New to caregiving? 10 steps to get you started

Becoming a caregiver for a loved one with a serious illness can be overwhelming and a lot to handle. You may have already been supporting your loved one throughout their diagnosis and treatments, but now you’re looking to take over a little bit more of the practical aspects as well. You might be wondering what exactly you need to focus on, what details you're missing, and what actions you should take immediately.

We unfortunately can’t do it for you (as much as we'd love to help!), but we can assist you in organizing your priorities. After sitting down and speaking with experienced caregivers, we've created a checklist to guide you through the first steps of your caregiving journey.

Below, you’ll find a list of potential tasks and considerations. Remember, not everything may apply to your specific circumstances. Feel free to share this list with family, friends, and others in your support network.

Ready? Let’s get started.

• Obtain access to all medical records.This may include a detailed medical history, doctor’s notes, lab results, health insurance information, advance directives, hospital discharge summaries, allergy information, emergency contact information, and more. Your healthcare team will be able to help you gather the information you need.
• Understand your loved one’s diagnosis, prognosis, and treatment plan. If possible, schedule a meeting with your loved one’s healthcare team to make sure you have all the information you need. Check out the list of questions we've prepared for you.
• Make a plan for your loved one’s care, knowing that this will probably change over time.This should address both immediate and long-term needs. Involve your loved one’s healthcare team. This should cover your loved one’s preferences, care needs, treatments, medications, and support needs.
• Have a conversation with your loved one about their wishes, preferences and needs.A social worker, a member of the healthcare team, or a counsellor can also join the conversation for added support.
• Create a caregiving schedule. Involve other family members and friends who will take part in caring responsibilities, as needed. This should include time for regular medical appointments, rest periods, and any recurring care needs.
• Establish your network of support. Reach out to family, friends, and people in your community that you may be able to rely on for support. They may not all need to be involved on a daily basis, but may be able to support with groceries or accompanying your loved one to their medical appointments on occasion.
• Prepare a list of current medications (with dosages and schedules). Include any relevant information such as side effects or whether to take the medication with food.
• Prepare a list of emergency contacts. Including doctors, family members, close friends, and other useful contacts. A list can be kept at a convenient location in your loved one’s home and shared digitally with anyone involved in your loved one’s care.
• Prepare an emergency kit. Prepare an emergency kit with medical information, essential items and medications.
  • A week’s worth of prescription medication
  • Medicines for pain relief, allergies, nausea
  • First aid kit with bandages, antiseptic, tape, and scissors
  • Any necessary medical equipment specific to your loved one’s condition, such as asthma inhalers, insulin, syringes, etc.
  • Key medical information and the medication list
  • Copies of health insurance cards
  • Advanced directives or powers of attorney
  • Information on your loved one’s specific medical condition or equipment, like pacemaker ID cards or allergy lists.
• [ ]  Give yourself grace.This is a marathon, not a sprint. You do not need to know everything and be on top of everything right now. You are still adjusting. Be kind to yourself, and give yourself rest when needed.

These first few weeks are all about getting up to speed, gathering any information you need, and make some immediate plans to ensure the best possible care for your loved one.

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