Hello, Caregiver friend. I’m back with the second tip in this series. This tip is focused on recognizing and figuring out what to do about anticipatory grief in healthy ways while continuing to care for your loved one. Anticipatory grief can cause many of the energy-sucking emotions discussed in the first installment of this series: Caregiver Guilt (click here to read about Tip #1).
“Anticipatory grief is defined as grief that occurs before death or loss. You may be grieving several losses, not just one.”
–Lynne Eldridge, MD, What Is Anticipatory Grief? (Updated 2023)
As family caregivers, we know there are good and bad days, and learning to focus on the good ones may not be easy, but it’s worth the effort, and I’m here to help. I want to help you manage this sometimes overwhelming caregiver journey so that you can keep smiling along the way.
Over the next couple of posts in this series, we’ll explore tips three and four in the list below, but for now, let’s look at tip number two, caregiving with anticipatory grief.
Four tips for caregivers
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- Don’t let caregiver guilt over things you can’t change weigh you down. It is a waste of your precious energy.
- Identify anticipatory grief and take steps to relieve it in healthy ways.
- Practice caregiver self-care: Prevent overwhelming fatigue by taking good care of yourself first.
- Don’t forget that 𝐬𝐩𝐫𝐢𝐧𝐠 𝐚𝐥𝐰𝐚𝐲𝐬 𝐟𝐨𝐥𝐥𝐨𝐰𝐬 𝐰𝐢𝐧𝐭𝐞𝐫, so be ready to enjoy it.
What is Anticipatory Grief?
Photo by Nathan Dumlao on Unsplash
You might think my person is living. Why are we talking about grief? That comes later, right? According to Harriet Hodgson in her article, Be Aware of Anticipatory Grief (2015), the following symptoms are telltale signs of anticipatory grief:
- Your thoughts jump around from past, to present, to future.
- Every day is a day of uncompleted loss.
- You are constantly stressed because you don’t know when the end will come.
- Days are filled with suspense and f ear. Will this be the day my loved one dies?
- Anticipatory grief puts limits on your life.
- Fear is tempered with hope. You hope a miracle drug or surgical procedure will save your loved one.
- You are constantly waiting for the endpoint.
If you are a long-term caregiver like me, by now, you may be experiencing anticipatory grief. While caregiving, we grieve the loss of the loved one we are caring for every day, the job we had to give up for them, for the life we didn’t get to live, lost time with other family and friends we can never get back. It’s not only the anticipated loss of your care recipient, but loss (or the perceived loss) in other areas of your life that are forever changed because of your caregiving experience.
“Grief does not wait for death to happen; it occurs both in anticipation of and following a loss. Extended illness, disability, severe accidental injury, a terminal diagnosis or the aging and decline of an elderly family member can produce what is known as anticipatory grief and mourning. We find ourselves reacting and continually adapting not only to an expected loss, but to all the losses – past, present, and future – that are encountered in that experience.
What to Do About Anticipatory Grief?
Photo by Nathan Dumlao on Unsplash
First, recognize that anticipatory grief is a real thing. It’s not uncommon, and you are not immune, so take some time to process it. Then, recognize that you still have time with your loved one. These days are a gift, so make the most of them together.
On the other hand, I know you’re tired (for sure), but you may also be sad, angry, and maybe even afraid of what comes next in you caregiving journey. You could sit and wait in that funk, or based on your knowledge of the situation and with input from your care recipient (if possible) and their doctor/medical team, you could try to “anticipate” what may be coming and plan ahead.
- You must maintain your self-care (emotional, spiritual, physical, mental)
- Get a caregiver coach. Check with your local Area Agency on Aging. This organization is nationwide and a great resource. Perhaps yours, like mine, has coaches on staff.
- Stay connected with friends and family.
- Get a counselor/therapist if you need one.
- Try to work with your family or a coach to help determine the next steps.
- For me, having a “go-to” scripture memorized helped A LOT!
Here’s one of mine: “for God gave us a spirit not of fear but of power and love and self-control.” 2 Timothy 1:7 (ESV)
Where do I start?
Here are just a few areas to consider while planning:
- Is it time for hospice/palliative care
- Insurance coverage
- Is it time for assisted living, and covering the cost
- Would moving your loved one into your home make caring for them easier
- What are the associated changes
- Should we plan a funeral in advance
- Sell a house
- Bring on extra help
- Wait and watch
- How will I maintain my health while caregiving
Change is okay
Life isn’t static, and your plan shouldn’t be either. Situations change, and when they do, it’s okay to make updates.
Photo by Claudia van Zyl on Unsplash
You’ll be less stressed if you remain flexible. For me, planning didn’t always go smoothly, but with the help of a caregiver coach (from AAA), it did help me manage my emotions and provide a sense of calm. I was no longer flailing in the wind, but instead walking forward with a plan, although holding it loosely.
I understand that we’re all dealing with different situations, and the tips I offer may not work for everyone. But, please, know that I offer them because I understand what it’s like to be a long-term family caregiver. I know how it can beat you up and mess with your head. My prayer is that you might be encouraged and find some benefit from my experience as a family caregiver. Please let me know in the comments, and feel free to share some of your experience, too. After all, we’re in this together.
