Last Friday, mum burst into tears when I arrived at the care home. She was upset about not being able to pay for lunch, having accumulated debts, and having to rely on others. Lunch is included and she’s not in debt, but yes, she is relying on others.
Through her tears, she explained that her parents had done their best, but there was never much cash. Money has been a lifelong concern and preoccupation for my mother, as for many of her generation, growing up as they did during the second world war and a time of rations. According to Contented Dementia, mum would have been scrambling through her ‘photograph album’ looking for memories from her past to help make sense of her current situation.
Money worries and escape attempts
These days mum gets anxious at lunchtimes. Her fear that she doesn’t have enough money to pay for lunch sometimes triggers other feelings and vulnerabilities. I created a lunch voucher for her to hand over to staff to avoid the issue of money altogether. The staff played along taking her voucher as ‘payment’, but this clearly hasn’t worked.
Several times recently, and this may be related to her distress at lunchtime, mum has tried to escape from the care home. She has tried to force the doors open, and has pushed away anybody who attempted to stop her. Twice she has succeeded in slipping out unnoticed as unsuspecting visitors have arrived. Once she found the normally locked garden gate open, so she simply walked out!
On hearing about Contented Dementia, and doing the Family & Friends Introductory course last June, I continue to be hopeful that this approach may offer a solution for mum. It has already helped, but I have yet to develop the elusive formula. The Contented Dementia method relies on a family member developing a profile of their loved one based on close observation. See the Contented Dementia Trust’s description of this process.
For my mum’s profile, I need to discover what she is most concerned about, the responses that will allay her concerns, and the primary themes of her life. Following this, it should be possible to develop a care plan or ‘Passport’ involving phrases and activities, that if replicated accurately and repeatedly by the care staff, should help to keep mum calm throughout the day. In this short film, Pippa explains how she used the method to get her sister to take a shower, something she had been wholly opposed to. Once she had found what worked the care staff were able to use the same strategy successfully.
My efforts to develop the Passport
I had an initial go at setting up mum’s own Contented Dementia passport about nine months ago. The care home management and staff, and the local hospital consultant psychiatrist and occupational therapist have all played a role, supporting my sister and I in implementing the Passport.
I thought things were working quite well until five months ago. Since then, mum has been getting more and more agitated when my sister and I are not with her, and sometimes even when we are.
Based on advice from Penny Garner, the inventor of Contented Dementia, I am going back to basics in order to refine mum’s Passport. My current priority is to identify what she is most concerned about, and then find responses she is most satisfied with. Although we have some ideas around money concerns, we haven’t found a way of pre-empting the lunchtime anxiety and distress.
Observe and track
To do this, I need to make a note of all the questions mum asks, because behind those questions lies clues about what is making mum anxious. Once the top questions are identified I then need to monitor how often she asks them until I know her top three to five questions. After this, I should try different responses to each of her top questions, and assess her reaction to each on a scale of one to ten, until I find an answer that works and that she is comfortable with every time.
Finest hour stories
I also need to find mum’s ‘finest hour stories’ for each of her ‘primary themes’. Primary themes are the main elements that make up her life experience and identity. So, for mum her primary themes are church, nursing (and caring for others), money, family etc. These are then plotted on an interconnected web diagram. For each of the key themes, I aim to find mum’s ‘finest hour’ stories, and identify which of these is the most significant.
Mum not proving to be compliant
I am currently recording mum’s words, and transcribing them after my visits, as it will be important to use her words when it comes to trying out statements and phrases later. There is one hitch though. My mother doesn’t like to talk about herself, and never really has.
To find out all of the above I need to prompt mum to talk about herself, when not distressed. There are techniques for doing this, that don’t involve asking direct questions. For example, if I want to find out about her years of dedicated work with the church, I could get her onto the topic by wondering out loud about how the church would survive without volunteers. But somehow this only reminds mum of the wonderful vicars at her churches past and present, or her many church friends. She can quite happily talk about them, but about her own significant contributions to the church, she has nothing to say.
So, this is proving to be a slow process, and at times I wonder if we will ever get there. Also, I frequently find that I just want to visit her, rather than plan endless attempts to prompt monologues that never come.
Last Friday, after a while of listening, and reassuring mum, we eventually went out to the local country park. Gradually, the gloom lifted and she slowly recovered a sense of calm as her attention turned to the trees and the birds, a pot of tea and an ice cream.