The changes brought on by dementia are relentless, yet most people don’t see them as disabilities just as external symptoms. Many also think it is a mental illness, which it is not. The word Dementia is taken from Latin, originally meaning madness; no wonder we struggle against the myths!
And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties. It is a tragedy that so many just see our deficits.
We don’t intentionally change, or become mean. Speaking and thinking is more difficult with each new day. Making sense of this new world is challenging, especially when we can’t remember all the parts of it.
As our new world evolves and the old one slowly disappears, the trepidation grows. It is as if we are drowning, with everyone looking on and we are just out of reach. The intensity of our fears and grief is hard to ignore as our world slowly disappears, a world which is spinning past, taunting us to remember, to recognise it, teasing our mind in its capacity to function.
The hard drive we had is slowly evaporating. The lapses of memory are intermittent, but happening more often. On the good days we can be tempted into believing nothing is wrong when it seems as if it is just a memory loss normal for our age. The multi tasking we were so good at has gone, and sometimes we can barely cope with one function, getting distracted part way through, then forgetting what it was we had been doing.
As these things worsen we are often confronted with the ‘sour lemon look’ from people who are young enough or well enough to still feel invincible; so few have tolerance for human incapacity.
Our families and friends have to come to terms with the fact we are changing, and it is not our fault. They too are losing us, and in particular the relationships they once had with us. It is hard for them to understand, and to accept we don’t intentionally change, that it is due to the disease of dementia.
The loss and grief brought on by dementia is possibly the most difficult for everyone to deal with, as it is not caused by death in the traditional sense of that word, but through the ‘slow death’ of the person you once knew.
Good post Kate …. can I make a few comments.
Dementia takes on many forms …….. somewhere I’ve posted it …… either i a blog post or in an email but includes things like coming from accidents or encephalitis. In those instances then the memory loss is almost instantaneous. My memory loss for example happened within days ……. ie. within at the MOST 10 days I went from remembering like a normal person to not remembering how to count backwards and not being able to drink anything hot because I’d forgotten it was a hot drink and I’d burn my mouth. Then I got treatment and it gradually improved a little however it is still bad.
So some people won’t have the slow progression of memory loss and the “mourning” and adjustment for you and the family that comes …….. I had it but it came later after treatment had finished and I had to learn to accept that I wasn’t going to improve anymore.
And so did my family and my boyfriend have to learn to accept that I had changed and a new person ……. and in fact I’ve changed a LOT over the 15 years since then. I’ve changed a few times over those 15 years …. but less so over the past 5 – 8 years (guestimate). And of course the dementia was the cause of my break -up with my boyfriend (we were discussing marriage and were going to be moving in together pretty soon when it happened ……. I had already started packing my bags to move in etc……)
Also, you mentioned
“mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties. It is a tragedy that so many just see our deficits. ”
You accidently forgot to mention 2 groups – friends and neighbours. As an example, each day I’d see my pregnant neighbour and each day I’d say to her …..
“Oh Jackie – you’re pregnant!” …… and each day she’d have to say “Yes!” etc etc…..
You said
“The loss and grief brought on by dementia is possibly the most difficult for everyone to deal with” – EVERYONE is the key word …… for OTHERS to deal with.
But for the person with dementia, I think FEAR OF THE UNKNOWN is probably the most difficult to deal with. Not knowing when your symptoms will worsen, what will happen and when…….. and your treatment in the future is scary. Many people in old age homes are drugged to keep their behavioural issues in check (because behavioural issues are often a problem with dementia in final stages) and to something this is demeaning.
Me – I have about 15 other symptoms and just say I’d have to live with them while I had no mental faculties is horrific – like my 24/7 hunger but with no coping mechanism.
My fear of this type of future is why I’m so supporting of having a control over my future so that I DON’T EVER LIVE LIKE THIS.
If I can help it I’d like to die before I get like this. That’s why I fully support volunary euthanasia.
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Great comments, thanks for adding to the conversation. 🙂
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