You’ve probably heard the saying: “Put your own oxygen mask on first.” As a caregiver, it can often feel selfish or uncomfortable to give voice to and acknowledge your own needs and emotions — after all, you’re not the person dealing with a diagnosis or the side effects of treatment. However, everyone in a support system will have an emotional response to a cancer diagnosis. It’s absolutely vital that you check in with yourself and move through the stages of grief in order to process what is an inevitably traumatic and taxing process.
Besides working through the five stages of grief, you may battle with caregiver’s guilt and find yourself questioning your identity, asking questions like:
- “Who am I without being a caregiver?”
- “What do I do with my time when I’m not caregiving?”
- “Could I have saved my loved one if I did something more?”
It’s important to process these questions and emotions to prevent more severe lapses in mental health (especially if you have a pre-existing mental illness). This article aims to be a resource in navigating the waves of grief that occur before and after your loved one passes, especially as someone who is intimately related to them and their care.
Defining Different Types of Caregiver Grief
You’re probably familiar with hearing about grief when someone passes on. The caregiver’s grief process is unique because grief and loss start before the death of the loved one.
There are several subtypes of grief that you may experience as a caregiver after a diagnosis and during treatment. It’s also possible that you may experience different types of grief at the same time. Here are the most common:
- Anticipatory grief: Often called “anticipatory grief”, it’s a normal emotional response to prolonged illness and treatment, helping you process a potential death or loss in quality of life before it happens.
- Ambiguous grief or ambiguous loss: Even though your loved one is still very much alive, they aren’t present in the way they used to be — or at least not consistently. They may suffer from a lower quality of life or have significant personality changes as a result of the neurochemical side effects of surgeries or treatment.
- Renewed grief happens when someone fades in and out of lucidity as a cancer patient might do while in hospice or ICU care.
The Stages of Grief
Regardless of which type of grief you may experience, it’ll most likely cycle through the typical stages: denial, anger, bargaining, depression, acceptance (and the recently added “finding meaning”). It’s important to note that you will likely not go through each stage in a linear fashion, often cycling through or skipping stages as time goes on.
The original five stages of grief theory rose to prominence in 1969, when psychiatrist Elisabeth Kübler-Ross published “On Death and Dying.” Her model of the five stages of grief, developed from her work with terminally ill patients, was:
1. Denial and isolation - This first stage may start before the loss occurs if the death of the loved one is expected, or it may begin immediately at the time or shortly after the loss. It can last anywhere from a few hours to days or weeks. The feelings experienced in the first stage of grief may be fear, shock, or numbness. You may have pangs of distress, often triggered by reminders of the deceased. During this time, you may feel emotionally “shut off” from the world, avoid others or avoid talking about the loss.
2. Anger - The next stage can last for days, weeks, or months. It is when the earliest feelings are replaced by frustration and anxiety. This stage can involve anger, loneliness, or uncertainty. It may be when the feelings of loss are most intense and painful. You may feel agitated or weak, cry, engage in aimless or disorganized activities, or be preoccupied with thoughts or images of the person you lost.
3. Bargaining - This stage is likely to be shorter than others. You may be struggling to find meaning for the loss of your loved one, or you might be asking yourself questions like “could I have done more?” It’s important to remain realistic about your abilities and to give yourself grace. Trust that the doctors had or have the best intentions, and you showed up in the ways you could. No one is a perfect caregiver. Depression - As life changes are realized, depression may set in. This stage is used to describe a grieving person who feels overwhelmed and helpless. You may withdraw, become hostile, or express extreme sadness. During this time, grief tends to come in waves of distress.
4. Acceptance - This last phase of grief happens when people find ways to come to terms with and accept the loss. This acceptance typically occurs in stages, as you go through various cycles of grief.
Finding meaning: Many people look for “closure” after a loss. Kessler argues that it’s finding meaning beyond the stages of grief most of us are familiar with—denial, anger, bargaining, depression, and acceptance—that can transform grief into a more peaceful and hopeful experience.
How to Start the Healing Process
There is no one right way to grieve, which is probably comforting and frustrating. It can be tempting to want to speed through the stages of grief to reach “acceptance” — but, you can probably deduce that healing is not as simple or easily defined.
What’s most important is seeking help and remaining connected to friends and family. Building up your support system and being honest about needing help is an important part of your grieving journey.
Additionally, here are a few reminders and resources that may ease the waves and cycle of grief as they come on:
- Let yourself feel. Grief should not be ignored. Unresolved grief can affect your physical and emotional health and keep you from being an effective cancer caregiver.
- Start small and have a plan in place for after and during the death. Better Help or Talkspace is a wonderful solution, especially if your schedule is too packed to find time for an in-person appointment. They also have financial aid and offer a sliding scale for their clinicians.
- Join a support group for cancer caregivers. Griefshare offers grief-specific groups, and The Dinner Party connects grieving people with others in their area for monthly or quarterly potluck dinners.
- Begin a daily habit. Meditation, journaling, yoga, walks, or chatting with friends are all helpful tools in moving through the different stages of grief. Find one you enjoy and start small. You don’t have to do an activity every day, but getting in the habit will be helpful as your emotions ebb and flow.
- Take care of your physical needs. You can't separate the mind from the body. When you’re going through an intimate loss, going back to basics is key. If you feel better physically, you will be better able to cope with grief and other sources of caregiver stress. Get plenty of sleep and exercise, eat a balanced and nutritious diet, drink plenty of water, stretch and find time to relax. Think of it as caregiving for yourself.
- Anticipate difficult times. Holidays and anniversaries can be difficult times for caregivers and cancer patients. Anticipate these reactions and go back to the basics: rest, ample sleep, light movement, and good nutrition, as well as seeking extra help and support from friends and family members.
- Start a new activity or sign up for a class. When your loved one passes away, ease into the change in routine and loss of time caregiving into something that is meaningful, challenging, or fun. Keeping this commitment will also give you something to look forward to and enjoy, which can be incredibly healing in the grieving process. Momentum is often the best healer.
While grieving is a difficult and painful process, it’s a reminder of how much you love the person you care for. Stay connected to your support system, be kind to yourself and be patient as you cycle through different stages of the grieving process.