My Dad Passed Away on Saturday 23rd July

Dad - Christmas 2005

It is with a heavy heart that I have to blog that my poor Dad, Ron Lawrence, passed away on Saturday 23rd July.

We had been away on holiday, getting back on Saturday 16th July and on the Sunday 17th, Mum said that Dad seemed a little unwell but they were monitoring his vital signs up at Silver Birches and these weren't giving any concern. However, on the Monday afternoon at about 3.30pm, Mum called to say that he had been taken over to A&E as his temperature had started to go up. I met Mum up at the hospital. He'd had a chest x-ray but it was inconclusive as to whether it was a chest infection or pneumonia. However, they were giving him a strong antibiotic in any case. He was moved surprisingly quickly up to Toronto ward at Chase Farm hospital in Enfield.


Mum and Dad's Wedding - 16th March 1957. Dad aged 26

On Tuesday 19th July, I decided to only be in work in the morning and got up there first at 2pm; Mum and my brother were going to get up there slightly later. I'd not long got there when a doctor asked to speak to me. Dad had not responded to the antibiotics at all which basically meant that his immune system couldn't get over the infection and that this was probably going to be his final illness. I must add ..... she wasn't as brutal as I've put it here! She was actually very nice and I am paraphrasing what she said! This was an enormous shock.
On Tuesday evening at 11.30pm, the hospital phoned me as Dad's oxygen levels had got very low. However, they said we didn't need to come up straight away but just to come in first thing on Wednesday morning. So, for the rest of the week, my Mum, my brother Paul and I went up the hospital every day from about 8am in the morning until about 7.30 - 8.00pm just to sit with Dad and talk to him and be with him. He did rouse a few times. On either Tuesday or Wednesday (but I think it was Wednesday) he roused and I could actually see that he recognised me; he has only done so from time to time over the past 6 months to a year. I can't begin to tell you what this meant to me.

The nurses and doctors on Toronto ward were brilliant. Nothing was too much trouble. They took a lot of care over making sure Dad was comfortable, turning him to prevent sores and regularly changing him. If we saw Dad screw his face up, a possible sign of pain, they were quick to give him a dose of painkillers. We also had several good discussions with the palliative care nurse so we were fully involved in what was going on and all the options at every step of the way. They also looked after us by bringing cups of tea. I can't begin to say how fantastic they all were.

Me (2 years old), Dad (30 years old), my brother Paul (3 weeks) in 1961

On Saturday 23rd July, we got into the hospital as usual at just after 8am and Dad's breathing was much more laboured. We played some music for him and I had taken in some smelly massage oil after a brilliant suggestion from a nurse and I was putting this on his arms and shoulders. At about 9am, I was mopping his brow because he seemed a little clammy and I can't say what caught my attention, but I alerted Mum and Paul that I thought something was different; his breathing had definitely taken on a different quality to it. We were able to tell him we loved him and then he took a couple of slower breaths, paused, then took another breath ...... and then he passed away at about 9.10am. It was very peaceful. I hope he heard us. We were obviously all very upset but I am so glad we were with him at the end.

It has all happened so quickly that it hasn't really sunk it, even now. Although Dad had Alzheimer's, he was still mobile and able to feed himself. He only needed assistance with toileting, washing and getting dressed. His biggest problem was that his ability to communicate was impaired which let to him getting frustrated and aggressive, things that he wasn't when he was well.

However, we just have to take some comfort that he is at peace now and has escaped from the horrible, horrible disease that is Alzheimer's. His funeral is this coming Friday 5th August. We love you Dad and will miss you. Rest in peace Dad.

XXXX

A Glimpse Into Alzheimer's Hell

On Saturday afternoon, as usual, Mum and I went up to visit Dad. The long stay NHS continuing care ward where Dad lives has three corridors coming off of the entrance area and at the end of each is a lounge. The patients can wander wherever they like although usually Dad is to be found in the Green lounge at the men's end.

However, on Saturday he wasn't there, so whilst Mum put away his clothes in his room, I went off to find him. I found him in one of the other corridors, trying to open one of the bedroom doors. During the day, the staff lock all the bedrooms, otherwise many of the patients would wander into the rooms and move possessions around.

For some considerable time, I have doubted whether my Dad really recognises me. He does recognise Mum however and, because I'm usually with her, I think he possibly recognises me as being someone he aught to know because I am with Mum. Whenever I wander off on my own to find him, I always wonder ...... will I get a glimmer of recognition even though Mum's not with me? In a way, it doesn't matter! After all, I recognise him! However, I do find myself hoping that he does.

As I approached him, in a cheery way I said 'Hello Dad. Are you OK?' You know, this 'cheerfullness' aught to earn me an Oscar .... but I digress!

He looked at me with an expression that I couldn't quite place. Was it bewilderment? Anxiety? Relief because he'd found a friendly face? I don't know. However, although Dad's ability to communicate is the one thing that is really failing, he quite clearly said 'Well, no in actual fact, I'm not'. Perhaps it was the expression on his face, I don't know, but all I could think to say was 'Let me give you a hug'. Dad hugged me so tightly it was as though his life depended on it. And I could have sobbed! Dad wasn't really a hugging kind of person when he was well ..... I'm thinking reserved Englishman here, from a time when men didn't show their feelings ...... so this was doubly poignant.

He then said something that I didn't quite catch. I think he said 'Thank you ..... I don't know who you are' ....... but I'm not entirely sure. My normal response to tricky situations is a flash of humour! It did occur to me to say 'Hope you don't go hugging just any strange women you meet that you don't know' ..... but I didn't. Not appropriate! I just said 'I'm Elaine, Dad. Your daughter. You'll be OK now'.

And I looked into his face and saw ..... fear? Yes, I think it was fear. He was now clutching my hands so tightly as though he thought I'd go and leave him.

'Come on Dad, let's go and find Mum. She's got some chocolates and fruit'.

He was holding on so tightly to both hands, but not in a threatening way, that we really weren't going to go anywhere. It really was like trying to comfort a distressed child. Eventually, I managed to just hold onto one hand and we walked back to his room.

Many times when Dad gets aggressive and lashes out, I have to confess to having felt angry with him in turn and to have felt that I don't like what he has become .... to actually not liking him! But on Saturday, I think I realised that when he gets angry and aggressive it is possibly because he is afraid and confused and, like a cornered animal, his response is to lash out. I have always wondered just how Dad sees the world; I guess I will never know. But the foggy world of Alzheimer's must be a frightening place and maybe I saw a glimpse of how Dad really feels and what a hell Alzheimer's can be.

In a way, I have written all of this so that, when Dad's behaviour when we visit is hard to understand, I hope I will remember how frightening and bewildering it must be for him and try to be understanding.

Frustrating Beginnings For A Campaign?

Is it a campaign? Hard to tell!

The day after the meeting on 13th January 2011 when we were told that they are consulting on services for Alzheimer's ..... but by the way, basically they want to close down four different units currently being run ..... I sent a long list of questions to the NHS Commissioning Manager that had run the meeting.

Basically, my line of reasoning is if we can prove that their rationale in coming to this decision is faulty, we might be able to do something to stop it happening. I have chased up this email several times now and on the 26th January I actually sent a few more questions.

I was promised by this chap's PA that I would receive answers by last Friday 28th January. Did I? What a surprise! No, I haven't!

Several other relatives have also been writing letters to the local Council as the local Council have just been consulting on a Dementia strategy for 2011 to 2016. Some of these relatives actually attended a meeting last week being run by the local Age Concern branch where this strategy was discussed. In the strategy, two of these units are detailed as though they are a fundamental part of their propsed strategy ..... but the officials present from the Council had no idea they were threatened with closure!

And today I read in The Times about the deplorable way in which mental health is managed in the UK.......

Dad's 80th Birthday Today

My Dad was 80 years old today. Mum and I went up to see him this afternoon. He seemed to like opening his presents, although cards seem to baffle him somewhat. I gave him an 80th Birthday card I bought from Joy who is a Phoenix trader. It's a really lovely card as indeed they all were. The inside of the card is blank so I made up a little poem for Dad and printed it out on paper as an insert, so you could almost imagine it was a very posh card :)

The poem is as follows:

Happy 80th Birthday Dad

In celebrating 80 years, we give thanks for your life,

For all the good things you’ve enjoyed with family, with wife.

For pride in always working hard, for football played so strong.

For always putting family first, helping if things went wrong.

Though illness clouds these memories, such memories make us smile.

They make us think of happy times, if only for a while.

So Happy 80th Birthday Dad, enjoy as best you can.

You are the very best dear Dad, never an also-ran.

With lots of love Elaine, John and James

OK ..... perhaps a little schmaltzy and they won't go calling for me to be Poet Laureat any time soon ...... but sitting on the train over the last few days, this is how I have felt.  
 
Dad doesn't look particularly well at the moment. It has taken seeing a photograph to actual 'see' that, which seems weird. You may, for instance, notice a bruise on his forehead as he has been having quite a few falls recently.
 
When I see how vulnerable he and all the other patients there actually are, it makes my blood boil to think how the 'powers that be' can make such arbitrary decisions about where they live without really caring at all. Well, I have decided over the last few days that I will fight their decision with every breath in my body. Though quite a few other relatives feel 'they will do what they like, no matter what we do', I can't let them get away with it without a fight!
 
So ........ I think I will start recording in my blog what goes on. This may not be 'Mauls Being Creative' in its original sense but I think we will have to apply a great deal of creativity in our thinking if we are to make them change their mind!

If You Know What's Good For You .... DON'T Get Alzheimer's Disease

So far in my blog 'journey' I have kept things quite 'light' and positive. I might even say, I have aimed for humour. However, I feel far from humorous since last Thursday.

I have not mentioned my Dad's Alzheimer's apart from an almost throw-away comment as the last line of my profile:

'Trying to cope with a Dad who has Alzheimer's'

Only those of you out there who have watched a loved one battle with this disease will even begin to comprehend all the misery that is in this line.

However, last Thursday afternoon, there was a meeting held at the Continuing Care Ward where Dad is cared for. Although it was initially described as a 'consultation' meeting to see how relatives want to see Dementia services develop in the Borough where this facility is situated, after some questioning it became obvious that the PCT (Primary Care Trust) want to close it down, along with another three Continuing Care Wards that they currently commission through the NHS Mental Health Trust in this area. To say this is devastating news is an understatement.

Almost all the guidelines for how to care for people with Alzheimer's will emphasis that you should keep change to a minimum. That you should keep things in a routine to help appease the agitation. I now fear for the well being of all the people they are threatening to move. For many of these people, a move will be an early death sentence. Yes, this could be described as emotive language, but that's how I feel at the moment.

What makes it all the more sickening is that it is not a private company, only interested in profit making, that has come to this decision. It is part of the NHS, the universal service in the UK that is supposed to provide care for anyone if they need it.

Developing Activities for Alzheimers Sufferers

In my profile, I realise I have an almost throwaway comment on the end ...... 'trying to cope with a Dad who has Alzheimer's'.

Sounds such a simple phrase, but it encompasses much heart-ache that would take a book to describe and maybe I'll explore some things at another time......

However ...... one thing I am constantly looking out for are things to engage my Dad with. In the UK, there is a definite lack of products aimed at people with Alzheimer's, although in the States I have found a huge wealth of things. Nevertheless, the shipping and any extra import duties make this prohibitive.

Still ...... something caught my eye today....

I always look at the Needlework News at Craft Gossip as it is a fantastic source of interesting needlework blogs and websites. Yesterday they had a link to an intriguing looking site called LilyPond. On this site they have all sorts of resources for projects that combine electronics and textiles.

Some of their ideas are really exciting! It's made me wonder whether it's possible to develop interactive wall hangings and other objects that might appeal to people with Alzheimer's?