By Kate Landreth, Education and Learning Lead at Family Caregivers of BC (FCBC) and Wendy Johnstone, Director of Programs and Innovation, FCBC
Caregiving is often a winding path, with many twists and turns. Your role as a family caregiver is unique, dynamic, and varied, and you will experience different phases of caregiving over time. For example, caregiving may start with an acute diagnosis, followed by increasing care responsibilities, punctuated by a few hospital events, and then an eventual placement into long-term care. Or, an adult parent may care for a child with a disability over their lifespan, where the phases are less distinct and the care is ongoing. You may not experience every caregiving phase, including when the care recipient recovers and no longer needs care. Some phases may not be in the order shown, or exist at all. Still, hopefully, you may recognize some of the common challenges and emotions that accompany each stage in this model.
Awareness
The first phase of caregiving can feel the most challenging. You often feel uncertain about the future and are less informed about what’s happening, what’s needed, and what’s expected. Caregiving might start gradually with one or two activities of daily living for which the care recipient needs assistance or appreciates the help, or it may begin suddenly due to a crisis, diagnosis, or acute situation. Finding the right information and support are often the first steps.
Unfolding Responsibilities
In this phase, you begin to adapt to caregiving and the unexpected, whether it involves managing feelings (e.g., grief, anger, frustration, anxiety) or responsibilities (e.g., providing personal care for a spouse, or assisting with financial decisions for a parent). Caregiver responsibilities often come in waves of high intensity and commitment levels, and caregiving is rarely scheduled or predictable. This can lead to feelings of grief, sadness, and anger as you pause parts of your life to provide support. Increasing caregiving responsibilities can also lead to unexpected consequences in other areas of your life, such as quitting your job to provide care or a family member moving into your home.
Increasing Care Demands
This phase is often described as long-standing caregiving and involves caring for someone with long-term health issues such as frailty, dementia, or other chronic health problems. For some caregivers, this phase can last as long as ten years, putting them at high risk of burnout. During this time, caregivers often become entrenched in their duties and sacrifice their own health for the well-being of their care recipients. This is the time to ensure you are building a circle of support around you. Caregivers benefit from participating in caregiver support groups, where they realize they are not alone on this journey. See FCBC support groups here.
Caregiving over a longer period strengthens caregiver confidence. You may start to feel like an expert on the care recipient’s condition and are much more observant of their state. During this phase, seeking out health care and community-based support services is often helpful for both the care recipient and the caregiver. See our list of community supports here.
End of Life
During this final phase of active caregiving, it can be confusing and difficult to balance everyone’s needs and emotions. On the one hand, you are attending to the care recipient and maintaining involvement with them. On the other hand, you are grieving their losses and beginning to prepare for life after the care recipient has died, while also supporting other caregiver(s) and the broader family and friend group.
Grief and Bereavement
Caregivers are often so busy ‘doing’ their role, that when a care recipient dies or no longer needs care, a caregiver may feel adrift when their role ends. Life after caregiving can be accompanied by feelings of relief, grief, sadness, and confusion. Caregivers often face the loss of the person they were caring for as well as the loss of their caregiving role. Caregivers need time and support to reconnect with themselves and move forward in their life. This phase has the potential to be a time for a caregiver to re-frame their life.
Here are three steps to support you during the post-caregiving phase:
1. Feel the loss and grief: Give yourself time to pay attention to what’s going on in your body, mind, and heart. You could go to a special place in nature, or a favourite room in your home to connect with yourself.
2. Have one thing to look forward to each day: You may have more time and space in your schedule now, which can feel jarring when you’re used to being busy with caregiving. Notice where you can slow down and include meaningful activities in your daily schedule.
3. Reflect on your memories, stories, and life lessons: During caregiving, it may have been challenging to fully process and understand the positive and negative impacts it had on your life. Write down your memories and stories or talk with someone you trust. This is a way to uncover and heal stressful experiences, process your feelings, and reveal your path forward.
Being able to identify which phase of caregiving you are in, and then communicate it with others, is an important part of getting and receiving support and assistance. There will be many different emotions and life adjustments, and you will gain new strengths that will help you find meaning in your caregiver journey.
Related Resources:
New to Caregiving: How to Prepare and What You Need to Know
The Challenges and Benefits of Caregiving
Understanding Your Caregiver Needs Worksheet
Navigating the Healthcare System
Caregivers Can Plan for the Unknown Future
Family Caregiving: Don’t do it Alone
Anticipatory Grief Package Information for Patients and Families