Cuppa Q&A's

The Complex Parent - finding comfort and belonging

• Opal HealthCare • Season 1 • Episode 1

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Are you supporting a loved one who is complex in nature? If so, you may be wondering how they would cope living with other people. In fact, you may be wondering whether residential care would work for them at all. Our first guest, Jan, grappled with these questions and concerns. Join us as she talks about her experience moving her mum into a Care Community.

Megan:

Hi, it's Megan and Jason. You may know us from Oma's Applesauce and we've teamed up with Opal HealthCare to bring you the Cuppa Q&A's podcast series.

Jason:

Now you're probably wondering why you're hearing us driving in the car. That's actually a good question for you, Megs. Where are we off to?

Megan:

Well, we're about to arrive at Jan's home. She's agreed to have a chat with us about her and her sister's experiences caring for their beautiful mum.

Jason:

Alright. Well, I better keep my eyes peeled for a parking spot then. Good morning, how are you? Thank you.

Megan:

Welcome to episode one of the Cuppa Q&A's podcast. We've arrived at Jan's home. She's just boiling the kettle and we're just getting ourselves organised, so grab a cup of tea, a comfy seat and let's have a chat with Jan about her shared experience of caring for a loved one.

Jason:

So, jan, thank you so much for agreeing to have a chat today.

Jan:

Yeah, glad to share it and be of help. You know, if it can be for anyone else, you know, because it is a, it's a hard time. We want to do the best you can for them.

Jason:

Yeah, describe to me the mum you knew growing up. What was mum like? What's her personality like?

Jan:

Probably a bit distant, a bit chip on the shoulder and not very approachable for a lot of reasons.

Jason:

So this is really interesting because when someone's quite complex in their character and in your relationship family-wise, it makes it even harder when you think about placing your loved one into care, like how do you approach?

Jan:

I know, that was one of our major problems, my sister and I, when we were deciding what we were going to do. When it came to this stage where mum would need some assistance, and the first thing we thought is, she's not going to get on with people.

Megan:

And how are you going to approach her?

Jan:

Exactly, and how are we going to tell her that she's going into care? Yeah, you know this is going to be really difficult.

Jason:

Your mum had a mild schizophrenia diagnosis and as well as dementia.

Jan:

Mild dementia yes. Her sister Enid, who is younger than her, is quite advanced in her dementia but with mum it's not as bad. I don't find she still recognises me, my husband, the children and you know a lot of, I think, more recent happenings is harder for her. She can remember, of course, in the past and you know a lot of nice memories. We talk about those nice things, yeah.

Megan:

And so then, how did you approach the, so you were obviously thinking between you and your sister that you, she, did need to move into some form of Care Community, but then with the diagnosis and her well-being, kind of excelling.

Jan:

Yeah, well, it made it easier, I must say, because we were getting to the stage where we did actually bring in meals on wheels, which was fabulous because we knew that there was someone going there every day around lunchtime checking on her, taking her a hot meal, because I was cooking her meals, taking them, freezing them, and she was taking them out, but I noticed that she wasn't always finishing the meal, putting it back in the fridge.

Jan:

So we got meals on wheels. So we knew that, yes, that she's having her hot lunch, and she was religious with breakfast. She would get up and make her weetbix and banana and tea and toast. We knew she would do that because it was so repetitive. But the meal, cooking a meal then became a bit of a problem. So meals on wheels came in and that was fabulous. But then we noticed that she was getting terribly lonely, and it was not long after that that we had this diagnosis done as well, and that's when we decided I think it's time now she will be more accepting of the fact that we're going to put her into care.

Megan:

Okay and what did care look like for you? Was it location?

Jan:

She was on her own. She had been since dad passed away in 88, so she'd been you know all that time on her own and I thought how nice it would be to sit down at night and have dinner with someone every night.

Jason:

So you and your sister essentially co-cared for your mum for a month.

Jan:

Yeah, my sister moved to Queensland so basically I did most of it. Gail's always there supporting me in every step of the way, we speak maybe three times a day. So she was very central in, you know, organising everything for mum. She did a lot of the paperwork, a lot of the research and, you know, took care of that for me and then came down when we had to move mum and got her settled and yeah,

Jason:

Tell me about your first impressions. What did it feel like for you when you went there?

Jan:

So welcoming really.

Jan:

Yeah, yeah, the team was wonderful in getting her settled. Her room was already. All we had to do in was move her personal items, in which she had which I knew that she loved, and she had everything that she needed, her little items. She had photographs and knickknacks and things that I knew that she loved to look at, and so we were able to take all of that for her. A beautiful recliner chair, everything you know sort of around her. That made her feel like she had brought a part of home to the lodge.

Jason:

that great Because I remember with my mum One of the things I was really fearful of was taking my mum had quite advanced dementia and taking her into a new room where that environment felt unfamiliar to her and I didn't know you could bring in furniture and keepsakes and things and that was a great comfort.

Jan:

I know I had things that they're familiar with and that they love and they've looked at forever and mean a lot to them and I think that was. You know, that was good because it was like moving part of the house with her, even though it was only a room, but she had an en suite and a balcony like a little veranda. She could put, you know, an outside sitting on and it was very nice, very, very nice. But the staff were there to help all the way. They were wonderful.

Megan:

Can you give us a bit of a picture of what the community was like for your mum?

Jan:

It was, I think, for me a bit magic. Everything was there, it was lovely. It was just what I would hope that if I went there, what I would want. They have a beautiful room with a piano, television, comfortable chairs, somebody coming to do music. They're constantly being looked after, having their nails done. I think they have six meals a day. It's just wonderful. I said book me in.

Jan:

But it was lovely because it was open, it was beautifully furnished, the tables were set, everything was done. There was nothing really that you would say not too keen about that. It was all there and when you walk in that's what you see. Then, of course, all the residents have their own rooms with everything and they can come and go as they please. If they don't want to sit in the dining room or the lounge room they don't have to they can go and sit out in their veranda or have a lay down. But there's so much going on and that's what I loved about it. There's always something happening, particularly with the lifestyle coordinators always keeping the residents busy. They're painting or they're doing craft or they're exercising or the physios there, and they're not sitting around doing nothing.

Megan:

Do you feel like that was part of the expectations that your mum had about?

Jan:

I didn't realise there was so much there for her to do and I think that's why she loves. It is because there's always something going on. She's not bored, they're not bored.

Jason:

What has that done for you as a daughter?

Jan:

It's just lifted this huge weight off my shoulders, worrying about how mum's going to be, because I know that she participates in all of these activities and I've got a book of paintings that she's done. I never knew she could paint. It's just amazing and the whole family have been amazed by these beautiful pieces of art that she's doing. I know it's assisted, but still it's just blown me away. She's like I used to love painting. Jan, I've gone, okay, mum.

Megan:

I've never seen that before. Keep it up.

Jan:

It's fabulous, it's so beautiful, it's just beautiful. They do craft, they paint, they exercise. They've got cats running around and it's just beautiful to suck home really.

Megan:

Was there anything that you ever had reservations or that you were concerned about when she did transition? Was there any worries that you had?

Jan:

The only worries I had was how was she going to get on with everyone else? Because that had been the problem that we'd have right throughout her life. She wasn't a welcoming friend or social person, but she sat with all the ladies. They all had a gossip every night you know dinner and she had friends that she would gravitate to and they all loved her and it just blew me away. I thought I didn't have to worry about that.

Megan:

Obviously, you're worried about your mum moving in and that's a big process in terms of transitioning. The flip side to that is you making all of that happen and you and your sister making all of those things happen. How did you find that process of application and there's a lot of paperwork. A lot of paperwork, legendary moving parts in the background there are yeah, gail was fantastic with all of that.

Jan:

She kind of like said let me do that side of it for you. I want to do some part of it, I don't want you doing everything. And she did all of the research. She had a lot of applications to other care homes at the time, but we did particularly want to go to Killara, where Aunty Enid was, so that they could be close by to each other, and so that worked in the end. But yes, there is a big process with paperwork and Gail being so meticulous with that side of things. She got it all done and, yeah, we got our call to say, yes, we'd like to have mom. So that was just wonderful.

Megan:

And so how did you transition from now mom has moved into a care community. How did you transition in terms of? You know, like care is often experienced a lot of guilt and relief and some really emotions that are really unfamiliar. They kind of sneak up on you.

Jan:

Yeah, I guess my concern was. The only really concern that I had was that she's not going to get on with everyone. That was the only concern. But it didn't take long for me to realise that I don't have to worry about that anymore. I don't have to worry and just to know that she's safe, she's being very well cared for in all aspects and she's happy.

Jason:

It sounds like you've got your mom back. I've got my mom back.

Jan:

Yeah, I have. I've got my mom back and it's so lovely. It's really really lovely. Yeah, I feel like I don't have any concerns. I'm happy, I'm content to know that she is safe, she's happy, they love her there and, yeah, it's just wonderful.

Megan:

And you have a better relationship with mom now.

Jan:

Absolutely. So I'll go over and grab mom and wheel her down to the cafe and we'll have a nice coffee down there and she loves it. Just easy, something simple as that. When, before she had a fall, mom had a fall and broke her hip. It's a lot harder now to get mom around because she's in a wheelchair, and before that I would just go and pick her up and take her out and we'd go to the club and she'd have lunch and we'd go shopping. And she's a different person, totally different person.

Jason:

I'm curious from that moving in stage, like how was your mum in those first few days, weeks? Were they tough?

Jan:

No, no, I don't believe so. When she realised that she was with other people, she had her things around her. She had all her massive wardrobe full of all her clothes, cause she was, like, you know, the clothes princess. You know she just had every color of every version of every top and dress and whatever, and everything of hers was there and she could see her stuff there and she had, you know, no worries. And I think because she knew that things were getting a bit tough at home and that she did have to maybe get up and cook a meal or, you know, do different things. She didn't have to do that anymore. And so that transition for her. You know, of course it's strange when you move into a different environment. The first couple of days are very hard, but there was no problem. She didn't really say, jan, I hate it or I want to go home, or no, she loved it.

Megan:

So can you describe a little bit around what your mum's care team is like, sort of day to day and as a whole organization?

Jan:

Care team that look after mum are just amazing the RNs, the nurses. You know any change whatsoever. Yeah, there would be a phone call and if they couldn't reach me they'd ring my sister. So it was not okay, I'll leave a message. No, they'll get hold of somebody and speak to them, because if they need to be informed of something that's happened to mum particularly when she broke her hip what had happened. Mum was never wanted to sit still, so she'd be up and down 400 times a night. So she actually got up during the night and tripped on something, I think her slippers, whatever went down and broke a hip.

Jan:

So as soon as they went in and found mum, the care was there, the ambulance was there. The call to us was there to let us know that that had happened. And they would never sort of just ring me. Don't worry about it, they would ring Gail, they would ring my husband, whatever it would go down the line. The communication line was incredible. So we would never not be able to get in touch with her, never not informed of what was going on.

Megan:

So that it sounds like such a peace of mind to know that you're always going to be in the loop, always.

Jan:

And the slightest thing that mum might need to see the doctor for they have a wonderful doctor that comes to the community and to get a doctor that has that mindset of looking after older people and mum loves him. The minute there's something wrong they'll be on the phone, Mum needs this, or mum needs that, and even medication change or anything like that. I know what's going on, so there's nothing that I don't know is going on with mum and I ask her all the time are you happy? Oh, yes, I'm fine, Love, don't worry about me. That's what she says all the time, which is so nice. It's so, I don't know, just refreshing to hear that.

Jason:

It sounds like it's given your mum like a new peace of mind as well, like through that loneliness, through that stage of life, that sounds like she's actually found something that works really well for her choices.

Jan:

She's found that and I think, knowing that there's someone there all the time, should she need someone. They're sort of just outside her door constantly so there's a RN sitting not far outside mum's door so that's peace of mind. Yeah, for me too.

Megan:

Yeah, so one of the big things that's often talked about is meal times and dining experiences and how and you were talking about mum with meals on wheels previously and that that was working well, so, moving into a care community environment, how did she go with food and meal times and dining and being social?

Jan:

Yeah, it's everything. Yeah, I think there's like six meals a day. Yeah, I have breakfast, morning tea, lunch, afternoon tea, dinner and supper. Oh wow. So she's there for all of them, yeah. And when I've been there, the meals absolutely beautiful, mm-hmm. There's always cake or biscuits with a cup of tea, and it's hot, it's lovely. And then the lunches, you know, you can pick whatever you want. Yeah sandwiches, salad, whatever mum eats, everything yeah she loves and socializes at at meal times.

Jan:

Yes, well, yes, because they all sit in the dining room, yeah, together and have dinner and always. Mum will never say no to dessert. She'll always have everything that's put in front of her. Yeah, so she's. She's an easy person to feed. Yeah, she'll eat anything. Yeah, she loves her food.

Jason:

I remember one of the things that we were worried about initially was you know, does mum have to eat in her room or does she have to eat, yeah, in a common area with everyone? Or like is there choices there?

Jan:

and there is right, there is there is, you can choose if you want to have your dinner in your room, but I think most, I think, for the people that are a little bit not so mobile, they will have dinner in their room, but for everybody, everybody else, yes, they all come together, they all have dinner together and I think it's a social time and they all talk together which is important, I mean that's in our house, and that was that was our social time.

Jason:

Was the dinner table? Yeah, regardless of where you've been during the day, at night time, that was the moment we all came together, we chat, and that was true when we were looking after mum at home too. Was meal time? Was that together time?

Jan:

Yeah, definitely yeah, so I think that side of things she really enjoys. Yeah, coming together having dinner sitting down with someone, because for so many years she was doing that on her own and there's nothing worse than sitting down to dinner and there's no one to talk to yeah, but now everything's changed, like she's got all those friends around her. That's beautiful.

Megan:

So how often do you get to visit mum? And then what? What are those experiences like now?

Jan:

like how it was mum's birthday a couple of weeks ago, so Jim and I went over with cakes and coffee and everything and we had a little party in the outside patio area and it was absolutely beautiful. She just loved it and you know, the grandchildren sang her happy birthday on the phone and it was just lovely, like it was just really she loved it because Jim was there she always asked about.

Jan:

Jim, not about me, but yeah, how's Jim? Is Jim, okay, love, he's, he's got enough work. Yes, mum, he's good, he's driving. He's yeah, and what does he do? I said well, he's a new driver, what's that like?

Megan:

it's kind of like a taxi, and so maintaining those yeah, the ability to be able to just breathe in and out so easy yes, I always let the the admin team know when I'm coming over.

Jan:

Okay, that way they know that mum's going out down to the coffee shop or whatever. Every week or whatever, I'll go over and take mum down there yeah, she loves it loves the coffee.

Megan:

What sort of advice would you have for other families that are thinking about that? This is going to be an option for their parents or their loved ones. What's your advice in terms of the decision-making or how to go about placing someone into a care community?

Jan:

Do your research and go and have a look at the availability of these community homes and find out what the norm is, you know. Do they do these craft projects do? Are they occupied? They're not just sitting around. Go in and have a look around and I'm sure that they would be very, very happy with the care that's given at Killara. Definitely, because you can go in and look and see that, yes, the staff are all there, the residents are there. They're either watching tv, doing a craft, being occupied, it's clean, all of the beds are made, everything's pristine and really there's nothing that you would walk in and say, oh, I don't like that. You've got to go in there and have a look around and just experience that for yourself, and I think that's what we did and that's what we were so happy with and so, by looking at a couple of different places, then you kind of understand what your expectations, yes, become yeah yeah, all in all and on reflection, is choosing and transitioning into a care community is.

Megan:

Is it as scary or was it as scary as as you might have originally?

Jan:

no, no, it was a very pleasant experience, very, very pleasant for us, you know, and I think just knowing that she was happy there just was the icing on the cake yeah. I think that just you know, seeing her happy, you know, and walking in and she's sitting talking to friends and wow, that for me was yeah, that's all I needed.

Megan:

I knew she was content now and you can see that she was so she's her well-being is elevated.

Jan:

You can see that she's yeah and she's made a lot of friends, yeah, and yeah, she loves talking to people now, whereas before she didn't. So it's been a wonderful experience for her and we just feel so grateful um, my sister and I particularly feel so grateful that this has happened to mum at this late stage in her life, that now she's content, um, she's got people around her, she's got friends she never had before, and for me that's a great end of life experience.

Jason:

Yeah, amazing, jan. Thank you so much for having a chat with us. Hopefully this will help other families too, in in some of their questions they might have about their journeys too.

Jan:

I hope so.

Jason:

Thanks for listening to this episode of Cuppa Q and A's podcast proudly brought to you by opal HealthCare. For more episodes and helpful resources, make sure you visit opalhealthcare. com. au. This Cuppa q and a's podcast series is copyright 2023 Opal HealthC are.