The Dementia Podcast

What Changes?

November 30, 2022 Professor Colm Cunningham Season 1 Episode 7
The Dementia Podcast
What Changes?
Show Notes Transcript

In the final episode of this season of the Dementia Podcast, Ailsa talks with filmmaker Jason van Genderen and Megan van Genderen about their recently released documentary Everybody’s Oma and about the challenges, heartbreak and love captured in the film as they cared for Oma. 

Through Ailsa’s conversation with Jason and Megan we explore their journey of care, the choices they made to fight for and maintain Oma’s independence and the difficulties that brought, all during the pandemic. 

Ailsa and Colm speak about what loss can do to the people nearest and dearest to those living with dementia and how support sometimes fails in those moments. 

We’re very proud to have brought you this season of the podcast, Starting Conversations. We’re going to be busy working away on the next season but please do subscribe on your favorite podcast platform to stay up to date.
 
If you have any questions, thoughts or feedback for the season we really would love to hear from you. Please do get in touch at hello@dementiacentre.com

The music for this podcast is reproduced with the permission of the composer and is registered with APRA 

Oma:

Shopping at home?

Jason:

Yeah, we've made a shopping centre at home especially for you. It's a bit hard because we can't take you to the shops. So we thought we'd bring the shops to you

Colm Cunningham:

This is the Dementia Podcast. I'm Colm Cunningham. You've just heard a short excerpt from the documentary Everybody's Oma. In our last episode, we spoke a little about the changes that can happen, the progression of dementia, how it affects people differently, and also how things can change for the person with dementia and their family, and even community perceptions. In Everybody's Oma we see what some of those impacts can be both on the person living with dementia and the people around them. It's a cold night in Melbourne, and Ailsa's at the screening for the documentary as it opens at the Melbourne International Film Festival.

Ailsa Wild:

I haven't really been to the cinema much in the last five years. I had a baby who always needed me at bedtime. And then there were two years of pandemic lockdowns. So even the experience of arriving in my plush seat feels a little overwhelming. As the documentary starts, I fall in love with Oma's delighted smile. I'm completely swept into Jason and Megan's lives as they fight in the kitchen about whether to keep Oma's cat, take Oma out to fancy dinners and navigate the relentless, heartbreaking but also joyful task of loving and caring for her as she inevitably deteriorates. After the credits rolled to a stop, and the lights come on, the crowd definitely has a kind of collective shell shock. The film was revealing and deeply personal. And towards the end, it was hard not to let the emotion spill out into the audience. Jason, Megan and the crew of the film have a Q&A after. And this releases a large amount of that charged emotional atmosphere. The crowd filters out of the cinema. And I wait for Jason and Megan. Like Colm said, it's pretty cold. And so we try to find a quiet spot to record indoors. But Saturday night in Melbourne City is not a quiet affair. Eventually, we relent and head outside to a cafe across the road, which allows us a table outside with the music turned almost all the way down. Huddled in the corner, near a table of raucous young men, we start chatting, Jason's jacket and bag providing a makeshift noise shield for the mics.

Jason:

The simplest way that I would describe it is just being playful. We had to un-adult ourselves and and try and think back we were looking at our kids, we were looking at what Artie was doing what Evie was doing. six and three years old. What were they doing with Oma that she was enjoying? And how could we mirror that ourselves? And we discovered pretty quick, that if we just got over ourselves of the worries of the pandemic and the complexities of caring at home, and we just played and you know whether that was Megan and Oma and Evie sitting at a table playing a game of Go Fish for an hour,

Megan:

Or making fake cup of tea or playing with playdough Or sorting Lego or whatever it was, you know, activities, that

Ailsa Wild:

Hashtag Mum life. So much sorting Lego.

Megan:

Like her dexterity was really shot so she would sort all colours for us. And we'd make these amazing things because you could actually find the bits that you needed. And that was easier for her to do with her arthritic little fingers.

Ailsa Wild:

And that would have been an integral great kind of OT for her as well doing that kind of Yeah, yeah,

Jason:

I think we sort of gamified it a little. Yes, the playtime became a break time in the family. Yeah, we didn't have to have some elaborate conversation about something we just sit and be present in the moment. And regardless of the ages of who was sitting around that activity, it was like something we could all take part in, you know, when another example is when Oma was having falls and she couldn't go and do her gardening outside anymore. So then we started doing gardening and little teacups. So we'd find spare teacups and we just put rocks in it and sand and some little succulents and, but just that activity of doing that, and then it's a little story that would unfold as we're doing that little conversation that would play out those little things that the memories I think that I hang on to the tightest because they're the most special. Those are the benign moments that just popped up in the day.

Ailsa Wild:

I wanted to know how it started for them. When Oma's diagnosis became something that they were more involved in. So when that diagnosis happened, did you have a sense of what it was going to mean for you? For your...

Jason:

Not really. I mean neither of us really had an experience with dementia ourselves. I mean, we kind of had a very broad understanding what most of the community would have is like, I just become forgetful. Yeah, we didn't really even do too much reading around it. It was just like, we just get used to this. And it's just we just have to be her memory. Yeah, we just have to remind her and prompt her and surrounded with lots of love. Yeah. Which I think is, is a great picture to have and what most people would think, you know? And perhaps, if you knew the whole picture, right from the get go, you may not be as keen or as willing to, you might be more scared about entering that kind of a care model. Because it's like anything, if you if someone shows you, all the scary stuff right up front might become more challenging for you to be able to find ways to take that responsibility on. So I'm a little bit more glad that we kind of had that sort of naive perspective, almost when we started our journey.

Colm Cunningham:

What Jason is saying here is something I've heard many times before, there is the perception that the knowledge of what the future holds can be an overwhelming and a frightening prospect. We saw that any Ailsa's conversation with the young people at the school. And with Jim not actively seeking information after diagnosis.

Jason:

Yeah, we've definitely had a few conversations, we had a really good relationship with a family GP, that GP had been the family GP for years and years and years. And he was more used to the family GP was used to me coming in and sitting with mum, during her consults. So there was a growing dependency I think that he could see in those visits, you know, I had to manage Oma's medication or make sure that I was coming in and explaining what was going on health wise, with Oma to give him the full picture. And as time grew, as time evolved, he could see that that was a growing dependency. So I think I mean, he pretty much knew the signs of what was going on as well. He was just waiting for us to come to the party and say, look, I think we want to explore this a bit deeper. So he did that the right way, I was really, really happy with the way that that diagnosis happened and how he supported that.

Colm Cunningham:

In their documentary, and as we listen to Jason and Megan, it's clear that community care played an essential part in how their young family was able to have to live with them.

Megan:

So yeah, there's, there's obviously a lot of administration, a lot of the boring stuff that goes along with caring for someone with dementia, a lot of that sort of fell on me. And then Jason had this really kind of creative kind of caring role in our in our paradigm, that meant that Oma was always always sort of her happiness cup was always filled, and I feel like I was probably part of her wellbeing cup like, and we were able to work that together quite quite well.

Ailsa Wild:

There is a series of scenes in the documentary, where Megan is trying to organise respite care for Oma, she calls and calls, pacing the backyard and being rejected over and over again. And at the same time, you can see the other work of care that still needs to be done around her. The children need feeding the dishes need doing Oma needs attention. There's so much logistics that need to be done to ensure that people are cared for properly. And it all takes time.

Megan:

And from just outside our little e-cosm of our own house, we have my mum and dad that were really integral and a lot of that care, neighbours, Stella down the road at the local cafe.

Jason:

It's quite incredible, like how many people you need around you to make a decision like this work well. And I think that that was the thing that really became very clear for us was our reliance on our immediate neighbours to either side, our reliance on the people in the local shops, the chemists, right, like such a broad circle of people that we were really, really dependent on as a family in taking on those care decisions.

Ailsa Wild:

This conversation with Jason and Megan was one of my first on the podcast. I realised now looking back at it, how so many of my following conversations with various experts, or even listening to Colm was foreshadowed here. When Colm spoke with Mary Marshall on design and how the environment can be enabling and disabling, I saw that here. Jason and Megan went to great pains to ensure that Oma had that kind of independence, even while living with them. That bit we heard right at the start of the episode was about how they tried to maintain Oma's routine of going to the shops by recreating it in their home. But there were times that this was a huge challenge as well. So you made a decision to bring Oma into your home. And I was just you know I was really interested in watching her trying to figure out how your home was laid out? Because she's got her own little kind of apartment in your home.

Jason:

Yeah, We had a granny flat,

Ailsa Wild:

And she's got a doorbell.

Jason:

Yeah, she got a doorbell. So we put that doorbell there. Yeah, as a way, so she could maintain her independence in her own space. But knowing that there was a really easy way of getting help really quickly when she needed us, and we figured a doorbell sounded like a more friendly sound, than a buzzer or some kind of alarm sound or something like that. So, yeah, that doorbell was was a sound we became very used to hearing.

Ailsa Wild:

And so as she kind of as her memory deteriorated, did she keep pressing that doorbell? Was there a point where she would just open the door and come down the stairs?

Jason:

Yeah, yeah, we

Megan:

had both of those. Yeah. So the doorbell was really too for because we did have those adjoining stairs. So it was a safety thing.

Jason:

I think I was just going to add the fact that it's funny because we think yeah, we'll add a doorbell to the internal door. And that'll make it easy for to get help. But then we realised Well, that's something we have to teach what she needs to learn how to use as well. Yeah, it was yeah, it was an odd thing, right. So it was like, whenever she'd come walking down the stairs unassisted, we'd be like, Ah, Oma you've gotta press the bell and we'll help you down the stairs. Oh, what bell? What bell? Yeah. So remembering that that she had a limited capacity to learn that routine as well. So we have to surround that activity with with lots of help and lots of colour, lots of signage, even having an internal lock on the door joining our granny her granny flat and our home together, so that there was a just a pause there for her to stop and go Oh, that's right. I'm gonna press the bell. Yes, big arrow there. I press the bell, then they'll come.

Ailsa Wild:

That's a little gut wrenching moment. You're watching. Very controversial. Yeah, through that lock on the door and just having got to that point in the document, you can tell it's what's needed in terms of practicality, but it's just kind of devastating.

Jason:

It's safety you know, we couldn't believe that she'd Devastating. found her way. Through complete darkness, down a set of very dangerous stairs into our house was wandering around in complete darkness at 2am one morning.

Ailsa Wild:

I suppose when you're close to someone who's experiencing dementia, there are a whole series of moments where you see that person losing their independence. And for lots of us, there's a horror around that. It reminds me of the moment with my own Nana, when she couldn't be in charge of her sleeping pills anymore, and was told she had to take them at 8pm before the nurse left for the night. I remember the look on her face when she realised she would no longer have her evenings. One of the things I've been looking for as I do interviews for this podcast is times and places that people feel independent and make choices but are kept safe. In Oma's case, one time this happens is actually when she goes into residential care. So then, the end of the film, she's just moved into respite care. And I guess you can really tell, it looks to me like that was gonna work for her you can kind of see design wise, again, just thinking about the design of a space and how that's gonna work for someone who doesn't have memory. Do you want to what, how was it when she moved?

Jason:

Look we tried to make her her room like a safe haven. And we tried to design the interior of that room with her furniture and her photos and keepsakes in pretty much the same layout as what she had in her granny flat. And we figured by creating that environment or a room as familiar as possible to her as what she'd lived in at home. That that would give her a safe haven. And it did, as soon as she walked in pretty much from the first minute she walked in that room, she thought she was actually back in her granny flat.

Ailsa Wild:

You can see it in the documentary. It's like her body feels relaxed.

Jason:

Exactly. And that gave us confidence. Then straightaway, that was a huge lift for our spirits. When we saw her respond to that. She had beautiful, natural light in her room. She had a gorgeous little balcony, she had a good view to a garden. So for me all the things that she really valued and had grown accustomed to having at home, were replicated in that environment. And that went a long way towards giving her confidence in that space and trust in the people that were around her.

Colm Cunningham:

Oma passed away at the start of 2022 and Jason and Megan have not only shared the story of almost life with dementia, but also the pain and impact of her loss on their family. Coping with the loss of a loved one with dementia is so hard. But for the carer who has spent so much of their time being present, it's an important topic to discuss. Ailsa asked me about this in one of our chats.

Ailsa Wild:

I guess the other thing I'm thinking about is, you know, just culturally how we cope with big bad things, you know, like, death. And that, you know, when ig bad things happen to people. And for some people, it's too much and they want to turn away or they don't, they feel like they don't know what to do. And they feel like they're not going to be the right person to, to actually be there.

Colm Cunningham:

I think one of the other things this is triggering, because you've obviously talked about the fact that you know, the person with dementia is likely to die before their carer and the other part of their shrinking world is that when, when they're left alone, when a when their loved one has died, it's really challenging because their world has shrunk, and the people around them who are still supporting them. Their world has been defined by the care of their loved one. And I don't think we do enough to as a society to support them and what next. Here in the UK, Sheffield University did a really brilliant project where it brought together carers, six weeks post the loss of their loved one, to help them with that transition. To think about do you want to put that chapter of your life aside, now? How do we help you move on to the next chapter? Or do you want to be a campaigner? Do you want to go into caring, you know, so and I think that that's one of the things that we shortchange carers on is how do we support them when they given so much in supporting the person they love in their lives? Post that.

Ailsa Wild:

Yes, and now that particular role is over. So now what?

Colm Cunningham:

This is a last episode in this 2022 season of The Dementia Podcast. We hope that you've found the stories, insights and content that we've shared, useful and informative. For the Dementia Podcast Team, we're just getting started. In our next season, we look towards care, and there are many forms that it might take. We hope that you'll join us on this journey. The Dementia Podcast is produced by Joel Martin. Editing by Sally Grosvenor. Mixing and technical support for the Dementia Podcast is done by Neil Blanco. Fact checking and research by Gina Pirello. Dr. Narelle Yeo manages the music team and is also the composer for this episode. Composition for the series is supervised by Erin McKellar, who's the composer of the Dementia Podcast theme. Our website is dementiapodcast.com. To keep in touch, be sure to follow us on Twitter at @dementia_centre or email us on your thoughts at hello@dementiacentre.com. The Dementia Podcast is a production by HammondCare's Dementia Centre.