Navigating Preparatory & Anticipatory Grief

I’m pleased to share this special #MetsMonday featured post by Linda Catanzaro Boberg and her daughter Meg Boberg. They share how their lives have been impacted by preparatory and anticipatory grief and how they cope with the ongoing challenges this kind of grief brings.

Dealing with preparatory and anticipatory grief is hard. Writing and reading about grief — any kind — isn’t easy either. If this discussion isn’t for you right now, I get it. Still, talking about hard stuff matters. So, I encourage you to read to the end.

Are preparatory grief and anticipatory grief the same?

A quick Google search might lead you to think they are, but they are not the same. While they overlap, the difference is that preparatory grief is experienced by the person who is facing a life-limiting illness.

At the end of Meg’s section, there’s a farewell worksheet the two completed in which they tackled some tough questions. It had to be rough for them to fill that out, but they did it! I’m including it because it’s an exercise any of us might choose to utilize when dealing with preparatory and/or anticipatory grief. It’s even an exercise you could do after a loved one has died — a writing prompt for grief processing.

Thank you for sharing about such personal things, Linda and Meg.

Readers, be sure to share a comment or ask a question at the end of the post.

A Mother’s Preparatory Grief

by Linda Catanzaro Boberg

Before I go further, I need to state that I am not a medical person. I urge anyone who is sad, troubled, worried, not sleeping or eating, snapping out at others, or who just wants an objective view to get a therapist! Doesn’t matter what they call what you are going through. See someone.

I had never heard of preparatory grief until my daughter Meg explained it to me. She tells me that I am in the midst of this – oh, joy! Another side effect of having metastatic breast cancer.

Then, she explained that she is in anticipatory grief, waiting for her mother to eventually die. We both know that there is no cure for stage 4 breast cancer, only a small hill of drugs that may help, but eventually stop working while the cancer finds other places to wreak havoc within my traitorous body.

Meg works for an online marketing company, primarily writing about health issues. I retired two years ago after getting my stage 4 diagnosis hoping to alleviate one of the stresses in my life which was my work. Stress can also help the death process along.

I was so angry when I got that Stage 4 diagnosis.

I had hoped and prayed I would be one of the Breast Cancer Havers who would not have a recurrence or be diagnosed as stage 4. But my traitorous body had other ideas. I had lost fifty pounds, eaten well, denied myself any liquor. I established a fun routine with my daughter of going shopping for plants, eating breakfast out, going to HomeGoods. If I felt great, I declared the day No Rules Linda Day and spent way too much money. I was living my life and felt great!

My preparatory grief started on April 17, 2019, the day of my official stage 4 diagnosis. At the time, I did not know what it was.

My mind was overrun with these horrible thoughts:

• That I would never get to see other milestones in my children’s lives (because, while I am not a young mother, I still worry about my adult babies).
• I would never get to see my only granddaughter grow up or meet any siblings she might have.
• That I was torturing my husband when I felt so badly that I stayed in bed all day, or took my anger out on him by yelling at him.
• I worried that even taking a much-needed nap was taking away time I could be living. I’m an extravert! I need people more than I do drug-induced naps.
• And, most of all, I worried about what my health crisis was doing to my daughter.

It was Easter weekend right after my new oncologist gave me the bad news that I decided to tell my sons Dan and Patrick and daughter-in-law Marieta while I visited them in Iowa. It was all I could do not to openly weep when I told them and when I played with my granddaughter Emmalyn. I was extremely angry with God and although I went with Dave and his ninety-five-year-old mother to Mass, there was no solace there. Doesn’t help that my MIL is fairly healthy. When I am in the throes of preparatory grief, I tell her son that his mother will probably outlive me.

Even when I went shopping with my daughter-in-law Marieta at my favorite retail store, I was upset, mad, angry. At one point, I even told her that I wasn’t sure if I should keep fighting. After all, Stage 4 Havers rarely escape death. I know there’s a statistic for people who make it to a ‘normal’ deathtime. But I figured that would not be my luck.

Marieta straightened her spine, got a defiant look in her eyes and said, “Fight, Linda. Fight hard.”

I needed that. Me, a person who considers herself very resilient, trying everything I can to continue my life, was suddenly caving in?

No!

After that visit and a side trip to see my sisters, I had Meg pick me up at the airport, figuring the hour ride home was a good time to tell her what was going on. I know that she probably knows more than I do about breast cancer because she writes about it constantly. As I told her, she tightened her face, but asked me pertinent questions. I figured that she had taken it well.

Ha.

Her grief burst through in several ways just days after we talked.

None of this helped me. I was super down and things seemed truly hopeless.

Depression, right?

I thought so. I have just enough training as a college student counselor to know that I was hurting. Usually, when I get very depressed, I find the will to climb out of that pit. It didn’t seem to work here.

So, I got a therapist, and it was my good fortune (maybe not hers) that she has treated others with my problems. I wasn’t looking for that when I asked for her help, but I got what I needed – a person who is not afraid to make me confront myself, my own issues, and can cry with me when I need it.

After several sessions, I reached a point where I wasn’t grumpy all day long, or thinking hopeless thoughts constantly. An example is that recently I had my engagement ring cleaned and I love, love, love the sparkle of the forty-five-year-old ring. Later, it dawned on me that I did not look at that pretty ring and think that someone else would inherit it way too early which is what I would think when preparatory grief looms large.

I can go to festivals with my granddaughters and be thankful for those wonderful days. When my children visit us – which is often – I am amazed that they like their father and I enough to make us a huge part of their lives. I can spend four days in Vegas with Meg and thoroughly enjoy our time together.

But I also recognize that preparatory grief sneaks into my life and makes me do desperate things. I am searching for ways to make my children remember me. I bought Meg a beautiful tanzanite pendant, thinking that this small item will always make her think of me. Because face it: plants die; precious stones do not.

I gave my daughter-in-law four Christmas mugs that I’ve had for years because she told me she likes them. I’ve also willed all my Christmas Village pieces to her because she shares that interest with me, and they don’t make the Chicago pieces that I own anymore.

I am using a program called Storyworth that sends a weekly writing prompt about my parents, grandparents, and my childhood. Eventually, I will print it. This year I’m doing an auditory program called Spoken Biography.

Just try and forget me!

That, for me, is preparatory grief.

I have dark days when I cannot rid my thoughts of what physical problems lie ahead, or about what I will miss. But if I’m able to tap my resilient side, I can find something sparkling in every day.

But I know Meg suffers, especially if I have problems. I don’t want to hide things from her; I save that for my mother-in-law who at 96 asks at every opportunity, “You doin’ okay?”

Thankfully, today I am.

Read Linda’s other terrific #MetsMonday pieces:

Death Wishes

The Daily Struggle with Fear

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A Daughter’s Anticipatory Grief

by Meg Boberg

Expecting my parent’s death is something I never thought would happen to me, much less at the age of 36. Oh sure, I figured my parents would pass before I did, but it’s much different when a death stares you in the face and it’s constantly on your mind.

My mother was diagnosed with stage 4 breast cancer in the spring of 2019. Even though I knew the cancer she had in 2014 could come back, I never truly dwelled on that fact. I remember she told me the oncologist gave it a 65% chance of metastasizing, but I subconsciously pushed those feelings away so I wouldn’t have to deal with them.

Now, I no longer have that ability to cloak myself in denial. I am in unfamiliar territory: anticipatory grief, a term I hadn’t learned until I was Google searching the feelings I was experiencing.

Read more here.

Feelings like:

• How do I cope when I know in advance that my mom has an incurable, terminal illness?
• Wondering how much quality time I have left with her to enjoy before things take a downward turn.
• Worrying about how I will cope with these feelings before, during, and after she passes away.
• And figuring out how to communicate with someone who is still alive while I’m already grieving without making her feel bad, too.

One of the “good” things about knowing your loved one will die imminently is that you can say a meaningful goodbye. Wrap up loose ends. Tell them how important they were in your life. I know that children whose parents die suddenly do not have this luxury, and I don’t take this for granted. Still, it’s difficult to broach the subject with my mom or sit down to communicate those feelings. It breaks my heart to convey them, so I know it must be just as challenging for her to cope with preparatory grief.

Through no fault of her own, I must endure this horrendous anticipatory grief. I feel like it’s irrational even to be thinking like this, but I do get quite intense emotions and feel the need to vent that my mother’s health woes of the past 10 years (the first bout with cancer, osteoporosis, fall injuries, brain tumor, stroke, and now metastatic cancer) have been difficult for me to watch and endure emotionally.

On the subject of saying goodbye:

My therapist gave me writing prompts to share with my mom, or to share with anyone to whom you must say your permanent farewell. I’ve had these sitting for over a year, but only now am I getting around to putting my thoughts down.

I know my mom was dreading having to talk about this, but I want you to know, mom, it’s just as difficult for me to write them down. But you need to know so I can be at peace. Because we’re both writers, I think it’s easier for me to riff on this subject through writing it rather than reading it aloud, which I’m not sure I could handle.

Here goes…

Farewell Worksheet (Meg’s Responses)

I am saying goodbye because your body, as you call it, is a traitor. There is nothing fair about cancer, and sometimes life deals you an unfriendly hand. I never thought this would be part of your story, or by default, mine.

Saying goodbye makes me feel overwhelmed. Frequently, I feel overwhelmed when I ponder the imminent loss, especially because I don’t know how much time we have left.

I remember a time that we sat down and I “wrote” my first story with you. At the time, I was about 3 years old and I couldn’t even read, yet. But I told you the story, you wrote it down, and I drew the pictures. We kept doing that until I was able to lift a pen to paper and do it on my own.

I will miss this about you: How we had so much fun going out on weekend mornings. We’d go to breakfast, visit gardening centers to look at (and buy too many) plants, and then get our nails done. Nobody could fill your place with those fun tasks.

I will not miss this about you: All the overwhelming feelings I’ve gone through because of your up-and-down health over the past 10 years. It makes me feel awful saying that, but it has been very difficult for me, too.

Thank you for giving me the gift of the written word. Without your knowledge and support guiding me, I likely never would have pursued a career in writing.

You taught me how to garden. I never thought I’d be interested in plants, but it is now my passion and favorite hobby.

You should thank me for getting you hooked on watching figure skating competitions.

Please forgive me for putting you through so many frustrating times as a teenager and my occasional snippy behavior to this day. I’m working on it.

Please forgive me for all the times I made you cry and feel frustrated because of my emotional ups and downs.

I forgive you for making me, through no fault of your own, endure this horrendous anticipatory grief. I feel like it’s irrational even to be thinking that, but I do get quite intense emotions and feel the need to vent that your health woes have been difficult for me to watch and endure.

This is something you should know: I am determined that my grief after you’re gone will not consume me. I will find ways to carry on without you. For sure, it will be hard and I’ll have horrible days or weeks, but I also know you wouldn’t want me to spiral and not be able to cope, so I will do my best for your sake.

I will always remember the good times we spent together. For example, I’ll always remember how we’d go out every weekend for breakfast, go to the gardening center, and then get our nails done. That was the best!

I love you.

BIO: Meg is a professional writer at an internet marketing company where she creates website content for healthcare systems and hospitals. She has a background in journalism and speaks Spanish and Italian (mostly) fluently and is learning French. For stress relief, Meg enjoys gardening, traveling, and her menagerie of pets: 2 cats, 7 fish tanks, and a rotating batch of foster kittens. Meg welcomes messages sent to her Instagram handle, @megboberg.

Farewell Worksheet – (Linda’s responses)

I am saying goodbye, but not because I want to. It’s being forced on me. At the same time, I recognize that children bury their parents. You just have to do this earlier than most. You will get through it. I buried two parents and a sister well before I wanted to and I’m okay with that.

Saying goodbye makes me feel incredibly sad. Angry, too. This should not have happened this way.

I remember each time I wrote down your stories and how I hid them when you went through a rough period where you were throwing treasured things away. I still have them. But I have the better memory. Remember all the horse shows? Some where you got so mad at me, others where we shared in your wins (like Stony Ridge). Our trip to Vegas – that was the best trip WE ever had. No fighting, no grousing, and doing whatever we wanted because it was No Rules Linda Week(end).

I will miss this about you: Actually, I don’t think you’re supposed to miss people when you die. But right now, I feel like I will miss everything about you. Your amazing writing. You are so talented. Your ability to research the deepest things about health (and not share all of them with me, I’m sure). Going shopping with you (on the days you wanted to really shop) and coming home with too many flowers, plants, or clothes.

I will not miss this about you: Again, I don’t think the dead who have hopefully made it to heaven, miss things, but in case we do here goes. I will not miss constantly worrying about you. You have no idea how many nights and days I worried about how you were, or if you were going to hurt yourself. You know, after Italy, I lost all trust in you. I know it’s just a result of your disease, but it is exhausting. Some nights I tell Dad, “You have to worry about her tonight because I need to sleep.”

I want to thank you for helping me learn about mental health. Seriously, I probably would not have researched it, gotten into NAMI, or helped teach it if I didn’t have to learn all I could to help you.

I want to thank you for encouraging my writing through your writing. My mother always loved to write. She used to say that she wrote a little, I wrote more, and someday one of her ancestors would publish. She had no idea how that challenged me, and I always take up a challenge.

You taught me how to be more open to the Woke World. My job also did this, but when I didn’t understand things in the LGBTQ world, or mental illness, or whatever world, I knew I could turn to you for answers. I know I’ve got a long way to go to being totally aware, but you never made me feel stupid when I asked a question.

You should thank me for always standing up for you when I had those No Rules Linda Days and bought too much and had to face your father. Those were sometimes hard.

Please forgive me for the times when you were in junior high and I screamed “I want the nice Megan back! What happened to her?” as we drove through that stupid tunnel going into Ada.

Please forgive me for the times I did not listen to you, including during my Timmified times. I’m sure you thought you’d lost your mother then, but I was really and truly out of it. I’m sorry.

Please forgive me for putting you through this horrible anticipatory grief shit. I wonder what’s worse? Knowing it’s going to eventually come like I do or knowing like you do that it’s going to hurt like hell once I die.

I forgive you for keeping me awake more nights than were healthy, for sniping at me when you were younger. These times were caused by disease, not because you were being deliberately mean to me. I don’t think you could plan to be mean.

This is something you should know: I am really hoping that somehow, I will be there for you. I have felt my mother at times when I really, really needed her. I can even say that I know when she left me on my own after Timmy the Tumor was removed, probably because she thought I could handle it. I’m really hoping that this is something that happens when I die. We, of course, don’t know about life after death, but one can dream. Since I have felt several deceased family members’ presences, my hope is that you will feel me when you need me. I hope that when you look at something I gave you, you will look at it and know that I love you. (And not blubber like I am doing right now!)

I hope I will get to remember the good times – the horse showing, watching you during lessons, and yes, breakfasts out and then shopping. And Vegas! I will not forget the Bellagio, Lagos, or the fountain!

I love you more.

Thank you, Linda and Meg, for talking about preparatory and anticipatory grief; thank you for talking about the hard stuff.

Linda’s BIO:

Linda Catanzaro Boberg was diagnosed with Stage 3 Pleomorphic Lobular Carcinoma, ER positive, PR positive (weakly), Her-2 Neu Negative. She is still looking for an easier way to explain her cancer. In 2019, she was diagnosed with Stage 4 metastatic breast cancer. Before retiring, she was a counselor to international college students for ten years. She and her beloved husband and entire family shiver in Des Moines, Iowa. For her second act in life, she is writing romance tales of resilience under the pen name Adelyn Zara. The fifth book, Fine, Just Fine, launches in late January and is about an elderly woman who chooses not to have any medical intervention when her breast cancer returns because she just wants to see her husband (who she lost over sixty years before). Find out more at Adelyn Zara, and visit her on Facebook, Instagram or Twitter.

Have you experienced anticipatory grief?

Are you experiencing preparatory grief?

What is something you would tell a loved one if you were filling out a farewell worksheet?

Do you have a question or comment for Linda or Meg?