When a person with dementia ‘comes out’ about their diagnosis, and openly admits they are living with the symptoms of, and diagnosis of dementia, there are a number of reactions and responses. The person with dementia (PWD) is thrown into complete turmoil; anger, ‘why me?’, surely it can’t be true, let’s get a second opinion, grief, and many other things. Coming to terms with such a diagnosis is a very difficult thing for every family facing the arrival of Mr Dementia.
The responses of others varies. Some are over protective, immediately wanting to help you, take over for you, and try to love you more. Others openly suggest or accuse you of lying; if you can still speak and function, then you can’t have it, or maybe you are lying for notoriety or sympathy. Many others say, ‘but I forget things too’, or ‘my mother/father is like that’. Then if you remember something in a conversation, some say, ‘see, you can’t possibly have dementia’.
My mother said when she found out I had been diagnosed with dementia, ‘she felt an anger she had never felt before, one that eventually subsided, but which left her with a deep, deep sadness.’
My youngest son said, ‘but mum, that’s a funny old persons disease!’ None of us had ever considered younger people are also diagnosed with dementia.
My husband said some time ago, ‘I know I am losing you, and I am afraid of what the future holds.’
In public places, like retail outlets and cafes, if you get confused or forgetful about what you are doing or ordering, then you get the ‘sour lemon look’, from people young enough or smug enough to not realise they too might be diagnosed with dementia one day. At a forum recently, even the carers of people with dementia would suggest to some of us we didn’t have it, even though they had heard presentations from PWD about how much this hurts.
Many subconsciously blame the PWD for their changed behaviours, rather than the disease.
Many forget it is a terminal illness, and we are struggling to paddle to get through their days.
The symptoms of dementia can sometimes get in the way of compassion, and often the PWD is ‘blamed’ for their behaviours; for being obstinate, or difficult, or for refusing to acknowledge they have dementia, or for not accepting help, or for mistrusting those who are trying to help, or… or… or… there are so many times I read or hear about the carer blaming the PWD, not the symptom of a terminal disease, for ‘their’ troubles. In many cases, PWD are also blamed for the changed roles of family members as they have to take on the role of carer.
It takes time for carers and friends to see it is not us, but the disease.
The overly protective responses are the easiest to cope with, as at least these people don’t accuse you of lying, they don’t blame your changed behaviour on you, and their reactions are truly based on love and compassion. It is a normal response when a person you love is troubled or ill to want to help them.
Earlier this year, I had a few days of trauma following being bullied by three people at a family function. It was almost teenage school yard gangster style, two in a smiling passive aggressive way, one person openly nasty and in front of others. Thanks (!!) to Mr Dementia, I am no longer able to hold my own in situations like this, and consequently spent a few days crying into my hankies. I am over it, and as always have learnt some life lessons from it.
One very special friend visited me the next day and held my heart gently in her hands… no words or questioning, simply sitting with me in love and friendship. This is what people with dementia need more than anything else – people to hold their hearts gently and lovingly, no questioning, no-one saying things like ‘but I’m like that’ or ‘you don’t have dementia’, and especially no-one blaming the person for the symptoms of the disease.
Ps. Don’t forget, voting is open for the The Best Blog 2013 Competition… you can click on the image on the right.
Pss. My blog is called: Creating life with words – Inspiration, love and truth