When our minds send us to a desert and there is no way out.
I have a friend who told me about an acqaintence whose wife suffers from dementia. It is true that he also suffers from dementia. Not that he has it but he suffers from it. Make no mistake – when a loved one has dementia, EVERYONE AROUND THEM SUFFERS FROM DEMENTIA.
That alert and bright mind that you admired; that bright spark of brilliance that you applaud and celebrate – all gone.
While the mind of the dementia sufferer wanders in a desert that has no way out, the loved ones also live in that desert and have no way out, unless they abandon their loved one in the desert of being lost.
As a child I got lost in a sand dune. I was maybe 3 or 4 years old. I recollect my parents laughing and calling me back as I ran ahead and then my father yelling “ Stop! “ But I did not. I laughed and found it a great game and became lost in a world of sand dunes where they rolled and dove and became hills and valleys and, from being secure and safe, I was suddenly alone.
I can still remember the fear and loneliness as I ran and cried and tried to get back to my parents. But could not. My little legs were chaffed from running and my ability to get back to safety was gone. I was alone.
THAT is what came back to me when I spoke to my friend today about his mate's wife’s dementia.
How frightened she must be. How terrified she must be in a place that is like a desert, a place devoid of life. Just an endless plain of pain and emptiness.
alzheimers is one form of dementia.
I ran and ran and finally fell asleep. My parents found me and cradled me in their love and I was returned to my HOME.
When he called me and spoke to me about his mate, all I could think of was how I felt that day all those decades ago. Frightened, alone and lost.
It saddened me beyond all comprehension. That a grown woman who has lived a good life, a worthwhile life and a magnificently intelligent life could become lost in the dunes and lost to her loved ones and to herself.
It seems to me that people who suffer from dementia are like I was as a young lass – lost in the dunes.
Alone and wandering aimlessly until they finally collapse in despair and go to sleep – to die or to be rescued by someone who cares enough to search for them.
Obviously as a little tot, I was worth saving. Seeking out. Searching for.
But unfortunately, those who have dementia are lost in the sand dunes or desert, call it whatever you like. They cannot come home and get tucked in to bed and soothed with a kiss and a cuddle.
It just does not work that way.
Dementia is a cruel disease. Disorder. Whatever name you wish to give it.
It is cruel. Nasty. Unkind.
Dementia leaves you wandering in the dunes, the desert or whatever place you find yourself in and no matter what, you will be found …. But never realise it.
The person who loves you will hold your hand and seek to guide you out. But you cannot leave.
The hard thing is for the person who loves you to keep holding your hand and accept that you are in those dunes and you will never come back. All they can do is comfort you in the loneliness and love you and hope, that when you fall asleep, you pass with your hand held and your safety in their heart.
As a child, I was returned from that lonely place.
If I had dementia, I would hope that I had someone to hold my hand and keep me safe while I was there.
Knowing I would never come out.
That is the tough bit with dementia.
You cannot LIVE in the dunes with your loved one. And neither should you.
But you can hold their hand and give them comfort until they are found by God.
(Hand in the Atacama Desert in Chile)
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