Dementia Diary
Love, Trauma and Laughter

Welcome to the continuation of my friend’s dementia diary. The diary records his experience as a carer who would not give up his duty to his mother whose life was permanently tainted the disease.

Dementia might have taken her memories, yet it did not take away her will to fight.
During my life I have seen the obviously strong succumb to illness and fade and I have witnessed such strength and determination, an inability to surrender, in the apparently frail.

The Human Spirit lives apart from how we judge ourselves or allow ourselves to be judged. It isn’t until the hour of our greatest challenge that we discover that we have such steel in that part of our Selves that we cannot reach. Dementia DiaryA Caring Dementia Diary

What is this Dementia Diary About?

The people who care for loved ones are remarkable – more remarkable when they are young children who care for parents to the obvious detriment of their own lives.

We are surrounded in our everyday lives by heroes and heroines. They walk among us, invisible. They do not wear any badge of courage other than the exhaustion in their eyes. People who know them admire their caring nature and loving commitment, yet not many believe that they should intervene.

Caring for an individual with a degenerative disease is exhausting and time-consuming. Such carers long for a different life for the loved on and for themselves. Indeed, long-term carers feel tremendous guilt for indulging such thoughts: it is feels like disloyalty in its most craven form.

It is not guilt that compels carers to perform their exhausting daily routines of care, it is Love – plain and simple.

How can you step away from someone you love and who has loved you? Of course, there will come a time when you will have to pass the care of a loved one to others, to professionals. Eventually a long-term carer must realise that the care needs are too great and that to continue to care alone is detrimental to the quality of life of the one cared for.

Many of us know the heartbreak, a real evisceration of the Heart and Soul, of walking away from the care home alone for the first time.

Finding the Strength to Abandon a Loved One to the Care of Others

My own thoughts are cursed to this very day of lying to my mother that I was taking her to a care home to recuperate for a few days. Mam had been in hospital for about five months by then and I was always pretending to take her home… in a few days’ time.

All the time, I knew that I was taking her to stay there permanently because I could no longer cope. I have never felt more like a heartless bastard than when I lied to her and left her for the bonds between her and her 'Sense of Home' to be broken.

My mother longed for a familiarity that no longer existed as her memory faded. I could no longer cope.

If I could have given up my work to care for then I would have; however, this would not have been enough. It would have extended my mother’s suffering and it would have ultimately destroyed my own physical and psychological health.

I visited my mother more or less every day for two and a half years and as her health and mental state degenerated, I hated myself for my disloyal thoughts when I would stand at my father’s grave and begged him to come and fetch her home.

Dementia Diary

This diary speaks clearly of,

  • Battles with the pain and anguish of a carer as a loved one gradually progressed to the latter stages of her dementia
  • The sense of isolation, exempt from the joys of a normal life
  • Being a carer whose exhaustion was regarded with little compassion by some
  • The power of the love and joy unexpectedly discovered in a dementia care home and how easy it was to laugh with the patients, make tea and help.
  • Discovering the healing power of holding a hand, giving hugs and laughter.

The advice is simple: You will know when you have found a good care home when you hear the sound of laughter within. 

Your instincts will tell you when you have find a good place for the care of a loved on. A good care home is a place of Love and Laughter that mitigates the trauma.

Be ready to weep, laugh and hate rabbits as a matter of principle. Below are links to the continuing diary entries.

Day 21 - Oh Bugger! Poor Mam, Another UTI.

I am without doubt a kind and gentle person; what people would call 'The Family Mug'. There’s always one in every family who’s left to do the work. I am Cinderella in drag. Read on...

Day 22 - A Mad Half Hour

Gwendolen stared dangerously at us with those deep, black shark eyes that supplant her easy nature now and then. It was very raucous with Charles threatening everyone and Gwendolen intimidating us all with a tumbler of orange juice. In the background I could hear Margaret shouting at Mary to 'Bugger Off!'. Read on...

Day 23 - She’s Gone Home to Feed the Chickens

Your Mam is much more settled now, Mike called softly across to me.  Heather sat with your mother most of the afternoon because she became very disturbed and fearful of not having food for you boys. They made a list of what they should go shopping for later. Apparently, this helped enormously in reassuring and calming Mam.Read On...

Day 24 - Magic Bullets are Only Magic for a Short While

In dementia there are no Magic Bullets. Whatever the Magic Bullet they had given Mam earlier was beginning to wear off and she moved into the world made miserable by her the disease. Read On...

Day 25 - I Can’t Even Look After My Own Money, Let Alone Someone Else's

I could have sorted out Mam’s finances in a half a day, but I took the whole day off. It was an ad hoc day’s leave, which must have caused some grumbling. Read On...

Day 26 -  Lying Is a Moral Act When It Is Done to Diminish Anxiety And Fear

Mum was pleasant this evening. Not exuberant or depressed, she was in an induced calm place but still fighting. Mam will never give in easily to vascular dementia and will fight this bastard disease head-to-head the whole way I am sure. Read On...

Day 27 -  I’ll Kill Myself If You Don’t…

Dear X, What are you doing tonight? Why not come with me to a dementia care home and meet people who are dying because of Alzheimer’s, Frontotemporal Dementia and, most of all... Read On... 

Day 28 -  Wanting Someone to be in a Blessed Elsewhere…

I am always exhausted by Friday and generally feel very unwell. There have been recent occasions when I am worried for my safety while driving – and that of others - and I’ve had to pull off the road for fear of fainting. Read on...

Day 29 -  A Self-neglecting carer is as useful as... 

The day's plan is changing yet again, and I agree with Nell that I should aim to retire not to achieve great things, but just to potter and allow everything to be completed in its own time – just pootle back and forth until an objective is achieved. Read on...

Day 30 -  Has The Mafia Assassin Finally Revealed Her Identity?

I have to admit that it was a bit of shock to see the state of Margaret this evening. Her right eye was swollen, almost closed and the bruising ran from darkest blue, through purple to black. In fact, more than half of the right hand side of her face was heavily and painfully bruised. A thin trickle of blood ran down past her ear. Read on...

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