Foreword: Hi, I am Pavithra Kalale, a ghostwriter who came out of hiding! I did so that I could help a friend of mine by publishing the article I rewrote for her. Consider this her narrative and not mine as she was the one who originally recorded her journey.

An Emotional Journey of a Daughter Surviving Her Father’s Neurodegenerative Disease!
Hi, I am Bhuvana. I am the daughter of the world’s best dad (Isn’t that what every daughter believes?). But he was indeed the best, and this is the story of my dad, the funniest, the most easy-going guy I have ever met.
His friends and everyone he knew would agree with me, no doubt! And his story, true to the end, was an homage to courage. My family and I lost someone special and yes, my father is no more.
It has not been long since I lost my dad to a deadly disease. It was extremely difficult to articulate my experience in words, even though everything remained fresh in my mind.
I am not sure why I wanted to record, journal, or write this piece. But in the end, it turned out into this article. Maybe I wrote it to process what I and my family went through or to help someone on a similar journey, someone in our situation.
For whatever reasons I started doing this, I know it was important for more than a single reason. And, that reason could be different for everyone reading this.
Dealing with a life-threatening illness is hard on its own. If you’re reading this to understand how to survive a diagnosis of a degenerative disease of your loved one, in your family or circle of friends, I hope this helps.
I hope it helps you understand how difficult the entire journey can get and yet you live through it with moments that make it slightly easier. Maybe the purpose of this write-up is for you to know you are not alone.
Whether you are a patient or a caregiver, with a clear diagnosis or not, know this: We are all in this together. So, let me begin with where it all started. My father started complaining about giddiness.
7 years ago: Where it all began!
My father had an undiagnosed eye condition, making him blind at night and slowly taking up his remaining vision in the daytime. And yet, he was one of the strongest, funniest, and most thoughtful persons I know who never let his blindness define him.
Fast forward to his late 50s, he expressed a sudden fear creeping upon him that his world would ultimately go black. We did not get the seriousness of it until a symptom of vertigo popped up and never left. He had frequent falls and accidents because of this!
We started seeing doctor after doctor for answers. Visiting doctors soon became a way of life for his remaining years. Looking for some solution at this point to reduce the giddiness, my dad and I went to see an ENT doctor.
Miraculously and thankfully, a nurse there caught my dad’s irregular pulse. It was at a crucial stage already and required immediate treatment.
At the time we thought this was it, the heart did not pump properly; Less blood led to less energy and, hence, the giddiness. The conclusion was so simple; Bring his pulse to normal, and bye-bye giddiness.
And the only solution suggested for his irregular heart rate was a pacemaker. The surgery went well, and all was supposed to come back to normal.
But we observed my dad showed his initial signs of disorientation at the hospital. However, we brushed it off, thinking it was the new environment, tension because of the surgery, and deteriorating vision.
We finally thought we had reached our solution!
The Early Stages — The Appearance of Symptoms.
The disorientation that initially appeared after his heart surgery and which we had brushed off to be nothing back at the hospital reappeared. The confusion became more prominent, even at home.
It intensified over time, anywhere from forgetting where the washroom is at home to an inability to fold a blanket. With these new symptoms, the visit to the doctor resumed, and this time to a series of neurologists.
Neurological examinations are a different game altogether. Loads and loads of questions and doctors later, one doctor started him on steroids as part of a differential diagnosis.
I still remember the day he started those medicines, and he was ‘normal’ again. I put that in quotes because what’s normal changed pretty quickly. Soon it leveled up to visual hallucinations, blackouts, and confusion — and giving him a new set of problems.
We had to taper and stop steroids, which was very difficult for all of us. I say it was difficult to discontinue the steroids as it meant neither the medicine worked for my dad nor was his diagnosis complete.
There was a lot we did not understand and remained uncertain. A new pattern had set, visiting doctors, and dealing with constant uncertainty. Through all this, my family and I failed to notice that we were losing my dad.
Multiple visits to the doctor continued, and after multiple examinations, my family and I dreaded the worst. And the day finally came when we were off to the neurologist to get a diagnosis for Dad’s condition.
And it hit us from nowhere — a diagnosis of a degenerative disease!
Dealing with the Diagnosis of a Neurodegenerative Disease.
It felt like a new age had begun, and we were on a new journey altogether. And, starting the new journey with the diagnosis, there was no such thing as sitting back down, discussing a plan of action, and dwelling on caretaking.
Because this disease progresses quickly; Quicker than the time required to understand what’s happening! Quicker than what Dad could process or comprehend everything about himself and the situation.
When the doctor discussed the diagnosis and gave us a picture of how my dad’s life and ours might look like with time, it was a lot to grasp. I remember having this conversation with my brother and telling him we shall share only bits and pieces with both parents and ease them into the truth. We were trying to prevent them from panicking, and it was a stupid plan!
Not knowing how fast degeneration happens, there was nothing to hide. Telling everything to our mother only strengthened us as a family. It also gave strength to my dad to power through this.
I started educating more about degenerative diseases. Lewy Body Dementia, in particular, as it was my dad’s diagnosis. I am providing a reference link at the end of this article for further reading about the diseases.
Neurodegeneration is not reversible or curable. Hence, doctors aid in managing the symptoms or delaying further occurrence of it. As the neurodegeneration progresses, the symptoms along with it develop and grow severely.
This neurodegeneration is faster in Lewy Body Dementia. Compared to other neurodegenerative diseases, such as Parkinson’s, the End-Of-Life (EOL) span varies. For Lewy Body Dementia, it is between 3–7 years.
With time, this neurodegeneration leads to improper functioning of body activities. From speech, movement, balance, breathing, and heart to other life-threatening circumstances.
I hope you get an idea of why neurodegenerative diseases are extremely difficult to deal with and handle. Living it, in reality, provides its own insights.
I am sharing all of it here and hope to help you, as a patient, a caregiver, or a loved one, to plan and prepare for your next steps.
The Treatment Plan — After the Diagnosis of a Neurodegenerative Disease.
As I mentioned earlier, the disease has no cure. Hence, the treatment plan was all symptom-based. So what that meant was specific medications to deal with particular symptoms.
But again, these medications also come with their own side effects! One of the major symptoms of LBD is hallucinations and since Dad had vision loss too, he was more prone to it.
The doctor worked out the perfect amount of medicines for Dad, along with physiotherapy. As the condition progresses, symptoms keep worsening and, inevitably, medicines have to be increased accordingly.
At one point, the side effects were bothering my dad more than the medicine’s being helpful. That’s when we added homeopathic medicine to help with the situation.
As skeptical as I was, it helped. With Homeopathic medicines in the equation, Dad had a better quality of life for a longer time. However, the condition further progressed to an extent where we couldn’t do anything anymore.
No combination of medicines worked, no physiotherapy, none of it was helping him anymore. When nothing more helped, that’s when we leaned more towards keeping him as comfortable as possible and considered stopping all aggressive treatments.
But what does it mean to stop all treatments? How does one even decide to stop fighting? What is the next course of action if we decide to stop the treatment? More such questions only led us to one thing in the end: Palliative Care!
What is Palliative care?
According to Oxford Languages, Palliative Care refers to the care provided to the terminally ill, especially through an organized health service. It is the care provided to the patient to improve the quality of the End of Life (EOL) experience.
It works by treating the person to ease the pain or discomfort they are in, but not treating for the disease or its development, not the course of the medical condition itself.
Palliative care is a way to improve the quality of life, not just for the patient, but also for the quality of life of the family. The care is through a set of specialist doctors and nurses. When Palliative care is for the terminally ill, one refers to it as ‘Hospice’.
Hospice aims to provide symptomatic support to the patient, along with spiritual and emotional support, including to the patient’s family.
The Hardest Decision of Opting for Palliative Care!
We knew nothing was helping him anymore. With worsening symptoms and Dad himself begging us to stop the medications and to let nature decide, we knew we were only grasping onto hope!
But to stop the treatment meant we were stopping to fight for him as well, wasn’t it? He believed it wasn’t a battle at all. But, we were still holding onto the tiniest ray of hope (Can we even refer to it as hope? I am not sure anymore!).
Treatment withdrawal was the toughest choice we had to make. In all of our mental turmoil and conflict with our hearts, what helped us get the perspective we needed were these exact thoughts:
“The treatment is not helping him get better and with the treatment, we are only prolonging his death.”
This dark but realistic view of the situation gave us perspective. It made us look into what we were making Dad go through! And it helped us see why palliative care was better than active Vigorous treatment.
Thus, we stopped all medications (about 15–20 / day) for nothing. Absolutely nothing! I cannot imagine what he must have felt, but he said & I quote:
“I feel so light, the body from inside; thank you.”
His relief breaks me even today for deciding so late on palliative care! When we knew it was over, what were we holding onto? Why are these choices so difficult?
It is never a simple logical decision, though. It weighs you down. And yet, as a family, we decided together and aimed at improving Dad’s EOL experience and not treating his disease.
The Bed-ridden Stage: Coming to Terms with the Difficulties of Palliative Care.
When we stopped all medicines, Dad knew and noticed it. But did he know what it meant? I always think about it from time to time. Does it mean he knew death was coming?
Or did he just accept that there was nothing more that could be done? The questions remain unanswered to this day!
Palliative care set in a period of uncertainty. Uncertain when death would come knocking at our door. But I believed Dad would at least have a peaceful death.
Alas, that wasn’t the case. Stopping the medicines had consequences that were not just physically difficult for Dad but also emotionally difficult to bear for myself and my family.
Without the medications, Dad was bedridden, and being in bed all the time resulted in bed sores! We dealt with this consequence with the help of an air bed and it was manageable.
But what devastated us was the bigger monster: Aspiration!
Aspirations had its own set of brains if you ask me! A sadistic one at that, as it stopped my dad from enjoying the things he loved! He was a foodie and a coffee-lover and he choked on the things he loved!
This was heartbreaking to watch for two main reasons:
- A foodie or better even, a food addict could not enjoy his food!
- We had to control his diet and not give him the things he loved!
It was based on the doctor’s advice and direction that we changed the diet. We only fed the things on the doctor’s list! By now, Dad was in and out of consciousness and he hardly noticed all of this.
We fell into a pattern of taking care of Dad and ensuring he was peaceful and comfortable. And gradually, Dad started losing weight. With time, Dad’s speech declined, there was a stiffness in his tongue, and his ability to even communicate through actions also dropped.
What else was I expecting? The doctor had already warned us it would be extremely difficult to watch! But, we all knew this was the best decision for him!
After a point, the only consistency Dad could withstand was drinking water! As I mentioned earlier, aspirations had a cruel brain of its own! There were days when even water wouldn’t enter easily because of severe aspirations.
This led to the next tough call we had to make; Do we opt for a Respiratory Therapist (RT) or not? This was to ease Dad’s breathing using external aid.
But, compared to stopping all of his medications, this was an easier choice to make. Relatively speaking we decided to not go with an RT.
The once jovial, easy-going, cheerful person was now only a body with a “Lewy-bodies-filled” brain. A body that only looked like my dad and just that!
Because by then Dad was no longer Dad, but just the disease by then! Was this how it would end?
Dad’s Journey Nearing End Of Life (EOL)
Amidst all this, my dad became conscious for a long time and asked for Puri. He put all the energy he had that day into eating the Puri. That day, I understood he was satisfying his soul.
If I recall right, that was the last he ever spoke in sentences! The last he held a conversation! This day had been one of the happiest for a while for us. It still is, and we recall it so fondly, even to this day.
The most challenging thing was to watch him perish day by day and inch by inch. Isn’t it easy if it all gets over in a moment? Or a day or even a couple of days?
But then that body’s reflex is to keep it alive and working. That is its duty until it cannot anymore! After all, it took 9 months to be made, so it will take time to shut down too.
Coming to terms with how things were going, we began mechanically caring for Dad! But emotionally, we were all dealing with Dad’s loss! It was sad. He was still among us! Was that right of us to do it?
I don’t know if it was right the thing to do or not, but we used to cry for Dad when he was right in front of us. How did this happen?
On the inside, it was an emotional roller-coaster, but on the outside, it looked like we were just taking care of Dad. Feeding him water and just wiping his face!
Remembering where it all began when I kept insisting he stand upright until he recalled:
- All the numbers from 1 to 100
- All the districts of our state
- What he had for breakfast
To keep his brain active, as much as possible, was no more relevant. Those tasks I was so particular about, as if the prize was his life and what my dad referred to as tortures, were nothing in the end!
Merely keeping him as comfortable as possible was the only goal. Palliative care was the toughest thing we had to choose on this journey.
Withdrawing from giving treatment because it’s not working anymore, for whatever reason, is difficult. Yes, it was for his comfort, and yet it didn’t make it any easier.
In between documenting all the signs and symptoms, dealing with his health issues, and maintaining his quality of life, making a list of complaints to tell the doctor, I never realized when exactly I lost my father.
The father who he was…We lost him one fine day, and he is no more now!
My Final Thoughts — From a Daughter who Lost her Dad!
I lost my dad. However, the emotional journey continues. It is still fresh for our family and we are all still dealing with his loss. It is going to take its own sweet time.
We blame ourselves for being impatient with Dad then, when we were mentally and physically tired. After all, we are all humans and these things happen, right?
But, we still find it difficult to accept and keep thinking about how we could have done better! Even after we did our best! So, I believe I am gonna end this write-up by saying; that you are not alone in this!
Let these be your takeaways:
- Finding a doctor who understands and truly listens to you is crucial. The doctor may see such cases daily, but, to the patient and their family, the entire world turns upside down.
- If you are a patient reading this, know that there will always be someone to take care of you until the end, be it your family or a loved one.
- If you are a caregiver, a family member, or a loved one reading this, please go easy on yourself and don’t blame yourself for things that are not in your control. We all know you are doing your best!