Understanding Caregiver Grief: Tips to Help Families Cope

While many don’t realize it, the experience of grief does not belong solely to those whose loved ones have died. Grief can occur in other life experiences. One of them is caring for a loved one as they pass through the stages of dementia.

Grief expert, professor, and author Kenneth J. Doka remarks, “Grief has been identified as the constant yet hidden companion of dementia.” How true that is.

Often described as “ambiguous grief”, the grief associated with caring for an individual with dementia is unique in that it comes and goes in waves as a loved one’s state of dementia present new emotional challenges and the caregiver witnesses their loved one slipping away from the person they have known and with whom they have shared a life.

For those caring for a loved one with dementia, it is important to understand that, as difficult as it is, your grief is normal. You may also be experiencing the companions of grief: anger and guilt. Together, these feelings create an emotional rollercoaster that can be overwhelming.

Education can help caregivers to better tackle these feelings. First let’s start with the Alzheimer’s Association’s 5 stages of grief:

1. Denial. Hoping that the person isn’t really that ill and will get better. Normalizing the changes.
2. Anger. Being frustrated with the loved one, feeling abandoned by family members, resenting the demands of caregiving.
3. Guilt. Having unrealistic expectations, “I should have done …” or “I must do everything for him/her …” Feeling bad every time you laugh or enjoy yourself. Regretting things about your relationship before the diagnosis. Feeling bad that you can’t care for them in your own home. Wishing they would go away or even die.
4. Sadness. Feeling overwhelmed. Crying frequently. Withdrawing from friends and social activities. Withholding your emotions or displaying them more openly than you would normally.
5. Acceptance. Finding new ways to live in the moment. Discovering meaning and purpose. Appreciating the growth from surviving the loss. Regaining your sense of humor.

These stages of grief may occur in any order as the stages of dementia continue to impact your loved one’s memory and behavior and how you relate to them. You will move in and out of each stage over time.

Understanding this ambiguous form of grief is just the beginning of the caregiver journey. There are things that all family caregivers can do to take care of themselves and build a foundation of inner strength to help navigate the road ahead.

The Alzheimer Society in Canada has published some great tips that we’ve summarized below:

• Allow yourself to feel the pain. Attempting to push it aside can result in increasing or more prolonged pain.
• Cry. Let it out. Tears are healthy and the release helps relieve some of the pain inside. Sometimes, when the loved one is not present, it can be helpful to find a place by yourself and shout or scream, releasing your anger in a safe place.
• Share your pain. While this is difficult it does help to diminish some of that pain. It may be easier to share feelings with a therapist, a trusted friend, or someone outside the immediate family. Joining a dementia support group can be helpful, providing a supportive environment with others in similar situations.
• Keep a journal. This provides a private place where feelings can be expressed without needing to hold back. The act of writing down all feelings of anger, guilt, and fear is a release that can help caregivers to gain some control over their situation.
• Consider your own needs. While it may be difficult to turn your loving attention towards yourself, it is important at this time to take care of your own health, both emotional and physical. Don’t neglect check-ups and other health considerations.

You can access more tips and information from the Alzheimer Society here. You can also access videos and other information on our Anthem Memory Care resources page.

It is important for family caregivers to above all be patient with yourself. Treat yourself well. When others offer to help, accept their help. Caregivers are some of the most selfless, dedicated individuals around. We know because we talk with them every day.

The grieving process for caregivers of loved ones with dementia is unlike any other. Every caregiver’s journey is as unique as their own circumstance. In all cases, however, understanding the many valid emotions that ebb and flow during that journey is essential to living each day as it comes and finding moments of peace and understanding along the way.

Feel free to reach out to any of our Anthem Memory Care communities. We understand the challenging journey you are on and we are here to help!