Roy Tindall – When a partner with dementia dies

I think there is a gap in the Social Care environment: that of caring for, or helping to alleviate the problems of, a carer who suddenly loses the person they have cared for. In some instances this is after years of caring when the very ‘raison d’être’ of their life has been the care of their loved one.

I came home from the hospital and it was as if everything had stopped. I rang all the statutory bodies that day to inform them and a hurriedly prepared list of everybody else that I felt was appropriate.

I heard nothing back. Nobody called. It is as if I was no longer of interest.

59 years of married life, five plus years of caring. My 24/7 job had just ceased with immediate effect. I had no other life, nothing. Never had I felt so low.

All that happened was that I received demand letters for repayment of relevant monies that had continued despite my phone call to let them know of her death. Whilst it is only right that repayment should be made, it was the manner of the demand that in my bereaved state I found so upsetting – even though it was they that had continued making the payments.

My one saving grace was that I had a voluntary ‘Befriender’ who helped me to manage my bereavement. She became my one source of support in those initial painful days and months. I cannot stress too highly how important a role she played at that time, but I now hear that funding for this invaluable service is being stopped. I consider myself lucky that my ‘befriender’ is going to continue to visit me when, even this long after my bereavement, her visit is still the highlight of my week.

There is an obvious need for every carer – when their life is changed so dramatically, and in my case so suddenly – to be offered a professional or voluntary befriender as a statutory right as part of the welfare system. The cost by comparison to overall welfare cost would be minimal but the benefit will be inestimable. The trauma of losing someone that I had cared for is far in excess of many traumas that in other circumstances would receive immediate and urgent professional care.

I was lucky. So many will not be; my heart goes out to those that are left, or will be left, with not only the pain of bereavement but having to rebuild a life on their own. I think I am a strong person, but I still needed help to get through this. Two years on, I now manage to get on my life and despite my physical health problems stay active and involved. Some of those who are bereaved will not be able to do this without an input from appropriate statutory or organised voluntary help.

I have read the Welsh Government’s Dementia Action Plan that has just been published and I am disappointed. Despite tide’s representations, carers are not featured as equal partners in care in the plan and the word ‘bereavement’ features only once; there is a huge unmet need that is for all professionals and support staff to recognise, not just specialist bereavement services. I was not inspired. Let’s hope those who are supposed to implement the plan will not file it away on the shelf or do only what the plan describes, but that they go the extra mile to provide proper support to carers and involve them as experts along the way.