Roadblocks and Signposts for Caregivers

Sarah Merriman joins this episode straight from the United Kingdom.  Sarah was the primary caregiver for her Nana for seven years.  Her grandmother experienced cognitive deficits and despite Sarah's attempts to have her assessed, her grandma was resistant.

Sarah was a sandwich-generation caregiver, feeling torn by being pulled in so many different directions.  Sarah now recognizes how that impacted not only her, but her family, her job and her grandmother.  The toll it took on her led to a total break down after her grandmother passed away.

There were roadblocks along the way that contributed to the stress of the journey. The biggest was her grandmother’s resistance to being assessed - preventing her from receiving a diagnosis of dementia until three short months before her death.  This roadblock prevented doors being opened to supports that they both so desperately needed.  Supports that could have alleviated Sarah’s stress.  

Sarah did not identify as a caregiver (or carer as they are called in the UK), and as such she was not able to access much needed information, support and resources.  But Sarah learned from this and once she regained her strength and returned to work, she went on to obtain a master’s degree in Dementia Studies and now is a huge advocate for caregivers, and folks who are living with dementia and early onset dementia.  She truly signposts others to caregiver resources.  

So, if you are looking after someone who couldn’t manage without your help – you are most likely a carer or a caregiver; by calling yourself a caregiver you can remove what may be one of your roadblocks and learn of resources and supports available to help you along your caregiving journey.

If you’d like to contact Sarah, you can do so through her LinkedIn profile; and be sure to check out her blogs, articles and information about her poetry and reminiscence sessions for people living with dementia.

Transcript

Thank you for tuning in to the Island Treasures podcast.

We value the insights shared by our guests and hosts, but it's important to note that their personal experiences are intended to inform and encourage, and not to replace professional, legal, or medical advice.

With that, we are ready for today's exciting episode.

Welcome to Island Treasures, a place for caregivers to hear encouragement from other caregivers, who by sharing their experiences offer helpful information and resources for your caregiving journey.

I am your host and caregiver consultant, Alison van Schie from beautiful Vancouver Island in British Columbia, Canada.

And before we dive in to today's episode, I want to let you know that Island Treasures is set up to receive fan mail, so you can text the podcast directly through the link at the bottom of the show notes.

Hailing from Northern England, my guest today as a young working mother was a caregiver, or carer, as they say in Britain, for her grandmother for seven years.

Her grandmother, who she calls her Nana, had cognitive deficits, but didn't receive a dementia diagnosis until three months before she passed away.

Without that diagnosis, the road was blocked to supports, making it a very difficult caregiving journey. Although it almost broke her, she was able to turn things around. So let's hear more as I welcome Sarah Merriman.

Thank you so much for joining me today, Sarah. It's wonderful to have you on the Island Treasures podcast.

Thank you. It's lovely to be here.

So there's a British accent there, and I'm even more thrilled because of that, because I feel so at home with you being a fellow Brit.

Thank you. Thank you so much. Yes, I live in the...

Well, I would call it the north of England, but some people would argue it's the East Midlands. But I like to think of it as the north. It's in a small industrial town called Scunthorpe in North Lincolnshire.

And I have a family member who lives in Scunthorpe.

Isn't it a small world?

Wow. Yes, it really is. Because so many times I talk to people, even in this country, that don't know where it is.

So yeah, that's incredible.

Yeah, very small world. Anyway, let's dive into your caregiving story.

Okay. So we need to rewind quite a long time now, really. It was my nana that I looked after.

My nana was my mum's mum. And because of the family dynamic, my mother wasn't around, and my nana was getting older. My grandfather had just died, and my nana developed vulval cancer, which was, you know, which is really awful.

And this was kind of the start really of her dementia journey. She ended up going into hospital in Nottingham for radiotherapy, which was quite aggressive.

And while she was in hospital, it became apparent that, you know, she was becoming very confused. They didn't know at the time if it was delirium. I have to say she didn't receive the best care at all.

And when she came out of hospital, I noticed a real decline in her cognitive abilities.

I thought at the time that it was to do with the shock of the treatment, and it was the, you know, everything that she'd been through, sort of some kind of post-traumatic thing that she would then get over.

But at that time, I had never met or never knowingly met anyone with dementia. I had got no experience of dementia at all. I was working for the local authority as a fraud investigator.

So it wasn't on my radar, and it was only, obviously, dementia is a gradual progression, and it was only as time went on and things didn't improve, and then things started to slide, that I realized that, you know, that there was something wrong.

This wasn't just something temporary. But the difficulty that I had was that now my nana lived on her own, so she had nobody living with her.

She lived 30 miles away from me, and I, at the time, had children who were six and eight, and I was working four days a week.

My husband was working really long hours, you know, trying to sort of climb his way up the career ladder, and the whole thing was just really difficult.

She wouldn't accept there was anything wrong with her, and every time I tried to suggest that, you know, we sought medical, you know, medical advice or that we spoke to a doctor or a nurse, she would just shut it down and say, you know, there's nothing wrong with me. Everybody forgets things as they get older. So that was the start of it all, and it was, yes, it was really, really difficult. It went on for seven years before she finally passed away.

And I finally got a diagnosis for her three months before she died. Yes. So I cared for her for all that time with no diagnosis of dementia, and consequently, no support, because she had no diagnosis.

So none of the doors that would have opened automatically to us. If we'd got that diagnosis, none of those doors opened. And it was the hardest thing that I've ever done.

I, you know, it literally broke me. I always say this, it broke me physically and emotionally. I didn't take care of my own physical health needs because I was so intent on making sure that she was okay.

So I put off surgery because I knew I would be unable to drive for six weeks. And then there would be nobody to look after her. And that came back to bite me.

You know, I was back and forward to the GP on sleeping tablets, on antidepressants, you know, the whole thing. And then after she died, a year later, I had a total breakdown, and I ended up taking voluntary redundancy from my job.

It took me a long time to pick up the pieces. I went to cognitive behavioral therapy for six months. And then I moved into the charitable sector.

I went to work for the Alzheimer's Society to start with.

And then that was the start of my career over the last 10 years, moving between various charities, but with a focus mainly on dementia because of my experience and because I didn't want other people to have to go through what I'd been through.

So that was what drove me to do what I do now. And that was the catalyst to the whole life change.

So you were caregiving. You were a sandwich generation caregiver because your children were so young. Was she living in her own place for the whole time that you were caregiving for her?

She lived in her own place to start with for about the first four and a half years.

And then she moved into again against her will, but there were people that lived around her that persuaded her to do this. She moved into a kind of sheltered accommodation, although it was more than sheltered.

It was a communal house, and she had her own room with her en suite bathroom, and she had a fridge, a kettle, a microwave.

But they provided meals on site, and they did the laundry on site, but they didn't have 24-hour staff on site, so they came only during the daytime. And my nana still had a key to the front door.

So it was kind of like supported living, but the difficulty was she still had so much freedom, and because she didn't have a diagnosis of dementia, she would go off and catch a taxi into Lincoln.

She lived in Lincoln City, and then forget where she lived and couldn't find her way home. She still had access to all her money, so she was giving people money inappropriately. There were all kinds of issues.

She was falling regularly and hurting herself, but the difficulty I always had was whenever I tried to raise issues, to raise safeguarding with the local authority or to speak to her GP about my concerns, the response I would always get is, your nana

has the capacity to make her own decisions. Even if those decisions are unwise, she still has that capacity.

And I would argue with them, no, she doesn't have that capacity, but because she didn't have the diagnosis and because she wouldn't engage with them, they couldn't say that she hadn't got the capacity.

So it was this, you know, it was this literally this no win situation for me and watching my nana make these poor choices, hurt herself, you know, be really upset. It was really difficult.

It wasn't until three months before she died that she fell really badly one night in her ensuite and cracked her face on the sink. And I went to see her and she literally had one whole side of her face was was black and purple.

How she didn't break something, I don't know. But they took her into hospital and they were going to discharge her back there again.

And it was at this point after seven years of looking after it, it was at this point that somebody had mentioned to me that, you know, that I could step up as a relative and say that I wanted to call a best interest meeting, which I did.

And they held a best interest meeting. And it was at that meeting that I finally got the doctor to admit that she had dementia.

Because I was going into the hospital to visit her, and the nurses were taking me to one side saying, you know, this seems very confused, you know. And in fact, one of the nurses said to me, do you think she might have a bit of dementia?

And I said, a bit of dementia. I mean, at the time, I was, you know, when you're at that stage, you don't know how to laugh or cry. And I said, oh my, I've been telling people this for years.

Of course she's got dementia. It's obvious to anybody. But they were still prepared to let her go back to that accommodation.

And I said, there is just no way she's safe to be there on her own. You know, she will kill herself if you let her go back there. And so finally, they agreed that it was in her best interest to go into a residential home.

But because she was self-funding, it was then down to me to find a residential home for her because there was no social worker involved. And at this point, I was seven weeks post total hysterectomy.

Oh, boy.

And had only been driving for a week. And I was driving around care homes in the half-term holidays with my young daughter, trying to find somewhere suitable so that my Nana could be, you know, released from the hospital.

Again, the whole thing, when I look back, I don't know how I even had the strength for all of this. And I finally found a place that was about five miles from where I live, a really nice old manor house that had been converted.

And we moved her in, in the March. And on the 12th of May, that year, she died.

That didn't give you much time of relaxing or even exhaling. So when you were driving around post-surgery, in the middle of school holidays, it was a crisis. You were in panic mode.

You had to find a place.

Yes.

And you mentioned that there was no social worker. That's tragic. Social workers are such a gift when you're a caregiver looking for resources.

I was a social worker, so I totally know about the resources, and we are a real resource for folks. That best interest meeting. Why did no one suggest that to you earlier that you could have called one?

I think because I never identified as a carer, and this is something that since I've gone into working with family carers of people with dementia, I appreciate a lot more.

I always thought that somebody who was a carer was somebody who provided full-time care, and they received carer's allowance, and this was their job, if you like.

So I never identified as a carer, and because my nana didn't have a diagnosis of dementia, I just felt like I was a family member helping to look after her. And so I didn't access any support because I didn't know who to talk to.

I tried talking to social services, and in this country, social services are very, very stretched, and unless you are literally in crisis mode, you know, you're very lucky to have any involvement.

And if you're self-funding, when it comes to nursing or residential care, you basically get given a list of all the places and told to go and find somewhere because they're not allowed to recommend anywhere.

So it was a question of who would I have got to help me? I mean, now I know through my work, all kinds of organizations, I signpost people all the time to them, but I felt like I had nobody fighting my corner, you know.

But if just one person had, whether it had been a nurse at the GP surgery or the doctor, or if just one person had kind of taken me to one side and said, look, this is what you need to do. But I was just totally lost.

And like you said, you didn't know. You didn't know what questions you asked. You didn't know that you could benefit from calling yourself a carer, or as we say, a caregiver.

You just didn't know. You can't fault yourself for that. But you can learn from it, which you have done.

Yes.

You help other folks now.

I always say that to people, that you don't know what you don't know.

And that is the truth of it, because I meet caregivers all the time that are struggling. And you know, but they would come to carer groups that I used to run.

And you know, I would send them an e-mail with signposting them to every organization that I could think of that would help them and tell them to go and get a carer's assessment, to get in touch with, you know, the local carer support center and all kinds of things, which I wished somebody had said to me at the time. But yeah, there you go. It's hindsight, isn't it?

It is hindsight. But tell me about that carer's assessment. Who conducts that?

It varies depending on which area that you live in.

Sometimes it's the local authority that do them. Sometimes the local authority outsource it to the carer's center. And basically, that's an assessment that they do to see how you're coping as a carer and to see what you may be entitled to.

So whether that be so many hours of respite care or helping you with potentially, you know, knowing what kind of benefits to apply for, things like that.

You know, everybody is entitled to a carer's assessment, and that's a really useful tool for people. There's a lot more knowledge about it now, I think, than there was back then.

But yes, and most areas in, I would say every area in this country, has a carer's support service. So you can go to them, and they will provide advice and support, and they run groups, you know, peer-to-peer support groups.

So they are great, but you just, A, you need to know that they exist, and B, you need to identify as a carer to be able to access them. And so there's still quite a bit of work to be done in reaching people and helping them to identify as carers.

People think that if they've got a relationship with the person that they're looking after, that, oh, this is actually my wife or my husband or my mother or my sister.

So they think that they're just helping to look after them in the familial way, as opposed to identifying as a caregiver of that person. So there has been quite a lot of work done in this country.

Instead of saying, are you a carer on leaflets and in the press and social media, they're kind of reframing it by saying, do you look after somebody who couldn't manage without your help to make people think about, well, yes, I do.

And then that means that you are a caregiver, and therefore you should be accessing this support and help.

I also say that calling yourself caregiver is a key that unlocks resources.

But again, if you don't know, if you are considering yourself the dutiful granddaughter, which you did, doing what any dutiful granddaughter would do, you're not calling yourself a caregiver.

And you've learned that lesson, and now you're helping us all hear that lesson. Yes.

Yeah. Learned it the hard way, but there you go. Sometimes I think things happen for a reason, and when I look back, I would never have been where I am now.

I would never have moved into the charitable sector. I would never have had such a passion for dementia education and support. I would never have done my master's degree in dementia studies.

My life took a completely different trajectory because of what happened to me. But I sometimes think you have to go through these things, to, you know, they shape who you are. It gave me a passion, and now my passion is my purpose.

So.

But your prior life also gave you skills that really feed into what you do now, and the path, the journey. This is where you're meant to be. And like you say, you've got passion and purpose.

And isn't that a wonderful feeling? Yeah. You had a reboot, though.

You had a breakdown after all the pressure of caregiving for seven years. And not knowing and learning and scrambling and being frustrated, you were entrenched in caregiving, and it took its toll on you, like you said, and you needed to reboot.

It took you a year to kind of get your footing again.

And it sounds like you made an amazing shift and do some amazing work now with those skills that you learned through your lived experience and also through your professional experience prior to caregiving. So that's my two cents worth.

Thank you.

Or two penny worth.

Penny worth, yeah. You can say two cents.

We don't have cents anymore. They got rid of the cents in Canada.

Did they?

They did.

To be fair, though, I mean, we still have all these coins, but nobody uses cash anymore. It's difficult to find a place now that accepts cash, or, you know, if you do try and give it to people, they look a bit gone out.

You know, I traveled across the Humber Bridge yesterday, and there are big signs now that say card only.

For the toll.

When it was cash only. And if you don't, I often think especially about, you know, older people who may be still like cash, because a lot of them do, you know, there are so many places that you go.

And if you're not carrying a card with you, you are literally stuck now.

I think you still need both, because if ATMs or the plastic fails for whatever reason, you know, cyber attacks, you need to have some cash on hand.

Strangely enough, that leads me into Manana. That was always a huge thing for her. She always had to have cash.

It made her feel safe. And the difficulty was, as her dementia progressed, money became something she was fixated on. And unfortunately, she had a...

I'm going to say this slightly. She had a cleaner who would visit her every week. There was no evidence or not very much evidence of cleaning.

She was the daughter of somebody who used to garden for her. And Manana would give her the bank card to go to the local co-op and pick up a few bits and pieces, but also to take 250 pounds out the cash machine.

And then if I went two days later, because bear in mind at this time, I was already doing online food ordering for Manana. So she was getting Tesco food deliveries of her weekly groceries.

So the only thing she would need is maybe a little bit of bread or treats or whatever. But she would take 250 pounds out.

And then a few days later, if I went to see Manana and questioned where the money was, Manana would maybe have 20 pounds left in a purse or 30 pounds.

And I would say, but you've got a receipt here showing that the money was taken out three days ago and she'd say, oh, I don't know, I need money for all sorts of things. You don't know who I pay. I pay all these people.

And I knew that she was giving it to this woman. And I actually, that was why I raised the safeguarding with social services. And they actually went to see my nana.

And my nana said to them, yes, I give her money, but it's nobody's business but mine how much I give her. But the difficulty was at this point, I was a signatory on my nana's bank account. So I could see what money was going out.

I could also write checks so that I could pay for things on her behalf. I could write a check and pay a gas bill or whatever, but I didn't have the power of attorney at that point. So I couldn't do anything about it.

So I knew that she, for example, she hadn't got enough money in her account to cover things because this money was constantly going out of her account.

And they said to me, again, she has no diagnosis of dementia, it's up to her what she does with the money. And I said, but even if she can't afford to pay her bills, well, you know, that's a poor choice, but it's her choice.

And it was, it was things, I mean, honestly, I used to say, I felt like banging my head against a brick wall. If I heard the phrase, she has the capacity to make her own decisions once.

I heard it a million times, and this was always the stumbling block. In fact, she'd made a power of attorney years earlier.

And when I went to the solicitors to try and get that power of attorney invoked, because the solicitor would have had that power of attorney, not me, the solicitor spoke to me and my nana, then spoke to me on my own, and I voiced all these concerns.

Then they asked me to leave the room and took my nana in and spoke to my nana. And then they took me back in and said, we feel like your nana's perfectly lucid and she's got the capacity to make her own decisions.

And I said to them, but are you asking her the right questions? She can confabulate till the cows come home. She'll tell you all kinds of stories, which if you don't know what the truth is, you will believe them.

And she sounds plausible, but they wouldn't have it. They just basically said, we think she's still got the capacity to make her own decisions.

And then the difficulty came that because I was always talking about money to my nana, she then thought I was stealing her money.

Oh, no.

Then she would go around and tell anybody who would listen that her granddaughter was stealing her money to go on round the world cruises. Oh, no. Yes.

And that was awful because, you know, people who didn't know me obviously didn't know what the truth was, but that was really, really difficult.

That would hurt. That would hurt.

Yeah.

Yeah.

And that unfortunately broke the relationship down between my nana and my father.

Because my father had always visited my nana, even though she was his mother-in-law and not his mother, he'd maintained a very close relationship to her all of her life. But that broke their relationship down because he was so angry.

Again, he didn't have any experience of dementia, we hadn't got the diagnosis.

She was saying these things to him, and he was so angry because he knew, obviously, the toll that all this was taking on me, and the fact that I was the only person looking out for her, and they stopped speaking, and for the last probably two, two and a half years of her life, they never spoke. And that was a real shame. But again, the paranoia was part of the dementia. Now I know this, you know, but at the time, I couldn't understand why she thought I was stealing her money.

Yeah.

I would just say how much that must have hurt you.

Yeah.

And like you said, you didn't know that it was part of the dementia, the paranoia, and the blame.

Yes. Obviously, I got the blame for everything, because I was the one looking after her.

So, you know, I can remember one day cancelling the hospital transport, because when you have to go to hospital here, and you get hospital transport, they drive around maybe four or five different people's houses in different areas and pick you up, and it takes forever. So, one day, I took the day off work, cancelled the hospital transport, so that I could drive my nana straight there and wait for the appointment to come straight back.

And we arrived at the hospital, and she went storming in at the top of her voice, saying to everybody, well, I hope we're not late, but my granddaughter insisted on cancelling the transport, so I've had to make my own way here.

And, you know, I was just stood there behind her, kind of shaking my head thinking, because she'd got, again, she didn't understand what was going on, and that I was doing it to try and make her life easier. She thought I was doing it to be awkward.

I've had to find my own way here, and my own way here was my granddaughter.

It was literally like that, yes.

Well, she sounds like she kept you on your toes.

Definitely. Definitely, yes.

How old was she when she passed away?

She was 89.

Okay.

So she had a long life, but as I say, she was 82 when she developed cancer. And when I look back, those last seven years, her quality of life was really poor.

And it sounds like the quality of your life was pretty poor, too, at that time.

It was very difficult. I felt so torn all the time because I felt like I wasn't doing anything well. So I felt like I wasn't giving my job what I needed to.

I wasn't giving my children what I needed to. I wasn't giving my husband and family life what I needed to. And I wasn't giving my nana what I needed to.

I felt pulled in so many different directions. And sometimes my husband would come back from work, and I would literally say to him, right, I've got to go now.

My nana's, the neighbours have said she's out wandering in the garden in a nightie at eight o'clock at night.

So I would literally get in the car and drive a 60 mile round trip to go and see her, but leaving the kids, waiting on my husband coming home so that he could then look after the children. And so it was hard on them, all of them as well.

It doesn't just affect the person who's doing the caring, does it? Or the caregiving?

It certainly doesn't.

It affects the whole family, you know.

And you weren't giving yourself what you needed either?

No, no, not at all.

And that's really tragic because it did, like you say, it did play on your own health. It had a huge effect and an impact. Yes.

Your story with your grandmother is amazing. I can just picture her when she walked into the hospital, though. Like, I could just picture my grandmother doing that.

It's like, I had to do this on my own.

Definitely.

She wrecked it for me.

Yes. It was, you know, it was, it was, there were times when it was, it was almost comical, but it was also so sad. And then there were times when I would catch the glimpses of, you know, the old nana and, and, you know, and it was, it was lovely.

I would take her out every week for a pub lunch, and she would sit and order, she always ordered ham and egg, ham, ham and fried egg and chips, which was always what she would order. And she would say, oh, I can't remember the last time I had this.

Then sometimes she would look at me and say, did I have this the last time I came? So she knew, on a certain level, she knew. Sometimes she would say to me, I'm losing my mind, aren't I?

And I said, no, no, you're not losing your mind. You've just got problems with your memory.

But I think she was so frightened of what was happening and that she desperately didn't want any medical professionals being involved because she was a generation removed from, or two generations removed from me.

So back when she was a young person, there was still in Lincoln, there was a sanatorium there where they put people who were mad in her eyes. And I think she was frightened that she would get put away. And I think that probably was a part of it too.

She didn't want to, although she would admit it quietly on occasion, she didn't want anybody crying at her. And I managed to get the nurse from the local GP practice round once to try and do a mini memory assessment on her.

And she was very amiable, my nana. She was a Scottish woman. She was really, really friendly.

She would talk to anybody. And so when the nurse went round, apparently, she started chatting to her. But as soon as she realized that the nurse was trying to test her memory, she told her to bug her off.

Yeah, yeah.

And so again, when I rang the GP, the GP said, she won't engage.

We can't do anything about it. If she won't engage, then we can't say whether or not she has dementia. And so it was this constant.

But she knew that there was a problem.

And that sanatorium memory, that had to be so frightening for her, and fearful, and scary, and no wonder she wanted to pretend as hard as she could that it wasn't happening.

Yes. Yeah, definitely. Yes, I feel sad sometimes because I feel, I think we always talk about care or guilt.

And I know you can't go back and you don't know what you don't know, but I wish I'd been able to give her the experience of the last 10 years that I've had.

You know, if I'd known so much more or I'd been able to access that support, I feel I would have been able to support her so much better. I felt like I was constantly flailing.

I felt like I was literally sliding from one crisis to the next, to the next, to the next, all the time.

And every time I thought I'd got a handle on something, something else would swoop in from the side, and I just had no idea how to deal with it all. And I know that I did the best I could with what I'd got at the time.

It still doesn't stop you wishing that things had been different, you know?

It's only natural to feel that way. And you were a firefighter. You were putting out fires all the time with your grandma.

That's what you had to do, and you were surviving as best you could. But now you're in a position to help caregivers thrive, not just survive.

Even though nobody had taught me it, and even though I hadn't got the diagnosis of dementia, I knew not to argue with my nana. I knew to go to the place that she was in as opposed to try and bring her into my world.

And I don't know how I knew that, but I can remember when she didn't know who I was anymore, and I didn't try to correct her.

I vividly remember one day we'd been to the pub, had lunch, then we'd gone to the co-op to get some shopping, which we always did, and I'd taken her back to where she was living, and I'd popped her into a chair, and I'd switched the kettle on, and I'd gone back out to my car to get the shopping, to bring it in. And when I took it into a room, she said to me, Oh, I've spent the most lovely afternoon with this lady. She'll be back in a minute.

We went, oh, I can't remember where we went, but she's ever so nice. You'll see her in a minute when she comes back in. And obviously, I knew that she was talking about me, but that she'd kind of lost the connection.

But I didn't say to her, that was me, you know, that was me. And, you know, when she kind of, she reached over the table once and looked at me and said, do I know you? And, you know, I could feel the lump in my throat and the tears in my eyes.

And I just said, I just said to her then, I'm Sarah. But I didn't say, don't you remember? I'm your granddaughter.

I'm this, I'm that. So even though nobody had taught me that, I knew somehow inherently not, or instinctively not to keep correcting her. Whereas, you know, I've seen so many people, and I still see people do it all the time.

Family members go, that's not Joe, that's so-and-so. And this is such-and-such. And, you know, I never felt the need to do that.

I just tried to be with her as much as I could where she was, because those times were precious, because obviously there were times when she was paranoid or angry or upset. And I didn't want the times when she was okay.

I just wanted them to be as nice as possible. And I thought, well, she's not going to remember. So what's the point in keep correcting her all the time and, you know, and telling her things that are then going to upset her even more.

And it's automatic for us to say, don't you remember or remember when?

And you instinctively, like you said, didn't do that. Like, that's, that's remarkable because I even catch myself now. And I've been doing this for several years.

You know, remember comes to my mind and it's like, no, you can't say that. You can not say that because they don't remember. No.

Yeah. That's a beautiful story though, that you were the really nice lady that took her out and she had a really nice time.

Exactly. And that's all I needed to be really, you know. That was just lovely.

Yeah.

You were bringing her joy in that moment, looking at your face now that brought you joy. So that's special. Yeah, definitely.

So Sarah, do you mind talking more about what you're doing now because you just finished your masters in dementia care studies or dementia studies?

Dementia studies.

So congratulations. Thank you.

Thank you. Yeah. So I was working for the last five years, I've been working for a charity that worked exclusively with family caregivers.

I had various roles there. I did a lot of work campaigning and influencing. I did training work, I ran services and peer support groups.

I left the charity at the end of July. Funding for charities, I don't know if in Canada, but in this country, funding for charities, especially smaller charities, is really difficult to come by.

And the charity was struggling with funding, and I just felt that it potentially was time to branch out and try different things. So I left and I've become self-employed doing dementia care consultancy and training.

So at the moment, I'm working, I'm doing some freelance work for a training company called Able Training. I do freelance dementia training for them. And I also run, I've only just started this, but I also run poetry sessions for people with dementia.

It's slightly an offshoot this, but ever since I was young, I've loved to write. And after my nana died, it's reignited my passion for writing. And I started writing inspirational poetry after she died.

And I've written lots and lots of, I've written articles as well. I write a blog. But the inspirational poetry was something that I really enjoyed.

And the very first poem I wrote after she died was called A Dementia Friend.

And I actually gave it to the local undertakers so that when people have passed away on the order of service for funerals, if somebody's had dementia, a lot of people choose it to put on the, you know, on the service.

And I don't, I sold one or two in the early days framed, but actually I, it's kind of my gift to the world because it's inspirational. And because it's about everything from hope to, to love, to death, to, you know, yeah.

So that's something I really enjoyed doing. So I went recently to a dementia hub, and I ran a poetry session there for the members. And I read my poems out and we talked about them.

And then I got everybody involved writing a little bit of their own poetry or their own like reminiscence. And then people read them out to the group, and we all talked about it. It was really great fun.

So that's something that I'm just starting off doing as well. Because I enjoy the training and facilitating because I really, I love imparting knowledge and wisdom to people. But I also like that creative side of me likes doing that.

I also, I speak publicly at conferences and on panels as well about dementia and about the importance of early diagnosis and about, especially about the caregiver and the family caregiver experience and how important it is to involve them.

And, you know, that's something that is really, that really matters to me, that, you know, that they're not overlooked. Because at the moment, I feel they still are to a large extent.

And you were overlooked yourself.

Yes. So there's kind of a lot of strings to, to my bow at the moment. But I think because I'm just starting out, I'm just kind of doing myself employed.

I'm just finding, you know, the things I really enjoy. And the other thing that I'm really, really interested in and focused on is young onset dementia. I used to run the peer support group for family caregivers of people with young onset dementia.

I ran that for nearly four and a half years. That really got me involved in that area. So now I sit on the Young Dementia UK Network Steering Group.

I'm one of the Steering Group members, and we're trying to basically ensure that people with young onset dementia get better service provision, that carers get better support.

Because again, it's an area that's hugely overlooked and underfunded and under-resourced, but has, because of the age of people affected, it has huge implications for them. So that's actually what I wrote my dissertation on for my masters.

It was a clinical literature review of the experiences of spousal caregivers of people with young onset dementia. Because obviously, I'd heard this firsthand and seen the struggles of these caregivers for over four years.

And that really set a fire in me thinking, these are people at my age or younger, that have had their whole lives affected by, generally, it's their partner, you know. So yeah, that's something that I still do.

I do that on a voluntary basis, and I sit on a couple of young dementia steering groups to help out.

You're busy. I can relate with the creative side though. And isn't writing poetry therapeutic and cathartic?

Yes, definitely.

And I think that's why I did it. I think literally that was why I did it. It was things, the dementia friend was kind of sparked by my nana having dementia.

And then I wrote one called When We Meet Again, because my nana was very religious. And it was about meeting somebody again in heaven. And it was written as if she was saying this.

It was all the things that I imagined that she would want to say to me after she'd died, you know, about don't sit and grieve and try and live, you know, a good life, and we'll meet again one day. But yes, it is really cathartic.

It's a way of getting out everything that's inside of you, you know, and just putting it out there. So I really, I really love doing that.

I think it's brilliant. I think it's a very clever outlet. And as a caregiver, caregivers need a way to vent.

And that's a very creative way to vent, like not just screaming into a pillow, which is also very helpful. But it's something that they can look back on later and say, oh, this is how I was feeling, and this is how I dealt with it.

And look at the beautiful literary work I did. And yeah, I think that's brilliant.

So Sarah, you've talked about your poetry, and I'm just going to suggest that with your permission, that the mini episode that follows this episode will be highlighting you reading one or two of your poems.

Yeah, sure.

Thank you. So I invite the listeners definitely to tune in to the mini that's going to follow next week and after. So thanks for being willing to do that.

Now let's get back to this podcast. So you're there for people, you're there to help caregivers, you're there with young onset dementia caregivers. What's the youngest person you've come across with young onset dementia diagnosis?

The youngest, I would say is 18.

No.

Yes.

I mean, obviously, I didn't, because I worked with the caregivers as opposed to the actual people with dementia. It was the mother of this boy that came to the young onset group. In fact, there were two.

There was a lady whose son was, well, I think he'd been diagnosed at 18, and he was now 20, and there was another lady and her son had been diagnosed slightly younger, and he was 18. But, you know, there is such a thing as childhood dementia.

It is quite rare, but these two mothers were saying that there is literally, because it is so rare, there's no where for them to get support, because people assume, obviously, A, people assume dementia is for older people, but they certainly don't

assume it's for children. And it was very, very difficult for them. You know, they were trying to care for other children, plus the child with dementia, yeah.

And there were a couple of people who came that were looking after, they were older people who were looking after adult children.

So there was one lady that was looking, well, I say she was looking after, her daughter had had to go into a care home because it was impossible for her to stay at home, but her daughter was 43 and in a care home, and she had young teenage children.

And this was her, you know, her mother, the grandmother of the children who was on the group because she was struggling.

She was becoming the mother of the teenagers.

Yes. So even though it's a lot rarer, you can have childhood dementias, but the majority of people, I would say, were probably in their early to mid fifties. But yes, there were people much younger.

Well, the only experience I've had is hearing that people with younger or still working spouses, they go to the doctor, and it's just not thought that this could be possible.

So they don't even consider dementia. And so they're left scrambling. That's the only experience I've had hearing that.

Yes, definitely.

And that's a big piece of work that the Young Dementia Network in this country are doing about.

They've produced leaflets, advice leaflets for GPs to kind of, to help GPs to actually bring it up in their consciousness, that it may be Young Onset Dementia, because that's exactly what we hear all the time.

That the average length of time to get a diagnosis of Young Onset Dementia is still around four years, because they tend to go through the stress, depression, anxiety, you know, understandably, it is still rarer than a lot of other things.

So, but all these things tend to be looked at first, and it can take months, if not years, of people being misdiagnosed and put on antidepressants, or, you know, wrong medications, thinking that it's something else when actually it's Young Onset Dementia. And then of course, the difficulty you've got is that there are still drug trials going on all the time, but if you're too far progressed in your dementia, you're then not suitable.

So I've spoken to caregivers who've been so upset because they feel like, had their loved one been diagnosed earlier, there may have been the possibility that they could have started on a drug trial that maybe would have slowed down the progression of the disease. And not just that, but they could have planned better when things were in the early stages.

Whereas if you don't know that somebody's got young onset dementia and you're thinking that they're living with depression or anxiety, then you're potentially thinking, well, this could, we could write this, you know, we could get the right decision

to get better. And this could get better.

Whereas when you know that you've got young onset dementia, you know that it's not getting better, but you've probably lost those valuable years of being able to go forward, plan, and make decisions about what your life is going to look like and what you want to happen. Do your advanced care planning and all those kind of things.

Advanced care planning. Very, very important.

Yes. And again, another thing. You see, my nana never got the diagnosis, so we never had the chance.

I knew she would want to be at home as long as possible. But, you know, we never got the chance to talk about any of the things that we would have talked about with advanced care planning.

You know, I just had to then make those decisions on her behalf as best as I could from what I knew of her.

Well, it sounds like you knew her wish as well, even though you hadn't had those conversations. And that's why those conversations are so important. But you did the best you could with the information you had, just like you said before.

Yes.

So I think we should start wrapping this up.

Do you have a website?

Not yet. No, I don't. So at the moment, I'm solely relying on my LinkedIn page, because I only started in July, literally doing the self-employed stuff.

Then my daughter came home for four weeks, and then we've been out to see her for two. So it's all been, you know, life's all got a bit crazy.

So that's on my to-do list next, to get the website set up, obviously, especially for the poetry side of things. So at the moment, I'm just relying on, I have a Twitter, I still call it Twitter. I have a Twitter or an X account.

I have my LinkedIn, which is where I do most of my, you know, I post my blogs on LinkedIn. I do have my blog page that again, I'm going to write, I've written about three articles on that so far.

But, you know, they're more on the, because I still feel so strongly on the campaigning and influencing side, I was actually messaging my MP this week about, about issues regarding dementia and, you know, what I felt needed to be done, because I don't feel the current government is doing anything, quite frankly, you know, and what I felt they should be doing. And so I'd written a blog all about, you know, the importance of dementia training and support and putting money into it. So, yeah.

So this will all be on your website when you do create a website. And by all means, please let me know when you have that website, so we can put that in the show notes so that there's a link directly to your website.

So your LinkedIn is under your name, Sarah Merriman.

Yes.

And Twitter is under?

And then it's S-A-Z-Z-A, 773. So it's at Sazza773. Sazza was my nickname from my best friend when we were children.

She always used to call me Sazza. So that's kind of stuck. So it was just at Sazza773 is my X.

But yes, I'm hoping to get the website set up within the next, well, certainly within the next month, just to be able to get stuff on there.

Well, actually, yeah, this podcast won't air until it's up then. So how can folks reach you?

The easiest way is via my LinkedIn profile or my email. I have my dementia care consultancy has an email address that will go on the website. So I have that email address already set up that I'm using.

And your email address is?

It's all one word.

So it's dementiacareconsultancyatgmail.com.

Perfect. Any last words that you'd like to add before we completely conclude here?

Any words, last words, words of wisdom? I think the one thing I would like to say to anybody listening, who is currently caregiving, is that you are not alone. I think it can be very, it's a very, very lonely place.

You can feel like nobody understands, nobody is there for you, even if they're trying to be. But I feel like if you look hard enough and you look in the right places, there is support out there.

There are people who will hold you and walk alongside you. It's just a case of finding those people. And to me, I think that is one of the most important things.

If you find somebody that you can offload to, somebody that will just listen to you and support you, that is huge. And yeah.

Thank you. Thank you so much. And thank you for doing this today.

It's been great.

I really enjoyed it.

It has been lovely. Thanks, Sarah. It's no wonder that Sarah felt the need to reboot after seven years of full-on caregiving for her grandma and being pulled in so many directions as a sandwich generation caregiver.

She was overcome by the frustration of being told time and again that her grandmother still had capacity to make her own decisions. Only Sarah knew otherwise and could see what was really happening.

Yet her grandmother's resolve and denial that there was anything wrong with her proved to be a major roadblock for getting a diagnosis and much needed help, which compounded the stress for Sarah.

Like many others, Sarah had not considered herself a caregiver, believing that carers are those in paid positions, and she was just doing what any dutiful granddaughter would do.

Sadly, that prevented her from accessing information, support, and resources when she needed them most. After her grandmother's death, Sarah gradually found her footing again, and switched her focus to help others on a grander scale.

She earned her master's degree in dementia studies, and now uses her degree together with her lived experience as a caregiver, to educate caregivers, to raise awareness, and to campaign for folks who are living with dementia and young onset dementia.

But she doesn't lose sight of what helped her along her journey. Like the best interest meeting, the carer's assessment tool, even writing poetry as a creative outlet for all those pent-up emotions.

Knowing what can help, she now effectively signposts for others so that they can find the support and resources they so desperately need.

If you've been coming up against roadblocks and find yourself in need of a signpost or two, directing you to supports in your caregiving journey, I invite you to tap into AlongsideCaregiverConsulting.ca or AlongsideCaregiverConsulting's Facebook page or Instagram account, or to contact Sarah Merriman through her LinkedIn account. Thank you for tuning in today, and to Sarah Merriman, thank you for sharing your wisdom and insights along with your caregiving journey.

If you enjoyed today's episode, tell your friends and other caregivers about it. And if you don't want to miss future episodes, be sure to subscribe to the Island Treasures Podcasts. See you next episode!