Missing Christmas Cards and Dementia Carers
Christmas is a strange time for dementia carers.
If this Podcast, I share my own personal experience of Christmas and the missing Christmas cards.
it's a very emotional time of year and whether you're a carer, or know of a carer, this podcast is for you.
Till next time
Angela
xxx
Transcript
Let's talk about dementia, and we are coming up to Christmas.
Speaker:We're almost a Christmas, and I'm gonna share with this with you as a carer.
Speaker:And if you know somebody who is a carer, you could do something really, really
Speaker:special that would light up somebody's life over this Christmas Period.
Speaker:and as people forget to do, what was norm, normally natural to them.
Speaker:It's really strange that we go through Christmas and birthdays and anniversaries
Speaker:and all those special times that we know they, they always bought us a present.
Speaker:They always wrote as a card, but it gets to a point.
Speaker:Even writing is really, really difficult.
Speaker:And then it happens and you don't get a birthday card or a Christmas
Speaker:card or anything like that.
Speaker:And the first time it happens, oh my word does it hurt.
Speaker:It hurts like absolute hell that you.
Speaker:, you are never gonna get a card again.
Speaker:And it was really strange a few years ago, um, it, it was after
Speaker:Christmas and my husband was, you know, putting everything away and
Speaker:he said, we don't need these doing.
Speaker:I says, yes, I'm keeping those cards and I don't know why, but I just had this.
Speaker:You are not throwing those special cards away.
Speaker:And, and what?
Speaker:Interesting was I must have had some inner instinct that possibly these
Speaker:are the last ones I'm ever gonna have.
Speaker:And I didn't think for one moment that my parents wouldn't be there next year.
Speaker:Little did I know the, the following year my parents wouldn't
Speaker:be there as they had been.
Speaker:They wouldn't be able to write cards, they wouldn't be able to organize that.
Speaker:And I, I, I remember saying, my mom who'd always done all of the Christmas
Speaker:shopping, all the Christmas up and all, all of the Christmas cards, spent hours
Speaker:and hours and hours trying to organize seven presents to, to remember who they
Speaker:were, to wrap them and to write a note on.
Speaker:And it was so d.
Speaker:And I could see the total frustration, the total helplessness.
Speaker:And even though that year I supported and I took them shopping and like,
Speaker:come on, let's, we went to Jen Lu, John Lewis, and we did all the, the shopping.
Speaker:We got gifts for everybody.
Speaker:We got cards for everybody.
Speaker:We then got towards the the till and, and my dad did his usual hissy fit meltdown.
Speaker:Why you were spending all this money?
Speaker:Because he was going back to childhood that they didn't have very much money.
Speaker:You couldn't buy expensive presents like this back then.
Speaker:and trying to explain, trying to get my mom to stay with him while I used
Speaker:their card to pay for the things.
Speaker:And it, it just became such a pickle.
Speaker:And we went home and, uh, you know, I said, right, there you go.
Speaker:And there's my Christmas card if you just want to write on it.
Speaker:And it was not possible to write a card.
Speaker:Just wasn't possible.
Speaker:and it took me aback and I thought, right, and, and I, I remember
Speaker:organizing a card from my mom to my dad and saying, there you go, mom.
Speaker:If you can just sign your name there and just sign in a name.
Speaker:Was it a signature?
Speaker:Was it a name?
Speaker:How did you do that?
Speaker:And doing the same with my dad.
Speaker:So the two of them had a cat.
Speaker:And I've done that every year until.
Speaker:They can no longer sign.
Speaker:So I sign on their behalf for get moon pig cards, but you suddenly realize
Speaker:that you are not getting a card.
Speaker:It, it's . It's so funny.
Speaker:It's only a card, but it's another thing that has ended
Speaker:and.
Speaker:. I remember it was a birthday and I just said to everyone, I'm not putting my cards
Speaker:up because I don't want mom, my, my mom to see them and think, oh, I've forgotten.
Speaker:But I didn't, for some reason, I just couldn't bring myself to sit down and say,
Speaker:come on, mom, write my Christmas card.
Speaker:Or write my birthday card is just,
Speaker:Then the following year, my husband realized what I should
Speaker:have done was said much earlier.
Speaker:Look, excuse me, just for me, could you sit down with my mum
Speaker:and get her to write a card?
Speaker:Well, this year he did, and he'd gone and he'd bought a card and got her
Speaker:to sit down and to try and write it.
Speaker:And he said, oh my God, that was so.
Speaker:and that's when people realize how many of the, how many of these
Speaker:naturally learnt skills disappear.
Speaker:And it's, it's not through lack of practice, it's just that it
Speaker:becomes really, really difficult.
Speaker:And that bit, bit of the memories lost.
Speaker:and we're a few days away from Christmas, and you may be listening to this after
Speaker:Christmas, but if you are, and if you thought you didn't get the card,
Speaker:we've, I hear you and I feel for you.
Speaker:I, I really do.
Speaker:I know what it's like.
Speaker:It is harrowing.
Speaker:If you know somebody who is a carer, or who has relatives
Speaker:who have Alzheimer's dementia.
Speaker:One of the biggest things that you could do to try and help out is pop around
Speaker:there, try and get them to put even a squiggle on a card and write on the front.
Speaker:It's, I've never put much importance on cards in my whole life, but,
Speaker:but when that card doesn't come,
Speaker:it is heart wrenching that you want to be able to solve this, to, to find a
Speaker:solution, to find a cure, to, to put that memory back, to be able to get somebody
Speaker:to have eye hand, brain coordination, sign a name for that has gone a squi.
Speaker:, it's incredible
Speaker:presence.
Speaker:Forget , if you're gonna have presence as a carer, you have to go out
Speaker:and buy them , wrap them yourself.
Speaker:And, um, and so many years I haven't.
Speaker:And for once, I actually have, and I've, I've gone and I've got something
Speaker:from my mom and dad for me to.
Speaker:. It's one of the hardest, hardest times in the world, in our lives.
Speaker:Um, and everything is going on around us, isn't it?
Speaker:She's, oh my God, Christmas is so stressful and I've got so much
Speaker:on, and I've got no much time.
Speaker:And, um, I wish I had a third fridge to put everything in for this big lunch.
Speaker:And, and, and you think.
Speaker:I, I will be honest.
Speaker:Christmas Day for us is about my, my dad's behavior is just not manageable at home.
Speaker:The aggression is not, it's not safe to have my dad at home.
Speaker:So my dad is in a, a nursing home, a a very specialist unit that deals
Speaker:with extremely challenging behavior.
Speaker:So our Christmas day, thankfully we don't have Covid now, so we
Speaker:can go and visit, but that is going to be visiting somebody who.
Speaker:now doesn't communicate very much.
Speaker:And so we are going to have, we're going to , I suppose.
Speaker:I, I will use the term break bread together.
Speaker:Um, but we're gonna have soup, which is what my dad can eat.
Speaker:So we will sit there, we'll try and watch some tv.
Speaker:We will have bread, we will have, I'll have the gluten-free
Speaker:bread , because we'll have normal bread, we'll have soup and we, I.
Speaker:Keep that conversation going for however many hours we are there.
Speaker:And it's really strange when you think I, I am, of course I'm doing it for me
Speaker:as well, but I'm, I'm doing it for my parents who still love each other to
Speaker:bits, and I've been married 54 years and
Speaker:spending the day.
Speaker:in a care home bedroom, watching the tv, just being together as a,
Speaker:you know, as a family and enabling them to sit there and hold hands and,
Speaker:um, and what I don't want to do is have food for us and food for my dad.
Speaker:So it's just like, no, we all go together so we can all have trifold, we can all
Speaker:have, so we can all have some foam bread.
Speaker:It's fine.
Speaker:and when you realize that cards are gone, presents are gone.
Speaker:So if, if you know somebody who is, is a carer, it's an amazing
Speaker:thing to be able to just do a card.
Speaker:And even if you explain it for them, if you sign it for their loved one, oh my.
Speaker:, that's, that's amazing.
Speaker:To go round.
Speaker:Just have a cup of tea would be amazing.
Speaker:It's, it's a really strange time where you, you remember how wonderful
Speaker:Christmases have always been and how close you've always been, and the fact that
Speaker:you've always spent Christmas Day together and it's always been this mad rush.
Speaker:Try and get from London back up to leads on the train.
Speaker:, uh, we've just had so much going on and we've all, all, I have been waiting
Speaker:down south to see if my parents can get the car out of the village, which
Speaker:is on a hill, and eventually they made it so they're on their way and they
Speaker:are gonna make Christmas dinner and we couldn't have had Christmas without them.
Speaker:Um, and we're still doing that.
Speaker:Uh, but it has changed and it's different.
Speaker:So we try and make Christmas as much of Christmas as we can for all the people.
Speaker:However, a lot of the time, Christmas day is just another day and we have to take,
Speaker:we have to have permission for Christmas Day to be whatever it's
Speaker:going to be, to really not put on you pressure on ourselves,
Speaker:because as I said, Christmas Day.
Speaker:It's another day.
Speaker:It's another day together.
Speaker:It's another day of people being changed.
Speaker:Um, but any little gift is amazing.
Speaker:I'll, I'll never forget, we went to the care home once and saw my dad and
Speaker:he gave, he had two biscuits and he gave me one and he gave my mom one.
Speaker:And that is still in a little tin in my house.
Speaker:I've never got rid of it.
Speaker:It's just, Treasure, those little things.
Speaker:And as you come across cars, cuz you know people, we, I am very, very lucky.
Speaker:Both of my parents still know who I am today.
Speaker:I dunno what tomorrow will bring.
Speaker:That isn't the same for everybody.
Speaker:Some, some people are living with someone who, who thinks that they are
Speaker:a stranger, that they are an imposter, that they are taking their home.
Speaker:So it's a really.
Speaker:Tough time for people who have someone living in their house.
Speaker:They may have been married to them for years and years and years, and
Speaker:they may see them as a stranger.
Speaker:So any cards that you may have, just pop them in a little box, even if
Speaker:it's up in the, you know, upstairs.
Speaker:Or if you can find one from previous years, just take that out.
Speaker:and you don't have to put it up because sometimes things can get damaged.
Speaker:, um, bits of rage can happen.
Speaker:I totally get that.
Speaker:But just hold that and think a few years ago before this disease took hold,
Speaker:that's the sort of message that you.
Speaker:, it's really hard transforming ourselves back to times when things were
Speaker:normal, times when things were not changed by Alzheimer's or dementia.
Speaker:Um, so we still try as a family to create this Christmas day.
Speaker:And if I take a step back, why do we do it?
Speaker:I don't know.
Speaker:I think it's just because we're trying to, um, have some normality.
Speaker:, yeah.
Speaker:Have some normality and it's totally fine if you just decide to shut
Speaker:the door and say, do you know what?
Speaker:Today is just another day.
Speaker:Christmas day is no longer Christmas day.
Speaker:But do if you can get an old card out and just take a read of that and remember
Speaker:different times, I won't say better times.
Speaker:I will say different.
Speaker:Do get the smallest gift, the got the smallest gift do by
Speaker:yourself and me to me present.
Speaker:And I, and I don't care if that's your favorite, favorite chocolate
Speaker:bar , or if it's your favorite biscuit, or if it's a little stone
Speaker:or pebble that you found on a little.
Speaker:and you remember that that was five minutes of you time can be a whole host of
Speaker:different things, but just have a little bit of me to me time as well, a little
Speaker:bit of time to think about you because you will be spending your whole time.
Speaker:. Thinking about others, supporting others, worrying about others worrying where
Speaker:help and support is going to come from.
Speaker:You need time for you.
Speaker:It, it never goes away.
Speaker:There is constant pressure, there are constant things to do, but,
Speaker:um, please take time for you.
Speaker:And as I said, if you are, if you do know somebody who is a carer,
Speaker:It would be lovely if you could arrange a little Christmas card from them.
Speaker:And if you are a carer and you know other people who would love to know more or
Speaker:would like to support you or even your family, please share this one with them.
Speaker:Cuz you never know.
Speaker:Somebody may think, I never even realized about the card.
Speaker:Do you know what?
Speaker:I'm gonna do that.
Speaker:I'm going to do that and arrange.
Speaker:It's, uh, it's a strange thing that you, you don't realize until it happens.
Speaker:You just don't realize though, these normal things are going to end.
Speaker:You don't realize that you're gonna sit there on Christmas Day and talk
Speaker:about Christmas Day and, um, be part of Christmas Day, and there'd
Speaker:be absolute no appreciation of or understanding of what Christmas Day.
Speaker:It is just another day, and it can be just another day.
Speaker:If that's what you want.
Speaker:If you want to try and celebrate, then you can make it into something special.
Speaker:It can be a challenge with families as well.
Speaker:I, I, I totally get, because the world is going on in everybody else's
Speaker:home, in everyone else's life, and, and ours has, , it's different.
Speaker:It's as if we're stuck in, in some strange dream.
Speaker:And if you have a friend or a relative who would like to come round, what?
Speaker:What is, what is really great for people with Alzheimer's or dementia?
Speaker:Well, this is just what I've found.
Speaker:They all seem to love children.
Speaker:They all seem to love.
Speaker:and they tend to like one OnOne support.
Speaker:So if there's lots of people in a room, it's really hard for them to
Speaker:try and keep up with the conversation because their conversation, uh,
Speaker:their ability to keep up with the.
Speaker:Conversation is reduced because they can't word, word association,
Speaker:word understanding changes.
Speaker:If you say to someone, right, let, let's put this jumper on, they don't
Speaker:actually know what a jumper is.
Speaker:So you have to point, let's put this jumper on, uh, let's put these shoes on.
Speaker:Um, let's go through that door.
Speaker:And pointing, guiding towards it is the easiest way.
Speaker:So when people are having conversations, Um, the person may be in the room, but
Speaker:the person may not feel part of the room.
Speaker:Um, so it's really good to have smaller groups of people because what will
Speaker:happen is they'll ta tend to talk amongst themselves rather than talking to the
Speaker:person with Alzheimer's dementia, and, and it's hard to try and re remember that.
Speaker:But yeah, if people could pop round in ones and twos and just be present, and
Speaker:we don't talk, do people like this, but we do say, are you enjoying this program?
Speaker:I'm waiting for them to answer.
Speaker:And if there's no response saying, just try and have a conversation
Speaker:one-to-one with that person.
Speaker:It's a strange time of year.
Speaker:Very strange time of year.
Speaker:It's one that we push through, we get through it, we get to the other
Speaker:side, we psych ourselves up to, okay, I'm not gonna get a card.
Speaker:I'm not gonna get a present.
Speaker:I'm not gonna have this.
Speaker:I'm not gonna have that.
Speaker:I'm go.
Speaker:So what we do is for others and.
Speaker:You are absolutely right to take a step back and think about some time for you.
Speaker:Think about what would be, what you would like, what you would like to
Speaker:watch, what you would like to read, what crochet, knitting, painting,
Speaker:gardening you would like to do.
Speaker:So please just have a think about that for.
Speaker:and if you have got five minutes and you know of somebody who is caring for
Speaker:somebody, it may, it may be a couple.
Speaker:Do you know what to knock on the door?
Speaker:A few min pies or the box of chocolates doesn't necessarily
Speaker:have to be on Christmas day either.
Speaker:, but just to sit and have a chat time and emotional connection with others.
Speaker:Honestly, the value of that is just absolutely huge.
Speaker:Absolutely huge.
Speaker:So if there's something that you can, you can do for
Speaker:yourself, um, take time for you.
Speaker:And if you know of somebody who may be looking after.
Speaker:A family member, whether that's because they live with them, or maybe it's because
Speaker:they're in a, you know, they, they have unfortunately had to go into a care home,
Speaker:a little bit of time, friendly ear to just listen, just have a cup of
Speaker:tea would be absolutely amazing.
Speaker:. It is a very lonely world.
Speaker:Being a carer.
Speaker:You know, you, you are consumed by caring for people.
Speaker:You may have one parent, you may have two, like my me, who both have it.
Speaker:Um, one of my friends, she was blessed until recently had three, she, both
Speaker:parents and one of her in-laws with this.
Speaker:And, and it is an all-consuming.
Speaker:, we're doing our absolute best.
Speaker:This is not a journey anyone ever wants to be on.
Speaker:It's one that we find ourselves on.
Speaker:And if you know of anybody, reach out please and, um, just be there for them.
Speaker:A phone call, quick text, but a human voice is a beautiful thing to hear.
Speaker:And with that, I want to wish you well, and I also want to say that if this is
Speaker:the first year that you don't get that Christmas card or a Christmas present,
Speaker:I really feel for you emotionally it is.
Speaker:It w it is a hard one to push through, but push through.
Speaker:You will, you will probably have gone round and got everything.
Speaker:Tried to make everything as normal, tried to send the cards, and then
Speaker:after a year or two, I put my hands up and think, forget it.
Speaker:I, I have enough on now.
Speaker:I, I am, I am past worrying about sending cards and about giving presents
Speaker:because it just, just the way life is
Speaker:and I'm sure that some people think.
Speaker:if they don't get anything back, , and I saw, I apologize, uh, but life
Speaker:is just crazy every single day.
Speaker:So please, please, please look after you, look after your loved ones and.
Speaker:Be kind to you and those around, but more importantly to you, um, give
Speaker:yourself that little bit of encouragement that you are doing Amazingly, you are
Speaker:doing amazingly, and this world could not survive without people like you.
Speaker:From my house to your house, I am sending hugs and I.
Speaker:That this has given you a little bit of inspiration that we are all on the same
Speaker:journey, experiencing very similar things, and you will get through Christmas,
Speaker:you will get to the other side, and we will see you on that other side.
Speaker:This is Angela from my Dementia Road trip, and I will see you soon.
