Note to a Caregiver of a chronic disease
“My Journey as a caregiver to an IPF warrior”
Death is unfathomable, especially when it strikes home. Time seems to stand still when your loved one is diagnosed with a life-threatening illness/chronic disease. You either push away the news being hopeful and seek refuge in being an optimist or while researching about the illness cry in despair and some put up a brave face and power through. You along with your other caregivers get a gazillion opinions from all the renowned doctors around the world and pursue the most appropriate and promising treatment. At times you enjoy a brief amount of respite from the encroaching illness and when the treatments start failing, you either physically or mentally break down or you muster courage, smile and continue to be strong for your dying loved one. My family and I choose the latter. Nearly 60% of the deaths are due to chronic diseases like heart disease, stroke, cancer, chronic respiratory diseases, diabetes, visual impairment and blindness, hearing impairment and deafness, oral diseases and genetic disorders are other chronic conditions that account for a substantial portion of the global burden of disease. My father was among the unfortunate 60% of the population.
On December 27th 2019, we rushed my father to the emergency room of a multi-speciality hospital. He had recently been back from attending his nephew's wedding and complained of shortness of breath. On checking his oxygen level in the oximeter it stated 80 which warranted for urgent medical assistance as the body was in dire need of oxygen supplementation. Normally in healthy individuals, the oxygen saturation level is between 96% to 98%. My father was a very fit, healthy, active or rather proactive man who never had any other complications/ailment except for persistent complaint of a dry, hacking cough that refused to go away and constant irritation of acid reflux. While the doctor was with the staff and giving them instructions, my mother and I were anxiously waiting to know the diagnosis. Our world came crashing down when he broke the news of my father having an irreversible, incurable disease named Idiopathic Pulmonary Fibrosis (IPF) and Chronic Obstructive Pulmonary Disease (COPD). While charting down the treatment he also let us know on how the illness is terminal and gradually the end may draw closer in 2020. Very little is researched about the disease hence he could not be definitive about how the disease would behave as for the most part the symptoms don’t get better, but treatment can slow the progression of the damage caused to the lungs. Every patient's journey is unique and the worsening stage differs depending on the immune system of the individual. Once diagnosed it is believed that the person might have 3-5 years to live. If caught early, life expectancy can be prolonged. However, for my father, we had caught the disease at its tail end.
What is IPF and COPD?
Often, people in the medical fraternity would use the term Interstitial lung disease (ILD). ILD is not a lung disease itself but a group of several lung conditions, including IPF. An important thing to note is the diseases clubbed under ILD are notorious for progressively scarring of the interstitium further causing progressive lung stiffness. Prognosis being affecting the patients breathing and decrease in the level of oxygen delivered to the lungs and eventually bloodstream. IPF causes scar tissue to grow inside your lungs and makes it hard to breathe. It gets worse over time. When you breathe in, oxygen moves through tiny air sacs in your lungs and into your bloodstream. From there, it travels to your organs. IPF scar tissue is thick resulting in less oxygen flow from lungs to blood, which can keep your body from working as it should.
COPD a.k.a. chronic obstructive pulmonary disease, commonly referred to as COPD, is a group of progressive lung diseases. The most common are emphysema and chronic bronchitis. Many people with COPD have both of these conditions. Emphysema slowly destroys air sacs in your lungs, which interferes with outward airflow. Bronchitis causes inflammation and narrowing of the bronchial tubes, which allows mucus to build up.
Our Journey with IPF – Tips for all caregivers of chronic disease.
1. Decide as a family
There would never be a dull moment with my father. He was the most humorous, kind, gentle and loving person who was admired for being strong-willed. He has met with many gruesome accidents but always emerged victorious knocking down whatever disease came his way. Nevertheless, his sheer will power was going to be tested this time. This disease was already going to steal my father away from us we weren’t going to let it rob “hope” from my father and diminish his spirit. Hence, decided to refrain from telling him that the disease was irreversible. In retrospection, I often question and wonder whether it was morally right on our part to withhold that information. Nevertheless, we as a family had made that decision and stuck by it.
2. Educate the patient
Patients tend to be anxious/nervous about sudden changes they witness put them at ease by letting them know what’s happening with their body. My father was critical and from the emergency room was shifted to ICU. We had hidden the gravity of the situation but never lied any information about his health from him.
For instance, he would ask and be curious about why was he not able to sleep. To which the explanation was he was in an upright position, any respiratory discomfort would lead to erratic sleep patterns and last but not the least body was still getting accustomed to the oxygen tank and mask. There is a thin line between hiding and lying. We hid the nature of the disease but never lied about what was happening to him.
3. Face your fears
The only constant pattern in all chronic disease is “deterioration”. All the people who are diagnosed with IPF are awarded the term “IPF warriors” and rightly so as breathing should never be hard work but for IPF patients it’s a constant struggle and seeing someone gasp for air rips your heart making you feel helpless and hopeless. My father’s body requirement of oxygen had come down to 10 litres per minute from 30 litres. Although, in a critical stage the doctor asked us to take father home so that he can be in the comfort of his house. For every caregiver, this instils fear as the risk of infection, not having a doctor at an arms distance or medical assistance is scary. However, I recommend facing your inner demon which engulfs you in confusion and worry. The day we got my father home he was ecstatic and had happy tears in his eyes. In my entire lifetime, I have seen him cry only twice. Once during my wedding and now. The beauty in this satirical situation was that in my father’s head discharge meant he was getting better and he was on the path to recovery.
4. Celebrate wins
It is a little difficult for caregivers to mask their facial expressions when they are under constant physical, emotional and mental stress. One has to be alert and on their toes, all the time and at times guilty as one starts thinking if the deterioration is because of their negligence or did they do something wrong. Is the patient is facing the ramification of your decision breeding conflict and guilt within you. Don’t fall prey to this constant whirlpool of questions as you are doing everything to the best of your capabilities and that is what matters. My father’s graph was never constant. One moment he would feel better the other he won’t. The days he did feel better we celebrated and could not stop celebrating and talking about the small wins. The days he did not feel better we celebrated the past wins. If we did not have wins for many days we would make fun of how my father would monitor his O2 level and heart rate levels.
5. Research a lot
The relationship between medicine and money is a delicate one and all involved need to handle it responsibly and delicately. Health care professionals are neutralized seeing people in pain and misery lacking empathy. In Indian society where doctors are treated like GOD who promise the best medical service are tied to large corporate hospital chains. We were blessed with a genuine doctor who kept patients need paramount but some of the common tactics used by money-minded Indian doctors/ health care providers it to cheat or fleece gullible patients of their hard-earned money.
My sister and I left no stones unturned. We read all the material available through print and digital media, got in touch with various IPF centres, updated ourselves with various clinical trials. Spoke with experts to explore options like lung transplant and know more about the disease and effects/ill effects of the medication. Also, called other caregivers who lost their loved ones to IPF and learnt from their stories. Researching helped us to face anticipatory anxiety as when we saw my father’s appetite decrease, he losing weight, swallowing becoming difficult. We were able to draw correlations and take actions accordingly.
6. Respect the patient’s wishes
At times the caregivers tend to take a call for the patient probably thinking that their decision is in the best interest of their loved one. It is understandable to do so when the patient is unconscious or not in a state where he/she can talk, write. However, taking decisions for a person’s life without informing or against his/her will is questionable. My father took pride in being healthy and hated hospitals, medicines, life support systems like ventilators. When we readmitted him there came a situation where we had to shift him to the ICU as his oxygen needs started increasing. My father was not comfortable on High-flow nasal cannula (HFNC) which supplies 100% humidified and heated oxygen at a flow rate of up to 60 litres per minute and had to be shifted to Bilevel Positive Airway Pressure (BiPAP) Non-invasive ventilation is the use of breathing support administered through a face mask where air usually with added oxygen, is given through the mask under positive pressure. He was not stable on that too. The doctor gave us a timeline of 6 hours and told us to explore the option of intubation/ventilator to aid and facilitate his death. In nut shell, it meant sedating him to a level where he turns unconscious and then pulling the plug on him after we took him home.
We did not feel right deciding for his life. The only sensible thing was to ask my father. He refused bluntly and wanted to die with dignity. He said
“I lived like a king, I will die as a king. I will fight it by myself till my last breath but don’t want to be on a ventilator. The doctor has made you weak by saying I won’t be able to live long maybe. However, you are weak I am strong will fight it out and see you tomorrow and I will prove I am brave by fighting with your mom as well’.
The fact that he was able to joke even at that time speaks volumes about his character. We respected his decision and in emotional distress waited outside the ICU praying for him. To our surprise, he fought the night as he was waiting to greet his elder daughter who was flying from abroad. The doctor considered him a medical marvel as he made it through the night. However, the merciless monstrous disease took my father away from us on Feb 8th,2020.
Choose to relive the positives
Patients become a mere ghost of their former self battling chronic illness. These memories at times trigger without any notice playing like a cassette disrupting your sanity. Forcefully, erase those memories and choose to see the positives. Father was 70 when he passed away - a wonderful husband, father and grandfather, still missed on a daily basis by us all. A superhero and a self-made man who made his mark by not having any godfathers in life. A person who was far ahead of his age who lead by example. We choose to see the positives and learn from how he faced death.
a. Be strong-willed – He was living his nightmare. His only fear in life was to be dependent on someone. However, he joked constantly until his last day. He, in general, taught us to live life happily and believed in embracing difficulties with a huge smile as everyone has an expiry date.
b. Be calm – He was not getting better but still was never moody, irritable or angry. He was calm and composed like a Buddha embracing what life had in store for him.
c. Be proactive – He was bedridden but was very active in calling the plumber, carpenter, electrician, paid ebills etc and made sure he was getting the work done with limited mobility.
d. Always be thankful – He did not miss a day to thank us for taking care of him. We as a family believe in saying a lot of “Thank You’s” and “Sorry” as he did not want anyone to feel taken for granted. He displayed gratitude towards everyone who stuck beside him.
e. Be active – He could sense his mental alertness go down a bit and to keep himself active. He played word games and a quiz. With oxygen levels dropping down it is a wonder to have my father mentally alert and conscious till the very end.
f. Be giving – He had realized a day before his death that he would not be able to make it. He has helped people his entire life and wanted to help people even after he died. He wanted to donate his organs and wanted his clothes to be worn by his nephews. His heart knew only to give and I am proud to have him as my father.
Major take away GIVE A THUMBS UP - He fought the disease bravely without complaining once. On being asked how he felt? He would give a thumbs up as his speaking ability had diminished. Even when his reserve muscles were working and his entire body would jerk to help him breathe making it visually evident that he was in physical pain. He still gave us a “thumbs up”. That is the time when I realized he never verbalized but he loved us more than himself.
Minor take away – Life gave me and others a chance bid goodbye to my father and gave us time to make him aware about how much we loved him, cared for him and appreciated everything that he has done for us.
The demands of caregiving are exhausting and overwhelming. It can take a blow on your personal and professional life. I lost my job and I am forever grateful to my husband Rohit Prakash for being so understanding and standing like a rock amidst such a difficult time. My sister Pooja Murthy has been a backbone who has kept us glued together. The way my mother Neena Murthy conducted herself is an inspiration itself. She fought cancer a year back and keeping her needs behind stood like a rock being this beacon of strength and positivity till the very end. Like a lioness protected her cubs my sister and me so we don’t get weak. After my father passed away she encouraged us to break all the social barriers and be involved in all the funeral processions and rights as they raised us as sons. We are lucky to have a father who was a warrior and mother who is a soldier who never made us feel powerless.
Feeling powerless is the number one contributor to burnout and depression. And it’s an easy trap to fall into as a caregiver. Several studies show that there is a significant correlation with caregiver burden, anxiety, and depression including the care recipient’s functional status, personality changes, mental functioning and the presence of comorbidity. It can take a toll on physical and mental need ergo concentrate on your health, find a companion to communicate your feelings, join a support group as before you fight the battle with your loved one be sure to put your own oxygen mask.