She was incapable of coping on her own so had come up the five stairs to the top room and entered without preamble. At some time in the night, she had removed the incontinence pants that she needed to wear until morning and had wet everything.
"It's all right, Aunty, I'll help you change."
There was no sense in grumbling at her. Her dementia would wipe the incident from her mind as soon as she was back in dry clothes and a dry bed. She had reached that stage in her decline where she could no longer live alone, so we (with Leo the dog) had moved into an unused room at the top of her house to care for her.
Her Victorian house was very large for a woman who had never been married nor had children, but from the day we had arrived, she had forgotten all the other rooms and had come to live with us upstairs - only five stairs away from her bedroom. We were her lifeline, the comfort she needed when, hidden somewhere in the back of her mind, she had been resigned to finishing her life alone.
In the beginning, a sort of routine was established as she shuffled back and forth between the two rooms ten times a day or sometimes more. She had lost her concept of time and didn’t remember that she’d left the room five minutes earlier. The night-time visits were harder to accept but were, nonetheless, taken as part of dementia. If I got up twice in the night, I just got up a little later in the morning.
All went well until the day she wrote her poem.
In it, she complained that we were living there rent-free...
Once again, something in her mind had separated things into compartments where she couldn’t relate one to another. Her ‘care’ compartment was temporarily lost in the labyrinth of other thought processes.
When I told her that I owned a house and didn’t need to pay rent, if I were there, something suddenly clicked.
‘In France’ she remembered, and I nodded. She smiled reassured that I was there for her, not for the accommodation. She then wrote that the English language lent itself to verse and that what she had written was not a reproach, although I had felt a stab to my heart when reading it.
The paper is filed away with all her other writings, a sad testimony to the effects of dementia.
I think perhaps the saddest note she wrote was at the end of her life, when she could no longer speak due to the mini-strokes she was having regularly.
She had literally just returned from two days in the hospital. I sat her next to me in her armchair and gave her the chocolate milk that she liked. It was also the only thing she could swallow.
She took up her pencil and wrote, ‘Is there anyone else in the house?’
There wasn’t, so I told her ‘No.’
With a shaky hand she wrote, ‘Where’s Mummie?’ (She wrote it that way. I write the word Mummy).
It too brought tears to my eyes and still does.
‘Aunty, you are eighty-five years-old. If your mummy, my grandmother, were still alive, she would be a hundred and twenty years old.’
She nodded as she took in the information. Surprisingly, the logic of it took away any thoughts of sadness from her and distracted her from her original thought of wanting her mother. If only it had for me...
At the end of her life – what turned out to be less than three weeks – she went into palliative care. I wasn’t able to cope with the complications linked to her inability to swallow. She coughed up 90% of what went into her mouth and the little she manage to ingest risked going into her lungs.
Needless to say, I now regret that decision.
I had already spent fifteen months looking after her, and if I’d kept her another three weeks, she could have died in her own bed.
Like most of her words and pencilled phrases, the regret will be with me until it is my turn to go.