Bruce Willis' wife Emma says dementia is 'isolating' but few families talk about it
LOS ANGELES, CALIFORNIA: Bruce Willis' wife, Emma Willis, is talking openly about her experience of taking care of a dementia patient. Previously on several different occasions, the actor’s wife has taken to social media to share Bruce’s journey through a difficult time as he copes with an incurable illness.
The founder of Positive Approach to Caring and occupational therapist Teepa Snow participated in an Instagram live that was hosted by Emma Heming Willis on March 24. The two talked about how it can be difficult to understand dementia if you haven't been diagnosed with it.
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‘People were thinking I was asking for privacy’
Emma corrected her remarks by stating that she didn't anticipate photographers to stop taking pictures of her husband after Snow brought up the negative feedback she received when she begged them to leave her husband alone. She only asked that they act in a polite manner.
"People were thinking I was asking for privacy. We weren't asking for privacy. We were asking for respect for my husband and his disease," she explained. "I think it just goes to show that there is just so much more education that needs to be about dementia."
Emma felt that the lack of knowledge regarding the illness made it difficult for people to understand her request. She remarked, "I guess if you're not living it or know it, you don't understand it”. According to her, the lack of information is caused by the fact that few individuals discuss their experiences as carers and how particular circumstances can work as triggers.
Emma said, "If you could take a look into my messages and my direct messages, honest to God, you would think the whole world has dementia," adding, "So many people now are coming to me and telling me, and I even have friends now, ‘You know, my grandmother, or my so-and-so had it,’ and I'm like, 'Why didn't I know?' We're not talking about it".
Caring for someone with dementia
When Emma first learned of her husband's diagnosis, she said it was difficult even for her to talk about it since "it is so isolating." She admitted that she contributed to some of that loneliness as it was very tough to talk about. She admitted, "I did that to myself for a while of just holing up, and my friendship circle became smaller because it was also very difficult to talk about."
When Willis was diagnosed earlier in March, Emma wrote in a blog post that it was challenging to celebrate milestones like birthdays and anniversaries "when usually our person would acknowledge the event, now their changing brains just can’t. And that is what it is."