At one of the Clear Voices groups this week we had a very interesting discussion about ways in which people cope with the experience of living with dementia. The members of the group all have a diagnosis of either Mild Cognitive Impairment or early stage dementia and we regard them as our pool of experts.
One of the surprising things which emerged, which impacted on all of us – people living with dementia and helpers alike – was, surprisingly the importance of names. One man has been called by a shortened form of his name all his life. When he found his way to Tibbs he did not say this, so we fell into the way of using the full version of his name. Apparently, this is the first time he has been known by this name and her absolutely loves it! It seems to be something to do with his sense of identity – a new identity which he has gained since becoming part of Tibbs. Another member was introduced to us by the English form of her name. There happened to be two women with the same name in the group and she was becoming confused as to which one we were referring to. So, one week she formally asked the group if we could call her by the Irish version of her name which she had used at home. So now that’s what we call her, and she has a new name badge to prove it. She’s very happy. Two of the helpers – me being one of them – have a strong dislike of their name being shortened. Speaking for myself, it just doesn’t feel like me if I’m called Margaret instead of Margaret-Anne. So, we realised in the group that names are part of who we are and that it is very important to preserve our own sense of identity. As somebody in the group said, “It’s all about being yourself”.
Everyone agreed that you have to be adaptable if you develop dementia. Things will start to change and keep on changing and it is those individuals who are able to bend to the prevailing wind when it starts to blow from a different direction, who survive best. One member described how he loves to go out walking but realises that he has got lost on several occasions. He is in a familiar street in a familiar part of the town and suddenly he has no idea where he is. So he has made a deal with his wife that he always tells her where he’s going and when he expects to be back. She panics he says, not me. But he realises that this is how it has to be from now on if he wants to go on walking on his own. “I have to accept that my days of going off on my own are over. I have to accept that” he said.
Arising out of that several people said how important it is not to panic. If you are out walking and you suddenly get lost, the worst thing you can do is panic. One member describes how he continues walking until he recognises a shop or building that he does recognise. Then he calms down and works out how to find the place he’s looking for. I think all the men who talked about this experience are walking in very familiar territory.
Patience was another thing which people wanted to talk bout. Particularly people living with husbands and wives or grown-up children felt that they had to be patient with other people. Several people described feeling irritated when other people keep telling them what they can and cannot do. “I want to be taken seriously” said one person. “I am a person, not a chair”. But they have learned that their lives are now restricted because their families love them and worry about them and want to keep them safe. So, they use strategies like going into another room or keeping their mouth shut when they want to let fly. People seemed to feel that these are skills which they are learning since they developed dementia – or perhaps consciously making use of them.
Everyone in the group agreed that a sense of humour is very important. If you smile at someone they will smile back. If you do something silly, make a mistake, get something wrong the best thing is to laugh about it.
The group concluded with the statement from a member which really made us all reflect. “Be thankful that you haven’t got something worse – like terminal cancer”. So, we ended the session with everyone feeling very positive.
Later I did a bit of an internet search and found a handout from the Alzheimer’s Association of Australia called “Tips for living day to day”.
It was interesting to see that “Accepting changes in abilities” was on the list;
“Recognise that some things may become more difficult for you to do”
“Try to accept that these changes are out of your control and focus on the things you can still do”.
Another one was “frustrations with care partner or those close to you”
“Try to remember that they did not ask to be put in this situation either and that they have their own fears and frustrations. Work together to make the situations better”
“Feeling like others have limited awareness of my feelings or how certain actions affect me”
“Be open with others. Ensure that your care partner and friends are just as informed as you are about the disease and its impact”
“Inform the other person about what they did and how it made you feel”.
That’s a different response. Is it an Australian versus a British response.? Maybe we are more inclined to keep our mouths shut than our Australian cousins?
It’s a good handout. You will find it at www.alz.org. On the home page there is header called Life with ALZ which takes you to a page called Tips for Daily Life which has a lot of practical suggestions in the form of a pdf document.
But it’s good to know we are building up our own body of Experts from Experience here in Bedford.