Chasing the memory thief

Some four years after finishing chemo for a nasty lymphoma, I find myself struggling with the many side effects of the treatment as well as the lesions. Most annoying for me has been the inability to remember. By remember I am referring to names, facts and sometimes, what I am about to do. I look back the years in which I prided myself in remembering all of the names of students by the end of the second week of class. My retrieval of article titles, authors and journal was equally facile. Now, it is a challenge to remember even one, after a month or so.

Recently, I picked up a brochure at my oncology checkup that was entitled” Chemo brain is real”. Chemo brain perhaps should be defined as the cognitive disruptions that a person treated with cancer experiences. After all, chemo is often a series of poisons that our body endures with the hope of living a longer life with out cancer.

Now I am forced to think back at my mother’s dementia with a new set of eyes. Some of her actions make more sense to me now. I am appreciate how she compensated for her lack of memory. While I am frustrated, I am learning new skills such as writing things down, being consistent with my placement of items and establishing a logical routine. Now , I pad my travel times to accommodate the inevitable search for something before I depart home. The hardest thing to do is forgive myself for my lack of memory acuity. But, I will attempt to listen to my sister’s admonition: ” if you can’t remember it, it must not be important”.

Here’s to mom, happy despite her lack of memory! I only hope I can remain so as well.

The sound of rustling papers and boxes is hard to miss. Mother is hard at work putting together little surprises. A singular earring, a coin and sometimes a tube of lipstick are placed with care in a box.  I have given up trying to stop mother in her activity.  I hid all of the empty boxes I could find, mother had a private stash.  Little boxes of random treats show up around the house.; you can find them set carefully on the coffee or end tables, by her bed, in the bathroom.  At first I responded to them out of frustrating, particularly after spending a week helping her organize her jewelry, only to find that in a few weeks several pairs had become singular.  When asks mother tells me she is organizing her things.

As I think about this behavior, I wonder, it is some through back to our animal nature? After all, birds  carefully may seek out colorful or shiny objects as they build their nests.  This serves the purpose to create a home for their eggs and offspring.   Squirrels also work hard at hiding their nuts, often hiding them creatively in plain site.   Squirrels  also apparently suffer poor recall.  It estimated that they only find about a quarter of the nuts they hide.  Perhaps mother is like a squirrel, hiding storing these treats around the house  to feed her need for a special treat or find.  Another theory I am considering is that her behavior is really a thread to her past family’s OCD -hoarding behavior. Like many who hoard, she feels safer with these objects. They are talisman for her as she faces the fear of her departing memory of place and person;  protection is  offered a few objects at a time.

I have come to realize that my   response to her work at hiding shiny objectives is really the problem.  If I truly believe that  keeping mother safe and happy is the goal for her in her dementia, it is me that has to adapt.  As much as I am frustrated at times, I also try to find meaning in her behavior. In the absence of clear meaning-learning to be present may simply need to suffice. Or, in another sense of the word, except the presents that appear randomly in her home.

As mother and I sit down for dinner, she asks “where is everybody?”. She has been living alone now for about 6 years after being widowed for a second time. Mother fails to remember that my sisters and I are grown. Grandchildren who lived next door and spend much of their childhood in her company have finished college and move on to start new careers. Mother missed the lively conversations, arguments and more than anything company for dinner. The table continues to be set for eight. Every day mother makes sure that each place has silverware and china and most importantly, an abundance of paper napkins.

Eating alone is hazardous to the health of older adults. Down some 40 pounds in the three years after her second husband died, I realized that mother was not remembering or caring enough to eat. After I moved closer and her dementia more pronounced getting mother to eat became a major focus of our day. sitting down for dinner we review the whereabouts of everyone. Working, at choir practice, away for the day, each person is accounted for and at the same time, dinner is consumed. Finding time to sit, socialize and encourage mother to eat may seem like a major challenge. But, all it takes is just one companion to be the “everybody” that is so missed at meals.

When I was married some 40 years ago, my mother lamented that I could have done better in my choice of spouse. She was annoyed that I had thrown off the “doctor” for an itinerant librarian. My father joined her in this lamentation as he said, “never trust a man with a beard- what is he hiding”. The persistence of their discontent with my choice of spouse was tempered only slightly over time with the arrival of grand-children. After my father died, my mother jumped into managing the family business; and, my husband made an effort to visit as little a possible. As my mother slipped into dementia, she slowly forgot that her years of disapproval. My husband, a Buddhist priest, as well as a quiet librarian, became a favorite person for her to sit and talk with. Mother praised his politeness and willingness to listen to her.

Last year mother became ill and developed delirium while in a skilled nursing facility near our home. I visited with her everyday after work until my own illness found me too sick to continue. Gratefully my husband agreed to sit with her when I could not. After mother recovered and returned to her own home she could not remember her hospitalization or sickness. Her only memory of this time was of my husband sitting by her bed. As Her memory further deteriorated by the delirium mixed with dementia, my husband became a central theme in a new story. She related to me that she has know my husband for a long-time, much longer that she has known me. She tells me what a nice man he is and how she enjoys his company. This perhaps is revisionist history, but it is also one of the strange gifts of dementia. A life time of maternal ambivalence has new become affectionate approval.

As I get the morning routine underway, pills and water are set up, coffee is made and small piece of banana bread is placed near by. Mother is away but not yet out and about in the living room. I can hear her by the sound of her walker. I know that she has gone into the bathroom and will soon descend. While I worry about her falling, I know that despite her declining memory and decision-making it is important go give her room, a little autonomy, in her otherwise rapidly closing life. She sits down to our morning ritual. Pills, coffee and eye drops. We entertain the morning news and enjoy some casual conversation. Despite her dementia, mother loves to entertain. A full house of company is her greatest joy. Her curiosity about her guests is marked by the question “where are you from”. Today, I am the subject of her curiosity. She asks me ” where did you grow up”. I give her my street address and she replies “we must have been neighbors”. She looks at me a bit confused. I share with her that my father was John and my mother was Betty Jane. With a slight glimmer of surprise she relates “Oh you must be my daughter”. I respond to this as I do to so many of her moments of forgotten memories, I simply say “why yes”. She smiles and continues to drink her coffee and eat her banana bread.

A few days later I relate this episode to one of my sisters who laughed and reported that I was in the same club with another sister who mother fails to recognize. I relate to my sister that I know that it is important to just “go with it” …”don’t show that you are annoyed or upset” but live with mother in the moment. I tell her that this confusion is the result of “where the amyloid tangles fall”- not a personal slight. In my heart, I am feeling less hurt than sadness. The progression of dementia robs both my mother of her memories and potentially our long standing relationship.

I spend every Tuesday through Friday morning at my mothers home.  Wednesday is shower day.  Last week, the day was off to a good start. Mother agreed to shower with assistance and sat dressed after a hearty meal of oatmeal and banana. She looked at me quizzically and asked “Why can’t I go home?” I tell her she is home. She is living in a house that she build some 25 years ago after my father died. The house has been her great pride, as it sits on a hill looking over our 180 acre farm. Unlike the house of my childhood, this house is spacious, has  a large formal dinning room and great master suite for my mother. She had always insisted that this is where she wanted to stay. But now, with some surprise, she is rejecting it. Instead, she wants to return to either the small bungalow of my youth, or somedays, the home long gone that she lived in prior to her marriage sixty years ago. She asks me how she came to live in this place. I remind her that she made the choice. She then asks about how long as she lived her. When I tell her  25 years, she remarks, “It only seems like a few years”.   As her dementia progresses, home is less a physical place, than a location of her memories.  When we discuss her home prior to marriage, it is generally  connected withy her memories of her brothers and sisters; all but her older sister is now dead.   When we talk about my childhood home, it connects to being a newly wed and left by my father to help run the business “by the seat of her pants”.  She forgets how much she used to complain about the house being too small, or really the house of her mother in laws and not hers. These memories have faded away. She lived in my childhood house for over  forty years. The familiarity of home is embedded in  old memories. Mother expresses being homesick for the home of the past, a feeling that emerges from being “homes-stuck”in the fleeting and unpredictable memories shaped by her dementia.

Once or twice a week mother agrees to have a shower. She always tells me that she has already been into the shower- a falsehood that helps her keep her pride in the absence. The shower ritual begins with heating up the bathroom and water Then a hand-towel is placed on the cold shower bench. As mother sits down on the bench, I wet and wash her back paying special attention to the common “itch” spots.  More often then not these are areas left marked by her bra, caused by her refusal to remove it on most nights.  Scrub and lather, rinse again,  We frequently go over our relationship. “I feel so comfortable with you-  you are my friend-…we must have known each other a long time” mother states.  I respond calmly”Yes- we met in 1952, remember I was born the night that Eisenhower won the nomination for the presidency.  Oh yes- you must be Karen, my daughter.   While at first this repetitive conversation saddened me, I have come to appreciate that her memories of me are at least pleasant.  The showering of smiles and giggles as I pull off her shower cap helps to melt away the cold realities of my filial relationship and replace it a warming friendship.

The  dining room table is always set for at least six or eight people.  Setting the table with  silverware, china and paper napkins have become mother’s most predicable chore. Setting the table is also the only chore she seems to remember how to execute given her dementia.  The table is set for  for many, perhaps  out of habit or  reflecting her  optimistic hope that she will have family and friends for dinner.  As I put the finishing touches on dinner, I can count on mother to say “I will get dinner ready”. I respond ” don’t worry, I have dinner all planned and it will be ready in a few minutes. This exchange, while frustrating to me, signals that  that mother wants to be sure that she is indeed still in charge. Predictably she follows up with “Don’t make  too much food- I’m not that hungry.”  As she takes her seat at the head of the table, I carefully make sure she has well proportioned plate with a protein and at least two vegetables. She finishes off her meal and offers “I did not think I  could eat all of my food – but it was really good”.  She then suggests that we finish the meal with a dish of frozen yogurt.  So much for not hungry, I think to myself.

The challenge is that not all of her caregivers appreciate that her report of being hungry is often in opposition to the her ability to eat and her need for meals.  Protesting meals is mothers  stated grace before dinner.  Perhaps it is  a holdover of her youth in the depression and later as the mother of a large family.  But,  a meal set in front of mother is quickly dispersed with.  The more place settings that are peopled by family and friends- helps the food go down better as well.  Mother is always appreciative for the meal. Tomorrow mother to take up her daily ritual of resetting the table once more.