It’s been several weeks since I attended a valuable and engaging programme for carers of people living with dementia. It is a new initiative, and this was the first in a series of pilot courses run by Dementia Carers Count. Since the three-day programme, that took place in a comfortable hotel in Swindon, I have been reflecting on what I learnt.
It was evident that a lot of thought had gone into the course to ensure participants got maximum benefit from the time they invested. The approach to designing the course was rigorous. It was informed by the latest evidence, by a survey with carers and an advisory panel of carers. Scriptwriter Ming Ho, who blogs about her experience as a carer, is on the panel. I am grateful to Ming for alerting me to the course via twitter.
During the three days I felt in safe hands. The programme was led by people with wide experience and a deep knowledge of dementia and dementia care. There was a good mix of useful topics including:
- how functions and abilities are affected by dementia, depending on which part of the brain is impaired by the disease;
- how we, as carers, can help to reduce stress and the impact of the disabilities caused by impairment of the brain;
- how we can look after ourselves and strengthen our own personal resilience;
- practical exercises including deep breathing and meditation to help us de-stress.
It was especially helpful to meet other people facing similar challenges. The sessions were held in an atmosphere of caring and mutual support, which felt safe and nurturing. So, what did I get out of it? And what exactly did I learn?
Keeping the Chimp in Check
We learnt about the chimp that resides in each of us. When we feel threatened or stressed, our chimp unhelpfully takes over, reacting automatically and generally behaving badly.
It is well recognised that carers of people with dementia suffer increased levels of stress. According to Alzheimers Society, “nine out of ten carers for people with dementia experience feelings of stress or anxiety several times a week.”
Having identified what triggers the chimp, we then learned strategies to help keep our chimps at bay.
Deep Breathing to Banish the Chimp
Once the chimp has taken over, our breathing becomes more shallow, depriving our brain of oxygen, and perpetuating a feeling of anxiety. One strategy for dealing with this is deep diaphragmatic breathing. With helpful drawings of lungs and diaphragm, we learnt how to breathe deeply in such moments. I have previously described deep breathing exercises I do with my mother. Although the results are good, I wasn’t always sure if mum was getting the technique. A helpful tip, when teaching others, is to suggest they start by breathing out as much as they can, so the next breath would automatically be deep. I am now more confident using this technique with my mother.
Moving from Survival to Recharge
In a session called Looking After Yourself and Building Resilience, we were encouraged to consider how much time we generally spend in four different Emotional Zones; 1) Surviving, 2) Thriving, 3) Burnout and 4) Recharge. After an explanation of what the different zones were and the emotions associated with them, we were encouraged to consider what triggers us into the depleting ‘survival’ zone, and what we could do to spend more time recovering in the ‘recharge’ zone. I learnt the hard way, how essential it is to take care of yourself as I describe in a previous post. This session was very helpful in reminding and reinforcing what I now know.
Rights of People with Dementia and Carers
There was a session on rights for people living with dementia and their carers, and benefits. I was particularly interested in the Mental Capacity Act which I have since written about. Although a friend had mentioned the Act to me previously, I had never looked into it. As a result of the session, I now know the basics and where to go for more information. I also refer to it in a recent post which considers where my mother should live.
Resolving a Difficult Personal Issue
The last session on the last day was a Group Coaching Session facilitated by Sue Jones, Dementia Carer Services Consultant. I raised an issue that had flummoxed me, and I found awkward to talk about.
My mother, sometimes speaks to me as if she thinks I am her partner, and that I am leaving her for Jack (my husband). She says that, although she is hurt, she understands and will be grown up about it. Such episodes have triggered lots of difficult emotions for me. I have been careful to mask my emotions, but struggled to submit to my mother’s reality, as I ordinarily would. The difficult feelings have lingered long after the visits. Mum has also referred to me as her husband, when introducing me to other residents in the home, and often thinks a photo of her young husband is me. I guessed these issues might be linked.
I appreciated the sensitivity of the group and the wisdom of Sue, in bringing a new perspective to this issue. With dementia you do sometimes use the wrong words, especially those stored in the same place (for example, terms for loved ones). Also, it is possible, as mum is invariably sad when I’m leaving her, that she does get jealous of Jack, my husband. I often allow her to believe that I am going home to cook for him, although in reality he is many miles away at our home in Brighton, and I am temporarily living on my own in my mother’s house. So, she probably does feel I am always leaving her for Jack.
This new, less challenging, perspective helps me enormously, and was definitely my best moment of the three days!
See a short film about the programme.