Carers Voices

MND Diagnosis: Becoming an Unpaid Carer Overnight

• Care Training & Consultancy CIC • Season 1 • Episode 4

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In this powerful episode of Carers Voices, we bring you the extraordinary and deeply moving story of Tricia, a resilient woman whose life took an unexpected turn when both of her parents were diagnosed with life-changing illnesses simultaneously. Tricia's unwavering dedication and love shone brightly as she selflessly embraced the role of an unpaid carer for her father, who battled Motor Neuron Disease (MND), and her mother, who was diagnosed with heart failure.

 

Join us as we dive into Tricia's remarkable journey, navigating the challenges of being a caregiver to both parents in the face of daunting circumstances. From the moment of their simultaneous diagnoses, Tricia's life became a whirlwind of emotions, responsibilities, and sacrifices.

 

In this conversation, Tricia opens up about the complexities of managing the care for two loved ones with different medical needs, while simultaneously tending to her own well-being. She shares the heartache and struggles of witnessing her parents' health decline, while gathering incredible strength to provide them with unwavering support and love.

 

Throughout the episode, we explore the resilience and fortitude Tricia displayed as she confronted the emotional rollercoaster of being an unpaid carer. Her heartwarming stories and candid reflections paint a vivid picture of the joys and challenges that came with the role of an unpaid carer.

 

As we listen to Tricia's inspiring journey, we gain valuable insights into the often-unseen world of unpaid caregivers, who balance their own lives with the responsibility of caring for their loved ones. Her story is a tribute to the power of love, determination, and the unbreakable bonds within families.

 

Join us for this heartfelt and touching episode of Carers Voices, as we honour Tricia's courage and unwavering 

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Lewis  0:01  
Hi, everyone. Welcome to this episode of carers voices. I'm joined with my co host, Cheryl Murray and our guest Tricia, thank you for joining us today. Tricia, would you mind introducing yourself and who it was that you care for or cared for?

Tricia  0:16  
Hello, everyone. Well, thank you for inviting me here today. I have only been a carer for about nine months, during which time I cared for my dad and continue to care for my mom.

Lewis  0:31  
Can you tell us a little bit about a little bit more about your your mom and dad and the conditions that they have had?

Tricia  0:37  
Okay, thank you. Well, 18 months ago, my parents were independent, living quite independently in their own home, a bungalow that they retire to. And they were ticking along quite nicely. Fast forward, to nine months ago. And a number of things has happened. But basically, Dad had been admitted to hospital with several issues. And it was during that stay in hospital, that he was diagnosed with motor neuron disease. He was 86. It's a little bit unusual to get a diagnosis at 86. But he did. And that was something we all have to cope with and come to terms with. I really only became a carer at that point. And I'd never really thought of didn't know anything about it. So that was in hospital, he had a diagnosis. And we had to then plan how we were going to care for him. When he was discharged. He was he said he would like to go spend the rest of his time at home with mom. And we had a very supportive team put around us that enabled that to happen. While Dad was getting that team put together while he was still in hospital. My mum was admitted to hospital. And she was diagnosed with heart failure. So it she was there for no longer going to be in a position to look after dad when he was discharged from hospital. So I suddenly found myself with both parents about to be discharged from hospital and both needing care at home. Now, I hadn't lived at home with my parents for more than 40 years. I have a home and a family and a husband. More than two hours drive away. My parents are in Dumfries and my brother is in a similar situation in terms of distance he'll is outside Edinburgh. So we had to work out what we were going to do to look after my parents.

Lewis  3:22  
What was the what was the planning process? Like when you started caring for your parents then so when? Once you your mother went into hospital? What what did that plan look like for you deciding how often you're going to go up and see them? Did you go and stay with them for a short period of time? Did you go up weekly? Did it go up daily? How did that work for you?

Tricia  3:46  
Well, I was staying with my mum while dad was in hospital for some of the time I was staying with mum. And the discussions around dad coming home involved hospital bed coming to the house various adaptations being made. And it became clear that somebody was going to have to be at home all the time to care for both of them. My brother and I decided that the best route to start off with would be that if some one of us was there for a week, and then we would have a week off while, the other person looked after both parents. So dad was discharged home and I was there the day after he was discharged home. He was actually discharged home when my my older daughter was there. She had been looking after the house while both of them were in hospital. And dad suddenly you know got word that he could come home so she was there and he came home to a hospital bed and carers. At that point it was three times a day. And I then went up to Dumfries the next day to stay at the home. with my daughter, and my mom was discharged. So we went collected her from hospital. And the full reality of the situation hit to be that weak dad with motor neuron disease was had losing the ability to walk. So he needed help to get him out of bed to get dressed and washed and the carers did that. But thereafter he was in a wheelchair, and needed help to do a lot of things. Mom with heart failure was very, very frail at that point, and she couldn't do anything. So I suddenly found myself at home, managing a home that I'd never really lived in, I was managing this home, and then covering the basic needs food, clean clothes, doing the shopping, the washing, just general housekeeping. So I had to get that started. First of all, there was then sorting out medication. Now I didn't have a clue about the whole process of medication, what was needed, how to go about getting it, making sure my parents took it. For example, dad came with a catheter, and I didn't know that night bags had to be changed on a daily basis. But day bags could last up to a week, and you had to order both on prescription and have supplies in the house for the daily night bag to be changed. I didn't know where continence pads came from. Anything like that. Some things are available on prescription other things appeared with district nurses. And I was completely overwhelmed by just keeping on top of it all, plus making sure that mum took her seven and a half pills in the morning and, and then the next pills at the next session. So just keeping on top of all of that was, was quite a challenge. A tip to anybody who finds themselves thrown in like this at the deep end, because I had no knowledge of the care system, I didn't really know what I was doing would be that everybody who comes to the house, ask questions and write down the answers, write down who they are. Make sure you've got a contact number for them, and find out what they can do to help you. Now the carers were wonderful. And they're doing it all day, every day. So they can provide answers to lots of things and give you a job when you're running out of certain types of night bags or D bags or whatever. So the carers were absolutely fabulous helping. But there was a stream of professionals in the first few weeks that came to predominantly dad. And it was just working out who everybody was, what they could do, and how, how they could help. And that was huge. That was huge. So the tip really would be to not be afraid to ask questions, because I certainly knew nothing. Whereas for these people, that is their job, and they do know, if they don't know the answer, they can signpost you to who might be able to help. And it's just quite overwhelming at first, being with all of that,

Cheryl  8:34  
as well as to have taken the diagnosis that your parents have just been given.

Tricia  8:38  
Absolutely, you're dealing with a diagnosis that I knew a little bit about motor neuron disease. But clearly, I wanted to find out more and what was going to happen with dad how it was going to progress. It's a disease where the motor nerves that carry messages from the brain to the muscles. They deteriorate over time. The particular nerve patterns vary from person to person. In dad's case, his legs were affected. And also his speech. He was sounding slurred and there was also other finer signs I hadn't really noticed such as his arms were weaker, he couldn't do fiddly things with his fingers. Obviously, there's other neurological signs, but it's these nerve pathways that are deteriorating over time. But what is the case with most people is the brain continues to function normally. So there isn't a deterioration in cognitive ability he could. He could think clearly, he could do it. He could think clearly He could have a conversation, those skills were still there. And there's no impairment in sensory function. So he could still feel everything in his legs. He could hear he could see, it was. It's a muscular thing. And I think that the cognitive function was important for me because I realized, although he was deteriorating physically, and quite rapidly, his mental capacity was still there. And that that was quite difficult. I was very pleased it was like that, because it meant we could carry on engaging and having conversations. But it is it is quite a challenge as well, because he was fully aware of what was happening. He'd read the literature too, and he knew what was happening. So yeah, she dealing with all that the practical day to day things, which in themselves are quite overwhelming, plus a terminal diagnosis and dealing with the emotional needs of both dad with the condition. And and mum who had her own health needs that were really quite severe. Plus, she was dealing with the the knowledge that her partner 62 years was deteriorating as he was. So yeah, there's a lot suddenly to deal with. And in all honesty, after a week of looking after both my parents when they came out of hospital, I was absolutely exhausted, both physically, emotionally and mentally. And my daughter was with me for a lot of that time, and she was that boosted energy. Because I was just shattered doing it for the two of them. I went home back home to Cumbria, and rested. And things had got worse. My brother and his wife came to look after my parents and things got worse than that. Not that they came, they got worse because dad then caught COVID. So on top of everything else, they were then dealing with the the COVID situation, which was still bad. Eight, nine months ago. So yes, after a week, they were there absolutely exhausted as well. Once they'd all tested negative, I was allowed to come back and relieve them. So those first few weeks stand out in my mind as being absolutely exhausting in so many ways. However, the people that came to the house were fantastic. And everybody had something to offer. And I wrote down, you know what they did? How they could help. And even if at that point, I wasn't in a place to access that help. I knew at some point, they might I might be able to do that. And it was probably around about that time I met you, Cheryl, wasn't it? Because Cheryl came with Kelly, and taught myself and my daughter how to move dad using the steady. Yes, yes. And that was a great thing. Because that meant that we could move dad from a wheelchair into what we called the comfy chair. And, or we could move him into the wheelchair and take him outside. Because we'd had fast track around fitted so we could then get him outside and he liked to get outside. And that just gave more independence. And again, I knew that dad was able to make those choices and could say to him, Where do you want to go? Where do you want to sit? Where shall we go? And by you come in giving us that training. You gave us the confidence to move him around. And we could do that. And that that was that was again a really helpful thing. So that it made a difference. We had it really did. I appreciated that

Cheryl  14:08  
the day that we came your dad had just got his chair was it that day or the day before? 

Tricia  14:13  
Oh, the chair. 

Cheryl  14:14  
So it was it was a great delight to be able to get into the chair

Tricia  14:17  
The comfy chair? Yes. I really have to thank Claire who's the specialist nurse for MND. And we met Claire in hospital and then she came to the house and she was there both as a support for dad. But she did a huge amount behind the scenes getting things organized. And dad was allowed to have on loan a comfy chair from MND, Scotland and it was delivered through Disability Scotland, is it disability or mobility Scotland, mobility Scotland and This is another standout person, Billy, from I'll get it right. Mobility Scotland, Billy from mobility Scotland. That's right, he delivered the the comfy chair, which was an all singing all dancing remote control chair, that dad could put his legs up lay back go forward. But it had features such that it kept dad comfortable and would reduce the risk of pressure sores, because we didn't want dad to get pressure sores due to his mobility. So Billy came from ability Scotland and persuaded dad that it really was beneficial to have a mauve chair in dad's living room, which he would never have chosen. But there's mauve chair, which we just called the comfy chair became a great thing for dad because he would sit there and he would lift his legs up and down. And I have a lovely photograph of him reading his newspaper with his legs up so comfortable. But that was really important. Because throughout the time, dad had this such limited mobility. We did everything we could to avoid pressure sores or anything like that, that would give him discomfort and pain. So yes, that was a shout out for Billy who was amazing. And so positive about things and wheeled in this mauve chair. So yes, you helped us then move dad from the comfy chair into the wheelchair. And we were able to go outside and dad enjoyed getting outside and keeping an eye on the garden. And simple things like that.

Cheryl  16:44  
You spoke earlier about your dad went into hospital because you had noticed certain deterioration in his health, as at any pinpoints or anything that anybody else could look out for, that you were noticing that caused them to end up in hospital. Was it lots of little things? Or was it more of one bigger thing that triggered the hospital visit,

Tricia  17:09  
he had been falling over quite a lot. And I hadn't been aware just how much he had been falling over. It kept that a bit from myself and possibly my brother as well. But he was finding mobility hard and he was falling over. The actual events that led to him going to hospital was he lost control of his bladder. And clearly, there was an acute issue there that had to be dealt with. And when he was taken into hospital, an observant Elderly Care Consultant noticed there were other features that weren't just relating to the lower body functions not being as they should. He had been told his spine was crumbling. And really we thought that that's why he was losing his mobility. But his speech was slurred and he couldn't do fiddly things. And he certainly didn't have strength in his upper body. He was also showing signs of muscle wastage. He was just getting a bit thinner. And looking back, those things were all little indicators that he was suffering from motor neuron disease. When he was in hospital, there were a number of discussions about where to go from hospital. He was offered a feeding tube which would have meant surgery into his stomach and a tube into his stomach so that at the time when eating became difficult, he could be fed directly. He said at 86 He was just going to go with whatever happened and he wasn't going to have interventions. younger patients with MND, sometimes you see them with tubes, helping them to breathe, actually with like ventilators helping to put the air in and out of their lungs. It our dad didn't want interventions. He was happy just to go with what was happening. Again, yes, that one of the other options that he could have done is voice banking where you record elements of people speaking, you record a new store, they're speaking so that when the time comes that they can't speak, that can be used in very high tech communication needs. That can be accessed by a number of means but even by eye gaze, you can look at icons and that can speak sentences back at you. All these things are available. And you see people with them. Dad, having never really mastered or ever wanted to master a mobile phone should absolutely no interest in anything high tech. And, you know, his approach was just to go with the flow. He did engage with a speech language therapist making up a communication book. That was a bit all like all about me. And I think he used that when When Kelly sat in and had a morning with him, somebody who didn't know him, he was able to use that to engage in conversation and support his conversation by having key words, phrases, places, things that he'd done within this book. Laterally with communication, he wasn't able to speak. And we went through a number of things, he was able to write things down until his hand function was such that was difficult. And towards the end, the things we used, we used just an alphabet chart. And it had the QWERTY keyboard on one side and ABC on the other. And for dad, he wasn't familiar with Qwerty. So ABC was the route we used. And he would point to the letters, I was never very good at remembering the letters and what they spelled out. So I would have to write them down. And he would point to letters, and I would write them down and we get a little phrase or a key word. And it enabled him to keep that communication going, which I felt was really important. Because mentally he was there. Right to the very end. He was he was there with us. And when you lose communication, it's really difficult. So I was very pleased that that was a means we were able to keep keep communicating.

Lewis  22:08  
Tricia, could you tell us a little bit about the conversations you had before your father's speech started to deteriorate a little bit?

Tricia  22:16  
Yes, yes, Lewis. We had lots of conversations. And you know, I'm really privileged looking back that I had that time living with dad. And he got to know me as a mature adult. And I saw him through the eyes of being a grown up. Because really, I'd left home at 18 gone off to university, started or worked elsewhere had a life we'd always been in touch. I mean, I've visited dad, regularly, I took the children to see him, he came to visit us. But we've never spent as much time together. And I think it was spending that time together was a real privilege. And we really, we really got to know each other. And leading on from that it was Claire, the MND nurse, who started some quite difficult conversations at times. And I think the first time she did, I was almost taken aback. She was asking dad about where would you like to be when he became very ill. And I suppose I hadn't really taken on board where we were going with dad. But I picked up on that. And as his speech became a bit more slurred, I was aware that there would come a time when I wouldn't be able to hear from him what his views were, or what his wishes were. And I picked up on some of those conversations, and I had you choose the time, but I had difficult conversations with Dad, Mom was usually there about things such as, you know, what would we do when he became very ill? What did he want? What would you like us to do? And although it was really, really difficult, at the time to be talking about something that was gonna be difficult in the future. I'm really pleased we did that. Because when the time came that he couldn't speak and it came as a shock to me suddenly that I just couldn't understand the sounds that were coming out and he realized I couldn't understand him. But I knew what his wishes were. And I could ask him things and he could tell me with a thumbs up or a thumbs down what he wanted. And it gave me the confidence that towards the end we were doing what he wanted, not what we thought was best for him. But what he wanted? And you know, it's really hard at the time to have those conversations. But it gives you I can now, you know, rest with a clear conscience that the things that we did when we had to make decisions. I know. I knew what his wishes were at those times. And I think you shouldn't shy away from if you're, if you're with somebody who's cognitively able, and I think that will obviously make a difference. You shouldn't shy away from those difficult conversations if you can, because it certainly helped me a lot. And we did I feel we did the right things by dad.

Lewis  25:51  
So you think having those conversations, helped you act in his best interests, enabling him to get what he wanted after his speech deteriorated?

Tricia  25:59  
Absolutely, absolutely. Yeah. Very much so. Oh, yeah, you can't you can't programming today at nine o'clock. We're gonna have a discussion. No, no, no, it's as it happens, and twos? Yes. And as a carer, you know, you have to be so flexible. I didn't know what each day would bring having both of them. So vulnerable and poorly and frail. He didn't know what each day would bring them in the care would come in in the morning, and there'd be some something wrong with dad's catheter or something else. And you'd have to find the doctor or the surgery or, yeah, you have to be flexible. You couldn't say, Oh, we're going to do this, this and this today? No, that was a juggling act, an absolute juggling act. Yes. And just taking each day as it comes. The MMD motto is make time count. And you can't be a wonder person and me every day all singing, all dancing. But I kept that little slogan in my mind. And I used to think that what can we do to to have a good day? Or how can we make this a good day? And we did. We had some amazing laughs and some great fun.

Cheryl  27:23  
Can you tell us some moments that made you laugh. You've had plenty of them from, from the experiences that when I was in with your dad, he had a real great sense of humor. 

Tricia  27:33  
He did 

Cheryl  27:34  
one that sticks in my mind as the first time we got him upstanding in the stand-aid, he has said to Kelly move out the way because he was able to see out of the living room windows, because he'd been sitting in his wheel chair he was now on the stand-aid standing up tall with this 34 inch legs, and he can see out of living room windows so that that's one that always sticks with me. 

Tricia  27:54  
Yes. 

Cheryl  27:54  
And how difficult it was to get in beds and chairs, and trousers, for a 34-inch leg

Tricia  28:01  
Oh, yes. Yes, I remember all of that. Yes, going outside and being outside was really something he liked to do. You love to get out there. So, you know, once we had a ramp in place, he could go outside, and the ramp was fitted just before Christmas. And we'd managed to write some Christmas cards to the neighbors. And quite importantly, and poignantly, he wanted me to take him out with mum, and grown the neighbors and deliver the Christmas cards. And even being out there we met a few of the neighbors in the process of doing that. So you're away from that being isolated in your own little cocoon, you're out there again. And he had a lot of dignity. And he wanted to remain look smart and whatever. But he wanted to be out and the chance to get these Christmas cards delivered. So that was doing lots of little things like that were just significant. And a lot of the funniest times that are the fun times were totally impromptu you, you take he had a friend who had just turned 90, and had lost his wife a few months earlier. And this friend would come around and jolly things along tremendously. And the friend would come around, we'd be sitting there still with the breakfast dishes on the table. And they discovered that my daughter could stream music such as from the 40s and 50s. So Frank Sinatra and so on, that she could stream this on her phone. So this friend would come around and say, I was just thinking about such and such a tune. So my daughter was there, we would get that up and we'd be singing along to tiptoe through the tulips and Frank Sinatra and I remember daisy dotz and dozy dotz and little daisy Dozie didey or something. My goodness, they knew the words to that word perfectly all six verses we would sing along to that. Just impromptu it wasn't planned, it was just impromptu. But it took all three of them to a time. That was a happy time. And music was the trigger for that. We did quite a lot of that, such that my daughter still complains that, you know, suggested for you list comes up with Frank Sinatra and she is she's 23 You know, you know, she really doesn't want Daisy dotes coming off as suggested favorite. So there was impromptu times like that. There were one or two other times when I was aware that dad was maybe a bit agitated. And I would use the family photograph albums to take him back to a time and a place that brought back memories, usually happy memories, but memories of family holidays and family picnics and events like that. And the photographs were a great trigger for that. So we used things like that. And just general just general things that happened. Yes, used to refer to my daughter and eyes clucking hens when we got together surrounded by women clucking hens he used to see one quite moving thing that I managed to do with dad was the day of the the France versus Scotland Six Nations match which I know a lot of Scots will want to forget about. But I know that's the day because that's the day the match was happening. And Mum had been readmitted to hospital. She was in and out of hospital quite a lot. She was in hospital. And dad was quite anxious about mum being away and being in hospital. And a few days earlier, I had contacted a number of taxi services to find a taxi that would take a wheelchair. Now I know these vehicles are out there, but I couldn't. I couldn't find one. And I managed to get somebody called Gareth to come at the weekend, the afternoon of that rugby match to take dad to the hospital to visit mum. Now Dad had never been in a wheelchair adapted vehicle before. And I said Are you up for this? I got the thumbs up. So we went in the taxi its only a couple of miles from their house to hospital. And the look on mums face when she saw the two of us arriving to visit her it was it was a magical moment and a very happy moment because it reassured dad that mum was recovering. And Mum was so pleased that we had made what was a mammoth effort, really, but we did it and we got back and it was fine. So there was lots of just moments that were either impromptu or set up like that that happened. And often just simple things that you look back on and you think yeah, we did that we made that day count. We did something. Not all days some days were just awful in the series of you know, domestic disasters, domestic Yes, and domestic disasters. But you know, that's that's life, isn't it? And you have to take the good days and just celebrate and enjoy those good times, which is what we did.

Lewis  33:41  
So, Tricia, I was gonna ask, earlier, you mentioned about being thrown into the deep end. And your top tip was to just ask questions to get the help. So who did you ask the questions too? And then where did you go for their help? So for instance, I'm thinking about the medication and the catheter bags. Who did you ask about those? And then where did you end up going to get the help for that?

Tricia  34:09  
Yeah, yeah. Well, first of all, the carers were in four times a day with dad with carers come in to get him washed and dressed in the morning. They came at lunchtime, late afternoon, and then there was an evening visit to help dad go to bed. And the carers were fabulous. Yeah, odd hiccups, when you needed two carers and one of them was held up so there's only one carer things are never going to run smoothly on the whole, the carers. If they didn't know the answer, they could say well, you'll need to contact the doctor surgery. So they were a great help. For many other things I could text clear the MND specialist nurse. She was there as a point to have contact. And if she didn't know she would make it her business to find out, or would signpost, me to the right people. And I think the service of the specialist nurses are, it's a fantastic service because I always feel guilty if I'm bothering the GP because the GPs are busy. But the specialist, nurses know that area, and they know what your needs are, and where, how to support you in that situation. So Claire was a huge source of help and support. And then along with that, there was the palliative care team that was that was headed up by Kelly. And there were various people, part of that team, we had physios OT, we had the speech and language therapy department, and they came and supported for different needs. And I had their contacts for all of them, that if I felt have a crisis here, I just want to talk to somebody about what I should be doing shouldn't be doing, I could contact them. So different people, but I did have a book, and I wrote it down in the book, who it was and how to contact them. And as dad's illness progressed, it became clear that we were going to need more help from the palliative care team. And they were super and again, Claire, put me in touch with who to turn to. And who did what, in terms of cover for night times, evenings and nighttime, because people always become ill during the night it just to me, you know, you go through the day, and it would always be nighttime, there's a crisis. And the doctor surgery is closed? Who do you turn to? So I had the numbers of who to contact and how to contact people. And at this point, I'm going to do a shout out for the Marie Curie nursing service. Because we were referred to them or dad was referred to them. Yeah, three or four months before? Yeah, shortly after he came out of hospital, we refer to them and they would contact us on a fairly regular basis weekly to fortnightly and ask, did we need any help, they could offer overnight cover if we needed it. It was there, we just had to ask. Now it didn't ever tap into overnight help from them. But the very fact that of knowing that that service is out there was really reassuring. And I think that's true of many services, you may not actually use it, but just knowing that there's a person there who can help you is very reassuring. Now we did use Marie Curie, it was on my brother and his wife's watch. When dad was struggling to breathe. They they asked them to come in. And I think if I recall correctly, you know, they were really supportive and helped with that situation. And then I used them later on. And again, they were incredibly helpful with that. That was a that was a very positive piece of involvement. Yeah.

Cheryl  38:28  
So any other top tips that you would have for any other carers who might be starting on your journey or anything you wish you knew when you first started?

Tricia  38:44  
For me, I would say, don't sweat the small stuff. You're not perfect. Except things are gonna go wrong from time to time. Just keep flexible and keep your sense of humor. And we all had a sense of humor about some things we needed to. I felt it was very important to keep communication going with everyone involved. And certainly with my parents, so they knew what the needs were communication but not always actually giving too many choices. Because sometimes it's stressful, you know, Dad was struggling to eat towards the end. And I had a fair idea what things he would find it easier to eat. So rather than say, What would you like to eat? And we perhaps just limited to a couple of things saying do you fancy this or do you fancy that and keeping it simple, because it was quite a lot of food preparation, getting food pureed, that he could manage to eat it and swallow it. And that became a real challenge towards the end. We were thickening liquids for him for quite a long time. But the the meals and the choices just not to give too many as a carer you have to make time for yourself to talk about setting boundaries with children. But I actually had sort of boundaries with my parents and negotiated that. In the afternoon. When we'd finished lunch, in the afternoon, both my parents would settle down and have a little nap, they wanted, that was a quiet time for them. And I would go out and do something in that time, whether it was going out for a walk or going to the swimming pool, I would do something that was just to let me get my head straight. And I like to do a bit of physical exercise, it was usually something physical. And the that was quite important for me to try and fit that in around everything else. So it was making time and looking after myself. 

Cheryl  40:46  
So is there anything else that you would like to tell us about your journey of being a carer, or moments that stuck out in your mind while you were caring for your dad.

Tricia  40:55  
One moment that was quite poignant, was it was a Saturday in March, and dad's friend came round with his new car. Now this is the ninety year old. And he hadn't been able to bring the car round because he'd had a cataract done. So he had to wait until he was out to drive again. But he had a new car. And you know, boys being boys, he was desperate to show it to dad and dad was really keen to see it. So it was a Saturday and he brought it around. And I said we'd like to see the car. And at this point, dad couldn't really speak. But we knew that dad wanted to go out and look at the car. So we went, saw the car and dad was so interested in it. And his friend was explaining all the bells and whistles and what it could do. And it was it was great. And I actually rushed out with my camera and I took a picture, another photograph of dad shaking his friend's hand, you know, happy miles sort of thing. He couldn't see it. But you know, you could tell it would been a really positive afternoon. And we went back in and later on Dad was he was struggling to breathe quite a bit. And we didn't have a successful tee time. He couldn't eat anything. And he was really getting His breathing was getting more labored. So I phoned for the out of our service, and a nurse came and gave him some medication to help him just breathe and relax and he was in bed. And that that was all fine. And getting towards midnight. I was in the room next door and I could hear dad's really struggling again with his breathing and I went through. And I wasn't happy with the way he was. So I made a call to Marie Curie nurses and said that dad was struggling to breathe. He'd already had one dose of medication earlier on, but it was earlier on and I felt he was struggling. And I could just do with a bit of help from them. And I remember them saying to seem to me just stay with him, keep talking to him. We'll be around within an hour is what they said. And at that point, my mom was with me. And my 22 year old daughter was with me as well. And we were all with dad and we we kept him company, we talked to him. And he very peacefully slipped away. He stopped breathing. It was just too difficult. And this was a Saturday night, Sunday morning. It was round about half past 12 I contacted my brother and let him know what had happened. And I was suddenly sort of a contracted with this. Hadn't thought What to do now. And clearly. We were occupied comforting mum. But I just honestly didn't know what to do was ring the doorbell. And it was two nurses from the Marie Curie charity. So I said to them, well, we've just lost dad. And they gave their condolences and said, Well, we can help. And I sort of inquired, and they said, Well, should we give him a wash and give him some fresh clothes and he doesn't want his catheter anymore, does he and why don't you go make a cup of tea and sit with mum and put his fresh him up. And we'll get the paperwork started as well. And it was such a relief to have the right people at the right time just to come in and take over and they knew what to do. And they were they were so compassionate but practical And it was just ideal what happened at that time. And you know, we were able then to comfort moms spend time with her have a cup of tea, go and see Dad and and they really were just angels that knocked on the door. absolutely the right time. So I do want to give a big shout out to the Marie Curie nursing team because they were fantastic as a charity to be able to come and do that was very, very supportive at a time when I suddenly found myself completely lost and just didn't know what to do. They were agreed to help

Cheryl  45:42  
them able to attend at that right time for you to be able to support

Tricia  45:47  
that was really helpful. Yes.

Lewis  45:51  
Is there anything else that you'd like to share about your, your journey?

Tricia  45:57  
Well I'm still I'm still journeying on with my mom, it doesn't end because mom still has heart failure. But the situation is different. Now, because I am back living at home with my family. My mother has carers in four times a day, who helped her to get dressed, oversee her medication, and take care of her personal needs. She has gone from being very frail, to having quite a lot more strength and ability. And she was clearly under so much stress during the month that dad was ill, that took a heavy toll on her own health. But she is doing very well for herself. And she has decided she would like to try and live in as independently as she can in in their home. And so she's doing that and she's making a very good attempt at it. And I can't thank her neighbors enough because they tend to her plants and water the garden when it was needed and cut the grass, her neighbors are fantastic. We look out for her. And she has a little circle of friends that call in and visit and just seem to know what to do to whether it's bringing her cake or flowers, or some of the practical things like taking it to the dentist even that helped with so many things like that. That you know, it's really quite positive that mum is doing well with the carers independently. And my role is a carer has stepped back from doing so much for her now just to do the things she physically can't do, or to facilitate some of the things that she finds a bit difficult. So that's where we are. So we just go forward from there. And I come and see her maybe once probably about once a week, or my brother comes every other week. So we're trying to keep her going. Bearing in mind that emotionally she is coping with a bereavement, having lost her husband of 62 years. But she is being very positive about how she's going forward with that.

Cheryl  48:15  
We can only thank you for coming in and sharing your story, I'm sure there's lots of top tips and lots of information that you'd give us that is bound to help other people. So thank you.

Tricia  48:28  
Well thank you, Cheryl and Lewis, Thank you.