Welcome to my Podcast... Lets Talk About Dementia

I will be sharing some of my experiences, caring for 2 parents who both have Alzheimers / Dementia.

I have been caring for and supporting both of my parents from 165 miles away, so I do appreciate how difficult it can be explaining how to use a remote control over the telephone!

This has caused me lots of anxious times in trying my best to support them.

I also wanted to share my experiences to help others who are on this journey too.

It's a journey that none of us want to be on, however we find ourselves on this journey and it's a journey that we are doing our absolute best on.

Huge hugs and you're doing great!

eUcA2G5Ax0JRjxllpiul

Let's talk about dementia.

There is a, there is an interesting occurrence that happens with people

with Alzheimer's and dementia, and this is a more lighthearted podcast, and I

know that a few of my friends and a few people that I know will recognize this.

and in a world where there is confusion between what is a dishwasher tablet,

and what is a washing machine tablet, and what is a washing machine and what

is a dishwasher and what goes in them.

So I bet there's people out there whose washing has been done in the dishwasher

that's clothes washing . It happens.

So in this world of confusion, there is something that people.

With dementia are really proud of, and you'll be watching the television.

You'll be watching a a program.

There'll be times when say, what did they say?

What did they say?

So you have to keep explaining what people say and what people do, et cetera.

And then the credits will come up at the end of a program

and your loved one, or your friend, or your family member, et cetera.

Will read those credits with such interest and zeal, and if there's a last name

that's similar to theirs or if they had a friend at school with a certain name.

It's an excitable talking point.

It's such a strange characteristic of dementia.

So tell me.

Does this happen with you?

But I know, I know.

I have, there are people I know whose loved ones will happily read

the credits in their olden world.

I remember after a television program where, , I'd be asked so many questions

during the program, what was happening?

What was that?

Who was that?

Et cetera.

We'd get to the end and my dad would proudly read every single credit and turn

around with this big beaming smile on his face as he read them one after another.

And it's something that my mom does now as well.

And it's strange, but when you, when you have a, an advert, that may say

something like Garnet or, you know, Yorkshire tea bags or anything like that

there, there's not much interest in that, but as soon as the credits come on, oh

my word, there's so many interesting words and names, et cetera that come up.

And it's so really interesting part of dementia.

Why do, why are the credit.

, so interesting.

I don't know, but I've seen it, one with dementia, one with Alzheimer's,

and, and it's, and it's something that happens with both of them.

So as I said, it, it, it's something that will happen.

And, and if that hasn't happened yet, , at some point it will start to happen.

You just think, oh, and then another one that happens.

So we have, we have the credits and then.

as you walk driving down the street, you may be driving in

a totally different country.

I, I remember this happened drove into Ostend and I'm driving through

Ostend and Sunland dad says, oh, I know him on that bike there, I

thought, but we're in Belgium now.

At the time it wasn't so unusual because I've gone abroad with my parents and

my dad's met people that he knows at the, at the airport or, you know,

gone to watch a match football match, rugby match, and my dad knows lots of

people you know there because my dad's been a sports person all this life.

And so it, I thought it was rather unusual, but I

thought, well, maybe he does.

But then it happened.

a few hundred yards further down.

I thought, well, you can't know both of those cyclists.

And then as it happened again, I thought, we can't know all three of these cyclists.

And I, again, I dunno the medical explanations of this, it doesn't

really matter, but it's just something that you will observe or

you may observe as part of this.

. And then I remember driving into my local town and suddenly my

mom's saying, oh, do you know what they're, they're there every day.

Aren't they walking down that road?

I thought, but you've never seen it before.

And then we'd drive to a town that we'd never driven to

before to Brighton and sudden.

. My mom is saying, do you know what?

Every time we come down this street, them two are always sat

outside that cafe, aren't they?

And, and I don't know what it is, but this, as you are driving

through places for the first time, they will see familiarity there.

And again, I've got dementia and Alzheimer's one very aggressive one.

Not ag aggressive at all.

And, and it.

, we see the same behaviors, some of the same behaviors,

and probably one of the, the strangest behaviors was, I know that one day we were

going back up to Yorkshire, so my parents have been down with me for a little while.

. I said, oh, do you know what?

Rather than us setting up at tea time, why don't we go for a nice meal?

So we went to one of the local restaurants, had a lovely meal set off

about eight o'clock and, and drove up up north and my dad was in the back of

the car and I kept saying, are you okay?

Are you okay?

Yeah.

Then when we got up to leads my, my dad said, well, I don't know who was driving.

I thought, well, and I said, no.

I was driving.

He says, well, I dunno who was driving, but there were just all these lights

and my dad's explanation of it was pretty similar to being in a spaceship.

And I suddenly thought being in the back of the car with

somebody's head in front of.

just seeing lights flashing past must be really alarming.

But I then realized that trying to drive at night with people in the car with

dementia is a little bit confusing unless they're in the front seat and able to sit.

See.

and again, it's something that I've noticed with my mom during

the day when we're driving.

It's absolutely fine when it starts to get dark.

She's like, oh, what?

What are those lights over there?

It's the lights on the road, et cetera.

But because I'm sat at the side of her, she's, she's able to cope with that.

So again, this is something when you are out and about with somebody with

Alzheimer's dementia, if they're sitting in the back of the car, it,

it can be quite alarming for them.

Sitting in the front is better.

However, if you've got two parents, one has to sit in the front.

Normally, the one who gets car sick sits in the front, and the one who doesn't

get car sick has to sit in the back.

But sometimes it, it's.

If you can please find somebody to sit in the back of the car with them,

cuz it might encourage them and make them a little bit less concerned.

As I said, don't, you know, there's some funny, funny things.

Be careful of noise,

And again, it's only with experience that you get to know this.

people talk about triggers, triggers with dementia, triggers that

can set a certain behavior off.

And, and we, we didn't really know what the triggers were until my dad

had actually left the house and had to go into care, et cetera, because his,

his aggression was, was off the scale.

and I then found out that one of the neighbors had had got somebody

to come and do some work at home.

And my dad wasn't happy with the, with the noise.

And it got to the point where my dad had practically gone

outside and hit this person.

He'd got so aggressive, really, really aggressive with whoever

was trying to do the work.

So that might.

. Good.

Have a chat with your neighbors.

Your neighbors will know.

They will know that there, there are certain things happening, but

to just explain to 'em, look, if you're gonna have any work done,

could you please let me know?

The only reason why I ask is because said, parent gets quite aggressive

over noise, et cetera, and, and it'd be easier if I was there to support them

support you or take them out for the.

So just be aware of that as well, because I had no idea that the person

had actually had to walk off the job because my dad was so, so aggressive.

And and, and what I was told was, yeah, the guy, the person who'd come to do the

work thought my dad was gonna hit him.

So in the end had to walk off and go.

It's, it's just how people present when people are presented with a

situation, how they react, which is very different how to, how we react.

And I, I'll never forget another time, we'd, we'd been we'd driven to

behm actually we'd driven to Ira and.

I'd got a little bit frustrated with, with the car, with driving,

with the same questions, being asked for X number of hours.

We've eventually arrived and were ahead of the time when we can check

into our apartment, et cetera.

So I've stopped the car and I'm waiting to turn right.

I said, right.

We're gonna get out of here in in a few minutes.

Compl, please can we just get parked up and go and sit somewhere and have lunch?

Blah, blah, blah, blah, blah, blah, blah.

At which point my dad jumps out of the car.

You can obviously pick up the fact that I'm a little bit frustrated after

driving probably, I dunno how many hours.

And then , just the first person that is in front of my dad.

My dad's going for, I was just like, I had to jump out the car.

We had to get my dad back into the car.

We had to get the car parked, and it's just like, oh my word.

So if you are driving, please don't display any.

Grumblings because they can pick up on it and if they've got aggression

attached to their dementia.

So we did, we did manage to bond them in the car, get the car parked, then

walk, sit in the restaurant and order a lunche and give him a little drink.

So just be aware of that when you're driving and when we're

talking about going away.

I learned quite some time ago that.

, we always used to go away and we'd have two hotel rooms, you know,

me and my husband, my mom and dad.

But then it got to the point where this isn't really working.

It, it wasn't necessarily that safe because if they, if they wandered

at all, I wouldn't know about it.

So then we moved to apartments.

Now here's a little bit of advice.

So you arrive, , you've got.

, two parents, both of Alzheimer's dementia, one of them has walking

difficulties and you don't have parking directly under your apartment.

You're in the bit middle of a city center.

It's a beautiful apartment in one of, one of our favorite places in

the world, which is Austin End.

We absolutely love it in Austin end, we really do.

And we've spent over the last 20 years, I've spent so much time there.

Just absolutely love it.

So what do you do?

You've got to go and park your car, but if you park your car

then one of them won't be able to walk back there.

Or rather, if they do make it back, then they're going to be Their,

their legs and knees are gonna be so sore from all of that walking.

So anyway, I decided to leave from the apartment right to stay there.

And then I went to park the car, which took me quite some time

because it was a bit of a challenge cuz the roads closed, et cetera.

So I eventually Park the car, start to walk back and all I can

hear is a whole commotion going on about where am I, where am I?

Where am I?

They're no longer in the apartment.

I dunno what floor they're on in this apartment block.

I have to go and find them.

If there's one thing I can, if I can suggest if you're going away, get an

apartment and have somebody else there to.

in the apartment while you park the car.

. Doesn't matter if it's five minutes or an hour, but oh my word.

And by the time I got back there was such a commotion going on.

I, I, I got into the apartment and I think I needed a drink.

And it can be such a challenge cuz you know, if you are in a

hotel, breakfast is at a certain time and breakfast changes you.

You have to serve everybody.

You have to encourage people to eat.

You have to remind people that food is there.

You have to, if they don't like that, then get them something else.

You have to be comfortable, you know, if they want to wander off and

if want needs the low, if the other one doesn't, what you're gonna do.

So it's always better to have two people if you.

, if not, try and get an apartment with parking downstairs.

Which is good, but it just works so much better.

The fact that you can have breakfast whenever you want, getting people up

and dressed in the morning and take a long time because you're encouraging,

you're reminding you're, you are, you know, you're probably having.

do somebody's makeup, do their hair.

You're, you are having to try and supervise showers, toilets, et cetera.

There's a lot to do.

You are then also thinking about, well, what, what are we

gonna have for dinner tonight?

And if you go to Belgium and if you've got an apartment, it's fabulous.

You go to all these amazing little places that sell.

Cured meats and all sorts, and you can get beautiful things like garlic prawns

or fish pies and th they're ready meals, but they are lovingly made by that

local butchers or fish place, et cetera.

So they have made it that day and, and they're just incredible.

So you can, you can make it part of your day that right.

We're gonna go and get our evening meal.

and we're gonna go and we'll get three of them and we'll get three of them

starters and three of them mains.

And then we'll go back and we've got a bottle of wine or a bottle of fish or,

you know, we've got teas and coffees.

We'll go out and have lunch, couple of drinks, a little bit of a wander, and

then we'll go back to the apartment because once it gets to evening,

it can become a little bit confus.

Sometimes some people get a little bit of sundowners.

Some people get a little bit of flustered.

Some people want a little bit of a snooze, so if you're in an

apartment, it really helps that people can just take their time.

Oh, if I'd have only known first time when I went my own, my own, own my word.

And then at the end, what you've got to do is you've got to go and collect

the car and bring the car back.

Do you leave them in the apartment or do you take them to the car park with you?

In the end?

I took them to the car park with me, then drove back.

Oh.

It was just easier.

And going away, you should still go away.

y you know, you, you just have to adapt.

So hotels don't work so much because it's very rigid and scheduled on meal times

when people are coming in to clear clean.

Whereas when you rent an apartment, you know it's yours.

You, no one's gonna come in and clean it.

Well, they certainly don't.

And the ones that we go to, it's clean at the end.

So you can, you can really do your own times.

You know, there's a nice TV in there, you've got a nice set.

It's.

But what you will find during the night, all of a sudden you'll hear,

I dunno if you can hear this, and you can hear, where's the toilet?

Where's the toilet?

Where's the toilet?

So you have to jump outta bed, go and help them get to the toilet and go back.

But if they were in a hotel room on their own, they really wouldn't find it.

And I do, I do know that we've had some, over the years,

we've seen some things happen.

I know I'm one of.

Our holidays over in, was it, was that in ira?

Yes, it was in Ira.

I know that during the night , my dad had gone to find, the toilet cause he needed

the toilet in the middle of the night.

And my husband had also gone to find the toilet and my dad

did not recognize my husband.

You know, it's the middle of the night.

I dunno who this stranger is.

. He went back in, he said there's a block out

So you have to think about that as well.

During the night.

They don't, won't necessarily recognize everyone around.

and if they do bump into a total stranger in the, just in the hallway, in the

apartment that you are, you are renting that can be a bit of a situation and

you may have to explain to people.

And just be prepared and just chill.

And often it is easier to go out for a little bit of a walk during lunchtime,

early afternoon and then go back to the apartments or eat safely, comfortably.

It doesn't get rowdy on it on a nighttime if you are in your apartment, but you

can never guarantee that if you're in a restaurant or if you're in a bar

or if you're walking down the street.

and actually talking about that people will have little quirks and I think for my

dad, what, what he, his wallet was always stuffed, full of notes, plenty of money

and keys and his wallet was something that was constantly looking after and losing.

and by losing, I mean putting in a safe place.

And I'll never forget, we, we were in Austin end, we'd gone there, I

think it was for my birthday, this is quite a few years ago, like

early on in, up, in dementia time.

Anyway, we're walking back from the restaurant and two chaps walked

past and said, evening, I'm my dad.

We carried on back to the apartment, got into the apartment, and then

got to bed and suddenly my dad's flying through our bedroom door.

I've lost my wallet.

My wallet's gone.

It must be them two fellas.

Them two fellas must have taken me wallet.

So just like groggy, right?

Okay, let's start looking around.

So we start looking around and it's just like right where we, let's check this.

Let's chest that.

The apartment goes into absolute opera because when my dad's got so much money

in his wallet, et cetera, and it's just like, right where, what happened?

Where did you go?

When we came back into the apartment anyway, we found

his wallet under his pillow.

And this is something else that there will be certain things that

they are their prize pot possess.

And their prize possessions can end up in the strangest places.

Keys, locks, wallets wallet tended to be under a mattress or under the pillar

and put in jacket in wardrobe in.

Overnight and then taken out again.

Keys were constantly being lost.

We've even found keys that were hidden in the garden buried.

We found them when we started doing a little bit of work.

, and that's where certain bunches of keys got buried for safekeeping.

But I'm sure it was quickly forgotten about where those keys had gone to.

Something else that you will find is there will be, and do you know

what I, I noticed this with my, my grandma as well who had Alzheimer's.

. And whenever something happened, she said, is it in here?

And everything could come out of the handbag.

So whether it was you know, something that you wanted from

the shop, I, I forgot any in here.

And, you know, I'm seeing the same, the same with my mom.

It's, it's that one safe space.

The handbag, that's the trusted handbag.

It's got everything in it, all the worldly goods.

It's safe.

It's.

And I'll say, oh, I need a, it could be anything.

It could be, I need a, a spoon.

I need you know, we, we've lost something.

Is it in here?

Is it in here?

Check in here.

And we have found certain things like remote controls in there over the years.

That's another thing that things may go missing.

Just check the safe places, which is underneath.

Pillow underneath the bed.

Yeah.

And the handbag, it's, it's strange.

And, and something else I just want to share, and this is, this was a,

a little bit of a shocker, so we've been away to Belgium so much because

you know what, we could drive there.

I can't think of anything worse than trying.

navigate an airport with people with Alzheimer's dementia,

it just would not work.

And likewise taking a a normal ferry wasn't great.

So for rules, it was, we could go in the car, we could go on the,

the tunnel, we could go to France, turn left and go up to Belgium.

And it was safe, secure.

We could take a picnic.

We made a day of it, you know, it was an event.

It wasn't just traveling and it was.

. So when we were on the channel you know, get the picnic out, we'd have

the, our bits, we'd go to the duty free a bit before when we could actually go

through through tills, et cetera, with my dad , cuz that got a bit challenging.

But we could travel and we could have fun and we went.

We went to Belgium quite often, but I do remember this one time that'd been away.

We'd, we'd, we'd stayed in some beautiful villas, et cetera over there and then

we got home and I'd traveled all the way back home and we'd had had a snack

when we got home cuz it was quite late.

And took me mom up to mom and dad upstairs and, and my mom just said to me, she says,

oh, she says, we're going away tomorrow.

Aren.

and I should have said yes.

But what I actually said was we've just come back and these are the

little things that they will catch us off guard and we won't see it coming.

But my mom just saw the suit.

and she also knew that we were going away but had totally forgotten about

the last week where we'd just been away.

And that's, it's as heartbreaking as it is when we say those things and

suddenly you see, you know, your loved one's face drop and say, I can't.

Just think, why did we say that?

Why?

Why did I say that?

Why didn't I just say, yeah, we'll go in tomorrow, but we, we are not perfect.

We, we can't be prepared for everything.

We can't anticipate everything and we don't get everything right, but

do you know what We do our best.

We had a week away to traveling to our, what is our, as a family, our favorite.

Country in the world for me, Thailand and Hong Kong were close second afterwards.

But I, I still love, you know, Belgian, that Belgian coast the most.

That's, that's, that's our good place.

And we, we love going there for years and years and years.

So we'd had brilliant memories.

We'd had great feelings being there.

However, the memory of being there gone, which is a.

But we still did it, and it's still important for all of us to make

memories, even when those memories may slip away pretty quickly.

The memories are all there for you, and that's really, really important.

So don't stop making memories.

Don't stop going away.

Don't stop going out.

Don't stop having afternoon tea, lunch, fish and chips, whatever you want to do.

Walk around the park.

Don't stop doing any of that because it.

It's what will make you happy and it makes them happy as well, even

if they can't remember very long.

So you're doing amazingly.

We are all in this, on this journey that none of us want

to be on, but all of us are on.

Take inspiration from yourself, from what you are doing.

Take that You are making a difference.

You are doing your absolute best.

and just remember to take five minutes of your day for you.

That's five minutes where you clear your mind, where you walk out of your

house, whether it's walking to that local post, post post box, whether

it's walking the fields near you, whether it's walking for a pint of.

Just to go out and experience and to feel

the weather, the atmosphere, see the blue skies and just try and clear your mind.

That is your time, your escapism to be you.

I hope that has raise is a smile I made you realize that's happened to me.

Take care of you and keep doing exactly what you are doing.

You take care of yourself.

Much love.