Guilty: Burdens of a Caregiver

We are often far harsher on ourselves than we would be with others.

While we may not be the ones afflicted with cancer, we are most certainly affected by it. When I say “we”, I am referring to the caregivers. While so many people in this world know somebody who has cancer, it is not usually a part of everyday life. As a caregiver, it often becomes your whole life.

I have had some extraordinary advantages compared to most when it comes to my ability to be with my sister. The fact that our parents own and operate their own companies has allowed me to spend an unlimited amount of time bedside her and make her the focus of all of my attention. I have not had to miss any appointments, treatments or procedures. From diagnosis to today, I have spent nearly every night next to her while she has been hospitalized.

In some ways, I do consider it a blessing, but it has come at a cost. As her needs and wants have changed, it has become seemingly impossible too steal moments away for myself. In the beginning, I didn’t have the hindsight to know that I may have been providing a crutch for her. Although she is an adult and could vocalize her wishes, she never had too, because I was there all the time and could do so for her.

At times, I have been perplexed at her ability to be so cheerful and upbeat in the presence of friends and doctors, because when alone she expressed sadness, fear, isolation and worries that are far beyond her own control. Sometimes, I think that she doesn't realize that they are also not in my control. I have been reminded by many that it is because she can let her guard down and with others she needs a barrier. I have never been angry, because I do not need a “thank you” for what I do. I chose this, and although it is seldom easy, I know that it is always what is right.

During her year-and-a-half long battle with cancer, it’s not as if life stopped happening. Our family faced many trials and tribulations. My mom had an abscess requiring a week-long hospital stay, then suffered heart attack this past December. My older sister continues to deal with the effects of psoriatic arthritis, and my older brother deals with a bad back and bum knee. My twin recently learned of a thyroid issue. The stress that this has put on my father has hindered his ability to completely recover from his second stroke. Meanwhile I have endured two miscarriages and the untimely passing of my fiancé.

Those close to us have often mused that we are accident-prone. In our own family, we often say that if we didn’t have bad luck, then we would have no luck at all. I however, disagree with both sentiments. It is not the we go looking for trouble, it just happens. And while these last few years have been rough, I’d like to think that at the age of 25, the best is yet to come and it is going to get better.

With cancer, nobody knows what to say or how to react. I’ve always tried to remind my sister that she just has a disease and it doesn’t define her. Having cancer does not simply erase who she is. She is still a friend, sister and daughter. It strikes me that she is not alone. I think far too often, people who suffer from chronic disease are only seen as the illness that they have. We need to remind them that they are individuals, not an illness.

As her prognosis changed, it was hard to not be angry with people. They were all very well intentioned, but they offered her words of encouragement that I felt were often false hope. They used to say that she could beat this, or that she should ignore what doctors say because people defy odds all of the time. It seemed so unfair that they could say these things. How could they promise her things when none of us were in control?

My sister’s illness never fit into a box. It has tested my mental and physical strength as a caregiver in every way. Had I been told everything that I would have had to do and everything that I would learn I’d be able to do it all half a sleep, I would have laughed and proceeded to run the other way. I think that most people would respond that way. But when faced with it as a reality, we don’t. For some reason, we are able to deal with the problems in front of us and we do it fairly well.

Of the skills that one learns as a caregiver , medications is one that you master. Yes, in the beginning it is daunting. There are so many, and they all have names that sound the same, like something Mary Poppins might have made up. Fear not, you learn them by heart. While my sister could dose and handle her medications in the very beginning, that ended quickly. I drew daily charts for medications, created a cycle that worked for us and got a twice-daily pill box.

Aside from being a pharmacist, being a great listener serves you well too. Doctors have a knack for saying things in big long words that could be said in a much more simplistic manner. The good news is that you come to know those words. In the beginning, they sound like gibberish. Later, they roll of your tongue. Being the eyes and ears is super important. I was so overwhelmed that I would miss things too, so I took notes. Building a good report with medical staff, I learned quickly that you can and should ask questions. They may not like it, but doctors are, in so many ways, working for you.

To say that it is hard is a vapid understatement. It is scary to be charged with caring for another human being. Simply making the choice to do so, means that you are stronger than you give yourself credit for. I think that the key to caregiving is first and foremost acknowledging that we are humans. You will make mistakes, but that’s OK. Just remember, it is not your fault. We are all students, learning as we walk through this life. You did not inflict your loved one with their illness. You are doing your best. As simple as that statement sounds, it is all that you can do. And it is more than enough.