What's happening Stories Alison's Story My Dad Tommy had been suffering from a series of falls and infections when he was admitted to hospital last summer with an acute infection and cardiac arrest. It had been very stressful but we just about managed. However we weren’t at all prepared when he was also diagnosed with Lewy Body Dementia. That’s when we were put in touch with Trinity. When Dad was first discharged, the Wandsworth Care Coordination Centre based at Trinity helped us sort out all the care Dad needed to come home. No one tells you in hospital what you are going to need but they sorted out carers, funding and arranged for a Marie Cure Night Care Nurse to sit with my Dad overnight so I could sleep. They provided us with advice and reassurance over the phone during those early days which helped alleviate our worries. Crucially, they referred us to Jeannie. Jeannie is one of Trinity’s Specialist Community Dementia nurses. She has been amazing! We didn’t know what to do when Dad was first discharged as although he’d only recently been diagnosed his Dementia was already at an advanced stage. He was frightened and agitated and refusing to eat or drink. He could be awake for days at a time and we were all exhausted. I was worried Dad was unreachable but Jeannie helped us learn to speak his language. At first we thought everything was caused by the dementia – the agitation, the throwing things - but she explained for the first time that there could be a cause for his behaviour. What a revelation! It meant we could finally communicate again. She told us to think about what we were doing and the effect it had on my dad. We discovered for instance that sitting really close to him while we watched TV had a calming effect. She encouraged us to identify things that upset him, such as sudden movements, the radio, or loud voices and things that calmed him, like children’s films, being shaved and wearing his favourite hat . It’s a moveable feast and we can never get complacent, but it has definitely improved things. When changing our behaviour doesn’t work, Jeannie explained that normally indicates an infection. This means we can gauge when an infection is coming and seek treatment. If he needs a prescription, Jeannie rings the GP and sorts it all out so I can just go and collect it which is one less thing to worry about. Jeannie also acts as an advocate for my Dad. She fights his corner to make sure he has the best quality of life possible. Even if his behaviour is distressing, she makes sure he is only treated for his symptoms and isn’t over medicated unnecessarily. While at times we disagree, it’s reassuring to know my Dad has someone else looking out for him. It’s not just me who has benefitted from Jeannie’s help. The carers have been able to learn on the job from Jeannie and many of them have won Carer of the Month awards from the agency for how they have cared for my Dad. Sometimes if we are unsure one of us will call Jeannie or one of the other community nurses for advice on the 24/7 helpline. They listen and reassure us and help us make the right decision during times of crisis. Personally, it’s been tough and stressful juggling my job with my Dad’s care. However I now receive counselling from Trinity’s Patient and Family Support team which has been just fantastic. My counsellor Pat allows me to talk about my true feelings without judgement. She calms me down and helps me take a deep breath and put things into perspective. I don’t know what I would have done without Trinity’s help, I am truly grateful. Even though it’s the hardest thing I have ever done, with their support it is still a pleasure to look after my Dad. There are moments when we get a little light from him and that’s when we know it has all been worthwhile.