For the first time ever, and goodness knows why, when the name of the care home flashed up on my phone, I didn’t have my usual panic. But when Abdul said that the paramedics were there and that he was going to try to get a priest, the tone of his voice told me that we’d moved into a different space.
We’d come to call summonses to the home when my husband David appeared to be close to death, ‘Lazarus episodes’, and we’d had four or so of them over the past 3 years. The most recent had been only 12 weeks ago and we all, my daughter Robyn, son Joby, and David’s brother Paul had hurried there and sat by the bed until it looked like the crisis had passed. Indeed it did pass and David had recovered, albeit even more lacking in capacity than he had been before this had happened.
After at least 17 years of living with young onset dementia – vascular and posterior cortical atrophy variants – David was now unable to do anything and it was not apparent that he had much consciousness of himself or of anyone else in the world. He’d certainly not registered any awareness when his newborn granddaughters had been brought to see him 35 and 11 months previously. Nor had there been any visible signs of understanding when we’d told him that, God willing, there was going to be a grandson in early June.
In the midst of the Covid19 epidemic I was relieved when Abdul said we could go to be with David at this time, so I quickly got myself together and set out in the car on the hour and a half trip to the home. I phoned Robyn and she said she was on her way. We all agreed that it was too risky for Joby, whose first child was due to be born in the next month, to come.
Arriving at the home at around 11.15 I was met by two members of staff who dressed me up in a plastic apron, gloves, mask and a visor. The paramedics met me outside David’s room, told me that a Covid19 test had been taken and sent off, that it was by no means clear that he had the virus, and warned me that his body was discolouring from sepsis.
David and I had been together, through good times and bad, for the best part of 51 years, since I was 15 and he was 22. Walking into that room, knowing that he was dying, and that these were going to be the last hours we would spend together felt very scary, very significant, and almost overwhelmingly sad.
The first thing I noticed was that David’s ears were dark maroon. His feet were black and there were maroon streaks and patches over his head and face and on his arms. His breathing was fast, he was burning up, but he didn’t appear to be fully conscious.
I spoke to him, telling him I’d missed him because I’d not been allowed to visit, filling him in with quotidian news, chatting away as I had for the last few years, no longer troubled by the lack of response. The paramedics called me out for some questions and whilst I was talking to them Robyn arrived, all kitted up in the gear.
Robyn is a psychiatrist, not long back at work on a geriatric dementia ward following maternity leave, so what she found was not alien to her. There is, of course, an obvious difference when the dying person is your dad. She also had a good idea of what could happen over the next hours, which I did not. She did her own observations, spoke with the doctor when he came, and checked out how we would deal with pain medication as the district nurse had to come in to administer it. We then settled down to be there for the duration.
Being together was wonderful because we hadn’t been able to see each other since March 22nd. Every day there’d been lots of Whatsapping, video and telephone calls and thank goodness for technology but it isn’t the same, so in the midst of this profoundly sad situation we took joy from our proximity. We chatted to each other and to David whose hand we held. Robyn took on responsibility for alerting the staff when she felt the nurse needed to come to give medication. Although the nurse was not on the premises she always arrived within 10 minutes of the call. The care home staff looked after us, bringing sandwiches, crisps, pop, coffee and cake at regular intervals.
David had been moved to this specialist dementia home, quite a long way from where we lived, just over 3 years ago. At that time the nature of his condition meant that the place where he had been for a few years could no longer meet his needs nor accommodate him in a way that ensured the safety of other residents. We had had no choice but to agree to the move, even though it meant that my car was constantly needing services because of the miles I was driving to visit him. However we quickly discovered that we had struck lucky because the standard of care David began receiving was superb. Following a fall and a broken hip which he wasn’t expected to survive, he was nursed back to health, although he was no longer independently mobile. We decided to leave him there, miles away, because we doubted we would find anywhere comparable and we also felt that the upheaval would do him no good.
The day passed. We chatted, read magazines, watched a bit of telly, the vicar arrived and said some prayers. At 9 Abdul’s shift ended and he came in to say good night. He knew this might be the last time he saw David and he kissed him on the forehead through his mask. Over the years we had all benefitted from Abdul’s love and concern. He would send me pictures and even did WhatsApp videos so that I could see David during Covid visiting restrictions. We were so blessed that, having had to entrust David to others when we could no longer keep him safe and look after him as he needed to be looked after, he ended up amongst such wonderful and committed friends.
Around 11.45 Robyn discerned that David was becoming agitated so she called for the nurse who duly came and said that, in the morning, they would get a driver set up. We were tired. Robyn lay down on the crash mat by the bed and I stretched across a couple of chairs. We fell asleep. At 1 there was a knock at the door and a member of the night staff asked if we wanted anything. To be honest, at first I was a bit miffed to be woken – Robyn slept on.
David’s breathing had noticeably slowed and I sat and watched. At around 1.15 Robyn woke, looked at her dad and said she thought we were getting close. We held his hand, told him we loved him and then I felt moved to pray. As I was asking the Angels of the Lord to meet David and take him into the presence of God, he stopped breathing.
David died at 1.30 am on Wednesday, May 13, aged 72. As I have said, he first began to be noticeably affected by young onset dementia 17 years ago when he was 55. Our family did not live well with dementia, not at all, none of us. David was angry and in denial, refusing both to accept the diagnosis and to have any discussion around how we might deal with it. The changes his condition caused included verbal, emotional and physical abuse directed at all of us, eccentric and unpredictable obsessions, and other behaviours that were hard to accommodate. As time went on and the illness progressed, things got worse and David began to endanger himself as well as other people. At first we had a carer coming into the home whilst I was at work and when the children were away at university they would often return at weekends to help but around 7 years ago we didn’t feel we could keep him safe and we placed him in the first home.
I had observed and worried about the way in which my children experienced their dad’s illness and I was shocked by the limited resources available for young people in their position. As a professor in a school of education who has a commitment to making private troubles public concerns with a view to working towards transformational social change I was well placed to look into the perceptions and experiences of children and young people who have a parent with a young onset dementia and I put together a proposal for a project that was duly funded by the Alzheimer’s Society (grant number R138585), employing the wonderful Dr Mel Hall as the Research Officer. In the course of this project we spoke with twenty-three 6-30 year olds who told us their stories about various aspects of their young onset dementia experiences, and one of the areas they talked about was grief (Sikes & Hall, 2017).
There is a literature that deals with the particular grief experienced by family members of a person with dementia because of the ways in which the disease progresses. Consequently, dementia has been described as ‘dual dying’ (Jones & Martinson, 1992). In this view ‘bereavement’ is experienced firstly as the disease evolves and ‘takes away’ the known person giving rise to ‘pre-death grief’ (Holley & Mast 2009; Lindauer & Harvath, 2014) and a sense of ‘ambiguous loss’ (Boss, 1999), then secondly, when physical death occurs. Participants whose parent was still alive speculated on how they would feel when they eventually died and in all cases the expectation was that they would be prepared because the death had been anticipated. There would also be relief because of ‘deliverance’ for their parent and themselves. Robyn and I had thought that this is how we would feel but, at 1.30 on that Wednesday morning, our hearts were broken. In spite of the extremely difficult 17 years we had been through in which guilt and anger and hurt and concern for David’s quality of life all featured, we didn’t feel relief. We just felt devastatingly sad. I have to say here that I also felt inordinately proud of our wonderful daughter who, I believe, managed a peaceful death for her father. What a gift to give to anyone.
And then, we had to go our separate ways and carry on social distancing. Friends and family have sent cards, texts, emails and flowers. We have been showered with love and care but death in the absence of hugs is bloody hard and in some ways mirrors the loss of the meaningful and reciprocal contact that we had not been able to have with David over the last years.
One of the lessons we take away is that theorizing about death, and academic models that suggest ways of predicting grief, are all very well on paper, but in practice the rhetoric does not describe or help with the reality. This leads us to say don’t worry if, when you have to face the dementia death of a loved one, you think you are going mad because your experiences don’t match the prescribed stages. Your grief is your grief and it cannot be generalized. I hope too that, when your time comes, you will be able to have hugs aplenty.
We have since learned that David’s Covid test was lost – which is apparently not uncommon. Following his death, everyone in the home was tested and all results were negative. David may not have died as a result of Covid19 but the pandemic certainly impacted our experiences of his death.
Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA: Harvard University Press.
Holley, C. & Mast, B. (2009). The impact of anticipatory grief on caregiver burden in dementia. The Gerontologist, 49, 3, 388 – 396.
Jones, P. & Martinson, I. (1992). The experience of bereavement in caregivers of family members with Alzheimer’s disease. IMAGE: Journal of Nursing Scholarship. 24, 3, 172 – 176.
Lindauer, A. & Harvath, T. A. (2014). Pre-death grief in the context of dementia caregiving: A concept analysis. Journal of Advanced Nursing. 70, 10, 2196 – 2207.
Sikes, P. & Hall, M. (2017) ‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia Mortality, 22, 4, pp. 324 – 388.
Pat Sikes is a Professor of Qualitative Inquiry in the School of Education, University of Sheffield, retiring in September 2020. Over the past 40 years she has been interested in using auto/biographical approaches to show how personal troubles are often public concerns, with a view to promoting reflection and, potentially, transformational change. In 2014 her focus shifted from exploring aspects of teachers’ lives and careers to young people’s perceptions and experiences of parental young onset dementia, involving work with various stake holder groups.