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.
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.
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.
This diary speaks clearly of,
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.
Dementia Diary. We’ve Got To Break Her.We had all agreed that we had to accept and commit ourselves to the hope that the dementia carers would become her family
A Dementia Diary. The days that passed were full of Love, Laughter, Kindness and Exquisite Pain. Be ready to weep, laugh and, as usual, hate bastard rabbits.
Dementia Devotion - I keep thinking about beautiful Karen Carpenter who was so caught up in other people's demands that she ran out of time to save herself.
Dementia Diary Day 31 Red Squirrels, Rabbits (again) & Suicide Salad - The first news I heard this evening from the Head Nurse, was that Betty had just died
Has The Dementia Care Home Assassin Revealed Her Identity? Her right eye was swollen, almost closed and the bruising ran from darkest blue, purple to black
Dementia Diary Day 20 - Purpose, Futility & the Bastard Rabbits! Eating My Garden