Becoming a caregiver to someone with cancer means taking on a whole new world of responsibilities. You may find you’re suddenly in charge of appointments, medication schedules, daily chores, meal times, bathing, dressing–the list goes on. It’s a lot. And with so many moving parts, it can become too much very quickly.
That’s why it’s so important to have a written care plan for yourself and your loved one. Don’t confuse this with a doctor’s plan of care; your care plan is meant to manage non-medical issues. It will help you prepare for emergencies, make scheduling easier, stay organized, and reduce your stress levels so you don’t get burned out.
Talk to your loved one.
The person you’re caring for knows better than anyone what kind of help they need. If they are physically and mentally able to discuss their level of care with you, listen closely. Their voice is the most important one in this discussion. The more they share, the clearer everyone’s expectations will be.
Evaluate the situation.
After you’ve talked with your loved one and have a better idea of their needs, make a list of all aspects of their care you’ll be in charge of. Account for how intensive their needs are. Maybe they only need a hand after surgery or as they undergo chemo treatments. Or, maybe they need round-the-clock attention. No matter what, get in the habit of writing down appointments, medication schedules, and the kinds of assistance required. Also remember that the level of care they need could change down the road.
Make your team roster.
Family, close friends, doctors, home healthcare experts, people in your community. Make a list of everyone involved in your loved one’s care, even if they’ve only expressed their willingness to pitch in from time to time. Include their contact information so you’ll have it on hand in a pinch.
Have a family meeting.
Caring for someone with cancer isn’t a one-person job. Round up the family to get them involved, bring them up to speed, and set expectations. Hold these meetings regularly to keep communication open and provide a space for everyone to share their feelings and opinions.
Put Your Plan Together
With your team assembled and expectations set, it’s time to put your care plan together. If possible, make this a collaborative project with the people who will help you care for your loved one. Some basic things you should include:
- Contact info for all healthcare providers and care team members (phone numbers, email, addresses, etc.)
- Instructions for what to do in an emergency
- All emergency contact information
- An appointment and treatment schedule
- A task list for everyone involved (for example: “Meal prep – Greg, Sunday evenings”)
- A full list of medication and how to administer each
- Food allergies
- A reminder list of things your loved one needs help with (standing, bathing, paying bills, etc.)
- A prescription refill schedule
- Key medical information (allergies, immune system issues, dietary sensitivities, etc.)
Other Care Plan Considerations
Everyone’s care plan is different. The above items are general suggestions, but your plan can–and probably should–be much more detailed. Think about these areas as they relate to your loved one and fill out your plan accordingly.
Physical health and function
Can your loved one see and hear well? Can they stand and/or walk on their own? Do they need a home healthcare specialist to take care of wounds, catheters, drains, etc.? Make sure your care plan addresses any and all physical limitations and how to handle them. Include a list of things they need help with and any equipment that should be present in the home, like canes, walkers, wheelchairs, etc.
When it comes to daily living activities, like eating or bathing, talk with your loved one about their care preferences. Ask them what time they like to eat. Are they comfortable with someone helping them bathe or get dressed? Do they need help managing finances and banking? Ask plenty of questions and include it all in your care plan.
Mental and emotional health
Does your loved one have a history of depression, anxiety, or delirium? Include any mental or emotional health issues in the care plan so everyone is sensitive to the situation. Take note if your loved one starts showing signs of these conditions after having no known history of them. It may be time to discuss seeing a mental healthcare professional.
Aside from medication related to their cancer, does your loved one have any other diseases that require medication? Think diabetes, arthritis, and high blood pressure. Make a list of all medications and administration instructions for all of it, even if your loved one manages their medication themselves. You should also include storage, handling, and disposal instructions.
If your loved one has trouble remembering when or how to take their medicine, note that in the care plan and make sure someone is assigned to help. Finally, be prepared to update your plan frequently as medications and dosages change.
Finances and medical bills
Can your loved one manage their own financial affairs? This may be a sensitive topic for some, but it should absolutely be included in your care plan. If the person with cancer suddenly becomes too sick to take care of their money and bills, someone needs to be able to step in ASAP to keep things on track.
Try to get a sense of their earning vs. spending, where their income comes from, and how long their savings will last. Where can you find important documents like insurance policies and home titles? Get as much information as your loved one is willing to share and record it in your plan.
Write down what kind of coverage your loved one has and get familiar with their plan. If you need to answer questions about their insurance or manage healthcare billing concerns, you’ll want to be prepared.
Does your loved one struggle to control their urine or bowel movements? Can they bathe, dress, shave, or go to the bathroom without help? Can they get around safely in general? Sit down with your loved one and go over everyday activities they need help with. Then, get with your care team to delegate who helps with what.
Home life carries on, even when you have cancer. The grass still needs to be mowed, the dishes done, the dog walked. Talk with your loved one about a regular housework schedule. Make a list of chores and make sure everyone knows who’s responsible for what.
Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? List known hazards and a plan of action to address them. Write down the names and contact info for trusted repair services and contractors so, if something breaks, you’ll know exactly who to call.
If your patient has a will, a living will, a trust, or an advance directive, record that in the plan. Also include their healthcare proxy or power of attorney, if they have one.
Does your loved one have any hobbies, or belong to a club or faith-based group? If they’re still able to enjoy these things, make sure they have an opportunity to.
Supplies and equipment
List any medical supplies and equipment your loved one needs in the care plan. Bandages, walkers, feeding tubes, hospital beds, etc. Find out where they come from and write down the contact details in case you need to reorder anything or have something repaired. Be sure to also include any maintenance or operation instructions.
Put Your Plan into Action
When you’re done with your care plan, make sure everyone involved has a copy and go over it together as needed. Make a plan to check in regularly to ensure things are getting done and getting done correctly.
Consider delegating someone to take ownership of updating the care plan as needed. That won’t mean they’re in charge of everything–just that they’re responsible for making sure the plan is always up-to-date.
A care plan can change or become more detailed as time goes on to better serve your loved one and make your life a little easier. A comprehensive plan means that, in the face of most challenges, you won’t have to guess what the best course of action is. So remember: Your care plan can never be too specific!