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Caring for a dad with dementia, blindness and hearing loss

This week’s storyteller is Jacky.

Another urgent call from mum but fortunately this one is less of a crisis than many others. Dad has walked unaided and sat himself in a low chair from which neither he nor mum can move him. When I arrive dad is singing a hymn at the top of his voice. “Having a happy day?” I ask. He replies with a lopsided grin: “Yes, but I think I’m in trouble. Something to do with chairs?” I have to smile.

My 93-year-old dad’s situation is hard. He is blind, very deaf and has advanced dementia. It’s also very tough on my 89-year-old mum who is his primary carer. Mum was ready to find him a home but we have instead successfully employed a live-in carer to help on a daily basis. Despite it all dad is still there at times but reaching him when he’s locked in a dark, often silent and confused world is a challenge.

Losing memory and cognitive awareness with dementia is hard enough. However if old age has already taken your sight and hearing, how you can function at all? So many bits of advice for blindness involve using hearing instead of sight; so much help for dementia involves using visual prompts.

It’s not a hopeless situation though. There are many activities involving touch, sound, food, exercise, routine, reminiscing and conversation that I’ve found work for my dad and may also help others dealing with the same difficulties.

Touch is reassuring and distracting. Holding dad’s hands or massaging them with hand cream, and giving hugs to say hello and goodbye help to make my presence felt. Gently stroking dad’s shoulders when he’s agitated reassures him and helps to calm him down. Because dad is blind, explaining to him what we’re about to do before we touch him is important as it prevents a sudden shock of the unexpected. We play a game which involves giving him items that he can feel and guess what they are. Leaving unbreakable objects on the table in front of dad when he’s on his own distracts him from getting restless or even removing his clothes.

Sound management relieves stress and gives pleasure. Dad becomes stressed by a lot of noise as he finds it confusing, yet he loves to sing, loudly! His favourite songs are from his long years as a man with a strong Christian faith. He enjoys listening to CDs of his old music for a short time. Dad used to play piano and a mouth organ and a portable keyboard did help to reduce his boredom for a while. My brother bought dad a mouth organ for his last birthday and we keep it within his reach so he can play it as and when he likes.

Food is a treat. Dad still really enjoys his food. Regular cups of tea, biscuits and sweet or fruit treats help to break up the day’s boredom. Meal times and snacks often serve as useful distractions.

Regular exercise is good for mobility. Exercising keeps dad occupied whilst also keeping him mobile. Mum can’t safely go for a walk with him as she doesn’t have the strength to help him up if he fell. I often walk with dad around the room and when the family’s not around the carers make sure they go for regular walks with him. On a good day, when my dad can understand the instructions, he enjoys simple arm and leg exercises.

Routine makes life easier. The family tries to keep dad in the present as much as possible with a regular, daily timetable. Mum likes keeping to a routine so this generally helps both my parents.

Reminiscing is great for communication. Talking about shared past experiences is the easiest way for us to communicate with dad. We can guess what past event he’s referring to and fill in the gaps when his memory fails and he misses out words. He’s especially bad with name recall. Dad’s carers often ask him about his favourite cars, holidays, his work and his childhood – subjects that can often be sufficient triggers for dad to start telling a story. Even if we can’t always understand what dad is saying we make sure he knows we’re listening and engaged with him.

Conversation matters. Everyone who addresses dad introduces themselves and lets him know where they’re sitting in the room and who else is there. Dad has a talking watch to remind him of the time and date and we always tell him about the weather. We talk to him about my parents’ house as often he’s convinced that he’s not in his own home. We make sure to tell him about friends and family and snippets of news so he feels constantly involved in day-to-day goings on. Dad doesn’t always remember all of this but it gives him the dignity of a normal conversation and occasionally he mentions something later on which he has retained.

The dad I once knew has faded, although I do still see flashes of his indomitable sense of humour and character from time to time. Sometimes the sadness of his situation and the demands of supporting both my parents are exhausting. Dad often prays “I am ready to join you God” but until the day his prayer is answered I value and work at the time I have left with him, trying to bring simple pleasure, connection and happiness into his life.

I deeply respect and love the man who was, who is still, my dad.

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