Anticipatory grief kept me from falling hard

It is perhaps the only silver lining of the long goodbye of dementia--our grief has a long time to settle in, and sometimes it can cushion the blow of death when it comes.

The other day a dear friend who has known me a long time asked me how I was doing as I worked through my grief, now two-and-a-half months since my mother’s death. I had been telling her with enthusiasm about all my plans: to travel to Europe this summer to visit with my friends and my daughters, to walk the Camino de Santiago, the writing of a new novel that had me excited, and the prospect of dipping my toes into dating.

When she asked me that question about grief, it stopped me in my tracks. Where was my grief? It was as if I had misplaced something very valuable for which I was responsible, and its careless loss did not reflect well on me. My inner critic/ego, always ready to pounce and set me straight, jumped right in to tell me: There is a right way to grieve and you are clearly not doing it right.

I want to make clear that there wasn’t a touch of criticism in my friend’s question. She asked only out of concern. But in the next moment, I realized I did know why I have been able to pick up the pieces of my life in such relatively short order, to find joy and purpose and meaning, to look forward and not just remain stuck in my grief and in a past that had been deeply sad.

I have been in anticipatory grief, I told my friend. I have been grieving, in fact, for a very long time. Anticipatory grief had caught me in its embrace, softening the blow when it came.

The slow unraveling of dementia

I started mourning the loss of my mother with the first signs of dementia five years ago and with the official diagnosis a year later. And over the past three years, I had been experiencing grief during the slow, inexorable and painful unraveling of her beautiful mind: all that made my mother the intelligent, vivacious, funny, intuitive, thoughtful and passionate person she was.

All of those years and months and desperate days and hours of watching her lose more and more of her independence as her mind betrayed her, that is when the coming loss had me by the throat. I would help her undress, take out her dentures, pull her incontinence underwear over her frail legs. Oh, how she would have hated the indignity of it! But by then she didn’t seem to mind as I tended to her needs as she once did for me, always with a “thank you” that squeezed my heart. Then I would go to my room, lay on my bed and cry. Those were the times I grieved hard.

I was still gutted the day she died; of course I was. But I was prepared. I understood the day would come and in the few months leading up to April that day seemed imminent. A light had gone out of her eyes. It would reappear when she saw me. But as I left her room, she turned to the wall, turned away not just from me but from the world.

Anticipatory grief cushions the fall

And so when my friend asked that question, I understood that this, in a strange and twisted way, was the silver lining of dementia—anticipatory grief allowed me to be ready, to not fall to pieces as I once imagined I would, when I thought about losing my mother.

“The sharp edge of grief does smooth over time…today’s blunt ache is worlds apart from the first stabs,” writes essayist and poet Maria Popova in The Marginalian, a wonderful weekly digest of reflections spanning art, science, poetry, and philosophy.” She goes on to cite Abraham Lincoln who wrote in his stirring letter of consolation to a bereaved young woman, that grief becomes “a sad sweet feeling in your heart, of a purer and holier sort than you have known before.”

Substack writer Anne in

The Future Widow

, anticipating the death of her husband with a degenerative brain disease, writes eloquently about how she builds resilience including, like me, by finding healing in the ocean, because, as she writes: “those who are resilient have an easier time of grief than those who are not.”

Photo by 愚木混株 cdd20 on Unsplash

Surviving “dementia grief”

I know that I am not alone in experiencing the anticipatory grief that is specific to dementia caregivers. We begin to feel it when we anticipate how their dementia might develop, with every change and loss in our loved ones as their physical and mental abilities deteriorate.

In fact, there is a term called “dementia grief,” according to The Alzheimer’s Society, which is similar to anticipatory grief but specific to dementia, as it writes in this helpful guide for carers:

“For some carers, anticipatory grief can be even harder to deal with than the grief they feel after the person has died. For some people, anticipatory grief may lead to depression. It can help to talk about these feelings while you are still caring for the person with dementia.”

There were certainly days I experienced depression, as my mother’s live-in, mostly solo full-time caregiver until the final months of her life when she was in a memory care facility. But fortunately, I was well-resourced—with a broad support network of family, friends, coaches and tools and approaches I had acquired from a deep dive into strengthening my own self-awareness and resilience.

Those rich resources lifted me up, too, when I experienced the “real” grief after her death—the knowledge that there was nothing more I could to ease her pain or make her smile. I wouldn’t see that smile again or feel those arms around me, nor have one more conversation. That is the hardest part of grief. It is what I hear from anyone who has ever lost anyone they loved—the wish for one more day together, one more conversation, one more hug.

A Letter from Love and Mom on Lovability

I think of my mother every day. I hear her in my head talking to me. And when I hug myself, or one of her bears with their collection of Democratic political stickers and buttons, I feel her hug, too. Lately, she is joining Love—that inner voice of unconditional love—to write me a Letter from Love as part of the practice I do with

Letters From Love with Elizabeth Gilbert

.

Not long ago, she and Love had this to say about lovability. It was exactly the pep talk I could imagine my mother giving me. With every connection I make to her memory, it reminds me that these years of slow, sweet grieving were love, too.

Dear love, what would you have me know about lovability?

My little snow pea, shivering on the vine, trying so very hard to reach toward the sun so you will be seen, truly seen, and known and loved. So much striving. Dear one, you don't need to stretch and contort yourself so much to have that ray of sun shine upon you. That sun—which is our unconditional love—is always shining upon you. Let us remind you of all the ways that you are lovable. You are kind. You are generous. You have compassion and empathy. You are sensitive. You care deeply about the people you love and about all the loving hearts you witness here in Letters from Love and in the virtual world—human hearts you encounter every day and for which you have the gift of feeling and making connections.

Do you know how important all these qualities are, sweet girl? You spin around and around in circles, keeping yourself so very busy, thinking you must be somehow different, be something more, when simply being you is enough. It has always been enough.

Your mother taught you that.

And we will keep helping you to see that. We know you think your sensitivity is a quality that makes loving harder. Because when we are sensitive, we hurt. We hurt for ourselves. We hurt for others. But let us tell you, little monkey, swinging toward the sky, grabbing fistfuls of air, lovability isn't somewhere out there. It's right here. Yes, that's right. Hand over your heart. So darling butterfly, land on that flower, drink its nectar and stay awhile. Breathe deep and slow. Your lovability is not bound up in what you do. Your lovability is not diminished by the mistakes you believe you have made, the "failure" of your marriage, as you sometimes think of it.

There are no mistakes. No failures, dear one. Everything is a lesson. Every experience, every encounter, every relationship is an opportunity to deepen love. So dear heart, come to us as often as you need to. We will never tire of telling you this simple, most beautiful truth:

You are loved simply for being you.

Love,

Love & Mom

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Three Songs for 3-D

Divorce

“Old Love,” Dominique Fils-Aimé

When you thought all was over, it was just the beginning
The end of old love

Dementia

“Wild Leaves,” Patti Smith

Wild leaves are falling
Falling to the ground
Every leaf a moment
A light upon the crown

That we'll all be wearing
In a time unbound

Destiny

“Hold Your Own,” Kae Tempest

Thank you

Marielle Velander

for the recommendation of this incredible spoken word poet.

When time pulls lives apart
Hold your own

When everything is fluid, and when nothing can be known with any certainty
Hold your own

Hold it 'til you feel it there
As dark, and dense, and wet as earth
As vast, and bright, and sweet as air
When all there is
Is knowing that you feel what you are feeling
Hold your own