As an IBD patient, all my life I only knew to seek care from the outside world. I was always getting fostered and protected by my family and loved ones, allowing me take the shelter of being a patient. I never once had a thought that one day I would also be placed in that situation of taking the role as a caretaker. The universe always has a different plan for me. It tells me to expect the unexpected when everything seems settled and going smoothly in order to make my life more adventurous.
Year 2021 started on a positive note, then the severe flare I suffered through last year slowly showed some mercy upon me and started to settle down. I was at the verge of reaching back to the stage of normalcy. But things didn’t go as I had hoped. There was a lot of upheaval and overwhelming situations waiting for me, even before I could breathe a sigh of relief. One such instance was being infected by the corona virus and living the quarantine life (an experience I have penned down in my other article). Another one which I am sharing with you all now: The situation in which I had to assume the role of a caregiver and take upon the responsibility of my family.
My father, who is now 66 years of age, was a very healthy and a disciplined person all through his life. Suddenly, one night he returned back home limping and thudded on the sofa. This was something very unusual for me and my mom, who just stood watching him numb. He was yelling with pain and anxiety. I stood clueless because I had never come across such a situation. Every time it used to be me who used to shout, scream and yell with pain and frustration making my parents anxious and stressed out. My mom had recently taken her first dose of vaccination; she was feeling very weak and was unable to come to my dad’s rescue. I was so confused as to what to do, whom to contact, and what action to take. I didn’t even know what first aid to apply to make him comfortable and relieve him from the pain. Finally, I just gave him some painkillers which helped him sleep. One night passed, and in the morning, he woke fresh and was back to normal. But it didn’t last long. After a month, the same thing repeated. I was so confused that I never attempted to assess the root cause. Later, the pain started to show up more frequently which completely restricted his movement.
This was when I was forced to take up end to end responsibilities of the house, for which I was completely not prepared. Not being able to understand which doctor or specialist to consult, I felt overwhelmed, burdened, and even trapped as the current pandemic and imposition of lock down made the situation even worse. I felt unprepared and unable to manage the responsibilities and feelings that came with it all. I felt pressured by other family members to provide care, despite having little or no strength nor bandwidth to do so. I could only oversee my near future dealing with a crisis of financial worries, difficult decisions, uncertain future and unexpected and unwanted lifestyle changes. Fear, hopelessness, guilt, confusion, doubt, anger and helplessness all took a toll on my physical and mental health.
As I am someone who wishes to see the good in every experience, I consider this a learning experience. It made me stronger and prepared me to face the worst. Here is what I learned from the past few months, which I do not wish any other fellow IBD mates to struggle with. They say, every person has a unique story, and every story has the power to touch the lives of the readers, their family members, loved ones, friends, coworkers, and the greater community. That’s why I felt it was important to share my story and let the readers understand the do’s and don’ts under these circumstances:
3. Know what you can’t do and never try to do it all alone.
First, we must know what we cannot do and most importantly, we must never try to do it all alone. It’s always better to reach out to others whom we think can do it for us. In my case, with too much pride, I wanted to manage it all alone. I felt that as a daughter, it was my responsibility to take care of the family without burdening anyone else. This was really painful and stressful. We need to set realistic limits on what we can do. For instance, if you are in a flare and if the other person is too heavy for you to lift, you may be able to help them roll over in bed, but should never try to lift them all alone or catch them when they fall. We may end up pressurizing our intestine and create more severe or worse damage for ourselves. There are ways we can safely help a person sit up or walk but we have to learn to do it without hurting ourselves.
2. Learn to ask for help.
Allowing others to help can take some of the pressure off and give us time to take care of ourselves. Often family and friends want to help but may not know how or what we need. We need to talk to our loved ones, so there is a clear understanding on what we are able to do and what external support we are seeking. My stubbornness had never allowed me to let my own siblings know what was happening at home. Everytime they called up i used to say everything was fine. But if I had expressed my concerns, things would have been much easier for me to handle.
Talking to others who are going through the same experiences canreassure us that we are not alone. Human connections can help us stay strong, let people know what we need, and what motivation they can offer. We cannot and should not try to be responsible for all.
3. Practice Patience and Exercise Compassion
During these times, the relationship with other family members can be tenuous and difficult. At times I wondered “why me?” as caretaking was a stressful set up, involving great sickness, making it is easy for tempers to flare and patience to run thin. So, patience is the most important virtue one should develop. As IBD patients, we can understand this well- we understand that the person who is suffering in pain is not always in complete control of their actions and, with that in mind, we can give the situation extra time to calm down and respond with ease if there are some heated moments.
It is obvious that these situations can easily create frustration within all the members at home. Frustration, however, leads to a strained and fractured relationship, which is not right for the home setting. My dad used to hesitate to express his sufferings completely. Instead of allowing frustration to take hold, we should seek to exercise compassion. Compassion for yourself and others allows people to soften their hearts toward another person and get to a place of honest communication.
Such incidents can also lead to work-related issues like missed days, low productivity, and work interruptions. The stress of managing responsibilities on top of worrying about keeping our job can be overwhelming. Dealing with these issues is important and the best way is to keep at least our reporting manager informed of what is happening and how we are dealing with it.
It’s ok to feel angry, helpless, frustrated, hopeless and show resentment. It is normal - these are our feelings and we should learn to accept them. There is nothing wrong with feeling that way. No matter what we do, we will very likely come to a point where we feel that we have failed in some or the other way. But we have done the best we can. At times we may even feel that we could have handled the situation better or done something a better way. At these times, it’s important not to blame ourselves. We should find a way to forgive ourselves and move on.
Mental health matters a lot. We need to Meditate, take breaks, choose a quiet area, close our eyes for 5 minutes, listen to our inner self, breathe while we visualize being in a serene place with birds and waterfalls. Listen to soothing music and get as much rest as we can. By using positive affirmations we can also help to ease out stress.
After all, it is utmost important to take our medicines on time, manage our doctor appointments, get done our regular checkups and follow ups as per the schedule, eat and sleep well without being drowned with exhaustion by managing these responsibilities.
As a concluding statement, I would wish to bring light on the importance of treating our caregivers with love and dignity. We often tend to take for granted our parents who are our primary caregivers throughout our IBD journey. If you are the one being cared for, encourage your caregiver to share with you and with others the difficulties he or she is facing. It will take only one friendly gesture to make a significant difference in that caregiver’s life. Encourage them to find that friend in whom he or she can confide..Help them find one friend whom he or she can ask for help and support as “Troubles shared are troubles halved”.