Leaving a gift in my Will felt like the right thing to do: Kate Lee's story

Kate Lee, Chief Executive of Alzheimer's Society, shares the story of her mum living with dementia, and why she has decided to leave a gift in her Will. 

Why I chose to leave a gift in my Will

In early 2004, my big sister died after a long battle with breast cancer. I was struggling with postnatal depression and feeling vulnerable and lost. I needed my mum, and she seemed to be occasionally distant and slightly, well… odd.

We didn’t live close to each other, she was in York while I was in Coventry, and in our grief, we drifted apart. When we saw each other, I realise now, the last thing she was going to do was tell me about her strange symptoms, like falling over in WH Smiths; she didn’t want me to worry.

I wish I’d known then how common it is for people to mask their symptoms. Like Mum, they don’t want to worry their loved ones, and I think there’s also an element of denial.

People, quite understandably, don’t want to accept what’s happening so they put their symptoms down to momentary lapses, tiredness or stress. And their families often go along with it, because that’s what they want to believe. That’s what I did with mum.

Accepting Mum's condition

It wasn’t until 2007 that I was forced to confront her condition. I’d had a brilliant idea! Mum had always wanted to visit The Hermitage in St Petersburg and I saw going on holiday together as a perfect opportunity for us to reconnect.

It was a disaster. Even before we left Heathrow, I realised just how ill she had become. She had been such an organised and independent woman, but she kept asking me what time the plane boarded, over and over and over and over again.

Kate Lee with her mum

Kate with her mum on their trip to Russia

It was a long week in Russia. I cried a lot on the phone to my husband and dad at night when she had gone to bed. I’m sure I lost my temper with her a few times while getting a crash course into the realities of caring for someone with dementia. But there were also tender moments I’ll never forget.

Like walking in Gorky Park together and sheltering from the snow in a café: this became one of the last memories Mum ever recounted to me.

Throughout the trip, however, I kept thinking: ‘how has she got like this? How has dad been coping? Why didn’t I know?’ I was exhausted and felt panic, guilt and fear.

Commitment to change

Since joining Alzheimer’s Society, I’ve learned I wasn’t alone in feeling those things. Perhaps, at some point, you have too?

I don’t think anybody should ever have to go through dementia alone, without the information and guidance that helps you understand what’s going on and what you can do for the best.

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That’s what our dementia advisers, and indeed all our support services, are here to do for people.

It is reassuring to know that in the future a gift in my Will to the Alzheimer’s Society will help people struggling with dementia. They won’t be on their own.

They’ll have a dementia adviser or somebody else at Alzheimer’s Society to turn to - somebody to answer their questions. Somebody who knows what they’re going through. Somebody on their side.

As well as ensuring our services are always here for people, gifts in Wills are also vital if we are to continue to support the most promising scientific research.

The greatest obstacle to making that change a reality is the shortage of funding. A gift in your Will could, however, bring the breakthroughs we need much closer. Your gift could be the difference that means a promising research proposal is given the green light – and scientists go on to make discoveries that transform people’s lives.

A gift in your Will can also help Alzheimer’s Society continue to hold governments to account. The current social care system fails people affected by dementia. Decades of underfunding and neglect have made it difficult to access, costly and unfair.  

Change can’t come soon enough, and we will not rest until we see free, quality care that is available to everybody who needs it right now.

In the longer term, a gift in your Will can help ensure we are always here to represent the dementia community, so that your needs, views and aspirations are not forgotten.

For my family, the moment we’d been dreading came in 2019. Despite the traumas, setbacks, upsets and illnesses, my dad valiantly provided mum’s care until, after an emergency respite episode, it was very reluctantly agreed she would remain in residential care.

So that’s where she is now, in a beautiful home with a room that overlooks the sea. Since coronavirus restrictions lifted, I’ve been able to see her face-to-face a couple of times. She doesn’t know me now, but I don’t think she loves me any less.

I will not let this disease define my memories of my mum. And I will not rest while it continues to define the memories of anyone else.

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