This presentation was part of a three-part session titled "Surviving Change and Living Well: Coping with Grief and Loss". The three presenters were Ms. JoAnn Ciatto, Ms. Trudi Cholewinski, and Dr. Thad Raushi. The program was given in April 2002 at the "2002 Joint Conference of the National Council on the Aging and the American Society on Aging" in Denver, CO(USA), and at the "New York State Health Department Conference On Dementia" in Albany, NY (USA).
The original presentation was in "power-point" format with slides/overheads.
In his book titled A Path With Heart, Jack Kornfield writes: "We may or may not be able to change our outer circumstances, but with awareness we can always change our inner attitude, and this is enough to transform our life. Even in the worst external circumstances, we can choose whether we meet life from fear and hatred or with compassion and understanding" (p.276).
"Even in the worst external circumstances, we can choose " What powerful words! What an empowering thought! For me, as someone diagnosed with early-onset Alzheimer's disease, this perspective has become an important part of my way of thinking about life, about my vision for high quality living with a low quality disease.
I will be reading most of my presentation to you today since many of the skills it takes to present well from notes are some of the very capabilities being lost to the disease.
PRIOR TO THE DIAGNOSIS
From the beginning of the 1990s, my wife Sylvia and I increasingly cared for my father and mother who entered their 90th years with multiple medical problems, including dementia. We learned by the seat-of-our-pants all aspects of care providing at home as well as in the hospital and nursing homes, of challenges such as toileting and bathing, hallucinations and wandering, of making hard medical decisions, and on and on. Looking back, we also learned a lot from my parents about "how to live" in these times of extreme life challenges.
During this time I faced two major medical concerns. In 1996, I was diagnosed with a rare and incurable cancer, a lymphoma called Waldenstrom's macroglobulinemia. I've had chemotherapy twice; I expect more in the future. Yet, it is six years from diagnosis so Sylvia and I have much for which to be thankful.
Then the following year, 1997, I had an urgent craniotomy for a brain tumor. Only partially removed because of its critical location, the meningioma is slowly returning and future surgeries are anticipated. I daily medicate for seizure control. Yet again, Sylvia and I have much for which to be thankful. Just to be here and be able to talk with you, for example, is a wonderful gift.
Also, in 1997 my primary life career ended. Though only three years after receiving my doctorate, still feeling at the height of my career as a college counselor and instructor, I found myself having endless problems with remembering people and names, with not communicating well, not being able to follow the train of thought in meetings or in counseling sessions. I was not doing my work well. I thought I was becoming a lazy thinker; maybe I was burning out. The problem was unclear, but I knew something was not right. So I took an early retirement. My career abruptly came to a halt.
THE DEMENTIA DIAGNOSIS
What I was to learn in the next six months was that it wasn't a lazy mind or burn-out impacting on my life, it was rather disease, the dementia called Alzheimer's.
Numerous steps led to the diagnosis. After first visiting my general practitioner, I then saw the neurologist I had seen for the brain tumor. Both, thankfully, listened to me and took seriously what I told them about my experiences. Various tests were given; each eliminated a possible cause for the cognition problems. I next took a series of neuropsychological tests which revealed specific cognitive deficiencies, non age related, deficiencies which corresponded to the problems in my daily living. Still unable to identify a cause, I then had a SPECT scan of the brain, which now revealed causal information. A region of the brain was not functioning correctly processing glucose and oxygen. The pattern of dysfunction is consistent with probable Alzheimer's disease.
The disease is labeled probable since the only absolute certainty is autopsy, as you probably know, and I wasn't ready for that. The diagnosis is considered early-onset, since I was only 57 years old (early-onset is diagnosis before age 65). The disease was and still is in early stage. As such, I still retain many capabilities. Unlike common stereotypes of people with Alzheimer's, there are many people being diagnosed early who continue for many years competent in many ways.
Unimaginable, unwanted, unacceptable. Yet I now had an explanation that began to make some sense out of what was going on in my life. With this knowledge I could now move ahead with life, not just floundering, but working at finding the best ways I could live making the most out of the life that I had.
There are benefits to early diagnosis, I believe. (1) One is the opportunity to benefit from medications. While not a cure, current medications often help maintain stability for a period of time. I take Aricept and Vitamin E. (2) Second is the opportunity to access support services, such as those of the Alzheimer's Association, one such service being early stage support groups. For computer users, there are other resources such as the Dementia Advocacy Support Network International (DASNI), a network of people with dementia. (3) Third, Sylvia and I took care of many family matters together, such as updating our will, making out a living will, and doing financial planning). Still being competent I could participate fully in these decisions. (4) And fourth, one can begin to work on making adaptations (I will speak more to this later).
If I had not had the diagnosis so early, and instead spent energy fighting against the cognitive changes, living in frustration over making errors, always trying to hide what I no longer could do, my quality of life would certainly have been lessened. Early diagnosis can be a key to creating high quality living.
THE JOURNEY WITH ALZHEIMERS AS AN ONGOING CONTINUUM OF EXPERIENCES
The journey with Alzheimer's is a continuum of experiences. I see each step in this continuum as a normal human experience. Movement back and forth among steps is also a normal experience, as one progresses through the disease. At which step a person chooses to spend most of their time, though, often dictates the quality of the life they will experience.
With diagnosis, denial of the disease often happens first. Even before diagnosis, it is so easy and common to deny that changes are taking places, that losses we are experiencing are real.
As this reality sets in, so too may feelings of "anger" - anger at one's self, at life, at the disease, at God, and sometimes anger without an object. Anger may show itself in outbursts in some people, in subtle manifestations in others.
Then there is the experience of fearing. Unknowns abound for those of us with Alzheimer's - unanswerable questions of when will it get worse and how will I cope and how will my loved one's cope and what will happen to my friends and will I lose my identity and on and on! No cure. Deterioration the only known future. Progression a given. A society bubbling over with biases and stereotypes. The public and many professionals alike often speaking only about the person's losses and not what is retained. Negative labels about dementia everywhere. What is there not to fear!
Yet, one can choose to move from fear to the experience of grieving, grieving current losses as well as those to come. In grieving the person can begin to let go of denial and anger and fear, and move on with life. JoAnn spoke of the "good grief". To me, this is the "good grieving", the letting go of what "has been" and moving on to living well with what one has in the present.
Living well happens when one begins to experience "acceptance" and then "advocacy". In acceptance the disease has not changed, but the individual's attitude toward the disease has changed. In advocacy the person begins to have a sense of being a survivor, of advocating for one's self as well as for others, even if only in some very small way. In "acceptance" and "advocacy" is high quality living.
This leads me into sharing with you now some ways I find useful for creating high quality living.
PERSONAL THOUGHTS ON HIGH QUALITY LIVING
At the core of high quality living is "the spiritual". I find rich meaning in the words attributed to an ancient sage: "Guard you inner spirit more than any treasure, for it is the source of life."
I think of "spiritual" as the way we experience our daily living. I think of the "spirit" as that life within us that emerges in this experience. So the inner spirit is the "source of life" within me, that vital force guiding how I see quality living with terminal diseases, how I understand the Alzheimer's, how I mold attitudes. I see inner spirit also as where God resides in me. Guarding the inner spirit and nurturing the spiritual happens in a multitude of ways: through people, through reading, through beliefs and faith and religion, through nature and music, through most anything around me. To me, "spiritual" is the core ingredient to creating a quality life.
Acknowledging the circumstances of Alzheimer's and experiencing the accompanying feelings, allows me to let go of what I don't want and to move on with living well. It's not always easy. Some days I start out in the shower full of energy thinking I can tackle the world, denying the Alzheimer's. Then later on in a conversation which I can't handle or instructions I can't follow or a problem I can't think through, I am brought back to reality. Yet, I move on. What helps me to move on is realizing that to be stuck in negative feelings is a miserable place to live. And I just don't like feeling miserable.
Living "in" the moment fully is to live not clinging to past realities or to future dreams, but living fully present in today. My being with you right at this moment is what is most important for right now. This perspective helps me greatly live each day well with terminal diseases. Mindfulness meditation has helped me learn the richness of the moment. [Note the book Wherever You Go There You Are by Jon Kabat-Zinn]
I have grown close to the philosophy of always seeing myself as doing the best I can at any given time with what I have at that time. Instead of wasting energy comparing myself to "the me" of the past and instead of bemoaning what I could have been in the future, I focus on the now. I can't counsel or teach as I once could, but I can share my journey in talks and in writing. This philosophy is also helps me to understand how others are relating to me.
About attitude. Setting my attitude is simply recognizing that while I may not be able to change the circumstances of my life, I do have the choice of how I will view these circumstances. While the cancer or brain tumor or Alzheimer's will not disappear, though there may be such things as miracles, my attitude toward the diseases is my choice.
About shame. Being embarrassed or feeling shame for something one has chosen to do which is appropriately shameful, is understandable. But to be ashamed for having Alzheimer's or cancer or ashamed of things I might say or do which are caused by the diseases, I feel is no reason to feel shame. When such feelings of shame might come to me (e.g. when I can't remember or say or do something most anyone could say or do) I recognize the feelings as a valueless societal bias, and let the feeling go. To hold on to these feelings of shame can only destroy the spirit, destroy my life.
About openness and sharing. Being open I never have to remember what I've told to whom. But more than that, I always feel free. Others also feel free to ask as much or as little as they like. Being open works when I let go of holding on to past images of myself.
Both in the giving and the receiving of support everyone benefits. Having early dementia does not preclude the person from giving support to others. And being open to receive help can be a gift to the other person who desires to care and share their love. I do draw a line, though, in the receiving: imposed help and the funeral parlor attitude of "Oh I am so sorry for you", just is not have a place in my life.
About relationships. At the heart of all of my relationships is the love and caring Sylvia and I share together. We also share the journey together. Sylvia is precious to me, a treasure in my life. There is also the love and caring of our grown children David, Deborah, our daughter-in-law Diana and precious grandson Derek. There is a long-distance brother who calls to check on me often and have some laughs. There is a long-time colleague and friend with whom I have lunch weekly. There are friendships, old and new. My point is that family and friends are important, so too is the nurturing of these relationships. Some people feel friends fall away with a dementia diagnosis. No doubt sometimes this happens. But I know for myself and from several others with the disease, friends remain friends and continue to share hobbies and play tennis and volunteer together. It can happen.
About life outside Alzheimer's. I work at maintaining a life outside the diseases. It is important to have hobbies and interests and activities that go beyond disease. For me this includes volunteering, writing, enjoying family, gardening, a garden railroad, genealogy, and others.
Then there is adapting. Knowing I can't change the Alzheimer's, yet believing that I still have choice over how I see the disease in my life, I am able to work at making adaptations on how I will live. To me this is rehabilitation. Some examples of adaptations are: learning to concentrate on one activity or thought at a time; carefully selecting daily activities, and concentrating extra hard in conversations.
About death and dying. Well, I've left death and dying for the end. How symbolic, I guess. Yet I think about death and dying as part of my daily living. Its not my focus. Yet to know the reality of dying as part of my life helps maintain a perspective that makes each day an important and precious day. If you haven't yet read the book by Mitch Albohm titled Tuesdays With Morrie, it is very much worth your time; Morrie helps bring death and dying wonderfully into life's perspective.
I leave you with several closing thoughts:
First, most often people who are diagnosed with early Alzheimer's or related dementia retain substantial capabilities and competencies. This number is growing, as today's trend is toward early diagnosis. Stereotypes of people with Alzheimer's will be changing. The voices of people with Alzheimer's will become mainstreamed. And the capabilities of people with Alzheimer's and related dementias can be wonderful contributions to the Alzheimer's community and to our communities in general.
Second, it is my deep and sincere hope that professionals in the health and human service fields develop a "listening ear" to people with early dementia. This ear focuses on what the individual retains and not just on the individual's losses. This listening helps to understand the whole person and what the journey is like for that individual. Important is not only the disease, but also the individual's journey.
Finally, what powerful words these are of Bob Dylan for those with Alzheimer's or related dementia: "He that is not busy being born is busy dying."
Early diagnosis does not have to be a "death sentence", a time to be "busy dying". Rather, early diagnosis can be an opportunity to take an outer circumstance one cannot change, and turn that circumstance into a new and meaningful life. This life is "busy being born" every day into some new venture, some new thought, some new dimension in quality living, no matter how large or how small that experience may be.
Thank you kindly for your "listening ear" today. I look forward to any questions you may have following our presentations. I would now like to present you with my good friend Trudi.