Carer’s guilt – it’s all too common. The decision to move your loved one into residential aged care is full of conflicting emotions. As a caregiver, you may have feelings of guilt and perhaps you’re thinking you haven’t done enough. To add insult to injury, you might even feel criticised for your decision. How do you overcome those feelings of guilt? Catherine shares her experience with us.
Carer’s guilt – it’s all too common. The decision to move your loved one into residential aged care is full of conflicting emotions. As a caregiver, you may have feelings of guilt and perhaps you’re thinking you haven’t done enough. To add insult to injury, you might even feel criticised for your decision. How do you overcome those feelings of guilt? Catherine shares her experience with us.
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:And we're in the car about to arrive at Catherine and Errol's home to have a chat about their experience looking after Catherine's parents, who had some pretty challenging health journeys to navigate.
Megan:Yeah, I had a chat to them on the phone earlier and they sound so lovely and they've got a really interesting story to share.
Jason:Good morning. Good morning, welcome to episode two of Cuppa Q & A's podcast. We'll just play this little musical interlude while Errol boils the kettle, catherine plates our Persian love cake and we set up our microphone. So grab a cup of tea, a comfy seat and let's have a chat about the shared experience of caring for a loved one.
Megan:Well, thank you very much for letting us into your home and speaking about your parents' journey, and your journey together is looking after both of your parents, and I would love to hear initially so, your mum is at Quaker's hillside. We'd love to know a little bit about your mum as a person, not just right now, but what is your relationship with mum?
Catherine:Mum and I are very tight, very tight. She's been with me. We weren't as close when we were as young as now because she's been through all the good times and the hard times with me and we've really bonded and we're kind of like friends and she's a very kind person. She's very, very kind. She'll walk a mile in the hottest sun to visit somebody who is sick. She'll cook relentlessly for people. She's always there to come and help us with things. So was my dad Always there to help us. Very kind, very generous and very loving with the grandchildren. Love the grandchildren.
Megan:And your dad. He had a health journey as well that he experienced towards his end of life. Can you tell us a little bit about that?
Catherine:Yes, dad wasn't aware. He started his feet and ended up that he had Parkinson's and we had a lot of tests done and slowly, slowly, he slowed down and he just wouldn't give in to it. He put rails on the walls so he could hold, refused help. I bought him walking sticks. I bought him a walker. He had a disability scooter. Refused help because he was a man and very independent, very strong-minded. But it was cruel to see him go down because he was such a hard-working person. He was gardening, very independent, very strong, hard-working guy. So to see him like that was really heartbreaking.
Errol:He came with Mr India, didn't he? Bodybuilder.
Catherine:He used to \weight lift.
Errol:He used to get coins in his fingers and just bend them like that.
Catherine:And in the end he couldn't swallow.
Jason:It's astounding when you see such a strong parental figure, someone that you've grown up knowing that is so strong and solid, just crumble into illness.
Catherine:It's devastating. Eroll used to jerk with my dad and say, oh, you're going to live to 100. You're going to. What did you say to him?
Errol:Something to that effect live to over 100.
Catherine:But it was a little bit of a dig, you know. So he'd have a laugh. But after a while my dad started thinking he's wanting me to pop off, but dad lived till 95.
Megan:95, yeah good age and lived at home until 95.
Catherine:He lived at home until he was 93. And just before his 94th birthday we moved into Quaker's Hillside.
Megan:And did they have, even though for a period they were living independently? Were you both helping, or did you have in-home care package, or how did that relationship work?
Catherine:My mind was like a blur. I'm thinking what do I do next? You know who do I ring?
Catherine:But we had been through a number of different agencies and eventually got onto one that was really good.
Catherine:Morning and night we'd have an hour, and Monday to Friday we'd have a lady go in there at 9 o'clock till about 1 o'clock and that ended up not being enough because my dad would still think he could walk and even though I got him a lifter to lift him out of bed, lift him to the chair in the lounge room, lift him up, take him to the bathroom, you know, he still thought he could walk and so he used to fall out of bed and luckily we had provided that vital call. So I'd say, dad, press the button because the ambulance would get there before us. So he'd press the button and vital call. But it was very, very hard to get enough care for Dad and it got to the point where the carer said to us that you need to have two assists. It's too much for one person and I looked into having a full-time living carer but it was very, very expensive. So and mom and dad didn't really want anyone living, stranger living in the house with them.
Jason:It's really tricky when you know how proud they both were as people, as individuals and as a couple and as a heads of the family. You know you want to try and help them maintain that autonomy and that independence as long as you can, obviously at home. How did you find yourself supporting them as a daughter or as a carer your self? What was the ask on you?
Catherine:The visitations, the doctor's visits, the hospital's visits, the medication, the organization of carers, who would sometimes come at five o'clock instead of seven o'clock, you know, just sitting with them, shopping, all those things you know I would do. My brother would do the visiting. He'd do the garden. We tried our very best. Because one time a couple of years ago, the doctor said in the hospital dad went to a hospital and he was there for about three weeks or maybe four weeks, and the doctor, the specialist, got all the nursing staff in to a meeting and they said your dad needs a nursing home. My brother was privy to that conversation via the phone.
Catherine:And well, the day before dad was going to Quaker's hillside. My dad refused to go. My brother was in tears, so I said OK, so I relented, put him back in home. But he lasted two years and when mom went into hospital with sepsis we could not do it and the ambulance came and he fell out of bed and they said you can't leave your father home alone. There was no place for us to sleep because mom wasn't sleeping in bed after a stroke she only sleeps on a chair and so we just couldn't handle it anymore. So I said to my brother. You know now is the time, so dad originally thought he was going there for a little while, but we knew that he was going there permanently.
Errol:Perhaps you should mention that the ambulance people actually called it elder abuse if you left them there by themselves. Just depending on people coming in the morning and the night and us in the town. But we're not there all the time.
Catherine:Yeah, we can't. We just could not handle it. It's heartbreaking to see such a strong, independent man to live that way.
Jason:It's heartbreaking having one parent going through a journey like that little and having both parents unwell at the same time. I can't even imagine what that felt like on both of you. It's such a huge strain on you as a son, daughter, just as a couple like it's huge. So your dad went into care first?
Catherine:Mom went and she had a half brain stroke left brain stroke in 2019. And subsequently she has a thing called aphasia, where her language is very badly affected and so it's hard to understand mom. So mom was there. She loved it there, she really liked it. It was a bit, yeah, she loved it there and she wanted dad to move in, but dad was determined he was going to go home and he wanted mom to be with him. So family pressure they both went home, yeah, but as we were leaving, the care manager, mary, said to me you'll be back.
Jason:She'll be back.
Catherine:And true she was.
Jason:That's really hard when the family dynamic has shifting priorities there in respect to what's the right decision for mom and dad. How did you cope with that in yourself?
Catherine:I was really broken because when I dropped dad home, once you know you have to undress him and then he's standing at the door there he says you dumped mom, dumped mum in the home. And the way he said it it broke my heart. I was trying to do the best thing for them, not for us, for them. And he said that to me and I didn't know what to do. I really didn't know what to do. I tried my very best. I used to visit mum every day and that was not enough. I used to take dad there Monday to Friday, and then Michael, my brother, would take him there Saturday and Sunday because he was working. And just what more can you do? What more can you do? And it's not like it happened just a little while, it was just like ongoing mental stress, Ongoing mental stress and physical stress.
Megan:So was there much of a journey searching for a care community for your mum and dad, or did you already have Quaker's Hillside in mind?
Catherine:I actually did volunteer work at Quakers Hillside and I got to know the team and they are beautiful people and because I got to know them and the place, I wanted mum and dad when it was their time to go there. But my brother, after my mum's stint, he was very aversed to doing that. So I got him involved and we visited a number of communities and some were very, very sad, very sad, and he decided that yes, that was the place. So we did a lot of looking and this is the place we chose. Came back to my choice.
Jason:So mum was in respite care and then came back home?
Catherine:We thought she was going permanently and she thought she was going to go permanently there, but she stayed there two months and then she came out and dad could hardly look after himself and he was telling mum he was going to look after her. So, with all the carers and all of us four of us just rushing there constantly to fill the gaps and it was just impossible. So when mum went to hospital with sepsis what year was that 2021? In June we actually put dad in there because he couldn't stay at home. So when mum came out, I've actually got video. Oh, the team was so beautiful. They had my dad, we planned it, we had my dad there and mum came. Mum was in her nightie and her dressing gown and we brought her from Westmead hospital and we brought her there and mum was so overjoyed to see him. And the reunion I got her on video Little video, and they're so lovely over there and yeah.
Catherine:So mum went in and my brother said we can't afford to have the house and mum and dad in care and mum wouldn't leave dad. So we put them both in care and had to sell the house. And we sold the house in August.
Jason:So you lost dad in August last year.
Catherine:We lost dad in August and I was heartbroken. I was thinking, you know like you want your parents to be at peace. You know you don't want to my mum crying constantly. You know, so devastated that you can't live with us. You know, and she has many, many health issues and physical problems and had many serious out of few serious falls and we can't manage that. You know we can't manage that. You need the doctors. You need the doctors, the nurses to attend to and you can't do the 24-7. No.
Jason:It's so hard when your parent is not able to take in all those wonderful activities and things that they do organise. What do you see the care team doing that makes your mum's time there meaningful? What is she able to enjoy?
Catherine:Mum loves one-on-one. Ria in particular, and Mary, the care manager, and Elsie at the front desk. They actually spend time with her one-on-one. I'm sure a lot of other people do, but these are three people off the cuff that I know. And mum needs that one-on-one. One-on-one chat Because otherwise people are talking. She does not do what they're saying. She needs that reassurance, just that reassurance. She loves hugs, you know. So the ladies that do that, she loves it and they become her best pal.
Megan:But you feel like the beautiful team that is at Quakers Hillside, like you feel okay leaving and coming back to mum, you feel like you trust them.
Catherine:Well, I wouldn't have left mum and dad there, because it's only that I experienced them when I was a volunteer that I experienced the caring-ness of these people, and it's a lovely place. You know, I don't know how much it costs them, but they change around the decor. You know they do that to refresh the place. They have balloons there for the people they have. They started to have little functions again for them. You know, they try their very best, but mum has this sun downing that you can't avoid and she just needs time to. If I'm there and she has it, I try and get her into her room so she can have a little tantrum and then we settle her down. Then she feels really sad that she's done that.
Catherine:One day I left her in a room. She told me go go, I don't need you, go away. So I left her in a room and I was like choked that my mother was telling me to go and I walked out and I got into my car and I was sitting and next thing my mum I don't know how she, I think somebody was coming in and next thing my mum bolts out the door with her, with her walker, and she's standing there looking at me and the spoiled nurse has chased her down and she's standing there trying to say you know, come back inside. And she's looking at me and I saw my mum. I thought, oh my God, you know my mum. She's chased me. Yes, you're in trouble. No, I love it. I went back and I saw my mum and I said mum. And I gave her a hug and said mum, what are you doing? She says I'm very, I'm sorry. I'm sorry, baby, I'm sorry.
Errol:But you are one of the few people who can talk her off her ledge. She's not like she's really bad. She's the only one with the patience, I suppose, who can talk to her and persevere with her and make a few promises to maybe take her out tomorrow or whatever. She's the only one that can do it. I don't know how they do it, Even the nursing staff. They've got so much patience.
Jason:Catherine, you shared with us previously an experience you had recently in a shopping centre car park which really rattled you. Are you comfortable showing that story, Because I think it's a really important one to talk about?
Catherine:Yes, I take my mum shopping twice a week because my mum's always a shopper. She was a daily shopper. Nothing could keep her from the shops. So instead of bringing, I used to bring her here for a while, but she would be crying all the time. Let's take a shopping and I get her to touch things and smell things.
Catherine:So anyway, so I got mum into the car and there was a lady watching us. She was waiting for a space to park so she parked her car, double parked her car, and I helped mum into the car and I was trying to get her wheelchair into the car and with my back problem I sit on the tailgate and I try and fold it down and this lady came up to me. She says oh, you're very good, very good. Is that your mother? I said yes. She said very good daughter, very good daughter. Oh, she says to do this, you're wonderful. And she was complimenting me and I said thank you very much. And she says my mother is all too, she lives with me. I said oh, that's lovely. And she says your mother lives with you. I said no, mum lives at Quaker's hillside. Off, she went. You put your mom there in a home.
Catherine:You put your mom in a home. She says I would never put my mom in a home. Oh, and she just went off at me and a space came, became available. Traffic needed to pass. She said, wait here, I'll be back. Yes, so she drove, was driving a car into the parking space. Never seen me whip that wheelchair back into my car so quickly. I got in, slammed the back shut, got into my car, drove off. But that made me feel terrible because all this guilt I've got inside, putting mom in the nursing home, first saying that she was dumped, then putting mom, dad in the nursing home and mom selling their home and people criticizing my mom, me for strangers, strangers criticizing me, like that, I mean I've got plenty of guilt, plenty of guilt.
Megan:Yeah, why do you feel like there's such a stigma against placing someone into a home, like she probably would have used the word nursing home? Yes, why do you feel that there's such a stigma around us placing people into our loved ones, into care community?
Catherine:That is a great question. I think we've all got this old idea of nursing homes. You know where they were daggy little places, smelly, old, unkempt. You know people put their family there and forgot about them. But that's not the modern day home. That's not the modern day home.
Errol:And they're experiencing now.
Catherine:It's not my experience with hillside, you know. I looked at other places and there were one or two like that. I wouldn't put my parents there. But this place, it's not my experience and I think we need to change. At the times, you know, like you look at our children and I couldn't. I've already said that we will go into one when it we need it, because life is very busy. Nursing homes are not what they used to be, you know, and I understand why they don't want to be called nursing homes, because they aren't. It's kind of like a lifestyle place. You know they have entertainment. I would be involved in everything the mini golf, everything, everything, what?
Errol:What about the food at Quaker's Hillside?
Catherine:The food is great. My mom, my mom first the doctor there got her weight under control. She's gone from 98 kilos to 69. That's still a lot of weight for somebody who's now shorter than me. But I look at her food and sometimes I want to take her out for lunch. They've got salmon and prawns for lunch I'm thinking. Errol said to them, he says I want to live here, you're eating better than me, yeah you're looking at all the lovely food they're eating.
Catherine:It's a healthy, balanced diet and they're allowed to have a glass of wine if they want. And one day I took a bottle of wine because I've gotten. I asked them to put mom with a lady. And a lady has come, a lovely lady, Alice. She's come and sat in mom's table, very caring lady, and she mentioned she would love to have a drop of wine. So I said you can have a drop of wine here, They'll give you a glass of wine. She said I didn't know that. So one day I got a nice bottle of wine and I took it in and it was a lovely French wine, French rosé, and I said come on, we were having a picnic out the back so we took our lunch, mom and Alice's lunch. We sat outside, so we're all sitting. I actually had a little bit. We're all sitting there enjoying, on a lovely summer's day, a glass of wine. This is lifestyle.
Jason:Catherine, Errol, thank you so much for inviting us in your beautiful home and sharing your story with us. I'm sure it'll help a lot of families in a similar position to navigate their journeys too. So thank you, you're very welcome.
Megan:Thanks for listening to this episode of the Cuppa Q&A's podcast proudly brought to you by Opal HealthCare. For more episodes and helpful resources, visit opalhealthcare. com. au. This Cuppa Q&A's podcast series is copyright 2023 Opal Healthcare.