This blog gets some mighty powerful comments….
My 92-year-old mother with advanced dementia still lives at home and attends an Eden-accredited day centre. Six weeks ago I received a call from the acting manager to say they were finding my mother’s behaviour very challenging and wanted to bring in their ‘Dementia Behaviour Management Advisory’ team to assess and advise. Would I agree? ‘Yes,’ I said, ‘on the proviso we wait until the manager returns from her extended leave’. In the meantime I consulted my mama’s GP, who advised that the antipsychotic drug, Zyprexa, is generally prescribed for dementia-related anxiety. It’s also a drug prescribed for schizophrenia. I was concerned. My mother takes minimal drugs and I certainly wasn’t prepared to ‘drug’ her for the convenience of day centre carers.
I am very wary of using anti-psychotic drugs in cases of dementia. They blunt mood, thought and behavior and often obscure the real source of distress. I think Dr. Al Power agrees with me about this.
It seems to me, Dr Bill Thomas, that our elders with dementia [whether in nursing homes or still living independently] are so universally ‘controlled’ with antipsychotics and antidepressives that nursing staff and day centre carers no longer know, understand and witness true and unadulterated expressions of dementia.
What are often described as “problem behaviors” are actually unmet needs. It is our duty to understand the individual and meet those needs.
Do your accredited day centres only like to take people in early stages of dementia? The easy stages? You may not think this is an issue. But when someone like my beautiful mother, Clare, expresses common symptoms of dementia, your Eden-accredited staff apparently take fright. They seem to think her behaviour is very unusual. They don’t know what to do. Their recourse is a specialist ‘behaviour’ team, which I suspect and know will result in drugs.
When approached six weeks ago, I was given the ‘ratio’ story – i.e. we’re not funded to provide one-on-one care.
I do not know where your mom is getting day services but I will say, Eden or no Eden, your mom (and you– if your mom no longer possesses decision making capacity) has the right to decide which treatments will accepted and which will be rejected. I suggest a more in-depth conversation with your mom’s caregivers. They may be genuinely stumped and be searching for more expert guidance.
Clare has a weekly visit from an Irish Catholic nun. I have watched these visits with intrigue. The nun pulls up a chair, very close to Clare’s, and simply yarns with her. Tells her what’s been happening in the parish, sometimes in minutiae, dramas included. All the time she’s completely ‘there’, focused on Clare, eye to eye. She never asks open-ended questions. C listens intently, and there is always a point at which C contributes and engages. ‘Oh yes… I know what you mean,’ she might say wistfully. The nun, who’s elderly herself, is wise to the core. In these weekly exchanges over the last three years, right through the changing machinations of C’s dementia, I have never, ever seen Clare distressed or difficult. On the contrary, she rises… on all levels. She becomes her essential core. It is truly a beautiful thing to observe. And it has shown me, as carer, how to be.
It is truly a beautiful thing to observe. Real care is stunningly beautiful.
Of course, from a funding and resourcing perspective, it’d be wonderful to have a wee collection of souls in Eden-accredited facilities with ‘perfect dementia’ – i.e. early stages of dementia. But if this is your Eden reality, how are primary carers, like myself, supported? Or are we and our loved ones to be forever in a kind of wilderness?
Would appreciate your thoughts.
We lack the funding we need because of our society’s prejudice against aging and older people. We do not invest in them because we do not see value in them. This is the first and most difficult thing we must change.
I would love to hear the further thoughts of regular changingaging.org readers in the comments.