© Dr. Rajas Deshpande
“He is angry with us, doctor. He refuses to recognize us, even his parents and children sometimes. It was all my fault, I fought with him so many times over small things. I have said sorry so many times now.. But he is not ready to talk again like he did.. Some doctors said he is in shock, some advised psychiatric treatment. We did all we were told, but he is worse by the day. Please bring him back, doctor!” said the extremely depressed and tearful middle-aged lady. In her lap was a five year old daughter, seated behind her were her in-laws (patient’s parents) and her elder child, a 9 year old boy. My professor was listening carefully, and we Neurology residents were juggling possibilities in our minds.
I was assigned the work-up of this case. After a week-long evaluation and opinions of some senior neurologists in Mumbai, it was concluded that he was an exceptional case of early-onset Alzheimer’s disease. The patient Mr. Bhooshan, an electrical engineer, was about 39 years old then.
Every morning that I entered the ward, I found his wife begging him to forgive her and talk normally again, he looked at her blankly, often irritated and with a questioning face. She would bring the kids to him every evening, and prod them to talk to him, crack jokes, and in general “get him to talk”. He would occasionally call them near himself, pat them, then suddenly vanish mentally from the scene. He sometimes asked his wife about them by names, but didn’t always recall the names accurately. Somehow, children sense moods excellently. They tend to know when a parent is disinterested / hurt / tired or ‘just not there’. These kids did whatever their mother suggested, but they were ok with just sitting by his side, in his lap, holding his hand.
I never saw his aging parents without teary eyes that begged for relief from this hell.
We have different memory areas in brain for sights, smells, words etc., as well as disciplined cascades of time-based memories in our mind. A large part of this is what we call the “Past”. Hidden therein is also our knowledge of ourselves: Name, Birth, Family, Culture, Religion, Education, Friends, Nature, everything that makes someone’s personality unique to them.
Imagine losing parts of this memory. Imagine not knowing who you are. Imagine being lost “Inside” your own mind. Then also imagine ‘not even knowing that you are lost’. It is only initially that the patient knows and cares about such loss of memory. Unlike dramatic depictions of “violent anger because of forgetting things” in some unstudied movies, patients usually also lose their concern / insight about what is happening to them.
There is a point of no return in the mental / cognitive decline in patients with dementia / memory loss, comparable only to the death of one’s mind as one knows it. Scary.
Relevant medicines were started. There was negligible response.
Mr. Bhooshan gradually became almost blank, and spent most of his day in the bed, often wandering aimlessly and watching windows in the ward. His wife couldn’t come to terms with this. She mostly just sat in a corner, often crying whenever kids visited. Right from Prayers to Herbals, everything that anyone suggested, was being done by the family.
Our counselors talked to her, even prescribed her with mild antidepressants, but she had just collapsed inside.
One evening, I didn’t see her by the patient. Curious, I enquired about her to the patient’s mom who was instead attending him. “Their daughter, the 5 year old, is admitted in the pediatric ward below with high grade fever. She is with her.” replied the old lady.
I went to the pediatric ward after finishing my duty.
I found the kid in bed, weak but comfortable, and smiling. Her mother, the patient’s wife, was telling her funny stories, laughing aloud and imitating comical characters, as she fed the child. Mrs. Bhooshan was a totally different lady then. She talked to me very nicely, without any hint of ‘hiding sorrow’, naturally. The innocent, happy kid invited me to sit by her and share her food.
In two days, the kid was discharged. Her mom had completely changed. She started taking good care of Mr. Bhooshan again, but now with a mysterious peace upon her face, often smiling and mothering her husband too, like her other kids.
Satisfied with the sacrifice that this ’mother’ had made by killing the ‘wife’ within herself, life had smiled upon them again, in the face of an obvious tragedy. They returned home, and she was still nursing him and looking after the kids one year later when I passed my exams and left Mumbai.
Their life had changed, but moved on.
So had mine. I started writing a diary.
Dr. Rajas Deshpande
Truth, name changed.