Patti Pilat Buono

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Anticipatory grief was a subject that surprised me!

I do a lot of reading and research for these blogs. I try to read a combination of first-hand accounts and scientific research. Often I come across vocabulary and topics that I am unfamiliar with—especially when we talk about the pharmaceuticals available to help our loved ones.

After doing The Job for over a decade and a half, I like to think I’ve gathered a tremendous amount of information first-hand, through my experiences. When I consider everything I have been through with my parents, I recognize that I have been spared a number of illnesses, complications, surgeries and problems. It weighs on my mind, thinking about the variety of miseries that might be occurring in the homes of my readers—the things I can’t speak to from a personal perspective that you might need support with.

For the most part, however, everything I find in my research is something I’ve heard of or considered. Even though I haven’t had to deal with any lung or breathing diseases with my parents, for example, I am familiar with those maladies, and can speak to supports you might need to help them through these problems.

So I was surprised to find something completely new to me. I’m almost embarrassed that I haven’t heard of it, or written about it, in the year I’ve been doing my blog. I’ve even suffered from it without giving it a name! It is so very common, and such an important topic, that I am devoting two blogs to it:

Anticipatory grief

Definition And Meaning

We all know that people get old and die. That type of death is expected, and is really how we envision the process: One day 100 year-old Granma just won’t wake up. It will be peaceful, restful, filled with bittersweet loss and relief as they smoothly and calmly transition from saying “I love you, my child” to closing their eyes for the last time.

Yeah…maybe in Hollywood.

The truth is much more sad, much more messy, and often quite a bit longer than the concept of just “not waking up” tomorrow.

And we think about that ugly process. We sometimes obsess over it, and when we aren’t romanticizing it, we are dreading it with every fiber of our being.

That is Anticipatory Grief

“It might be the hardest part of caregiving — watching your loved one slip away step by terrible step, knowing you can’t stop the decline and grieving the loss, long before they’re actually gone.” (Ref 3) That exactly explains what is meant by advanced, or anticipatory grief. We are watching this snowball travel downhill at a varying rate of speed. It isn’t fast and smooth, but often a slow, stagnating, rushing, overwhelming period of time that we can’t predict. For most of us, once that snowball hits high gear, we hope for a quick ending. But we can’t control it—the dying process doesn’t bend to our whims.

Speaking specifically to those of us suffering through Alzheimer’s and Dementia, the period of anticipatory grief can be very long, and quite painful on a daily basis. “When someone has a disease, injury, or condition that permanently changes their personality, like Alzheimer’s, the grief may come as it sinks in that your loved one, as you knew them, will be “gone” even before they’re gone.” (Ref 2) That quote speaks volumes to me, because pieces of Mom are already gone, despite the fact that her death is likely years away still. It is, for those of us living with dementia, a slow, painful chipping away of the person they used to be. It is never knowing what you will walk into from one moment to the next, and it is personality changes you never could have predicted or imagined.

The moment I changed….

My Mom actually hit a nurse. My Mom. Hit somebody. It was a sobering moment for me that yet another part of her personality was permanently altered.

Based on this quiet and insidious change in Mom’s personality, I find myself always “on guard” against what I will be facing. Never knowing what mood or personality I will face when I see her, I now find that I have to stop at the door, take a deep breath, and kind of steel myself so I am not shocked or disappointed. That is a form of anticipatory grief: “It’s the experience of knowing that a change is coming, and starting to experience bereavement in the face of that,” (Ref 4). Shorthand: I’m in a constant state of grieving.

And it sucks.

I’m In “Anticipatory Grief”

Let’s go back to 2016. Pop had survived—and thrived—through multiple cancers, A-fib, and the removal of a kidney. Looking back, I absolutely did not have any anticipatory grief during all of these trials and tribulations. My always positive, half-full personality kept me going and strong through every doctor’s appointment and chemo appointment. I pretty much talked myself out of the reality that Pop was in a constant state of decline…hiding it exceptionally well.

When Pop declined, it was a nine-day event. I came home on a Friday, and he told me he was done with doctors and medicine. I called Hospice on Saturday, and they reluctantly took on his case, telling me he’s nowhere near the end. Six days later Pop told me “I think it’s close, Pat”, and two days later he just passed quietly in his sleep while I sat in the room reading.

I had nine days to come to terms with his inevitable death.

I’m betting some of my readers can relate when I tell you I just never envisioned a world in which Pop could be dead. All of my time was spent keeping him comfortable and vibrant and active, with absolutely no time spent living in the reality of his impending death. No doubt about it—I wasn’t prepared mentally and emotionally. I didn’t allow myself to entertain the possibility, probably thinking if I didn’t consider it, it can’t possibly happen. We are all children when it comes to our parents.

So I spent all of nine days in the stark reality of his death. And I suffered. All of the stages of anticipatory grief were happening at warp speed, with all of the common symptoms hitting me in the face with brutal reality, sometimes two or more per day. It was a very difficult nine days of activity, with me trying to continue my caregiving jobs with both parents, while preparing my own kids for the impending loss of a beloved grandfather and coordinating travel for my siblings trying to get here while there was still time. I cried desperate tears in bed every night, while Sweet Husband sat with me, stone-faced and strong so I could—finally—fall apart.

In those nine days, I relived all of the medical issues we had overcome with Pop. I spent time talking about the never-ending chemo appointments, and how many times we walked the floor trying to build up Pop’s strength after the kidney. I talked about my childhood, and our first trip to Disney World. While unloading 50 years of memories in nine days to Sweet Husband, bitterly realizing I hadn’t appreciated Pop as I should have, and there were so many things I hadn’t said yet.

I realize now that I was “grieving forward”

“Think of conventional grief as ‘grieving backward’ —mourning a loss that has already happened. Anticipatory grief is forward-looking. We’re grieving what we still believe we might lose,” (Ref 4) I finally saw the writing on the wall that Pop was dying, and I was trying to envision a live where I didn’t have a father, wasn’t a primary caregiver, didn’t have the advice and wisdom of the smartest man I’d ever known. I was a mess for those nine days.

Now I’m living with dementia. Even worse, I’m living through dementia with a 92 year-old woman with absolutely, positively NOTHING physically wrong with her. No Meds. No specialists. Completely, totally healthy. Just a future of not knowing who I am…or who she is. I’m in year three of anticipatory grief, with several in front of me.

Jump in, the water is fine.

Are you, too?

I have freely admitted above that I did not confront Pop’s impending death until it was literally days away. This time around, I’ve embraced my reality with both hands, and feel like I am bravely confronting all of the wretchedness and misery that is long-term severe dementia in my Mom. But, that pesky positive attitude sometimes gets in my way…“This leaves space for hope, however unrealistic, that the loss may not occur. Anticipatory grievers might find themselves ‘hanging on to possibilities’ in ways that may not be helpful,” (Ref 4).

I am sooooo right there right now.

Every time Mom recognizes someone, or makes a connection with her past, or even just recognizes a movie on TV, I feel a little flutter in my heart and I smile a little too wide. This isn’t’ good for me—and I know it. It isn’t good for you, either, and we both need to face the fact that this snowball is getting larger and faster, no matter how hard we try to stop it.

As you continue to read, and start to recognize the stages, and the various common symptoms of anticipatory grief, be careful not to become sad. Recognizing these signs is going to help you manage your feelings, manage your expectations, and overall help you to face these inevitabilities with a calm and sure demeanor. You’re still going to cry, become frustrated and rage against God or medicine, but you will come back to center more quickly because you will have faced the fact that things are, in fact, progressing to their natural end.

BE CAREFUL

Be careful not to confuse anticipatory grief with depression. While both can be immobilizing and last for an extended period of time, anticipatory grief is significantly more focused, therefore making it something that can be experienced and overcome. “While some people might think of this as a type of depression, it’s really a distinct form of grieving. And it’s also a natural, expected response to caring for someone with a long-term or incurable illness.” (Ref 2) Frankly, you’ve earned your anticipatory grief, and should go through the stages with pride.

This very specific form of misery and torture can feel unique to those of us who do The Job, and we’ve earned the right to overcome this pain. Take your time, and trust yourself to come out the other side. We will be fine.

Common Times This Happens

As much as we feel alone, unseen and unappreciated sometimes, those of us doing The Job are not the only ones who can suffer through anticipatory grief. While caring for someone with a degenerative disease and providing end of life care tops the list, there are in fact multiple situations and life experiences that can cause anticipatory grief. I offer you this list (from Ref 4) in an effort for you to recognize the signs in someone else you love, so that you can help them through the process:

Caring for others with chronic diseases
Hereditary conditions that may occur (cancer, for example)
Waiting for an organ transplant
Facing amputation or significant change of physicality or lifestyle

Another interesting element of anticipatory grief is that it can be quite specific and different based upon the age of the patient. A younger person (25 or so) being diagnosed with cancer would experience more anticipatory grief than a senior citizen receiving the same diagnosis. This is probably due to the expected life expectancies of both patients.

The Takeaways

Your takeaways from this week hopefully includes an understanding of anticipatory grief, and the part it is playing in your life as the caregiver for someone facing end of life decisions. Additionally, I hope you can better recognize this as a temporary position, from which we can recover and rise above so that we can help the other people we love. In my example, it was Sweet Husband who cared for our children as Pop lay dying—I was deeply sunk into anticipatory grief during those nine days—because in retrospect I was a hot mess.

Come back next week for more information about anticipatory grief, including the symptoms you need to watch for, the stages you will go through, how long it can last, and whether or not it minimizes post-death grief.

In the meantime, be kind to yourself. You’re going through a lot right now.

eldercare home preparations
anticipatory grief

THANK YOU FOR READING THE FAR!!!

Wow! You made it! Thank you for reading about anticipatory grief!

Hey, since you’re here! You may as well check out fall prevention, here, or read about Black Friday for the elderly, here! Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! Any dementia stories? Let me know!

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Anticipatory Grief - A Surprising Discovery - Part 1