Today marks the American Cancer Society's (ACS) 100th birthday. For 100 years ACS has worked relentlessly to save lives and create a world with less cancer and more birthdays. Together with millions of supporters worldwide, ACS is helping people stay well, get well, find cures, and fight back against cancer. In celebration of 100 years ACS is honoring those who support those fighting cancer, the caregivers, with 100 stories about these unsung heroes.
Caregivers come in a variety of relationships and titles. They are not limited to spouses. Caregivers include the children, siblings, family and friends of those battling cancer. The people who help them in the fight with their support. These people cook meals, go to doctor's visits, looking up resources, help with chores, encourage laughter, share in tears, and provide support in more ways than can be imagined.
Unfortunately, I have played the role of caregiver for both of my parents. So I was 100% on board to help ACS celebrate 100 years by shining the light on caregivers. I decided to reach out to some of my bloggy friends, Alison from Embrace the Struggle and Erika from Your Chic is Showing who have both played the role of caregiver. I asked them to join me in answering 3 questions. Here are our responses.
1. What was the most difficult part of being a caregiver?
For me, the most difficult part of being a caregiver was the lack of control and feeling helpless. Knowing that there is nothing I can do outside of prayer to take the illness away from my loved one. Wishing that there was some kind of trade I could make or fee I could pay to rid them of the Cancer.
Alison said, "The most difficult part was seeing the physical deterioration in the person’s health and demeanor and being strong in the face of that obvious reality. Keeping yourself together and not breaking down in their presence is truly hard."
Erika replied, " The most difficult part of the journey was being in Washington, DC and focusing on school while she (Erika's mom) was in Ohio. Every part of me wanted to be there to help out and all she (and my Dad) wanted was for me to be in school. It was especially difficult when I did come home because the physical transformations seemed much more dramatic to me. For example, my mom gradually cut her hair shorter and shorter until she eventually cut it all off during her chemo treatments. For me, however, she went from having a full head of hair around Thanksgiving (my first visit home since her diagnoses) to being completely bald by spring break. I also struggled with how to be supportive from so far away. Since I couldn't be there to drive her to and from appointments, I always made it a point to check in with her often, especially on chemo appointment days. Lots of times she didn't have energy to talk, but I wanted her to know I was always thinking of her. And, when I was home, I pitched in however I could, i.e. helping shuttle my brother around, running errands, etc. As a 20/21 year old, I felt terribly guilty about not being home to a) help her out and b) be a support system for my younger brother who was in high school at the time. Even now, I still sometimes wrestle with the guilt of not being there in Ohio every single day."
2. What is the best advice can you offer other caregivers?
My advice is to pray a lot and find people who you can talk to about how you are feeling. This can be friends, other family members, even a therapist. You will be surprised that some people who you may have thought you could count on will not have the emotional strength to be there for you or they will just say the wrong thing. However, also expect to be surprised at who does step up and reach out to be part of your support system. As a blogger I have had the pleasure of receiving virtual support through social media. This type of support can be just as helpful as support you receive in person.
If you work I think it is important to let your supervisor know that you have responsibilities as a caregiver. This heads up is important as you don't know how your work duties may be impacted. While it may feel like the job is insignificant compared to your responsibilities at home but being open at work can provide the opportunity for necessary scheduling changes. This can overall decrease your stress level.
Lastly, make your loved on laugh. Laughter is amazing!!! It heals the body and the spirit.
Erika's response, " Whatever your capacity as a caregiver (whether you're there every day or you're further away) remain optimistic and helpful. And, while being respectful of their condition remember to treat them normally. Your loved one is reminded every day that they are fighting cancer (whether there is a physical reminder like no hair or black fingernails b/c of chemo or an emotional reminder); the last thing they need is for you to remind them of it. I remember that when I would visit my mom I would crawl in her bed with her and talk to her about all the silly 21-year-old drama that was going on (who didn't like who, why my boyfriend was driving me nuts, my professors I loved and hated, etc.). Yes, my mom's illness limited her energy, etc., but she was still my mom and I treated her as such. It is really easy to look at your cancer patient with sad eyes, etc. But, just like your loved one may need you to help shuttle them to the doctor's or chemo treatments, they also need you to help them live as normally and optimistically as possible."
Alison's advice, "Offer specific help. A generic “call me if you need anything” probably won’t encourage the sick person to call you. If you say “I’m here for you whenever you have to go for chemo” or “if you need prescriptions filled, I’ll go for you,” that’s far more useful.
Be consistent. It’s a time when the sick person needs to be able to count on you. Being there when the person is fairly okay but vanishing when things get worse is detrimental to the sick person.
Listen more than you speak. Even if the person isn’t keen to talk much, listen. And silence is okay! Just be there for them."
3. What kind of support did you need from others to help you better care for your loved one?
I needed my others to understand that being a caregiver is hard and you are not your normal self during that time. I needed them to be understanding when I forgot appointments and missed social outings. I needed them to understand that at times I needed to talk about things and at other times I did not want to talk about it at all. Most importantly I needed to know that they cared.
Alison needed, "Willingness to listen when I felt burdened by the situation and needed to unload on someone. Willingness to go with me to see the loved one."
Erika needed, "I really needed 3 things from my friends to help:
1. People who would let me cry without saying or doing anything other than letting me cry
It is not easy to have a loved one facing cancer. And, I felt like it was especially scary for me and my brother because we were young(ish). I had friends who lost parents as children and it's traumatizing. And, it's definitely upsetting to think that you could lose your parent - regardless of what doctors tell you. I didn't cry often in front of people, but when I did, I did it in front of people who would do nothing more than hold me and let me cry. I just needed to get it out. I didn't want anybody to offer trite cliches or spout off some rehearsed scripture. I just wanted them to be there and shut up
2. People who would pray with me and for my mother
That's pretty self explanatory. I didn't necessarily need to have a prayer group in my dorm room. I just needed friends who meant it when they said they would pray for my mom and my family.
3. People who will make sure you're still doing all the stuff you would normally do
In the same way that your loved one will want you to act normally, you're going to want people to act normally towards you. I distinctly remember my friends going out of their way (if that makes sense) to make sure I was doing normal, college kid stuff and not just holing up in my bedroom sulking when I wasn't in class or working my part-time job. They would take me out, drag me to information sessions, make sure I was interviewing for summer internships, etc. I know it was sometimes a chore for them to do it, but they really pulled me through. I was really blessed to have good friends and a boyfriend who knew that the best way to show support was to make sure I was doing what I was supposed to be doing."There is no Joy in watching our loved one fight Cancer. However, there is Joy that comes from know you are in their corner supporting them, encouraging them, loving them and doing everything in your power to make things as easy as possible. Shout out to all the care givers!!!
Are you or have you been a caregiver? How would you answer the 3 questions above? If you are currently fighting cancer what advice can you offer caregivers from the patients point of view?
May 22, 2013 is the American Cancer Society’s 100th birthday and they are determined to finish the fight against cancer. The 100 Caregiver Stories series is a blogger parallel to ACS’s 100 Days/100 Stories series, which features researchers and volunteers who are taking action to help ACS finish the fight against cancer. ACS wants to shine a light on 100 amazing caregivers by the end of 2013; sign up here if you want to share a blog post. No financial compensation was received to publish this post.