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 …

 

Nov Edit 2017

Can you spot him?

So November as basically been and gone and I haven’t written any of the blog posts I have wanted to, and so much has happened to me and in the news for Dementia.

So let me give you a rundown of Nov:
– Got a job in a pub didn’t I!
– Got another full-time job as well!
– Late night visit with the old man
– Sophie Hammond came down to visit
– Nottingham to see Menekse and Ken Costa
– Ice skating at Tower of London

 

So let’s get started with jobs stuff, shall we…

So for all who are in the know, the last six months job wise has been full of ups and downs! But I was made redundant in a job I had just started and loved. And so the Netflix marathons, late nights and cheap bottles of wine ensured while I was enduring the roller-coaster that is applying for jobs, interviewing and the endless call from recruiters.

To eventually get myself out of my PJs and into normal clothes with an excuse to shower, I decided to get a job in a good old pub. Not a fancy cocktail bar or a restaurant or anything, just a good old pub. And I managed it, but it was still a little of a shock to my system.
I go from business trips to Paris to cleaning up fag ends in the beer garden. But I do enjoy working in a pub, I have always found I would rather work at an event than be at one and still sympathise with whoever brings my food over wherever I eat. So I am working in a pub, and decided to keep it going during my full-time job.

Call me crazy, but a lot of the time the pub doesn’t feel like work. And the extra money is always helpful. With doing a lot of travelling for my dad and always put a value on experience rather than money, and this has put in red at the bank like every other person who lives in London. So its time for me to learn the lesson of hard work and sacrificing more of my social life to get a little more money in the bank and gain a bit more of work ethic.

Which bring me on to my new full-time job 😊 I am now a project manager back at a publisher, and I love it! In adverting but not selling it and on the publisher side I get to have lots of input, and I am chomping at the bit to hit the ground running.

 

How is my Dad doing?

Our fave graveyard as the sun sets over his little village

I did try to film a little, so there may be more to come, but we (being Elliot and me) rented a car and drove down to see him. I was a little later than I usually would be as my father can typically be better in the morning than he can be in the evenings. But we rock up and go for a drive to all the different scenic points around the area. We watched the sunset above the graveyard we always end up at, and saw the lights of Folkestone and ended with a good old fish and chips in the only café that was open on a Sunday night.

Sunset over Folkestone Harbour

 

I could just sit there an watch him eat all day. Weird I know but he was umming and arring about food so I order him the fish and chips as he will eat it and get some peas into him, so he is at least getting his greens. But he tucks straight into this fish, and I just can’t describe the feeling of overwhelming love and protection for him that I just want to scoop him up and watch him eat fish forever hahaha.

Overall his language skills are getting worse, he might not be able to complete a sentence or will get words mixed up, but on the whole not much else of a change there, still his usual self with Alzheimer’s thrown in there for good measure.

 

All the feels with friends

So I had my old roomie and bestie Sophie come down to visit, for lots of reasons, some not great, but she got the great privilege on sleeping on my sofa bed and sharing my company most nights. It was so lovely to have her back, and it was just like it was back in the day slipping right back into old habits and chats and realising how much not keeping in touch was a bit shitty. So I need to make an effort to stay in contact even when we are on the other side of the UK, if not the globe. I value Sophie so much as a friend and was at one stage very close to her, especially when we lived together when my father was diagnosed. Leaving it so long in-between talking, I forgot how much her option means to me and our friendship and never want to lose that. Also, I would never be able to say this kinda soppy stuff in person, so ill leave a blog post for her to find 😀 (Also happy birthday! – see I am such a shit friend lol).

Elliot and I (is that the right English? Lol) went on a little trip up to Nottingham to see my other bestie Menekse and her husband, Andrew. I knew Elliot was going to love their house, and Dougal the poodle and its love to have a nice catch-up, and let Julie (Menekse mum) do the grilling and get to know Elliot a bit more. They really are my second family, and I love them all dearly, except for Meric. Ish. HAHAHA

I mean look at how beautiful their house is!

We also popped up because Ken Costa was speaking at a local church. And I won’t go into detail but I wasn’t that impressed. If you want to know more comment below and I’ll let you know.

And to top it all off I went ice skating at the Tower of London with these lovelys as it starts to get very festive!

So I have had a great little month with lots of news on every front. But last but not least, let me make a quick record of what I am going to dub mouse-gate. Let’s just say it’s a big old house, and there where serval mouse drama I think we have sorted! Hurray 😊

So let’s see what next month brings in the way of Christmas, New Year, a new Christmas work party to navigate and not forgetting my 26th birthday. Pressure is on Elliot 😊 xx

 

Oct Edit 2017

What has happened in the month of Oct! A lot, and let me tell you all about it!

So I have had a bullet journal now for nearly 2 years, and as much as I try I can never use it properly every day. But one of the things I really enjoy is looking back through and seeing everything I did, the ideas I had and it has all the important information in one place. So why not take it a step further and write a blog all about my month!

 

Elliot’s birthday!

So he turned 25 and we have been ‘dating’ for a year now and I wanted to do something nice. In the spirit of it all I had 2 weeks of surprises for him, with a different one pretty much every night. He would take a card to work with a clue in it to where to meet me and by what time he needed to be there.

There are far too many things to cover, and really it should be a blog post for each of the events in and of itself but here’s a quick overview for you below:

London cocktail festival and all-star bowling

 The first night of all the happening and probably the most jam-packed and fun! I mean this is only a small selection of photos. London cocktail festival has a village at Spitalfields market and we made the rounds and got a few cocktails there. then off the cuff went bowling and ended in a bagel! YES 😉

See the play Prisms at Hampstead Theatre

This one was a bit of a killer. Such an eye-opener for how some people with dementia see/hear and feel things which I am not going to lie left me sobbing! Here is a good review to give you more of an insight.

Dinner at Lobster and burger

Popping his cherry for lobster and of course more cocktails for London Cocktail week as it would be rude not to!

National Theatre to see St George and the dragon

This one was interesting, the way the stage moved was up there as impressive but while the idea was cute and thought through it was a tad off the mark in my opinion. And the fact I thought the stage was one of the best bits is telling … Heres is what someone else thought about it!

Alternative dance piece about maps at the Kings College London

I have no words. Just click here. Or watch below.

 

Terrarium making workshop on Columbia Road

Elliot found this one a little stressful just to try and catch up! But it was fun to get my hands dirty and now I can’t stop looking at it waiting for it to grow more! And I can’t stop scrolling Geo fleur Instagram page! I just want plants coming out my ears, thanks 😉

Weekend away up to Liverpool

The photos of this one maybe TOO much for this post 😉

Edinburgh fridge award show in Convent Garden

Elliot doesn’t stop banging on about how I need to go this year, so I served him a little bit of it in London instead, and actually quite enjoyed it! Time will tell if I go to the real thing or not 😉

As you can see a few of these things are just a sneaky way for me to do something I like too (all ladies take note haha) but it was a really nice two weeks where we felt we made the most of the time we had free and pushed ourselves to do stuff we wouldn’t normally.

In the middle of all this, I also had the pleasure of going to see my Dad with Lottie and take some lovely photos. Here’s another sneaky peek into another few we have. And a picture tells a 1000 words right? What do you think?

There were a few other events in there thrown in for good measure such as going to St Pauls Cathedral for Souls at Stake: Tyndale, the Bible and the 21st Century. Very interesting indeed! There is a link for a video of the night above too!

The Trans-Atlantic jazz night back at KCL arts and humanities festival and a house party was thrown in there for good measure. That you can see at my Instagram over there >>>>>

And to top all that off I have had my girls Jenny and Beccy down for the night. Had a timeout in eat London with my second brick lane bagel of the month 😉

 

As you can see October has been a fab month, there has been so many things, so I hope you enjoyed having a nosey! I can assure you November is not going to be like this one!

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.

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!

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

Herbert Protocol – you NEED to know about this

Just seen this and I think it’s a brilliant idea! Please check this out if you have a loved one that would be considered as vulnerable (especially with dementia), and maybe a bit of a walker!

I have in the last 3 days seen at least 3 different news articles about men with dementia that have gone missing and it’s so important to be sensible and prepare for these kinds of instances.

As my father still has some independence, and how his diagnoses came about when he went missing for a night. I will certainly be filling one of these out and sending it to his Home.


-Why is it called the Herbet protocol?

It’s called the Herbet protocol after a war veteran George Herbert. I tried to find out more information about him but it looks like he died while tried to look for his childhood home. And the exact reason to have something like this set in place, and what a way to honour him having this protocol named after him.

 

-What it includes

Background information about name, do they have a GSP tracker?
Physical description
Medical history
Life history such as favourite places and tracks to walk, how they like to travel and how well they can walk etc. 
Family info and contact details
Missing now section for when/if they do go missing

It also says to include an up to date photo which is a very good point. I only say this because there is hardly any photos of me and my Dad before his diagnoses.  Make sure you make record of the times you have together and have a recent photo not one of them looking 10 years younger. Both for them and for you.

 
-Why does it matter?

The stresses of trying to think of everything in the heat of the moment is a real thing. The accompanying information and documents do say ‘It can be completed in slow-time’ meaning we should take our time to fill it out to its most complete.

It is the most heart-wrenching experience to realise your love one is lost and couldn’t have any idea where they are, what they are doing or how to get safe. Anything we can do to be prepared is helpful and necessary.

 

-Reservations about the whole thing?

Will it even work? Can it be given out too soon?

Can it be given out too soon? Can it be called too soon that he is missing?

Can it be called too soon that he is missing? Should we call him missing once we have looked in the usual places?

Should we call him missing once we have looked in the usual places?

How far should we look and how long a time when they clearly missing? My fear is maybe the home with this information may be premature?

My fear is maybe the home with this information may be premature?

Personally, I would want to be known straight away as probably one of the only other person who goes out wandering with him and knowing where he likes to go. What I wouldn’t want is the home to take it to there own hands as there might be light I can shed. But then again I guess this is why this is in place and so important to be filled out!

 

To see the official post by the Met Police with further information and the copy of the document for you to fill out yourself see below:
https://beta.met.police.uk/notices/herbert-protocol/

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 😉 –

Alzheimer’s + Dementia in the news… Missing Grandfather

So I see a lot of stuff in the news, so I thought I would put my 2 pence into the equation and talk about it, start the conversation on what is being put out there, helpful or not.

Picture taken from the is the original article from ITV below:

http://www.itv.com/news/granada/2017-08-09/police-search-for-tameside-grandfather-who-has-been-missing-for-two-weeks/

Now, this would be my worst nightmare.

My heart fully goes out to everyone in this situation.

And I really really really hope that he is somewhere safe.

2 weeks is a very long time. From what I see in the news this one is up there being one of the scariest and very realistic nightmares for anyone, with dementia or not.

This man is the age of my father and rings true for how he ended up in a hospital, thankfully it was over the space of a night and not 2 weeks.

What I want to know is what are the police actually doing? There must be SOME kind of lead out there via CCTV or his usual places. I would assume they have checked hospitals, night shelters, but what actually are they doing?

Also, why is he described as a Grandfather? He must have a child to have a grandchild, is it to pull on our heartstrings, because it should pull on them anyway!

In the video, it looks like he is walking a dog, but it’s not mentioned in the article. I would have always thought people more often than not can recognise dogs at the very least. An old man walking down the street is one thing, but with a cute dog? Maybe that’s for more of a dog person way of thinking but I am just so shocked, and actually horrified this man hasn’t been found 🙁

Now reading between the lines this brings up questions that anyone who is close to someone with dementia will have. Can it be safe to let them still live their lives independently? This man has probably walked that way so many times before, with and without dementia no doubt. Should we be locking people away for their own safety? Or always with them just to make sure they are ok?

People with dementia are still people, and I know from my fathers experience in an EMI care home it was heartbreaking to hear how truly angry and depressed he was for them not letting him go out even for a walk by himself, or in the garden without someone with him or looking over him from the house. However do not get me wrong, I can see every reason why he shouldn’t be left alone, but is there a middle ground?

You can never actually tell on first glance of someone if they need extra help or guidance in some way as it’s an unseen illness which just makes the whole idea even harder to grapple with.

Should this be an example to family members to be tighter with their loved ones on their independence, or should we sadly take this as what will happen, and on rare and very sad occasions turns into a situation like this?

Seriously I want to know what people think about this, it’s a hard one!

 

 

 

Mini Oxford Trip Vlog!

I am currently in Paris with work, and thought whats best to do with my evening other than edit videos 🙂

And I completely forgot about the videos we took on our way to Shift which was the weekend directly before I started this Job.

Myself, a few of my house mates and Elliot all rented a car to come to this festival, but in renting a car we wanted to make the most of it and stop somewhere.

So feel free to check out what we got up and some of the nice bits of Oxford. It was a fly by visit, no longer than 2 hours and then we headed off to Shift!

The plan was to vlog shift, but as it was my first time going I didn’t want to try and vlog to much, as I would have to use someone else’s phone and I would rather just get stuck in and enjoy my time. But it was a brilliant weekend and I will definitely be going back.

And this is also my first time trying Imoive 🙂 So be nice yeh!

With my new job which I love, I have been given a work Mac Book Pro and also I have so far spent as much time in Paris as I have done the London office. I am so thankful for how my situation has changed! I read a cheesy line somewhere that the Lord only takes away to give then go and give you more and better (or something along those lines). And it couldn’t be closer to the truth.

So enjoy our little escapade before Shift and keep your eyes peeled for more Travel footage from Portugal coming VERY soon, once I have mastered this Imoive malakary…