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

Let's talk about dementia, and we are coming up to Christmas.

We're almost a Christmas, and I'm gonna share with this with you as a carer.

And if you know somebody who is a carer, you could do something really, really

special that would light up somebody's life over this Christmas Period.

and as people forget to do, what was norm, normally natural to them.

It's really strange that we go through Christmas and birthdays and anniversaries

and all those special times that we know they, they always bought us a present.

They always wrote as a card, but it gets to a point.

Even writing is really, really difficult.

And then it happens and you don't get a birthday card or a Christmas

card or anything like that.

And the first time it happens, oh my word does it hurt.

It hurts like absolute hell that you.

, you are never gonna get a card again.

And it was really strange a few years ago, um, it, it was after

Christmas and my husband was, you know, putting everything away and

he said, we don't need these doing.

I says, yes, I'm keeping those cards and I don't know why, but I just had this.

You are not throwing those special cards away.

And, and what?

Interesting was I must have had some inner instinct that possibly these

are the last ones I'm ever gonna have.

And I didn't think for one moment that my parents wouldn't be there next year.

Little did I know the, the following year my parents wouldn't

be there as they had been.

They wouldn't be able to write cards, they wouldn't be able to organize that.

And I, I, I remember saying, my mom who'd always done all of the Christmas

shopping, all the Christmas up and all, all of the Christmas cards, spent hours

and hours and hours trying to organize seven presents to, to remember who they

were, to wrap them and to write a note on.

And it was so d.

And I could see the total frustration, the total helplessness.

And even though that year I supported and I took them shopping and like,

come on, let's, we went to Jen Lu, John Lewis, and we did all the, the shopping.

We got gifts for everybody.

We got cards for everybody.

We then got towards the the till and, and my dad did his usual hissy fit meltdown.

Why you were spending all this money?

Because he was going back to childhood that they didn't have very much money.

You couldn't buy expensive presents like this back then.

and trying to explain, trying to get my mom to stay with him while I used

their card to pay for the things.

And it, it just became such a pickle.

And we went home and, uh, you know, I said, right, there you go.

And there's my Christmas card if you just want to write on it.

And it was not possible to write a card.

Just wasn't possible.

and it took me aback and I thought, right, and, and I, I remember

organizing a card from my mom to my dad and saying, there you go, mom.

If you can just sign your name there and just sign in a name.

Was it a signature?

Was it a name?

How did you do that?

And doing the same with my dad.

So the two of them had a cat.

And I've done that every year until.

They can no longer sign.

So I sign on their behalf for get moon pig cards, but you suddenly realize

that you are not getting a card.

It, it's . It's so funny.

It's only a card, but it's another thing that has ended

and.

. I remember it was a birthday and I just said to everyone, I'm not putting my cards

up because I don't want mom, my, my mom to see them and think, oh, I've forgotten.

But I didn't, for some reason, I just couldn't bring myself to sit down and say,

come on, mom, write my Christmas card.

Or write my birthday card is just,

Then the following year, my husband realized what I should

have done was said much earlier.

Look, excuse me, just for me, could you sit down with my mum

and get her to write a card?

Well, this year he did, and he'd gone and he'd bought a card and got her

to sit down and to try and write it.

And he said, oh my God, that was so.

and that's when people realize how many of the, how many of these

naturally learnt skills disappear.

And it's, it's not through lack of practice, it's just that it

becomes really, really difficult.

And that bit, bit of the memories lost.

and we're a few days away from Christmas, and you may be listening to this after

Christmas, but if you are, and if you thought you didn't get the card,

we've, I hear you and I feel for you.

I, I really do.

I know what it's like.

It is harrowing.

If you know somebody who is a carer, or who has relatives

who have Alzheimer's dementia.

One of the biggest things that you could do to try and help out is pop around

there, try and get them to put even a squiggle on a card and write on the front.

It's, I've never put much importance on cards in my whole life, but,

but when that card doesn't come,

it is heart wrenching that you want to be able to solve this, to, to find a

solution, to find a cure, to, to put that memory back, to be able to get somebody

to have eye hand, brain coordination, sign a name for that has gone a squi.

, it's incredible

presence.

Forget , if you're gonna have presence as a carer, you have to go out

and buy them , wrap them yourself.

And, um, and so many years I haven't.

And for once, I actually have, and I've, I've gone and I've got something

from my mom and dad for me to.

. It's one of the hardest, hardest times in the world, in our lives.

Um, and everything is going on around us, isn't it?

She's, oh my God, Christmas is so stressful and I've got so much

on, and I've got no much time.

And, um, I wish I had a third fridge to put everything in for this big lunch.

And, and, and you think.

I, I will be honest.

Christmas Day for us is about my, my dad's behavior is just not manageable at home.

The aggression is not, it's not safe to have my dad at home.

So my dad is in a, a nursing home, a a very specialist unit that deals

with extremely challenging behavior.

So our Christmas day, thankfully we don't have Covid now, so we

can go and visit, but that is going to be visiting somebody who.

now doesn't communicate very much.

And so we are going to have, we're going to , I suppose.

I, I will use the term break bread together.

Um, but we're gonna have soup, which is what my dad can eat.

So we will sit there, we'll try and watch some tv.

We will have bread, we will have, I'll have the gluten-free

bread , because we'll have normal bread, we'll have soup and we, I.

Keep that conversation going for however many hours we are there.

And it's really strange when you think I, I am, of course I'm doing it for me

as well, but I'm, I'm doing it for my parents who still love each other to

bits, and I've been married 54 years and

spending the day.

in a care home bedroom, watching the tv, just being together as a,

you know, as a family and enabling them to sit there and hold hands and,

um, and what I don't want to do is have food for us and food for my dad.

So it's just like, no, we all go together so we can all have trifold, we can all

have, so we can all have some foam bread.

It's fine.

and when you realize that cards are gone, presents are gone.

So if, if you know somebody who is, is a carer, it's an amazing

thing to be able to just do a card.

And even if you explain it for them, if you sign it for their loved one, oh my.

, that's, that's amazing.

To go round.

Just have a cup of tea would be amazing.

It's, it's a really strange time where you, you remember how wonderful

Christmases have always been and how close you've always been, and the fact that

you've always spent Christmas Day together and it's always been this mad rush.

Try and get from London back up to leads on the train.

, uh, we've just had so much going on and we've all, all, I have been waiting

down south to see if my parents can get the car out of the village, which

is on a hill, and eventually they made it so they're on their way and they

are gonna make Christmas dinner and we couldn't have had Christmas without them.

Um, and we're still doing that.

Uh, but it has changed and it's different.

So we try and make Christmas as much of Christmas as we can for all the people.

However, a lot of the time, Christmas day is just another day and we have to take,

we have to have permission for Christmas Day to be whatever it's

going to be, to really not put on you pressure on ourselves,

because as I said, Christmas Day.

It's another day.

It's another day together.

It's another day of people being changed.

Um, but any little gift is amazing.

I'll, I'll never forget, we went to the care home once and saw my dad and

he gave, he had two biscuits and he gave me one and he gave my mom one.

And that is still in a little tin in my house.

I've never got rid of it.

It's just, Treasure, those little things.

And as you come across cars, cuz you know people, we, I am very, very lucky.

Both of my parents still know who I am today.

I dunno what tomorrow will bring.

That isn't the same for everybody.

Some, some people are living with someone who, who thinks that they are

a stranger, that they are an imposter, that they are taking their home.

So it's a really.

Tough time for people who have someone living in their house.

They may have been married to them for years and years and years, and

they may see them as a stranger.

So any cards that you may have, just pop them in a little box, even if

it's up in the, you know, upstairs.

Or if you can find one from previous years, just take that out.

and you don't have to put it up because sometimes things can get damaged.

, um, bits of rage can happen.

I totally get that.

But just hold that and think a few years ago before this disease took hold,

that's the sort of message that you.

, it's really hard transforming ourselves back to times when things were

normal, times when things were not changed by Alzheimer's or dementia.

Um, so we still try as a family to create this Christmas day.

And if I take a step back, why do we do it?

I don't know.

I think it's just because we're trying to, um, have some normality.

, yeah.

Have some normality and it's totally fine if you just decide to shut

the door and say, do you know what?

Today is just another day.

Christmas day is no longer Christmas day.

But do if you can get an old card out and just take a read of that and remember

different times, I won't say better times.

I will say different.

Do get the smallest gift, the got the smallest gift do by

yourself and me to me present.

And I, and I don't care if that's your favorite, favorite chocolate

bar , or if it's your favorite biscuit, or if it's a little stone

or pebble that you found on a little.

and you remember that that was five minutes of you time can be a whole host of

different things, but just have a little bit of me to me time as well, a little

bit of time to think about you because you will be spending your whole time.

. Thinking about others, supporting others, worrying about others worrying where

help and support is going to come from.

You need time for you.

It, it never goes away.

There is constant pressure, there are constant things to do, but,

um, please take time for you.

And as I said, if you are, if you do know somebody who is a carer,

It would be lovely if you could arrange a little Christmas card from them.

And if you are a carer and you know other people who would love to know more or

would like to support you or even your family, please share this one with them.

Cuz you never know.

Somebody may think, I never even realized about the card.

Do you know what?

I'm gonna do that.

I'm going to do that and arrange.

It's, uh, it's a strange thing that you, you don't realize until it happens.

You just don't realize though, these normal things are going to end.

You don't realize that you're gonna sit there on Christmas Day and talk

about Christmas Day and, um, be part of Christmas Day, and there'd

be absolute no appreciation of or understanding of what Christmas Day.

It is just another day, and it can be just another day.

If that's what you want.

If you want to try and celebrate, then you can make it into something special.

It can be a challenge with families as well.

I, I, I totally get, because the world is going on in everybody else's

home, in everyone else's life, and, and ours has, , it's different.

It's as if we're stuck in, in some strange dream.

And if you have a friend or a relative who would like to come round, what?

What is, what is really great for people with Alzheimer's or dementia?

Well, this is just what I've found.

They all seem to love children.

They all seem to love.

and they tend to like one OnOne support.

So if there's lots of people in a room, it's really hard for them to

try and keep up with the conversation because their conversation, uh,

their ability to keep up with the.

Conversation is reduced because they can't word, word association,

word understanding changes.

If you say to someone, right, let, let's put this jumper on, they don't

actually know what a jumper is.

So you have to point, let's put this jumper on, uh, let's put these shoes on.

Um, let's go through that door.

And pointing, guiding towards it is the easiest way.

So when people are having conversations, Um, the person may be in the room, but

the person may not feel part of the room.

Um, so it's really good to have smaller groups of people because what will

happen is they'll ta tend to talk amongst themselves rather than talking to the

person with Alzheimer's dementia, and, and it's hard to try and re remember that.

But yeah, if people could pop round in ones and twos and just be present, and

we don't talk, do people like this, but we do say, are you enjoying this program?

I'm waiting for them to answer.

And if there's no response saying, just try and have a conversation

one-to-one with that person.

It's a strange time of year.

Very strange time of year.

It's one that we push through, we get through it, we get to the other

side, we psych ourselves up to, okay, I'm not gonna get a card.

I'm not gonna get a present.

I'm not gonna have this.

I'm not gonna have that.

I'm go.

So what we do is for others and.

You are absolutely right to take a step back and think about some time for you.

Think about what would be, what you would like, what you would like to

watch, what you would like to read, what crochet, knitting, painting,

gardening you would like to do.

So please just have a think about that for.

and if you have got five minutes and you know of somebody who is caring for

somebody, it may, it may be a couple.

Do you know what to knock on the door?

A few min pies or the box of chocolates doesn't necessarily

have to be on Christmas day either.

, but just to sit and have a chat time and emotional connection with others.

Honestly, the value of that is just absolutely huge.

Absolutely huge.

So if there's something that you can, you can do for

yourself, um, take time for you.

And if you know of somebody who may be looking after.

A family member, whether that's because they live with them, or maybe it's because

they're in a, you know, they, they have unfortunately had to go into a care home,

a little bit of time, friendly ear to just listen, just have a cup of

tea would be absolutely amazing.

. It is a very lonely world.

Being a carer.

You know, you, you are consumed by caring for people.

You may have one parent, you may have two, like my me, who both have it.

Um, one of my friends, she was blessed until recently had three, she, both

parents and one of her in-laws with this.

And, and it is an all-consuming.

, we're doing our absolute best.

This is not a journey anyone ever wants to be on.

It's one that we find ourselves on.

And if you know of anybody, reach out please and, um, just be there for them.

A phone call, quick text, but a human voice is a beautiful thing to hear.

And with that, I want to wish you well, and I also want to say that if this is

the first year that you don't get that Christmas card or a Christmas present,

I really feel for you emotionally it is.

It w it is a hard one to push through, but push through.

You will, you will probably have gone round and got everything.

Tried to make everything as normal, tried to send the cards, and then

after a year or two, I put my hands up and think, forget it.

I, I have enough on now.

I, I am, I am past worrying about sending cards and about giving presents

because it just, just the way life is

and I'm sure that some people think.

if they don't get anything back, , and I saw, I apologize, uh, but life

is just crazy every single day.

So please, please, please look after you, look after your loved ones and.

Be kind to you and those around, but more importantly to you, um, give

yourself that little bit of encouragement that you are doing Amazingly, you are

doing amazingly, and this world could not survive without people like you.

From my house to your house, I am sending hugs and I.

That this has given you a little bit of inspiration that we are all on the same

journey, experiencing very similar things, and you will get through Christmas,

you will get to the other side, and we will see you on that other side.

This is Angela from my Dementia Road trip, and I will see you soon.