Anticipatory Grief – it is real and I feel its effects

Anticipatory grief is a known and natural phenomenon. It affects caregivers, family, friends, and loved ones of people with terminal or progressive illnesses. It has been studied extensively, especially in cancer care and palliative or hospice environments.

But I’m also discovering that I feel it as the patient. This is a voice not too often heard especially with PSP, so I wanted to address it. I think it is an important contribution for many people, and many patients are unable to express what maybe similar feelings themselves.

Before reflecting on that, I wanted to look at some data, so I spent an evening doing some research.

I purchased access to a research study called “Family Caregivers’ Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges.” The sample size was small – 26 caregivers of cancer patients in palliative care in Portugal – but the findings are striking. The categories the researchers identified are meaningful and deeply resonant. I made this chart highlighting the results of what specific feelings people had.

Below is an explanation of each of the categories and it paints a picture many will be familiar with

Traumatic Distress

• Uncertainty of illness: The unpredictable course of disease creates constant fear of the unknown.
• Image of degradation: Rapid physical and functional decline can be shocking, even surreal, for caregivers to witness.
• Vicarious suffering: Seeing a loved one in pain causes intense shared emotional suffering.
• Caregiver impotence: A profound sense of powerlessness in the face of unstoppable decline.
• Life disruption: Caregiving consumes personal resources, halts normal life, and leads to isolation and fatigue.

Separation Distress

• Death anticipation: A painful awareness of impending loss – mixed with a desire for suffering to end.
• Relational losses: Gradual erosion of companionship, shared plans, familiar roles, and mutual support.
• Separation anxiety: Fear of future loneliness or of being apart from the patient.
• Sense of protection: The instinct to shield the patient, avoid painful conversations, or make difficult decisions.
• Affective deprivation: When the patient’s illness reduces their ability to show affection, leaving caregivers emotionally unfulfilled.

Emotional Regulation and Dysregulation

• Regulation efforts: Trying to cope by suppressing emotions, distracting themselves, or using self‑reassurance.
• Symptoms of disorganization: Mood swings, anxiety, intrusive thoughts, physical tension, and emotional overwhelm.

Although the study focused on cancer, anticipatory grief shows up across illnesses. A 2012 article – “Grief Reactions in Dementia Carers: A Systematic Review” – reported anticipatory grief rates between 47–71%, with complicated grief after death is estimated at around 20%.

I know I am well beyond that 20%, and given my life expectancy and the intensity of my recent decline, it feels important to articulate two things:

1. Anticipatory grief is real, natural, and understandable as shown above.
2. It has a significant impact not only on caregivers, but also on patients.

My Patient Experience – How does it feel knowing people have ‘Anticipatory Grief’ to greater or lesser extents?

Whether I like it or not, this is happening. And it isn’t purely negative. The fact that there are people who feel this deeply about my decline means I must have done something right in life. The research also points out that it may benefit the caregiver in reducing the degree to which they suffer afterwards – although it doesn’t appear from the research 1-2-1. I want my loved ones to move on whenever I lose my fight with PSP.

But nonetheless, it is emotionally hard. For the following reasons.

I grieve too – differently. I grieve for my lost future, for the person I will not get to become. I also carry a tremendous, irrational guilt for causing pain to the people I love.

I see grief in their eyes, even when they try to hide it. I respect it and empathize with it. But I also see and feel distancing – people stepping back in various ways. And I understand that too. Some people step forward as is their nature and that has been a huge help, and I appreciate it so much but for many it is too hard and it may also only be subconscious, but I feel it, nonetheless.

There are many reasons:

• People need space to cope with the impact of my illness. In some ways, their emotional burden is no less – and sometimes more – than mine.
• They have their own lives, their own futures, loves, responsibilities, and joys. I want their lives to continue, and it actually calms my feelings of guilt.
• There is a distortion effect: for some, my illness threatens to overshadow their own challenges, which are no less important just because mine are more visible. I personally don’t accept this – everyone has their issues and honestly mine don’t dwarf others – they’re just different.
• People don’t know what to say anymore. We’re long past pretending this isn’t happening. It clearly is.

All of this creates a strange, lonely emotional landscape and leaves me feeling more alone than I thought I would feel but also keen to often be alone to minimize the guilt and the impact I have on others. I often hesitate to voice my feelings because I don’t want to add to the weight others are already carrying. Why should I pile my struggles onto friends and family who are already coping with so much?

Being the patient is brutally hard – but being the spouse, the partner, the family member, or the close friend carries its own pain, it is a different burden, and it is real and heavy.

Finding Attitude and Balance

I keep returning to the Churchill quote: “When you’re going through hell, keep going.”

I can’t turn back. I can’t abandon the resilience and faith I’ve built over the years. I have to double down on it. The only option is to keep adapting and keep moving. Ignoring ‘Anticipatory Guilt’ doesn’t really help anyone.

Balance matters too. Relationships rely on communication, compromise, and empathy.
I will do my best to understand how hard and overwhelming this is for others.
And I hope others can understand that I don’t want to be abandoned – not now. Making it a topic on the table I think helps open this channel.

I am absolutely not looking for heroics or dramatic responses, but it is ok to feel grief, but it is also ok to feel relaxed about being in touch.

I have a big family celebration coming up in a few weeks. It’s at the centre of my mind. I want to be there. I want to participate fully. And I am looking forward to seeing people there.

So, I will keep searching for humour – often dark humour – in this absurd situation, and I will continue trying to live as fully as I can, for as long as I can.

Caregivers and Patients experience different emotions throughout the process – empathy is the key and I hope I have helped not hindered with this blog post.