People with dementia face an identity crisis – who am I – who will I become? One major fear is the loss of self associated with dementia, and we face an existential crisis of identity. Our sense of self is shattered with this new label of dementia. Who am I, if I can no longer be a valued member of society? What if I don’t know my family, if I don’t know who I am and who I was? The inner fear of the loss of self, and loss of identity, is exacerbated by the outer stripping away of who we once were. Dementia brings a fear of the future, of decline and of death in a state of unknowing. Many people with younger onset dementia can no longer be defined by their work; therefore they are less valued by society, and often by themselves.
Exclusion from many activities brings further isolation. The other people affected are their families, especially parents and children for those with younger onset dementia ; it brings a new level of responsibility and caring to them; for parents it does not fit the natural order of life, i.e. they are meant to decline before us. It affects our intimate relationships, our sexuality and our connectedness. Seek to understand what is happening to a person with dementia – not from a clinical perspective, but from their personal inner experience. Get to the heart of the matter and ask the personal questions before getting to the ‘fix-it’ topics items on your agendas. Define people with dementia by who they still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties, rather than by the symptoms of the disease – forgetful, confused, aggressive, angry, odd behaviour, absconders, mute or refusing to communicate.
Focus on what a person can still do, rather than the deficits. Many people diagnosed with dementia have a terrible fear about their future, and how it will feel to die with this disease. An interesting comment I continually hear from people with younger onset dementia is when they leave work, because of the symptoms of dementia, they do not get the usual farewell from their colleagues and employers. This happened to me, and was the only time in my working life my contribution was not acknowledged, nor was I farewelled in the usual way. This type of behaviour contributes greatly to impacting our sense of identity, our self esteem and to feeling valued, and isolates us further. The dementia train is one wild, and occasionally wonderful ride, but for me, the sense of losing my identity, and the isolation are perhaps the roughest on the journey.
Well said Kate – you expressed everything I went through. And in fact what I STILL go through when I face the reminders of things that I have lost. They might not hurt as much as they did 15 years ago, but they still hurt.
I just typed up a lot and then deleted it – I’ll send it to you via private email – about your blog post. So keep an eye out for the private email. I’ll have to get a big more energy together before I can email you ……
But in the meantime = great blog post …… thanks
looking forward to the email xox
I so empathise with the lack of acknowledgement at work. My darling sister who was in charge of 150 staff at a prestigious museum received no official send off or appreciation. Fortunately, later on, a group of staff sent her a lovely photograph album marking all the important occasions in her career (including meeting royalty!) along with staff members’ notes on their experience with her. (all very positive of course — she was much loved and respected). It would have been good if they had managed to give her a wee send off while she was still cognizant. Such a tricky situation when people don’t fully understand until it is too late.
While people can still talk and share their experience I URGE family and friends to spend time with those with dementia. All too quickly the opportunity is no longer there.
Kate, with your blogs and the work that others are doing, eventually people will realise that each person with dementia is an individual.x
Unfortunately Kate, people choose not to acknowledge many things in peoples lives that are significant through fear, through not knowing what to say, through just plain lack of courtsey and compassion. It is not that that person isn’t valued anymore, it is a case of “out of sight out of mind”. Keep going my friend your thoughts and written words are invaluable and a direct reflection of you and your personality
And in all of this Kate – the most important people will not forget or lose you. Your expressions of insight are invaluable for those who care for those with Dementia. Keep writing!
I hate what is happening to you (us) with our train ride, but your blog is incredibly important as it tells people how you feel, instead of leaving it up to them to decide how you feel. I am in awe of your courage and tenacity in the face of such adversity.
BUB.