A View From Within: Living with Early Onset Alzheimer’s

SCOTIA - It is even worse than being forgetful. It is having the presence of mind and capacity of memory, to remember that something has been forgotten. And a gnawing feeling that all is not right.
For Thaddeus Raushi - a man whose career has been in communications - it is especially frustrating that the skills of communication have been taken away.

“It takes a great deal of work to do what in the past seemed to come so naturally,” Raushi says.

The Rochester native and former college counselor has spent most of the past 30 years in Scotia. The last six have been in an attempt to accept the changes that life has demanded of him, when the “simplest” things like counting change at a grocery store, remembering a telephone number, or correctly reading a restroom sign have suddenly become a challenge.

Between 1996 and 1998, Raushi was diagnosed in consecutive years with cancer, a brain tumor, and “probable Alzheimer’s disease.” He calls it a three-ring circus out of control.
During the Christmas holidays in 1996, Raushi and wife Sylvia visited their daughter in San Francisco. He started feeling an unusual lack of energy. When returning home to the Capital Region, he underwent a series of tests that determined the cause of his symptoms as a form of lymphoma. It was a cancer called WM (Waldenstrom’s macroglobulinemia).

He underwent treatment that included chemotherapy, medication and a special diet. A few months later, in early 1997, a brain mass on the occipital lobe was discovered, and diagnosed as a brain tumor - meningioma. Twelve months later came a third diagnosis.

“It must be something about the early months of the year, the doldrums of cold and slush, the dark nights,” Raushi surmises about the experience. He was told that he had what is called “probable Alzheimer’s disease.” “Another diagnosis! Another no-cure disease!” was his response.

But he refused to play the role of victim.

A year later, he looked backed upon his fate. “1999 was a new kind of year for me. It was a year of no new diagnoses. And so I rejoiced,” he says, and put pen to paper to document his journey. He did it to learn more about himself, as well as to share the experience of living with the disease with others in similar circumstances.

“Most everything was written ‘about’ the person with Alzheimer’s with only a small handful of books written ‘by’ people who have Alzheimer’s disease,” Raushi says. “Reading through the literature was like being in a world where everyone is talking about me but no one is wanting to hear me speak.” He also felt the need to get his thoughts on paper quickly, while he still could “in some understandable way.”

The book took a year and a half to write and has been published by the Northeastern New York Chapter Alzheimer’s Association. It is called “A View From Within: Living with Early Onset Alzheimer’s.”

The book’s dedication page cites a Bob Dylan quote that mirrors Raushi’s life philosophies: “He who is not busy being born is busy dying,” it reads.

Raushi details his life with “early onset, probable Alzheimer’s” disease and the adjustments he has had to make. Throughout, there is a blooming embrace of a new life philosophy. It is one that grows an appreciation of what every day brings, a celebration of the people in his life as a gift, and the wonder of being a part of a vast, inter-connected human universe. Raushi has also learned to live in the moment. “Today is today. So I must search out and take on my attitude for what exists today. Tomorrow I will work on tomorrow’s attitude,” he writes. “That is my hope for each of you, as well, whether or not you have Alzheimer’s.”

It is in times of crisis and illness Raushi says that one begins to learn of life’s truths and importance; what has “true” meaning. What is worthy of time. He also tries to not be fooled by the mirror. Appearances can often be deceiving.

“People wonder how someone can appear so healthy and yet have cancer and Alzheimer’s disease. Cancer can be hidden. Early onset Alzheimer’s, as well, can be invisible,” he says.
It is both a blessing and a curse. On “normal” days, looking in the mirror’s reflection, balancing a checkbook, or performing business oriented tasks, Raushi says he gets that “twinge that this Alzheimer’s stuff is not accurate.”

Inevitably however, there are those other days when the reminder of the disease is brought home. “It is where there is a sense of total blankness,” he explains in his book. “There is a void. It is a loss that is accompanied by no sense of how to resolve the problem, how to think, how to get what you need, what to do at that moment.” It is on these days that he knows something is not working right. “I do not feel normal. I do not feel my ‘self.’ It is like there is a different me, a new ‘self’ (that) I must grow to know, because it is the only one I’ve got.”

There is also fear of the unknown where the future is involved. “Will I someday be uncontrollable, not know what I am doing (or) say words over and over and over, or not be able to speak at all?”
It is these times that are filled with fear, embarrassment and self-directed anger. “What was I thinking? How could I be so sure, and so wrong? Am I losing my mind?”

Part of the learning process is recognizing negativity as a presence, but only addressing those thoughts that are useful. As Raushi puts it, “Seeing what I am now, what I have now and what opportunities there are that can fill my life and give it quality.”
He has found solace in support groups, alongside others with similar experiences There are also medications, therapies and daily meditations. While Raushi knows there are no cures, he is hopeful that research efforts are striving toward effective treatments and eventual cure.

“The research is moving ahead quite rapidly. There is more emphasis on early diagnosis - working to identify people even before symptoms show up.” These are an awareness of mild cognitive impairment, when the decision-making ability is slightly affected, but yet to be identified as a disease.
“There also is an increase in the number of medications available to maintain some stability for a period of time,” Raushi says. “While there is no cure for Alzheimer’s at this point, there’s a real thrust to look at early diagnosis, to try and understand it.”
Raushi explains his experience in terms that a non-Alzheimer’s person could understand.

“We experience a gap. A real blank on how to move on next in our thoughts,” he says. It is a struggle for him at times to maintain his train of thought. Raushi determinedly sticks with it and the words come.
Talking to you right now, I have to work much harder. As a teacher and a counselor, this is what I did - communication. But now I have to work very hard at it, and there is the lack of being able to pull the word out of the thought,” he says. “Sometimes it’s slight and sometimes it is more extreme. Some days are good, some not so good.”

He says his wife Sylvia, who he refers to as “that very special person in my life,” best coined a description of what he was feeling. She calls it “delayed thinking.”
Still, his high spirit and positive attitude are part of a determined resolve, although it does create surprise among some he comes in contact with.
“People ask me ‘What’s the magic?’ Well, there really is no magic. I think: ‘do I want to live feeling miserable about what I can’t do?’ No. I think we have a choice. Let’s look at what we can do.”
Raushi hopes the book can be a source of comfort to families in similar circumstances.
“My heart turns to those in my life who are affected through me, to my children, and my grandson,” he says. “Also to the children and grandchildren of others with these diseases.”
He is an active volunteer with the Northeastern Chapter of the Alzheimer’s Association and continues to be an active speaker, advocating awareness of Alzheimer’s and of cancer.
These days, with the release of his book, he’s also a published author. “Sometimes as I’ve reread what I’ve written, the experiences sound as though someone else is speaking to me,” Raushi says. “It’s also good to have a laugh now and then at what goes on. We need to laugh at ourselves; when you think about it. Whether with Alzheimer’s or not, we are pretty funny creatures.”

by Thomas Dimopoulos
The Saratogian, 2004