My Mother is contentedly demented. Bedbound, near blind and doubly incontinent. She must be fed, cleaned and changed by others. She is no longer capable of rational communication and has no understanding of her situation, no power to decide her fate. No ability for liberty.
This has been a generous gift.
She was a fiercely independent woman. An ex-teacher, single Mother and bloody-minded, domineering, violent, loving, generous, funny, talented, self-centered, bullying, loyal, manipulative, clever, creative, caring enigma. Only animals proved capable of permanently living with her but she had a very wide circle of devoted friends, until she reminded them of mortality and incapacity at least.
I respected her, liked her sometimes, felt a filial duty to her. But I didn’t love her. I do now. I see her almost every day, often with my best friend, and I laugh. My Mum and I laugh. A lot. We sing. She can remember the words and tune to so many songs but can not assemble a sentence or retain a thought on her own. At Christmas, I feed her. I used to take her out in the wheelchair sometimes but the dementia robbed her of positional awareness that made her motion-sick. She howls in distress when she is moved partly owing to the falling feeling from this and partly because of fear through lack of understanding.
The carers in her Nursing Home are heroic. Young men and women on minimum wage, cleaning shit off old people all day. Being grabbed, scratched, pinched, sworn at and sometimes treated as servants, they maintain a calm, compassionate, careful treatment of the human wreckage they look after. I am humbled by their devotion. Examples of their amazing care include: two girls singing to my Mum when they change her because she will automatically join in instead of wailing in distress. Endless patience and the ability to see a human when answering the buzzer for the 144th time in an exhausting 12 hour shift. Calling in as they go past to say hello, repairing her stuffed toy when she damages it, never losing patience when she pulls out her soiled pad in confusion and compassionately guiding us, the relatives through ‘the process’ of final care. They make relationships with life-limited men and women, see them die, clean their corpse and attend their funerals.
To see this demonstration of the very best of humanity in these acid times is a gift of perspective.
The gargantuan gift of Mum’s dementia is the manner of her dying. She aggressively maintained that she would never be “put in a home”, she would “walk into the sea first”. I unkindly reminded her that she couldn’t walk that far and couldn’t find the sea anyway. When she lost her mind, she lost an awareness of her situation. To begin with, we had distressing conversations when she asked if I had “come to take her home” but she soon lost the concept of home as her mind melted away. The ability to render her to professional nursing and domestic care lifted the burden I had been under balancing her mounting incapacity with her ill-tempered refusal to accept carers since her Doctor contacted me at work as she kept trying to make appointments for her dog at his surgery. The subsequent diagnosis of mixed dementia (vascular and Alzheimer’s disease) was unsurprising but unhelpful. I had already cleaned the dog biscuits out of the washing machine, been to find her car that she lost in a car park, been called in the night to ‘fix’ the broken central heating by turning it on, placed reminder notes everywhere, bought a calendar clock (“when are you taking me to the Doctors?””Tomorrow Mum, Tuesday””What day is it today?””Monday Mum, its on your clock!””Yes, but I don’t really know what that means”). Endless worry, trouble, guilt, resentment and mourning. Finally, she had a ‘stroke’ and became completely infirm. The Hospital insisted on discharge to 24 hour nursing care, surprised when I was relieved and grateful.
My Mums dementia has allowed her to slowly slip away, to enter oblivion in minute stages, unaware. It has ensured professional care and safety. It had allowed me to come to terms with her death and given me time to prepare.
Most of all, it has given me time to fall in love with the best parts of my Mum, to have happy times, to learn about her life anew (by clearing her effects and going through every drawer, letter and object). To understand some of her contradictions, to gain a new respect for her achievements.
She is still with us, just. More in (ravaged) body than soul, but still here, still slowly leaving.
For us, dementia has been a gift that keeps giving.
For others it may be a cruel torment, but that is not automatic. Do not fear dementia. As with all diseases, especially life-limiting ones, it is the management that is the main determinant of its experience.
And thank a carer of the old and infirm, they are amazing.