​Understanding Grieving and Guilt

When we hear the word ‘grief’ we often think of death, but did you know we can also grieve for change?
If you're caring for someone with a dementia, you've likely experienced grief not just once, but many times over — in waves, in quiet moments, and in the unexpected.

Dementia can bring with it lots of changes; changes to the person you’re caring for, changes to your daily routine and lifestyle, changes in your relationship, and you may feel grief for these changes even though the person you are caring for might be sitting right next to you.

Alongside grief, many carers carry another heavy emotion: guilt. Understanding these complex feelings can help ease the emotional load and remind you that you're not alone, and that everything you’re feeling is very common.
 
What is Grief?
The word “grief” comes from the French verb grever — meaning to burden or weigh down and that’s exactly what grief can feel like: a weight on your chest, in your body, or in your thoughts. It’s messy. It doesn’t follow a straight path. It isn’t linear. It often comes in waves, triggered by small or big changes. It is unique to everyone, and at one time or another, we will all grieve for loss or change.

For carers, grief often starts long before a loved one passes. You may grieve for:

• The loss of shared memories
• Changing roles and relationships
• Watching the person you’re caring for change
• Seeing your role change from partner to carer
• The life you imagined for them, and for you
  
  

This kind of grief is called anticipatory grief. It’s valid, it’s normal, and it deserves and needs space to be felt.

The Grief Journey: It’s Not a Straight Line
You might be familiar with one of the most famous grief models developed by Elisabeth Kubler-Ross. In this model there are five stages of grief — denial, anger, bargaining, despair, and acceptance. Kubler-Ross suggests that each stage needs ‘completion’ before someone can move to the next stage, but that’s it’s possible and, in fact, likely to move back and forth between them.

For carers, there’s often an added stage: resignation. This can happen when the ongoing changes feel relentless, or when it becomes hard to keep facing the same challenges every day.

Remember - these stages aren’t linear. You can move back and forth between them. Some days might feel peaceful; others might bring frustration or sorrow — sometimes all at once. Grief takes a unique path for everyone, and it’s important to understand that you can’t go around grief. You can’t avoid it. You must go through it.

Grief can affect both the person living with a dementia and those who care for them. The person with a dementia may lose the ability to understand losses and grief but may still have a generalised feeling that something is wrong.

Denial
For carers, denial can be a protective shield — a way to avoid pain or postpone difficult decisions. But over time, denial can isolate you from support and leave you feeling stuck or overwhelmed.

Guilt: The Secret Grief
Guilt often hides in the background. It whispers:

• “I should be doing more.”
• “Why do I feel angry or resentful?”
• “Did I say the right thing?”
• “I shouldn't feel like this.”
  
  

Guilt and grief are closely linked — but they serve different emotional purposes. Grief is a process that, in time, can lead to acceptance. Guilt, especially unhealthy guilt, can keep you stuck.

Healthy guilt helps us reflect and make amends when needed.
Unhealthy guilt stems from unrealistic expectations — like thinking you should be superhuman.

You are not superhuman. You are a human doing your best in very difficult circumstances.

Moving Toward Acceptance
Acceptance doesn’t mean you’re “okay” with everything. It means:

• You’ve stopped fighting what you can’t change.
• You’re making space to live in the present moment with your new reality
• You’re ready to seek support — and allow joy and laughter back in
  
  

As Maslow said:
“I can feel guilt about the past, apprehension about the future, but only in the present can I act.” Acceptance opens the door to better support for both you and the person you care for.

How to Cope and Heal
It’s important to acknowledge that your grief will always be a part of your life and you can honour the grief by finding the right space for it. It might look different over time, and your life around the grief will inevitably look different. Whatever path your grief takes and however it looks for you, remember that everything you’re feeling is a completely normal and healthy reaction to change or loss. We must go through grief. We cannot run or hide from it. Going through it is the only way to make it out the other side of the forest.

• Talk it out – Join groups, create a network, or speak consider speaking to a counsellor.
• Name your guilt – Recognise when it’s helpful and when it’s just a weight.
• Get informed – Understanding dementia helps reduce fear and confusion.
• Ask for help – You don’t have to do this alone.

At places like Parklands Dementia Resource Centre and Alzheimer Café Isle of Wight, carers and families find connection, information, and support. Whether it’s a quiet cup of tea, a shared story, or just a place to be heard — you are welcome.

Remember - you are not failing. You’re feeling. And you’re not alone.

Find us: Parklands Dementia Resource Centre, Park Road, Cowes, PO31 7LZ
Call us: 01983 220200 
Email us: [email protected] 
For information about our cafés across the Island email: [email protected]