A man whose mum has had dementia for four years said "she's still with us but we've lost the chance to say goodbye".
Frankie Smith spoke to the ECHO about how painful it is for him and his family to see a loved one live with dementia. The 54-year-old from Orrell Park said his mum Irene, who he called "the life and soul of any party", is now "fading a little more each day".
The dad called dementia "the long goodbye" and said he wants to raise more awareness of the disease and how it affects the family. Irene, who has three children, started showing "subtle" signs of dementia such as repeating conversations and losing items around four years ago.
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But Frankie said her decline started getting more noticeable throughout covid. And the family decided Irene, 82, who was being looked after by her daughters Sharon and Paula, would be safer if she had professional care. Frankie added it has been "an emotional rollercoaster" for the family coming to terms with their mum's illness.
Frankie told the ECHO: "This horrible disease is known as 'the long goodbye' and after watching my mum fade a little more each day, week and month I understand why. It is heartbreaking to see her decline. Mum used to be the life and soul of any party.
"She used to arrange coach trips up to Blackpool and street parties. We still get to see some of her personality coming through. She still looks glam whenever we see her. But now she's living with the cruellest of diseases. Even though I see her most days I don't remember the last time I had a conversation with her.
"Because of the dementia we've lost the chance to say goodbye to her. She's still with us but we're living with the grief."
Frankie said Irene at first was looked after by the Remember Me dementia day centre. The family dropped her off at the centre where she was cared for three or four days a week. The dad added the day centre and the care they gave to his mum ensured she could still live with her family for longer than they first thought.
He added as his mum's health declined further, the family had an "honest" discussion and decided it would be best for her to have full-time professional care. She has lived at Thornton Hall Lodge care home, Crosby, for several weeks where the care has been "fantastic".
But Frankie said one thing the family, who lost their dad in the early 1990s, was not prepared for was how Irene's illness would affect them. He told the ECHO: "Nothing prepares you for it. We have noticed how much mum's grandchildren have become upset when they visit her.
"Before now I don't think my wife had ever seen me cry. Now I'm crying on almost a daily basis. I feel so many different emotions - it can feel so lonely but I also feel guilty. We are all broken hearted - it's been an emotional rollercoaster."
Frankie will be running the London Marathon in April to raise money for Dementia UK and the Remember Me dementia day centre. He called the centre "a lifeline" for those with a loved one with dementia - and said without the support given to his family they would be "lost". He added his aim is to raise more awareness of the disease in the hope a treatment can be found.
He told the ECHO: "I want to do this for my mum. I don't think there's enough awareness of the disease, so I hope by speaking about it raises more awareness of dementia and how it affects the family. I hope this can be a driving force."
You can donate to Frankie's dementia fundraiser here.
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