Since mum went into care in October 2015, I have been wondering whether an institutional home is the right place for her. Experts and professionals involved in dementia care have insisted to me that she is better off in a care home. This reassurance has put my mind at rest for weeks, and even months, at a time. However, the question invariably comes back with greater force and more insistence than before.
Decision to move into a care home
My sister Christine and I looked at care homes while our mother was in hospital for six weeks in October 2015. We could see that she couldn’t live on her own again. Her friends had been talking up the benefits of a care home, even before the mini-strokes that rendered her confused and dependent. Nevertheless, I remember being dismayed it was the only option presented at the hospital’s Best Interests meeting. It was decided that my mother, who had lived independently until a few weeks before, didn’t have the capacity to decide about where she would live, or how she would be cared for. Nobody involved my mother in this huge decision that affected only her. My sister and I were still reeling from the sudden dramatic changes in my mother, and knew little about her capacity to engage with such decisions, or how we could support her. I’m still not entirely clear what we should have done.
When I did take mum to see an award-winning care home, she was understandably frightened by the prospect of moving there. She felt physically sick. The specialists in the Best Interests meeting at the hospital didn’t present any other possibilities. They did not suggest ‘the least restrictive option’ which, as I now know, is prescribed in the Mental Capacity Act 2005.
Not happy where she is
The simple fact that fuels my constant nagging doubts is that mum is not happy where she is. She feels alone, surrounded by strangers. She spends significant periods of time anxious and unhappy. She becomes dismayed and distressed when she discovers she can’t get out. Given this, living at home with live-in carers would probably not be a better option. They would also have to restrict what she could do, and I suspect could not address her sense of isolation. What she needs is the comfort of knowing that her family are near.
Happy to be with family
When I arrive at the care home I sometimes watch mum for a few moments before she catches sight of me. When she sees me, the stress or agitation drains out of her face, sometimes immediately. She often greets me as if she hasn’t seen me for a while, with a big surprised smile and arms outstretched. Sometimes she collapses into tears on seeing my familiar face. Being with family is reassuring and takes away her sense of isolation. Between us, my sister and I visit daily, but that still leaves huge chunks of every day on her own.
Deprivation of Liberty Safeguard
In August, I withdrew my support for the Deprivation of Liberty Safeguard that allows the home to keep my mother locked in for her own safety. If no family member is prepared to sign the document, an expert called an Independent Mental Capacity Advocate (IMCA) is engaged to assess her needs. I hoped that mum’s persistent stated desire to get out of the home, her distress at being locked in and her many attempts to break free, would force the IMCA to present other options for us to consider. Instead, when mum was recently assessed, the advocate just endorsed the Deprivation of Liberty Safeguard. The IMCA didn’t consult me, which I expressly requested, and she didn’t offer a ‘less restrictive option’. I am still trying to get to the bottom of this.
If we were advised that mum would be better off at home, with family around, I would feel compelled to make that happen, or at least give it a try. I am not an expert, and I know you shouldn’t move people with dementia without good reason, so I don’t feel able to make this decision on my own.
Also, such a move would have major implications for me and my husband, Jack. I am aware that many others have made huge sacrifices to look after a parent living with dementia at home. These real-world angels have suspended their own lives to ensure their parent’s last years are as peaceful as possible. At a three-day workshop to support carers of people with dementia that I attended last week, I met amazing people doing just that. I must admit that I don’t want to disrupt my world in this way, but the alternative isn’t great either. My mother’s frequent distress hangs over me like a mist that won’t clear.
Time to decide
So how do I decide? Penny Garner, the pioneer of Contented Dementia, has re-inspired me to get back to work on ‘spotting’, a process I describe here. Penny has offered to help me make sense of mum’s words to see if between us, through trial and error, we can come up with some better, simpler guidance for the care staff to improve mum’s wellbeing. So, I have gone back to recording my mother’s words and transcribing them into my ‘Spotting’ document. I have also asked care staff to once again note all her most frequent questions, so we can try out more palatable answers. It feels as though we are testing the Contented Dementia method on its most awkward customer.
I am happy to say mum has been more settled this last fortnight following a change in medication. With this, and Penny’s expertise and support, I am feeling more hopeful. I’m setting myself a deadline of the end of February to make a final decision. If things haven’t improved by then (when I return from a three-week holiday) I will feel compelled to act.