April 10, 2024

Seems we can all relate to the powerful force of anticipation; it can portend excitement or dread, depending on our take on it, and how we fancy its arrival.  When I was little, excitedly mounting the carousel, a rush of dread soon overtook me as I anticipated the fact that soon the ride would be over. The focus inhibited the joy and magic of being present; it was what was going to happen that colored my experience. 

We are programmed to project outcomes even as we enter situations as the future looms steadily before us. Since we are hardwired for fight or flight in unknown, unfolding scenarios, we are naturally vigilant lest we be unprepared for outcome. Even more so when awareness reminds us that, ultimately, we are not in control of circumstances yet to be revealed. And the uncertainty of it all can be most troublesome. Projection becomes our "go to."

When it comes to caring for a dependent loved one in the throes of degenerating terminal illness, anticipation of loss and grief becomes a natural component of the journey.  As we naturally gravitate to beginnings; we find ourselves doing everything in our power to eliminate, or delay, endings. 

Anticipatory grief is a normal response to the sadness and uncertainty of impending loss or a pending change that may lead to loss. It is a feeling of grief prior to loss.  

It has a lot in common with conventional grief with the marked exception that conventional grief carries within it the sense of finality with loss; as with anticipatory grief, one is held in a kind of suspended animation anticipating the loss to come. It is a grief that can encompass an indeterminate length of time with mixed and contradicting emotions being held and experienced over a protracted amount of time. As someone so wisely stated recently, "it is death by a thousand cuts." 

On the positive side, unlike sudden loss, a loss that's anticipated can enable a positive preparation for the changes that will accompany the finality. Those witnessing death can work towards closure. However, research has also shown that anticipatory grief can be accompanied by more intensely felt anger, loss of emotional control, and atypical grief responses. In fact, a study of Swedish widows found that 4 out of 10 widows thought the pre-loss period of anticipatory grief was more stressful than the post-loss period of conventional grief.

Signs of anticipatory grief can additionally include emotional stress, irritability, withdrawal from social situations, depression, anxiety, an intense preoccupation with the affected loved one, wishing for a return of the loved one's personality before illness, loneliness, anger, a sense of helplessness - many of which can present in phases. The emotions and behaviors people experience when anticipating a loss can vary and will be felt with different levels of intensity.

Anticipatory grief is one way people react to the knowledge that a life-changing loss will happen in the foreseeable future. Although not everyone will experience anticipatory grief, for those who do, it's a normal response to the sadness and uncertainty that impending loss brings to both the present and the future. In addition to the anticipation of the loss of a loved one, the anticipated grief factor extends to projections of a vast number of losses: shared memories/experiences, intimacy, companionship, family roles /tasks, friendship, mentorship, joyful experiences and routines, dignity, independence, job, independence, hobbies, loss of future with shared memories, a way of life, and rearrangement of previous social connections. As one caregiver so sardonically declared: "I feel like a married widow." Yes. In essence, "we" becomes "me".

Anticipatory grief has been revealed to be significantly and independently associated with caregiver burden. In the case of anticipatory grief, when referred to as dementia grief, the aforementioned "death by a thousand cuts" pertains to the many losses leading to experiences of ambiguity. As changes in cognition and states of consciousness, along with losses of personality characteristics, an access to personal memories, and relational connections, the loved one may not appear to be the same person. While being psychologically inaccessible, yet, in terms of physicality, one remains consistently recognizable. The lack of clarity and resolution from ambiguous loss may be prolonged over many years. Due to this protracted state, it can be especially challenging to process difficult feelings related to loss, grief, and burden because final resolution of grief cannot typically occur until physical death.

SYMPTOMS OF GRIEF:

COGNITIVE:

• Forgetfulness
• Disorientation
• Difficulty with decision making
• Impaired judgement
• Difficulty with concentrating

EMOTIONAL: 

• Sadness
• Loneliness
• Anger
• Irritability
• Guilt
• Depression
• Anxiety
• Numbness

PHYSICAL:

• Sleep changes
• Eating changes
• Fatigue
• Body aches
• Agitation
• Susceptibility to respiratory infections

SUGGESTIONS FOR COPING:

• Allow feelings of grief to help you prepare end of life plans, settle legal/financial matters
• Educate yourself about what to expect in terms of prognosis, symptom treatments, potential side effects
• Connect with others for insight and support
• Enlist help to continue to live your life-DO NOT put your life on hold
• Create moments you and your loved one can enjoy (create new memories...take pictures)
• Accept that grief is normal
• Acknowledge and honor your losses
• Remember that anticipatory grief doesn't mean you're giving up...you can shift your energy from hope of recovery to focusing on being caring, supportive, and loving
• Keep communication  channels open, everyone does better when they understand one another
• Take care of yourself (make plans for now, and for after)

       from Psychology Today...John Manuel Andriote

"Manage your stress.  Be realistic.  Give yourself credit, not guilt.  Take a break, accept that there will be changes in your loved one's health status.  Know that you are not alone".

        Alzheimer's Association

"Make time for grieving, when possible, Don't go it alone, connect with your social support group, access respite or breaks, when possible, to cultivate joyful experiences.  Focus on joyful experiences with the loved one you are caring for,

journal/mindful meditation, nurture your spirituality, take time in nature, PRACTICE SELF COMPASSION."

        Alzheimer's Texas

Make plans and create/examine your bucket list....for present time, as well as the future. Determine to live not just for your loved one, but for the present and future self. And finally, next time you see a carousel, take a pocket of quarters and ride to your heart's content!

Karen Kelleher, M.A.

Family Caregiver Support Coordinator at DayBreak

Together, we can make a meaningful difference in the lives of

elders and family caregivers who selflessly support them.

DayBreak is committed to empowering elders and supporting caregivers.

If you know an older adult in need of our care and coordination services, or a family caregiver seeking assistance, please encourage them to reach out to us at:

510-834-8314