A blog written by Fiona McMahon, Carer Involvement Lead in Northern Ireland Recently I was asked to comment on text for a booklet about telling someone with dementia that someone they know has died. My first reaction was how deeply sad it is that this is what we are focusing on in this time. My second reaction was how vital the lived experience of carers is to this kind of guidance. This experience got me thinking about loss. On top of all that carers managed every day, before COVID19, there is yet more to deal with. Before this carers were dealing with living grief and continual loss. Now it feels like carers are experiencing more loss in some way or another in this crisis:

• Some are experiencing the loss of any identity outside of their caring role due to furlough and have the time to consider their roles;
• others are experiencing the loss of support with the withdrawal of services, lack of respite and increased caring responsibilities;
• many have lost the support from family and friends due to shielding and lockdown;
• the loss of physical contact with the person they love living in residential care. People may feel they are losing their connection faster than before;
• there is also the loss of control about how care is delivered, who does it, when it happens and what you know about it;
• many are living with anticipatory loss – the fear of what may come;
• there are also carers grieving the physical death of the person they cared for without the usual ritual and communal recognition.

It also seems that we are all ‘holding’ onto our loss. At the moment, we can’t put it down anywhere, we can’t process it and, often, we can’t share it. We’ve all been lockdown and ‘holding’ so much. In the meantime – I am really sorry for your loss, whatever form it may take. To provide a way for carers to connect with each other tide are running regular zoom coffee and chats. We also provide information on a whole range of carer related issues, including health and wellbeing and loss, grief and bereavement.

The booklet mentioned is ‘Supporting a person with dementia with bereavement during the COVID19 pandemic’: Northern Ireland Hospice Palliative Care academy and Northern Health and Social Care Trust. For more information contact: Joanne Ballentine joanne.ballentine@nihospice.org or Frances.Duffy@northrentrust.hscni.net

For more information on tide's work in Northern Ireland, please contact Fiona on fiona@lifestorynetwork.org.uk