Caring for Caregivers
Mar 20th, 2009 | By Rose Barbour | Category: Health
In the past couple of years, two women in my life have proven themselves to be extraordinary in their strength and compassion. My sister-in-law, Joni, is one of them. The other is my friend, Melissa. Both are young women in their twenties who have been devastated by cancer. For Joni, her nightmare began in January 2008, when she learned that her fiancé and now husband, Frank (my wonderful 35-year-old brother), only had months to live. He battled brain tumours for three years and was no longer responding to treatments; there were no other options available. Joni was eight months pregnant at the time with her first child, and Frank had a 10-year-old daughter who needed and loved him he had so much to live for. Thirteen months later, he still walks this earth and we are grateful. My sister-in-law is a wonderful wife and caregiver, and I am thankful for her being in my brother’s life.
Melissa’s beautiful son, William, was diagnosed with cancer of the liver and lungs shortly after his first birthday. William, with his mom’s tremendous love and support, fought a hard battle for a year before he succumbed to the disease. His little body couldn’t fight it any longer as the disease continued to live inside of him and spread. Melissa buried her little soldier, as she affectionately called him, in September 2008.
There is no way to describe the kind of pain and grief that comes with having a loved one diagnosed with cancer. As primary caregivers, Joni and Melissa have had to deal with personal grief, while keeping on a happy face for their loved one. They had to quickly become health advocates and make decisions about cancer treatments. In addition, they have also worried about their living arrangements during extended hospital stays, household finances, and so on. It is an overwhelming situation that requires a strong support system to help get through it.
It can be very difficult for family and friends to know what to do to help the primary caregiver. Friends and family often feel that they don’t want to be a bother to the sick person or their caregiver, but at the same time, they feel helpless and want to do something. I talked to Melissa to see if she could give any advice to friends and families who want to be supportive of people like her and Joni but don’t know what they should do. Melissa spent the better part of a year in the hospital with William. When she had a chance to check her emails, it lifted her spirits to get a message from someone who was thinking of her and William. Unfortunately, far too often, there were no messages except when there was a crisis happening. I was one of the people not sending messages even though I thought of her and William every single day. I assumed she was being bombarded with messages and wanted to give her a break from answering them so I chose to send messages every once in a while. I made an assumption, and I was wrong. I learned a lot from Melissa’s poignant and sincere answers. I hope you will too.
Rose: Tell me about your pregnancy with William.
Melissa: I had the best pregnancy imaginable. I remember when I found out that I was pregnant with William: I couldn’t even believe it. I used to sing to him while he was in my belly. I suck at singing, but I know that he loved every moment of it. I never imagined that the bond between a mother and child would start so strongly, even when they are still in the womb. I had the best pregnancy ever: no sickness at all. I got really big, really fast. William weighed 8lbs 4oz, born July 2, 2006, at 6:14 am. It was the best moment of my whole entire life. I would never have thought when he was born that I would be staring at my best friend, my soul mate, my son, and my soul. He was my everything.
Rose: What kind of support did you receive from your friends and family during William’s battle with cancer?
Melissa: I wish I could tell you that there was tremendous support, but I would be lying. People come in the beginning when it is still fresh, but slowly disappear as the novelty begins to wear off. My mom was my mentor, my inspiration. I don’t know what I would have done without her. Unfortunately, even family members will not come around eventually. It is important to know people are still there caring about your situation. I was thankful just to get a message on Facebook asking me how my day was or how William was. After William overcame the first ICU visit, nobody came around. When we found out that William’s cancer returned and he was going to die, everyone came back. You really learn who your true friends and family are. I do have to say that I met some of the most amazing people through this process, though, and they are the best friends I have ever had in my whole life.
Rose: What is the most important thing that someone could have done to help you when you were taking care of William?
Melissa: The most important thing that people could have done for me is help me with the small things. One of my friends recently said that it is like everyone came when there was a commotion or when he was really sick and then disappeared. I had nobody for months besides my mom. I feel like I had to force people to come up and see us at the hospital. It got boring for both of us because most of the time William couldn’t leave the room so I couldn’t eat or shower or go to the washroom. So I guess the most important thing would be to give me a 5 minute break. When you are going through a situation like this, you don’t like asking for help, so having people offer to do something, even if it is to do your laundry, get you food, etc. is so helpful and appreciated. The small things definitely count. It was very draining to watch my child go through hell on earth, fighting something that nobody in this world should have to fight, with a smile on his face. You have so much time on your hands so you begin to ask yourself all the what ifs, and why questions. A five minute break to go to the washroom, get some food, and get some fresh air helps you stay somewhat sane.
Rose: What are some things that well-meaning people did but that turned out to be not-so-helpful?
Melissa: Honestly, I don’t really know how to answer this one. I always try and put myself in somebody else’s shoes so if somebody did something that I didn’t find helpful, I would just say to myself they don’t understand what this is like or something along that line. I believe in God, I have to for sure now because I have to believe that William is somewhere waiting for me. I would have to say that comments like “He is in a better place now,” “He is not suffering,” “God had a plan for him,” [or] “God only gives you what you can handle,” didn’t help me! All I want is my baby back so that I can hold him and physically be with him.
Rose: How did you deal with your own personal stress? How did your friends/family support you in that?
Melissa: Since William passed away, I have nothing. I don’t have school, a job, another child, a husband, a boyfriend…nothing. Soon I won’t even have a car if I can’t get a job to earn money for my payments. I need a purpose to get up in the morning, and go to bed at night. Night time is the worst time for me. I go out a lot to night clubs. I don’t drink everyday but I started drinking at the hospital when I was told William was going to die. I guess I am kind of using alcohol as a crutch. I am trying so hard to find a job or some other purpose. I am a very bitter person and my wounds are still fresh; itis hard for me to answer this question because I truthfully feel most people in my family are doing nothing to help me cope. I didn’t get any phone calls from people in my family on the one month anniversary of his death. Nobody even remotely talked about him at Christmas, like he was never a part of our family. My dad’s side of the family and my few friends actually try to keep me busy—they text and call me, visit me, and make me feel welcome.
Rose: What kind of support are you receiving now?
Melissa: I am seeing a counsellor. I truthfully believe it helps you cope by talking to somebody who wasn’t emotionally involved in your situation. When William was sick in the hospital, I had a social worker. She got sick so I had nobody since that time. I literally had to go out and say I wanted to be referred to this counsellor in order to get her.
Rose: Thank you Melissa for your thoughtful answers to my questions.You are going to help so many people to understand why it is important to stay connected during the whole battle….not just through the crisis situations.
Melissa: I am honoured to participate in such an article. I think it is absolutely important that people realize the strains involved with having a terminal illness or caring for a family/friend with one. Thanks for giving me this opportunity.
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