Patti Pilat Buono

What You're About To Read

Welcome to Part Two of Anticipatory Grief. If you need to catch up, Part One was published on December 2, 2022, and covers the explanation of what anticipatory grief is, how to recognize it, and the importance of it through the process of slowly and surely losing someone to a degenerative illness. Those of us who are caregiving for someone with a debilitating mental disease can go through this process for years, as we watch our loved one decline. In Part One, I identify the very short stint of anticipatory grief I had with my father, and how terrible that was—to go through so many stages and phases in such a short period of time.

Whether you live in anticipatory guilt for a long time or quite quickly, it’s a nightmare I don’t wish on anybody. But, here we are, you and me, stuck in the middle of it.

Let’s learn more about this condition:

Common Symptoms

Reference 4 had a great, comprehensive list of the common symptoms you might feel when suffering from anticipatory grief. Boy, is it a depressing list! It starts with anger or irritability, and ends with tearfulness. In between those two, you’ve got some real winners like denial, desperation, lack of motivation and sadness. All of those make complete sense to me, and things I have absolutely dealt with over the past three years caring for Mom. I can pretty much brush all of those off as “expected” or “normal” reactions to doing The Job.

But the list goes on…

“Withdrawal from social situations”, “Intense preoccupation with the dying period” and “Loneliness” caught my eye right away, because these are symptoms that I have absolutely had from time to time, and they are the worst!!! There is nothing worse I can do for myself than isolation—not letting the people who love and care for me participate in my life is the worst form of torture. Nothing will make you feel more lonely and isolated than cutting yourself off from loved ones who only have your best interests in mind. Those are the most frightening symptoms, and the ones that are the most likely to linger and grow into larger problems.

So, I’ve got a handle on all of these symptoms at this point. I’m facing my demons and working every day to not let them control my narrative. I’m in the clear, right? Not so fast… “Although you realize you’re experiencing anticipatory grief, you may not understand its power.” (Ref 1). Make sure you don’t minimize just how powerful anticipatory grief can be! Some of the things highlighted in this article included the fact that “time can grind you down”, and that “suspense and fear are a part of your life” (Ref 1). Considered from that perspective, it is easy to feel helpless and unsure in the face of such a strong opponent. It is definitely a constant fight.

How Long Can It Last?

Looking at the four phases of anticipatory grief (Ref 4), it is important to remember that you can be in each stage for an extended period, or suffer through more than one stage at once. For me, with Pop, in nine days I went through the entire gamut, but with Mom I’m in year three and still in stage two! Your mileage will absolutely vary based on your individual situation:

Death is inevitable – This is the acceptance phase after the diagnosis, when you truly recognize that the snowball has left the cliff. Feelings of sadness and depression highlight this step
Concern for the dying person – This is the phase where regret rears its ugly head, trying to make you feel worse about what you did or did not do. This is the time when you make amends as best you can, while conversations can still occur. For the dying person, this stage usually includes fear of death itself. This is where I am—making sure I leave nothing unsaid and no hurt feelings.
Rehearsing the death – Every so often I’m here, like a few weeks ago when I tried to convince Big Bro Bill to say his last goodbyes when he visited. Yesterday I visited Pop in the cemetery and imagined sitting there with both names on the tombstone. It’s a bleak period.
Imagining the future – This acceptance of the inevitable causes us to look towards a future they aren’t a part of. Whether that is events they will miss—like Sweet Stevie’s wedding last month—or holidays where we will have that one empty seat staring us in the face. The dying person might be imagining what the afterlife might really be.

Will It Alleviate Post-Death Grief?

I’ve got good news and bad news…sometimes anticipatory grief helps. But not always: “Some experts say anticipatory grief, when managed with coping techniques, can lessen the pain of post-loss grief. Others argue grief before loss has no effect on grief after loss.” (Ref 4)

I can tell you absolutely, without question, having those nine days of anticipatory grief with Pop made it easier for me overall. Once the inevitable happened, and he closed his eyes for the last time, I was able to coordinate things, greet people and lead a service that he would have loved and been proud of. That isn’t to say I didn’t cry, reminisce, wish it hadn’t happened, but I absolutely was at peace with the entire process. I hope that is what happens in your case, because it was the best possible scenario for me and my family.

Mom…well, that’s a different ballgame. What will I feel when the snowball finally slams into the ground at the bottom of this very high mountain? I have no idea. I like to think it will be as seamless and comfortable as it was with Pop—no regrets and a pure joy that she is no longer in pain or confusion. But, like you, caregiving for a patient with dementia has consumed my life—been a second full-time job really—for several years now. How will I react to not having those responsibilities anymore? How will I fill the void that is considering her needs and care requirements on a daily basis? It’s going to be quite different.

Nobody Understands Me…

Going back over a year, I started this blog because I couldn’t find good, first-hand resources online for people caring for loved ones. Doing this has brought me in touch with hundreds of other caregivers around the world, which has been spectacular.

Because, before, I felt that nobody understood what I was going through. Maybe you feel the same way right now. It is extremely important that we caregivers practice self-care and self-love at every opportunity, and try to understand the myriad emotions we are facing. To work through your anticipatory grief, consider the following (Ref 3):

Allow feelings of grief to help you to prepare
Build a community of caregivers you can talk to about feeling anticipatory grief
Continue to live your life
Create moments your family members can enjoy and look back on

All of these things have been recommended to you through my blog, and I hope you are making it a priority for you to care for yourself, and the other members of your family. After your caregiving shift is truly over, you will still have those people who have loved and supported you through it all, so it is important for you to continue nurturing those relationships.

Finally, “It’s OK to cry or admit that you’re angry or frustrated.

These are helpful ways to keep pent up emotions from turning into resentment toward the person you care for or from taking a toll on your health.” (Ref 2) My biggest concern with doing The Job long-term was that I would become angry and resentful of Mom for taking so much of my time and energy.

I’m very proud of the fact that I recognized when I was at my limit, and found additional care options for her so that I could continue my life and my career. When she fell, I was able to get her full-time help in our home so she could be comfortable and continue the lifestyle she was accustomed to. When things became untenable for me, I found a suitable place for her to live, where I can continue to participate in her life on a daily basis, but not have the 24/7 stress and fears of having her in my home.

It hasn’t diminished my anticipatory grief, though, having her out of the house. I’ve learned the only thing that really helps me overcome all of the negative emotions I struggle with is knowledge. Finding and reading a wide variety of sources of information helps me understand how I am feeling, and anticipate what my next steps will be. Sharing all of this information with you is also quite therapeutic for me, as well, in helping me overcome the sadness and despair of watching Mom slowly slipping away.

More than anything else, my positive attitude has been the very best weapon I have had to keep all of the negativity and misery at bay. I know what’s coming, but by facing it head on, with my team on my side, I am absolutely positive I will come out on the other side stronger and happier for having lived through it.

Trust me. After all, I’m quite optimistic.

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about anticipatory grief! Make sure you go back and read part 1, here!

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!

Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.

Anticipatory Grief - The Long Game - Part 2