I became a caregiver in November of 2013. I didn’t ask for it but no one ever does. I never thought I would have this duty this early in my life, but life is unpredictable. I watched my parents and aunts deal with my grandparents when they were sick, but I figured I wouldn’t be in that position for decades. I was wrong.
One of the positive things that has come out of this experience is meeting some wonderful people. Some are patients and some are caregivers. I know in a way I am luckier than most caregivers, because my patient is doing very well and I pray that she will forever. Does this mean I have an easy job? The answer is no.
I may not have to take care of a physically sick person, but I do need to create a happy environment for my wife and small children. This means having a positive attitude when you maybe hurting inside and having to help small children understand situations most adults have a hard time dealing with. I also get the pleasure of dealing with insensitive people who ask, Did your wife smoke?
Another aspect that I have been lucky with is that Molly is naturally a positive happy person. One of the smartest things she has done is to stay away from the internet. This has hugely helped her with happiness and living a normal life. As I have mentioned before, internet has some scary outdated data and support sites can cause as much harm emotionaly as they benefit.
In our household I have taken over the cancer research duties, since all patients need to be informed of their treatment options. I sift through sites and provide Molly with the synopsis of what treatments are available or becoming available to her. This can be a hard job, since I do not have a science background and some of the terminology goes right over my head.
People always ask me where my favorite research sites are, and my answer is Cancer Commons, #LCSM. This is where you get scientific research minus the personal opinions. The problem with sites where people offer personal opinions is that cancer is very unique to the individual patient and a treatment that works for one person, may not work for another patient. I have found that patients will ask questions on support sites which should be only answered by a medical professional.
Last I wanted to give an advice to people when talking to caregivers. We may not be the patient, but we are in a very stressful situation. I find that some friends and family look to me to make them feel better about Molly’s diagnosis. Be sensitive to the pain a caregivers is going through, their job is not to make you feel better.
Caregiver burn out is very common, there is one jerk who left his wife and two small sons eight months after her diagnosis. Caregivers need as much emotional support as the patients do, but often ignored because they are not the patient. When they are telling you about their pains, they are not necessarily asking for your advice, they just need someone to listen to them and be their friend. Also don’t give them the old cliches like “Stay Strong” or “Stay Positive”. That’s just annoying.