Just as the initial two-week settling in period had passed, tempting and taunting us all to believe that Mum was improving and her stay in hospital would be short, the next three months proved to be a roller coaster of emotions, medical crises and unforeseen hurdles.
It was a period that was marked by violent outbursts, confusion fuelled by urinary infections, and the added complexity of managing Mum’s diabetes.
Dementia had taken its toll on Mum’s vibrant personality. In the first few months after her admission, once-rare violent outbursts became regular, almost daily occurrences. The once gentle and nurturing soul transformed into someone unrecognisable, prone to fits of aggression and frustration.
“Dementia has this niggling ability to amplify the impact of seemingly minor health issues”
The challenge wasn’t just in managing these episodes, but in witnessing the gradual transformation of our beloved Mum. The regular cadence of calls from the hospital letting us know Mum had been involved in yet another incident, along with the ever-increasing number of cuts and bruises, was hard for us all. Understanding that this behaviour was symptomatic of the disease helped us approach it with empathy, but the emotional toll was undeniable.
The team at the hospital played a crucial role during this period. Their expertise in handling dementia, coupled with their empathy and patience, made a significant difference. The implementation of personalised care plans, involving both medication and therapeutic interventions, became pivotal in managing and mitigating the impact of these violent outbursts.
Mum has always been, and continues to be, a very active person, who is not still for more than a minute or so and never without a duster or mop in her hand! The team at the hospital used this as a strategy to help keep her occupied and distracted when she started to show signs of anxiety. Asking Mum to help clean up after lunch or to “run a duster over” had clear positive outcomes for her (plus, the ward had never looked so clean!).
Dementia has this niggling ability to amplify the impact of seemingly minor health issues, and Mum’s struggle was repeatedly exacerbated by recurrent urine infections. Prone to them throughout her life, now they heightened her confusion, making it more and more challenging for her, which in turn resulted in more violent outbursts.
As if living with dementia, managing a move to a hospital, and recurring urine infections weren’t complex enough, Mum also continued to grapple with her diabetes. Medication schedules, dietary restrictions, and blood sugar monitoring became daily rituals, demanding constant attention and careful planning as she put up barriers.
The link between high blood sugar levels and times of confusion, anxiety and resulting outbursts was clear, and the coordination required between the different teams to address both conditions simultaneously was intricate, although not always clear to us as a family.
One of my sons, who was already battling with the guilt around not being able to bring himself to visit her when she was in the care home, was unable to bear the additional weight of this situation.
The emotions stirred by her deteriorating condition, coupled with the challenging behaviours, created a barrier that seemed insurmountable for him. For his Mum and I, his experience highlighted the need for open communication and emotional support within our family. We quickly realised that everyone deals with dementia in their own unique way, and that as a family we didn’t always express how we were feeling.
Then, in yet another twist of fate, the challenges were compounded when the hospital ward faced lockdown due to a Covid-19 outbreak. Dementia care became even more demanding as the medical staff had to adapt swiftly to the changing circumstances. The uncertainty and fear surrounding this added a layer of stress to an already fragile situation for us all as a family.
While the staff on the ward did all they could to keep families updated, not seeing Mum while knowing she still had so many challenges was difficult. For Dad, being hard of hearing and not someone who likes talking on the phone, it was especially hard.
As with any tunnel however, there was a light, and as we moved into spring, the medication and Mum’s individual care plan started to show significant positive outcomes for her. Her diabetes and urine infections were under control and the violent outbursts became rare.
She was now already one of the longer-term patients on the ward, and as her personality started to really shine through, bonds with the staff and other patients became strong. Once again, she had fought back against dementia and at times we were lucky to see small, fleeting glimpses of our Mum again.
Oh, by the way… the entire ward was sparkling clean!
Andrew Swindells is a carer
Commentary by Amy Pepper (Admiral Nurse)
Andrew touches on a number of crucial points in his blog, which are important for nurses working with families affected by dementia to be aware of. The first of these is the huge impact that comorbid health conditions can have on the person and their symptoms. We know that more than three-quarters of people with dementia will also be living with at least one other long-term health condition, but often the impact of these conditions will be overshadowed by the dementia, with symptoms attributed to that, and therefore not appropriately treated. Andrew’s story highlights the huge impact that things such as a urine infection or diabetes can have on a person with dementia, and shows the level of skill and understanding needed to successfully manage this.
Andrew also highlights the different ways that his Mum’s dementia impacted on the family, with his son grappling with the guilt of not feeling able to visit. Just as no one person with dementia will experience it in the same way as another, we must also be mindful as nurses that no one family member will react in the same way as another. It is important that we tailor our support not just to the individual with dementia but also the various family members we might be supporting as well.
What Andrew’s blog shows us is the huge level of complexity involved in supporting not just his Mum, but the whole family, through the incredibly difficult process of her admission. Careful management of the interplay between mental and physical health, an understanding of her as a person, and creative use of strategies (like the cleaning) to create opportunities for meaningful engagement and connection, allowed Andrew’s Mum to come back to a place where her distress was alleviated and her personality began to shine through.