Caring for a cancer patient at home can be a demanding job. If you’re new to the cancer caregiving process, it’s normal to feel overwhelmed or caught off guard.
Whether you’re a spouse, friend, parent or sibling, your loved one will greatly depend on you for all sorts of things. Whether it’s driving them to treatments, or simply helping with chores around the house, it’s important to be prepared.
Here, we’ve gathered some advice from others who have been where you are right now. We hope this makes your caring journey easier and provides you with the guidance you need to move forward.
1. Collaborate With Medical Professionals
Cancer treatment can be a rapidly evolving process. From oncologists to nurses, consider developing an ongoing relationship with your cancer care team. Don’t be afraid to ask questions throughout the treatment and after. A solid team will listen to all of your concerns, provide empathy and give you the information you need.
Remember these are experts who are highly trained and experienced in their field. When you need information, it’s best to get it from them and not outside sources.
“Google is not your friend. Get your information from your medical professionals (hopefully, they are as willing to spend time with you as mine were – such an amazing team).”
2. Ask Questions & Take Notes
Cancer is exhausting, and cancer patients are often too tired and overwhelmed to know what questions to ask. This is where you come in.
Ask as many questions as you need and write down as much information as you can. You can ask about the type of cancer, the prognosis, the planned course of treatment, at-home care advice, diet recommendations and anything else that comes up.
If you’re nervous about asking questions, try writing them down ahead of time. Keep a notepad with you or use your phone to type out questions that pop up. This will help you feel better prepared. Feel free to ask your questions during any in-person visit or over a phone call. If something isn’t clear, ask the medical professionals to explain it more thoroughly.
There are a lot of logistics when it comes to dealing with cancer and caring for cancer patients. You’ll need to keep track of an array of details and information, so consider writing down as much as you can to stay organized.
Ask others for help as well. If you have a friend who is skilled at spreadsheets or is a super-organizer, you can consider reaching out to them for help. Maybe they can help take notes at the next appointment or organize your previous notes. Know that you don’t have to do everything on your own.
“Learn as much as you can about the disease and the treatments. Your loved one is too tired to deal with the logistics. It’s our job to be their advocates.”
“Allow others to help you! You cannot do it all. Keep a journal of each appointment and write everything down. Ask questions!”
3. Be There to Listen
As a caregiver, you may have the natural instinct to try and fix a situation right away. But sometimes that’s not what a cancer patient needs or wants. Instead, they may simply need an empathetic ear to listen to them.
Cancer patients are often going through something extremely hard, complicated or scary. They may need help processing their experience. While you might want to immediately make them feel better, that won’t always be what’s best.
Focus on helping them process their emotions by actively listening. Validate their thoughts and feelings, and hold off from giving advice or suggestions. This will create a safe environment for them to freely express themselves and unload everything they’re feeling inside.
“Advice that I would give to someone who’s caring for a cancer patient would be to listen. Listen actively. Listen with a desire to understand, not to give airtime, not to reply, not to judge, just to understand.”
4. Give Your Loved One Space When They Need It
There are going to be days and even weeks when a cancer patient will highly depend on you. You’ll help them with meals, ensure they take their medication on time, and run errands on their behalf.
As a caregiver, and as a friend or family member, it’s completely normal to unconsciously develop a mindset that they need you every second of the day. This is a common thought process to have, but not always true.
As time unfolds, consider giving your loved one some space and independence. They’re likely frustrated already about having much of their autonomy taken away. If there are things they can and want to do on their own, allow them to have that opportunity.
“I was the one being cared for and appreciated the love and support I received, but wished that on those days I felt like doing more for myself, which really wasn’t often during radiation and chemo, that my caregivers would have let me.”
“I wanted to do too much for my mom with cancer. She needed her independence as much as she could tolerate.”
5. Prepare for Chemo Side Effects
Going through chemotherapy can create a lot of uncomfortable side effects. These can often be concerning or surprising to caregivers, so it’s best to be prepared.
A common side effect is needing soft foods that are easy to swallow, so you may consider doing some research and preparing these foods beforehand. If your loved one experiences a sore or dry mouth, avoid salty or spicy foods.
Other side effects include:
- Hair loss
- Nausea and vomiting
- Skin and nail changes
- Decrease in appetite
- Concentration difficulties
- Insomnia or extreme tiredness
- Upset stomach and constipation
- Emotional withdrawal
- Personality changes
Remember to talk to your medical team. Each type of cancer is different and will come with its own set of symptoms. Ask what to expect and how to best deal with these side effects.
“Small tip, get plastic silverware. It helps when they eat with the metal taste in their mouth.”
“The personality changes they experience. My gramps had cancer when I was 13 so I didn’t understand at the time that it caused him to go through all kinds of changes.”
“There are so many different types of cancers. The sort of care you offer depends a lot on the kind of cancer that your loved one has.”
6. Embrace Any Emotions You Feel
Being a caregiver is noble, but it’s also incredibly challenging. Not only are you taking on a lot of responsibility, but you’re also taking care of someone who might feel a lot of negative, disheartening emotions. Eventually, these emotions can get to you.
It’s best not to keep things bottled up. Allow yourself to feel and process. Whether you need to cry, pray or take a time out, permit yourself to do so.
Some days will be good, and some days will be bad. Whatever you’re experiencing, give yourself the same grace you’d give to others. Take it one moment at a time and be gentle with yourself.
Sometimes journaling can help with working through the overwhelming amount of emotions you may feel. Consider using a notebook to write down your thoughts or questions as they arise. You can make bullet lists of positive affirmations, or even read back on old entries to find power and strength.
You can also use the CaringBridge Journal to write through your thoughts and feelings. Add to the Journal as often as you’d like to document the highs and lows of your loved ones health journey. Know that these Journal entries can be completely private, or you can publish them for family and friends to read.
“My mother had cancer and she was very strong, but she needed my help. Sometimes she never liked the way I cleaned her house. Then, she would need me for something that was very hard for both of us. It didn’t matter to me, I was there and I would have done anything for her. You just have to have the love and patience for a loved one. You may slip off and cry or you may cry together. It’s just something different every day, but we made it and she made me the strong woman I am today.”
7. Join Support Groups for Cancer Caregivers
Even if you have the support of family and friends, they may not totally understand what you’re going through. That’s where Caregiver Support Groups can be incredibly helpful.
These support groups are filled with people going through the same situation as you. Whether these groups are in-person or online, you’ll find people who can empathize with all the challenges and emotions you’re going through.
Vent about your frustration, receive words of encouragement and even get advice and recommendations. You’ll also have the opportunity to inspire and help others by sharing your story.
“It would be a good idea to find a therapist who specializes in supporting caregivers for cancer patients.”
8. Reach Out To Friends & Family for Support
Even though you’re excellent at giving help, it can be difficult to receive it. When it comes to caregiving, try to get in the mindset that you deserve support as well.
Know that the more people in your life who know what’s going on, the more options you have for support. Reach out to family and friends to see who can help you with tasks. Whether it’s running errands, cleaning the house or bringing over meals, a little can go a long way.
Remember that communication is key with this. Oftentimes, people want to lend a hand, but they may not know how. It’s important to bring them into the fold so they’re there when you need it most.
By using the CaringBridge Planner feature, you can communicate specific items you need help with to friends and family, all in one place. With CaringBridge, you don’t need to send multiple calls, texts or emails to reach out for support. The Planner allows you to gather your loved ones and help them rally around you and the person you’re caring for.
You can also post health updates and receive supportive messages from others. Having everything in one place frees up your time and makes it easy to ask for help.
“Allow your friends to bring meals, but tell them to go away when you’re feeling anti-social; they won’t be insulted.”
You Are Stronger Than You Know
Remember that, despite overwhelming obstacles, you’ve managed to persevere. You’ve faced fears, taken action and overcome great challenges. That is the mark of a strong, courageous person.
What’s Your Story?
Being strong doesn’t mean you’ll necessarily feel strong, and many times you’ll need inspiration and support. We hope this list gave you some ideas to help you move forward. And if you have other tips on caring for cancer patients, we’d love for you to share your ideas in the comments below and with our community.
Don’t Go Through Your Health Journey Alone
You can stay connected to friends and family, plan and coordinate meals, and experience love from any distance.
All of this is ready for you when you start your personal CaringBridge site, which is completely free of charge, ad-free, private and secure. Don’t spend another minute alone!
Are you looking for more information on caring for loved ones? Call the experts at At Home Care Missouri.