The ups and downs of living well with dementia

reaching-the-top-of-a-mountainLiving with, and being an advocate for others also living with dementia is one full of highs and lows, and I wrote the following sometime before 5 May 2014;

I’m feeling distressed, wondering if the advocacy results I’m trying to achieve is worth it. Not so much worth the outcomes, for people with dementia, but worth it in light of the impact it has on my personal relationships, the time we spend together… Should I keep going, or give it up and focus on the time we have left? This is, I suppose, the million dollar question. But what to do, how long should we wait or keep going the way we are before the changes of dementia take over, or at least, make it too difficult or traumatic for us to have a good life together? I feel confused, I know things are changing, and that we will eventually run out of time, but when? If I give up my ‘work’ now, will the downhill slide be quicker, and start sooner?

So many questions, and the only one who can answer them is Mr Dementia. We’ve watched others on the same train trip, and each and every one is different, Some being taken over by Mr Dementia much sooner than others. I wonder how much intellectual and academic reserve I have left, how long it takes to run out, if continuing to study helps it last longer, keeps me functioning ok for longer, or if one day, it just stops dead. And the light switch goes off, my ability to paddle disappears, like my ever disappearing world? Sometimes the days of non sensical randomness and delight seem almost over, I know that, and it is devastating. I know my dear husband can see it happening, perhaps even more than I can.

After finding this on the Notes app of my iPad whilst flying home from Puerto Rico, I responded to it with this:

It seems this is a blog in progress, as I’ve just found this which I must have started it a few weeks ago when I had been feeling like all my energy and efforts were not making enough progress, or maybe I has just been feeling tired and burnt out. My dear husband and I have just spent five days with my Dementia Alliance International (DAI) colleagues and friends, and others we have now known for some time in the global dementia community attending ADI2014.

We both commented as we were getting ready to leave the hotel that we had not felt so supported and accepted since ADI2012 in London, and it is the power of doing truly meaningful and engaging activities, with like-minded people that offers us real support, not sitting around in a ‘support group’ discussing our troubles and ruminating over the negative parts of living with dementia.

Attending ADI2014 in Puerto Rico was even more fulfilling, as we were more ‘normal’ than last time, due in part to being part of a global organisation with an exhibition booth and all of giving presentations in part about living well with dementia.

It placed people with dementia well and truly back onto the stage of living well, refusing to die upon diagnosis, refusing to be sufferers or victims, and no longer will there be ‘about us, without us.’

We broke down barriers, smashed myths, and collectively reclaimed our rights, whilst at the same time empowering others to live well with dementia.

As with everything in life, there are many ups and downs, and my blog today definitely shows the highs and lows of living with dementia, and of trying to be an advocate for a group that is stigmatised, discriminated against and still very much marginalised and excluded.

One might have thought at ADI2014 we had almost reached the final tip of the mountain, and yet, now is when the real work begins…

12 thoughts on “The ups and downs of living well with dementia

  1. Pingback: Suffering is optional – Living Beyond Dementia™

  2. Pingback: Suffering is optional | Living Beyond Dementia™

  3. Hi Kate,
    Your blog today moved me to tears. Your blog is so inspirational and I have nothing but admiration for your drive to empower and enrich other people’s lives with your hard work and personal experience. Don’t underestimate the power of your work – and how it reaches out to help others too. My sister has early onset AD and is now in a residential home. It is hard for her and for us all. Reading your blog is like having someone there ‘who knows’… and there is a comfort in that,, as well as a push to ensure that life doesn’t just ‘stop’ because of it, but that time and energy (and fight) is needed to make sure life is the best that it can be. You are the only one who can decide what your next steps are with regard to your work and advocacy versus personal family time – I just want you to know that all that you have done (and blogged) is appreciated. Thank you. x

    • Hi Clare, I am so sorry to hear about your sister, but glad this blog helps you even a little bit with understanding what it is like. Thank you for sharing, and for your kindwords. Hugs xox

  4. Well done for being so honest, so brave and inspiring Kate. Yours is the most enlightening blog about dementia that I know (and I know a few …. ) Keep paddling, please, for all of us. xxxx

    • Glad it has helped you Sheri… keep up your amazing work for this marginalised group too, and keep watching out for the rainbows, sometimes they appear from nowhere. x

  5. Hi Kate, After many years of working with people who have dementia, those who are busy and engaged certainly appear to be happier and the disease process appears slower than those who are not. At least you are giving Mr. Dementia a run for his money and I am sure your family are very proud of all your efforts. Better to live with meaning and leave a great legacy than not, I would say that the work you are doing is amazing and is certainly helping those with dementia have a voice in the future.

The only thing missing in this global conversation is YOUR voice... Thank you.

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