Carers Conversations - Linda Barnes - From wife to carer

Welcome to the first episode in a series of "Carers Conversations", where we are Reimagining Golf Clubs as Healthy Ageing Hubs.

In this episode I sit down for a conversation with Linda Barnes, wife and carer to one of our Golf in Society participants. Linda is also the author of an incredible daily blog, Telling Tales, where she gives society an insight into her world caring for her husband who is living with young onset Alzheimer's disease. 

Listen in as we gain a small insight into Linda & Ken's world, from Linda herself. Followed by a chat about Co-designing a better future for families living with dementia.

"I wanted to conduct these conversations to get a true insight into life at the coalface of dementia and to show how we're incorporating carers voices into reimagining golf clubs as health hubs" - Anthony Blackburn

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Chapters

• 2:59 Navigating the referral pathway for Dementia
• 14:42 Co designing a better future for families living with dementia
• 24:18 Tips and advice for society on better support for families living with dementia

Transcript

0:00

Good morning. It’s Anthony Blackburn from Golf in Society. As you know, I am the founder of a social enterprise with a mission to transform the lives of our aging population by introducing them to the health and well-being benefits of golf clubs. And over the years, I have had the privilege of meeting some amazing people in my social enterprise. And some of the most inspirational individuals I have met, have been the carers, that we support. Because, a lot of people see the golfers out and about on the golf course.

And they see that as: 0:30

“How Golf in Society transforms lives?” But what they don’t often see is what goes on behind the scenes in the clubhouses, and in conversations, and great chats, with the most amazing unsung heroes of society. And that’s your unpaid carers.

And I am privileged this morning to be here in conversation with Linda Barnes, who’s the author of a blog called: 0:47

“Telling Tales". And it’s titled from wife to carer. And if ever you want an insight into what it’s life, as a wife, that eventually unfortunate has taken the role of being a carer, then it’s the most wonderful, wonderful account of what it’s like every day. And definitely worth signing up to that blog. So without further ado, Linda, welcome. Hi, Anthony. Good morning. As you know, we have embarked on this exciting project at the minute, which is basically to reimagine golf clubs, as outpatient clinics. So basically, it’s a matter of everything we have learned so far together, in terms of how we inspire people to enjoy activity, give them a great timeout, and also create that space where carers can feel comfortable, better supported, more resilient, that’s sort of been the inspiration behind it. And this project is going to give us the chance to design a service around you, your partner, to make sure that we give you an opportunity to enjoy life to the best you can, whilst living with a diagnosis. In this instance, Dementia. But most importantly, as well as getting carers to build up their personal well-being, their mental and physical health, and also feeling more resilient and better supported that, as they go along their journey with the diagnosis, that someone there for them. There’s a conversation that can happen, therefore, they don’t feel alone. So the starting point, really, for me is to say very openly to, how have you found navigating the, sort of, referral pathway, since you would, as a family diagnosed with Dementia, and also the health system generally? How have you found that? Well, Ken was diagnosed with young-onset Alzheimer’s disease seven years ago now. And I have a history of being a nurse for thirty years. And with a diagnosis like that, I really thought that the cavalry would arrive. And unfortunately, that wasn’t the case. And it wasn’t the case for anybody that I knew in as similar situation at that time. Ken’s diagnosis is a terminal diagnosis. He didn’t get any support from anywhere really, in the beginning. We were sent to the Memory clinic, and had to really fight to actually be seen to have anybody and be believed. I think that’s the word I want to talk about. Ken started to do odd things. He would be a builder all his life, but he forgot how to measure. He forgot how to tell the time. Things that a normal 52-year-old shouldn’t be forgetting. His short term memory was fine. He knew who the Queen was. He knew all about general situations. But there were these odd factors, that I thought this is a bit strange. Ken went to see the GP. Because I was worried and said you know you really need to go and discuss this with someone. The GP did the Dementia checks, asked him some questions. He got 99% of them right. But the one that it didn’t get right was the one to do with numbers. You have to take seven away from hundred and continue. He can’t take seven away from hundred, at all.

Anyway, the GP said: 4:38

“It’s just stress and anxiety. Don’t worry about it. You are fine and sent him back.” So Ken was given a very much a false understanding of the situation really. He thought that I was the one making a fuss. Okay, yeah. That’s what he felt. So, six months on, things were getting worse, he was making silly mistakes in the office that he would never have done. And the bookkeeper kept covering up for him, but he was doing things that weren’t quite right. And he had a very strong team around him, and then Ken wasn’t acting as he should do. So we went, we went on holiday, we went on a cruise. And Ken couldn’t remember the room number. He couldn’t remember his phone number. Somebody asked how old he was. He couldn’t remember how old he was. I thought this is very odd.

And we had a conversation and said: 5:36

“We are going back to the GP and carrying with you.” Which I did. I was quite forthright in that consultation, I said, Ken’s got a calculator. He’s forgotten how to deal with numbers. We had a very inexperienced GP, who really didn’t know what to do with us, but eventually agreed that we needed to refer to the memory clinic. At that time, I thought Ken has either got a diagnosis of Dementia, or he’s got Brain Tumor. Right. That’s what I thought. So we went to the memory clinic and the Memory Clinic, where it was a service setup for old people. Ken was 52. I can remember sitting in that waiting area, looking around me thinking this is not the right place Ken, to be. It’s not. He shouldn’t be in an old services situation. When we saw the nurse who did some initial psychometric tests. And again, Ken was going very high, until he got the mathematical bits. And we really felt like, we were wasting their time. Yes. We really did. And Ken went for another test, and I was excluded. So I am not quite sure what went on with that one. But he obviously didn’t perform terribly well, because the outcome was that they would speak to the consultant and see whether any further action needed to be taken. We waited for about three weeks, and heard nothing. And then we were invited back again, for some more psychometric tests. And, again, it was the same area that Ken was failing on. We got to see a consultant, eventually. And because of my existence, more than anything else, Ken was sent for a CT scan. The CT scan showed the normal size brain, but the consultant had taken on board what I would said, and so decided that cannot have a PET scan. So we waited a few weeks for that. Quite a few weeks. Went to Leeds for the PET scan. And that should that Ken had damage to the left parietal lobe of the brain, which is responsible for numeracy. Right. There was a long, long wait before we actually got that information. There were problems at the Memory Clinic at that time, there was some restructuring going on with the Health Authority. There was nobody that I kept filling in every week to try and get some sort of information and, was constantly told that we will get back in touch with you. Eventually, we saw the consultant who basically just read out the radiographers report, and said that it shows the likelihood of outsiders disease. And with the information that he got, he felt that that was enough to make a diagnosis. Did we want to start on tablets? And that was about it.

Ken just said: 9:01

“Yes, of course we want to start medication.” The medication doesn’t stop the disease process, but it can slow it down.

And sir, Ken start it on some [unclear 9: 9:14

16] tablets. We were under their wings, until he was titrated up to the doors. And then after that, we were told that you will be…“This is just a diagnostic service. You will be under the care of the GP.” So I rang the GP and we made an appointment to go and see him. By this time Ken was really depressed, very low in mood. He just got this dreadful diagnosis, but nobody was supporting him at all. I was desperately trying to find services to access. I found it very difficult. I couldn’t do it. It was seemed to be nothing and I just thought the GP man be able to help us. So that, we went along to the GP, he really didn’t know, have a clue what to do with us started to add some antidepressants. And said he would look into it. We went back again to see him. And he just basically said, this Dementia forward that we can refer you to. But there’s no specific areas for which for young onset dementia in this area, so dementia forward is a charity. And I ran with them. Again, there was very little provision at that time for young onset. And Ken was still quite high functioning, and he needed somebody to explain what was going to be happening. And I think we have said before, we didn’t want the full chapter in verse, we just wanted the next chapter, please. Just to give us some hope. Yeah. So, it was not an easy process. And I was really very disappointed that, there wasn’t nothing there to support us. I thought that there might be some cognitive stimulation classes, I thought there might be something that would help us to do the best that we could with the diagnosis that we would got. And I think it’s quite interesting that you say that in terms of that frustration that there wasn’t as much out there as you possibly thought there was. No. This is someone that’s obviously worked within the NHS system itself. So I think if you can imagine what it’s like for someone who’s actually worked outside of that, and hasn’t been able to have that understanding of how to navigate it. Well, I was a practice nurse for fifteen years before Ken got his diagnosis. While I was still working at the time, but I didn’t have any, I can’t remember having any training or, any input about Dementia, particularly. I don’t remember the doing, we used to do Well Man Checks. We used to do heart disease checks, diabetes checks, I don’t remember anything cognitive at all. And it was only because I was a little bit more aware of Dementia as a disease, that I pushed to get Ken, anything at all, really. Anyway, the journey went on, and the disease deteriorates over time. And during that time, I have made it mission, Ken and I, to improve understanding of young-onset dementia. So, instead of us benefiting from the services, we found that we were informing services, about young-onset dementia. You would look at Ken at that time, he was still, he could still verbalize, he was tall, and strong, and good looking chap. People really struggled to believe that there was anything wrong with him. If I got another person telling me they forget the keys, or they forget people’s name. Honestly, I would be a millionaire if everybody gives me a penny for each time, I was told. And that is a real, it’s a disease. It’s a physical disease, and yet people, because they can’t see it. Believe it, it’s one of those invisible illnesses until it gets to the later stage. And then it’s more obvious. That is a fantastic start to our conversation. Thank you for that. Thank you. So Linda, thank you, that’s been a great start to the conversation. Now we are going to move on to what I think, is quite an exciting bit. We have got a blank canvas in front of us. We have got a chance with this current pilot project, to reimagine and redesign a twelve-week program of support for you, in your role as a human being, as a wife, and as a carer. And also for that of your husband, and for it to happen simultaneously at the most amazing golf clubs near you. With all the beautiful green space, dollar built infrastructure, with great people around you. And we have got a chance now to take that beautiful infrastructure and fill it with great services that support you to live that happy, healthy life, you and your partner deserve. So with that blank canvas in front of you? Especially, from your perspective in your role? What were the first things that you would put on that piece of blank canvas? I think one of the things that carers struggle with, to start with is, loss of identity. I think that’s massive. I think certainly, what their plans were? Where they wanted to go in the future? Suddenly evaporate. Very often carers have to give up their profession, or their job. Because caring for someone is a full time job in itself. And often, people can’t afford the care, their salary doesn’t cover the cost of the care. So that’s why many people stop their job. Which has a massive effect on well-being I think. I think that Anthony has got a brilliant idea. And I wish we had that opportunity, earlier. If we had known that we could be, could go somewhere, where people understood, where people were supportive, where we didn’t feel on our own, where people were sharing experiences and learning from each other. I think that is one of the key factors for carers. And being in a lovely surrounding instead of a dingy room somewhere, is a massive difference. Makes a massive difference. Knowing that, carers are leaving their charges in safe hands, is another huge consideration. Knowing that, that it’s a shared but different experience, so you could go along to a golf club, you can have a nice time and know that your loved ones are having an equally nice time but doing different things. I think, that would be wonderful. Every carer is different, every situation is different, and everybody will have different needs. But I think being together, having the opportunity to talk to each other, share nice experiences, maybe just a cup of tea, but maybe something a bit more active, or something that would improve well-being, would be fabulous. Even just quiet spaces, just somewhere where you can just be quiet, and not have all the… Just forget about Dementia for a little while would be massive. And I think it’s quite interesting. You mentioned that Linda,

because I have noticed you here at [unclear 18: 18:03

05] park that you have just taken, Hetty your dog. And just taken Hetty for a walk around the grounds. And, just found that opportunity to enjoy that beautiful green space with the family pets, which I know you find very therapeutic. Absolutely. And I think Anthony’s vision is one where, it’s inclusive. So there’s going to be things that will happen for everybody, whatever stage of the Dementia. So some things that are suitable some people may not be for others. But it will be tailored for each individual person, so that they get the best out of it. I think if we can go somewhere and both come back happy. I think we can come up with the rest of the day. Yeah. With what you know now. Yeah. If you would know it back, then. If these types of services have been available when you were doing that initial desktop research in terms of what was available, where sport was mentioned, where these spaces, where these sort of wellbeing events for carers, if that had all been sort of mentioned in some way or form as part of your initial information pack, do you think that’s something that you would have potentially reached out and interested in? I would have grabbed it with both hands very time. Absolutely. I think Ken is. He’s a man’s man. He doesn’t like singing about the White Cliffs of Dover. He doesn’t read or write so he can’t do. And hate crafting. Sport has been at least something because of the muscle memory he can still actively enjoy. He’s not going to ever be the best golfer, but that doesn’t matter. He is physically involved and experience. So the other thing is, I think it’s not pussyfooting around the situation. The support isn’t in your face, that Ken is just guided, he doesn’t really realize that he’s being guided. It’s not like a carer and being cared for situation. It’s experience. I think the support workers get just as much fun out of it as the people that have Dementia. True. Truly agree. And I think it’s quite fascinating for me, because when we met recently over a coffee, I called you and your fellow carers, the most amazing project managers, I have ever known in my life. Yes. Because to manage the complexity of life, for yourself, for your family, and for your loved one with a diagnosis, is nothing more than inspiration when I see it being done. And I think sometimes, what I have also realized, is when I give a compliment, a lot of carers can’t take the compliment. Whether that’s because of they are so high functioning and highly focused, that taking that moment to actually think about their own emotions, sometimes can be a little bit, I don’t know, but often I have made many ladies cry, in their role as a carer. Not meaning to, but just because we have given them kind word or compliment. Yes, that’s very true. Because carers don’t get a lot of recognition. And I think that perhaps, in this new experience, they probably will be valued, which is massive, because many people do feel, like I said, at the very start, that they don’t matter. And people think they will just get on with it, and don’t realize the physical and emotional problems that are attached to seeing your loved one, gradually, very slowly becoming somebody else. Right. So this has been a great conversation so far. And moving on to your opportunity to share your tips and advice and your voice really, because as you know, whenever I speak to the families we support, I really do like, at every opportunity, to give them the opportunity to share their voice and have their voice heard whenever I get the opportunity to share that with an audience. And today, really, with everything we have discussed this morning from the challenges of living with Dementia, in terms of through to your first ideas, on what the best type of support program would look like, within our new venture. I would now like to give you the opportunity just to, maybe, highlight a few tips and advice that you would give to people out there working in the health and social care space. And also possibly, you know, the general wider community about, how they can make that whole life with a diagnosis better for you, your partner and families like that? Yes, thank you Anthony. And I would say, I think it’s really important that, the person with dementia is involved in the conversations. We have had recent appointments, where Ken has been completely ignored. Which is not the… We shouldn’t be doing that at all. Although I try and draw Ken in, and he has problems. He’s got primary progressive aphasia, so he doesn’t speak. He has some understanding of what’s being said. And he knows that people are talking about him. So really questions, although the carer is likely to answer should be addressed to Ken. More the person with dementia, if at all possible. And I think it’s very frustrating. I would hate to be in a situation. If I was sat and people were talking about me and I wasn’t being involved. So that for health professionals on all levels, I think that is something that needs to be addressed. Not by everybody. But by some people who talk above their understanding levels. Somebody with dementia. And, I think it’s a mark of respect more than anything else. I spoke to medical students last week on a Zoom call. I was involved to try and help them understand a little bit more about what it’s like living with Dementia in the family. And how it affects individuals within that family group. And I think more care needs to be taken to look after not just the person with dementia, but the other members of the family as well. I think there is very little for carers. There is even less for family members. And certainly, my husband’s Dementia has affected his son and his daughter equally as much as me. Yeah. And I think that they are very much forgotten. I think if somebody spent, for instance, with young Dementia, if somebody comes to you with memory problems, or can’t remember how to tell the time, think, a little bit deeper than anxiety and depression. Think what is it? This is quite unusual. And I think, I feel very strongly that certainly, when Ken was diagnosed, there is very little understanding of Dementia in general, within the health professional sector. Absolutely. Yeah. I think it’s, people understand more now, seven years on, but I still think it needs to be very much a part of training for every type of health professional, from occupational therapist, or physiotherapist, to practice nurses to GPS. Because the signs and symptoms aren’t different for everybody. And I know that makes things more complicated, but it should trigger some thought that perhaps, this person has got a form of Dementia, rather than just stressed. Can I just, another question as well, in terms of, obviously, there’s a number of different hospital or GP appointments that you have to attend for yourself. And also for Ken, do you find that it’s, I really want to understand how Ken finds it in those environments where he’s going to hospital environments to GP, so is he comfortable in those environments? Or does he find it stressful or anxious? How does he feel? I think, you are absolutely right. I think even parking in your situations can be stressed before you even get into the hospital or wherever it is that you go. I think that’s the big thing. And I think certainly with the masks and everything else that has been an added complication, it’s been very difficult. That one consultant insisted Ken wore a mask, his glasses steamed up, he was really very, very uncomfortable. I think if it was a more relaxed situation, where you could see outside, and not get lost down dark corridors. I think that could be a real benefit. Certainly, it would help the carers. Because stress and anxiety is difficult to deal with somebody with Dementia. And it’s so easy to get lost in a hospital. From my experience, it’s…

As experienced [unclear 28: 28:56

56] hospital. Yes, exactly. It’s very difficult. We went for an appointment a few weeks ago, and all the signage, it’s changed since the pandemic in our local hospital. I was completely lost. I was sent by two different people in the wrong direction. By the time we got to the appointment, I was completely stressed. Ken was picking up on that stress. It wasn’t a good experience at all. I think if you could walk into somewhere that’s friendly, and homely, and comfortable, I think that would be a massive improvement. Well, that is a fantastic tip to end on. Linda, it’s been an absolute pleasure. And thank you for taking your time. Luckily we have got the sun shining here at reading part today. And all this is happening at a golf club. And it just shows that, everything we do in Golf in Society, we put golf clubs at the heart of the local community. Whether it be having conversations here, whether it be golfing outside with how people who are enjoying their sport fits with a diagnosis, or whether it be supporting carers, it all happens at local golf clubs. And amazing people like Linda are the reason that my desire burns brighter than ever to make a difference to these amazing ladies and unsung heroes of society, who without them, we would be lost. So Linda, thank you very much. Thank you for having such inspirational ideas. We will keep it going. Keep it going. Take care.