[6] Horizons: Ambiguous Loss

Dementia Horizons | Workshop 6 | Ambiguous Loss

Video Module 6 Transcript

I want to welcome you today. Thank you for being here. Caring for a loved one with Dementia can be a challenging and emotional journey. Dementia is a progressive condition that not only affects the individual but also their family members and caregivers. One of the unique challenges of Dementia is dealing with ambiguous loss, which is the feeling of grief and loss that arises when a person is physically present, but mentally and emotionally absent. Our talk today aims to provide you with practical strategies to adapt to ambiguous loss and navigate the complex emotions that come with caring for someone living with Dementia.

Ambiguous Loss

Psychotherapist Pauline Boss coined the term ambiguous loss to describe a loss that occurs without closure or clear understanding. The concept evolved while working primarily with military families, whereby women who were married to spouses were missing in action during wartime. They did not know if their spouse was alive or dead. Am I a widow? Not a widow? How do I live my life in this state of limbo? In the context of Dementia, ambiguous loss occurs because the person with Dementia is physically here, and not really or consistently here psychologically. In some situations, one may not even remember being married or the names of one’s spouse or children. This is a hard truth to accept. Understanding that anatomical and cellular changes in the brain are underlying the lack of recognition and emotional disconnect may offer some comfort.

Another learning is that fatigue and anxiety can actually bring about more forgetfulness and confusion. Families may experience their loved one with Dementia clearer, or more normal, in the mornings after a good night's rest. Later in the afternoon, they seemed less engaged and more forgetful. Families may erroneously conclude that the person is just trying to get attention. When comparing visits, families may feel like they are experiencing two different people, or whoever visits in the afternoon may find their loved one less able to focus, perhaps more anxious or irritable, because the person with Dementia looks the same on the outside. The changes in thinking and behavior can understandably lead to feelings of grief, frustration, and confusion for family and friends who visit in the evenings in attempting to make sense of these changes.

Ambiguous loss is a normal and valid reaction. We hope that by understanding the nature of ambiguous loss, families can better cope with the arising emotions and find ways to adapt to their new reality. Start by acknowledging your feelings. It's normal to feel a range of emotions when caring for someone with Dementia, including sadness, guilt, exasperation, and anger. Acknowledge these feelings and allow yourself to experience them without judgment.

Continue educating yourself about Dementia on an ongoing basis. Understanding the progression and symptoms can help you make more sense of your loved one's behavior and reduce frustration. Educating yourself can also help you set realistic expectations for your loved one's abilities. Focus on the present moment. Instead of dwelling on the past or worrying about the future, focus on the present moment with your loved one. Engage in activities that bring you joy and allow you to connect with your loved one in meaningful ways. Seek support. Caring for someone with dementia can be isolating, so it's important to seek support from others who understand what you're going through.

Practice self-care. Caring for someone who lives with Dementia can be physically and emotionally draining. Make time for activities that help you relax and recharge, such as exercise, meditation, or spending time with friends. Set realistic expectations. Recognize that you may need to adjust your expectations for your loved one's behavior and abilities as their Dementia progresses. Focus on what they can still do rather than what they have lost. Maintain a sense of humor. Sometimes, finding humor in difficult situations can help lighten the mood and reduce stress. Look for moments of joy and laughter in your interactions with your loved one.

Find meaning and purpose. Despite the challenges of Dementia caregiving, many caregivers find meaning and purpose in their role. Focus on the positive aspects of caregiving, such as the opportunity to show love and compassion in ways you did not know possible to your loved one. Seek professional help. If you are struggling to cope with the challenges of Dementia caregiving, don't hesitate to seek help from a mental health professional. If you are feeling persistent anger, resentment, and irritability, it is wise to connect with a therapist for more intense counseling. Therapy can give you the support and coping strategies to navigate this difficult time.

In conclusion, practice gratitude. Cultivating a sense of gratitude for the time you have with your loved one, despite the challenges, can help shift your perspective and foster resilience. Caring for someone with Dementia is a challenging and emotional journey, but it's important to remember that you are not alone. By acknowledging your feelings, seeking support, and practicing self-care, you can adapt to the ambiguous loss that comes with Dementia, caregiving, and find meaning and purpose in your role. Thank you for being with me. Ambiguous loss is challenging by its very nature, and yet you choose to join us today to watch, listen, and learn, so that you can deal meaningfully with the grief and undeniable changes. Those are characteristics of a healthy and curious mind, a mind well prepared to take positive steps forward at the most appropriate pace. Thank you again.