Expressions
By Caregivers & Clinicians
Dedicated to people who are in any way affected by dementia.

Caregiver Expressions

When my husband, Professor J, was first diagnosed with Primary Progressive Aphasia, I had never heard of the disease. I read all the material that was given to us at that time and still felt extremely confused and ignorant of the debilitating journey that lay ahead. It wasn’t until his sister who told us about a research project that was being conducted by the University of California, San Francisco that I felt a sense of hope. We made arrangements immediately to set up an appointment with Dr. Bruce Miller and his team to test him and see what was this disease and if there was any cure for it. After several days of testing and interviews, it was concluded that he had semantic dementia. Again, I had no clue what this meant and to tell you the truth, I couldn’t face the truth. The word dementia I knew and when I heard that word I went into denial phase not believing this could happen to my intelligent, witty, hardworking, and loving husband.

It is a sad disease as you watch the person you love so much disappear in front of your eyes. Each day is a challenge and brings different situations as this disease progresses. On one day he seems fine and I think, maybe, just maybe, he will be all right and then the next day he cannot express himself, seems confused and acts in a way that just isn’t him. Someone told me “J is no longer there, the J you knew is gone”. I cannot express how hard those words were for me to hear. But I knew this was true, I just couldn’t accept it. As I saw him go through depression, anger, confusion and behaving inappropriately I realized I had to accept it and deal with the situation. It wasn’t easy and is still at times, difficult but what choice is there? He was a giver, a caretaker, treated me like a queen and now the roles have reversed and I need to be the giver, the caretaker and treat him with the respect and dignity he deserves.

There was a period of time where I couldn’t stop crying. How am I going to get through this? My answer came from the comfort and support I found with family and friends. You also discover how some people will disappear from your life because they cannot deal with the disease. Life as you once knew it changes. We have a seventeen year old son and he has lost his father in a time of his life he most needed him. His daughters while older and on their own, are also in varying stages of coping with the continuing loss of their father. You adjust and accept that things will continue to change. You take care of the business at hand, power of attorney, financial arrangements, health provider provisions and wills. All of which I wouldn’t have thought about had it not been for my sister-in-law who took charge of making sure I didn’t wait too long. We did it at a time when he still was able to understand what was going on. I cannot emphasize the importance of taking care of these matters.

I miss his humor. His wit came from playing off on words. This disease takes the words and with that went his humor. I miss our long conversations and planning our retirement. He had to retire earlier than he ever expected. The day he signed his retirement papers from the University was truly a depressing day for him. I miss the “old J” but I am learning to accept and work with the “new J”.

We are lucky to have found the UCSF Memory and Aging Center. The treatment and support we receive from them is truly amazing. They are kind, understanding and treat him as a human being not just a research project. They also help the entire family learn and understand this illness and work with us very closely to answer any questions or concerns that constantly come up. They are always there to assist us. ♦ Luz

(Courtesy of Mind Matters, Fall 2004)

My wife M was born in the Bay Area and we met and married while we were both attending UC Berkeley in the 1960’s. We have lived in Santa Fe, New Mexico for 25 years, but have retained close relationships with friends in the Bay Area.

I retired from a career in physics in the mid 1990’s to be immediately confronted by two years of mounting confusion as signs of dementia appeared in M at a slowly increasing level that I was able neither to understand nor to avoid. The next two years were perhaps my most agonizing. I was increasingly unable to understand the changes that were happening and became increasingly frustrated as I made ever more determined efforts to get doctors to diagnose her. Her outgoing and gregarious nature, her attractive dress and demeanor, and her continued ability to dominate increasingly meaningless but nonetheless fluent conversation made it difficult for her doctors to realize that something was wrong.

In 1999, the testing was finally done that led to a diagnosis of probable Alzheimer’s. The patient’s partner is perhaps the best judge of changes, and the enormity of the anticipated diagnosis makes it extremely difficult to broach the issue of dementia with others, let alone to face it oneself. Until the diagnosis is made, however, grieving and eventual accommodation and healing cannot begin, replacing an unacceptable and debilitating state of uncertainty.

In the three years after diagnosis, we tried new Alzheimer’s medications, invariably producing only secondary adverse reactions. The geropsychiatrist I have been going to on M’s behalf questioned from the start the diagnosis of Alzheimer’s disease. If only because of the adverse reactions experienced by non-Alzheimer’s patients, it is increasingly necessary to differentiate one progressive dementia from another. We were referred to a neurologist who immediately made a diagnosis of FTLD [frontotemporal lobar degeneration], after which, at the advice of a friend from the Bay Area, I took M to UCSF. Dr. Miller’s group tested her and readily made the anticipated diagnosis of semantic dementia.

The behavioral medications which Dr. Miller recommended, first Celexa/Lexapro and then a year later Seroquel, significantly changed the quality of our lives. Although they did not stop the progression of the dementia, they calmed M’s increasingly frustrated, hyperactive and agitated behavior, resulting in her being able to interact better with other people and to accept the increasing constraints being imposed on her everyday activities. During this period, I assembled a group of caregivers to assist me in caring for her an increasing number of afternoons per week and occasional evenings in order to provide me the necessary free time to come to terms with the enormity of the deteriorating situation. I also started to spend time away for a few weeks at a time, a luxury that is indeed a necessity since two lives, not one, depend on the demented person’s primary caregiver maintaining independence and equanimity.

With the help of the calming medications, in the last few years M has become increasingly happy, even joyful, as she slowly declines into something amazingly approaching a state of grace. M is blessed with a total lack of insight as to her condition. We live in a peaceful country setting with minimal stress. She continues her previously well-established routine of exercising a few times a day and habitual daily activities such as arranging intricate tea services at breakfast and in the afternoon, dressing herself and caring for her personal appearance, concerning herself with the appearance of our home, and even keeping a daily diary, which is as meaninglessly and meaningfully paraphrased as her speech. M daily spends time by herself in an ever more childproofed yet minimally constrained home environment. As in the past, she requires near constant activity, which she continues to seek out. Her core personality is amazingly unchanged as it motivates her everyday in familiar yet occasionally inappropriate ways. As her proficiency steadily decreases, she requires increasing supervision, but I have tried to allow her as much freedom as possible, subject only to constraints of personal safety.

Through all this, a love and intimacy has unfolded typical of what I would anticipate to exist between mother and child. M has regressed further and further back into a childhood that I believe to be happier than the ones he had 60 years ago. Her fluent speech is now reduced to a dozen or so paraphrasias of varying and uncertain meaning. ‘I love you’ is the only one with an undeniable meaning that we can truly share; the joy typically evident in her ever-bright eyes is further proof of her happiness. I question whether her life is any less happy now than it would have been had her dementia never surfaced.

Our life situation is perhaps typical of our times. We are separated from our extended family (our two sons live thousands of miles away and visit a few times a year) and community is totally a function of our own making. We increasingly rely on doctors and their diagnoses and medications, but ultimately we rely most on ourselves. I have taken to Buddhism and Jungian philosophy and new relationships to provide the foundation for a deeper understanding of myself. This has allowed me to grow into what I hope is a compassionate human being, able to turn tragedy into self-realization and to help others.

The moment lasts forever
petals floating in its wake
as all our precious objects
change and disappear
and all we see and all we know
rattle on their journeys through the mind
and all we have and all we need
lie hidden still
inside the heart ♦

(Courtesy of Mind Matters, Spring 2005)

On May 18th, 2005, we had plans to celebrate one son’s 40th birthday and our older son’s graduation with a Masters after returning to school for a mid-life career change. About 3:00 p.m., our neurologist asked us to see her as she had news on lab tests and a diagnosis. Our daughter, my husband and I received the bad news that J’s balance problems, memory difficulty, and changes in thinking were due to Creutzfeldt-Jakob Disease (CJD).
That’s how our emotional roller coaster began. We were devastated by the news, but somewhat encouraged as Dr. F told us about a CJD study we might qualify for. From the hospital, we headed for the party to honor our sons. Our family was together there and we all shared the news at the same time.

We decided to come to San Francisco to participate in a Memory and Aging Center study testing a drug to treat CJD. The two months prior, I gradually became J’s caretaker; more a parent than a wife. I’m retired but was active as a hospice volunteer, child- care nursery workers, baby sitter for my grandkids and church council secretary. These roles are now on hold. Because J falls easily, I haven’t left him alone for two months now. Fortunately, all three of our grown kids live less than one hour from us and have been very supportive. They came to visit Dad so I could leave the house for errands.

For every tragic side of J’s condition, there seems to be other things that provide joy. We’ve been changing roles. He used to pay bills, arrange trips, fix whatever needed fixing and now these jobs are mine. He most misses and complains about not driving. While it is a little scary to take these things over, I’m doing okay and that builds my confidence. Also, J was never one to verbally express his more tender feelings. He has been more loving and able to tell family and friends how much he cares for them. His sense of humor is keener than ever and even his stumbling makes him laugh.

He has not lost his stubbornness and that frustrates me a lot. Even with my special education teaching background, I find it hard to use behavior modification techniques on my two hundred pound child-like husband. What sustains us most is that we are both very committed Christians and have the conviction that as scripture says “All things work together for good for those who love God...” We know life right now is difficult, but God is merciful and we are finding so many ways people are helpful and supportive to us. I believe my background of working with special needs students, leading grief support groups, and working with seniors in the Healthy Seniors program will be a continual source of strength. The love expressed by family and friends has been my joy.

The previous paragraphs were written while we were participating in the study at the Memory and Aging Center. Here is the rest of our story. We left San Francisco on June 22 and headed home. The next day, we went to see J’s neurologist and also enrolled in a home hospice program. Very quickly, his night-time hallucinations worsened and he awakened several times and stalked the house searching for intruders he could hear but not find. He picked up his cane to use as a weapon to defend us. Other times, he cautioned me to be quiet since his mother was asleep in the next room. In the morning, when I talked with him about his night-time antics, he was puzzled and recalled that his mother died years ago and that there were no burglars, animals or villains in the house at night. The hallucinations continued and became more frequent.

His balance worsened and he fell frequently, and amazingly, he didn’t get seriously injured. The medications he had been taking to eliminate his nightmares didn’t have any effect on his day time hallucinations. The home hospice people finally convinced me that I could no longer care for him at home. We called a conference with the hospice nurse, the director of a residential hospice, our three adult children, J and I and we all agreed it was time to move J to hospice.

Hospice staff was able to get his medication regulated so the hallucinations stopped and he could sleep at night and so could I. I stayed with him, sleeping on a cot beside his bed. He could reach out and hold my hand if he awakened at night and often did. At first, he really enjoyed eating what he wanted since he no longer had to observe his diabetic diet, but soon swallowing became difficult and he ate less and less. He began to fade, sleeping more and more and became bed bound. His speech was soft and then mostly unintelligible. He became incontinent and had some tremors.

It was not just a time of sorrow, but also of great satisfaction and closure. Family and friends came to see him every day. I stayed with him most of the time, and while I was gone, someone always stayed with him. For a while, we could push him in a wheel chair out to the lovely garden, but later he became confined to his room. Visitors contined coming to reminisce, pray, have a laugh or two and, through it all, J kept his great sense of humor. His faith never faltered; he remarked that if God didn’t heal him, he would have a new pain-free body when he reached eternity and met the Lord face to face.

His family and friends kept a late night vigil, reading scripture, telling stories about his life and what he had meant to them. On July 23rd at 5:45 a.m., J died peacefully with his sons next to his bed and our daughter and I each holding a hand and his sons next to his bed. He was 68 years of age and didn’t appear to have any pain.♦ MF

(Courtesy of Mind Matters, Fall 2005)

My husband, J, has been a patient at the Memory and Aging Center for the past four years. He is enrolled in the FTD clinical research program and has been in the memantine study. Now 57, he remains somewhat of an enigma to the doctors and research staff, as even in his dementia he refuses to be ‘in the box’, with behaviors that cross the lines between Alzheimer’s and frontotemporal dementia. This is typical of J, as throughout his life he has truly marched to the beat of his own drum.

But something began to change about 10 years ago. His behavior has become progressively more bizarre and difficult to deal with. In addition, his short-term memory has become non-existent. In the beginning, I was the only one able to see the changes in him since they were very subtle and could easily be mistaken for increasing eccentricity or perhaps a ‘mid-life crisis’. J was 47 at the time. I took him to our family doctor, who diagnosed ADD and tried a variety of medications, all to no avail. Although our family physician is a very kind and compassionate man, he was only placating me as I am sure he did not really believe anything was wrong with him. I questioned it myself as most of the time he seemed ‘normal’, but like a slow fog rolling in, it gradually took over more of his life. It is that insidious onset that is so disarming, as I learned to adjust to his limitations without even realizing it at first. Soon, you forget what your life was once like, and like the fog that takes over the Central Valley in the winter, it is easy to forget how the world looks when the sun is out.

When I first took J to a nearby neurologist, I was told that he had either a brain tumor or Alzheimer’s and that I should hope for a brain tumor. When the brain tumor was ruled out, I was sent on to a couple of ‘specialists’ in the area. The first one told me, after extensive testing, that there was nothing wrong with him and that he should get a job. Despite examples I provided of his lack of insight and judgment as well as function, I was ignored and told only that I should be ‘more vigilant’ in my supervision of him. Another ‘specialist’ diagnosed him with Alzheimer’s and medications were tried to delay the progression.

I read as much as I could about various forms of dementia and believed that he in fact had frontal lobe dementia. It had become impossible to rationalize with him. His behavior had become erratic and impulsive, and his ability to do things around the house was deteriorating. J had always been good with his hands and was a jack-of-all-trades. There was nothing he could not do. Now he will start projects but be unable to finish them, seeming to have forgotten. When asked about the project, he often has no recollection and denies any responsibility.

In March 2002, J was evaluated at the Memory and Aging Center FTD research program with four days of extensive testing. This was the first time that I felt my concerns were really taken seriously, though even at that time he still appeared to be pretty normal and functioned fairly well in most areas of the testing. It has been almost four years, and J’s decline has been significant. At home, there are few things he can do for himself, and safety issues are becoming a concern. One of my biggest frustrations as a caregiver is his total lack of awareness of the problem and the chaos he creates on a daily, if not hourly, basis. He still walks our golden retriever ‘Mollie’ almost daily, sometimes taking her for miles at a time. J refuses to leash her as he does not believe it is necessary. True to form, Mollie stays right at his side, even in rush hour traffic. I truly believe they both have a protective angel on their shoulders. To the casual observer, J seems normal or maybe mildly eccentric, but he has a tremendous gift of demonstrating interest in others and of making others feel good about themselves. He has standard greetings that he throws out to strangers, and they inevitably walk away with a big smile on their face. Even in his dementia he has a charisma that draws others to him. He even fools me sometimes, and I wonder which of us truly has dementia.

J was a special education teacher and executive director of a couple of associations for the mentally handicapped. He had been an advocate for the mentally challenged his whole adult life, and was a tireless advocate for the disadvantaged and disenfranchised. How ironic that he has now become one who now needs that compassion and empathy from others, although he is blessedly unaware of this need or of his inabilities.

Life with J is definitely a challenge. His favorite expression in life was ‘Your worst experience is your best’ and I am trying to appreciate his perspective. I have been told that in life we are given certain situations to deal with ‘because we can’. Sometimes I can and sometimes I feel as if I cannot or do not want to. But then I remind myself that I am not in charge and that I am only seeing a small piece of the puzzle. So, I do my best one day at a time and rely on our children to help out when they can. The children are now all young adults with busy lives of their own, and I am so proud and grateful of their willingness to step up to the plate and help out. ♦ LT

(Courtesy of Mind Matters, Spring 2006)

Clinician Expressions

Today was one of those unforgettable days that gently descended on me as an unexpected gift and made me entirely alive, so deeply vibrant that my mind and heart could not sit still but feels a need to keep going, with excitement, with curiosity, with a fire that only immense compassion for another human being can ignite in me.

I am looking for a word that can describe this uniquely beautiful Mexican family that came to us today with so much courage, bestowing unspoken questions upon our wondering minds. This small group of three; woke up at four o’clock this morning, drove for two and half hours to check in with strangers of a foreign tongue at eight a.m.

Why are they coming into this world of lumbar punctures, collection of bodily fluids of every sort, and infinite blood drain? Which selfless motive gives them the strength to ask the question whose answer can devastate the very core of human faith?

I am translating carefully the chosen words of our endless consent forms. For an entire hour the only question they ask is: “Will the lumbar puncture hurt?”

We have with us the 25-year-old daughter, married, mother of two kids. Her English is correct but insecure in the richness of a Hispanic accent. Her English, as her self-confidence, are easily shaken. She is beautiful and brave. And so are her parents. The mother in her very rare lucid moments disarm with warmth, black hair playfully frames her almost indigenous face; the kind Frida Kahlo drew power from and for. I imagine her being a jocular woman, I imagine her being free and unapologetic of her ways, she must have laughed a lot and aloud with her five children and handsome husband. I have a strong sense that she did what she wanted in her life. I build these totally speculative worlds of hers in my mind as I look at her shattered to inconceivable pieces during our neuro exam. She cannot follow two step commands, she cannot talk in full sentences, she cannot repeat or ask, fails to follow with her eyes even when the target is a 10 dollar bill, cannot easily hold her hands up or grip fingers or relax her arms. She cannot shut her eyes with the determination we would like her to, later on she cannot open them. She tries and then gives up on us easily, she looks bored, nervous, cannot let go of her saliva, possibly has menstrual pains, she departs from all of us for moments and surprisingly returns again and gives it another try.

We all talk to her at the same time, Michael, I, her husband. We use English, Spanish, Spanglish, French, Italian, hands, legs, gestures, we hope she will imitate. By the end of it I run low on hope altogether. I am interested and desperate with her world. I am fascinated, intrigued, perplexed, I am lost with all the patterns I have gently built in last the few months. She has removed my concepts, she demands to be examined in separate light, so I give up and solely study her. She earns 3 points on her mini mental exam. My testing is a torture, and as I ask questions, I feel uneasiness building in the room. She is fidgeting, her eyes move about rapidly and lay on every imaginable object in the room, as far from my drawings as possible. So I give up again, leave the drawings to their untouched destiny, remove the desk between us and offer her to lie down. As I wait for Michael, I invite myself into their world.

And this beautiful Mexican couple allows me in. They tell me of their children, houses, jobs; she laughs. She laughs loudly and I feel charmed. It is almost 4:00 p.m., Journal Club [weekly lecture for Memory and Aging Center research staff] is about to start, and for a moment I feel a slight sense of loss. But here they are, bathed in precious San Francisco sunshine, jocular moments of two people divorced from illness, narrating their first meeting in magnificent Guadalajara. I admire her husband who retired because she was afraid to stay home alone, who signed all of our consent forms for her, who hopes but does not demand answers when he asks a question: “What can you do to help her?” That exceptional husband of hers lets me know of their recently married children with whom they dine every evening, their visits with friends, and their young ones who play with other children in their safe neighborhood.

After all the questions we have asked today, after all the tests, in looming determination of their genes, they are smiling, they are kind, they are graceful, they are joyful about their trip home to greet their children. I am humbled beyond words. On this beautiful day, I feel grateful to be alive, to be so awakened to what is deeply meaningful, to be so entirely charmed. When we surprise this disease and change its will by our ingenious cures, I will remember this day and these people who filled me with magnificent poetry. I will wrap my willing heart around the husband’s question and finally offer an answer; dedicated to the memory of his beautiful wife. ~DP (March 2005)

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