The care path

Starting out

Caregiving starts at the point where you notice that someone you love is experiencing a health problem. Often, it can be accompanied by a formal diagnosis. This can be the most disorienting time because there are so many unknowns. In this early stage, you are likely gathering as much information as you can about the health issue, treatment options and prognosis (health forecast for the future).

Pitfalls to avoid: Because this can be an emotionally intense time, it’s important to take notes on information provided by healthcare professionals. Make sure you are also validating the information you gather. Don’t be shy to ask as often as you need: “Did I understand this correctly?”

Navigating the journey

This phase can be short or long, depending on the health condition of the person in your care. A lot of your time will be spent coordinating and managing care. Resourcefulness is your best friend. As much as you have a healthcare system to depend on, you’ll find yourself having to assume a lot of leadership around decision-making and care management. Knowing what you need and how to get it is key.

Pitfalls to avoid: 

As hard as it may be, this is a good time to be forward-thinking, planning for future needs. Many of the services you will need to access later on take time to put in place.

Changing roles

Caregiving is rarely the same over the entire journey. As the health of the person in your care changes, so will the roles you play. One day you may be care manager; the next, care advocate, and the day after that, family mediator. Your involvement can go from very mild to very intense in a short period of time. These role changes will test your resolve, but they are very common in complex care situations that also involve family dynamics and family histories.

Pitfalls to avoid: 

Accepting the unexpected is often the hardest thing to do as a caregiver. In every care situation, some things are lost, and new and rewarding opportunities are gained.

After caregiving

Many people struggle to find a new sense of purpose after devoting so much time to the care of another. Moving through this transition is normal and common among caregivers. Sometimes there is grief, sometimes relief knowing that someone is no longer hurting. For those coping with the loss of a loved one it can be one of the most challenging phases of the care experience.

Every marathon has a finish line. It’s okay to allow yourself to stop running and to catch your breath.  Self-compassion is an important gift you give yourself after sharing so much of that same kindness with another.    

Pitfalls to avoid:

Beating yourself up by constantly telling yourself you could have done more won’t change the past. It only darkens the present. Focusing your thoughts and feelings on moments you were grateful for will help silence that inner critic and reinforce the qualities in yourself that you want to celebrate going forward. Remember: No one is ever perfect in imperfect situations.