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After the death of her mother Shirley at the end of last year, dementia carer Linda Harman shares her feelings on the highs and lows of the experience, and what she sees her role as now

‘I never dreamt that the death of my mother, who suffered from vascular dementia and a progressive form of aphasia, would affect me as much as it has.

‘For five years, I was her primary carer, learning at the point of crisis about dementia; what it is, why people with dementia behave the way they do, what help we could call on, how little we were entitled to, what, if anything, I could do. For the first year, Mum stayed in her own home, living alone after the death of my father, but supported by me, every day after work and before looking after my own family. For the two years following that she came to live with our family and for the last two years of her life she lived in local residential care.

‘Looking back, it feels as though I have just exited a rollercoaster! There were as many “up” moments, as “down”. People I meet often find this difficult to comprehend, particularly as dementia is such a feared disease. But Mum and I managed to maintain our bond despite her dementia and lack of language.

We had some lovely close moments. I was always thrilled when I managed to demonstrate or explain something well enough that she could share an experience; such as when we went to see the bluebells last Spring and Mum didn’t stop beaming the whole time. And the time that I used an autumn leaf to explain that Winter was coming and Mum looked at me and said “Christmas” so clearly.

Seeing the way she held onto the hand rail on the promenade at the beach and breathed in the sea air. How she loved the fresh air! And the time I was helping her into my car for our weekly outing and she felt momentarily insecure and said “Hey-up!” in a Yorkshire accent that made us both laugh as she hadn’t lived there for decades.

‘Naturally I miss the daughter-mother bond. I do not miss the pressure to be her carer, the constant conflict between her needs and those of other family members, the fatigue from hardly having any moments to actually relax myself and the guilt if I went away, even if it was business related.

‘Whilst carers should never assume that they can ever fully understand the experiences of the person living with dementia, I certainly feel that the comment from Chris Robert’s daughter that “When someone gets dementia, the whole family gets it” is absolutely spot-on. I have not lived with dementia, but our family has lived alongside dementia and I truly thought that when my mother and I reached the end of her journey, I would feel sad about her absence, but relieved that the caring was over.

‘But I do not feel relieved at all. Like many former carers, I carry guilt and Mum has left a very large hole in my life that I have yet to fill. It is a hole that used to be taken with the responsibility for another and now leaves me feeling somewhat lost, and wondering what to do next. One of the differences between dementia and other terminal diseases is the level of decision making that must be assumed by the carer. Some of these are simple decisions, some financial, some about medical care. Most are taken jointly with experts. I fought to maintain my mother’s freedom because she hated to be cooped up indoors, as is often the way in residential care.

‘So, when I could no longer cope with her needs, I saw part of my contribution as being her conduit to outdoors. We went into the gardens for walks or to take tea on nice days. We visited the beach, the bluebells and the local garden centres on a Sunday afternoon. But I didn’t notice that she was becoming unstable and suddenly, one day, she had a catastrophic fall. It was my decision to take her out that day, so the guilt is mine, despite the fact that I know that Mum loved those outings and would probably have given up on living a lot sooner without them.

‘Many people have said, trying to be sensitive, that I must be relieved. I am not. I am sad. I re-live the last moments and wish it could have been different. I know I am grieving. I just didn’t expect to do it now, because I have been doing precisely that for the last five years!

‘I have discovered that my feelings are very common among former carers. The large and growing number of people affected by dementia explodes if you count all the people in their families that live alongside dementia. We are an army – will someone please let me know how to become a battalion leader? Former dementia carers have a contribution to make to the current debates about how to cope with dementia and how to help the thousands of family carers. That can be our role once the caring is over.’

Does Linda’s blog strike a chord with you? Let us know how you cope in the comments box below.