It was bright, fresh, and clean, with no tell-tale “smell of wee and cabbage”. Residents were smartly dressed in well-laundered clothes, and looked cheerful and relaxed. Yes, it was expensive, but no more than others I considered (in such parts of the country, no residential care is cheap!); and, crucially, it was not the decorative surroundings that impressed me - the atmosphere felt right.
The latter immediately struck a chord with me, because mum had for years been obsessed with collecting soft toys, amassing a whole spare-room-full, which she would religiously “put to bed” each night. These toys instantly told me that the staff understood and respected the emotional needs and perceptions of people with dementia. It was evident that everything in the home was geared to the comfort and well-being of the residents – it was first and foremost, their home.
By autumn 2015, mum had been resident for almost twice the national average stay - a testament to the quality care she received. Dementia is a degenerative syndrome, so of course her condition deteriorated in that time and will continue to do so. But having experienced so much trauma in the preceding decade, when I had struggled to keep her safe at home, I knew she would otherwise have come to grief and was immensely grateful to have her still “with us”.
People often ask me, “Is she happy there?” - sometimes in front of her; please don’t! Firstly, there’s an underlying judgmental implication that if she isn’t, I must have put her there for my own selfish convenience, while there remains a happier alternative elsewhere. Secondly, the honest answer is too complex. Although she can still experience pleasure and has good days (as well as bad), I can’t say mum would be truly “happy” anywhere now as a general state, given that she has no context of memory and relationship, and constantly yearns for long-dead parents and the home of her childhood, which can never be restored. She was already tormented by such feelings when still living in our own house.
Paranoia, delusion, hallucination, and confabulation are her dominant symptoms of dementia and often result in distress, because to her everyone is a stranger and potentially means her harm. Rather than “happiness” therefore, I find it more realistic to think in terms of peace, contentment, and security – which the home provided.
Continuity is key. In 2011 mum had first moved into the residential dementia wing, but by 2014 she was no longer independently mobile and needed continence care; she was able to move seamlessly across into the dementia nursing unit – at that time, a small wing of 12/13 residents, with four care staff (including a nurse) on duty by day and two at night. This is a very good staff/resident ratio and made for excellent care. As a regular visitor, I knew all the residents and staff and they knew mum and me; they became, in effect, our family.
As mum’s condition progressed, there were times when she seemed to be fading, and plans for end of life care were made. Although she rallied, I prepared myself, confident in the belief that when the time did come, both of us would be supported by familiar people, who cared about us, in peaceful, familiar surroundings.
But just before Christmas 2015 that confidence was brutally shaken. A crisis brewing throughout the autumn came to a shocking head - and I learned that, even if you have found a good home, vigilance must never be relaxed…