Heartbroken Reading woman says dementia has 'robbed' her children of a father
Hannah Riches has a clear memory of the moment she made the decision to put husband Neil into a care home - when his dementia was so advanced she could no longer protect him.
In 2021, Neil left the house and walked into a road completely unaware of traffic.
Hannah knew then, the time had come because she couldn't keep him safe.
She has been speaking to Christine Alsford about her family's experience, ahead of a special ITV Meridian programme exploring the vital role of carers across the region.
Hannah laughs now as she remembers Neil dressed as a cowboy, riding an inflatable horse at daughter Amelia's birthday party and smiles at the memory of him treating her to a helicopter ride on their honeymoon.
Memories that were too painful to to think about until she took the decision to put Neil into residential care. Aged 51 Neil was diagnosed with early onset dementia - within seven years he's become a shadow of the man he was.
Hannah had always teased Neil about his memory, he'd forget little things - like making a cup of tea. But it was when he started getting lost going out for walks and needed someone with him she knew something was wrong Even so it took 18 months of odd behaviour before they made a GP appointment.
Neil forgot they had sold their house, Hannah explains: "We had a sold sign outside and he'd forgotten that we'd had people in the lounge looking at the house, he'd forgotten that we had discussions. He'd forgotten that they had come to look around our new house.
"How can you feel forget such a big event?
"But actually dementia is more than lack of memory for me.
"Neil, that I fell in love with was replaced with a new Neil that lacked empathy, he was being selfish and was putting himself before the kids and me."
Hannah began to research the impact of living with dementia on their children that made for really grim reading. There were high levels of anxiety, depression, lack of school achievement.
"You know it was unfair enough that the girls were going to lose their father. I knew he would not have wanted them to lose their future as well," Hannah added.
"So a lot of the decisions I made about how we would tackle or face Neil's diagnosis was made through that prism of how would it affect the girls, what was best for their welfare."
The illness progressed, the family muddled along until other advances in the disease, caused by changes in Neil's brain. Incontinence - one of the final indignities and aggression.
"Slowly Neil deteriorated to the state that suddenly he became incontinent, and then kept trying to wander off, he was being a bit more aggressive towards one of our daughters.
"Last April I was at the end of my tether. I was waking three times a night to help Neil who'd had an accident in bed or had gone wandering and couldn't find his way back in. I was just tired and worn out and having to juggle the children and being their emotional support.
"My goodness it was really tough, it has taken all my patience, all my strength. It pushed me to the limit, you know, I'm a different person to the one I was last April.
"The girls would stay with their father, to help look after him if i needed to get the shopping, which obviously took its toll on them and the responsibility that they were having to deal with. Each of them at some point had to help their dad shower and get dressed, you know, and it just was pushing me to the limits."
But despite the strain Neil's dementia was putting on the family, making the decision to finally take him to the home even with its 24 hour care was still one Hannah struggled with. Her daughters, who were five and six when Neil was first diagnosed, were now in their early teens.
The crunch for Hannah was after Neil walked straight into the road unaware of the traffic around him. Hannah called his hospital consultant hoping he could be given more medication - instead he suggested the time had come when Hannah prioritised being a mother over carer.
"I talked it through with the girls and, and we decided that perhaps Daddy needed more help than we could give him. I lost a lot of sleep, I thought about it really deeply and considered it from my point of view, from Neil's point of view, from the girls point of view.
"I felt a lot of guilt. I still feel a lot of guilt. You know, that I let him down and I have let the girls down by by not being there.
"But you go through the guilt and feel like a failure because you have not been able to do it. But equally I knew, I knew it was the right decision and I still know it was the right decision.I'm not looking after him and resenting him being tired and grumpy."
Hannah admits her relationship with her husband has improved now he is in full-time residential care.
"I know the Neil of old would have supported that decision."
Since being in care Neil has deteriorated. He needs help getting our of bed and eating.
But Hannah and her girls now have a more meaningful relationship with him and Hannah says it has given her, her husband back.
"I'm going to visit him and chatting and feeling love again, which is hard to admit, but definitely in those last few weeks, when he was at home, it was hard to feel that way.
"It's been hard to feel like a wife for a number of years. You know, my role was carer and definitely now I can feel like Neil's wife again it's sad being pushed pushed to the limits."Hannah says the hard thing with dementia is not knowing how long the relentless grind of caring will go on for."If someone has been given a six months prognosis it's difficult but bearable, whereas with dementia, you just don't know. it could be a month, two months, six months, a year, two years, ten years. A dementia carer never knows, how how long they are going to be expected to cope But living without Neil is hard for Hannah and her girls: "It's a cruel disease. It's horrible. Losing your husband, you know, the person that would normally support you through all life situations is hard.
"You lose them on a daily basis and you miss them. He was a funny, funny bloke. I miss the humour. I miss the banter. I just miss his company. In the care home I could start to remember what I loved about him, what was funny about him, what we got up to."I feel robbed of my husband and I really keenly feel that my children have been robbed of their father and the support that he I know he would have been. "Despite the guilt she still feels about putting Neil in the home, Hannah knows it was the right thing to do."Ultimately, I can see the benefits over the year in how the girls behave. And how they're more relaxed and less stressed. And and actually, the benefit in my relationship with Neil, you know, how I'm able to be kinder and nicer and gentler with him. I'm with the girls and he's getting specialist care"They've got the specialists and they've got the equipment, they've got the that's their job is to look after them. And then actually my job at the moment is to be a mother and be a wife. And I can do that again.Hannah says caring for anyone is isolating. She's been helped by Dementia UK's Admiral Nurses who provide free, specialist advice, support and understanding to anyone affected by dementia.
she can now remember the good times but the thing that hurts is the loss of a dream, of a happy retirement with Neil : "Caring was relentless. I was snappy and unhappy. It had a really negative impact and it took its toll on my health and my wellbeing and, and my hopes.
"The thought of reminiscing and, and remembering the good times was too upsetting when Neil was home, I couldn't do that. Now with that pressure off, when I go to visit Neil, I can remember the good times. I can remember the Neil I fell in love with and I can share those stories with the girls
"But Neil and I dreamt of travelling in our retirement and ultimately, I'll be a widow and that's not what I hoped for.
"I hoped to be growing old with Neil."
If you or your family are in need of support you can contact the following organisations.
Dementia UK - 0800 888 6678
Crossroads Care - 020 8943 9421
Carers UK - 020 7378 4999
Carers Trust - 0300 772 9600
Rethink - 0808 801 0525
Samaritans - 116 123
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