Writer Deepali Raina speaks of the change she has witnessed in her beloved father who is suffering from advanced Parkinson's disease and the life lessons she has learnt along the way.
It is difficult to comprehend that the same lively man once brimming with energy—who could walk 5-10 km every day, take a bath in cold water, even in the harshest weather and had almost never taken any medicine—has today become almost like a 9-year-old child, who has to take a chunk of medicines with each meal of the day.
It is difficult to visualise this contrasting image but this is the reality of my sweet, loving father.
It started around six years ago, when his health started deteriorating, we consulted different doctors and got all the possible tests done. Each doctor prescribed their own set of medicines that would work for some days and improve his symptoms but no one has been able to identify the cause till today. Eventually, after some time, the diagnosis became clearer that my father is suffering from a degenerative health condition termed as advanced Parkinson’s disease. Since then, our life has been no less than a roller coaster ride.
Each one of us in my family has figured out different ways to deal with this situation. I also learnt some of the most amazing lessons of life that have rescued me in these testing times but before I take you through them, here’s just a glimpse of what my father was like.
We stayed in a small locality in Jammu where neighbours were like families. They would even safeguard your home when you were not around. My father was fondly called papa ji by one and all. As a kid sometimes I would feel jealous thinking — ‘he is my father, he can’t be papa ji for the world’. Slowly I realised that this man has so much selfless love and affection for everyone that confining him to just being my father would reduce his larger-than-life stature.
There would be long power cuts in our area and papa ji would become the radioman of the locality playing classics like Vividh Bahrti and Hawa Mehal. Sometimes, our neighbours would wait for the power cuts for this radio jockey to showcase his talents. Not to forget our home was like a picnic spot for all my cousins, for papa ji never scolded anyone, was happy giving pocket money, and would get the best delicacies prepared for all the kids every Sunday.
Born to working parents, I was fortunate enough to have seen my father interchanging roles in the kitchen, nursing my grandmother while my mom would manage all the market duties. Though their marriage does not look to me like the rosy, “made-in heaven” picture, they truly symbolise that marriages are all about teamwork.
While it was initially difficult for me to cope with what I saw my father going through, most of these lessons I learned were inspired by my mom, who is my father’s primary caretaker.
Articles on the internet on what one should do while living with a chronically ill patient were very prescriptive. They said ‘stay happy’, ‘stay positive’ but never explained ‘how’. Finally, I figured out the method that worked out best for me and here I am sharing a few of those practices with all of you:
1. Understand and accept the exact medical condition of the patient:
Take counselling from the doctor to understand the condition of the patient — what is the scope of improvement, what all signs should they be alert for, and the importance of each medicine. Random internet searches will not help much in these cases. It is equally important to monitor periodically if all that we are doing is enough — is there anything new required that we are missing out on? We are fortunate that we have healthcare professionals in our family that have made this monitoring easy.
2. Delegate work in the family and avoid micromanaging:
If there is scope, try to delegate work. One person, like my mom, doing everything can be draining for her, and at the same time, it can be boring and irritating for my father. So, we have delegated responsibilities like one of us takes care of feeding him, another takes him for physiotherapy or walks, and so on. It is also important to accept that some days are good and some days are bad depending on how the patient responds to medicines and overall treatment. We should realise that for medicines to work effectively, willpower is needed. Try to build the willpower of the patient with each dose of medicine. Avoid being so hard on yourself. Let bad days be just that and hope for a better tomorrow.
3. Take every day as the first day and the last day:
When caring for a chronically ill patient one does not know what will happen the next moment. Surviving each day is a battle won. Now, it has become part of my conduct for life in general that I deal with people as if this it’s the last time I may be talking/meeting them. I spend as much time as I can with my father. I give him a little bit of sweets that he is fond of every day, even though he is diabetic. This little amount of sugar keeps him happy.
4. Don’t overthink what caused this condition:
There is no point in overthinking about the cause that no one knows, even if you get to know what caused the disease, it is not going to change the situation. So, better to have the spirit of acceptance than trying to figure out how you got here.
5. Treat them like a child:
When it comes to advanced Parkinson’s disease, the patients subconsciously feel helpless but are not able to express themselves. At times, they resort to childish mood swings. It is important to identify what triggers their mood — it can be repeating certain dishes every other day, a person they dislike, or physical discomfort. Try to pamper them especially on such days.
6. Initiate conversations – childhood and first home conversations are always a kickstart:
My father hardly speaks these days but I have figured out if I randomly start a conversation about Kashmir, their childhood times, any old memory, he responds. That is how every evening I keep the conversation going which is a kind of mood lifter for him.
7. Zero in on interests; Group activity can be explored:
I experimented with various options like playing music on the radio, OTT films but finally identified that an old movie that too on a Tablet (not on the big TV) is what interests him. Initially, he was interested in playing cards but the continuous shivering of hands made it impossible to play. So, we let him watch his favourite movies while being in the comfort of his own space. A group activity in his presence can also do wonders in some cases. Even though the patient may not be participative initially, it is good to do something as a group. In my home, we generally do evening aarti/ some bhajan as a group activity in his room. He listens and participates passively at times humming and singing a few words.
8. Notice and get inspired from things around:
Staying positive is indeed a choice — situations are always overpowering, so try to take inspiration from your environment. In my case, it is my mom. No matter what happens, she never loses her smile, you call her at any point of the day, she will always be positive — wishing you happiness. Whenever I feel low, I just imagine my mom and think if she can do it, why not me?
9. Writing can be blissful:
Writing for me is therapeutic. There are days when I am overwhelmed and feel helpless for not being able to do anything to improve the condition of my father. It is on such days; I resort to writing this helplessness on a piece of paper and doing what I can to make things better. This exercise does wonders for me. I feel light in my heart.
10. Find humor in little things:
We can’t control the situation but we can change our reaction to it. Initially, when we used to notice any further deterioration in papa’s habit/ health, we would be lost and shattered. This had a negative impact on his health. Slowly, we are trying to find some humor in those things, too. This keeps the atmosphere at home light-hearted.
11. Work on your mental health and find time for yourself:
I take one hour off each day when I am not doing anything related to my father. I walk, exercise, or do whatever I want. This is how I recharge. Though I started this last year, it has indeed been very effective in ensuring my mental health.
12. Don’t justify to others:
The health condition of somebody like this in the family can cause a gap in your work/career — late submissions or not being able to attend a family function. All this may pose a number of questions but once you stop explaining yourself at every single point, you feel empowered. Stop caring too much about the silly judgments of people.
13. Find strength in your core group:
Your core group can be your one or two close friends or anyone. Just find strength in that group. Don’t isolate yourself. Try to be in touch with people who make you feel strong and who can also let you be vulnerable and weak when you are feeling like.
14. Be innovative in your approach:
The one important thing that I have learnt in the last few years is that every day I see a new version of myself, which is stronger and more innovative. I have developed new ways of making the same food look interesting for him, and new ways in which he will be more participative for exercise. With my limited experience in cooking, I have prepared sweet dish delicacies for him. Start feeling proud of these small achievements and you shall sail through tough times.
15. Don’t exert yourself:
Though we have never been able to understand what could have gone wrong with a man who had such a healthy routine, one of the causes that I feel is that one should not over-exert too much at the beginning or prime stage of life. It burns you out completely. When I was a child, I saw my father helping people tirelessly, spending the day and night typing letters and doing everything possible to just help people at the cost of his health and personal time. It was very energy draining though he never realised it at that time.
These are just a few things that I practice in my life to help me not get bogged down by the helplessness of the situation but be strong enough to spend the best of time possible with papa ji and create memories that we can cherish forever.
(Written by Deepali; Edited by Yoshita Rao)