All About Alzheimer's Newsletter- Monday 28th July 2024

I recently came across an inspiring story about Helen McDavitt, a woman whose personal experiences with dementia have shaped not only her family life but her entire career.

Helen’s journey with dementia began in the 1990s when her grandmother started showing signs of paranoia and vulnerability. It was a difficult and confusing time, and her grandmother sadly passed away in 1997.

Ten years later, Helen’s father, Keith, began to change. He became withdrawn, angry, and often aggressive. Although he was never formally diagnosed with dementia, the emotional impact on the family was enormous. He died in 2014.

Rather than letting the experience break her, Helen found a sense of purpose. She trained as a nurse and dedicated herself to dementia care, determined to support other families through what she’d already lived through.

Then, in 2024, the issue hit home again when her mother, Ann, was diagnosed with dementia. This third experience within her close family has intensified Helen’s fears for her own future, especially as she navigates the menopause, an experience that can sometimes be mistaken for early signs of dementia.

Despite all this, Helen has taken her pain and transformed it into something powerful. For the past seven years, she has worked as a dementia specialist Admiral Nurse with Dementia UK, supporting families as they face the complexities of the disease.

In her own words:

Helen’s story moved me deeply.

It’s a reminder that behind so many professionals working in this space is a personal journey. Her strength and dedication are helping families feel less alone, and that’s something truly worth recognising.

Every week, we hear powerful, honest, and deeply moving insights from caregivers like you- and we don’t want them to sit unseen.

Thank you for asking such an honest question.

When someone is following you from room to room, needing constant reassurance or contact, it can feel overwhelming.

You love them deeply, but the constant closeness can chip away at your energy and sense of space. And that doesn’t make you a bad carer or a bad person, it makes you human.

This kind of behaviour is often a sign of anxiety or confusion. The person may not understand where you’re going, or they may feel unsafe when they’re not near you. Their world is changing, and you are the one thing that still feels familiar and secure.

But just because we understand why it’s happening doesn’t mean it’s easy to live with.

Here are a few gentle suggestions that may help:

1. Reassurance goes a long way
Sometimes, simply saying, “I’m just popping into the kitchen, I’ll be back in a minute,” can reduce their anxiety. Over time, you may be able to build up their confidence that you’re not leaving them.

2. Visual cues can help
Leaving the door open or putting on music they like in the background can offer reassurance that you’re still nearby, even if they can’t see you.

3. Create moments of positive separation
If possible, engage them in an activity they enjoy, folding towels, looking at a photo album, or watching a familiar show, before stepping away. It may buy you a few precious minutes of breathing space.

4. Build in time for you
If you’re not already getting respite care or support from others, please don’t feel guilty for asking. Even short breaks can make a huge difference. You can’t pour from an empty cup.

And lastly, please know that needing space doesn’t mean you’re failing. It means you’re trying to look after both of you.

If it’s helpful, you could also speak to a dementia specialist who can offer one-to-one advice tailored to your situation.

You’re doing an incredible job.

Warmly,
Harvey

If something’s been on your heart lately, let us know. We read every word. Your voice could offer comfort to someone else navigating the same journey.