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Understanding and Coping with Ambiguous Grief as a Caregiver

By Lauri Scharf | 10/15/2020

An older couple comforting each other

What do you call a loss that isn’t?

‘Lose’ is a verb that implies to misplace or set free. While we may not intentionally lose something, the result that follows can be an inconvenience or a welcomed change. When we think about losing people, we may even first think of being unable to find them in a store or misplacing them in a crowd. ‘Loss,’ however; is a noun meaning that someone or something was taken away. It often comes with the connotation of permanence, and never again being able to have what was lost back.   

Loss is not an unfamiliar concept, as we all experience it in some form through relationships with people and changes in our health. Grief is described as a process that we go through to cope with, move through and move on from a significant loss. However, there is a type of loss and grief that caregivers experience that has its own unique properties.

What is ambiguous grief and how do we experience it?

What do you call a loss that isn’t? As caregivers, we may have slowly seen our role change from loving spouse, companion or friend to full-time caregiver, sole decision-maker and lone partner. The loved one we care for is physically present, but emotionally and mentally impaired by their own condition or cognitive decline. There can be many reasons for this form of loss: dementia, Parkinson’s disease, traumatic brain injury, addiction. It may feel like the clock has stopped moving, but only for us. Because of this, we may experience a loss of our dreams of growing old together with a loved one, or the loss of sharing in a mutual relationship where we are both able to participate equally.

We may try to adjust to this new normal, the repeated questions, the lack of response, the inability to complete a job without several prompts, but frustration and anger appear instead.  As the days continue to repeat the same pattern, our thoughts can turn to wanting change. If only I could go back to how it was five years, or even two years ago, we may think. When we realize that this is not going to happen, our thinking may turn to, let it end” and “give my loved one peace.” We may feel guilty for not being able to adapt to the new role, or question if we are able to be the caregiver a loved one needs.

‘Ambiguous grief’ or ‘ambiguous loss,’ a term coined by researcher Dr. Pauline Boss, is the name given to these thoughts and emotions. There is no closure to the situation or even an apparent understanding of why it has happened. It looks and feels different than other grief because we have not experienced the physical loss of a loved one, and yet the sense of loss is real. Well-meaning family and friends may not be able to recognize our grief, and thus offer little or no empathy. On the other hand, some people may try to relate to us and share their grief experience in losing a loved one to death. 

How can we cope with ambiguous grief? 

This is our journey and our reality. While there is no one right way to maneuver through this time, there are some steps we can take to help you with this process. We can:

  • Allow ourselves to see this is a grief and a loss that does not have a true resolution. While we may not be able to change the circumstances, we can begin the grieving process as we adjust to our new role.
  • Make an inventory of our skills as a caregiver. We may start by identifying tasks that we feel we can do and tasks where we would like help. Then we can find the help we will need to support you through family, friends and community resources. We don’t need to be embarrassed if we need to ask for help. Care coaching programs like WeCare..Because You Do can guide us through this new normal and help provide us with resources and steps to live a healthy life.
  • Know that a loved one is not the diagnosis or the disease. We could not control the circumstances that lead to the disease, and we may not have control over its progression.
  • Build a care team and the resources and care we need for ourselves. This may be through a support group to meet others who are experiencing similar situations, or seeking professional help from a counselor, clergy person or other expert to recognize and cope with our emotions.
  • Find ways to reminisce on happy memories that focus on the priceless times we had with a loved one, rather than on things that were lost
  • Schedule respite for ourselves on a regular basis, not only to give ourselves a break, but also as an experience of self-love.

The caregiving journey is not without its detours, closed roads and life delays, but we should make it a point to look for the little joys that are also along the way. Find the joy and potential in a new sunrise, experience the gift of laughter and embrace the gift of love. 

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