Dealing with the Anticipation of Losing a Loved One to Alzheimer’s
Melissa Murphey’s father received a dementia diagnosis at the age of 84 in 2015. As his condition worsened over the past ten years, she felt a sense of loss. She reminisces about missing his guidance in life, storytelling, humor, and impactful words that influenced her decisions.
Gradually mourning her aging father while he is still alive differs from Murphey’s experience after losing her mother. When she was 21, her mother passed away suddenly from an aneurysm at age 52, giving her a unique perspective as she deals with her dad’s situation.
We acknowledge that we will eventually lose that individual, place, or thing, leading us to proactively experience the sorrow and grief associated with it.
Expressing Gratitude and Coping with Anticipatory Grief
“I am grateful to have my dad in my life, especially after losing my mom while in college,” shares Murphey, reflecting on the significant impact of his father’s presence. Despite the bittersweet nature of this experience, it has provided him with the opportunity to delve deeper into his father’s life journey as an Irish immigrant, appreciate his strong work ethic, and strengthen their bond.
Understanding Anticipatory Grief through Gratitude
For Murphey, gratitude serves as a powerful tool in processing anticipatory grief, which involves mourning a loss that is anticipated in the future. According to psychotherapist Gina Moffa, LCSW, this type of grief involves preemptively experiencing a sense of loss for a person, place, or thing that we know will eventually be gone. By expressing gratitude, individuals like Murphey can navigate these complex emotions and find solace in their appreciation for the present moment.
Understanding Anticipatory Grief
Anticipatory grief, as described by The Enlightened Mind, is characterized by intense feelings of sadness before experiencing a loss. This emotional response can occur when an individual anticipates the death of a loved one, cognitive changes related to conditions like schizophrenia, or the progression of terminal or age-related illnesses such as Alzheimer’s disease. Anticipatory grief can also arise in non-death-related situations like divorce.
Grieving the Loss While Witnessing a Loved One Face Dementia
For those observing a family member navigate dementia, Elizabeth Edgerly, PhD, senior director of community programs and services at the Alzheimer’s Association, highlights that grief can become more intricate. Although the sudden loss of a loved one due to a heart attack, stroke, or accident is profoundly painful, Edgerly notes that watching a loved one deteriorate while battling a condition like Alzheimer’s presents a unique challenge.
The Complexity of Grief in the Face of Alzheimer’s
According to Edgerly, the grieving process commences when an individual receives a dementia diagnosis. As Edgerly explains, individuals begin to mourn the loss of future plans, such as aspirations to live in Europe for a year. She describes this experience as akin to enduring numerous small cuts, leading to a prolonged period of grief and loss.
The Emotional and Physical Journey of Grief
The imminent loss of a loved one impacts individuals in various ways. Moffa suggests that while full preparation is impossible, individuals can embrace the emotional, psychological, or physical challenges that may arise instead of avoiding them.
Moffa emphasizes the endurance required in dealing with grief, especially in anticipation of it. She advises taking care of one’s body by prioritizing physical rest, engaging in movement, getting fresh air, staying hydrated, and consuming nourishing foods, even if sleep is elusive.
It’s akin to enduring a series of small wounds, gradually experiencing grief and loss over an extended period.
Moffa stresses the importance of avoiding self-medication or emotional numbing through substances like alcohol or food to maintain overall health and resilience in facing the challenges of grief and its lead-up.
Understanding the Experience of Anticipatory Grief
According to the Alzheimer’s Caregiving Network, anticipatory grief manifests emotional symptoms that can be challenging to navigate.
It’s essential to recognize that anticipatory grief can also result in various physical symptoms. Moffa explains that grief impacts the entire body, leading to manifestations such as headaches, stomachaches, changes in appetite, disrupted sleep patterns, sexual issues, and more.
The Role of Communication
When a family member is experiencing dementia, it is important to maintain open communication, advises Moffa.
Expressing love, sharing memories, discussing future plans, having necessary conversations, and expressing emotions like fear or grief are beneficial for relationships, according to Moffa.
Engaging in honest conversations during difficult times is essential for both parties involved, as it allows for the expression of thoughts and emotions. Moffa emphasizes the importance of approaching such conversations with gentleness and sensitivity.
While communicating now won’t take away grief when the person is gone, it can help you feel like you haven’t left anything unsaid.
Communication patterns may vary and fluctuate with dementia progression. Edgerly suggests seizing moments when a loved one with dementia is able to communicate effectively, even if those moments are brief and intermittent.
Communicating with a Loved One with Alzheimer’s Disease: Strategies for Connection
During the early stages of Alzheimer’s disease, it is important to engage in open communication with your loved one. The Enlightened Mind suggests asking your loved one if they would like you to point out changes you witness as their condition progresses. Additionally, asking them about logistical decisions they want you to make and inquiring about how they are feeling can also be significant. According to Edgerly, discussing their experiences with someone they love, if possible, can be a meaningful and impactful experience.
Non-Verbal Communication in Advanced Stages
As the disease advances and verbal communication becomes challenging, The Enlightened Mind recommends exploring non-verbal ways of connecting with your loved one. This may involve activities such as giving them a hand massage or listening to music together. Maintaining a connection through non-verbal means can help alleviate the emotional distress of losing the ability to have deep, verbal conversations as you once did, as noted by Edgerly.
Coping Methods for Anticipatory Grief
Dealing with the forthcoming loss of a loved one can be emotionally challenging. The strategies outlined below could assist in managing this difficult time.
Become Informed about Alzheimer’s Disease
Preparing yourself emotionally for potential loss can be challenging, but according to Edgerly, gaining knowledge about the disease can be beneficial.
Understanding the progression of the disease is crucial. While the exact timing of changes may be uncertain, having an idea of what to expect can help you prepare mentally and emotionally for the challenges ahead. Edgerly emphasizes the importance of acknowledging, recognizing, and allowing yourself time and support to navigate the losses that may occur throughout the journey.
For example, in advanced stages of dementia, individuals may struggle to recognize loved ones. Being aware of this possibility can assist you in coming to terms with the harsh realities of the illness and grieving each phase and symptom as they arise. Edgerly highlights the significance of knowing what to anticipate and how to address these situations effectively in the moment to ensure the person living with dementia can lead a fulfilling life.
Murphey’s Coping Mechanism
Murphey seeks solace in educating herself about dementia and its potential impact on her father. With a professional background as a nurse practitioner, she considers herself fortunate to possess the necessary knowledge to comprehend this information and benefit from healthcare resources.
Personal Reflections
Expressing her proactive approach, Murphey shares, “I dedicate time to explore various resources and engage with online communities that offer valuable insights and suggestions related to dementia and the aging process.”
Expressing Emotions in Challenging Times
Dealing with a terminal illness diagnosis or observing a loved one’s gradual deterioration can be a source of anxiety. In such situations, Moffa emphasizes the importance of expressing your feelings. She recommends using methods like journaling or writing in a small notebook as therapeutic tools to help navigate through your emotions and experiences.
If finding the time to articulate your thoughts is a challenge, Moffa suggests setting aside 15 minutes each day to acknowledge and process your grief. According to Moffa, the key is not to suppress your emotions during this overwhelming period.
Seek Out Support
Finding support from others who are experiencing similar situations can aid in processing the experience. Seeking help from individuals outside your immediate family circle could be beneficial,” according to Edgerly.
Virtual communities and forums such as the free ALZConnected community by the Alzheimer’s Association provide a platform for connecting with individuals who can offer valuable insights. Engaging in online communities can alleviate feelings of isolation by realizing that others are facing similar challenges,” Edgerly explains.
Engaging in online communities can alleviate feelings of isolation by realizing that others are facing similar challenges.
Murphy’s Experience with Online Resources
Murphey appreciates the value of online resources and acknowledges her father’s exemplary approach to seeking support. She highlights his ability to adapt after the sudden loss of his wife by actively seeking out resources, engaging in bereavement groups, and broadening his social circle.
Finding Mental Health Support
If traditional support groups are not your preference, consider connecting with a mental health professional with expertise in dementia and anticipatory grief. Edgerly suggests being patient in finding the right match, being open to trying out different therapists, as it’s never too early to prioritize your mental well-being.
Find Healing at Your Own Pace
People acknowledge the reality of loss at different stages, which may not align with those of other family members. “Some individuals may only come to terms with it when faced with the imminent passing of a loved one because the magnitude of the loss is too overwhelming to comprehend earlier,” explains Moffa. “Grief is disorderly, awkward, and follows no straight path. It arrives when it does, and there is no rush towards finding solace or achieving ‘closure.'”
Preparing for the Future
Understanding the certainty of loss can lead to finding inner peace and resolution. For Murphey, the knowledge that her father is safe and content in his daily life brings her solace. She mentions, “We have taken all necessary steps to help him transition to a memory care facility where he can engage in various activities.” She adds, “We visit him regularly and bring his favorite strong Irish tea and coffee.”
Grief is complex, chaotic, and unpredictable. It follows its own timeline, and there is no need to hurry the process of finding peace or achieving ‘closure.’
Bottom Line
Grieving a loved one facing an age-related illness can evoke complex emotions. Understanding the condition, finding coping mechanisms for your feelings, and seeking support are essential to navigate through this process.
