Tag Archives: dementia

“What If This Was Your Father, Doctor?”

“What If This Was Your Father, Doctor?”
© Dr. Rajas Deshpande
 
“Doctor, I want to know about this illness. I want to understand it” she said.
It had taken me an entire medical career and a lot of experience to understand this disease in steps, no neurologist in the world claims to have fully understood it. It was my duty to simplify things for her, but it was impossible to transfer years of knowledge and experience in few minutes. I decided to give it a try. If I learn to understand the patient and relative one step more, I will be a better doctor hopefully. This lady, with her Prada and Dior accessories, also appeared well educated.© Dr. Rajas Deshpande
 
“Your father has frontotemporal dementia, a condition that causes progressive loss of memory and abnormal mentation, thoughts, or behavior. This is because certain parts of his brain degenerate faster.” I started.
“One minute doctor” she interrupted “How does that explain why he starts undressing, passing urine anywhere in front of others, even children or guests? He uses such foul language sometimes”.
 
I hate being interrupted. Especially when someone butts in a second question before I finish answering the first. But I must accommodate the patient’s and the relative’s anxiety.
“That is because we have an area in the brain that controls our behavior, stops us from doing social-inappropriate things. This is why we stop from doing certain things in certain situations, while we retain the ability to do them in privacy. That is called inhibition. When those areas in the brain degenerate, there is thus a ‘disinhibition’, whereby the patient does not know what is inappropriate. Somewhat similar to losing mental control after taking alcohol”.
“So the blood supply is cut off in the brain?” she fired.
“I never said that. I said this is due to degeneration. The cells in his brain die faster. Although at this age loss of blood supply is an additional reason for worsening”. When you know too much of something, it is difficult to not confuse.© Dr. Rajas Deshpande
 
You know, I am no Mangeshkar or Tendulkar myself, but this is like asking Lataji “I want to understand music and sing that song just like you” or telling Sachin “I want to make a century like you right now. Teach me cricket in ten minutes”. What they have learnt in decades with extreme hard work cannot be taught / understood or explained in few minutes. I can explain it in a nutshell, but it is not possible to ensure that the relative or patient “completely understood” everything I knew. But then again, the better this lady understood the disease, the better she will care for her father. So I decided another approach.
 
“Ma’m, I request you to please read about this disease from these two websites. Then write down your questions and please book another appointment. We will save a lot of random discussion then.” I told her.
“Ok Doctor” she agreed reluctantly “But tell me what you would have done if this was your father. I thought that with so many advances and researchers, there must be some good cure by now for such diseases” she said. The hidden disdainful sarcasm didn’t escape me. I ignored it.© Dr. Rajas Deshpande
 
“Now please tell me the list of all medicines that your father is currently taking, and their doses” I asked her.
She emptied a huge bag upon my table, with over 20 medicines from different pathies, some unlabeled, and including some bottled oils. She started asking her father one by one, he wouldn’t reply.
“I don’t know doctor” she said, frustrated. “He lives alone near my house, and takes these medicines by himself. We lost my mom few years ago. I guess some of these oils are for his massage”.
Some of those medicines were past an expiry date. The old man hadn’t a clue what he was taking.
 
“But you just told me he has severe memory problems and cannot understand much” I questioned.
“Yes, but we thought he knew what medicines he was taking” she said.
I did not want to embarrass her further.© Dr. Rajas Deshpande
“Ma’m, wouldn’t it be better if you understood the daily necessities of your father before you questioned anyone else about his disease? You can ask the doctor any number of questions, it is my duty to answer them. But I would definitely not have left my father to look after himself in such a situation.”
“No, doc, we are looking for a care center for him already. I cannot look after him, I have my own family and the kids need all my attention”.
“Then please stop blaming the medical researchers for not finding a cure for everything. Please accept that everyone ages and needs care, the same care that you were provided as a child”.
I didn’t want her to be unhappy, it was also my prerogative to understand her situation. I reassured her:
“Please read about this well, and come back next week, I am sure that at least a few problems can be resolved. I want to help you and him”.
 
What would happen if there was a cure for everything? How many of them elderlies will be taken care of, provided for? How long will their children look after them? In most cases, even the healthiest of parents are considered a nuisance once they have grown up the grandchildren. After that, they become an irritating liability.
Then, the annoyance of having to look after them, the exasperation of even a small illness they may have, and the extreme anger to have to spend time and money for their healthcare / treatment is all unloaded upon the doctor. While we are learning to deal with this in our everyday practice, I have decided to spend an extra minute to educate the family about their own responsibilities in every such case. © Dr. Rajas Deshpande
 
As she left the room she asked “Doc, he is elderly, you must give him some concession”.
I smiled. This wasn’t a medical question. It was my turn not to reply now.
© Dr. Rajas Deshpande
 
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A Mother who killed the Wife

A Mother who killed the Wife
© 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.

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

The Tortured Beloved

The Tortured Beloved
© Dr. Rajas Deshpande

“I want to kill my father, Doc. Is there any way?” said the polished lady.

Used to a life full of shocks, cruelty and in general many negative shades of human behaviour, we learn to mask emotions to avoid turning off the patient /relative from telling us the whole truth.
This was a googly, and I made a conscious effort to retain my composure.

Thirty-something, very posh and from a high class cultured family, this lady was one of those who automatically garner respect of people around them. What she said didn’t fit in with the mental image she had impregnated upon my mind. Could she be one of the “PSY” cases?

“I live with two daughters aged 9 and 14. My mom passed away 10 years ago. My husband stays away as he cannot tolerate my father. My father was a military officer, retired with many honours. About 5 years ago he started forgetting things. We took him to many doctors all over India, they said he had dementia. Two-three years ago he started abusing in the worst filthy and obscene language we never thought he could use. He also started getting naked anywhere, and doesn’t care if myself, daughters or neighbours are around. He passes urine deliberately when in public and around us. He also makes attempts to sexually abuse us all, and tried more than once to grope the maids, who then left. We had a hard time when a maid filed a police complaint. I could not dump him as no one else can look after him. So I nursed him at home, and my husband who could not tolerate this daily abuse left us to stay in another state.” She started sobbing. All I could offer was a few tissues and a coffee.
I waited for her to speak again.

“I am sorry”, she said in a wet, guilty, embarrassed and one of the most pained voices I have heard. “I love my father as much as I love my husband. I could not dump my father. But then I cannot let my daughters go through this every day. They are terrified and have started behaving strange. We took him to many psychiatrists, and they gave medicines which kept him calm, but he developed too many side effects and could not move out of bed. Now he refuses to take any medicines and if we force him, he gets violent.” Again amongst sobs, she showed me her blue-black swollen shoulder.
“I have to tie him up to his bed and lock his room at night, but he keeps shouting. Our neighbours have started asking us to either dump him or move out of the society. The old age homes do not accept such patients.”
“I am a personality development counsellor, but my work is suffering now, I have lost my smile. I have lost my life. I cannot die, I have two kids to grow up. So I want my father to die. Is there any legal / medical way to kill him?” and then a volcano of unvoiced pain of years wailed out through her throat. She kept her head on the table and cried.

It was unprofessional, but I had to get up and pretend to wash hands just to be able to wipe tears in my own eyes.

Fronto-temporal Dementia, a cousin of Alzheimer’s dementia is a condition in which along with progressive memory loss, there is abnormal behaviour, delusions, sexual inappropriateness etc. It happens due to degeneration in some parts of brain. Progressive for about five-12 years, till patient develops some fatal complication.

This was not totally new. I remember many patients who are tied up at home, beaten up cruelly by their family, and left to die due to this kind of behaviour. This tragic management is also commonly meted out to many psychiatry patients who are burnt, injured with sharps, shackled and tied to beds / trees, kept with head under running water and even poisoned / sedated with herbal or even allopathic medicines to ensure safety of those around them.
Few years ago, one family of bodybuilders (all five brothers in land business) admitted their father with the complaint “he burnt himself with hot water in bathroom”. There were many bruises too. “He fell at home.” They told. When the sons left, the servant told the resident doc: “They (patient’s sons) threw boiling water upon his genitals after tying and beating him, because he tried to touch his eldest daughter in law”. This patient had severe parkinsonian features too, so was not able to move much due to stiffness. They had beaten him up and burnt him in that condition!

The lady in front of me regained her calm in few minutes. I explained her what many Neurologists and Psychiatrists may have earlier told her many times, about such being the nature of this disease. However, we have many safer medicines to control psychosis now. I wrote her a prescription and promised her that I will try and locate a “Care center” for such patients with this severe level of psychosis. There were none in that city. The next option was to hire a male servant and rent a small single room apartment with attached toilet nearby where she could shift her father. Sedatives (sleep medicines) at night were required.
Her husband shifted back. The family appeared to gradually recover from the mad-bad days.

As much as we need the doctors to explain the family about such illnesses, we also need to educate the society about such conditions, and care homes for these patients. Inhuman beating up, tying down, injuring, poisoning etc. humiliating fates by one’s own children is probably the worst that can happen to a human being.

When the lady came to visit with her daughters few months later, her cute daughters wished me mannerfully. We all grown-ups avoided the topic of “Sick Grandpa”. However, the 9 year old, while leaving, boldly asked her mom’s permission to ask me a question.

Then, looking straight in my eyes, the kid asked me “Doc, why did God do this to my Grandpa? Is it possible to cure him? We used to enjoy so much together, I was his dearest. It is ok if he hurts me, I want him back”.

I cursed my stunned wits. “He will get better soon, dear” I lied to the cutie.

© Dr. Rajas Deshpande