Losing Our Mother Bina 2010

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Title: Losing Our Mother

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Byline: Debbie Shapiro

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Mark Twain said “clothes maketh the man.” But when observing someone with Alzheimer’s disease, it becomes clear that it is not clothing, but memory that makes a person. Its central role in our ability to function and communicate is highlighted when we see the devastating effects of its loss. Two sisters, Sharon Braun* and Naomi Levine*, who lost their mother to Alzheimer's several years ago, share their mother’s journey into the world of the memory-less.

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Binah: When did you first notice that there was a problem?

Sharon: As happens with so many families today, our family is spread across the world. When the problem began, my mother was living in Northern California, I was living in the Midwest, my sister Sarah in the South, my other sister Naomi in Israel and my older brother Jeff "just" a one and a half hour drive away. As a result, no one in the immediate family was in day to day contact with our mother, so by the time we realized that something was wrong, it was already serious.

I first noticed the problem when Mom was in her early seventies. She would repeatedly ask the same question and it became obvious that she was forgetting important things. For example, although she remembered that my children were her grandchildren, she could not recall their names.

But it took a real scare for me to see that the problem was serious.  Many members of our family were gathering together to attend an extended family reunion in Montreal, Canada. Since Mom wanted to visit her brother, she was scheduled to arrive several days earlier than the rest of the family.  When my uncle went to the airport to pick her up, he discovered that she wasn't on her flight. He called me, half hysterical, to ask if I knew where she was. We spent the next few hours on the phone, calling the airline and airport security, trying to track her down, but without success. Eventually we learned that she had missed her flight and that the airline had transferred her to a later flight. She was afraid to leave the boarding gate to call us, as she realized that she might forget where she was – which meant that she herself was aware that she was having memory problems.

Mom was a pro at masking her cognitive deterioration. She was very polished and managed beautifully in routine situations. In the early stages of Alzheimer's, she basically operated on automatic pilot. So, for example, because she went swimming almost every morning, she had no problem driving to the pool and back. But without the ability to adapt to change, she was totally helpless in new situations.

Naomi:  About a year after the family reunion, I came to visit Mom and stayed at her home for close to a week. The trip itself was very difficult as I still had small children at home and I was torn at the thought of leaving them for so many days. But after a cousin told me that Mom was showing early signs of Alzheimer's, I realized that I had better go while we could still have quality time together.

Because I was with her around the clock, I saw things that no one else did – and I was terrified. She would put the clothes from the washer into the dryer and then back into the washer, over and over again. When I'd tell her that the clothes were clean, she'd look at me blankly, laugh at her mistake, and continue mindlessly transferring the clothes from one machine to the other. She'd tell me that she was going to eat supper, remove the food from the refrigerator, and then put it back without even tasting it. Some of the things she did were downright dangerous. For example, she'd turn on the stove, but forget to put the pot on the fire, or, alternately, she'd place the pot on the burner while forgetting to turn on the stove. Although at times she was completely coherent, and occasionally even made some very perceptive remarks, at other times it was obvious that she had no idea where she was or who had come to visit her. When I shared my fears for my mother's safety with my siblings, they felt I was overreacting. That was probably because although they visited regularly, they always took her out and never observed her in her own home. There was nothing I could do. My hands were tied and I returned home with a heavy heart.

Sharon: Shortly after Naomi returned to Israel, a few things happened that really brought the situation home to me. Mom once went to the bank for something and while she was there, she decided to remove all her jewelry and other belongings from the safety deposit box. We're not sure exactly what happened after that, as she was not coherent, but from what we deduced, her car stalled and she left it to look for help, leaving the contents of her safety deposit box on the back seat without locking the car or closing the windows. Then, since she had no idea where she had left the car, it took quite a while until she found it, and when she did, the valuables were gone.  

A few months later, my other sister Sarah and I traveled to California to visit our mother. One of the first things we did was to take her food shopping. But when we returned to her house a week later, all the food that we had bought was rotting in the refrigerator while she was subsisting on bread and butter. We later realized that she didn’t have the mental capacity to prepare a meal. At that moment it became obvious to us that our mother could not continue living by herself. Sarah and I wanted to bring in a fulltime caregiver. We felt it would be wrong to move her; that she'd be miserable far from her home and neighbors. However, my brother Jeff felt that since Mom had always made friends easily, she would be happiest in an assisted living facility, where she'd meet new people and have social activities to keep her busy. He convinced her to move there for two weeks so that he could paint her house. But once Mom was there, she didn't want to leave. At first Sarah and I were furious, but we eventually realized that Jeff had done the right thing. Mom loved her new home.

Although at first I visited Mom every few weeks, I couldn't continue taking off so much time from work. So my siblings and I hired a social worker to visit her weekly to evaluate the progression of her disease. Interestingly enough, although my mother was rapidly losing her cognitive abilities, her social skills were so good that she succeeded in concealing the truth from the social worker! If the social worker would ask her something like, "How old are you?" my mother would evade an answer with a response, such as, "Old enough to know better," and deftly change the subject.

Naomi: A few months after my mother moved to the facility, I came to visit and took her shopping at the local mall. She kept on walking up to total strangers and would look them in the eyes and say somethinglike, "I don't know where we met, but I am sure that we know each other. Did you ever work…" Her demeanor was so sincere that people automatically assumed that they were the ones suffering from a memory problem. Meanwhile, I gently tried to distract her so that we could graciously slip away. 

Sharon:  I once took Mom to visit her older sister who lived in a nursing home in a different city. Although they both enjoyed themselves reminiscing about the past, they were clueless about the present. On that same trip, I took both my two year old granddaughter and my mother grocery shopping. A small truck reared into our car just as we were leaving the parking lot. While I was trying to exchange information with the other driver, my mother and the baby were screaming hysterically that they wanted to get out of the car NOW! If felt as if I had two toddlers on my hands! It was an impossible situation, and one that brought home to me just how much my mother had changed.

As Mom's situation deteriorated, Jeff felt that she had outgrown the facility and should be moved to a nursing home. Sarah and I, however, wanted to postpone the inevitable for as long as possible.  But eventually we, too, came to the conclusion that Jeff was right and that Mom really did need full time nursing care. Deciding what that should be became another major source of friction in our family. I wanted to bring Mom to live with us. Jeff, however, felt that a nursing home was more equipped to meet Mom's growing needs. Since Naomi lived overseas, it was basically Sarah and I against Jeff, and Jeff felt that we were ganging up against him. But Jeff was her legal guardian, so we had no choice but to do what he wanted. Amazingly enough, the social worker told us that one of the best nursing homes in the country was located just minutes from where I lived. Jeff and his wife Linda accompanied Mom across country and helped her to get settled in her new home.

At first, Mom was placed in the independent living section of the facility. Within a few weeks, however, it became obvious that she needed to be moved to the locked Alzheimer's section. A few days before the move, one of the nursing home's social worker invited me to visit the Alzheimer's section. Although the staff was cheerful and the care excellent, the patients' eyes were blank and empty. When I heard them babble nonsense, beg me to take them home and ask for their mothers, I broke down in tears. It brought home to me that my once witty and gentle mother no longer existed; that she was a shadow of her former self and that we were gradually losing her. Although intellectually I understood that that this was what my mother needed, emotionally it was a bitter pill to swallow.

When Mom was well, she volunteered with hospitalized cancer patients, so she felt at home in a hospital setting. While she was still able to walk, she would go up to the other patients, and sometimes even the nurses and doctors, to ask them if anything is the matter and if perhaps she could be of assistance. Although she was doing it by rote, her empathy shone through.

I loved spending time with Mom. While she was still able to get around, I would bring her to our house and help her into our pool.  She had always loved swimming, and even when she was sick, she was still a good swimmer. Afterwards, she'd join us for dinner. Although meaningful conversation was impossible, she enjoyed the attention, and I enjoyed giving her pleasure.

Getting Mom into the car, however, was always a hassle, one that took a tremendous amount of patience on my part. One freezing cold, rainy day, I took Mom shopping and when it was time to return home, no matter what I did or said she refused to enter car. When a stranger offered to help, my mother told him, "I WILL NOT get into that car. This lady wants to take me somewhere and I don't want to go with her!" That's when I realized that she had no idea who I was. It was extremely painful. Later on, I'd be in the midst of talking with her when she'd look at me and ask, "Where's my daughter Sharon? She never visits me." Although I tried to tell her that I was her daughter, Sharon, she never believed me.

Mom loved music, so I would try to sing with her, which was really difficult as I can't carry a tune. Musical memory stems from a different area of the brain and may remain intact longer than other types of memory, so even while my mother was incapable of remembering who I was, or even who she was, she was able to remember all the old songs – with all the lyrics! I tried to bring her to all of the music programs offered by the facility. It was amazing – the pianist would play a few notes and while I was still trying to figure out what song she was playing, my mother would be singing it.

Naomi:  On one of my visits, Sharon and I brought Mom to Sharon's home where we listened together to the music track of familiar old-fashioned songs. Mom sat on the sofa with her head back and her eyes closed, singing like a nightingale. It was so beautiful. Watching her, I felt that for those few moments she had been set free; that she was soaring beyond the confines of her disease. To this day those songs bring tears to my eyes. 

Once conversation became impossible, I would spend my visits singing with her. I'd find a secluded corridor and we'd sing the same songs over and over again.

Sometimes I wondered why I was traveling halfway across the world to spend time with a woman who did not recognize me anymore. But other than our last two visits together — when she was already in the very last stages of Alzheimer's and nearing death — she always had one moment of clarity and would express delight that I had come from Israel to see her, before receding back into the fog of her disease.

One of my most beautiful memories took place about half a year before she passed away, when she was just a shell of her former, vibrant self. All her daughters and her daughter-in-law, and many of the female grandchildren, had gathered together for a few days of "family time." On Sunday morning, most of us went to see her at the nursing home. Since she wasn’t responding to any of our friendly overtures, I suggested that we sing for her. We closed the door to her room and sang all her old favorites – I think we sang "How Much is that Doggy in the Window" at least five times! Although she was completely non-verbal, her lips moved as she tried to join us. It was obvious that she was enjoying herself tremendously. 

Binah: It must have been difficult for the family to see her like that.

Naomi: It certainly was! On the ride back home, everyone was pensive and no one really talked much – which is very unusual for our family. I think they were shocked. They knew she was sick, but because they hadn't been visiting her regularly, they didn't realize what that meant. Some of my nieces didn't come as they felt that they could not deal with seeing her like that. But those that went were glad they had gone.

My siblings appreciated that every six months or so I traveled halfway around the world to visit my mother. I spent hours with her each day — talking, singing, holding her hand — and when I'd return to my sister's house I'd be emotionally exhausted. One of the perks of visiting my mother was that I began to know my family. Because I lived so far away, I had lost touch with my siblings. Now we had a chance to bond again.

Binah: And when she passed away?

Sharon: I had been mourning her all along. I had no doubt that she was suffering terribly, but she was unable to express it to us. On the other hand, until she passed away, she was physically there and I was able to see her and spend time with her. With death, the separation became final.

Although I knew that Alzheimer's is terminal and that she was in the final stage of the disease, the actual phone call came as a shock. The nurses found her dead; we assume that she had choked on her own saliva. I immediately drove to the nursing home to make sure that everything would be taken care of properly. Then I spent several hours sitting next to her body waiting for the funeral staff to arrive, contemplating our life together and how she had made me into the person I am today.

Naomi: I was sitting at the kitchen table, eating breakfast, when my sister phoned with the news. The moment I heard her voice, I knew that something had happened; for my sister it was the middle of the night, but she (considerate, as always) had waited until it was morning in Israel. I wasn't shocked or sad. Instead, I felt a sense of closure. The mother who I had grown up with – the sweet, gentle lady whose greatest pleasure was helping others – had been dead for years, and all that had remained was a frail physical shell. Her soul had been locked into an impenetrable prison. Now, it was free.

I traveled to the States for the funeral, and sat shiva at my sister's house. Many members of the frum community came to the funeral. The community's chessed continued during the week of shiva —total strangers came to pay a shiva call and bring me food.  I was amazed at the chessed of the frum world.

Today, three of my grandchildren carry my mother's name. I pray that they will follow her legacy of chessed. The truth is that as her descendents, we all carry something of her within us, and that is our family's greatest nechama. 

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Dementia is a reduction in brain function due to deterioration of the brain cells. Although there are over thirty different conditions that impact cognitive function, more than half of the people diagnosed with dementia suffer from Alzheimer's. 

Alzheimer's and other degenerative brain conditions cause brain deterioration, yet studies show that people who stimulate their minds can delay the onset of cognitive impairment. When the brain is in use, new neural pathways are created  and old ones are strengthened, counteracting the effects of degenerating pathways. 

Normal brain function peaks between the ages of eighteen to twenty. As a person grows older, her brain uses less efficient pathways and is less capable of simultaneously juggling information. Therefore, it is usual to have memory loss or difficulty learning a new skill. Exercising the brain keeps age-related degeneration to a minimum and can greatly reduce the impact of diseases that affect cognitive function. 

How to we exercise the brain? Geriatric specialist Bernice Schwartz, MSW, LCSW, suggests “Don't waste your time doing mindless things; think about what you're doing and avoid ritualistic habitual patterns. Introduce new experiences by doing things differently – brush your teeth with your other hand, walk home using a different route. Choose leisure activities that stimulate the brain. Dancing, for example, is fantastic, as it involves many different parts of the brain. It's not easy to stay coordinated as you're learning new steps and keeping to a rhythm! Read a thought provoking book. Play games that involve concentration, strategy and/or memory, such as chess, Rummikub, Bridge and Scrabble. They all strengthen the brain, as do puzzles, crossword puzzles and Sudoku. Go to lectures, learn something new. Challenge yourself and continue growing. Torah study, of course, is excellent for the brain – as well as the neshama! Whatever you do, don't stagnate!”

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