Christine (Daughter and family carer): My mum (Margaret) died on the 8th June 2017 at the age of 96 years. Following a diagnosis of vascular dementia four years ago, we were concerned about how she would manage in her own home, where she’d lived alone since my dad died over thirty years ago. We wanted her to move in with us as we had space and we had plans to extend the house, but she wouldn’t agree to it. She wanted to stay in her own house for as long as possible, so for a while we managed around that, although it was quite stressful for me. Mum had council homecare, but she didn’t like it. She didn’t like having people coming to the house and she complained about it. The workers were nice and our experience of council homecare was reasonably positive, but it was quite inflexible. In time, and as she deteriorated, we managed to persuade her that she’d be happier living with us, and we adapted our ground floor so that in the end she moved in with us for the final two years of her life. When Mum did move in I was concerned that she wasn’t going to be safe by herself while I was out at work. I leave the house at 9am and I’m not back until 6pm and that was too long, even with the council homecare workers coming in. I began looking for another solution and found out about Self-directed Support (SDS). Thanks to a local support organisation I applied for SDS and opted for a direct payment so that I could arrange and manage Mum’s support myself.
Joanne (PA): My parents are Scottish, but until returning to Scotland sixteen years ago I had lived all my life in Zimbabwe. I have always worked in an office environment, but I began to volunteer with the local Credit Union here and this put me in contact with older people in particular who were benefiting from locally organised support. I began to feel that this was something I would like to do. The support for people here is so different from Zimbabwe where families are expected to provide all the care and support and if that is not possible then the only option is to pay privately. There’s so much more choice here although I appreciate things are not perfect! I initially worked for a care agency and when Christine used the direct payment to contract with the agency, I was identified to work with Margaret. Margaret and I got on well from the start and I enjoyed working for her, but I was unhappy working for the agency. There was little training or support for staff and we were moved around at short notice. This was very unsettling for Margaret as consistency was crucial. She would get upset and not let new workers assist her.
Christine: I was unhappy with the service, but I was delighted with the way that Joanne worked with mum. She understood mum’s needs down to the finest detail like the correct temperature of her tea! And she was a dog lover. We have three dogs and although that may seem a minor issue the dogs were part of mum’s and our family’s life. Most importantly I trusted Joanne implicitly. I could go to work and not worry – this was so important. I eventually asked Joanne if she would leave the agency and become a PA employed by me. I was so conscious that, given mum’s deteriorating condition, it was unlikely that I could guarantee Joanne long term employment, but she agreed to take the risk.
Joanne: At first my main tasks were some personal support, meal preparation as Margaret loved her food, general supervision to keep her safe and to provide stimulation. Margaret had kept diaries and we spent many hours going through the diaries or looking at old photos with Margaret telling stories and reminiscing. I would also look for interesting news articles which we could talk about. The aspect of the job that I most enjoyed was doing my best to give Margaret quality time. Due to a fall Margaret broke her hip and was admitted to hospital. This was very difficult for her, but I, and her other PA Jennifer, continued to support her for the five weeks she was in hospital. The hospital staff tolerated us, but did display a rather cold ‘why do you need to be here’ attitude. Margaret was very frail by this time and we provided personal support, fed her with food Christine prepared, and just provided conversation and reassurance that someone was there with her.
Christine: Things were not great by this stage and I was determined mum would come home for her final days. I have to say that once the decision was made, health staff were hugely supportive. The hospital developed an end of life plan with me so we were clear about everyone’s responsibilities whatever happened. The GP and district nursing staff were very helpful and we received a high quality hospital bed and appropriate equipment from the local joint equipment loan service. Thanks to previous training and advice from health staff, Joanne and Jennifer were able to undertake the personal care tasks that were now required for mum. Mum died on the 8th June – election day. It was unexpected but very peaceful, and she passed away just minutes before the exit poll announcement at 10pm, with me and two of her beloved grandchildren beside her. We kept her at home overnight and in the morning I phoned Joanne and Jennifer to let them know – two phone calls I was dreading. Joanne: I came round and together with Christine we prepared Margaret for the arrival of the funeral directors. I felt it was my final act of giving to Margaret’s life. I’d really liked working for her and it was so rewarding to know that I had made a positive contribution to this final chapter. I can honestly say that I did not dwell on the fact that I would inevitably lose my job. Now a few weeks down the road I have just accepted a job with an agency that offers the opportunity to work specifically with people who have dementia. However I would definitely work as a PA again if the right job came up. Christine: The high quality of support mum received was the result of a combination of forward planning and having good people around her. I spent a lot of time planning the best possible support option before she moved into our home and again with health staff prior to her hospital discharge. Having Joanne and Jennifer, who were so committed to her and understanding of her needs, was an immense comfort to all of us.