It is not easiest thing to do. It is however something worth striving for if you are living with dementia, caring for someone with dementia or supporting a carer. Most days I find the words ‘ living well’ a helpful reminder to think beyond the disease. My dad has Alzheimer’s Disease and ‘living well’ reminds me to focus on doing what I can to support him and my mum to get the best out of their days. Some days though it is just so hard, and there are moments when I just want to throw something at anyone saying or sharing those words.
The bad moments are when
- I’m not there to give mum a hug, or don’t have a solution for what she can try next time
- the inevitable misunderstanding happens between me and one of my siblings.
- dad shares his frustration or unhappiness about living with dementia, and there is nothing you can do to make it better
- you spend too long thinking about what the future holds
- you just don’t have the energy or patience to cope with a repetitive (and to you challenging) behaviour caused by the dementia
I want to minimize those bad moments as best I can, My approach to achieving this is to visit frequently and to understand as much as I can about Alzheimer’s and dementia care. I’ve already attended a few courses, I keep a journal, I follow many dementia experts on Twitter and I have a shelf of dementia books I have read. I’ve been thinking about a qualification, and whilst I mull this over I have, this week, commenced an online Dementia Course run by the University of Tasminia. It’s already had a positive impact and as I finished one of the modules this morning one exercise really got me thinking. They asked us to complete the following sentence – My Quality of Life is Enhanced By . . . . . . .
Take a few moments to think about that. What is quality of life? What is it improved or enhanced by? I shared;
My quality of life is enhanced by having choice, and being filled with love, family, friends and purpose.
It was noticeable that many of the others taking part in the course have said similar things. The word choice was repeated again and again in the forum today, and many have also mentioned purpose, direction or goal. This is why for me at least living well with dementia can be so hard as choice and purpose can be seemingly impossible goals some days.
So next time you use the words ‘living well with dementia’ please remember that it can be the last thing someone wants to hear. Even with good days their quality of life is likely not what they want it to be. There really can be days for people living with dementia, like my dad, when it just isn’t possible to live well no matter what you do. Some of the language being used now by dementia experts and others in the understandable strive to get people to think differently seems to be forgetting that this is a terminal disease and that we cannot stop its progression. A harsh reality but one some of us need to remember if we are to cope as well we possibly can with the bad days.
I don’t though want to finish this post on a low as there are lots of highs still. We can and do create positive days and moments of purpose, happiness and laughter.
For me ‘living well with dementia’ is about creating as many good moments as we can whilst acknowledging this life is not quite what any of us had hoped it would be.