Today was my Nans birthday

 

Some would say it looks like my Dad in a dress, but it is actually my Nan, promise hahah

I don’t remember a lot of my Gran, I must have been quite young when she died but she lived about 15 miles from us in a place called Ellesmere port. It has a charming name, but in my mind it’s also been a bit of a desolate shit hole. But still charming in that sense hahah.

My Grandmother and my Grandad.

 

What I remember:

Driving down the motorway past the Vauxhall car factory and what looked like an abandoned barn and always wondering about it. Then arriving at a little bungalow and hiding behind my Dad, with my head up his jumper so my head is covered and giggling as she comes to the door.

I remember the set out of the front room, kitchen and especially the garden. I couldn’t tell you how little I was but once I got lost in it and couldn’t see over the extremely long grass. It was a long narrow garden with only grass, and then the horrendous noise of the lawn mower was just terrifying, and I eventually found my way out, obviously.

I remember the bright yellow sunflower bed that was eventually moved into the front room. Anything other than that would after she died.

 

What I am told:

She would never eat her food and always tried the flush the sandwiches made for her down the toilet.

She would be so annoyed at the long grass she would try and cut it with scissors, until my Dad/Mum came around to cut it.

And she had Alzheimer’s. I was only little when she died, and thinking about it, maybe I do remember times where my Dad would try and get us to talk saying ‘Don’t you remember little Emily?’, but it’s not a firm memory, and I probably thought this was just normal for old people.  I was also named after her which I also love the thought of now I am older.

She would call my Dad and say she didn’t know where she was, and my dad would say ‘Are you sitting on a bed with a big yellow sunflower on it?’ and she would say ‘Yes’. To which my Dad would say ‘You are home Mum.’

 

 

I only realised this when my dad was in hospital and my 2 older sisters said she had it to, and it all fit into place. Now I don’t ever try to write about things I don’t know about, and I don’t know enough about the science of Alzheimer’s being in the family, but if there was an indicator that sits in my family, its right in front of me.

 

This also links with mine and my father’s relationship with graveyards. We would often pop down and put flowers on her grave, but we would also walk around and look at all the old gravestones. We would wonder about all sorts of stuff such as what it would be like in the time, why they had that verse on there grave, all the way through to the meaning of life and heaven and hell. Deep stuff hahah

 

But I was just reflecting on the last weekend I had with my father and remembered today is her birthday. I am TRULY shit with remembering birthdays, but my Mothers is tomorrow, and it has always stuck with me that today is my Grans. If I am honest I don’t even remember what I called her, Nan? Gran?

She was my only living grandparent, and very close to my father’s heart, and only now am I seeing the true reflection of that in both my relationship with my father, and how he tears up at the thought of his precious Mam. And so the cycle continues.

Please follow and like us:

My graduation- year ago today

I do love the On This Day feature on Facebook, and on this say in 2015, I graduated with a Geography degree from Kings College London. And the very one thing I was determined to do, was to get my dad to the ceremony!

 

Now you may think that would be an easy task, any Dad would love to see his daughter do this, but oh no it was a job and a half, but I did get him there!

Now my own memory is patchy but I will tell you what I  do remember. It started with me planting the seed over the phone, and going up north to make sure he was fully prepared and knew what he was getting himself into.  Dragged him into town and said “You are coming to London with me soon and you need to look very smart, and we are getting you a suit! Go straight to the sales rack and get him to try a few on.” Now he was a good sport, the guy in the shop was helping me and I picked him a rather snazzy suit, maybe because it was on sale, and maybe because I thought lets just go big or go home. It was a very shiny grey, smooth fancy kind of grey with a black trim (I have no idea the proper terms for man’s suit!)

Get him to part with his money and then we go straight over the road to M&S to get him some shoes. Now my Dad has always been a certain way, and I have always known to manage his moods, so we needed to be quick and precise. Picked up some smart shoes, put them on his feet before he even knew what was happening and he did like them on! BOOM shoes bought. Little did I know that literally a year later he would wear this very fancy shoes out walking on a wet Friday night, not knowing where he lived before he was hositalised.

 

Again, my memory is patchy but I don’t remember how he got down to London. He must have got on the train at Liverpool and me meet him at Euston to come back to the pub where I lived at the time. I had use of a small little flat above all for me which I loved, which meant my dad had my room and I was on the sofa.

 

I do remember trying to get up early the next morning and rushing to get us all ready. If I remember correctly I brought all his clothes down for him, to give him one less thing to remember and worry about. Then we come downstairs, ready to get the tube to the Barbican and Clare who I lived with at the pub took a quick photo before we left. Otherwise, I didn’t take many photos myself as I was always a believer in just being in the moment and enjoying it. But now my memories are fading and his are completely disappearing I wish I had a balance of that, but hey hindsight is a wonderful thing!

My mother and her husband were coming down, and so was one of my sisters and her husband, so we would meet them there, and I popped off to get my robe, fake certificate, and all that jazz. After the main bit of walking on the stage then comes the awkwardly talking to people you know and your lecturers with a glass of wine and a sandwich. I distinctly remember speaking to my favorite lecturer who was my dissertation supervisor, and my Dad just wanted to make a conversation, but he simply didn’t know what he was talking about and didn’t make a great deal of sense (really should of known at this stage too!). He kept talking about how he didn’t know how great the university it was, and prestigious and all that good stuff, and I must of just try to close the conversation down an move on, but I loved that he tried.

Jump to a few hours later, we have a family photo and then everyone starts to leave. He is going back to Liverpool that day and his worrying kicks in. I mean looking back at what he is like now, this must of been signs for us that maybe something wasn’t right, but he has always been a bit like this, and you just try and manage it through the day, day by day, and just consider that a win. At this stage, I was just so happy I had managed to get him down, but he started with his usual routine of saying we need to get to the station for his train. His other daughter and husband are there that he spends no time with and trying to force that just was not going anywhere and he was just getting agitated. So they left, we had tried for as long as we could manage (and he could manage.) To then make a point we hopped in a black cab to get the station, and it was at least an hour early.

So we get the station, he has his stuff and it kicks in that we are here so early and I am annoyed. He becomes super apologetic and soppy,’oh you know I love you don’t you.’ Now I wasn’t being a bitch, I just kept making my rational point of you never spend time with us, and we had hours to get here for his train. And that was it, he went home and he made it to my graduation.

When he went missing that Jan weekend of 2016 a year later, it did cross my mind that he had left his normal walking shoes in the corner and somehow grabbed his posh shoes. Which are so much harder to put on (I had to help him for my graduation) so he must of not know and be so disoriented that he went without his coat, proper shoes, keys, and phones to walk around town, and then didn’t know where to go back to. And that brings us back around to a story I won’t say again.

Going to Kings was one of the greatest experiences I was so privileged to have done, people said don’t move down to London, its expensive but I love it! And I will always remember that I dragged my Dad down for such a key moment in my life, and call me selfish but I don’t regret the work or his rattiness at all. It happened 🙂

 

 

 

Please follow and like us:

Christmas Eve 2017

I get there a lot later than I want, but that’s life. And if I don’t write this now, I will forget everything.

He was having dinner, and he knew my face but not sure he knew must else at this stage, but that is an assumption.

There were 2 other people visiting someone else and he was certain they were police, and all he could talk about how they want to put him in prison, and they can do, he just doesn’t care. To be honest, there was no real difference, he has always thought like this, maybe just not of been so open about his thoughts, and talked about it for so long. But that’s what paranoia gets you.

I made sure to drop in where I naturally could that he is my father, and I am his daughter, so that if he wasn’t sure, its a gentle reminder for him. Towards the end, he got there.

As it was dark, we sat in the front conservatory bit, and every second sentence was asking how I would get home. He wants to walk me home, he keeps repeating:

‘I know where I am going, and what I am doing you know. And I walk a lot, that’s how I keep fit. And in the dark, I want to make sure you get back ok.’

‘I would feel a lot better if I knew you got home ok, I can walk myself home you know.’

So I would make light of it, change the subject and say I would feel better with him staying there. Towards the end, he would say, ‘what kinda father would allow his daughter to walk home in the dark.’ to which point he lost his rag, and I knew there was no entertaining him.

I knew it already, an it was worth a try, but there is no staying past dark, he just won’t allow it.

And whenever I visit he will just try and get rid of me, but I tried, and I will see him tomorrow.

Please follow and like us:

Christmas with my Dad

I have not spent a Christmas with him since I was very small, and even then I don’t remember much either to be honest.

One of the things I do remember is taking him a Christmas dinner on boxing day and that was about it.

Now before my Dad got his diagnosis, he volunteered at a placed called The Misson. I am not sure how to describe it as a place, but it does amazing work for the poor and homeless in Birkenhead and is very close to my heart. He would drive the van and pick up donations or help drop them off to people and families who need anything really. Along with that, he would pick up people for their big Christmas meal, with something like 200 people that go (I think) down in the rugby club or somewhere similar.

This is a picture I found above one of the doorways in The Mission from a previous Christmas that nearly made me cry. I just stopped in when I went in there once after he had moved down to Kent and couldn’t believe it <3

That was his community; he loved it, he was social, had value and got a huge social Christmas meal with all his friends. Which if I am honest I may be a little jealous off ;). It wasn’t all rosy mind you (when is it ever, let’s be honest) but it gave me peace that he was having a great time, so I didn’t feel the need to get involved. And I just hop around great family and friends for my Christmas.

But this year I want to spend some time with him, and it will be our first proper Christmas together since I was maybe 7?

 

What am I expecting?

I feel like I have a good handle on what his moods can be like, we can squeeze a nap in there too, but other than what he is usually like, I don’t know how Alzheimer’s is going to play its part.

We have never done presents either. I remember trying to get him things for Father day and Christmas and just struggled a bit, he didn’t even seem to care really, he doesn’t like the idea of being made a fuss of. But I always know if there is anything I needed in the year, he was my go-to for anything. So I don’t need birthday or Christmas presents as I get everything need and more throughout the year, and Christmas is so much more than just the presents.

So I have bought him some CDs in the hope he can have some variety of music to listen to, and with four complications of 5 CDs each, there should be some music he likes that will stick. And I will make sure to open something with him, so it’s not awkward and makes it a little more Christmasy.

I know he is better in the morning and grumpier in the afternoon/evening (who isn’t). And it’s been a long time since I spent four days consecutive with him. I want to go to church with him if I can, and just see what he is like an how things have changed over a more extended period. He always tries to shoo me home back to London whenever I arrive, but in staying in the same village, he might be a bit calmer about it all.

I think I am going to be shocked, or maybe just more things revealed to me about either how good or bad his memory, functions, or moods are. I will try and film as much as I can, but I still want to make my own very natural memories with him, I never want to force anything and make things uncomfortable.

 

The big question is will he know me and my relevance?

My guess is he will know my name (sometimes), and he probably won’t know I am his daughter (most of the time). And of course, part of me wants to ask him these questions, get it on camera, and be up front like ‘Do you know my name? Do you know who I am?’ But that’s just the morbid part of me that like the idea of picking at scabs and just seeing what happens, and it just makes things worse. But that would only be forced, and ignorance is bliss, right?

So wish me luck! If anyone has any ideas of activities or things we can do, I have not planned the time at all; I would just be happy even being in his company for the holidays, so let’s see how we go.

If anyone who reads this knows him, and wants to wish him a Merry Christmas I would be more than happy to pass the message along, and even try and do a little video message for you! Now that would be interesting …

 

Please follow and like us:

Dementia update – What changed

So dementia is a progression, so what changed?  Let me update you.

The other day I had a little photoshoot with Lottie Poval Photography, and she was brilliant all day and let me and my dad do our thing and just took part and get some lovely photos as we went.
But I did notice a few things that were different this time around that I thought I would point out and this photo does a great job of illustrating my first point.

 

On the beach with Father collecting stones and shells. He has his room key around his neck and his cheeky little face as always.

 

 

His paranoia means he says that some of the staff are police and he wants to be able to have his room private. The care home then gave him a key to his room which was brilliant, and where that made a slight difference, it doesn’t lessen the feelings of paranoia around people going into his room and having a good rummage.
Off the back of that, he is always so keen to lock his door whenever we leave his room and this time he forgot. Sounds normal I know but it was a bit of a moment for me as his paranoia has always been such HUGE part of who is he. So with a gentle, ‘do you want to lock your door?’ and he went oh yeh and grabbed the key from around his neck and locked the door. And you can see this key attached proudly around his neck using shoelaces.

 

How you will always find us, and continue to find us, arms linked and out and about. The journey is a long one!

 

 

Another thing we do a lot is use his phone, and he always has it on him. When we first landed to see him I didn’t think twice about it and I usually pop on his phone to make sure he can make calls ok and all is well. But we get halfway through our walk and I say ‘oh let’s get your phone out and you can take pictures too.’ But he didn’t have it on him. And he always has it on him, even if he doesn’t know which pocket its normally in.

 

What does this say to me?
The obvious. That his Alzheimer’s is long and progressive, taking what might have been commonplace for him and taking that away. What’s still there is it’s my dad, his personality and humour. He still has a good time and we try and keep things as independent and fulfilling as possible because it is possible to live well with dementia.

Please follow and like us:

Happy Birthday Father! 74 today

Look at this little cheeky man’s face!

I am shocking at remembering birthdays, like truly. I am awful at buying presents and always forget for even the closest people to me.

But my dad’s birthday is always one I remember, even if I don’t get a chance to do anything.

In the past, I have tried to do something for him, but he never really cares. We never did Christmas presents, even from when I was little (between him and me that is).

So one of the things you learn growing up is how different everyone’s history is and how it shapes them as people. So today it thought I would give a little insight into our relationship over the years.

 

Why do I call him father?

When I was little, I always called him Dad, but the only time I can think of any real change in me calling him father was because it just suits him better! He is 74 today, and it sometimes feels a bit weird to call him Dad.

Dare I say same for my mother (will be interesting got see if she reads this too) But she isn’t a spring chicken, and she used to hate being called Mother so of course it has stuck 😉

 

 

Was it a ‘typical’ relationship?

No.
Well, not from the bog standard happy family viewpoint (that’s whole other debate). My parents divorced and rightly so, but my father is no saint. And paranoia is not a new thing for him.

Let’s just say he always has Paranoid, to a medical standard, that was my norm and I know how to deal with it.

 

Does it matter?

No. not really.
He is still my father, we have a relationship, even if it gets turned on its head and continues to do so. And even with all his many flaws, I love him truly.

So happy birthday Father, and here’s to the years to come!

Please follow and like us:

Learning the hard way – Talking to someone with Dementia

Learning to talk to someone who is living with dementia if you don’t know already can be a minefield. But I also think it should be something EVERYONE should know about.

No one is perfect when it comes down to this, myself included but it irritates me when I see supposed professionals not even trying!

There is are a couple of great blog posts at the end which can say it far better than myself, please do check them out below. But here are a few key points I would summarise or add to this discussion with examples:

 

1. Do not talk about the person like they are not in the room.

‘Oh yeah, John Doe often this, that and the other.’ And he is still sitting right there. Even if that happened to you right now, and they were talking about you as if you were not there, didn’t acknowledge you at all, you would be pissed.

It’s exactly the same for them. They may not be able to express themselves in such a way that answers your question, or even care, but include them.

The example I have was sitting down with my fathers minister after he came out of the hospital and trying to explain to him he has Alzheimer’s, telling him this is what happened and how he is affected. How can you have that conversation with my Dad sitting right next to me without being disrespectful? On top of that, he will not acknowledge he has any kind of issue. So I went along the lines of:

‘So what happened is that, that and the other, isn’t that right father? ‘

‘And me and you did this together …’ (addressing my father)

‘Also sometimes you can forget the odd simple thing (addressing my Dad), and it’s just something to acknowledge and roll with and help where you can (addressing the minister). It’s not a big matter but…’

 

2. Do not say ‘I just told you that’ 

Or ‘Don’t you remember you just watered the flowers in the garden!’

‘I just told you my train is leaving at 5’

Patience is a virtue and I just try and either say it again or distract or inform in other ways. He has just watered the flowers in the garden 3 times already in the space of half an hour. I would say, ‘Why don’t you show me all the different kinds you have here?’ Or ‘Why don’t we feel the soil to see if it wet or dry?’

If I say ‘But Father you have already watered the plants 3 times already, let’s just leave it and go out.’ He will be in a mood for the rest of the day and say, ‘Why didn’t you let me water the flowers, now they will die.’ There is no telling him any different (for as long as he remembers, and sometimes they will surprise you and remember it longer than you wish 😉 hahha)

 

3. Don’t start sentences in such a way you are expecting a solid answer.

What I mean by this is ‘Don’t you remember this, what was the place again??’ because it puts pressure on them to remember something they really might not know, and might not remember. Isn’t it the most annoying thing in the world for example when you have an ear worm and you simply can’t put your finger on the singer or name of the song? I can only imagine its like that but worse, like how many children you have :l

 

You can never tell if someone has dementia just from looking at them, but you can never know when these ideas can come in handy, so just keep them in mind when you can and the situaution or conversation will be better for it.

 

Give these blogs a go too!

https://www.theguardian.com/social-care-network/social-life-blog/2017/aug/09/losing-marbles-what-not-say-people-dementia#comments

20 things not to say or do to a person with dementia

Please follow and like us:

And the phone calls are back!

I am relieved that he is showing signs of being able to use a phone again?

Or is it the mean of me because he is frustrated not being able to answer the phone?

As I am typing this I can literally hear him say the numbers as he thinks he is typing on his phone ‘Emily, 1, 2, 3, 4, 5, 6…’

And I am sat here saying as many variations of things as possible, like ‘Hello, father, can you hear me? ‘ and ‘Cooieeeeee??’

So I take that back, I am sad he is calling me again because as I say hello down the phone as loud as I can in the office he really can’t hear me. It’s frustrating for us both.

There’s no rule book here, and it will only get worse, but is this a good or a bad sign? Its been months since this has happened, it used to happen several times a day?

-PS this is my LITERAL thought process over the last 5 mins, from brain to blog in 10 mins flat 😉 –

Please follow and like us:

Its so easy to see people through their illnesses…

Its so easy to start to see people through their illnesses and this time, even though I know him, my dad surprised me.

That cheeky face of his though!

I always try my best to not to speak to him like you speak to the elderly or small children, because he isn’t there yet, even though sometimes I can tell he might struggle with my speed or to understand what I said (because I only assume it takes a while of it all to sink in for him) I still try and talk to him like you would do a normal adult.

It was a summer garden party in the care home, and I knew already he wouldn’t want to go but me and Elliot went down (little later in the day than we would like) to see him so that even if everyone else and their family were there, he wasn’t just by himself.

It took us an hour to find him. An hour. He is still so independent and was off out and about, and to add to that he can’t answer his phone. It’s because if the fancy way you have to slide buttons over or to the centre to answer, not a simple button (that’s another rant for another time.)

Now I do have to track on his phone, that’s also another story. But we were trying to follow this tracking for an hour and let’s just say it clearly didn’t work as he was never where the gps said he was eventually I had seen he must have got on the bus and got off by the coast, so we hot footed it down there and there he was walking down the beach.

I also have this uncontrollable urge to just hug him and squeeze his face super tight, especially when it has taken me an hour to track him down!

He said he was not bothered about the party which started an hour ago at the home so we went for a litte drive up to the military graveyard at the top of the hill which we went in our second vlog. Furthermore 3 people in a 2 people car is a debacle so it was a bit of a taxi service, but the view of the bay was astounding in the nice weather. We then had a bit of a walk but said we will have to go back to the home now.

The get to the point of where he surprised me, we got to the home and sat in his room for a bit but we said why don’t we go outside. He kept making the point that if people want to sit and get drunk let him but that’s not what he does. We sit ourselves down and everyone was like ‘oh John! Lovely to see you, how have you been? Enjoyed the day?’ And he was the life and soul of the party from that point onwards. Working the crowd, making jokes, making sure he spoke to everyone and that they were ok and then came and sat down with us.

It was so nice to see, and as much as he might be anti social with me sometimes, he does love just being with peoples and the banter, and it very memorable. I say anti social with me because he will let his guard down, and tell me how he is feeling, and it’s not always the cheery happy John you see when he is with other people. But I am so thankful he can be himself with me, and always has been.

It made me realise one thing. As much as I would love to care for him, he still has people around all the time where he is, who he can talk to and be with and if it was just me and him it would be the constant effort needed to make sure we are both social and out and about with company. And the home he is in is great from what I can see, so I am happy about that as there are so many which are just awful 🙁

Oh and he has never really acknowledged Elliot, I have never said we are together but went around saying ‘ yeah I have just been out with my daughter and her boyfriend.’ As he would say, he isn’t soft ;p

But it was just lovely to see him do his thing, make people laugh and just makes you realise as much as he is slower with certain things in not understanding and stuff like that he is still the same old John, and he can work I room I tell ya 😉

Please follow and like us:

Reactions

I went to a vlogging event the other day, I never got the chance to write about it then and there but it was VERY interesting thinking back on it to the reactions to what I say my channel and blog are about.

Why do people blog anyway?

Why would someone go all that trouble to put their lives on the internet through a blog or videos? I can’t answer for everyone of course but for me, it started when I like being nosey at everyone else online through youtube, I love having a good nose because who doesn’t.

Then I realised my dad had Alzheimer’s and started spending a lot of time with him. Spending more time with him just made us closer and at least I feel like we turned into a little double act, days out and seeing his behaviour and memory decline.

I wanted to be able to record this and seeing the reaction from people out and about to him, was a whole mixed bag of emotions. So I really wanted to make my own little impact to address both those things. Document for me and if I can help shine a light for others about what Alzheimer’s is, all the better.

So what happened when I tell people?

 

Blank stare – What does that even mean? lol

When I was at the event, the main thing is a bit of a blank stare.

-normal beauty blogger kinda person- ‘So what do you blog about?’

Me- ‘oh, my father has Alzheimer’s and I try to vlog with him.’

I mean bless them what do you say to that? In which case I know it may sound a bit awks so I make sure to reflect it back onto to them. ‘What do you blog about?’

 

Understanding and justifying

Some people seemed, well I wouldn’t say excited but did see what I was doing. They would say ‘Oh that’s really cool’ or ‘yeah I get that, that must be really interesting’. And then it was a bit of a conversation killer. A few of the girls were actually really nice, we actually had a conversation about it, a little more than a sentence or two but it was still clearly something that was uncomfortable for them and not something that lines up with that they do.

 

Sad realisation

In reality is it a very sad thing that is happening to my father and in turn the effect on me. And it’s a downer, I can be a Debbie Downer. But I assure you I try my best not to be, it’s more the topic, not me is a very sad thing

 

 

So what’s next for me?
So in relation to all this, I want to be able to show the diversity. I can’t just have all my spare time and my interests being surrounded by this one very sad and important impactful part of my life. I am a normal girl living in London and other things shape my life.

So when it comes to content you see from me, the most important content to me will be about my Dad and Alzheimer’s. But there is more to me as a person and what I can create that is also important and also shapes me and my time. My faith with is of vital importance to me and my father. My travels, food, friends, and documenting all the ups and downs that go along with that.

So if you have got this far, get ready to see more from me 🙂

 

Please follow and like us: