Anticipatory Grief

I positively surprised myself.

Recently, I mentioned the topic of anticipatory grief, and I felt it was important – for myself, and perhaps for others – that it be addressed more fully. Wikipedia defines it as follows:

“Anticipatory grief, also known as preparatory grief, refers to a feeling of grief occurring before an impending loss. Typically, the impending loss is the death of someone close due to illness. This can be experienced by dying individuals themselves, and can also be felt due to non-death-related losses like a pending divorce, company downsizing, or war.”

It also turns out to be a much‑contested concept. Research is limited, and there is real debate about its positive and negative effects. The negative side seems obvious to me. The positive case rests on evidence suggesting that anticipatory grief may reduce the intensity or duration of bereavement for carers and loved ones after death. Intuitively, that makes sense – but scientifically, it remains far from settled. I’ll leave that question for another day.

Feeling curious about the topic – and wanting a brief pause from a creative burst of energy the day before (poetry, quotes, articles) – I went looking for the science behind it. What I found was a structured scale: 27 questions developed by researchers in the 1990s, designed to measure grief in caregivers of people with dementia. I paid £29 for 24‑hour access to the paper and adapted the questions from a caregiver’s perspective to that of a patient.

I then worked through all 27 questions myself, simply to see where I landed.

Rather than dwelling on every item (full list and source at the end), what struck me most were the questions on which I landed with a relatively positive outcome – and what that might mean. These stood out:

• I don’t daydream about how my life was before my diagnosis was made.
• I do feel close to the people I love despite my illness.
• I have discovered new personal resources since my illness was diagnosed.
• I don’t feel it is unfair that I have this illness.
• I do feel more competent in some ways since my diagnosis.
• I am able to accept the fact that I have this diagnosis.

I want to be clear about what that means – and what it doesn’t.

It doesn’t mean I’m unaware of what’s coming, or that I’m not frightened by it. It doesn’t mean the nights are always easy, or that PSP isn’t doing what PSP does. But on the specific questions the scale asks, I found myself often landing in one of the least‑distressed brackets. That felt worth noting – if only to myself, but perhaps also to others.

Because I think it says something not just about me, but about what might be possible.

Looking at those answers, it seems I’ve done a few things rather well:

• I chose an awesome soulmate and we built a strong family, which continues to support me.
• I’ve learned to accept, and even find meaning and purpose in, my diagnosis, while not liking it one bit.
• I’ve leaned into my faith – not to feel anger at the diagnosis, and not to consider it unfair, but to accept it as part of G‑d’s choosing.
• I’ve learned (rather – “I’m learning”) that looking too far back or too far forward isn’t something to dwell on. While that pull is natural and normal, I’m trying to live more in today than in yesterday or tomorrow.

On these questions, there’s no doubt that my faith, my family, and – if I’m honest – the fact that I worked hard to build financial security from almost nothing, has given me a significant head start. But I’ve also developed on top of that foundation. My scores around anger, hindsight, and anticipation were very different near the time of diagnosis. Over time, I’ve learned to accept – and, more importantly, I’ve found meaning through writing, and what I suppose is a second career: negative economically, but off‑the‑scale positive in terms of purpose.

Where I did less well

Three items gave me pause, and I want to be honest about them. It wouldn’t be fair to present only the flattering picture.

Irritability. Yes. I have my moments – usually in the afternoon or evening, when I’m running on empty. Those around me feel it. I feel guilty about it, and then I try to do better the next day. It isn’t my finest feature.

There is, however, a practical insight here. I realised while completing the scale that this irritability, in its current form, is relatively new. It followed a recent change in medication after a visit to the psychiatrist following a suspected TIA. I gradually came off an anti‑anxiety drug that carried a stroke risk and replaced it with another. As a result, I feel significantly more anxious – something my wife and I are addressing together. That alone made the exercise worthwhile.

Sleep. Not great either – but I’ve spoken about that many times before, so I won’t labour the point here.

Guilt. The third issue is all in the question itself. The caregiver version asks: “Do I blame myself for my relative’s illness?” Reversed for a patient, this could mean either “Do I blame myself?” or “Do I grieve the impact of my illness on others?”

To the first interpretation, the answer is no – I don’t blame myself. To the second, the answer is unequivocally yes. I feel deep upset, grief, and pain for the impact my illness has had on those around me and the way it has changed their lives.

It’s always in the question.

So, on anticipatory grief, I suppose I’m doing okay. The one area where I feel most weighed down is the guilt I carry for the effect on those I love.

The question of benefit

Is there benefit in anticipatory grief? It’s a question worth sitting with. Intuitively, it makes sense to me. I hope that any grief my loved one’s experience in anticipation of what PSP will bring does, in time, ease the weight of bereavement afterward. Otherwise, the grief simply doubles – or lingers somewhere between the two – and I would hate for them to carry that burden twice over.

As a patient, the pain I feel is almost entirely for the pain I see reflected in the eyes of those who care for me.

And perhaps even the term anticipatory grief is beside the point. That may be why it attracts so many definitions. In my experience, this is not grief for a hypothetical future – it is grief for a very real present. It is simply grief. And, all things considered, I think I’m dealing with it reasonably well.

I return again and again to Viktor Frankl, who survived three concentration camps and wrote that the last of human freedoms is the ability to choose one’s attitude in any given set of circumstances. In its quiet, clinical way, the Anticipatory Grief Scale seems to echo that idea. Attitude, it turns out, is partly measurable.

And this week, at least, mine measured reasonably well.

I’ll take that – with appropriate modesty.

And now, back to some poetry – my newfound part‑time activity. Stay tuned.

27 Questions I used based on the research I bought a copy of – note that ★= Marked Items are positively worded. A score of 5 means low grief, not high.