Live Healthy Live Well

Five long years. That’s how long my mother lived with dementia. It was five years of watching that progressive disease take away the strong, stable and loving mother that I knew. Throughout those years, I found myself on an emotional rollercoaster. There would be days that she was mentally sharp that were followed by days of angry outbursts, vacant stares. My emotions were split between uncertainty, guilt, sadness, hope, frustration, and grief. While I understood most of the emotions, it was difficult for me to understand the emotion of grief. How could I be grieving someone who was still alive? What I have learned since her passing is that grieving someone who is still alive is a term called ambiguous loss.

Ambiguous loss can be experienced when a loved one is physically here, but may not be emotionally or mentally present in the same way they were before dementia. This type of loss is experienced by caregivers of loved ones who are living with such things as mental illness, brain injury and dementia. It is a profound sadness that lingers in caregivers who have lost a relationship with their loved ones.  Unlike grief that is experienced when a loved one dies, ambiguous loss can be difficult to cope with due to the frequent uncertainty of what has been lost or if the loved one will return to how they used to be. In the typical bereavement process grief tends to recede over time, and loved ones are able to have a distinct closure on the relationship. However, ambiguous loss is not a one-time trauma. It is an ongoing series of losses that occur as the disease progresses. In a sense, caregivers and loved ones are frozen in a fog of coping and grieving. This type of loss and grief can also bring the other aspects of the caregiver’s life to a standstill and can affect the caregiver’s career, friendships and other relationships.

As a way to manage the loss and grief that is felt while caregiving for a loved one with dementia, The Alzheimer Society suggests strategies for living positively with ambiguous loss and grief when caring for someone with dementia. Here are a few of their recommendations:

• Reflect on the losses, and have someone who will understand and allow you to express your feelings.
• Normalize and begin to accept your feelings of ambiguous loss by talking to others who have similar experiences.
• Stay Connected with family and friends and support groups.
• Look after your own needs. Eat well, get enough sleep and exercise. This may mean that you need to take a break from caregiving responsibilities.
• Let people know how they can help.  Rather than thinking that your family and friends already know what you need.
• Seek out information on dementia and what to expect. Empower yourself with knowledge.

Recognizing the emotions of loss and grief when caregiving for a loved one with dementia is the first step to help build resiliency throughout the caregiving process. Empowering yourself with knowledge and support systems will help you navigate the emotional tidal waves of ambiguous loss and grief.

Written by: Kathy Tutt, Family and Consumer Sciences Educator, Ohio State University Extension, Clark County

Reviewed by: Kellie Lemly MEd. Family and Consumer Sciences Educator, Ohio State University Extension, Champaign County

     Ambiguous Loss and Grief in Dementia: A resource for individuals and families. Alzheimer Society of Canada. Retried from https://alzheimer.ca/sites/default/files/documents/ambiguous-loss-and-grief_for-individuals-and-families.pdf#:~:text=Ambiguous%20loss%20is%20a%20type,the%20same%20way%20as%20before.&text=For%20example%2C%20you%20may%20feel,longer%20knows%20who%20you%20are.

      Boss, P. (2000) Ambiguous Loss: Learning to live with unresolved grief. Harvard University Press

     Boss, P. (2011) Loving Someone Who Has Dementia: How to find hope while coping with stress and grief. John Wiley & Sons

     Zaksh, Y. Yehene, E. Elyashiv, M. & Altman, A. (2019), Partially dead, partially separated: Establishing the mechanism between ambiguous loss and grief reaction among caregivers of patients with prolonged disorders of consciousness. Clinical Rehabilitation, Vol 33 (2), 345-356