I live with dementia: Lorelei’s story

May 19, 2022

We spoke to Lorelei King, one of our wonderful ambassadors, about her support for the charity and her experiences of dementia.

March 31st 2020 is a day that stands vividly in actress Lorelei King’s mind: the day she could not say goodbye to her dying husband, American actor Vincent Marzello, after he contracted Covid-19 in his care home.

“Covid grief is complex. You feel your loved one has been stolen, taken from you unnecessarily. And since Vince died, I’ve realized that when your lost loved one also had dementia, it is more complicated still. It’s not just missing their presence in the world; you’re also grieving the parts of them that have slowly vanished over the years because of the disease.”

As the doors to Vince’s care home were locked to keep Covid-19 at bay, Lorelei wishes desperately that she could have been with him, but she stayed away for the safety of the residents. Nevertheless, she is firm in her commitment to honour Vince’s memory by reflecting on the life they had together, the challenges they faced with young onset dementia, and the changes that still need to happen in the dementia care system.

The love of my life

When Lorelei met Vincent, with whom she was starring in a BBC radio drama in the 80s, she didn’t know that she had met the love of her life. “At first we didn’t really get on! But I realised that I had to make an effort to get along with him, given that we were working together.” What followed was an exchange of numbers, with Lorelei seeing a new side to Vince in their subsequent telephone calls.

Their relationship grew, eventually culminating in Lorelei turning to Vince at one point to say that she thought they were made for each other. Lorelei recalls Vince’s retort only too well: “He said, ‘Well, I think it’s more that we kept bumping up against each other and knocking off the edges until we fit.’ And he was right,” she laughs. “We did fit. We got along so well – I only remember one or two real arguments in the thirty-three years we were together.”

Lorelei King and Vincent Marzello together

Lorelei and Vince

They married in 1996, “…at St Etheldreda’s, the most beautiful church in London,” says Lorelei. “It was the happiest day of my life.”

It was a trip to Rome– a nod to Vince’s Italian heritage – that Lorelei also remembers with special affection. Guides around the incredible monuments of the city, a stay in a beautiful hotel, and romantic candlelit dinners were all part of their last lavish event before Vince became ill.

First signs

“It was around 2005 when I noticed small things, like Vince having difficulty following the plots of films. He had also always looked after our finances, and I noticed that he had stopped showing me the accounts.”

“We used to help each other learn lines for work, and memorising seemed to take him longer and longer. To my shame, I would sometimes get impatient. I simply didn’t understand why he couldn’t remember. Then there was the time he forgot his lines in the middle of a West End play. It happens to actors now and then, so I didn’t think much of it, but he was very shaken by the experience as he was usually rock-solid on lines.”

Lorelei went to see the GP, who dismissed her concerns that it could be dementia. “The doctor talked me out of it because Vince was still in his fifties, and I allowed myself to be swayed, because who wants that news?” The fact that Vince was still working, socialising, and functioning were for Lorelei, and professionals at the time, reasons to exclude dementia. For Lorelei now, it is evidence of the lack of awareness that still exists around young-onset dementia.

Lorelei and Vincent

Lorelei and Vince

Mounting concerns

Despite the reassurances of the doctor, Lorelei’s concerns began to mount. There were times when she would walk into the kitchen to find all the burners on the stove ablaze after Vincent had forgotten to turn them off; he would remove the fronts of drawers and replace them upside down; Lorelei would have to double-lock the front door at night and hide the key to stop him from wandering. Vincent was still very strong, and there was no way she could physically stop him from doing something if he was determined. She learned to rely on distraction and persuasion instead.

Regardless of these changes in Vince, the couple still hadn’t been given a diagnosis.

In fact, it would be more than seven years from the onset of symptoms before a diagnosis was made. Even then, it was only noticed because of Vince’s diagnosis of cancer in 2009 – a potent reminder to Lorelei of just how far behind dementia care is from other long-term health conditions. The formal diagnosis of dementia didn’t come until 2012.

Lorelei is still upset by the fact that when Vince was in hospital being treated for cancer, staff didn’t understand the additional needs of someone with dementia. They didn’t understand that, due to his cognitive challenges, they couldn’t just give Vince his antibiotics and ask him to take them, or assume that he knew he needed to press a button for pain relief. To her, it points to a wider lack of understanding of dementia by professionals. “As I’ve said before, it’s not enough only to know that a patient has dementia – there needs to be a clear plan in place as to what that means and what needs to be done differently because of it in terms of a person’s care.”

The search for support

As the dementia progressed, Lorelei faced an uphill struggle to find out what emotional, financial and practical support would be available for them both; this included actual care and activity groups which could keep Vince stimulated. “I had to become a truffle pig to snout out these things. When you’re caring for someone with dementia, it’s full-on. I was also working, which was a lot to juggle, and I often couldn’t accept jobs because of his care needs.”

“It was exhausting. What would have helped both of us at that time is if there had been a day care centre he could have gone to. It would have given me a chance to catch up on everything and would have given him much-needed contact and stimulation.”

Vince went into care in 2015 when Lorelei’s mother became terminally ill and she had to return to the States. “It was intended to be temporary,” she says, “but on my return I realised that it was best that Vince stay in care. He was still very strong but had deteriorated in other ways, becoming more aggressive. There was no way I could look after him properly and keep him safe at home.”

With details of the plans for social care yet to emerge for the benefit of families with dementia, Lorelei knows only too well just how many facets of the system need to be addressed. “The fact that many families have to fight tooth and nail for any little help they might get practically and financially is criminal. Information overall needs to be enhanced and consolidated.”

A steep learning curve

Lorelei has learnt a lot about dementia through her experiences with Vince.

Lorelei and Vincent on their wedding day

Lorelei and Vince on their wedding day

“I’ve learned that dementia isn’t just about memory: it’s about perception, sight, hearing, and emotion. Facts can go, but feelings stay.

“I’ve learned that love survives, but that love alone is not enough – we need practical and emotional support.”

The importance of being an Ambassador

Since becoming an Ambassador for Dementia UK after attending a fundraiser when Vince was still living with dementia, Lorelei has found out about the vital work of Admiral Nurses. It has also helped her to direct her feelings around how dementia care should change. “You can’t underestimate the impact that dementia has on people, and having an Admiral Nurse can be a lifeline when you’re flagging. You can stop people from drowning if you give them information and support at the right time.”

Lorelei hopes that her Ambassador post will help to raise awareness of dementia, but also help families to process feelings that they may be struggling with. “I would like people to know that they are not alone, that their strength is not endless, and that it’s okay to ask for help.”

Lorelei is supporting Dementia UK’s #ILiveWithDementia campaign. The campaign highlights the vital support the charity offers through its specialist dementia nurses, known as Admiral Nurses – who provide life-changing support for families affected by all forms of dementia. To find out more, visit dementiauk.org/ILiveWithDementia or search social media with the hashtag #ILiveWithDementia.

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