Emma Heming Willis Opens Up About Husband Bruce Willis's FTD Diagnosis & How to Help Caregivers

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00:00No one wants the diagnosis, and we don't want that for our loved ones, but also there is still joy

00:04to be had. Learn and grow into this new chapter of your life.

00:13Emma, thank you for joining us to talk today about your caregiving journey, which your book

00:19was honestly like so inspirational. I definitely cried reading it. I cried writing it. I'm sure

00:24you did. Just reading, you know, everything that you and your family have been through. I mean,

00:28it's really intense. I don't think many people had heard of frontotemporal dementia, which we're

00:33going to call FTD going forward because it's a little easier to say. It's interesting because

00:37I think a lot of people think there's just there's one type of dementia or there's just Alzheimer's.

00:41Like people don't really understand the nuance. Can you just give me an example of sort of a first

00:45sign of FTD that people should watch out for in their family members? You know, I think, yeah,

00:51I think so. FTD can present in three different ways. There's a behavioral variant. There is a language

00:56variant and also one that affects movement. For Bruce, he was diagnosed with PPA, which is short

01:04for primary progressive aphasia, which affects language, communication, reading, writing. So for

01:11those first early signs, what I had noticed, Bruce had stuttered severely as a child and then kind of

01:17was able to manage it through his adult years. And then I noticed it starting to come back. But going

01:25back to what you said, you know, like Alzheimer's is the most common form of dementia. They say that

01:3090% of cases are usually Alzheimer's and where 10% are like the other related dementias. But what

01:37I had learned from a dementia care specialist, Tepa Snow, that there are 120 different forms of

01:45dementia. One thing that you wrote a lot about in the book is how Bruce's other family members had

01:49really stepped up to help. What are some ways that they are doing that now and have been doing that in

01:55the whole journey? You know, we all just want to show up for the person that we love. What has

02:00worked for us as a team is that we are able to just see what our strengths are and how each person can

02:07then best support their dad, my husband. It takes a lot of communication. It really is teamwork. It's

02:14very hard to care for someone with dementia alone. You really need support and it's important to rally it.

02:23And what does self-care look like for you now? Because I know you don't have a lot of time. You

02:27don't have a lot of mental space. So how do you take care of yourself? You know, early on, before we

02:32had formal caregiving, it was really hard to even think of what self-care was or what that looked

02:39like. And it was always so triggering when someone would say to me, like, how are you looking after

02:43yourself? And it's like, well, how can I look after myself? But what I've learned is that it doesn't

02:47have to be these big moments. You know, sometimes it's just about getting outside and just feeling

02:54the sun on my face or going for a walk around the block. You know, just being able to make sure that

03:01that support is there so that a caregiver can just get out of the house, you know, and connect with

03:07someone that they love, a friend, you know, to be able to go for a walk. It doesn't, you know,

03:11have to be a spa moment, but it can be if they want it to be. But, you know, like I have a garden

03:17in our backyard. And for me, that's like my form of meditation is to be able to get out there. I was

03:22like, you know, close to my house, but still be able to get outside and plant and weed and water and

03:29watch them grow. And that feels very much in my control. So for me, it's just that was about my own

03:35mindfulness, my own meditation. That was a way I cared for myself.

03:39What is something that someone has done for you, like a really kind gesture that really made a big

03:44difference for you? So I have this friend of mine. Her name is Julia. It was Bruce and I's wedding

03:50anniversary. And she had heard or knew that it was coming up. And I got a text from her saying,

03:57I've left something for you at the front of your house. So I went out and it was just like a bouquet

04:02of flowers there for us with a beautiful car, just like wishing us a really happy anniversary. And I just

04:06thought that was so beautiful and thoughtful that our anniversary wasn't looked over because of my

04:14husband and his disease, that it's still very meaningful, not just to, you know, myself, but also to

04:21friends. And I just, or my friend, which I just thought that was a really beautiful, kind, loving gesture.

04:28It is. It's so sweet because you just, you think, I think a lot of us are thinking, how can I support my friend

04:33going through a hard time? And sending flowers is such a, like, such an easy thing to do. It's so

04:38simple. You mentioned the importance of bringing in outside help as a caregiver. And so what does

04:42that look like for you and your family? For us, I realized that as Bruce's disease progressed,

04:48the needs changed and we needed someone a little bit more formal. You know, I think it's hard for a

04:53caregiver to realize that you've come to that point in a disease where you need more support,

04:58you need more help. Also with that comes, like, a lot of guilt. You know, we think as caregivers,

05:05we feel like we're the only person that can do this. Only, it's only going to be me. This is my

05:10duty. For me, there was like so much guilt around that time when I brought someone in, but it was

05:16Bruce's neurologist that woke me up and was like, you need help and you need to understand the

05:21statistics of caregivers passing sometimes before their loved one. And I just thought that's just,

05:28I had never heard that. I didn't know that. And that was such a wake-up call for me just to be

05:32able to realize, you know what, like, if I am going to try and sustain this journey, then I do need the

05:37support. And I'm not failing my person because I'm bringing in support that it's absolutely needed.

05:44So for us, you know, we're very fortunate. We're in a very privileged position where we can

05:49afford professional caregiving. One of the things that I had heard over and over again in my book

05:55from the specialists and experts that I bring in was that the biggest mistake that caregivers make

06:01is not asking for help and not asking for it soon enough. It is important to start rallying

06:07your friends, your family, whatever that might look like, to find some support.

06:13Well, I wanted to show you this book that we put together in partnership with Cleveland Clinic.

06:18It's two families that have struggled with different forms of dementia. The first is Sean

06:23and Lisa. They are a fellow FTD family. And one thing you might notice, you know, that kind of

06:28reminded me of things that you said was there they are zooming with other people that are not in their

06:34family. They're staying connected to other people. And then this is, I think, a nurse that they brought

06:39in and, you know, just giving them a hug. And just you can see that they have made an effort to bring in

06:44outside help, which I think is really cool. That was one great thing that came out of COVID was,

06:51you know, being able to have Zoom, right, and know how to use that and be able to connect with more

06:56people online, especially for support groups now. So, I mean, even if you're living in a small town and

07:01you feel like you don't have community, there's always online support, which I think is really

07:06important because isolation for caregivers is a silent killer.

07:10And then the other couple, Melissa and Kevin, this was an early onset Alzheimer's case. One of them

07:16got the A Breathe tattoo just to sort of commemorate their journey. Yeah. Have you done anything like

07:21that? Like any sort of commemorative moments? I wrote a book. That's true. You know what? You did

07:27the ultimate. That's the ultimate tattoo. Yeah, I was like, wait, wait, what have I done? Oh, yeah,

07:31I did that. You know, you really see the journey there. And it's so nice for this family to be able to

07:36have that. Is that their young child? Yeah. Oh, that's great. And you can see, you know,

07:40they're still having fun and it's just, it's sweet. Life doesn't stop because you get a dementia

07:44diagnosis, you know, and I think that this stigma around this disease is, we really need to put an

07:50end to that because I think just because you get a diagnosis, it's a terrible diagnosis. No one wants

07:55the diagnosis and we don't want that for our loved ones. But also there is still joy to be had and

08:00you can see that, that the love is there. And then you just learn and grow into this new chapter

08:08of your life. Looks different for everyone, right? Absolutely. You just got to find what works.

08:13Thank you for sharing. Yeah.

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