Episode 35 - Christmas - Caring for or coping with the loss of a loved one

We know that Christmas can be a difficult time for people who are caring for a loved one with a diagnosis, whether this is your first Christmas since the diagnosis or you are worried this may be your last. We also know that for some of you this may be a time of remembering a loved one you have lost.

In this episode, we talk about some of the challenges. We share experiences and ideas on how to navigate through the holiday period.

You can contact our support team by calling 0808 800 0004 or emailing support@thebraintumourcharity.org.

We also have some information on our website which you can find here

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Transcript

Sarah: 0:38

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Welcome to the podcast. I'm joined by Andy, Anna and Chandos to talk about the holiday season and some of the challenges and ways to manage and when you've been affected by somebody else's diagnosis. So welcome to the podcast, just in case people haven't listened to us before. We'll do a quick round of introductions so that you will get to know who we are we are all the host of the podcast. I'm Sarah and I work at brain tumour charity. And I'm gonna hand over to you, Andy.

Andy: 1:25

Hello, I'm Andy. I'm a user, as they say, so I'm, I'm in my 50s sort of diagnosed about five years ago with a large benign meningioma, which was removed through surgery, and I had some regrowth this year, which had been treated by stereotactic radiosurgery or Gamma Knife.

Chandos: 1:44

I'm Chandos And I'm a previous young ambassador for the brain tumour charity, and I volunteer, but I had a benign brain tumour when I was in my childhood. So I had a Pilocytic astrocytoma, or Timmy for short. And it's left me wwith left sided weakness down my left side that means that I struggled to mobility things and daily tasks like that. But I've also got a mental health diagnosis of OCD as well,

Anna: 2:04

So I'm Anna, I'm one of the current young ambassadors for the brain tumour charity, which is also how I got into doing these podcasts with everybody else. So I lost my dad to brain tumour back in 2011, when I was 13. So yeah, that's something that I wanted to do to keep his memory kind of alive. And something that I'll be happy to talk about today.

Sarah: 2:23

One of the reasons we're doing this episode is because we know the holiday season, it can be really difficult, it can be difficult, for various reasons, when you've got or had a loved one with a diagnosis, it can be really difficult to manage the expectations of managing the holiday period whilst also managing the symptoms, side effects the caring responsibilities of somebody who is living with a diagnosis and how you do that and still kind of take care of everybody's needs. One of the things that people struggle with, is balancing this sort of needs. And I know Anna, you were only 13. So your mom presumably had to kind of juggle having children in the house, and your dad obviously having a brain tumour.

Anna: 3:10

Yeah, I mean, it was just me, I'm an only child pride and joy. But I think even just having one child and then dealing with somebody else close to you. And with that being the other parent, obviously having an illness must have been looking back such as such a tough thing to go through. Absolutely. I'm constantly in awe of my mum and and how she handled so yeah, definitely. But yeah, around that kind of time. So we lost my dad actually in October. So that first Christmas came around really quickly. And I think it was very much kind of an experience where we pretended like everything not pretended that everything was normal. It obviously very clearly wasn't but kind of tried to carry on with as much normality and traditions as we possibly could. So I didn't live in the same house, my dad, so I didn't usually see him on Christmas Day. I used to see him on Boxing Day. So that actual first Christmas Day, I think we tried to keep it as normal as it would have been anyway, because he wouldn't have been there anyway. But obviously it was kind of clouded by what had happened. And just that feeling that there was still somebody missing, whether it been that day or just I would have still spoken to him and things on the morning. So it was obviously very different. So I think as much as it is sometimes useful to try and act like everything's fine. I think it's really important to also acknowledge that it's not and it probably never will be again and lose them on to a brain tumour.

Sarah: 4:31

Chandos. And, Andy, you've talked about some of the difficulties that you have actually managing the day. How do your loved ones manage that with you on a Christmas day? Do they do things differently than they would have done previously?

Andy: 4:46

I think for me, it varies. The first Christmas I had. When I was diagnosed I was very ill fairly ill Over Christmas we didn't know as a brain tumour. Then I was diagnosed, just after Chris just first week in January. So when the first Christmas came like afterwards, there was a sense of relief with my wife and my family who were fantastic that I was still here and still able to be in a position to enjoy Christmas. But they also I think they felt very protective towards me. So they tried to have a normal Christmas. My kids would have been sort of teenagers so that they weren't too young, but they tried to have a normal Christmas as possible, but I do think it affected them soon that first because they they were trying to fend people off because they knew too many people would get me over overstressed and overtired. And I'm not going to be rude, but I can't be rude to people, but you try not to be rude to people. So they were trying to protect me, and have a good Christmas at the same time. And I think that was a real, that was probably the biggest challenge for them. Since then, I think that we've all come to terms and as carers, I think you when you can come to terms of the fact that your loved one is different. Now after brain tumour diagnosis, and whatever the diagnosis, they haven't the symptoms, they will be different. So it's the carers, acknowledging that and then trying to have as good a Christmas as you can, knowing that the person that you're, you've loved, for my case, you know, for many, many years is going to be different. And I think that's probably the biggest challenge. And, and, and you picked up on it, that that's where having consistency and trying to do the same things as you did that tradition really helps. Because it helps the carers and their family looking after you, as well as helping the person living with it. So still have your presence in the morning, still have dinner at the same time, still invite people around, but just be aware that person with the affected won't be as possible as receptive and won't have the same stamina certainly as they had before and and maybe behave as well. So people have behavioural things. So my family also know that I can sometimes say things that are inappropriate, because my brain demands filters gone. And even though that gives me a good excuse, especially at Christmas, they kind of have to pre prepare people that if they come in and you know, chat to me on the phone or talking about Christmas, that if I do say something that seems to be inappropriate, it's nothing personal. That's just how I am so we can still have a good time and the characters will have a good time. But it's it's trying not to let the change in the person you're loving and caring for affect your Christmas too much.

Anna: 7:33

Yeah, definitely. I feel like I was very young. When my dad first got diagnosed, he first got diagnosed when I think I was around nine. And then he was in the clear for about five years until he had regrowth. But it was during that time I was I was young, but I would think I was still old enough to realise that my dad was never quite the same after his first operation. He was, as you said, Andy quite fatigued, and things like that. So I think even though I was such such a small child, I was still conscious of not running rings around him on Christmas and getting a bit overly excited. But like you say, I think I had it in my brain that I didn't want to tie him out. But then at the same time, I was still very much like, No, this is my Christmas slash Boxing Day. I do want to spend time with you. And let's have fun and things like that. So I think it's about striking that balance, obviously be really respectful to the person who you love very much, who's obviously struggling. But also don't, don't put everything to one side because it is very much your Christmas as well.

Sarah: 8:32

And I think it's important to know that you can say no, because I think it's the time when people do want to visit people do want to do things and trying to juggle and be all things and to pretend that your life is normal. When you're you've got care and responsibilities and you're exhausted because you're doing whatever you need to do at home to care for your loved one, that it's actually okay to say, No, I can't do this, or I can't do that. Because I think sometimes people try to be super human and try to do everything. Because that fear of letting people down. I think carers naturally tried to do too much. And that fear of letting people down means that they take on too much and they burn out and they're exhausted at a time when they're already probably feeling exhausted with just being carers and just the day to day life of being a carer.

Anna: 9:22

Yeah,

Andy: 9:23

just for me to the term I was trying to remember as someone with his who cares for the carer? Yeah, it's something my dad said to me many years ago, who cares for the carers. So if someone's ill, people tend to focus on the person who's ill, they very rarely focused on the person who's caring for them. But the person caring from is just as important if not more so than the person being able to. So if you're carrying on your own, try and take a step back and go out, I need to look after myself. I need to be fit healthy, engaged. And that means I can take time out, I can do things I want to do as well. And if there's a family, it's looking after each other as well. So don't put all your attention on the person who's been affected or ill almost cared just as much about the people, surrounding yourself as well and make, make sure you're looking after yourself.

Sarah: 10:14

Yeah, cuz it's okay. If you're in a household where you've always been the place where everybody comes to Christmas and you're the one that cooks like for 10 people that actually it's okay to say, actually, we're not doing that this year. It's either just gonna be a quiet one with just a few of us, or we'll come over to you, you know, you don't have to be the person where they all come with, that's always been the tradition. It's a time where you can also set new traditions and say, Actually, this year, we won't be hosting for everybody not cooking the turkey for and feeding the 5000 will come to yours or will go out instead, there are lots of restaurants and places that now do Christmas Day, that actually there are other ways of doing it, rather than feeling that you've got to carry the burden all on your own.

Andy: 11:01

Yeah, I think so I've talked to most but if, if, for someone like myself, you get to a point soon on Christmas Day where you need to take yourself away for a while, sometimes I'll go to bed early, as well, because I've just reached the end of my mental energy, I'm getting fatigued. If you're caring for someone, and that happens, don't think after that's the end of the day, I've got to look after them. That's the time to crack the beers open and get on and have a good time. Because the person who's tired and drained who's living with a brain tumour, let them go up to their room, put their noise cancelling headphones on take themselves away, then you can still have a good time. And don't feel guilty about having a good time, you're still caring for that person, by giving them the space, they need to have a good time. So like I said, that means that you have the Christmas two thirds of the day with the person you're looking after. But the last third you get you get the beers and the party games and, and whatever it is trivial pursuits, or whatever you're playing, that's actually a good thing. So don't think you can't enjoy yourself just because a person who might be the centre of attention isn't there. Actually, that's the time to really sort of let your hair down.

Sarah: 12:04

And I also think that it's a really difficult thing to do. But it's staying in the moment, and not trying to focus too far in the future. I think that it can be quite scary if you've got someone with a diagnosis to be thinking. Everything seems like it's heightened, like is this going to be the last Christmas. And I think it's really important to try and stay in the moment and not think about that just enjoy the day for what it is. Just try to park that kind of what's gonna happen in a month time, six months time we use time, don't let that overtake the actual day. Overtake what the time you do have to just try and stay in the moment in the day and enjoy it for what it is.

Anna: 12:49

Yeah, absolutely. I kind of think that staying in the moment and kind of just appreciating what you have continues on even after you might lose somebody to a brain tumour as well. I think that Christmases nowadays, I kind of take moments and take time out in a different way to how you would Andy just to kind of reflect and almost remember the person that was once there and just kind of almost not dwell on it too much about what the day would have looked like if they were still around. But just to kind of remember them and kind of stay in that moment and appreciate how they would have enjoyed the day as well. And I think it can be quite nice to to experience it that way as well. So it's really important even say once you've lost somebody to a brain tumour or to in any to anything, I think just taking that time out as well to yourself and not feeling that pressure, like you say of Christmas day and having to be around everyone and constantly be jolly and playing games and drinking and laughing there's plenty of time for that. And you can do all of that. But take those moments to really reflect and remember those loved ones and like I think each person in your family who's experienced that loss will have experience in a different way and I think it's important Yes, it's important for all of you to spend time together and bond together and remember things together but also to take moments to yourself to remember them in your own little ways I think on Christmas and any time of year but especially at times like Christmas I think that's really important.

Sarah: 14:15

Yeah, I agree. I know people that do do sort of things like some some people that just light a candle no other people that write a letter like you know of just like and they read it out they still keeping their loved one feeling like their love wants to include it in their life and almost a telling them this happened and this happened. So they can feel that connection. So I think is however, sometimes people start those traditions off before the person's gone because it's it's something that they can then continue. Like Andy mentioned before about thinking about traditions from his childhood, sometimes I think it's nice, whether it whoever it is has passed away. It's nice to sort of do something that you because sometimes people think is too painful because we used to do I used to do this with my dad or with my mom with my siblings but sometimes they think it is quite nice because it's a way of keeping them you know, doing something that you always did together bringing that happy memory even if it initially it might feel sad. I think it can bring comfort that this is what I used to do with whoever

Anna: 15:20

the and I think Christmas is such a time where that there are so many traditions and things that you would really latch on to I think there's there's always He's going to be songs and films and things like that, that remind you of somebody if you've lost them, but I think at Christmas especially there's, there's so many Christmas, Christmas films. So I think there's always going to be something that that reminds you of brings it back. But you don't necessarily always have to dwell on it. Or like you say, Don't have your friends and family don't have to be too worried about being like, oh, no, we can't play that song. Because you'll get upset or things like that. I think it is nice to embrace them and keep them going. And just Yeah, reflecting on it, rather than rather than avoiding things. Obviously, if that's how you choose to grieve initially, and it is too painful, then don't force yourself through anything ever. But I do think it can be a nice way to remember people sometimes,

Andy: 16:10

because I lost both my parents in the last few years not to brain tumours to various things in the first couple of Christmases. Yeah, it was quite raw, because you didn't get the phone call. You can get the chat you didn't get to see them. But last Christmas isn't the first time where you personally come to terms. With their passing. We actually got the some of the DVDs out and some of the old cars, we put them on DVD of Christmases gone past. Yeah, my mum and dad was still bright and alert and you know, didn't have dementia and all those sorts of things. And it was actually really uplifting looking. We did wonders if it should be or shouldn't we, because it might have made us feel really bad. But I think because enough time had gone, we felt really just flooding all these memories that came back. That made us feel that sort of warm and tingly. If that's not done. Just feeling like they're almost with us. So we it's timing thing, and everyone deals with grief differently. And that but for us, for me and for us as a family, looking at those old DVDs and videos really helped us then enjoy Christmas because they almost it almost felt like they were with us. You know what I mean? Because we we had all those memories of what they used to do and how they used to do it. And that that for us. And I think we'll be doing the same this year. Probably in the last week before Christmas. Again, we'll get the old, I say DVDs are showing my age, to whatever it is camera film these days or whatever's on your phone, sorry, I just have a look at them and just remind ourselves of all those happy memories because they are happy. And I wouldn't want those memories to be locked away that I can't ever get to.

Anna: 17:49

Yeah, my mom and I did something really similar. On my dad's anniversary. In October just gone, we found some old photos that we'd never watched before. And they were of Christmas Day, some of the some of the clips. And I was tiny in them. So only been about two to three. But it is it was nice just to kind of hear that voice again and just watch different traditions. And it almost reminds you of how Christmases do change anyway. And as painful as it can be to experience a change when somebody has been diagnosed or when somebody has passed away. Like it's almost just that kind of nostalgic feeling of Christmases are going to change. They're going to continue to change throughout your life. As you say I get old, for example, have my own children. And it's kind of a beautiful thing, in a way. It's just life. And like you say it's, you remember people but then in 10 years time, there might be totally new people on those kinds of videos. I think just Christmas in general. And that kind of time of year is is a nice way to nice way to look at that rather than looking back at it.

Sarah: 18:49

You are caring for somebody right now. I think, for me, the biggest bit of advice that I every time I talk to carers is just remembering that you matter to and to take time out for you. And just to try and live in the moment and not think too far into the future.

Andy: 19:06

I think as well and don't feel guilty about having a good time. Yeah. Because I will say that to my law. I say my last name, I love your family, family who are fantastic. Don't worry about me, if I'm a bit quiet and you carry on you have a good time. I think for carers, it's hard. I know. Do try and enjoy time not all the time. But just if you get in a moment where you're a good films on or there's a good comedy programme, or you're just lost watching the pops or whatever it is, actually embrace that. And that's a good thing. Yeah, look for those and embrace those times. And then that that kind of recharges the batteries a bit for when old grumpy chops comes back downstairs and demands a bit more sort of attention. So don't feel guilty about doing that.

Anna: 19:50

I think that enjoy the moment and focus on the moment and also how we mentioned that Christmas is a big time for reflecting. I think also, alongside that there's a lot of pressure to look into the new year and what the new year ahead is going to be like all these resolutions and be the best version of yourself that you can possibly be. And I think for anybody who's had a diagnosis, anybody who's living with somebody caring for somebody with a diagnosis or anybody who's lost somebody, I think that can be a really hard time to think I've got to make all these plans and all these pressures for the year and how can we improve how can we be better but I think like you said Sarah doesn't just apply It's Christmas Day, I think even pushing forwards. Then, as you head into the new year, just focusing on each moment and each day as it comes, whether you're caring for somebody or grieving, I think it's really important just to Yeah, like you say, just focus on the moment and take the moment and don't feel that pressure to have to make new resolutions and be a better version, because it's not always feasible.

Sarah: 20:48

Absolutely, absolutely. And I feel like that's kind of a nice place to wrap up in there. And I think that's absolutely right.

Andy: 20:57

said it perfectly.

Sarah: 21:00

Well just add, we're going to be taking a break over the holiday season. But we are going to be back online, hopefully by about the 17th. I think we're planning to get an episode out myself and the three guys who really like to thank you for your support over the last year for listening for download and for subscribing, leaving reviews. If you carry on doing that in the next year. That'd be amazing. And generally, I think we'd all like to wish you a very peaceful holiday season and new year.

Anna: 21:30

Yeah, absolutely.

Andy: 21:32

Yeah. Happy Christmas, everyone.

Anna: 21:34

Merry Christmas.

Chandos: 21:36

Happy New Year.

Sarah: 21:38

We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org. And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness