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‘Never was it more important to ensure that we found ways to communicate’

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Words are so precious and the most precious for me were those my Dad spoke in the last week of his life.

Words are so precious and the most precious for me were those my Dad spoke in the last week of his life.

We had been dancing around the end of his bed to his favourite music; dad was frail, bed ridden and unable to communicate verbally. But he seemed to enjoy the music raising his eyebrows in time to the song. As our dance came to an end my daughter and I took a bow and as we looked up my dad mouthed “wonderful”.

This one word must have taken all the effort and strength he could muster but oh how glad I was to hear it.

Before the Alzheimer’s, my dad had been a real chatterbox, in fact my mum would often have to drag him away as he would sit and talk to anyone who would listen to him for hours on end! To see someone so dear to you lose the ability to hold a conversation, start to forget words or repeat themself becomes painful to watch. In fact his favourite response at that time was “my brain is addled”.

As his Alzheimer’s progressed, Dad’s cognitive decline increased and he lost the ability to communicate his needs verbally. Dad was no longer able to tell us if he was thirsty, hungry or in pain. In fact as he reached the advanced stages he wouldn’t have even aware of the need to eat or drink.

When somebody can’t communicate verbally, the person caring for them has the responsibility to recognise and anticipate their needs.

This takes time and is not something that can be learnt over night, which is why it’s so important to involve the carer and family when planning any form of care for someone with dementia as they know better than anyone what their loved one needs.

Patience is an important quality when caring for a loved one with dementia. Dad did not like to feel rushed, whether this was giving him a drink or feeding him his meal. He responded well to gentle words “just one more sip” or “one more spoonful,” short sentences spoken slowly often worked best.

Subtle changes in Dad’s behaviour often indicated that he was unwell or in pain. Signs such as constant fiddling with his bedclothes, raising his arms in the air like he was reaching for something and, when he still had the ability to talk, chatting all night to an imaginary person, all indicated that he was becoming physically unwell.

Intuition or “gut instinct” told Mum that Dad was not well and after a GP visit at home he would be diagnosed with a chest infection, sadly a diagnosis that recurred frequently as the disease advanced.

As Dad’s Alzheimer’s progressed to the end of life stage, never was it more important to ensure that we found ways to communicate our love to him in everything we did. 

When Dad reached the point where he was unconscious, he stayed in a hospital bed at home in the dining room. To fill his day we would play all his favourite tunes including his favourite song “Time to say Goodbye”. One of us always held his hand and we made sure he was never alone. We talked to him, told him we loved him and kissed him as much as we could. We would massage his legs and hands, using touch as our way of connecting with him and showing him we were there.

Love does not need words alone; love can be shown by the warmth of your touch or by a smile on your face, I hope Dad felt our love right up until the end.

Sally-Ann Marciano is a consultant at Skills Utilisation Project, Bristol

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