It was Christmas break during Katherine-Lee Burchell’s last year of university in Toronto when she discovered her mom Gini LaVerne Lambert had early-onset dementia.

Ms Lambert (nee Swan), a principal customs officer for government, was 55 and showing signs of the condition at work.

“In home life, I actually thought that she was going deaf,” said Ms Burchell, now 32. “When I would speak, it would take a second to register or she wouldn’t acknowledge when I would say something.

“In the workplace, it was seen in the way she was writing her emails or forgetting certain processes.”

A family meeting was held during the festive holiday and the devastating diagnosis was shared with relatives.

Almost a decade on, Ms Burchell’s life is nothing like she imagined it would be when she was a final-year student getting ready to embark on the next stage in her young adult life.

“Once I came home from college, it was straight into this life, where you are just going to have to deal with this chapter, and it’s lasted until 2025,” she said.

“She is still alive. We still care for her in the home.”

Ms Burchell moved back into the Warwick homestead straight after graduating and she and her stepfather Edward Lambert took on caregiving duties, in addition to their full-time jobs.

Initially, Ms Lambert could be left alone and could drive to pick up a daily treat from KFC, where the staff knew her well.

Heartbreaking decline

But her daughter said the symptoms of dementia “progressed pretty quickly”, particularly once the pandemic began in 2020.

She recalled a heartbreaking moment watching her mom on a doorbell video trying to get into their home.

“She couldn’t figure out how to use the key. She went to go get a stick and she was trying to use a stick to unlock the door.”

Ms Burchell described Alzheimer’s as like a “weird game” where “you reach a new level with each new era that comes.

“With each level you grieve again because you’re realising that ‘man, she can’t do this anymore’. Or ‘I remember when she could do this’.

“The grieving process never ends as a caregiver.”

Her beloved 64-year-old mom — once a “powerhouse, a big-time boss in her career, one of the most friendly and loving people” — is now in the late stages of Alzheimer’s.

She is incontinent, can only eat pureed food and has very limited mobility. She has not spoken for a long time.

It’s when describing her mom before the condition took hold that Ms Burchell is most emotional.

“I always said when I grew up that I wanted to be just like her,” she said.

“I saw how people reacted to her spirit. She was a philanthropist as well, she was very big in assisting with Friends of Hospice, Agape House, and the Rubber Duck Derby.”

These days, Ms Lambert does not appear to recognise her loved ones or her familiar surroundings, though she does watch her husband intently when he’s in the room.

Ms Burchell and her stepfather have chosen to keep her at home “trying to give her as much dignity as possible” but it has taken its toll.

For years, they managed without a caregiver, juggling their shifts around their responsibilities at home.

“I struggled with depression because it just felt like there was no breathing room,” said Ms Burchell.

More recently, they have hired part-time caregivers and now Ms Lambert has a full-time carer in the day when Ms Burchell and Mr Lambert are at work.

At-home care typically costs between $4,000 and $5,000 a month, not including food and medical supplies such as diapers and bed pans. HIP, the government health insurance plan, pays a portion (up to $15 an hour), but the financial strain is severe.

Ms Burchell initially went into the tourism industry after college but switched to the corporate world for more money and a less pressured role.

She has had to change her expectations, both of what she imagined for herself and what she thought others within her wider family might contribute.

Family support, she said, is crucial to the individual and the caregiver.

“It could be as simple as you coming in and sitting with the person for a few hours so that the carer can go and do their errands comfortably.

“There definitely could have been more assistance from the family as a whole.”

She advised anyone at the start of their caregiving journey not to take it personally if relatives don’t step up.

“I went through the resentment,” she said. “But for you to hold resentment, it’s only going to harm you. It’s only going to weigh you down when you already have enough on your plate.”

She said it was vital to spell out to those in the sufferer’s life before the diagnosis what they could now do to help.

“They may not receive it how you want them to and they may not do anything to assist … but if you don’t speak on it … then ultimately you are putting it on yourself.”

Giving thanks

She is grateful for those who have helped, including her stepfather for “all that he has done and for remaining to be in her life” and caregiver Dedra Hayward.

The kindness of others, such as Shawn Talbot, the founder of meal prep company Nourished Bermuda, has meant the world. “I would order food [through Northstar Dementia] and he would give extra meals,” said Ms Burchell.

A neighbour, Beverly Brangman, would take Ms Lambert for walks after her diagnosis, to help her mobility.

Meals on Wheels, arranged for Ms Lambert by her son, have proved a lifeline, as have Marie Fay and all at Dementia Bermuda, an organisation that Ms Burchell now volunteers for herself.

She is on the charity’s board and serves as secretary, relishing the chance to assist others.

Ms Burchell tells those she meets through Dementia Bermuda that “grieving will be an ongoing process”.

She explained: “You will grieve the person in front of you, losing themselves, and you will grieve the life that you thought you would have, that you no longer have because you’re doing this tremendous job of caring for someone that cannot care for themselves.

“And it’s OK. You are not alone.”