I have just spent five days in a hospital ward with my mother who lives with middle /late stage vascular dementia. Her fifth admission over a period of eight months. Under a year ago, her first admission, it was evident a worrying lack of dementia care towards her. I contacted the hospital's CEO and aired my grave concern , not just as her daughter, but as a advocate of better care standards for those living with dementia in care homes and hospitals.
The CEO, thankfully, did not dismiss my worries and agreed much more needed to be done to cater for those living with this disease in hospitals. He invited me to talk to a group of lead nurses and dementia advocates. I invited two representatives from my dementia support group to attend with me and we eagerly discussed the needs in hospitals to deliver better dementia care standards. We spoke in length many issues for those with dementia on admission and during ward stays. It felt like we were making small progress for better dementia care practices. When I returned six months later it had improved. Some time later on another admission it was like I had stepped back in time. I documented again , many serious care failings all of which were 'basic ' care needs. I wrote a strongly worded letter to the CEO and his response was met with much dismay and a swift, detailed reply, pledging to do more for my mother and patients with dementia and a huge, heartfelt apology.
Whilst caring for my mother on her ward, I was met with much frustration. Her condition is at a stage she can not communicate in sentences and does not know how to tell someone when she in pain, nor can she move to reposition herself. Without being disrespectful as many may think who don't understand the disease , the person in front of me I see as a adult 'child'. Someone dependent on their carer, helpless in relaying their fears and needs and this is a role I and her full time carer , willingly take on. Her hospital stay was met with a catalogue of preventable failures of care. . No 'Nil by mouth ' signage above her bed before her procedure. To which, I had given her a few sips of tea unknowingly. Seven hours in between pad changes , no time to encourage patients to take fluid. No care assistant to assist with food intake when needed and not just my mother - a patient opposite mum in much distress, being left for over 35 minutes when calling out for help to go to the toilet in distress. When no help came nurses telling her they were 'too busy' and could 'she wait ' or 'do it in her pad' - I assisted the frail old lady, taking her by the hand and saved her dignity. My mother's supper was forgotten, resulting in me doing a merciful dash to the kitchen or she would have gone without. A rehydration drip was missed during the night and a day nurse confirmed she had raised a complaint. A nurse giving mum two lots of (two) paracetamol until i queried it and he apologised - knowing mum suffers with kidney disease, a 'sorry' didn't fill me with much confidence, understanding human error can happen , I felt strongly this needed reporting.
I received a e mail from the CEO telling me they agreed my mother's care was not given the attention she needed in that particular ward and it was promised, more would be done to assist her with her care needs whilst in hospital.
My mum's going to be ok. I know as my capacity as a advocate for better care standards and as a carer , I raise the bar very high to ensure any failures of care will be raised as so to implement better standards of care for those living with dementia. My mum will not be discharged from hospital worse than she went in as too many dementia patients, in many documented cases evidently do. She has someone to be her voice and ears and I know she is one of the lucky one's. But what about the rest of the souls living with middle/ late stage dementia in hospitals, who have no one sitting beside them. What's their fate ?
If dementia care isn't highly prioritised in ALL hospitals then, its not good, not good at all.