While I did 4 days of cognitive coaching in Genoa last month, most of my holiday has been spent with family and friends. I visited a friend in Croatia, went to our daughter’s graduation for her MA, helped her find a place to live in London, and then the following week helped her move in, but most of the time I’ve been with my mother, who last year was diagnosed with dementia. It’s been a challenging time as I am having to learn so much about what this condition entails. And I’m having to revise my own ideas of what my mother can do and what she is experiencing, almost on a daily basis.
As this blog is called Tech Transformation, I also wanted to share some resources that I’ve been using as I try to come to terms with and to help Mum cope with this disease. I have found some great resources on the internet to educate myself about what is happening and what we can expect, and I’ve been using an app to help me cope with what at times can be stressful and challenging.
One of the best sites I’ve found is the Dementia Friends website set up by the Alzheimer’s Society. This website aims to change people’s perceptions of dementia. One of the most helpful resources to inform people about dementia is the bookcase analogy. I found this on YouTube and am sharing it here as it’s a good, clear explanation of what people with dementia are experiencing:
In my mother’s case it’s clear that there are many books that have “fallen off the shelves” and at the same time others that have been put back on again in the wrong order. Sometimes a memory is true, but the people in it or the time it happened are not. And there are some strong emotions attached to memories that are now unreliable. We started to notice a loss of short-term memory in Mum around 2 years ago, though it took a year (and a brain scan) to get a final diagnosis last summer. During this time Mum has become confused and has some difficulties communicating and planning. I have also seen it affect her moods and emotions, and have seen her becoming frustrated and angry about everyday things. Some days it’s like living with a 2-year old again, and I’m having to draw on strategies that I haven’t used since my own children were toddlers in order to cope. At the same time I’ve seen that Mum does still enjoy many of her hobbies and loves being with people – and that this does work well in small doses. We know that people with dementia are often happier if they can live independently in their own homes, so that is what we are trying to make sure can happen for Mum, with increased support.
But what I have come to see over the past 5 – 6 weeks is that it’s important to care for the people who are looking after loved ones with dementia too. And as I’m still learning how best to support Mum, I do a lot of things wrong, and then feel upset and think how I should have done something different or said something in a different way. It’s a learning experience for me – and this is hard learning!
Mum lives on the edge of a large park, and to help me de-stress I’ve been walking. I downloaded a step app onto my iPhone and have set myself the goal of walking 10,000 steps a day. I go out in the morning and the evening and simply being out in nature is calming. I've tried several different apps, but have settled on one called Steps. It’s simple with just a background that changes colour like a sunrise the more steps I take each day. I have stuck to the recommended 10,000 steps (7 km) but it’s possible to change the goal. So far the only problem I have encountered with this app is that using the GPS does dramatically reduce the battery life.
As well as this I have been using Buddhify for guided meditations. During my time at Mum’s I have focused on 4 specific areas of this app:
- Parks and Nature
- Walking in the City
- Difficult Emotions
- Feeling Stressed
In the Parks and Nature section there are 4 meditations. These focus on recognising how much bigger than ourselves nature is, letting nature inspire you with kindness, paying close attention to our senses, and inclining our mind towards peace.
I’ve done the Walking in the City sections out in the countryside on my daily walks. In this section there are 6 meditations. These use outer space to bring inner space, connect you with your stride and the physicality of movement, help you notice a sense of stillness while moving, and spread kindness to those around us. There is also a sitting meditation that can be done in the city.
As well as these, while walking in nature I’ve been listening to the sections about stress and emotions. In the Difficult Emotions section there are 5 meditations that deal with self-judgement, recognising and allowing the difficult, giving space to difficult things, seeing how emotions move and change, and exploring the details of our emotions.
Finally in the Feeling Stressed section there are 6 meditations that deal with breathing, moving out of your thoughts and into your body, replacing negative thoughts with neutral ones, understanding your stress and becoming free of it, and the RAIN technique for dealing with difficult emotions.
This summer, as I have been walking around and thinking I know there are some hard decisions to be made. When I get back to school I need to decide whether or not to renew my contract for a further period of time, or whether next year will be my last one in India. I need to balance my professional growth with the support I can offer to my family. These are hard decisions. I hope that becoming more mindful will give me the confidence I need to make good decisions.Photo Credit: Dalal Al-Wazzan via Compfight cc
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