Are you on this journey, you're a carer for someone, or some people with Alzheimers / Dementia?

In this podcast, I share how a conversation about a Dementia Review brought me to tears.

Don't sit there in silence, as I do believe that there may be hope to getting help for us now were in post covid days.

Here's to you and the amazing person that you are, doing an amazing job and being truly incredible.

Hi there.

This is Angela from My Dementia Road trip, and it's been a little while since I have

had the energy to do a podcast, and I want to hope that the, you found some happiness

over the Christmas and New Year time.

I, I know how tough it can.

I really do know how tough it can be.

It's a time when the rest of the world seems to be rejoicing in happiness

and, and we, we have the same stuff, just a different day when we would, we

may love to be involved in Christmas, however, our loved ones don't really

understand what Christmas is anymore.

It's a really, really, really tough time,

And I want to share a, a little shred of hope with you because I, I

started on this Alzheimer's dementia journey, about eight, nine years?

, with early signs and we've gone through family members not wanting to go to

the doctors and not wanting to get diagnosed, not thinking there was

anything wrong, knowing that there was, but not wanting to have any, anyone

tell them there was anything wrong.

So I totally get how much of a challenge that can be and then.

Things for us became really difficult at the beginning of lockdown when my dad had

been ill, he went into hospital, he'd had covid, well, he tested positive for Covid,

and then he came out two weeks later.

Very changed.

Extremely changed, and there was a certain aggression that wasn't manageable at home.

Really wasn't manageable at home.

It, it scared me.

I was scared for my mom.

, so we had to go through the heartbreaking situation of saying that his

behavior was not manageable at home.

And when he first went into a and e, because that was the only way we

could sort of cope with it, deal with it, , they said there's nothing wrong.

But after we'd been there only a matter of hours, , my dad then went to attack

one of the nurses who was pushing a trolley and, and, and my dad just thought

he was fighting somebody in a war.

And it was at that point that the hospital saw that there was like this red mist.

And that it wasn't practical for my dad to come home.

, and it was heartbreaking.

But, you know, life is not about easy choices, is it?

Life is often about really, really hard choices as well.

I and something.

People said, oh, you know, this help, there's all these charities, there's

this, there's that, this, give these a call, and all I got, all I got was,

here's a pdf, here's some advice.

And, and I, I remember just being heartbroken, absolutely

heartbroken that I am, I am dealing with this horrific situation.

I need help.

I am locked in a house and there is no help.

No nurses would come to the house, no advisors.

There were no groups that were open.

So my experience of, , Alzheimer's dementia support.

For somebody who's caring for not one, but two parents was that there

was absolutely nothing out there.

There was diddly squat.

I couldn't go to a, a doctor and see a doctor.

I couldn't see.

I, I couldn't go to a, a group.

I, I had absolutely nothing.

I got one phone call that advised me.

financial support was out there.

And then at the end of it, it was just like, oh, well , if they're saving to

that, then no, you just pay for it.

So you may have experienced this as well, but that was my, you know, I had

to find a care home and we found it one.

That my dad was happy, and it's not about me.

It's not about the CQC results.

It's not about what they say.

It's whether your loved one is happy in there.

And my dad, my dad is,

and I just remember it being the loneliest place I'd ever been in.

I, I had one.

Beacon of light and my beacon of light was, , it, it's place, it's called

Leed's Carers, I believe it's a charity.

And they were incredible.

They spoke to social workers for me.

They gave me advice.

They, they supported me and said, yeah, it was totally right to say no

to a certain well , few different care homes that just were not the right fit.

and they , and I see so many people who say, you know, they're wanting to

move them to this one isn't right and it's too far away and blah, blah, blah.

And, um, you do have rights.

And they at times spoke to social workers for me and they at times spoke to the care

home for me and to the hospital for me,

. They changed my life and

So whatever your area you are in, they will be a carers and your local

town or or your local county and it's just have a look for them because they

will be an amazing support for you.

And I really wanted.

, so we had over two years of lockdown really, didn't we, when

things did not go back to normal.

And, and even now, there is still, there are still certain shops that you go in

where they limit the numbers where.

, it hasn't quite gone back to normal.

And it's so frustrating because what people, what carers, what

loved ones want is they want to be part, they want to be understood.

They want to to find friends.

They want to find somewhere comfortable that they can fit in and,

and so much has been closed to us for the last two and a half years.

And just before Christmas, I had this meeting.

with the doctors about my mom, dementia review, and I

thought, well, what's the point?

No, we've been going to, well, we've been having an annual catch

up with the, , the memory clinic.

Now, who, other than prescribing some tablets, have done nothing.

That's it.

My, my mom refuses to take the tablets.

But they gave her a certain level and she got really emotional and

depressed on them, so she came off them and felt much better off them.

Tablets don't suit everyone.

And the other thing as well, the longer somebody has Alzheimer's or dementia,

the, the more weight they will lose.

So where somebody may need to be on 10 milligrams or 20 milligrams, you know,

once they've lost a lot of weight, what?

What's the new level that should be on?

And this is something that I don't see happens, you know,

it's a once a year review.

. So anyway, , I nearly canceled this blinking appointment as well.

I'm telling you, I, I really felt like canceling it, thinking

it's just coming up to Christmas.

I'm going up till leaves down back home, you know, it's 165

miles every time I make a journey.

But I did go for this dementia review, and, and you will laugh at this as well,

just as I'm leaving the house with my mum.

I went outside, I went next door because a card had been delivered to

my parents' house by a mistake, . And I went flying and I dunno how I did it.

I just hit the ground with my ribcage and my knees and got myself up after it.

Totally winding myself going to the doctors and I dunno whether.

it was that, or whether it was me and you know, just how life is.

Anyway, uh, we went for this dementia review and there's a,

there's a group of people there who are there to support people with

dementia, Alzheimer's, whatever you want to call it, memory issues.

It was a lovely lady.

Really lovely lady.

She then said to me, how was I?

Well, I just welled up

and I couldn't answer.

And they were just tears and it was really hard and my mom was at the side of me.

It's just like I, I, I have to be strong.

and she just said, shall I give you a call another time?

And said, yes, please.

So we had this meeting in which she said, oh, what about some of the

groups, some of the local groups?

And I said, oh, what do you think?

And you know, they've got singing groups and all sorts, and because

these things are opening up again.

. But because we've had two and a half years of knowing nothing about them, we don't

know what they are, where they are, what has to happen, you know, I've got no idea.

So somebody called me the following day about this and just like, yes, please.

Now I still haven't got the paperwork through or where they are, but I'm

sure we'll find 'em eventually.

Um, and then a couple of days after that, adult social services called me.

, and this is really what I want to talk to you carers about, because I've

had no help, no support, no nothing.

It's, it's just, it, it's really tough.

, I said, oh, you know, we've got this thing, uh, they should be sending us

some information through and and.

do you think that's enough?

Do you think you might want a bit of a break for a night or two?

Possibly some respite.

And again, the, the tears were just incredible.

That, and, and you know, this person said to me, look, we can do a carers

review on you and also your mom, but I.

, you might have carers burn out.

And I thought, oh my, word?

Somebody's actually recognized that cuz.

Cuz every day.

, we get up, don't we?

We get dressed, we put our makeup on, we, we get our loved ones outta bed.

We feed them, we look after them.

They put them in the front of the television.

You know when it's really cold and people really feel the cold, you put 'em in the

car, you take 'em from the front of the house to the car and they are freezing.

You take people into a cafe.

At the moment, the heating isn't on properly, so it's,

I've got to be really careful.

There are very few places that I can take my mom out.

because places are so blinking cold.

, but nobody notices that we have total burnout.

We, we were running on our empty years ago.

We have got energy that we are pulling from certain parts of

our body, and we've got no , idea where that energy comes from.

And I know that my situation.

It's really not that serious in comparison to some people's, and I'm,

I was just gobsmacked that somebody said, I think you may need a little

bit of a break and we can talk about.

Costs and stuff like that.

And, and, and I said, look, my dad's in a care home that because of his aggression,

it's a care home where they can restrain.

Sorry, it's not a care home, it's a nursing home where they can restrain.

This person said, yeah, I used to work in that part of Leeds.

I know that place well.

And I said, so it's not plush, it's it, it's 50% nurses or more, you know that?

I said, but my mom's totally different.

My mum.

isn't aggressive.

Touch wood, , she's not touch wood.

Um, she needs somewhere pretty, she needs somewhere with lots of, you know,

with my dad, he has to be separated from other people because of the aggression

that he can feel towards others.

. But my mom needs a pretty place, you know, with lovely curtains.

With lovely bedrooms, you know, just for a little bit of pet respite.

Oh my word.

If I could have a weekend, a weekend where I stay at their

house, so there's nobody else there.

This is not to go out for dinner with anyone.

It's not to have coffee with anyone.

It is just for me to have two days where if I want to have dinner at 2:00 AM

in the morning, that's what I can do.

If I want to get up at 4:00 AM in the morning, then go back to bed

for a few hours, I can do that.

, but as a carer, we have to think about keeping people hydrated.

We have to wake 'em up early.

Even if they don't wanna get outta bed, have a drink of, you know,

Vimto, or a cup of tea or a banana or whatever, then let 'em go back to sleep.

Then it's just like, do you need the loo?

Supporting them, guiding them, advising them, helping them.

I know there's a lot of people you know who, , You know, if they forget

to get how to make a cup of tea, they forget how to shower themselves.

They forget how to go to the toilet.

We have to be there and present and helping.

And just the anticipation of when will they need to go to the toilet.

It's a task that none of us want to do or help with or guide through,

but it's a task that has to be done.

Cause if not, what happens?

and I just thought if I can get something once a month where I can have

a couple of days totally on my own, that you know that that's what I want.

So it is just about me and I just thought, oh my word.

That would be incredible.

So I haven't got it yet.

, but we're we're, we are taking steps in the right direction and, and

they said, is there anything else?

Said, well, it's really difficult, you know, I, I managed to get me and mom

in the bath, but then she couldn't get out and like, I couldn't pick her up.

And I said, the shower is over the bath, so she has to step over and

she's a bit worried about that.

And so I said, oh, that's something that we can.

and I just sat there and thought, is this what it should have been like two and

a half years ago if Covid hadn't have happened and put everything on its head?

You know, my, my dad could have had flu and ended up, yeah.

Every time an elderly person with dementia gets ill.

There's a real, real chance that it can accelerate the dementia to

the next stage or two stages along.

This is what I have seen, and if I'm perfectly honest, it sort of happened

with me, mom, me, mom hasn't had to go into hospital, but when she's had,

you know, she's had covid a couple of times as well, like so many people.

she's had, you know, tonsillitis that is, takes longer to get over.

And when I think about it, some of the things that she

could do before she can't now.

Like, um, my mom used to be able to even, um, you know, last year I remember

I had a little part-time job to get me out of the house that, you know,

it was to get me out of the house.

And I used to be home at three o'clock, four o'clock, and my mom

would get out of bed and she'd be downstairs and I'd left a sandwich.

I'd have left like, um, you know, drinks, I'd have left, um,

chocolate crisps, you name it.

And my mom would get up on the morning and she'd get out of

bed and she would dress herself.

You know, it might be in yesterday's clothes and stuff like that, but

she'd dress herself, wouldn't remember to brush her teeth or anything.

. Now my mom can't do that.

And if I think about it, you know, she had tonsillitis and after the

tonsillitis it was, , I have to go up and say, right, do you want to get up now?

Right.

Should we get your dressed then?

And it's reminding somebody, you know, to here's some fresh

underwear and like, here's.

Your trousers.

Here's a jumper and, and going to bed on a nighttime.

My mum will always say, oh, can I not leave these on?

They're like, no, we, we need to take these clothes off and we put this on.

She's, oh, it's cold.

It's cold, it's fine.

We're gonna do it really, really quickly and get you into bed where

her electric blanket's on anyway.

And it's all of these things that when we are doing them every day and we're

having the same conversation every.

About, no, we need to get change.

We need to put our nightwear on.

And in the morning it's like, come on, let's get these, get,

let's get these, um, clothes on.

And it's tiring.

It really is tiring.

And, and you know, 18 months ago, my mum could sort of make a cup of tea.

She could sort of butter some toast.

Whilst my mum may say, oh, I'll make a cup of tea.

She'll walk in a direction, forget what she's gone for.

Even if you try and help her, you know, she'll forget what

she's doing halfway through.

And, um, I, I just think that if she could go somewhere and feel some, go somewhere

where she felt as if she was entertained.

and it would be that you go in there.

So I can have a little bit of a rest.

And bless me, mom does say, you know, you need a rest.

I know I do.

Um, so I don't, well, you never know until it happens, but it, we wouldn't

know cuz it, it would be for a couple of nights so I could get a little bit of a

break, but I just suddenly thought, what would it have felt like over the last two

and a half years plus it's almost three years since covid . It, it's gonna be

three, three years and a couple of months.

Um, since that march when everything started to happen.

And if we think about it,

if three years ago, that support had been there to say, if we needed

any help for what's it burnout, how different would that have been?

And I, and I do think at the moment, the Alzheimer's, the

dementia, um, the lack of.

Support and the lack of places, you know, people have been locked in their house.

That's what's had to happen.

It's just been so hard now, and then I get this miraculous phone call

from, sorry about dementia review.

Okay.

I'll book it in and then I have a conversation with somebody who says,

yeah, we'll review this in a year, but if you need help just call me.

Which is quite incredible.

So this is to give you a little bit of hope that I think some of the world

is going back to as it was before.

I'm not gonna talk about a and e and things like that, but, um, I

don't what your GP surgery is like.

, but we've had a dementia review and I nearly thought, I almost thought,

let's just cancel it because we've never had any help from anybody.

You know, like what are they gonna do?

Um, that it was quite amazing the fact that we may have a mechanism to try

and get some respite so I can get.

A break.

Um, you know, every day we try and FaceTime my dad who can no longer talk.

He can't walk, so we FaceTime him and that's me keeping that conversation going.

I've got me mum as well on that call, and it's keeping the conversation

going for the two of them so they see each other just about every day.

This day is when I'm a bit too tired and then we.

The supporting my mum every day.

It, it's a bit of a challenge and sometimes, do you know

what if, if I could get that?

And it's not about going away, it's not about going on holiday,

it's not about being with friends.

No, it's about having respite is about you being able to get some energy back,

some time for you to sit, whether it's, you'd like to read a book, whether

you'd just like to watch television for 20 hours constantly, whether

you'd just like to be able to binge something on Netflix for a whole day.

Whatever you need to do, it is about getting the respite for you.

So I'd like to.

Just say that if your experience of any support has been nonexistent, maybe things

are changing at this moment in time.

I don't know.

I could, I, it may be that I get no help whatsoever, but I've had a conversation

with somebody who then put me in touch with two other people, so far, and it

was actually when I spoke to adult social services, said, oh, well there's not many

people in front of you for a, a review.

There's only three to four people on the list.

I was like, really?

So we could have a, an appointment, we could have a review, we

could have somebody making a recommendation, we could have a plan.

We may get some, I may get some respite.

And it was just , oh my word.

We're on the next little journey.

See, is there anything that could help?

And, and when I look back to, you know, with my dad, there was practically nothing

because his, his behavior just escalated so quickly after going into hospital.

He tested positive for covid, but the aggression that was

just there and remained.

was just alarming and I had to force things to happen cuz

I knew things weren't right.

Thi this really wasn't right.

Um, But yeah, so have hope.

Honestly have hope.

If you get the opportunity to go to your GP for a dementia review.

It wasn't with my gp, it was for some with somebody, and that is her

role within the practice to have dementia reviews with the individuals.

And, you know, I'm, I'm her carer, so of course I'm gonna go,

So if you have the opportunity, make sure you go as well, because you never

ever know what will come out of that.

And honestly, when I, when I had time to sit down on my own,

I cried, I thought on my word.

I may have some time this year in 2023.

I may have some time that I can actually sit and just be me and just go back to

looking after me for a few hours, for a few little hours or a couple of days.

I can just have that and I know how important that would be for you.

If you could get that too, and if you've already got that, I want to say well done

you and value every single moment that you have of your respite, because if we

can get a little bit of respite, it can keep us going until, until things may get

to the point where we need 24 hour care.

and then there's a whole, like, you know, some may stay at home, some may

have to go into care home, some may move in with you, some may, you know, we,

we, whatever is right for you is right.

There's no right or wrong in this.

It's just, um, it's about supporting the person, isn't it?

But I am gonna keep my fingers crossed that at some point I can

have a time where I lock that door on whatever night and then hopefully,

even if it's 24 hours, I don't care.

but if it was 48 hours to have 48 hours where I can sleep when I want, I can wake

when I want, I can eat when I want and not have to worry about caring for another

person who needs my support So much.

I wanna send you much love.

, and I want to say that this is a journey that we are on that

none of us have asked to be on.

None of us want to be on that journey, but we are, and with my podcast and

with any blogs that I may do, all related to my website is my Dementia

Road trip, and that's because I have been supporting two parents.

when I live 165 miles , away from them.

And I've been supporting them for the last eight or nine years.

And it's, it's been a challenge, but I love them to bits and I

never ever want that to change.

It won't ever change, but I hope things don't get too difficult.

Um, but this little bit of respite might be, oh wow, people don't realize, do

they, they don't realize, um, how much.

A night on our own could be.

Um, so let's see what happens.

I will keep you informed.

I really, really will.

But whenever you have, um, if you haven't had a review yet, a carers review, speak

to the GP and ask for one please honestly.

Ask for one because you are entitled to this.

And then somebody's got to have a look and, oh, it would just be amazing.

I steal hours.

I steal parts of days.

And always at the back of the, my, my mind it's like, right,

I need to be checking again.

I need to be checking again.

, and I know that's what we do, isn't it?

, but from me to you keep going.

You are doing an amazing job.

, you are doing it because you care because you are an amazing person

and because you are doing, everything possible for that loved one.

Who is there or loved ones for me.

Angela, provide Metro Road trip.

You take care until next.

Be kind to you and steal a few moments for you.

You take care.