Transcending a devastating disease through exploration and discovery

By Helene Berger / Special to the BJV

Helene Berger will appear at the Friday, September 20 Knosh & Knowledge to talk about her memoir, Choosing Joy – Alzheimer’s: A Book of Hope, about the ways her husband Ady’s Alzheimer’s Disease diagnosis changed their lives. Writes Susan Wissler, executive director of The Mount’s writers-in-residence program: “Choosing Joy is a rare work in that it is both inspirational and practical. Beautifully written and organized, it is an account of commitment, courage, and hope...Helene and Ady’s story is a testament to the profound impact of love and patience and a beautiful example of a life well lived.”

About her journey, Berger writes: “Books on Alzheimer’s and dementia often describe the caregiver as having debilitating feelings of helplessness. My experience during the early stages was that even though I felt powerless to make the kind of difference that would stop or slow the disease, I was clearly not helpless. It is hugely empowering to understand that one might be able to alter the outcome.”

While Berger cautions that everyone’s experience of Alzheimer’s will be different, she will share insights gained as a devoted wife and caregiver that she hopes will educate and inspire others in a similar situation. Please see page ?? for details about her Knosh & Knowledge talk. For more about the book, plus podcast and television interviews with Helene, visit her website:

The following excerpts from Choosing Joy are reprinted by permission of the author.

A Friend’s Guidance That Helped to Sustain Me

I remember a conversation that helped to shape our lives going forward. This was in the early years of Ady’s incipient Alzheimer’s, before the official diagnosis, when I had probably expressed my concerns about Ady to none but my closest friends. We were out to dinner with a lovely couple whom we knew quite well. The husband was a widely published author and well-known authority in his field.  Ady, sitting next to him, turned and said, “So, Sam, what do you do?”

I blanched and tried to come to Ady’s rescue, rushing in to remind Ady of Sam’s prestigious accomplishments. His wife, Lynn, took my hand and said, “Helene, everybody loves Ady for Ady. Don’t try to cover for him.”

My eyes filled with tears. Living with the myriad problems that Alzheimer’s was already beginning to inflict upon us was hard enough. Trying to keep secret what had clearly become obvious to others only made it harder. Lynn’s guidance was my first step toward open, public acceptance of our new reality. It was easier after that for me to acknowledge our problem openly, to shed the burden of pretending that everything was normal.

Publically acknowledging what Ady and I were experiencing, rather than treating it as embarrassing and shameful, gave me enormous relief. It opened up new worlds of communication for me, enabling me to learn from others’ experience. Ady himself made it easier, as he began to admit openly that “My memory’s not so good anymore.” In the early years, we are often unwilling to acknowledge to our friends the reality of what we are living through. Though this may be understandable, it burdens us with an unnecessary level of sadness and pain. Just as important, we lose out on the wise counsel and compassion that friends can offer. In two six-word sentences, Lynn’s honesty and compassion changed my life. I shall always be grateful to her.

“Fight the Disease, Not the Journey”

I read or heard those words when Ady was first diagnosed: I jotted them down because they sounded interesting:, “Fight the disease, not the journey.”  At the time, I did not really understand what they meant, but gradually the concept became clearer.

The first part is obvious: we must fight the disease with every weapon we possess or uncover. We cannot take a back seat and watch the decline unfold. We must fight with full power and intelligence to provide the best physical and mental health possible, whether through new and ever-expanding medications, bringing more doctors into the loop, seeking appropriate help books, providing daily aerobic activity with a trainer or taking daily walks or a swim, or learning from other’s experiences in many different ways.

The journey is a far different matter. The journey, I came to understand, is the emotional side of the equation. It means drawing on all our resources to make the final years together as beautiful as they can be. It means remembering the love of past years and not trashing it now with annoyance, frustration, impatience, bitterness, or self-pity. It means being aware every minute that your loved one did not choose this condition ― for themselves or for you. It means reaching deep within yourself to empathize with what your patient is going through. If their memory fails them, we can connect to how we feel when our own memory slips, when we forget the name of someone we know well – the frustration and annoyance with ourselves and the doubt and uncertainty about our own minds. We can magnify those feelings many times over, imagining this loss as a constant state imagining what it must be like to feel diminished countless times a day, to have to depend on others for virtually everything when you’re used to running your own life. In doing so, we lay the foundations of empathy.

As some faculties are lost, new heightened qualities can reveal themselves. These, too, can seem like challenges at first, but they can also be opportunities. Yes, Ady’s memory was slipping ― but I found that his emotional sensitivity was greatly heightened. He reacted with uncanny awareness to the slightest hint of disappointment in me. He crumbled with any raised eyebrow or sharp intake of breath. I had to learn to refrain from any body language that suggested disappointment. This was far from easy, but it became easier with time. After all, this was the man with whom I had spent close to three-quarters of my life. If you are fortunate enough to be in a good marriage, there are harder jobs than giving your mate the abundance of love and appreciation and care he deserves. If your marriage is not ideal, this can be an opportunity to change the tone of your relationship.

The rewards of positive reinforcement were startling. I am convinced that the reason for his peace of mind and wonderful smile is that he was surrounded, not by disappointment, judgment, and annoyance, but by respect and appreciation and an abiding love from me, from his children, from friends, and even from the best of the caregivers that he needed in the last few years (whom he thanked a hundred times a day). People may experience loss of memory, of movement, of balance, of inhibitions and control. But they know instinctively when they are loved.

As time went on, I began to realize I was getting great satisfaction out of my new role. More and more, I discovered that those old thoughts of “Why is this difficult, ugly disease happening to my husband? To me?” were being replaced by feelings of satisfaction of being able to give him all the warmth he craved.

So today I would word the adage differently: Fight the disease. Embrace the journey. Embracing the journey invites you to use every bit of creativity to find ways to help your mate be the best he now can be; to encourage him to try areas he never ventured into before; to reinforce abilities that have laid dormant – with a musical instrument, with drawing, with singing or dancing; to believe that quality of life is still possible; to harness all that residual good in yourself and your loved one, and bring it to the fore.

This can be a difficult approach to accept. In the months after Ady’s diagnosis, I found a rare guide book expressing the notion that life with your loved one could be deeply gratifying, even a time to explore new avenues, and a time of creativity. At the time, that sounded so preposterous that I was furious. These books were often written by doctors who had, I thought, no experience of living with a spouse afflicted with Alzheimer’s. Why would they give such false hope? How could they make such Pollyannaish statements without living through it themselves? How could this possibly be a happy time? I apologize for my lack of faith. Over the years, this initially terrifying period turned into a tranquil, nurturing time of exploration and discovery. It became a time of peace and acceptance.