I saw a post on social media this week calling for family carers to sign up for a research study on the subject of ‘Anticipatory Grief’. I was prompted to look further. It is Carer’s Week in the UK, so a blog about carers is timely.

The title of the study is: ‘The role of Age, Resilience and Perceived Burden on Anticipatory Grief for Dementia Caregivers’ and the researcher is Masters degree student, Jane Gilsenan, who is studying at Ulster University. More information can be found here.

Whilst the term ‘burden’ is discouraged when we think about appropriate language to describe living with dementia, there can be no doubt about the importance of this subject.

The State relies heavily on family carers to provide care for people living with dementia. In 2014, the Alzheimer’s Society valued ‘informal’ care for people living with dementia at £11 billion per year. A report produced by Carers UK in 2015 (based on research carried out by the University of Sheffield) suggested that the collective contribution of people who provide unpaid care for a disabled, seriously-ill or older relative, amounts to £132 billion a year. It’s clear that the social care system would collapse if everyone who needed care, demanded it, and yet carers still face discrimination and hardship through lack of support.

Suzy Webster, who, along with her lovely family, cares for her mother, who was diagnosed with dementia at a young age, tweeted:

So, there is a strong imperative to explore issues of resilience and grief. How can we enable family carers to stay strong and remain healthy? How can the services help carers more effectively? What is it that they need, what provides the most help?

My experience in the dementia field tells me that these are complex questions. Families come in many shapes and sizes, all have strengths and capabilities, and all have vulnerabilities. A family centred approach is needed, with a focus on how relationships change and how carers can be supported to maintain their identity, re-define their sense of purpose and create a future for themselves.

Carers Week this year is about building communities that support the health and wellbeing of carers. “Caring can be a hugely rewarding experience, but sometimes carers find it challenging to take care of their own well-being whilst caring. The impact of caring on health and well-being should not be underestimated”. The Carers week website provides a platform for sharing examples of approaches and services that help carers to stay Healthy and Connected. 

‘Anticipatory Grief’ is an important subject. I was talking to a friend last weekend whose husband (with Alzheimer’s and cancer) is reaching the end of his life. He has recently moved into a nursing home. My friend described to me how she felt the day before, she said “I couldn’t move, I just couldn’t get out of bed. It felt like my veins and my arteries were full of cement”. This is grief. How do you cope with the anticipation of death, the progressive feeling of losing connection, the diminishment of a relationship that was once powerful and strong and equal?

I was keen to write a blog about grief this week. It’s five years almost to the day since my husband died. He didn’t have dementia, but caring for him, and losing him to a life-limiting condition, has changed me forever. The grief gets no easier, but the experience has enriched me. Everything I do is more thoughtful and considered. I value everyday life - the simplest of things - so very much more than I did before our journey began.

My friend speaks eloquently about what she has gained from being a carer. In our conversation at the weekend, she described the last five years as being ‘bitter-sweet beautiful turmoil’. Life really is very amazing.

If you have experiences of grief that you would like to share (in confidence) please contact me askbarbara@unforgettable.org