Updated: Sep 5, 2019
Caregivers can be the single biggest factor between a manageable treatment and an absolute nightmare. Caregivers are our protectors. They are our hope and strength when we feel we have none. They take on a lot of burden to help us focus on our health and strength. They help influence our decisions and know all our deepest secrets and insecurities. That’s a huge responsibility to take on and one we become reliant on once you step into that role. This is not a decision to be taken lightly.
If you want to be a caretaker or helper it is something to take some time with and decide what it is you really feel about it and how you feel you are capable of being involved. Don’t think you have to be there every single day and for every doctors appointment. There are so many roles you can take and so many different levels of participation. Maybe you are good at taking notes so you want to come with to the doctors’ appointments to remember what they recommended to do. If you love to cook you could offer to make a dish and bring it over. Maybe you have a really calm energy and you just want to go chill with them and watch movies. Come by and be silly with us and make us laugh. If you live close you can offer to pick up groceries and bring them over. If you enjoy the outdoors recommend bringing us with you to the park and set up a place where we can rest and walk around. If you really want to be a saint make the phone calls to insurance or call to set up appointments. Actually anything that involves a phone call would be so helpful. Maybe seeing someone you love sick and weak is too difficult for you. That is perfectly fine! Come over and mow the lawn or walk the dogs when we aren’t home. There are so many ways you can help and even the smallest gesture can make a huge difference. Something as simple as doing the dishes or laundry can relieve so much stress.
Don’t feel the necessity to offer any kind of help. For some people it just isn’t possible. But if you do offer help please come through with what you said you would do. Don’t stretch yourself too thin either. You have to be very aware of how all of this is affecting you and how much stress you have taken on. You have to take time for yourself, delegate responsibility, have a spa day, go out with friends, or whatever you might need to do. Don’t feel bad about it at all. If you aren’t feeling strong and in good spirits you can be more hurtful than helpful. We need you at your best. It’s like the oxygen masks on a plane. You have to put one on yourself before you can help us.
If you have made the decision to help, first you need to decide exactly what amount of participation you are capable of. Are you going to be a primary care taker or a helper? How much time do you have available and when are those free times? What are you capable of witnessing? Can you handle seeing us at our weakest? Take time at the beginning to get your support team together in one room if possible. Set up a pizza party. Have everyone discuss their abilities and what they could do to help and what their limitations are. Write down your schedule, availability, abilities to help and a realistic amount of time that you can offer. Send an email and write out information for each caretaker and helper with the correct information needed for each. This can include things like diagnosis, age, weight, doctor names, addresses, insurance info, medications, pharmacy, allergies, dietary restrictions, and everyone who is willing to help’s contact info.
If at this time you know of things that the patient feels comfortable or uncomfortable with addressing you can put this on there too. Maybe they don’t feel comfortable talking about their hair loss. Let people know not to bring that up. Update regularly as things change. As diet changes, as needs change, as doctors change, etc you can put what is changing in red and put what is new in green so everyone is aware. This way you can have anyone who is available be aware of your current situation so they can step into any role. It will also cut back on us as patients being asked the same painful questions over and over again or getting double or triple of one thing and nothing of another. Another helpful thing would be to decide who will be decision makers and get them power of attorney so they can make decisions over the phone or in person without having to have the patient there. This would save so much hassle and frustration in the long run.
It’s also good to have your own support group if you play a larger role. Have people you can vent to, people who can help you run errands, people who can take you out to have a good time. It can be very hard as a patient to deal with seeing everyone around you be so sad and hurt because of your illness. I don’t recommend hiding all emotion but being aware of your energy and if what you are feeling needs to be seen by us. The same goes for venting off stress. You don’t need to hide things from us but try not to blow up about how stupid the doctors are or how frustrating an experience was you had at the pharmacy. Some things we don’t need to know and will bring us unnecessary stress. Try to only inform us of negative things that we need to know about so we can make a decision on. I never wanted to know possible side effects because that would get my mind focused on those things and it felt more self-fulfilling. The day I learned I could get neuropathy was the first day I felt numbness in my fingertips. I didn’t see any reason to learn all the possible what ifs. If something was wrong I would know it and tell someone about it to see if it was normal or not. When we get a list of all the possible side effects our brain starts to make a connection to each of those and we will subconsciously start searching for these side effects. Worry and stress can make you physically sick and weaker.
For some of us it’s very hard to ask for help. It can also be difficult receiving help. I know I felt very self-conscious and always had a little checklist in my head of all the people I need to pay back afterwards. I understand now that is an unreasonable thing to be feeling. People step up and help because they want to help, not because they are paying it forward for a future favor. If you feel the person you are helping feels very uncomfortable, try and make us feel more comfortable about it. Remind us you are happy to do this and you just want to see us healthy and happy. This encouragement can bring such a big relief if this is something they struggle with.
What we need more than anything is to be heard and understood. Not coddled, not felt sorry for, not apologized to, not ignored, not given some fucking stupid advice that you have no real expertise in, let me say that again, stop giving us answers to all the problems you know nothing about. I wouldn’t tell a pregnant mother how to handle childbirth because I don’t have a uterus. Just listen and allow us to feel heard and supported. Sometimes we just need to be held. Sometimes we just need you to sit there and let us take an emotional dump on your chest without you comparing our problems or trying to explain how you understand because your neighbor had cancer or because you had surgery to remove your wisdom teeth you understand the fear of going into surgery. Understand that unless you have been through it there is no way you can understand and we don’t expect you to.
I struggled with this a lot while going through treatment. I wanted people to understand so badly what I was going through, especially because I was able to hide the physical symptoms. There was always a disconnect between the way I felt and the way people saw me. I would get so upset. I can’t believe this person isn’t here or I can’t believe that someone gave me that advice or I can’t believe people think I’m having an easy time at this just because I smile in pictures. But then it dawned on me that the only way you can understand what this feels like is to actually go through it. Me wishing someone would understand was the same as me wishing they had gone through this same process and I wouldn’t wish this on anyone. This helped me let go of a lot of the frustration and anger that I was feeling. I would begin to feel good when someone gives me advice I didn’t ask for or when they would say something that sounded so ignorant. I was happy to know that their ignorance meant that they hadn’t been through this pain before.
As treatment progresses we will go through changes. We will change our minds, emotions, snap, get frustrated, be mean, or say hurtful things but don’t take it personally. We hate doing it. You may be the only thing we feel we can control in our lives so we over control you. I know I felt everyone should be able to do things easier than I could so I would get very upset if I felt anyone made a mistake. Try not to respond to us logically because nothing about cancer is logical. Try to respond with a full understanding of what is happening inside of us both physically and mentally and know we are not in complete control. I would feel extreme loneliness, even in a room of friends and family. That is hard to understand. I felt disconnected. One of the best things that happened for my own healing and processing was being connected with other young survivors, especially with a similar diagnosis and age. Help us connect with peers in same situation. Watch out for toxic behavior, negative self-talk, bad friends, wanting to do too much, not doing enough.
Don’t force us into doing things. Don’t tell us, just redirect our focus. Make a menu. Remembering things can be very difficult and decision-making is hard so help us. Remind us of what we liked, give details, and give us a visual of how things would go. This can be for food or things to do. Explain what you would like to do. Don’t just say let’s go to the park. As patients we will think of all that could go wrong. I have to have the energy to get up, the weather is going to be too hot, what if I have an issue with my ostomy bag, etc? Say things like, hey we should go to the park. I’ll load up everything we need while you rest. I’ll put a blanket down for if you need to lie down, I’ll bring the speaker so we can listen to music, I’ll bring some snacks, you can walk by the pond and whenever you are ready to come back I’ll load it all up and you can nap in the car. Get us out of the house, do something nice, show us you care. The tiniest gestures make the biggest difference.
The more cancer survivors I meet the more I see similarities in strength and personality. Most of the survivors I know have a new found sense of humor about life. They laugh at things that other people would act offended about. Do not ever shame a cancer patient for making jokes about their diagnosis or situation. That may be the only way we can process and handle what is happening. Don’t be so serious all the time. If we are open to it learn how to joke with us. You may be surprised how making jokes can change our outlook and energy. Learn when it’s time to be serious and when it’s time to joke. Let us have fun when we can.
There are so many different ways you can help and this is just scratching the surface. This is by no means a complete guide on how to help but these are some good guidelines and ideas that either helped me or that I wish I had done earlier. Everyone’s treatment path is going to be different so be aware and learn to adapt. I hope that this guide helps caretakers understand us as patients better and I hope this helps us as patients understand why people react the way they do and how we can help to guide them. To everyone going through it, stay strong. To everyone who is willing to help, from the deepest part of my heart, thank you for your service.