Forgotten Memories: Alice’s Alzheimer’s Journey tells the story of Alice Lusby Pasqualetti ’52 and her struggle with Alzheimer’s disease. In the following essay, Alice tells her own story.
Alice Lusby Pasqualetti ’52
“7/2/2012 – dementia – type Alzheimer’s?”
There it was – at last – after how many decades? For so many years I knew that I had Alzheimer’s. I wanted to tell my doctor: “ No need for the question mark. I know what I have.”
Sitting in the stacks of a library at the University of California Berkeley campus, I was attempting to do my homework. After years of learning languages, I was beginning to have trouble with memorization. I was studying Russian because I wanted to read and understand some of what I would hear and see in Moscow where my husband and I would be attending the 1980 summer Olympics. For my five-day a week, 8 a.m. class, I had to memorize a paragraph in Russian, then recite it.
“O.K., Alice, let’s try again.” I gave myself a pep talk, but still could not memorize and did not have it memorized by class the next day. I recited what I could remember very poorly: mine was not a stellar performance.
What happened to me between June 1979 and July 2, 2012?
Acknowledging that I was not having short-term memory problems . . . I was having one-second memory problems, was a tough step.
Although I went on to receive my state license to teach French, I continued to ask myself why I could no longer memorize with ease, nor remember so much of what I had already learned. For example, I joined a French group that met for over two hours every couple of weeks. I loved the people ¾ two native speakers and about five of us who spoke French well. During the first hour we did translation ¾ English-French; French-English. I began to notice that when it was my turn to translate French-English, I would encounter a French word I did not know, a word that had once been familiar. Someone in the group would prompt me. I would get to the next paragraph and there was the same word. Again, I could not remember its meaning. How utterly embarrassing! After eight years with this group, I dropped out, unable to bear my alarming performance.
There were other harbingers that something was not right ¾ I would walk into a room, stop, and try to figure out why I was there (at first saying to myself, “Oh, that’s just a senior moment; all older people have that”); why can’t I get this tee-shirt on straight ¾ how did it end up wearing it backwards?
As a frequent volunteer in the library of a local think-tank, I often affixed the Library of Congress numbers to new books. One morning the librarian showed me what I had done the previous week: I had put the same number on five different new books. I asked myself, “How is that possible?” Afterwards I noticed that my work was carefully supervised, something I had never experienced in any previous job. At another job I could no longer collate the papers that shot out from a huge copy machine. I had a sample packet: All I had to do was repeat the order. I simply could not figure it out. Humiliated, I went to the manager for assistance. Thereafter, I was never asked to collate.
It became difficult to maintain my check register, balance my checkbook, or write checks accurately; I had to hire a bookkeeper. Wistfully, I recalled the eight-year period when I worked in a law office and carried the responsibility for double-entry bookkeeping.
I attended a party where I was telling a person I had just met about my new car. “Last week I got a cute new car, a Toyota Corolla, and ……………..” Brick wall. I COULD NOT FIND THE NEXT WORD. And, where was I going with this? I stopped going to parties. I knew guests would think, “Who is this strange lady who just stops talking? What’s the matter with her?” So, so humiliating. Sometimes, I got into my car, knowing that I needed to go from Point A to Point B ¾ I had done it a hundred times. But what route do I take to get there? I could not see it in my mind so I would just start out going in the direction I knew and would make turns, go back, turn around until I knew where I was. I soon developed a roster of four loyal young people who drove me.
With one of my drivers we went to the store to get an instamatic camera. I remember paying and seeing the cashier put it in a white plastic bag. Then the memory is blurred. Did we put it in the car? Did we leave it on the counter by check-out? I can’t find it anywhere. I call my driver once I am back home. He remembers putting it in my office. I search there again; nothing. A week passes. Driver and I return to the store to ask if someone found it. No. Another two weeks pass. I need a camera so we go back to the store and get another. Four months later, I am searching for a light bulb and go to the box labeled “bulbs.” I open it ¾ inside is the white plastic bag holding the first camera. Misplacing things became a major problem.
I who have always been so attracted by words could no longer spell accurately. The dictionary search remains one of my toughest tasks. If I need to look up the meaning of a word, I have to find the word first. How to spell it? I open the dictionary to where I think the word might be. Example: khaki. Here’s what I do: I say it: “ka,” “kak.” I turn to “k” in the dictionary; I search for “ka.” I find nothing. “kak,” “kak.” “Wait – there’s an “h” in there some place ‘kakhi?” Not found. Maybe I can use a different color. No, I need that color because I am describing it. Maybe it’s ha. I follow down the list with my fingers and see “khaki.” But it doesn’t look right to me. Not convinced, I say “I guess that’s it.” Often the spelling does not look right. In confusion and disbelief I write the word the way I see it spelled.
Typing was a skill I had known since age fourteen; it became a despised chore, especially first thing in the morning. In one line, I could make four errors, correct them, then continue to make similar mistakes. I have used a computer for over 25 years and like many people, I know how to do basic word-processing operations and a few other functions. One day I sat down to call up my templates. I sat and sat and sat, not remembering how to do a process I had done at least 800 times before. The anger and rage that built up in my chest hurt intensely. I got up and went to the kitchen to take a break and get a glass of water. Ten minutes later – ah, yes, I remember how to do that. Frightening.
Three years ago I started dropping things. The most wounding incident was picking up a cup and saucer from my deceased mother’s china and dropping it on my kitchen tiles: I cried as a hundred pieces spread out across the floor. It did not occur to me that dropping things could be related to my cognitive skills which seemed to be heading swiftly south.
One evening I was home quietly reading when the phone rang. A friend who lives in another state was calling. We were having a lively, friendly talk when I asked her when she could come to see me and added that she would love my little interesting town. Silence.
“I was there to see you three years ago. Don’t you remember?”
No, I did not remember. And I do not recall what I next said. Whatever it was, it was not a good choice apparently; I never heard from that friend again. I was gloomy and beyond embarrassed.
Most of these problems are interconnected.
You may be wondering: “Didn’t you do anything about your suspicions?” To my loyal neurologist I had said a hundred times: “I have Alzheimer’s.”
Answer: “No, you don’t.”
When I became so anxious about what I knew was true, he had me tested by a neuropsychologist – three times in fact. I took Aricept but experienced no change. It was discontinued.
I subscribed to a prominent research hospital’s publications about brain disease and read AD material from five additional research centers. All provided questionnaires and charts entitled something like “Red Flags for AD.” Ten flags are usually cited. I took all these tests – probably about nine of them so far and have never scored fewer than seven flags. Normally, I score eight.
One interesting and possible diagnostic predictor of AD is a history of urinary infections, sleep difficulties and depression. A survey was done of 795 Alzheimer’s (AD) patients being served by one teaching and research hospital; it showed that most had a history of urinary tract infections, sleeping problems, depression, and a recent history of dropping things. These were all things that had plagued me for years.
So, in July 2012, I changed internists and began to work with a physician who specialized in geriatrics ¾ appropriate for my then 81 years. She took a long, careful history, performed tests in her office and ordered diagnostic and lab work. Not all the professionals I have seen ¾ internist, neurologist and neuropsychologist ¾ agree about the type of dementia I have. We made a decision to deal with my most pressing daily difficulties and not to devote more time and testing to figuring out my dementia type.
The plan was to begin with Exelon and work with a psychotherapist and speech therapist; to continue my exercise program at the gym; and, to drink eight glasses of water each day – get serious about that since lab work had raised questions about kidney function. (I had a very poor record of daily water intake – that has changed.)
Exelon caused the most severe nausea I have ever experienced. Namenta is a gift to me. I am less aware of daily impairment with this drug. Of course, I know that nothing available now can halt AD or reverse it. It is probable that over time Namenta will help less and less. That’s all right. I am grateful for each less-impaired day now.
In the medical literature I see AD defined as “that catastrophic always fatal disease.” What happened immediately after I read the July 2012 working diagnosis? I made appointments with professional people – my lawyer, the CPA, my financial advisor and insurance people. My motto was: “Plan as well as I can while I can.” AD is nothing if not costly and unpredictable as to time line. I do not want to be a burden to anyone. Will I succeed with that goal? Unknown at present.
Who Needs to Know
AD is an equal opportunity disease. Anybody can have it. There is always this question: Whom do I tell? I ended up with this criterion: Who needs to know? What I have no control over is how they will react.
What I fear most is the loss of my closest friend who lives way down in the south of my state, a five-hour drive from my house. Her mother ended her life in a care facility with severe dementia. Now here I am. The next time my friend comes up to see me we plan to play some of my brain games recommended by the speech therapist. Will my friend find this too depressing? Will she have to stop returning my calls or calling me because I dwell too much on the disease? I try hard not to tell her every detail of the strange things which I experience. When she does not return a call to me within two days I always think, “Maybe she can’t bear this any more.”
I have a trusted, dependable nephew who has agreed to work, as needed, with the doctors and lawyer. He agreed to this in spite of the fact that he has a wife, three children, a big house, and runs a business which requires that he travel the world over. Even as an elderly widow with no children I feel surrounded by people so willing to help. I am grateful daily.
Some of my nieces and nephews deserved to know. I could not leave them wondering “What is wrong with Auntie Alice?” They have been kind and thoughtful, visiting me even though they have to fly considerable distances to see me.
My drivers, office manager, cleaning lady, vet tech who assists me in caring for my cats, and my computer guru ¾ these faithful people had to know. They were all immediately supportive, assuring me that they are in it for the long haul.
Two close friends with whom I share a keen interest in opera had to know. My speech difficulties were too severe to hide. And friends from my four decades in California: we have shared too much not to let them know as they have kept me posted on their medical challenges.
Finally, how long will I be able to have my beloved cats? Certainly not in a nursing facility if that’s where I end up. Of course, I won’t know that they are not with me. At least my lawyer has prepared a plan for their care. The cats will be fine.
That’s about all.
Learning to Cope
For the first time in my life, I came to a point where I could no longer keep track of appointments, deadlines, and commitments. I failed to show up for regularly scheduled medical appointments; twice, I forgot a lunch date I had made with friends; I even failed to put an estimated income tax payment on my calendar and received a stiff fine. Sometimes, I don’t remember to call friends when I said I would.
There are changes I have had to make in order to get through each day, be responsible to myself and to others. Now, I write and post each day’s activities and review this schedule frequently, sometimes many times in the same day. Someday, down the road, I may not be able to write or read the schedule.
Since I take several medications and supplements, I lay out the assortment in a container designed to hold meds for two weeks. Each morning and each evening I put the meds in a cup and take portions accordingly as I drink a glass of water. Just yesterday evening I saw that I had taken only some of the morning meds and had forgotten the remainder.
Facing the Sadness
By now, I am many years into cognitive impairment. I remind myself that I must not get angry with myself; I must not call myself a cretin. I must push on. Yet, the sadness feels like a shade being pulled down over my face. Suddenly I realize what’s happening. I cannot let this go. I live alone; I am old; I must fight sadness, so I call my two funny cats and we play with their many toys. Slowly, I feel better.
When I was little, my mother read to me every evening before putting me to bed. In middle school I won the prize for the student who read the most books over the summer. Books have been my cherished friends. AD altered that joy. For many months I could not interest myself in any book. Then the doctors tried a different medicine. Magic! I began to read mysteries and continued on with them even though I saw that toward the end of the story, when a history of the characters was given, I usually could not remember who was who. I had forgotten their names. My friendly next-door neighbor also likes mysteries and I pass my completed books along to him. Yesterday, he started to talk to me about the leading character in one of them ¾ a story I had read three days prior. I could not see that character in my tangled brain and could not join in the conversation. My neighbor must have seen that I was not tracking and said ”You know what I mean?” I pretended that I understood.
It’s extremely painful to think that some day I might yell and scream at friends and well-meaning caretakers. I probably won’t realize I’m doing that; they will. Some friends who know people with AD tell me how sorrowful it is when their loved one no longer knows them. I do not want to hurt my friends.
Recently I filed a complaint against a hospital employee who was responsible for responding to my calls but did not do so. Did he see a list of my medications, including the Namenta – and simply conclude, “Oh, well, she’s just an old crazy lady – no need to answer her.” It’s easy to marginalize an AD patient and it’s tough to know that that’s the way it is.
I come now to the end of this exercise of looking at snippets of my life pre- and post AD diagnosis. I am finding my way over uncharted land; there are bumps and snags. I would really like to avoid the last stages of this brain disease. Maybe I will have a big major case of pneumonia which would provide an easier exit ¾ I’d like that but can’t count on it.
I handle each day to the best of my remaining ability: I take my meds; I do my gym program; I plan meals and go grocery shopping with a driver; I read in English, French and
Spanish, listen to music and write to a few friends (I especially like my little hand-held electronic language dictionaries); I refer to the day’s agenda which I write and post throughout the house; I look at the calendar in each room trying to keep myself anchored in time and place; I show up for medical appointments; I use the tools the speech therapist has given me ¾ I want to hold on to friends albeit reduced in number; and I say “Gratitudes” every day since there is much to be thankful for.
AD requires the ultimate in patience. One day – how far in the future? ¾ I shall run out of patience. For now, each morning I say my mantra: WE PUSH ON!
ALICE LUSBY PASQUALETTI, Class of 1952