'Living with' dementia

The collective wisdom around dementia is that the term 'living with dementia' should refer absolutely and solely to the person with the diagnosis but those of us sharing that life also 'live with dementia' on a daily basis and perhaps that should be recognised more than it is.  I don't want to be controversial but our lives have also been turned upside down, we too are confused by what's happening to us and to our relationships (not only with our partner who has that all important diagnosis but also with friends and relatives), we never quite know whether we're going to understand events on any given day, we never know when we wake up whether it's going to be a good day or a bad day.  In other words confusion reigns in our lives too and, if we are totally committed as most of us are, there is no escape.  Someone said yesterday that, although her husband shouldn't be defined by his dementia, as a couple they are and I too find that.  We can no longer be the people we were, we can't so easily be the welcoming hosts, we can't be spontaneous, we can't just drop everything to help.   All those things that we once were are no longer available to those who know and love us.   Everything that used to define us as friends/parents/grandparents/daughters/sons has changed beyond recognition.  New friends don't see the difference because they don't know what we were like before but old friends and family do (and the fact that they are still there for us is very impressive whether they think it or not).   So life has changed irrevocably not just for Ash but for Jake, for me, for the 5 year old and for my mum and because of that I think it's safe to say that we are all 'living with dementia' whether we admit it or not.  I'm not saying this is a bad thing you understand but it is a fact and the way we talk about it won't alter that.

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Lesley said…
You are absolutely right, Jane, and it should be more widely acknowledged that dementia, and in fact any chronic or life-limiting illness, affects those around the loved one with the diagnosis to a huge extent. The physical toll is often huge, the mental anguish extreme and, as you say, the adapting that has to go on can necessarily turn you into someone other than you would choose. Walking that tightrope of trying to remain true to yourself whilst still supporting the person you love is exhausting. That's why this kind of blog, where people 'get it' is so valuable. Hang on in there, we're with you!
Jane said…
that really is the nice thing about writing this blog. The people that read it do seem to 'get it' and knowing I'm not the only one makes such a difference.
Michael said…
Carole, me, our daughters/partners, our grandson, my dad, my mum, my brother/sister in law and all rest of our family are living with dementia! With love and positivity we will try our very best, all of us.