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Caregiving and Dementia: Navigating Ambiguous Loss and Grief

Your loved one is there but not there. They may be sitting right next to you, holding your hand, looking into your eyes, but they really aren’t there in quite the same way.

For those with Alzheimer’s and other forms of dementia, they may be physically here but not mentally or emotionally present as they once were before. For those who love and care for them, it is a constant, daily reminder of just how challenging this disease can be.

Dementia can confuse roles and relationships: Is that still my mom? Do they even know who I am? It can also cause insurmountable grief and loss. Dementia creates a great deal of ambiguity as the progression creates continual losses through the disease process.

“An adult daughter caring for her mother may describe feeling more like a parent,” said Lori Nisson, a licensed clinical social worker and Family and Community services director at Banner Alzheimer’s Institute, and “A husband caring for his wife may describe feeling more like a caregiver than a spouse. It can trigger what caregivers sometimes refer to as feeling they are on an emotional rollercoaster.”

Ambiguous Loss

Caregiver stress and burden may sometimes be misunderstood, but the real culprit according to Nisson, may very well be ambiguous loss.

“Ambiguous loss, a term coined by Dr. Pauline Boss, describes the grief one may feel for a loved one who has dementia,” Nisson said. “The person is physically present but psychologically absent or changed. Ambiguous loss is a loss that is unclear, has no resolution and no predictable ending or closure. This can be confusing and overwhelming for family caregivers and cause them to feel overwhelmed and immobilized."

While it is very common to feel ambiguous loss, recognizing these feelings and understanding and navigating it can help ease the effects.

Nisson shared ways you can work through these feelings, begin to grieve the losses and stay connected and present for the person you love while also building up your strength and resiliency.

Tips for Navigating Ambiguous Loss

  • Acknowledge your sadness and take time to grieve. Feelings of fear, anger and guilt are normal, share them with supportive friends, a support group or a health care professional.
  • Let go of what you can’t control. You can’t control your loved one’s memory loss, but you can control your reaction. Take hold of what you can and how you respond to situations.
  • Connect with others. As your relationship becomes more one-sided, connect with others who can be fully present and support you.
  • Ask for and accept help. Remind yourself you are doing the best that you can and it’s OK to ask others for help and support when you need it.
  • Take care of yourself. Your role as a caregiver continues to change as your person does. Give yourself permission to take care of yourself while caring for your loved one, both are equally important. Stay physically active, eat well, take personal breaks and do what you need to relieve stress.
  • Find a creative outlet. You can find creative ways to express your grief and loss through writing, painting or other visual art forms.
  • Allow yourself to still have hopes and dreams. Allow yourself to grieve the changes in your life plans but give yourself space to transform your expectations and make a new plan for the future based on the positive things you have in your life.
  • Find a support program. Banner Alzheimer’s Institute and Banner Sun Health Research Institute offers a group program called Steps to HOPE to provide family caregivers the opportunity to learn about ambiguous loss and improve well-being in family caregivers.

Navigating Ambiguous Loss During COVID-19

“COVID-19 like dementia creates ambiguous loss,” Nisson said. “We don’t know how long it will last, how deep the impact will be and if things will ever quite return to the way they once were. Understanding ambiguous loss provides a pathway for us to accept and live with a new reality. We let go of what we can’t control: dementia and the pandemic, and take control of what we can – how we chose to cope."

Some tips for managing this pandemic:

  • Remind yourself these are difficult circumstances, but you are resilient, and you will make it through. Both caregiving and managing through a crisis make you a stronger person.
  • Your flexibility increases your strength. Adaption requires seeing the upside of situation, not just the losses and challenges.
  • Learn to tolerate and feel comfortable with the uncertainty of life. Cease resisting the challenges and begin to go with the flow.

Help Is Just a Click Away

To learn more about the Steps to HOPE program, ambiguous loss lectures and other caregiver support programs at Banner Alzheimer’s Institute and Banner Sun Health Research Institute, visit banneralz.org.

“These programs explore the nature of dementia and how role changes can create challenges in day-to-day living for caregivers and their loved ones,” Nisson said. “Participants learn how to identify these changes while implementing strategies to promote wellness, resilience and improve overall quality of life.”

You can find other resources about Alzheimer’s and related forms of dementia on Banner Health’s health care blog.

Alzheimers Disease and Dementia Behavioral Health Caregiving COVID-19

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