There is no easy or short answer to that, but overwhelming I have replied that you 'just do'. Watching someone I love with all my heart live and die with dementia has been the most harrowing experience of my life. I would say, however, that caring for someone with dementia is also perhaps one of the greatest privileges a human being can ever have.
The person living with dementia doesn’t choose to have the disease, and as it progresses and they lose more and more control over every aspect of their body and their life, they do not choose to share that journey with you, they ultimately get no say in it. You become part of something unique and so very personal to the person living with dementia.
You have the chance to make a huge difference to their quality of life, fight for the things you know they would want, put a shield of strength and love around their vulnerability, and ultimately hold their hand and live in their heart during the hardest fight they will ever have.
It isn’t a task for everyone, and some people just cannot begin to cope with the reality of the situation their loved one is in, but for those who remain by that person’s side through thick and thin, their lives are changed forever.
For me this change is very much a positive thing. Whilst I would have given anything for my dad to have lived to a ripe old age, fit in mind and body, once his dementia kicked in we had to live with the hand we had been dealt. You can sit and feel pity and sorrow, injustice and fear, or you can just get on with it, absorb it, make every day that person lives the best it can be and when they are gone, help others to understand what dementia is, how they can prevent getting it, and for those for whom that isn’t possible, make THEIR lives the best they can be.
I learnt more about humanity, compassion, empathy and love in those years with my dad’s dementia than I believe any other experience in life could have taught me. As I have touched on before, dementia strips life back to the bare essentials, and reminds you time and time again to cherish the simple, celebrate the ordinary, and continually find a new kind of 'normal'.
As a disease, dementia is cruelty personified, but for those left behind when the dementia has claimed your loved one, there are priceless lessons learnt, invaluable experiences to share and a wealth of selflessness still to give.
If someone you love currently has dementia, I really can only say that you do get through it, even if most of the time you think you never will. You’ll laugh and cry, and when they are finally at peace, you will still just want to sit and hold their hand and have a cup of tea. A simple but amazing life.
Until next time...
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