Living with dementia magazine June 2011

Considering a move into long-term care is one of the most difficult decisions people with dementia and their carers face. Luke Bishop spoke to two carers about their experiences of moving their loved ones into care.

Making the decision to move your loved one into a care home is far from easy. Differences of opinion among families, concerns about poor quality care and feelings of guilt are among the many reasons people struggle to decide what to do. Provided the move is in the best interests of the person with dementia, however, and carers feel supported in their decision, a move into care can turn out to be the best option for all involved.

Sylvia Gupta

Carer Sylvia Gupta, 69, fully understands the concerns people with dementia and their carers have when they are thinking about a move. She volunteers as a moderator for Talking Point (TP), the Society's online support and discussion forum, where she is in regular contact with TP users.

Sylvia says that adult children on TP often express guilt about moving their parents into care. She says,

'There are many different causes of guilt. People of my generation feel guilty but not usually because we have other responsibilities. We don't have to hold down a job or have dependent children so can concentrate on being carers. There are very different issues for sons and daughters.'

Even so, the time may come when spouses have to consider other options. When Sylvia's husband, Dhiren, was diagnosed with Alzheimer's disease in 2005, she vowed to look after him at home for as long as she could. By the beginning of last year, however, problems with Dhiren's mobility and restlessness came to a head.

Sleep deprivation and anxiety were affecting Sylvia's health and it became increasingly clear she was struggling to cope. She says,

'I had to call the paramedics out every night because Dhiren kept falling out of bed and I couldn't lift him. He'd forgotten that he needed help to walk and would get up without alerting me. In January last year he went out wearing just his pyjamas and slippers. He was also refusing to take his medication.'

A move into care was recommended by Dhiren's social worker and community psychiatric nurse (CPN), who believed the situation was putting them both at risk. Since February last year, Dhiren, 79, has been living in a small care home locally and Sylvia is pleased that he is content. She says,

'It was a great relief to me that the social worker, CPN and my son all came to the same conclusion about the need for a move. In a way it absolved the guilt, but I didn't feel too bad because I knew I'd done everything I could for him. It's been a relief to share the responsibility of caring with someone else as I didn't realise just how much it had all been weighing down on me.'

Although Sylvia now feels lonely, their relationship has improved since Dhiren moved. She says,

'We have a much more loving relationship because Dhiren isn't fighting me or the dementia anymore, plus I'm rested and don't have the emotional and physical burden of constant caring. When he was living at home he would sometimes look right through me, but you'd think the Queen had arrived when I walk into the room now. His face lights up so much.'

Annie Kirby

Before her father's death two years ago, Annie Kirby, 39, promised him she would support her mother, Zeta, to stay in her own home. Circumstances soon got in the way, however, when Zeta was found at the bottom of the stairs last summer following a fall.

Zeta, 67, had lost the ability to speak and the dementia had also affected her mobility. Following the fall, she was in and out of hospital and her condition deteriorated. Annie says,

'When mum was released from hospital we begged them to let her go back home, intending to sort out home care for her. We didn't manage to get that as she'd deteriorated so rapidly that they couldn't meet her needs.'

Zeta was given an emergency placement at a nursing home while Annie, a mother of three young children, had to face the fact that her earlier promise was impossible to fulfil.

She says,

'The promise was made under very emotional circumstances. But reality hits when it's an emergency situation and I realised I had to break it. I didn't feel too guilty because we realised the move was for the best and we're really pleased with how mum is cared for. She has weekly health check-ups and a jacuzzi once a week, which makes her smile and laugh.'

Advice

For advice and a list of useful factsheets about moving into a care home, call our Helpline or visit alzheimers.org.uk/carehomes

Our booklet Putting Care Right (code 838) is full of tips on things to think about when looking at care homes. For a free copy call 01628 529240.