Anticipatory Grief
What is anticipatory grief? How can we grieve for a person who is still with us? Many caregivers experience anticipatory grief, a feeling of sadness and anxiety that occurs before a loved one passes away. I was not familiar with this term when I cared for my parents; having been prepared for anticipatory grief may have helped me process their end of life better.
Anticipatory grief can happen when a loved one is diagnosed with dementia, terminal cancer, or another lethal disease. We witness the diagnosis, then there are treatments that bring hope. Sometimes those treatments work for a time, and other times the disease returns with vengeance. As caregivers we participate in the day-to-day highs and lows, which can bring cycles of hope and despondency. No wonder our brains and emotions are in turmoil!
My Story
When my dad was diagnosed with dementia it began a long grieving process. Little by little, we witnessed him slip away into a shell of the diligent, story-telling guy everyone loved. He lived with the diagnosis of vascular dementia for six years, although his brain started deteriorating much earlier. He slowly lost the ability to manage money, do simple tasks like assembling a flashlight, and was eventually unable to drive. When he fell in his apartment, there was no turning back, he was confined to a nursing home for the next fourteen months until he passed away. His disability was so severe, no family member was able to care for him in a home setting.
Near the end of his life Dad was also diagnosed with Lewy body dementia, a devasting disease causing confusion, hallucinations, and severe motor problems. By the end of his life, they called Dad a “functional quadriplegic” meaning he was not physically paralyzed, but his brain would not work with his body so he could even lift a piece of bread into his mouth. I would often leave nursing home visits in tears, grieving for the dad he had been.
Helpful Ideas
Now I know I was experiencing anticipatory grief. Caregivers, my heart goes out to you if you find yourself grieving while your loved one is still alive. Anticipatory grief can be emotionally overwhelming; here are ideas that may help you as you walk this path.
- Acknowledge Your Feelings
Anticipatory grief comes with waves of emotions—sadness, anger, guilt, and even relief at times. Instead of suppressing the feelings, accept them as normal, which will help you process grief during the caregiving journey.
- Communicate and Connect
Connecting with others is essential to keeping your emotional balance. Share your thoughts with close friends, a therapist, or support groups. Have meaningful conversations with your loved one, and even if they cannot verbally communicate, you can still express love with gentle speech, touch, or visually.
- Stay Present
Instead of focusing on the impending loss, try to find moments of joy in the present. Engage in meaningful activities with your loved one, find ways to be positive, and make precious memories.
- Take Care of Yourself
This is often told to caregivers – and it is true. Grief is exhausting. Prioritizing sleep, eating healthily (with an occasional treat!) and even simple exercises like walking or stretching will help. Consider journaling, creating art, spiritual practices, or deep breathing as ways to manage your stress.
- Prepare, But Do not Obsess
Practical preparations, such as ensuring legal paperwork is in place, understanding their finances, and knowing the person’s end-of-life wishes can provide a sense of control. However, dwelling on the future excessively can heighten anxiety—balance planning with staying present.
- Find Meaning
Engage in activities that bring a sense of purpose—creating a memory book, writing letters, or supporting others going through similar experiences. Finding ways to honor the person can bring comfort.
- Seek Professional Support
A grief counselor or therapist can provide valuable guidance. Anticipatory grief can sometimes lead to depression or severe anxiety, so reaching out for help is a sign of strength. After my mom had died, and my dad was progressing with dementia, I spoke to my doctor about my mental health and began a course of anti-depressant medication.
Conclusion
Anticipate you may have anticipatory grief; it is part of life and the grief process. We cannot control when a person will pass on, but we can make the process a little better for us, and for the one we love.
Nancy R Poland, Grace’s Message
With grace and hope, Nancy Poland provides written and spoken communication on caregiving, loss, and other valuable topics. She owns what she calls a “micro-business” named “Grace’s Message,” however she has many years of experience in the business world.
In December 2022, Nancy retired from NMDP (previously National Marrow Donor Program/Be The Match) after nearly 28 years of employment. She most recently worked as a Contracts and Compliance Manager and spent over 18 years in management as a people-leader. Nancy has a Bachelor of Arts in social work and a Master of Arts in Health and Human Services Administration. She has authored two books on caregiving, issues a quarterly newsletter, and offers both in-person and virtual presentations.
A life-long resident of the Twin Cities in Minnesota, Nancy and her husband John raised two sons and continue to contribute to their communities, travel, and work on solving British detective shows.
As a working caregiver, Nancy encountered dilemmas such as the following, with no good choices.
- The phone rings, an ambulance is bringing her mom to the hospital (again). Does Nancy stay at work for the rest of the training session, or should she race to meet the ambulance and mom at the hospital?
- Dad is in the care home, in the later stages of dementia. The only day they schedule monthly family conferences is Thursday, no later than 2:30. Should Nancy take a half day off work, leave work and come back, or dial in, and miss out on a face-to-face conversation.
Working caregivers struggle with job obligations, caring for their loved one, and often other family responsibilities. The one they are caring for may be a child with special needs, an aging relative, or an unexpectedly injured spouse. None of us know when we will be called upon to care for another, and trying to balance each facet of life can be a recipe for disaster. When a caregiver has a crisis, it affects not only the ones involved, but also the company.
Studies show caregivers often have increased absenteeism or reduced performance while at work. They often need to cut down work hours or quit. As this is especially true for caregivers of older adults with significant care needs, for this talk I will focus on ways companies and caregivers can partner together to address the ever-increasing needs of caregivers for our aging population.
Website: https://nancyrpoland.com
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