Shivani Maheshwari, our editor, who interviewed Jyoti Joshi, a caregiver to her husband with Alzheimer's disease, shares her perspective on the book and why she recommends it.
Alzheimer’s can be a difficult disease, both for the patient and caregiver. As patients lose control of their cogntive abilities and other abilities, the challenges of a caregiver multiply manifold. It is agonising to see a loved one crumble, waste away and eventually succumb to this progressive neurodegenerative disease for which there is not treatment as yet.
Jyoti Joshi in her book ‘Journey of Seven Steps’ writes her memoir as a caregiver to her husband diagnosed with Alzheimer’s Disease. She gives a poignant close-up, all inclusive experience as a caregiver with emotional hardships and hard knocks. Her narration is insightful, accurate, and real-life, based on her personal diary that she would maintain since a young age. Being a gifted writer, she noted every minor details through her husband’s illness, capturing not only his agonising disintegration, but her own sensitivities spiralling out of control. She talks about the diagnosis, and initial difficulty in accepting his illness, and how through 7 years as caregiver she saw him slip out of her life, despite her desperate attempt to hold onto to her husband. She writes about the innumerous times when she had to grapple with her tears, anger, frustration and anxiety.
Read PatientsEngage interview with the author here
As the reader gets intertwined with her life, what makes it heart breaking is her constant juxtaposition to her happily married life, setting up home in America, their travels and adventures around the globe with their two daughters, the joyful pre-Alzheimer’s days. Needless to say, she was shattered to see her husband, an accomplished mathematician, an adventurer, a person who loved life, being ravaged by the disease.
What makes ‘Journey of Seven Steps’ stand out is that it is a book for caregivers. It abounds in candid and personal perspective of a caregiver. Nowhere does the author shy away from laying bare her deepest thoughts about the cataclysmic tempest that she is trying to fight and forestall. We get a first-hand perspective of the caregiver, with deep involvement, strong emotions and lucid portrayal.
Read it. This is a wife’s ode to her dear husband and her standing guard to her own heartbreak. There is love and learning.
Link to the book on Amazon here
Extract from the book
“Jyoti, now that he’s controlling your life like this, do you resent him? You have no freedom left. You must hate him.”
“No, never! I love him so much. He is ill. He never controlled me before. His Alzheimer’s is controlling him and that is why he acts like that, Kathleen. Our love is not so weak that I will ever abandon him or hate him.” Sharp words shot from the quiver of my mind. It was only a little after 3:30 p.m. when Kathleen left. Madhukar began pacing back and forth. He went to the living room and abruptly he stalled near the window. I thought he was looking out at the pink rays of sunset. But suddenly he pulled the shades down and zipped the curtain. Then he continued to pull the window curtains closed all over the house. The untimely darkness made me depressed, choking like a monster.
‘Why are you shutting the curtains? The sunlight is so limited in the winter’, luckily in time my lips also zipped the words shut and my mind drew the curtains of compromise. I figured that perhaps his own reflection in the window must have confused him and made him think that there was a stranger staring at him. I tried mightily to stay calm but at the same time all the worries of future put a heavy weight on my back. My strength started fading away with the vanishing sun on the horizon.
