On 5 November 2015 my Auntie Betty died. She was 87, lived in a nursing home and had lived with dementia for many years. I realised in the difficult first weeks following her death, how much Betty changed my perception of dementia over the years; what a positive view she presented of what is so often dubbed a cruel disease, a disease that steals life away … I am glad no one has trailed out one of those tired and untrue phrases such as ‘it’s probably for the best’ because I don’t see it that way at all.
Betty’s life was not stolen by dementia. She continued to live, to communicate, though she could verbalise very little, and to enjoy life. This is not the view of dementia that we see yet Betty has proven that it is possible to continue to be yourself, to make the most of life, to grasp the care that is offered and keep on living. She surprised us all when she died as she had been so well; smiling, interacting, being part of life. The time from rapidly failing health to death was quick, she did not suffer and was peaceful at the end.
The Betty I had always known was very much there to the end, regardless of dementia; it did not define her and it was not all she was. She was a sister, an aunt, a great aunt and a great great aunt. She lived and worked in Inverness as a civil servant. Betty could knit like no one else I have ever known; Fair Isle knits, any kind of complex knit you could ask of her. If she was growing up in current times, she could have made a fortune. She was, for many, many years, a Brownie Guide Leader and gave herself fully and enthusiastically to the role. A calm person, a quiet person, a private person, yet she was able to hold the attention of countless young girls over the years; some, no doubt, wished she was their auntie and I feel lucky that she was mine. Betty learned to drive at a time when few owned cars, fewer less young single women. She owned and drove a car for years – for as long as I can remember a mini, dubbed ;The Min’. Betty loved her cars and, assumably, the independence that went with them; she was devastated to have to stop driving when the early stages of dementia forced her hand. She moved from Aberdeen to Inverness to pursue her career in the Civil Service; again, unusual for a young woman in those times.
After her retirement, Betty moved back to Aberdeen and lived with her two sisters, Myra and Jean. The three of them shared holidays and interests, from bowling to the Girl Guiding Movement, to crafts, to walking; they were always active. I wonder now how difficult it was for Betty to move back ‘home’; she had carved her own life in Inverness through her work, had her own friendships and life there. When the flat ‘the aunties’ lived in was cleared at the point when Jean, the eldest, also moved into Angusfield House Care Home, we found all Betty’s retirement cards. There were so many and the affection toward her, the respect for this quiet woman, was clear to see.
To me, Betty was always there. She was one of those people who, perhaps, was more in the background, yet that gave a sense of safety, security and I hope I never took it for granted. She loved her family deeply. I have a memory that brings a lump to my throat very time I think of it, which was when I took her sister, Jean, to see her last February. Jean had been unwell and unable to visit Betty at the care home though, previously, she had visited several times a week. When Jean went into the lounge and sat down, the two sisters looked at each other and grinned; Betty said a few words – simple and evocative; ‘Jean, Jean’. She was so obviously pleased to see her sister and there was absolutely no doubt she knew who Jean was despite not seeing her for about six months.
Was Betty just lucky? Did she happen to have a contented dementia that is denied others? I don’t think so. I believe there are a number of factors that contributed, though I do accept such contented dementia is not evident for all, whatever their circumstances. One was continued family support and contact, primarily from her elder sister, Jean, who carried on visiting regularly until her own health prevented this. The rest of us visited too but, living in England, whilst Betty lived in Aberdeen meant that, though visits were regular, they were rather more spread out. (It is possibly easier and cheaper to get to Spain than Aberdeen) Then there was the care and love Betty received at the home she lived; Angusfield House Care Home in Aberdeen. She had gone from home to hospital as her health declined some four years ago; when she emerged from hospital to the home we all feared the worst as she was so frail and ‘switched off’. Angusfield nourished her in all manner of ways. As well as having good food and staff with the time and patience to feed her (Betty had always eaten slowly), they realised quite quickly that she would be better off in the downstairs part of the home rather than the ‘Dementia Unit’. This proved to be an inspired move; Betty slowly came alive again, began smiling and being part of things; it was a wonderful transformation. Each time I visited, she looked stronger somehow and was taking her place in life and living it. The last time I saw her was just a few weeks before she died; she had been smiling, holding my hand, alert and very much part of life at the home. The affection for her from the staff at the home was evident; I could see they enjoyed engaging with her, celebrated every small part she grasped in her life.
When I got the phone call telling me that Betty was very ill it was hard to compute with how she had been, hard to remember that she was, despite how well she had seemed, frail and vulnerable due to her advanced dementia. I had been on alert due to Jean, Betty’s sister, having been so unwell, expecting and dreading the phone call saying she had deteriorated, or worse, yet here was a call about Betty; it was hard to take. I knew, from the gentle yet honest way the staff members spoke to me that there was no hope of improvement; Betty’s end was close. Today, I am sitting finalising this writing the day before her funeral; arrangements are made, announcements out, plans in place … I have visited Jean at the home several times, we have cried together, we have reminisced; it is so strange to be there and for there to be no Betty who had become so part of the place. It was, without any doubt, her home and, I admit, I never imagined I would say that. I have worked as an advocate with older people living in many residential care homes and I don’t remember one where it seemed it was their home; it is good to have had my view changed.
Why ‘Wearing Blue for Betty’? Simple really, blue was her favourite colour and I have been wearing something blue in her memory and in honour of this lovely, special auntie, ever since she died. It signifies her life, her as a whole person, everything that she was. It is a reminder that dementia did not steal her, or her life, from either her or others who loved her. I am wearing blue for Betty and I am proud to have known her; I am humbled by her dignity, her quiet determination, and how she lived with dementia.
© Liz MacKenzie