BEING AND REMAINING IN CONNECTION
Being in connection
Finding active ways to connect to ourselves, each other and our life world more generally makes life meaningful and helps the sense of isolation experienced by people with dementia and their carers. It is easy to forget that the experience of dementia is relational. We are, all of us, relational beings – meant to be in connection with others, meant to be held in connection with others.
Our task as carers is to hold a person with dementia in connection for as long as that is humanly possible – and to find ways to ensure that happens. That might mean at home, going out or visiting if your loved one is in a nursing home.
Difficult emotions will be experienced by the person who has dementia and also by those who care for them. Carers who can, for the most part, manage their own emotional roller-coaster experience will be better able to cope with the difficult and often unpredictable emotions of people with dementia. Doesn’t mean we always achieve this – but ‘good enough’ is good.
Difficult emotional times underscores the need for emotional connection. This can be encouraged for many people with dementia by providing opportunities to feel and experience the simple things that promote positive feelings like music, dance, children, animals, and sensory activities.
And it also underscores the need for emotional connection for carers – the person you are caring for may not be able to give you the support you need – make sure you find time to spend with others, find stimulation in a movie, invite someone over for a cuppa. Avoid the loneliness. All of us need to know that there are people holding us is connection, not just the person with dementia.
A moving video about vulernability, connection and touch
A story from Gaynor:
Charlie was a strong and caring man, always there for others. So it was hard when he looked at me with so much fragility in his face, his emotional pain obvious. ‘I just can’t remember anything. It’s terrible. I just can’t work it out, you know, that place . . .’ He didn’t have the thoughts, nor the words. He would sometimes have tears in his eyes. His confusion was great, and so was my anguish. I would get him to sit down, maybe with a cuppa or a chocolate, if something ‘nice and comforting’ was handy. I would put my arm around him and tell him that I understood, that he didn’t need to explain, as I knew he had not been well, but that it was ok. It was ok not to remember because I was there, and I could remember for him. I would reassure him, let him know I always would be there. And I would laugh at things I sometimes couldn’t remember – what’s wrong with forgetting, after all! – and, anyway, it might come back to him, or to me, later on . . . and he would relax and we could find other things to do.
I came to see that vulnerability was one of the most important ways for me to think about the impact of dementia on Charlie. We are all vulnerable at different times in our lives – because of sickness or injury, fear in threatening situations, running out of money, being lonely – so many times. And we are vulnerable even when we don’t realise it – like toddlers who think they can run but don’t know that there is a road in front on them. And we can feel vulnerable even when the threat is not real, afraid of an unknown.
That is when we need to feel safe, to be reassured by people we trust, to have our calm and strength restored. And that’s what Charlie needed lots of – reassurance. And explanations, even if he didn’t always understand them, he knew I was trying to explain!
I learnt to see that so much of his frustration, the lashing out, anxiousness, stubbornness, aggression, could be seen through the same lens – when he didn’t understand what was going on, what he wanted to do, what he ought to do, or why people were doing things to him, or why he couldn’t go and do things he wanted to do. I did lots more gentle explaining, all the time. Not that it always worked to calm or reassure him, but lots of the time it did.
Distress veiled as paranoia - Teepa Snow encourages us to understand what is going on for a person emotionally by investigating what is lying or feeding what seems to be paranoia
The hiddeness of the disease - this song was written for this man's stepson who has autism. He talks about the vulnerability that comes with the hiddenness of the disease. We thought it related well to the experience of having dementia. Have a listen if you can.
understanding a changing relationship
Teepa Snow on Changing Relationships
Teepa looks at the frustration and grief that can be felt when a relationship changes - as a person with dementia begins to change. She says that maybe we can 'try to let go of trying to fix, and be willing to try something new'. She suggests looking for ways where the relationship was enjoyable before without having to talk and starting there. She also encourages carers to not place all the pressure on one's self to connect but to bring otehrs in to connect together or 'among us'. This goes for 10 minutes and is not a hard listen.
understanding CHANGES IN THE BRAIN
It is the work of Positive of Approach to Care (PAC) and Teepa Snow that enables us to provide much of the content for this and many other sections of the website. Teepa Snow has an ability explain how the brain changes with dementia and how this affects, connecting and communicating in an accessible and practical way. In the videos below she describes these changes and affects and then provides ways in which carers can work within these changes to enable continuing connection.
Vision can affect communication
and therefore connection