Looking for joy: A carer for whom the future is scary, but whose smile is real

‘I no longer see myself as a wife – I’m a carer. My role has evolved and it’s a distant kind of relationship, which is very sad.’ 

Having spent much of her working life supporting people with dementia, Michelle Macadangdang never imagined that her family would be so directly affected by the condition.

Her 49-year old husband David has young-onset Alzheimer’s disease, which has completely changed their connection as a couple. 

‘I can’t consult with him about decisions and there’s no affection or terms of endearment from him,’ says Michelle, who lives in Grays in Essex. ‘I miss who he was as a person.’ 

But despite the many challenges that she and her young family face, Michelle has managed to stay smiling. 

‘I reflect on how I’ve progressed and been able to cope,’ she says. ‘If you’re strong and have a positive mindset, you can get to where you need to be.’

Family joker 

Michelle describes David as laid back, humorous and a peacemaker. 

‘He was quite a sociable person – the joker in the family,’ she says. ‘I was the worrier but he could balance the situation. He was a lovely guy and a great husband.’ 

David’s role within the family allowed Michelle – a regional director for a private care home provider – to pursue and progress her career. 

‘David has a first-class degree in applied biology, but he was happy to be a post person at Royal Mail,’ she says. ‘I’m ambitious and work a lot, so he’s been the one to do things like taking the kids to school – I appreciate that.’

Police call 

In 2015, David took an MMSE (Mini-Mental State Examination), which tests memory and other mental abilities, after Michelle noticed changes in his behaviour. When the test couldn’t find anything wrong, Michelle arranged for them to try relationship counselling. However, they stopped because David struggled to express his feelings. 

David started becoming more forgetful and unkempt, even though he’d always taken pride in his appearance. 

‘I knew something wasn’t right,’ recalls Michelle. ‘Having worked with it, I did think it could be dementia.’ 

A consultant gave a diagnosis of pseudodementia, where someone has symptoms that look like dementia but which are actually caused by depression. Although David was prescribed antidepressants, things didn’t improve. 

David worked evening shifts but started getting home even later than usual, blaming bad traffic on the roads. In October 2016, Michelle got a call from the police at 2.30 in the morning, saying they’d found David driving on the wrong side of the road. 

‘I wanted something to be physically wrong, as even a tumour can be fixed, but nothing was found,’ says Michelle. 

David was diagnosed with frontotemporal dementia in October 2017, which was amended to early-onset Alzheimer’s last year. 

‘I wept in that consulting room,’ says Michelle. ‘They told me what I knew but didn’t want to hear.’

Rapid decline 

Michelle and David have been able to enjoy trips abroad in recent years, though these have been marked by changes in David’s behaviour and abilities. 

‘In Florida in 2018 I noticed his gait had changed. He was also less patient and becoming more irritated,’ says Michelle. ‘Last year we went to Israel and his mobility and balance wasn’t great. That holiday was a transition into me being a carer. 

‘His decline has become quite rapid in the past year. Conversation is very limited because of his speech and comprehension, and he now struggles to say our children’s names, which is difficult for them and him.’ 

The recent coronavirus lockdown has presented additional challenges. 

‘David used to go to a day centre every two weeks, but that stopped, so now he just has his daily walk,’ says Michelle. ‘He doesn’t understand social distancing, so I have to steer him away from other people. 

‘He doesn’t always get a drink, so is at risk of dehydration, and I had to feed him the rest of his meal today.’ 

David’s also been diagnosed with corticobasal syndrome, where damage to brain cells causes problems with movement, balance and co-ordination that get worse over time. 

‘There’s a lot going on,’ says Michelle. ‘I have thought to myself, “I’m only 44 – I shouldn’t be going through this.”’

Family faith 

Michelle says the support of her mum – who provides day-to-day care for David – has been ‘fundamental’, while her children, aged 11 and 16, have also continued to adapt. 

‘My son helps David with showering and shaving. David can’t speak to him, so that’s their connection,’ says Michelle. 

David used to be an assistant pastor at a local church, and the family’s Christian faith has been central to how they cope with their situation. 

‘Our son has described his feelings within our family prayers, even though he didn’t want to say anything to me directly,’ says Michelle. ‘If it wasn’t for my faith, I don’t think I’d be able to smile every day.’ 

Michelle made sure to get a lasting power of attorney in place while David was still able to set this up. She’s also been grateful for support from other carers she’s befriended on social media and for bereavement counselling, which was suggested to her by Alzheimer’s Society. 

We’ve given Michelle advice about disability benefits and how to access hospice and community care services. We also put David in touch with a volunteer who visited and read the Bible with him.

Not hiding 

Michelle hopes that her story will give strength to others. 

‘To watch somebody you love lose their abilities at such a young age is heartbreaking,’ she says. ‘I never thought it would be us. 

‘I didn’t want to be dealing with mobility, continence, personal care. Nothing can prepare you, not even a care background, for that personal experience of dementia. But I’m still here, and if I can get through it, anybody can.’ 

A key element of Michelle’s approach is a commitment to looking after herself as well as David. 

‘That’s really important,’ she says. ‘I still go out with my friends. I don’t want to lose my identity because my husband has lost his. 

‘My work also gives me time to be away from home and have my mind on something else. It’s a release during lockdown and I don’t feel guilty about it.’ 

As she strives to maintain a positive perspective, Michelle’s inner strength may sometimes surprise people. 

‘I know they want to empathise, but I hate it when someone says, “It’s OK, you don’t have to smile.” They assume I’m hiding behind a smile because I can’t overcome this – but I’m not. 

‘My kids and husband are happy. Yes, life is difficult and the future is scary, but we’re OK. I can still see joy in the here and now, and if you can’t see joy then you’ve got to look for it.’