Learning to Give Yourself Grace as a Dementia Caregiver

Gina Ablett
Gina Ablett

Gina Ablett talks about the importance of connection & giving yourself grace.

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Podcast Transcript

March 16, 2023
Note: This transcript was computer generated and might contain errors. 

Katie Wilkinson: Yeah, I mean you have such an interesting. I guess maybe every caregiver has an interesting, you know, set up and and is making it work. But how did you guys decide on on between you and your husband and your parents? How did you decide on this? You know, arrangement where you were living with your grandma part of the week and home for a couple days all of it.

Gina Ablett: They were very different conversations with my husband. It was almost quite simple and I, you know, we don't have children. With no intent to have them. So we weren't putting anything on hold. I was very career focused but he's very supportive of what I do and and At the time, I was unhappy with work and I've always been really involved with the nuns, and I kept worrying about how my parents were coping. And I'd said to him, You know, if I leave work, we were in the pandemic, although I was in a career, it was in hospitality. So, you know, nightmare and and I just said to him, you know, would be no different than times where I've worked away.

Gina Ablett:  When I first started, I had only committed to Monday to Friday. So I was like, it's just like me working away at one of the other hotels, Monday to Friday and I'll be home on the weekends and but we were honest with each other and we said that, you know, realistically there's no end date to this. and, Let's relook at this in five years and see what's going on. And we obviously we look at it a lot quicker than that. Now we we touch base on a regular basis spot. I said to him I don't want to think like this is just gonna be for the pandemic or it's just going to be for six months. You know, she was really sick at the time. So I don't think any of us thought we would be doing it as long as we are now. And now I look at anything.

Gina Ablett:  It could be another 10 like it. So we were very honest and he understood, We've made some changes to our schedules here a lot more with some changes in nuns dementia. He's able to do that and and their relationship has changed since her dementia was transition. So it's easier for him to be here. The conversation with my dad was very different. They didn't want me to be. Nan's caregiver. They didn't want it to be my responsibility. And but they knew her wishes were to stay at home and they were struggling to maintain that and it was okay for a while when it was just kind of popping in every few hours between them and caregivers. But she kept having a lot of falls and we realized with her dementia, her risk management had just gone. So there was a lot of incidences in a short period of time where she just kept putting herself at risk.


Gina Ablett:  And and she ended up back in hospital during that time with an injury and I said to my dad, You know, I'm really unhappy with work. I remember ringing him in tears saying I'm so miserable. I don't want to do. I want to leave my job. And I've always been totally, don't leave a job so you have another one but we're in the pandemic. Nobody knew what was going to happen and he said Just leave will help you figure out whatever the next stage is. And I talked to him before about looking after Nan, but he'd always said, You know what's so hard for your career? I don't want to step back at this point. And then the next day after we had that conversation, I rang him and said Now I've resigned, can we talk about me? helping with now, And it had me and Will had already had the conversation and I said to him, You know, Will's on board with what this will be, this is what I'm willing to do.

Gina Ablett:  Oh, come on, a Monday morning and I'll leave on a Friday night and then you and Mum and the carers can fill in the weekends. and that worked for about,

Gina Ablett:  Four months. And although, I was here during the week, on a night time and could see things were changing on a weekend. She was, she just had a little bit of care at night times. Checking in on her. We had another fall. At night time ended up back in hospital with an injury and When my dad wrote me, I said We need to go to 24/7. So I'd had another conversation with my husband, and I said, I want to offer to come back on a Sunday to take another night. And then afternoon, he was okay. And and I said, But that will be my line. Now we will always be able to have at least Saturday. Of our life. and so I went back to my parents and I said that,

Gina Ablett:  And they were like, as long as you're okay with it. Again, the guilt of parenting and everything, they were reluctant, but I'm quite persuasive. So they let me do it. and, And they started covering the nights from that point. So they were doing Friday and Saturday night when I wasn't here, and, And it just started to get too much last year, after about a year and a half in. And because we have my other Nan And my dad had his own business.

Gina Ablett:  It's demanding and at the time she was still getting up through the night. So, you know, my dad had finished work, they'd come straight around here, so I could leave and then they put up to bed but they're not sleeping. And then, my dad has to go back to work on it. A Monday, it was just becoming in practical and I spoke to my social worker and I said, We need to look at getting some more aid. Because I didn't want her to have to go into a care home because of those two nights, but I'd kind of drawn that line for myself. I wouldn't take on anymore and it's very hard for me to not just be here all the time. but, It's the agreement we have and it, it works. When it works, when everyone's coping, it works.

Gina Ablett:  So yeah, it was interesting conversations all the way through, we tried to be honest with each other about, you know, if they're coping, if I'm coping, no, my husband's coping and we try and make changes and support each other as, and when we can. And I do take on. through my own choice, a lot of everything and but I'm in a better place than everybody else is with it. So it doesn't affect me anymore in the same way. And and I have three sisters but we didn't really talk to them about it. We just okay. Gina's moving in. This is what's gonna happen. They all have kids and families and things so it was never really gonna be a practical thing to ask them for any kind of help with what she physically needed. Somebody here for and and scheduling, that would have been an absolute nightmare.


Gina Ablett:  So and so yeah, we didn't really discuss it with them. We just kind of said this is happening. I hope you're all okay with it. And they were like, well it's your life, you know, Do if you want to do. So that shouldn't, yeah.

Katie Wilkinson: yeah, I mean Yeah, it sounds like you guys have been really like honest with each other through through all of us, even through hard conversations or like boundary setting. It sounds like your family's very communicative. and,

Gina Ablett: Yeah, I think at times we probably don't feel like we are but I think compared to a lot of people that I speak to him like Yeah we do talk a lot and we do we all physically in a distance to each other where I can ring and I need help, you know? And well somebody will come running and…

Katie Wilkinson:  Sure.

Gina Ablett: happened a lot more in the first year now. I'm like, I don't need anybody. I'm fine. Yeah.

Katie Wilkinson: Yeah, I got this. Yeah, and I mean, obviously sounds like you wanted to care for your grandma and can you talk a little bit about what's been like the most challenging in the past few years and what's been the most rewarding of caring for her, you…

Gina Ablett: Yeah. Oh no.

Katie Wilkinson: nearly full-time?

Gina Ablett: Unbeknown to my parents. Probably about three years before this all happened. Both my grandmothers within the same week. said, and You won't ever put in a care home, right? And I don't know if they've seen something on the TV, or whatever prompted them and I made them a promise to try. I said, I don't know where my life is gonna be. I never I didn't live here all the time. I'd lived in the US and lived down in London. So I know where my life was gonna be. When they asked me this question and I said, Oh, I can say, is, I'll try my best.

Both my grandmothers said, ‘You won't ever put in a care home, right?’ I made them a promise to try. When we started caregiving full time, me and my mom came up with these three rules: we would make sure we could always keep them happy, healthy, and safe. If we couldn't do those three things, we would have to make a decision against their request but in their best interest.

Gina Ablett:  And then when we decided to do this, I kept that in mind. And me and my mom came up with these three rules to do this. We would make sure we could always keep them happy, healthy, and safe. And if we couldn't do all of those three, we would have to make a decision against their, their request, but in their best interests, so, When I started this, I think like any caregiver that chooses to do it, a lot of people just get thrown into the circumstance and they just have to find their feet. I did choose to move into this. I came in with this idea that it was going to be hard, but the things I thought were going to be hard, I found easy and the things I found I thought would be easier. I found hard to start with. once I got processes in place of how to help her with certain things, And not beat myself up about making mistakes.

Gina Ablett:  And doing things that didn't work out, right? The hardest thing obviously really was letting go of of our relationship as granddaughter and grandmother and she knows me by name and she recognizes me by face but she doesn't acknowledge that relationship and we don't bring it up in conversation anymore. And we've had to progress that in conversation where Mum and Dad are here. I am trying. Although after 37 years of being alive it's hard not to call them Mum and Dad. But I try to acknowledge them as soon Paul to her. Those are the hardest things to really. Get your mind around, you know, with everything else that comes with caregiving and dementia in particular.

Gina Ablett:  They can change but you're you're wanting to stay the same with them and when you can let go of that as I have, it's just not painful. Whereas when you're trying to fight for that recognition for that acknowledgment for that. Moment. Every have heard knowing who I am. The only person that would benefit from that at that point is me and the only person, I'm the only people I'm hurting by fighting for that. Acknowledgment was both of us. So I let that go about a year ago and then it just all became a lot easier. And I, I am in a very good mental place with my caregiving. Both my hands are in very different stages. Bob's bedbound palliative care non-vocal about 95% of the time? and,

Gina Ablett:  but I have the best visits with her because I'm just in a place where I can see past their illness and I See them, and I try and make their moment with me as joyful as possible and it's become a mission of mine to Especially with Babs. If she was to go tonight, I would be very sad. But I would also be grateful that her suffering is over. but if she's here tomorrow, and I get to see her


Gina Ablett:  I want that to be the best half an hour of her day. So those are the the best things for me now is just creating those moments, you know, before it used to be like a win. If I figured out how to dress her without, you know, sweating and crying and was both falling over. Now I'm just grateful to just have them laugh. and, Acknowledge that in the ways that they can and just know that today was a little bit better because we did something fun or interesting or meaningful. So yeah, those for me are the best Best things of being a caregiver when you can have those moments.

Katie Wilkinson: Yeah. I mean, I love that. I think what you've just said is like, so encouraging, especially people that are early in their caregiving journey, who are like, this is impossible. I can't get dressed without crying and screaming and falling over to hear this transition for you, to, to it being like a really joyful experience. And I think is very encouraging to to people especially who are early in their caregiving journey. And,

Caregiving is a mindset

Gina Ablett: Yeah. And I think sorry. that's why I try and share on my posts now, on Instagram, because I just, I was that person that was in the dark, the crying the shouting, the swearing that, Oh my God, what am I doing? I can't do this. You know, she hates me all of those.

Gina Ablett:  Emotions. You know I hate her she doesn't love me all of those feelings that every human person that ever is cared for somebody that they loved before or was just in a relationship with in some way before goes through and I still get some of those feelings. They're not as intense most of the time but I'm able to let them go quicker. I give myself grace to feel them but I don't hold on to them because it just doesn't benefit anybody in my life. Including myself. and, I've always said from the very beginning that caregiving is hard, but it's like, it's 90% mindset. If you can get your brain around a process, that's a win. If you can get your brain around an emotion, that's a win.

Gina Ablett:  If you can get your brain around, who they are becoming and who they are right now, that's a win. And each time you do that, it just becomes easier.

How The Crafty Carer has built community and connection

Katie Wilkinson: Yeah, I love that. Thank you for sharing that and you started to mention your Instagram account also and I know the crafty carer has like been born out of your caregiving experience. Can you just tell us more about the crafty care?

Gina Ablett: Yeah, so my sis my eldest sister has her own business and she's on Instagram and back. Not last year, the year before in September, I got covid. And I was here when I got tested positive and I got isolated with them for 17 days on my own. My dad come to the window every day and I messed up and I'm terrified. She's gonna get it. And I was so tired and obviously not feeling great. And I decided I needed to do something to just keep myself awake to start with. So, I started making quitting on clothes and I made some fabric flowers and then I made them into brooches and then I sold them for a charity fundraiser that I did for Dementia UK, and it just kind of sparked.

Gina Ablett:  From a very dark hard time that I could still do something positive and I was proud of myself that I raised some money for charity and it just spared me on to keep going. So, although I get bored of doing the same, Kind of crafts all the time. There was this baseline where people are donating clothes to me, so I could just cut them up and make things out of them. And then my first November that I hit, I made some fabric wreaths but this Christmas season. my sister has her own businesses, like, that's

Gina Ablett:  That's your business. Like they're gonna sell you need. You you need to make some money to, to refund your crafting. If nothing else. You know, set up an Instagram page and I'm like I I'm not going on Facebook I don't know if I really want to do that I don't know how it works and she literally took my phone off me set up the the account made up the name and said Okay go And I was like every day, like people are sending, I don't know what to do. Like, how do you do it? She was so supportive and I was grateful that she was trying to focus me in a, you know, give me a bit of me back and a bit of identity of not just being named caregiver. But I was struggling with this whole Look at me.


Gina Ablett:  Look at my crafts, please. Will you buy them? And I'm a really good salesperson. I've worked in hospitality for like my whole entire life, I can sell anything for anyone. But selling yourself is a different Ball game and my cousin said to me, You know, the two names to your page, just share your story. Share your story. Share your crafts. Donate some money. See where it goes. And that's why I did. And it was very nerve-wracking for me, you know, I'm very honest on my page. I hate videos of myself. I hate my voice on recordings. But I wanted. Other people like me to not feel like I did at the beginning. And to see that they're not the only ones feeling most feelings.

Gina Ablett:  Share resources where we could and just create a community of people that I don't see here. You know, and it was created in lockdown. So I wasn't seeing other caregivers and other them. My mom. But we're very different caregivers and we're different people more in different mindsets and we're related. So my caregiving community kind of started through carry on dementia darling. I saw her page and I loved her Sunday stories and he used to send something in every week and people would then connect with me and reach out and say, You know, I saw your story and It I was never about numbers.

Gina Ablett:  It was always about connecting and community and I I have this community with crafting. I have a community with caregiving and then I also have where it crosses over and I have fellow caregivers who have businesses and I have people that were customers that have you know this happened last year when it was National Alzheimer's Day and I posted you know you know shout advocate national assignment stay. Let's talk about it and a customer message means a week later and said I just got back on Instagram. And my dad got diagnosed on Alzheimer's Day for Dementia. What do I do? And and I was like, this is why I do my page because I wasn't there. She may have seen somebody else but at the time she saw me and she reached out, You know, we've stayed connected and

Gina Ablett:  my page has become so much like I often forget to post about my crafts. I have great supporters, you know, and a lot of them are care. Givers and but I balance my time between creating for myself and those are the things I usually sell and now because I'm in a stage with Betty where she's joining in, on certain things that I spend a lot more time on activities with her and So yes, just trying to get that balance between what she needs. What I need and sometimes just making an extra 10 pounds so I can buy some more paints.

Gina Ablett:  That's always great.

Katie Wilkinson: Yeah. I mean, I love that like you and you just shared that it was like hard to get on Instagram and and I I very much identify with the, you know, weirdness of like, selling yourself, but I'm glad that I think it was your sister or friend who said, like, you have two pieces here and you've really made your page like Like the social part of social media, you know, and you've been able to make an extra 10 pounds to buy paints and you know you've grown a substantial following but like you're really focused on the the heart of it which is like building a community for other caregivers.

Gina Ablett: Yeah, and I really use it for that. I mean, just strangely, a lot of my care givers, I have a few there in either UK, but a lot of them are in the US. Oh what? I start my day. They're going to bed and I Messaged them all around three o'clock. They know they're all kind of getting out of bed and I try and start their day a bit positive and then when I wake up in the morning they'll send me a message when they're going. But so it really, it has generally become like a family for me that I can be completely honest with and I think until you're a caregiver.

Gina Ablett:  You just don't know. It's like a lot of things until you walk in those shoes of that thing. You can research. You can. Be sympathetic. You can be all of those things, but realistically, you just don't know what it's like to live with somebody 24 hours a day. That is a bit mental, like, You know. And I love now but she keeps me on my toes and Until you're here for a long duration of time with her. She's really good at hiding certain things, and you have to be with her 24 hours a day to really get to understand what the illness is, and who she is now. And the difficulties that come with that and my fellow caregivers just not, you know, all I have to say is like this happen and like, don't forget it. So it'sit's really been a savior for me. I think it's helped me.


Gina Ablett:  Get to where I am, it really do think without it, I would have really struggled because I got into such a dark place. Where other people's happy comments, I was like, what my life's not like that, you know, I think now, like, I must irritate people so much if they watch me, if they're having a bad day, because I'm like, Get some pants out. Let's you know, and a year ago, might get some paints out, she can't go on forks like, what's going on. So I I because I did not person. I'm very conscious of Who I'm becoming and becoming that annoying positive person. But I hope it just gives people literally that hope because I, Made through that dark, horrible cloud that

Gina Ablett:  You know, we often hear and you know, I don't know what's gonna happen tomorrow with Nan and her dementia, my change again, and I'm gonna have to reset this mindset and work through those difficulties and each time. I hit a new road with her. It takes just takes me a little bit less. To get to this point, you know, before it be a year and it'd be six months and now I'm just like, okay. Give me a week. We're just gonna figure out whatever the new process needs to be. And we'll, we'll move on. And But that's time and experience, and that was not me two years ago.

Katie Wilkinson: Yeah, yeah, the rebound is getting quicker but definitely takes takes a learning period and

Gina Ablett:  Yeah.

Katie Wilkinson: This question of like, How do you afford that? How do I afford this piece of the care? How do I do? I need a bigger house, whatever. All these questions are very unknown, and so that's sort of what we're focused on here. So I guess just to start as we pivot into talking about money and finances and, you know, the, your caregiving experience has been ever-changing. As Nan has different needs week over week, but maybe just to start like at large. What has the financial Piece of caregiving been like, for you.

How Gina has managed finances through the caregiving experience in the UK

Gina Ablett: Well, for me personally, the biggest thing is that I gave up the career. So, we went from a two. Salary household, you know, and I love my husband but I was the breadwinner slightly. And have been for a long time to me just going well that's gone. And we, because of how we do ourselves, I still have my house, I still have my bills, it's nothing changes. We just have one less amount of money coming into the house. So obviously our social life is very restricted. And and we've had to tailor make our spend to suit that. And, but I've quickly realized that, the support here in the UK is very different to the US. and I almost think we have it easy, although we get frustrated like

Gina Ablett:  Your healthcare system and your support system is absolutely insane. I don't know how American caregivers even navigated. So, people like you, helping people try and figure out ways and share those resources are amazing. But my frustrations here. So we have the NHS so if Nan has to go into hospital, all it doesn't cost us money. You know, perfect. We don't have to worry about things like insurance and things like that for healthcare, which is great. and when it comes to the social system, where we start looking at care, there is a tier system, so if you have care at home, They take into account your finances that are in the bank and money that you have as money, but not the house. so, as your money decreases, you get


Gina Ablett:  Support with your care, plan that you need at home. If that starts to become too high, like if I wasn't here with Betty, there's no way. They would funder 24 hours a day to stay at home. They would say they have to put her into a care home. They cannot financially support her She's not fully funded, but they would still have a huge problem with it.

Gina Ablett:  Whereas as the money goes down, you have to pay less and they pay more. So that is a great thing. If they go into a care home, they then take into consideration the house and they'll make you sell the house to fund the care. My biggest problem and I think it's just the way society is built. Is. My name has been a widow for 37 years. Her, my grandad bought this house 50 four years ago. It was the first one on the block and they worked really hard to buy the house to pay off the mortgage. My Nan worked up until retirement. You know, She maintained herself on her own. And the more she saved. The more she has to then spend in her social care.

Gina Ablett:  Whereas somebody who hasn't worked. That lives off. Payments from the government. They'll get the same care as my none. And I really struggle with that reality because I know how hard she works to try and put a little nest egg away, you know. And I've seen her liver life where she saved money, you know, she's never been rich but she works so hard. And I find it really frustrating that knowing that somebody that hasn't worked is going to get the same care. And yes, money does give you options of, you know, paying for a different company. If you don't like the one that's provided or and going to a nicer care home. If if you don't like the ones that the government provide at their level,

Gina Ablett:  but the bottom line is the sale of a house will only cover care for so many months. And then they pay for anyway. So that for me is how the system I struggle with the system here. For my non. From my point of view and I am classed as an on classes of family. Unpaid care giver, but I do get financial aid. Of like, 60 pounds a week. so, if I did not have my husband, that would be nothing. And again, it's that cost. So anybody who does 35 hours of care a week, gets the same amount as me and I do 35 hours in a day and a half.

Gina Ablett:  So that is where you start to get frustrated with the system because you're like are you kidding me? Like they they don't support you to keep them out of the system. They make it too easy to say just put them in a home. and that is, A frustration for me because I just think you know, they want to be at home. That's their wishes help us do that. Don't make it so hard and complicated but That's not how the system works. And right now. Sorry.

Katie Wilkinson: It seems it seems like it's more expensive for the government to do it that way. Like it isn't it more expensive them to, to have someone in a facility than it would be to fairly compensate. Family caregivers.

Gina Ablett:  Technically. for somebody like, Babs. It's about on par because she gets set amount of time. Visits four times a day. She doesn't need 24 hours supervision but somebody like Betty that needs somebody with her the full time. It would become more expensive because you've got to pay somebody to be here 24 hours a day. So Department of Care home. You're paying somebody to be in a care home. There's always somebody around so it It's depending on their situation and their demand of what they need. And as The system is designed for as they get worse, you get more benefits. And again, that's very difficult because Bob's in particular, and they've both been through this process, but they never passed past it, which is why the system is social and health.

Gina Ablett:  So, Babs has got more medical needs to her funding comes out of help. So she's fully funded. Betty has less health needs, but needs more care, because she's more physical and higher risk. but she only gets apart funded. so, it's a vet because we're on both side of it, it's very frustrating because to get on to healthcare You have to go through like this 16 questionnaire.


Gina Ablett:  Interview with people that makes you relive. Every nightmare that every caregiver has, you know, can you put one to five scale on How bad is this swallowing? How about how often do they fall? How much weight have they lost recently? And I understand there has to be a scale but one of the things I try and do here and I go and do talks at our local social services. Because I get so frustrated. It's, I hate feeling like a tick box. I hate feeling, like, I know you need this information, but I am a human being and so is my nan. So have a conversation with me. Know what you need to ask. but just ask it in a way that isn't so like, so, you know, Can she swallow does she choke off then you know, it's it just feels they make a very personal experience, it can feel very in personal and and it

Gina Ablett:  Sadly all comes down to money. Because they just want to know where the money is coming out of and whose part is going to get emptied fastest. So it is one of those things that people don't like to talk about. But it is something that does usually impact your care especially here because if you don't understand the system, you just do as you're told and then you might not, they might not be doing or getting the care that you want for them. And people don't know what to do. I know when we first started, we had a care provider. And they were awful. And I'm like, this cannot be our only solution and I

Gina Ablett:  Remember saying Tom, I'm gonna do with social services, this is ridiculous and I would ring every single day and go. Well, this has happened and this has happened, and this has happened and it just became worse and worse and worse. And I'm like, I want a different provider and it was like, well, they're the primary, the primary means first. They are not the only company. And right now, we're paying for our provider. So I want you to tell me who the other providers are and we want to change. And we did change and we've been with the same company for both the nuns since then and you know, Touchwood nothing's ever perfect but it is a lot better than that was. But if you don't have somebody like me, A lot of people in the system don't have family care givers, they're on their own. It's so scary to me that they will just get lost in a system that is about

Gina Ablett:  Saving money, or Putting money in the right direction where it's not necessarily beneficial to the person. And that is very frustrating and then the other thing that I found is that we have charities. Here, we have Supportive networks for care givers and people that need certain kind of resources. They're like, they're a secret But I have been looking after them for two and a half years, I only found out about a caregiver support group in November.

Gina Ablett:  And I have used them so much because they do a local cake, a care support group and it's not just about going and talking, they actually do do practical support and different care groups and everything. I'm like, How did I not know about you two years ago Why did social Services not say? Do you know in your local area? Because I search but I just must have missed them. The other one is the incontinence charity. So here we can get some of incontinence products. Funded Once though, it incontinent to some level, you can get it funded, we didn't find out about over a service. That was a government run. My mum's neighbor told me.

Gina Ablett: Did you know, she just happens to see me bring the shop in and she's like, why you buying those? And I'm like, Well, she needs them. And she's like, Yeah, why are you buying them? You can get them for free. This is the number. This is what you need to do, ring, social services, tell them to refer you. And I'm like, okay, I'm gonna speak to every single person that I know that is looking after a loved one if they're wrinkled. You need to ring this number.

Katie Wilkinson: That's a while too because that's like the kind of cost that adds up like by you…


Gina Ablett:  Yeah.

Katie Wilkinson: buying a package is okay whatever. But like you have to buy them all of the time. This is the small cost that's gonna add up over time and it's wild that you didn't learn about this for several years into the caregiving experience. Yeah.

Gina Ablett:  Yeah. It's it's crazy that nobody like it should be part of my welcome pack. A cure can't give a and if you come across these issues, these are the charities in your local area that can help you. And It's I just find it so frustrating that that is not how it is. And it's almost like well, the funding's not Huge. So we'll just keep it a secret till you find us. And some of the charities you speak to especially the care support, Charlie that I have joined. They're like, we're trying to get out there more. We're trying to find people, but where do you go to find? Family, care, givers. And I'm like workplaces. hospitals, you know, like

Gina Ablett:  Those those places where this all starts and those you know, and they are trying to reach out and get people. But I'm like Why did my social services just not. Tell me about you. You should have been Gina if you need support. This is a really good resource. And, you know financially, they have services. I'm trying to Go to an Alzheimer's and an expo down in London next week. And they would they it was too last minute, but they were trying to fund me to go or at least partly for me to go, because they knew that it was part of my caregiver growth that they wanted to support them and they know that I don't have the spare phones to do. You know? And they they just rang me today and said, Do you do all of your They said blogging. But did you do all of your

Gina Ablett:  Stuff on your phone And I said, Yeah, my laptop broke a few weeks ago. I a few months ago. I can't afford to get it replaced. And they said, Well, we might have an iPad or tablet that you can use And I said, Well that would be great. They nearly signed up for an online. Dementia course, the other day and they said you couldn't do it on your phone, it's too involved. So now I'll be able to sign up for that. But why didn't I know about these things, two years ago, you know, and I think about all the the support they've given me in such a short period of time. You know, they have people that donate free massage. I've been for a Reiki appointment. I've had a free back massage. Things that caregivers will never justify spend in the cost on.

Self-care is hard to come by (and expensive) as a family caregiver

Gina Ablett: You know, we all talk about self-care but actually, physically, won't be able to afford it, to be able to physically fit into your time, and have your loved one looked after, you know, just taking a couple of hours off to go for a massage is not just taking a couple of hours off and going for a massage, it's paying for a caregiver for a couple of hours. And then for me, it's taxes to get where I need to go. And then you're paying for the actual process of enjoying yourself. We don't have that money to do those things, and it's I I try not to get angry about it because it's

Gina Ablett:  As in this is just my life and me and my husband are very much in the place where we're just grateful for the time that we do get. And the time that we have, we make a special as we can, and it doesn't necessarily mean that we can go stay in a five star hotel on a Friday night every week. But we, we appreciate what we have, and I do think that that's something that I learned that the less you have, the more you appreciate what it is. Be it finance, be its spare time, be it relationships, you know, whatever. Caregiving is cost you whatever you retain you are very grateful for. And hope that you don't lose anymore.

What do you know now that you wish you knew when you started the caregiving experience

Katie Wilkinson: If you could go, I don't know this question. It's hard because it's like if you went back to the beginning it's like you don't know what you don't know. So you don't know what to ask or where to find this but like looking at it now is there anything you could have done differently at the beginning to have found these resources and maybe this question is hard because it's like You were so different, then.

Gina Ablett: Well, I think to find the resources, I think it's easier. I think that I should have been more vocal. I've learned with the social system, the louder you are, the more help you get. And I but all of our family, especially when we started the process, we were so scared. That we would be seen as like a Non-loving family because we needed help and it's not that we didn't want to do it. Sometimes it was too physically demanding or you know, it wasn't practical or emotionally. We you know, people didn't want to do certain things. And there was so much caregiver guilt and family guilt of that. So I think going back and just saying like it's okay to ask for help and it's okay to demand it. Me and my mom there are stages where we feel like we're working for a care company? Like, I'm supposed to get


Gina Ablett:  Four hours of funded free time off a week to support me as a caregiver. So we don't burn out because they know if I burn out that you have to go and care. Hi.

Gina Ablett:  For that time is unstructured. So my care company because they are struggling the industry struggling. They give me it when it suits them, not when it suits me on them, they change it. Last minute I'll look in the morning and I'll go oh I've got a curse it today and then I'll they'll not be here at that time and I'll look again and then it's tomorrow. and I, Used to get really angry about it. I'm like, I stopped organizing friends. I made my plans. This was before Bob's had declined to the stage that she is because now I use all of that time to see her anyway but before, you know, I try me up with friends and go for a walk for half an hour, or grab a coffee with somebody, and I would have to cancel last minute and it was becoming so frustrating.

Gina Ablett:  That I got to the point where I actually wrote in a journal that I started a year ago. And I said to myself When you're numbers at 64, that's her address when you live at 64. You don't matter. Let go of what you want because it's more frustrating to try. To help yourself. And in the time it was the right thing for my brain to do. But that was so sad to read like six months ago I'm like that it's not true and the fact that I got to the point where I felt as though I couldn't ask for more to help me just survive caregiving and just gave in to having nothing.

Gina Ablett:  That made me cry when I read that again. And now I'm like, No, I can be flexible, but I need to and I'm still not great at this. I can be really good at it with my mom. I'd like no tell them. That doesn't work for you. Tell them you're not gonna do it. Say, That's not great for buffs, but in this house, I'm like, Yeah, sure. You know, you can do whatever you want with my case. It's, I don't mind. but I ran I didn't bring them and like, Two months ago when they gave me a kisser. On a weekend when I wasn't in the house.

Gina Ablett:  And I'm like, guys, you know, our setup, you know, Mum and Dad are here like why, why are we doing this? And they're like, Oh yeah, we, you know, we just thought it we couldn't do it in the week, so we'd give you it the weekend. So you gave it a lunch time on a Sunday when I wasn't here. You didn't tell Mum and Dad that in the middle of eating with Betty and somebody turns up and goes, Leave the house for an hour? No, that's not going to really work for us. So, I put my foot down a little bit, so they're a little bit better at not, once it's on the rotor. Not changing it, but I've learned that as soon as you start saying, Oh it's okay, don't worry about it. You slip into this, they won't mind. Will will take it from their time. Or we'll, we'll take it from their rotor. They'll just cover it. They're a loving family. They'll never say no. and, We are looking family and we will never say no, but

Gina Ablett:  You, you need to realize that you're starting to take advantage of our kindness and You break yours. And I said this, to the company, I said, You get two households because we can survive looking after my nuns. You have two contracts. You break us because you don't support us in the way, we need it. Guess what? We have no option, then you lose two contracts, you want to put it down some money, you lose two contracts and they'll be going into a care home. Because if I break the system breaks, And they're like, okay, yeah, you know. we understand as soon as you try and take money off them, The service just gets so much better. It's very frustrated.

Katie Wilkinson: Is not true. Yeah, across the board. I think. Yeah use that something about like asking for help and they're being like a level of pride and asking for help and I think that's common is like You know everyone says ask for help, you need to reach out and ask for help but then there's also this feeling like I don't want to be embarrassed or It's shameful or you know any any other reason but I think what you've just said is really important. Like Stand up for yourself and ask for what you need because no one else is going to.

Gina Ablett:  And a lot of people like especially with an illness around dementia, you hear it and people just disappear. They don't know what to do so therefore they don't do anything. And that's why I'm so open about. My journey I protect the nuns and I share parts of what they do and who they are. So people can see relevance but it's now mostly about my journey and the more I am sharing about me. the more people are reaching out and saying I'm in the same situation like just the other night I got a break and me and my husband went through to the bar. and, we bumped into somebody that I'd not seen for ages and we my whole break was just her telling me about Her mother-in-law having Alzheimer's, and


Gina Ablett:  was having that conversation and my husband was like, That's not really a break? Is it? And I said No, but this is why I do it because people won't talk to anybody about caregiving or the all this illness. Because there they are embarrassing. They don't know what to do. People think. By saying they can't do this. It's also a bad thing. No, it's not caregiving is not for everybody. It's okay to say that you actually love your loved one just as much by saying, I can't look after you. I'm gonna find the right person to do that and I think that's the biggest barrier and it comes to me because people think because I am so invested in looking after the man's home, I will judge them for saying, Oh, I've put me more men. I care home and I'm like great. Well done, you made that decision. You decided that that was the right move for her for you for the family. That's okay.

Gina Ablett:  You know, and I I tell my family that all the time, this is my decision to be here. I can survive this for probably a very long time. Anybody in this setup can't there's no guilt to that. You know, if we have to make changes, we make changes, we have to realize that once you start down the route of being a family caregiver, it is about family. This affects every single person that is connected to me in my life, be it, friends or family. And yeah, I'm not probably gonna give up caregiving for a friend, but if the family starts to suffer too much, then you have to take some of that into consideration. And I do all the time, I'm conscious of my sisters and my my nieces and my nephews and my parents and I have relinquished myself of responsibility of protecting them. And trying to fix things for them.

Gina Ablett:  Because that was crippling but I understand their situations and I support their opinions and their decisions on what we're doing. You know, so it's it's a tough, our journey and you know, like you said, people don't like to talk about money. but, People say money doesn't buy happiness, but it definitely makes it easier if you have it. You can be miserable with money, but money can definitely help. Stabilize your life. So that you can enjoy things. You know, there's so many things I want to do with babe, I just can't afford the supplies, I can't, you know, today, she told me she wanted a piano.

Gina Ablett:  She wants a piano. I've managed to get somebody to donate me a keyboard.

Katie Wilkinson: That's amazing. That's awesome.

Gina Ablett:  And it was again, it was like one of those moments where I'm like, Okay, I can't afford to buy keyboard, but I can put on Facebook and I can ask my local friends. Does anybody got everyone's always got like a random keyboard in the club that they had from school? It doesn't have to be anything fancy but none said, You know, she told me this story from her childhood and I'm like I'm gonna make this happen and somebody very families like, you know what, we actually do have one and I'll bring it around tomorrow and we don't need any money for it. and I'm like, you know, It's not begging. It's not, it's not doing it. It's just saying, If you have something that you don't use, I think it would share my nano and we might get five minutes of joy out of it and and then we don't use it and I'll pass it back or all, send it to somebody else or use it. But if she gets five minutes out of joy just her face for myself.

Gina Ablett:  She actually remember the conversation from the morning and I said to her, Guess what's coming tomorrow? I'm sure what I want a piano and she's like What about okay Well, it's a keyboard but it says big as a piano and you can put it on your table and she was like, Oh can we put it in the window? And I'm like you can put it wherever you want them. Yeah. You know, so finding ways You have to be 50 You know you have to find ways to get things to Sometimes make things more interesting and not all of Joy's free. There are definitely things you can do at home to create. You know, we played for 25 minutes yesterday with a balloon and she's laughed the most. She laughed in like a month. but some things you just wish you had that little bit more finance to be able to just

It’s okay to ask for help as a caregiver


Gina Ablett:  do simple things for me because I don't drive and we don't have a vehicle that we could get nanning anymore. Anyway, just going for a coffee, that's not in walking distance is 20 pounds in a taxi there and back. and it's like, Is it worth the money? The answer is Yes, of course. It is. But is giving you afford 40 pounds for a two pound coffee. Probably not, you can't really justify it. So it is that frustration.  So it is about finding the charities, the support groups, the things that can help you do things and, and just removing that little bit of pride that says, I can, I can support myself and we can do everything on our own. No, who can ever do anything on their own? You know, you can't just as growing up, adults, you need your parents help, you know.

Gina Ablett:  So why is a caregiver? Do we think we just say that we don't need any help? We do we're still people we're more limited and restricted than most. It's okay to ask for help and it's okay to take it if it's offered and that is coming from somebody. That is very independent and does struggle to take help from people. I hate it but it's in man's best interest if I do. So I'm like, Okay, if I can't do it for myself I can say yes.

Katie Wilkinson: Yeah. Yeah, I love that. And that piano story did just bring me a lot of joy for free. So so thanks to the Facebook marketplace person, who donated a piano.

Gina Ablett: God knows what we're gonna be happening tomorrow when it arrived. But why have I got a piano? I don't, I don't. Know. My child just got the window. But for today, it's given…

Katie Wilkinson: For today.

Katie Wilkinson: Yeah. And

Gina Ablett: yeah, I'll take

Grace given to yourself allows you to to breathe as a caregiver

Gina Ablett:  And give yourself grace. Things like things will be hard, no matter what stage of the journey you're at from the beginning middle and end. This is it called a journey for a reason and giving yourself grace, to feel the way you feel and make the mistakes that you make, just, Don't beat yourself up and just give yourself that grace to realize that it's just a moment to learn from. And tomorrow that you're not do that again and you'll and if you do, it's okay. Grace. Given to yourself, allows you to breathe so much more than if you suffocate yourself with. Self hatred self-doubt and grace can be very freeing. And I think it's how I've been able to really start to enjoy caregiving because I don't beat myself up. When things aren't perfect and anybody that knew me before, caregiving,

Things will be hard. Give yourself grace to feel how you feel and make mistakes. Grace, given to yourself, allows you to breathe so much more than if you suffocate yourself with self-doubt. Grace can be very freeing, and it's how I've been able to really enjoy caregiving. I don’t beat myself up. Now, I give myself grace to say that my plan didn't work. And that's all right.

Gina Ablett:  Was a bit of a perfectionist and things had to be done my way. Now, I just give myself grace to say that my plan didn't work. And that's all right.

Katie Wilkinson: Yeah, I love that I call myself a recovering perfectionist because it feels like it's a, you know, forever learning journey. But if people want to follow along with you and and the crafty care online, where can they find you?

Gina Ablett: So I am on Instagram only as the crafty carer and that's where they can find me and it's a welcomed open door to anybody that just Might need a help or advice, or support and yeah I generally do feel like it's a family for me. So if you're joining me just But no other reason and just to try and get another follower back, don't bother because it's my community that you know, we support each other. So yeah. Happy to take any new family members on it anytime.