Many caregivers don’t see themselves through the lens of being “caregivers” and get lost in the role day-to-day. It’s easy to lose sight of just how much responsibility you take on and the impact it can have on you, both good and bad.
This video discusses the profound impact caregiving can have on a person’s life—mentally, physically, emotionally, socially and financially—and why caring for caregivers is a smart investment.
Consider this caregiver task inventory—how often do you say “yes” to taking on each one of the following responsibilities for the person in your care?
- I coordinate medical appointments.
- I help with tasks of daily living, like cooking, cleaning and shopping.
- I provide emotional support.
- I monitor and supervise.
- I provide nursing care or other healthcare support.
- I manage their finances.
- I am planning their future.
- I manage their legal affairs.
- I manage and oversee their medication and/or treatments.
- I balance their care while supporting my own/our family.
- I care for them and work at a paid job.
- I transport them to where they need to go.
- I advocate on their behalf.
The more you find yourself saying “yes” to these care responsibilities, the more you need to be aware that caregiving might also be affecting your overall health and wellness. It’s important to accept that you can only do so much. As the intensity of your care increases, so do the risks to your health and your ability to be a good care companion.
The Government of Canada has published important information about the impact of caregiving—have a look at their study here.
Take our caregiver burnout self-assessment to see how you’re doing.
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).
Download our caregiver’s handbook for tips to help you navigate the healthcare system more easily and efficiently—and take care of yourself and your loved one in the best possible way.
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.
To help you be prepared and proactive when seeking help, we’ve collected resources for patient care, including doctor’s visit checklists and power of attorney forms for your province. Learn more and view these here.
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.
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.
Finding balance in a sea of challenges
While reminding caregivers to take care of themselves is easy, doing it can be hard—especially when most of your attention is on the person in your care. But that can also be a great motivator for self-care. Your ability to be an effective caregiver depends on your emotional and physical wellness, which means not losing touch with the people, places and things that energize you.
Setting boundaries as a caregiver starts with acknowledging that, even though you’re taking on a lot of responsibility, you also have the right to set limits on what you can and can’t do. If you feel like you’re taking on too much, or are being asked to do complex care tasks that make you feel uncomfortable or afraid, that’s a good time to clearly express your discomfort while also describing how you want the situation to change. Here’s a helpful exercise that can help you clarify boundaries, discover what you need, and clearly share those needs with family members and healthcare providers.
Exercise: Start, stop and continue
- Take a piece of paper, or use a notebook or journal.
- At the top of the sheet, indicate what your self-care goals are.
- Below your goals, create three columns, titling each “start,” “stop” and ”continue.”
To make it easier, we have prepared a worksheet for you. Download PDF
The idea behind the “Start, stop and continue” exercise is to help you evaluate what you are doing in terms of your care tasks, and what changes you want to make going forward to help achieve your personal health goals.
Mary’s GOAL is to improve her physical health, which she has been neglecting since she started providing care to her husband.
Mary wants to START taking 30 minutes every day before her husband wakes up to exercise in their home gym.
Mary wants to STOP eating fast food and instead take time with her husband to prepare meals, making it a fun and healthy activity for both of them.
Mary wants to CONTINUE asking her family members for help, so she has more free time to go on long walks, which relieve her stress.
Fatigue and burnout—are you at risk?*
Burnout is often a by-product of caregivers taking on too much. It’s a cumulative and gradual process. Over time, the wear and tear of the emotional and physical load becomes overwhelming, causing exhaustion and feelings of vulnerability, leading to a sense of being fragile. It can also be accompanied by anxious or depressed states.
Are you at risk? Download this caregiver self-assessment
If you checked frequently or always for any of the above, then it’s time to seek help from a healthcare provider, or your local health and social service network—because you have to take care of yourself, too!
Building a support network is one of the most important ways to prevent burnout. It can be helpful to do an inventory of both formal (professional) and informal (family) supports that can help you with care tasks.
*Not intended as a substitute for medical advice. Please consult your doctor if you are experiencing a health problem.