our ETA is 4:30 – just in time for Happy Hour and the Kalik Gold that has been awaiting me for 4 years. Verbal communication is not yet allowed. This is supreme happiness. Oh, to bottle that sensation and keep it for a lesser day. Special moments are special due to their fleeting nature. But at our end on this trip is the bravura Bahamian Islands. We are off.