Carers Voices

Navigating Parkinson's & Dementia: Lisbeth's Voice

• Care Training & Consultancy CIC • Season 1 • Episode 2

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Join Lisbeth in this heartfelt and inspiring podcast as she shares her personal journey as a dedicated unpaid carer, looking after both her father with Parkinson's disease and her mother with dementia. In this episode, Lisbeth opens up about the challenges, triumphs, and profound moments of love and resilience that define her role as an unpaid carer.

Lisbeth's unwavering commitment and devotion to her parents shine through as she delves into the complexities of managing their conditions. With unwavering honesty, she discusses the day-to-day struggles, including navigating medical appointments, medication management, and adapting to ever-changing needs.

Through powerful storytelling, Lisbeth brings to light the unique experiences and emotions that accompany caring for loved ones with progressive neurodegenerative diseases. Listeners will gain profound insights into the realities of caregiving, discovering the strength and resilience required to face the many challenges. Lisbeth's vulnerability and authenticity provide solace and encouragement to others who find themselves in similar caregiving roles.

Whether you're an unpaid carer yourself, a family member seeking guidance, or simply interested in understanding the complexities of Parkinson's disease and dementia, this podcast offers an empowering and compassionate perspective. Lisbeth's story reminds us of the profound impact that love, patience, and understanding can have on the lives of those affected by these debilitating conditions.

Tune in to "Navigating Parkinson’s & Dementia: Lisbeth’s Voice" and embark on an emotional and enlightening voyage, celebrating the indomitable human spirit and the power of caregiving.

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For more information about unpaid carers please visit - https://caretrain.co.uk/unpaid-carers

Lewis  0:00  
Hello, everyone. Welcome to this week's episode of carers voices. My name is Lewis. I'm joined with co host, Cheryl Murray here and we're with Lisbeth today who? Lisbeth, would you like to introduce yourself and who you care for? 

Lisbeth  0:12  
Yeah, sure. I'm Lisbeth. And I look after both parents  my mom and dad, at home, they have dementia and Alzheimer's didn't have no different issues, but the dementia and Alzheimer's assessment was done. So they have both both of them. Dad has dementia, and long as both mums and denial doesn't believe that anything wrong. But she knows she's got a wee bit of memory loss. But she doesn't think it's that bad. So that's going to be my mum and dad is having a bit of a bad day today he's his mood is  quite different when it's actually you must be like a mist of something that comes over, I don't know. But when you can take, you know, when he's having these, you know, he's having a good day, because he's quite cheery, and he's always grateful and things as you know. Yeah. And he you know, it is quite easy to deal with. But when he's having a bad day, he's having a double bad day because his Parkinson's could be bad. And then if this whatever this cloud is with this dementia that comes over him, 

Cheryl  1:22  
is that a common thing with Parkinson's and dementia? 

Lisbeth  1:26  
Well, I dont' know  it does eventually come to that. And then especially with dad, because he's been very fortunate that he's had,he's had Parkinson's for about 18 years. And it's only really now that it's getting  worse and stating to progress but we're seeing quite a lot of changes now. And his mobility is just poor.  He has, we always know that he has good days and bad days. But when he has a bad day, no, it's a really bad day.

Cheryl  1:57  
And is it mainly with his mobility or just everything?

Lisbeth  2:01  
mainly his mobility. But then when he's when he's and the dementia kicks in and it takes over and he forgets his relator. So he forgets it is not meant to be on walking on his own will you'll find them as we do at the door, possibly outside doing things but that's Dementia side of it. So it's trying, it's you know, so you're dealing with a lot of things that's going on now.  Its a wee bit difficult today, but by tomorrow, if you've got that sense of humour, like we have another family well, tomorrow, you've got to just be you just got to laugh and hope that tomorrow he's back to having a good day. You know, so I think we use humour is a big thing, I think use humour and think I'll do what you can't change it we can't do anything about it but tomorrow is another day. So we just got to go on.

Cheryl  2:55  
and is there a pattern to good days bad days?

Lisbeth  3:01  
Not really, I can't really say that there's any from one day to the next you can't tell when that's going to come in, you can't tell at all, we used to be able to see that if he was having really good days where his Parkinson's before the dementia kicked in, you would know that it will be up and about and it will be quite cheery and you will be walking about and he'd probably to do too much. And then the next two days, he will be really tired and couldn't move. But that was how he's Parkinson's And he knew that so he would do as much as he could on the days on the good days as he called them. And then the days after that he would know that he would just have to put up with not being able to move because he wasn't able to.  But now we've got this added thing going on with dementia on top of it. And as I say it can be quite cranky and quite a different mood swings. 

Cheryl  3:55  
Is that are you thinking that you're there more often now than what you had been?

Lisbeth  4:00  
Yeah, yes. And no. We're still in touch all the time on the phone.  But yeah, we're probably I'm probably in a bit more popping in and if it's not myself that's popping in it's usual my son that pops in because the way it works in kinda, the dynamics of it tends to be my son and I that does the most of the care work.

Lewis  4:22  
 How does how does he find going in and seeing them?

Lisbeth  4:24  
frustrating, frustrating! and he's got these is learning now not, not to address his papa in the way that you know that he understands it is dementia. So you know, it's like it's trying hard to remember not to actually be  argumentumentative for them because yeah, so rather than cause anything or you know, say that he probably would have before it's reminding yourself and thinking No, but it's just frustrating. Yeah, so, so that can be quite difficult at times, but we'll get there.  Get them like everybody, we're just you know, you do you do your best to get in here and try and overcome the bad ones the bad days, you know, just do what you can. So,

Lewis  5:11  
How long have you been looking after your your mum and dad?  When When did you start? And would you say,

Lisbeth  5:17  
 um, I would see,probably as far back as 5, 5, 5-6 years now, really.  And I was living in Stranraer, I moved back, and then move back with that intention of knowing that I was probably gonna have to step up a bit more, didn't quite anticipate that it was going to happen as quick because I thought they were still quite managing, and they did manage fairly well. But they were starting, I was starting to notice things back then even that, and that's what made me realise that there's, there's probably dementia and that, you know, it's coming, 

Cheryl  5:55  
What kinds of things were you noticing?

Lewis  5:57  
Just the memory loss the things that you know, that you could ask them something, and then the couldn't tell you what it was they'd done. Or if you'd said, Oh, we did that last week? No, did you know that you really start to notice things change? And just, and it's a gradual because it's a gradual process It's not always, you know, you don't always pay attention to it. So yeah, I will probably say when I came back through about five, five years ago, and especially overseeing the bills, I think was the main thing because there were then about forgetting about them. So if there was invoices coming in, they would be they had routine to put it on the pinboard. But they've gone on the pinboard and forget about them.  So it was always just then, and I then started again, I say, oh, did you manage to get that done?  or Will, I just help you the day when appeared and things like that. So I just gonna start to do the bits and pieces like that. And I think probably up until COVID, they were still out and about, they were actually genuinely still out and about and doing things because that's just them they're active and they used to love to get away to a tea dance and dance and lochs and glen's was the thing we used to love to go away to lochs and glens  weekends away, and up until COVID They were managing it so they did really well i mean my mums 90 this year and my dad will be 88 in a couple of weeks time. So I think up until COVID If they've done not too bad, you know, they still feel that that had done to cause they cant go out anywhere now. But that's just because they've been active people Yeah, always been

 so used to going out all the time

Lisbeth  7:35  
and my dad as you know, Cheryl plays the harmonica and just loves to play for everybody and gets I used to go to join different tea dances where there were the accordion to play in and he would get up and he would do his turn with them and do that. So I liked doing that. So he still manages although he's got dementia

Lewis  7:55  
I was going to ask does he still play his harmonica?

Lisbeth  7:56  
yeah, he still plays  he still plays and he  can remember a good few a lot of tunes as well. So yeah, he's he's he does remarkably well. And that's the hard part. Because when you go in and he's having a bad day, and you can just tell his whole demeanour a whole thing, his facial expressions and everything that's just different. So you know, instantly when you're in that this is just, you just do 

Cheryl  8:02  
Is there nothing you can do to bring him back out of it? You just have to let it run its course.

From what I'm, we're gathering it just you have to let it just run. And I think what we're noticing as well it can go for a couple of days now. So you can go to bed and go to sleep and still waking up the next day a bit off shall we say.  They both I mean, I could giggle hear but it's not really funny, but you have to do to do what you can but they both have this diagnosis now. So thankfully, so far, they take it in turns. So i can have my mum having a bad day and then my dads  okay. But unfortunately my mum wasnt  great when I was in on Monday. So so now it's my dad's turn 

Do you get them both on a good day?

Lisbeth  9:05  
 yes that there odd days where we have them both okay, 

Cheryl  9:05  
rather than you having to always go and deal with bad days.

Lisbeth  9:11  
 Yeah. So we still have wee windows and you just got to make the most of those when you have them when you can. 

Unknown Speaker  9:22  
Absolutely.

Lisbeth  9:18  
 So we do we can just to help them and keep them at home really which is the main thing. Because that was the wish that was the the main wish that the they actually remain at home. They just don't want to be in a nursing home. You know.

Cheryl  9:39  
You had adaptions done to the home?

Lisbeth  9:41  
Yes

Cheryl  9:41  
Was there a new bathroom put in?

Lisbeth  9:43  
Well when they had when they moved into that house. There's a wet room so there's a weight room and there's another bathroom. So there's two they are fortunate that they've got that. Theres handrails up we've we've managed to get the ramp up as well. So we've got a ramp at the door. Not that I can really use a lot at the moment because my dad's still not able to get in and out of a car. So we can't get them in and out much. And if we, if we intend, we say that we're going to take them out in a wheelchair and take them out into the garden is not that impressed, because he wants to do it himself. So he's tending to be about digging in his heels, and then the other No, no, it's fine. I'll just say, like, to be independent, so he wouldn't let us do that. And it's maybe better, because I know when I know when my backs turned, he would just be, he'd just be doing things. There's only just a few weeks ago that we were lucky, he didn't have another broken hip because he had decided to want something out of the shed in the back and went out. And has a wee fall? twisted his ankle? And got back? How they how he managed to get up? I don't know, it might the two of them are managed and they've got backup I've got back is so stubborn. He that he may honestly, you may only will get what I'm talking about. He's just got that absolute determination. And I think it's absolutely amazing for somebody his age  to have gone through so much, that he's got that determination that it won't beat him. It just won't beat him. You know, and I think that's just I think when you look at some other people that just give up on sit and just wont like won't do anything won't even try, but Yeah, probably. My dad needs to tune it, down a wee bit. 

Cheryl  11:32  
so there is somebody in the house?

Lisbeth  11:33  
 To when its suitable. But yeah, so that would be really, that would be my wish. But obviously that's but yeah, I think about what half his determination, then it would be amazing just to get delirious, and just mean even watching it where I ended up in the hospital with him when he broke his hip last year. And he was only wanted up the bed and I couldn't get up to stop cannula in and everything. And he broken broken hip the lot  got himself up that bed no matter how much pain it took to he was really wanted to be

Cheryl  11:37  
That is  determination! 

Lisbeth  11:42  
That is, that is just him that's just what he's like.

Lewis  11:53  
Did the nurses come back in and move him down the bed.

Lisbeth  12:01  
They will no they come in and you know, did over everything. And then of course he was he was kept in overnight. And he went through the operation in the morning  and then they pinned his hip. But that just absolute determination that it doesn't matter how sore it is I will do I want to do that. Just like Oh, my goodness. I dread to think how much pain that must have been but no, 

Cheryl  12:34  
A broken hip and doing that.

Lisbeth  12:37  
 But that was him. So we get there.

Cheryl  12:43  
And you have carers going in?

Lisbeth  12:44  
We do.

Cheryl  12:45  
To keep him at home?

Lisbeth  12:46  
We have we have a team they are. Okay, I'm hesitating here. They do they do the job most of the time. as to what they are supposed to, I am very aware of the care plan that they don't follow most of the time. And I have tried to get them to follow it.

Cheryl  13:09  
And who made up the care plan?

Lisbeth  13:10  
 It's between his social worker and them.  We did have we did have a meeting to those and there was his original sorry, is original care plan actually was done and maybe even more suitable for the company. So that was done by them and set in place. And I have to say, Megan, that done, it was just amazing. She thought of everything, absolutely thought of everything to make sure that she'd got him home and got everything right. And, you know, to that letter, you know, just amazing. Unfortunately, care teams are not really that fond of care plans, I think. And as an ex care person myself, I had to sign everything and know what these care plans are about. And it's for that person that you're looking after. It's a wee bit disappointing that they don't just pick that up as as well as they should, you know, that would be my thing. And again, I've had another kinda, ongoing battle, shall we say that I've emailed again about a couple of things that was going on. I was not happy about timekeeping was one of the worst things. They were coming in and skipping out maybe 10, 15, 20 up to 20 minutes early. And if that's a three-quarters hours visit, like you know, that's a long time out of his care. And the fact that we've now got to the point where my dad was actually paying quite a chunk of money for this. So it's not just these allocated hours, he was an extra added hour because he thought he needed it. And that's fine, happy for that and he's happy to pay for it but I'm afraid I'm not really happy when they're not following the visits.

Lewis  14:58  
How frequent are the visits meant to be? are they daily,

Lisbeth  15:01  
yeah, that's four times a day.

Lewis  15:02  
Ah right

Lisbeth  15:03  
 So they got two, he's got two three-quarter hours slots and two half hour slots. And that would be when usually, the nighttime slot was the 20 minutes cut off his time. And I know that what was happening was they were going in, and they were using the sani-chair to get him on to that  his chair in the sitting room, taking him through getting him changed ready for bed and into bed, and away, rather than letting them have that last walk, which is when you got Parkinson's, I can't stress enough how important to us to keep you up to keep that mobility and keep that going. And even if it takes on 15 minutes, it's so important

Lewis  15:45  
to stop to getting worse, or is that just to help them

Lisbeth  15:47  
It's do help his muscles, because he's then going into bed, and he's in bed from nine o'clock at night, till at least seven o'clock in the morning. So your muscles just seize up when and that's the thing of Parkinson's, that I think probably one of the biggest things for care teams as they actually really have an awful lot more information about how to deal with parkinsons patients, because they just overlook that parent is overlooked. And I get that they're busy, I get that they've got a time schedule and everything else. But they've got an allocated slot for my dad. And they're not using it. Yeah. And that's the frustrating. So for me, I have consistently been a pain in the neck, because

Lewis  16:29  
you would think they would shorten the allocated visit, or they should be there for the full.

Lisbeth  16:33  
Part part of his care plan is that he has exercise in each visit. And then that means obviously in the morning, when he's up in his dressed, he'll walk through and go to his chair to do whatever, which is fine and then is after his morning and his afternoon slot is half an hour, not only for medication, because he's on Level C medication. But that's also to help with his mobility. So the upped it, the he originally come home on a one to one, and he's no been deemed that he needed two to one. So that's fine. But they don't walk two to one with him one does medication, and one is with my dad. So there's there's no point they're not doing they're not following what you're supposed to have and albeit that my dad actually is a lot better and with just probably in the process of going back to one to one. And then that we've been told that they don't have a space for them, they're going to have to stay a two to one for the time being, because they can't go back to because apparently it's a different team. So there is not a space in the other team for them to go back to one to one. So I don't know exactly how that part works. Yeah, that's what we've been told. Which is fine, as long as you're doing something about it, and then moving on with it. But I think that kind of came about because again, I was pushing for an assessment to be done. Because I felt that we had gone past that really two to one stage, and he was able to get up and manage. They weren't doing it anyway. So let's go back to one to one. So we've done that. And that was that was fine. So that was kind of the outcome. So we are in the process of that. But unfortunately, because there's been another big shake up with social work, he's lost his social worker again, which is the second time since they come home. 

Cheryl  18:30  
 When did he come home?

Lisbeth  18:32  
November

Cheryl  18:32  
So the second time they've changed social worker since November.

Lisbeth  18:35  
Yeah. So that's the second time. And I think it's, it's just how it works. It's just and that's fine. Thankfully, we have a good relationship with with both social workers we've a good relationship with both of them. And they are fighting to do as much as they can. And although Claire is no longer officially sort of social worker, she's doing as much as you can in the background to get things smoothed out and like the ball rolling, if you like, which is really helpful. And I think that's really important for I think that's probably a key thing for anybody that's doing the same as what I'm doing, as having that relationship and not being frightened to speak to a social worker phone them, speak to them, ask them for help. Asking whoever it is, if you've got somebody coming in, take that help that scene. Don't be shy at taking that help and thinking we can manage because before you know where you are you will hit burn out. Yeah, absolutely hit burn out just ask and take that help. It's there for a reason. You know, and absolutely, just, and there's so many people willing to do that help and so many people like yourselves that came out and showed me what to do with the, you know, the stuff that we needed and the equipment that we needed. And that was an eye opener as well because that was one of the reasons that one of my complaints unfortunately, but usually at work if you can work it on a one to one basis with my dad, it's A simple little bit of equipment but one of the best pieces of equipment and the care team don't seem to utilise it. They don't seem to like use it enough. So again,  is it just bad habits, lack of training, I don't know, I don't work for the company. So I don't know. And it's a shame because I think that the guys that are in the team actually have the potential of being pretty good at what they do. I just think

Cheryl  20:26  
And you mum and dad get on with them? 

Lisbeth  20:28  
they're getting on fine now. They're getting on better now, because we had a few teething problems. But I think the teething problems, were always gonna come because my mom didn't really want to have carers coming in anyway. So that was just getting over that hurdle, the anyway. So she kinda got in it and unfortunately, we had three teams as well. So in since November we had a team that came in, then we had to have another team that came in and, because they had to juggled that again, and it was twoto one, so yet another team, so that's a lot for them to go through as well, you know, it's a lot and it's a lot opening your door to different people. It's a big thing, and especially when you're so independent and want to do things. It's a big ask for them. So it's been difficult for them.

Cheryl  21:12  
 is your mum more accepting of help coming in now?, 

Lisbeth  21:15  
yes. She's got into that routine now, she has definitely got into that routine.

Cheryl  21:20  
 And are they just there for your dad or for mum as well.   Just for your dad.  

Lisbeth  21:24  
even if I tried to get something in for mum, I think my mum would block it. She just she's at that very much of very independent, I don't need that. She does but she won't, she just wouldn't accept it.

Cheryl  21:38  
Was there a defining moment that made you need to get carers in or was a condition to get home from hospital?

Lisbeth  21:44  
It was that was it? Yeah, I think if we go back a couple of years, when my dad was in hospital, the first time we had to approach that then. So that was a couple of years ago, a year passed in November, he got home. And that was one of the they stipulated that this would have to happen. And although the agreed to it my mum thought initially, it would just be just somebody coming in to help him getting dressed and getting up in the morning. And unfortunately, by then the medication was still that was becoming quite a big issue. Because my mum was doing my dads medication.

Cheryl  21:44  
While in the early stages of Alzheimer's,

Lisbeth  21:45  
yeah,

Cheryl  21:45  
 yeah. 

Lisbeth  21:45  
Yeah, that says it all because I would order I had I was I was overseeing everything. And I would order everything and I would go over what was needed. And even if we tried to put it into, like the dosset boxes, that was fine. But it just wasn't working. It was difficult. My mom was called by colours, not by what was on the box, what was supposed to yeah but he gets two the yellow and blue and orange. the don't always come like that. So it's like, okay, so then I managed to get it. And we were we'd go on to doing a blister pack. So we were doing that. But even at that, by the end of that time, when it changed over to Level C. my mum was missing days.,

Cheryl  23:21  
and when we were there doing our manual handling training, there was an announcement came over care call, that was a reminder to take medication. So that was something that was put in while therr was blister packs? Yeah

Lisbeth  23:34  
Again, when that was one of the things we managed to get sorted, actually, while my dad was in hospital for my mum, in case she fell when she was on her own. So we had the care call system put in. And that has been beneficial because it does give you that wee warning. And you can do that that's part of it. You can have that as a reminder for medication, which is brilliant. And it did work for a wee while. But my mom was just getting to that point where obviously she was missing times and was difficult. And if she got distracted that and I noticed one of the things again, it goes along with kinda her Alzheimer's and who we were seeing a memory loss was if she's distracted with something, that's it's gone. So if the care call came on to say give your, this time to your medication four o'clock, say if there was a distraction of going out the door that would be gone. So she wouldn't go back and do it. She wouldn't have that ability anymore to come back and do that. So that's how I was starting to notice that it was definitely you know, things were changing and that we needed to get it monitored.

Cheryl  24:41  
How long was your process of getting the assessment done?

Lisbeth  24:42  
It took a while and took quite a couldn't put a time limit on it but it took a lot longer than I would have really liked shall we say? And it took me three times actually with the doctor To get it done, but I pursued it because, again, if you don't pursue it and you don't keep going with it, you don't get the results. And you can see the results, you can see that it's there but the GP came out, and felt that they were managing and felt that they were on that day, they had a good day. So what can you do? You can't do anything about it. So he wasn't prepared to do anything. And then eventually he came out on the third visit and said, Right, okay, we, we need to help them sent to Memory Clinic. And I think that for me was just frustrating, because I thought you don't you don't see them every day, you know, you're not seeing that they're making mistakes and that things are happening and that risk, and that they are at risk, you know, so we finally managed to get there. 

Lewis  25:44  
So did they both get an assessment at the same time?

Lisbeth  25:46  
They did? Yes. A thankfully, that was able to happen. That the came out to them, the mental health team, and they did go over everything in depth assessment.

Cheryl  25:58  
So that happened in their house?

Lisbeth  26:00  
It happened in the house, yip. 

Cheryl  26:02  
So familliar surroundings as well?

Lisbeth  26:04  
Yeah, it was good. I mean, I think probably, if my dad had been able to get in and out of a car, they possibly would have asked us but, again, it was just an option for us. It was, you know, it made it easier for everybody for us. So again, that's an option that can happen. And there's a lot more things that can actually happen, that you probably, I didn't know about until I've been in that position. And I think probably one of the things as well as that I didn't really, I'd had to cancel a couple of appointments for my dad. And it was for his skin and I had to cancel it because we could get into the car. And okay, you know, I say, Well, that is something we can do about that. But I was told that I can still book hospital transport.

Cheryl  26:47  
Right. Okay.

Lisbeth  26:48  
I thought that I didn't realise that. Well, I knew you could get hospital transport. But I was never offered to get hospital transport to get them off to hospital. 

Lewis  26:58  
How did you figure that out? 

Lisbeth  26:59  
Well, it was, it was actually done in through my son, my son had a dermatology appointment. And he actually said to them way about it and she said oh we are, I'll give you the number. So it's actually just by asking again, how can we get round that? Does that still happen? Yeah. You know, and it didn't. So we got the number, got it booked in and my dad got his skin treated.

Cheryl  27:20  
Is that the patient transport that came? 

Lisbeth  27:22  
Yeah.

Cheryl  27:22  
 And picked him up

Lisbeth  27:23  
Yeah patiernt transport so it's, there's not always that willing to tell you about it. I think it's probably what I'm meaning you know that. Again, I think the biggest thing in all of this, the key thing is just ask, ask questions. Don't be frightened to ask. I was probably years ago, I was probably not very good at doing that. And would have shied away from doing anything like that. But no now I think well, yeah, I can only ask and then find out the details. And if they can't do it. If I do, I'll find another way to get another route. And that's just basically the bottom line. It's just really been just ask the questions, and see if you can get the answers. So so that's what we've done. But aye it's it's, it's not easy. But we'll get there. We get there.

So do you have any moments or stories that you could tell us of funny times are things that have made you laugh over the years, of caring for your mum and dad?

There's nothing really keen that comes to mind as such, but I think the two of them between them. My mum just, she knows that, She's she's not as you know, not as sharp as it used to be. And her wee thing will be that she'll say. I'm nearly ninty. What do you expect? Well, exactly. That's okay. So, you know, it's okay to forget things at ninty she's that that's kinda her thing, you know, and I think just I think it's just remembering things like getting my dad to play the mouth organ when we can and try and try and forget the bad stuff. You know, now those occasions that we can and just make them laugh and do stories and things, you know, I mean, I've heard the stories, that they tell all the time, obviously. But when you've got visitors in and they are telling on different things in his quite, yeah, its quite nice. But yeah,

Cheryl  29:17  
 we got a few stories when we were in. 

Lisbeth  29:20  
They've always got so many stories, and my dad loves a joke and tells jokes and things. So it's good. It's good to get him,  just getting that part of him. And seeing that. Because it's easy to get missed. It's easy to just that bit gets washed away with all the other things. So yeah, it's nice to get a see these wee bits but scheme the wee windows of who they are. Still they're still there. Yeah. So it's nice to see that. But yeah, and his mouth organ playing his mouth organ just, that's his thing. He just loves He would love to be. I think he would love to get one last go at going in and playing at the fiddlers club or something like that was somebody and just having that wee go See, it wouldn't have fit to do it like we would love to try. Yeah, but yeah, I think he's, I think just that whole determination thing is just amazing. It's just so surreal 

so  did you learn to love the harmonica grown up?

No no, as far as as much as I could do is just to blow I'll just sook and blow dad  yeah you just sook and blow, So no I can't play the tunes and my dad was the player, unfortunately. So I was forced into highland dancing and I have to say my brother was forced to into playing well no forced that's a bit strong. But my brother used to play the pipes bagpipes, and I was at highland dancing. And so that was the thing we're kinda guided them to do. And then what went to do in teaching and stuff myself for a while, so that no, no harmonica is a can do a waltz and can  do some. I mean, I could probably do quite a lot of different dances and stuff. But I never used to think nothing of it because I did that with my dad. But he would tell me. This is a barndance or this is a, you know, a waltz or this is whatever and a foxtrot I'd say oh right  is it Okay, I just keep me going. I couldn't do it without him but I coulld do all these kind of things with him. But I think one of the one of the nice things that we've bought was on their 50th anniversary, we had a party for them out it whats the bit out at inn on the loch out  at

Cheryl  31:34  
Springhome

Lisbeth  31:35  
 Springhome. Yeah. Ehm we had a 50th party there. When I think that was, you know, when you think back to that, and how fit they were in and you know, getting up and dancing and stuff and seeing them just waltzing round the room and stuff. That was lovely. So it's lovely to think that we've got that there. And we've got video of them dancing and stuff. So it was nice. So yeah. So yeah. I don't know whether they watch or not very often now but so that's that's a nice memory. And I think that's probably one of the things that it's good to have. It's nice to have some good memories, something that you can have and look back on. Definitely  they are a  pair when they  start. Great, great character. So they are.

Lewis  32:19  
So you mentioned earlier about how important it is for your dad to get up and do exercise. Is there anything else that you've maybe learned about Parkinson's along this journey? Or maybe the dementia or Alzheimer's? Is there anything that you've learned that you didn't know before, which can be really helpful for other people? Because I think with dementia, there's, like certain colours and stuff, perception in the same colours. So

Lisbeth  32:51  
yeah, that's right I suppose and my my past work experience, I've done some dementia training and things as well. So I kind of take some of that for granted, I suppose. Maybe not so much. That I think the only thing I can think of it the the dementia that I'm starting to notice that's coming in as I can the class it more of a cloud, like, I think I can see that there's this that comes over. And he's a different person for a wee while, and in that cloud lifts, and you can see that window open for him. Parkinson's, I think it's more about getting somebody to be obviously as active as they can, as much as they can, and keep that mobility going for as long as possible. But the other thing is, because my dad's probably done as well, and I know this from speaking to everybody in the Parkinson's department, because he plays the harmonica, it uses that part of the brain that it started, you're starting to lose, because it's that part of your memory. So that's so important  and that's why we think he's gone on as long as he has and done as well as he has, because he's played the mouth organ, because he's done that every day. So it would fall on that side of it getting somebody to do something that would be keeping that memory going

Cheryl  32:51  
so using that part of the brain

Lisbeth  33:10  
 So so that you're you're using that, that memory system to play the mouth organ, because he plays he does he plays by ear, mouht organ, so he doesn't read music. So it's all done from memory. So it's that for that that wouldn't be that anybody else that has done that just due to just reading something and memorising something or whatever that may be, but it's obviously just that part of that, that that you'll remember all the time. That it's been crucial for them. Definitely.

Cheryl  34:42  
And you get support from or do you  have  a specialist Parkinson's nurse?

Lisbeth  34:47  
Yes. Yes. He's also been at the Department for years and it's only been in the last five years since I've been back that I started to go to the clinic with them and take them up on sometimes  he wasn't fit drive on days. So to do that, so the last thing for five years I've been going up and I've met a some of the team that he has. And yeah, he usually I think it is a one person, whatever, you know. So it's got a really good relationship with one. In fact he had Laura was out last week and to them. So

Cheryl  35:21  
so do they provide support and information for you as a family member. 

Lisbeth  35:25  
Yeah, yeah. they will do.  They are absolutely brilliant. After any questions, again, if you need some answers to something or you're worried about something, I can find, I can phone up and ask, you know, and if there's anything at all, that we needed to change his medication, or if you're seeing any changes with maybe beds, because a lot of the Parkinson's medication, you, unfortunately can have some side effects, and hallucinations and things. So that's not particularly nice for him. But he's managed them and he knows no now to kinda, they're just not real. And they can bring himself so he understands himself what it's about. But yeah, if I was worried or anything like that, then I could phone and say, Look, I'm seeing a difference, or, you know, can we change this or whatever, in order it needs to be done. And it's really one of the other things I can probably say is, it's really, really important to have his medicine have the medication at the time hes supposed to, because the timing is crucial. Because I noticed, while we were having a few problems on issues and teething problems with the caerers, they weren't getting the timing, right. And that is just apart from skipping out the door 20 minutes early. The timing for that Parkinson's is really, really its like night and day, if he has not had that medication within a half hour window of that is okay, any longer than that. And you can see the shakes and the things stand the jerks things that come on. So that's really, really important to try and get that and which thankfully, we have managed to not quite as good as it could be. But it's a lot more better thankfully.

Lewis  37:25  
So you said you moved to about just about five years ago to come and come look after you mom and dad. Did you change job?

Lisbeth  37:34  
Yes, I did change department know what I changed my job I changed just to be and just the way it came about, they I was looking to get transferred through. And that just wasn't looking like a  guarantee that I was going to get where i wanted to be and things and I wasn't sure what was going to work. And so I stayed in the same field that was actually working with people with disability. So I've been a carer for years. So I changed from Team Houseing to Leornard Cheshire and I started working from them. And then I got a chance of working with ADS in 2020.

Lewis  38:12  
How do you How have you found the work life balance with looking after your your parents and working at the same time,

Lisbeth  38:18  
 I have to say, if I hadn't been doing the job and doing now, it would have been a nightmare, because getting a phone call, at 10 past nine in the morning from my mum and when you're somewhere else, and you're in a unit working, that would have been an issue. Whereas because I work from home, primarily. I can take that call, it's maybe a two minute call. So I can take that call. And the people I work for are absolutely amazing. They know that I'm going through all this and just couldn't do enough to support me, if I need to take an hour off. If I need to take my dad to hospital, whatever I need to do is it's not an issue. 

Cheryl  39:01  
Thats good you've got support.

Lisbeth  39:03  
 Absolutely. Brilliant. I can't thank them enough for just being there and you know, I know, in the past, you've maybe had to, you know, you've ever had to ask your boss, or I need I need this time off and you know that there's going to be an issue with it. And it's like, the last time I said to my boss she just basically say, don't, you don't need to ask its fine, it's just do you need to do and let us know what's happening. You know, as long as you know, you're okay. And where you are and  what you're doing. You know, better. My my diary is my diary and I work it and as long as it's kept up to date and they know where i am, well, then that's it.

Lewis  39:39  
 that's a really good,

Lisbeth  39:41  
 massive, massive change, massive change. So, but yeah, I would imagine for some other people, if you're working elsewhere, it would be quite problematic in lots of different times of day do different things that you need to do and sometimes having to drop everything and go because if they've had a fall What you need to do, you know, and Care call, we have it in place, sometimes you get I haven't had Touchwood haven't had one for a wee while, but you know, you can get an article in the morning, four o'clock in the morning because they can't get in touch with them. But my mum has is hard of hearing. So she takes hearing aids out at night. So she just wouldn't  hear the phone, My dad's not much better, but he will be able to answer the phone beside them. And at times, just these Oh, I didn't get, I didn't get to the phone in time. Yeah, well where were you because you know, supposed to be up. So you know that when something's happened, at that time, he's up and he's wandering, and he's doing something. So you just know, even though it tells he is not you know. No No I was in bed? Yeah, of course you were, the phones right beside you. Yeah. So, yeah, so i supposed to, you've just got to they are the wee stories that come out that you find out, you know, maybe he'll learn.  They grass and each other. That's really the really a lineage of things, because he'll say shhh shh and try and shoosh my mum when she's going to tell something. She's good. And then the biggest the first chance he gets he does it back. She'll just get up and go. Oh, I don't know what you're talking about. 

Cheryl  41:27  
I'm nearly ninty. 

Lisbeth  41:28  
And I don't remember everything. So yeah, she can be. She can be quite funny at times. But yeah, they take the bait and they grass on each other all the time which i find quite hillarious at times.

Cheryl  41:48  
And is there any top tips that you would give to other carers that were maybe just starting their journey of what's helped you to cope with being a carer for your parents?

Lisbeth  41:59  
Yeah, I think I've seen the thing, this theme of the whole day has been asked the question, ask people, ask people for help ask the questions. Find out who the social worker is, if you know, make sure that you've got a name, make sure you've got a contact, please. Because that can take a lot of the stress away. Because instead of you know what it's like if you pick up the phone and your single access point, and you don't know who you're speaking too, and you're going over that same thing over and over again. So at least if you know who it is that you're dealing with. And even if it changes, it doesn't matter, you still want somebody that's a go to person to go to. I did write  a couple things down, but I'm not sure. Probably one of the other things would be if anybody struggling, like I have been with the timekeeping. Most, I think most care companies, now are all doing everything online. So they'll have phones, and they're doing their their updates on the phone and things like that. But there's actually, you can get the link to go into check that now then you can ask for that. I didn't know that. So the care provider, if you ask for it, have can give you that you also, they don't necessarily keep the care plan, they have a book in the house, but they don't necessarily keep everything, either. But you can see that you can you have you have access to that. It's your family's care plan. So you should be able to see that and should be able to see what they're doing. And you should also be able to see how that daily write up has gone. How they've been what it's been like, you know, so if you're worried about something, or did they do something on that particular day, then you can you should be able to see it go in and check on it and check on our communication. Yeah, so yeah, so this should be we now have a communication book through we can pick that and what you can access their documents online to see the timekeeping to see what they're doing and see where the daily log has been. Because the tend to try and keep that out your sight. Really, they don't like to see that.

Lewis  44:06  
how did you come across that were you told by someone? Just ask.

Lisbeth  44:11  
 I didn't ask, but I have this was just through probably persistence of timekeeping, and asking them that, you know, why are they coming away at that time? You know, and they're telling me that, well, my dad was refusing to walk that day and he maybe didn't, you know, need that time. So right, that's fine, but why were they not in and why are they still leaving? You know, because we are paying. We are paying quite a chunk of money every month, and you're not providing that service. So what what what is it and that's you know, so that's probably one of the one of the things that you can find out, I don't know if there is anything else I found out but i did write a few things down. Yeah, a diary. I think if you've got diary in your parents,  I've got diary in my mum and dad's house. And that I've had that since basically, for the last five years. Basically, I think it helps to keep a track on appointments, when you've been when you've had them somewhere, that they seem to need more and more appointments kept up to date and things, so

Lewis  45:17  
Is this his appointments for them for appointments for them?

Lisbeth  45:19  
GP appointments, any appointments that they've got, nurses, you know, vitamin B12 jags anything like that at all, I think that really helps. Because you can then also keep a record on it. Not everybody works with a diary, then not everybody thinks about it. But if you've got a daily in place somewhere in the house, and you've you've maybe had so many, you know, maybe five or six appointments since January, keeping a track on that, who it was, who went what time it was who they seen, you don't remember them all, you know, and another couple of months time that will have gone. We are all busy we all have busy lives and doing things. So yeah,

Lewis  45:24  
 is that something that you'd fill out for them,

Lisbeth  45:58  
mum used to be able to do, and she would get so appointments come in, she would open the letter put it in the book the week that that was happening, and write it in the book and write it in the diary, but we've now progressed to that point where she just can't really manage to do that. She panics when someone comes in. So as soon as someone comes in, I have managed to get her into a bit where she will actually, as soon as a letter comes in, she'll open it and she'll phone me and tell me what is what it is and because she knows if she doesn't tell me then she forgets later. So we've got at least got that and it's just kinda. She's gone. You should agree to do that. And she's quite happy with that. Because I think what happens then is of I've told you that's it. So it's gone. She doesn't even need to think about. So once she's done it. She's told you that's it. It's your responsibility. But that's okay, I can live with that because that helps at least that's it. So I've tried to get at it as well, usually talking to her and say to her pop it in the diary. And I've seeit first time I'm in and same with any bills, so any invoices and things come in. I'll get them to put them into the diary so that you can then have a place to go to and check them. And then you can write it when it's been paid. If you're checking payments and things, or if you're there when they're doing it, you can then go back and say no, well no we paid that six weeks ago that's been paid, because then you've got a paper trail because it helps. And that's a massive help. Because I didn't know about a bill that had come in from a solicitor and it was about a year and a half. But there was a bill left lying for about a year nearly enough. And we didn't know about it until I did actually gone through paperwork and sent another thing out. And my mum said, oh, there's a letter there. Yeah, that's about £80 and that would have been nice if it was just £80 but it was bit more than that. So yeah, so things like that just get lost, you just get lost with things. Like I said before, she may think that she's gonna deal with that. And then the phone goes, door goes. And that distraction, and it's gone, and it's lost. So that's where it's just on that moment. If you can get them to just get into that pattern of getting and using the diary, then it just makes life easier for you. It makes it does help a weaver. Yeah. Don't think that anything else? Nope, i don't thinks so.

Lewis  46:02  
No, I think I think everything that you've covered today has been amazing, really insightful. And really, really helpful. Like you said, definitely. Because a lot of people out there that will benefit from this. I hope so yeah.

Lisbeth  48:40  
It's just, it's just a minefield for you. You're taking off with it. And I know that I'm living, I still find that a minefield. And I've worked in care, you know, so I think we'll you know, like how bad is it for other people. But then you know that as a just there's so many people out there to help you and the carers centre as well now there's  the carers centre is a go to for some people too you know, that it's, I get called, I don't necessarily to go to, what are the things that are on, you know, in the afternoons that they've got, but I still have a phone call. Yeah. So somebody checks in with me, you know, just every so many months just to see how I'm doing and how things are what you offload and that you know, and then maybe we can thrash something out when there is something that they can point me in the direction of going then, you know, that can that can help as well. So yeah, I mean, I'm usually on the other end of the phone signposting people off so do well. And actually one of the things I suppose that was quite a lightbulb moment I dare say was the one that one of the girls I was speaking to at the carers centre, but she said but yeah, your now on the other side of it, you know, and it did you know, you've got to sort of think all that from the you know, it's not just you thats signposting off to everybody else and you actually are the person being signposted. You know I am the carer you know the unpaid carer thats picking up the pieces so its like  well yeah I suppose I don't really think of it that I just take it in my stride as most people do you know you just don't think about it but as I say most of the stuffs kinda down to myself and my son, my daughter does help out not again but just when she can manage but my brother's not able to come into the equation his health and his mobility is probably worse than my dad's. So he's he's not great at all. And anyway, he would have even if it was fit and healthy and able to do it his words would be you just do it you always work these things out. So you just do it so that would be that would be his answer to everything anyway even if he was fit and able to do it so it just it's that's just not his thing. No, you just go in bed. Right then okay. But  you know we get there.