The ‘Nursing’ Home Part 1 (Written by Denise)

When you are faced with the reality of your actions the doubts come flooding in.

Could we have managed Dads erratic behaviour for longer? Where there any alternatives to a nursing home? Were we being selfish in our own need for a ‘Solution’?

By WE I probably mean MUM because she was the one dealing with this situation on a daily and nightly basis, we could visit then go home but poor mum was home and some nights she shared her home with a devil. It basically came down to a simple choice, mum coped till she gave out, which would be totally unfair as she was still a lively 70 odd, or dad was placed in a nursing home and mum got part of her life back. I say part because although the physically exhaustion would improve the mental anguish would not.

In an ideal world, a one that acknowledges the immense problems faced by those caring for someone with Dementia, then maybe there would be the help and supported needed. Real support not the haphazard, disjointed and often funding driven support available now.

The truth is though that for the best part carers are given no help or even advice. It is a steep learning curve and they’re very few experts to show the way.

I have thought long and hard about my Dads illness and our management of it. I have been filled with self-doubt and guilt. Yet I know that Dad would have agreed with our ultimate decision to place him in a nursing home, had he been able to.

The problem wasn’t that he was in a nursing home, the problem was the nursing home he was in!

Even the phrase’ Nursing Home’ can conjure up images of elderly residents sitting aimlessly in high back chairs in large day rooms, the chairs placed along the walls facing the centre of the room. A literal waiting room, waiting for the inevitable – Gods waiting Room. On this Willow Court did not disappoint.

In truth we probably buried our heads in the sand, we hadn’t dared to look seriously at the care homes available in our area, so we had no idea what to expect. On reflection I wish I had taken the time and checked out some care homes, I had been very pro-active when looking for schools for my children. I had visited a few in the area and spoken to the head teachers, this was of course pre Ofsted Inspections, but had they been available I would have certainly read them in detail.

So here we were in this god damn awful situation. You would think that it would be easy to just move dad to a home we were happy with, but no, ‘The System’ just doesn’t work like that. As I have already said in a previous blog we were given no option. Dad was an emergency and we were told it was Willow Court or nowhere.

The whole family were voicing their dislike of Willow Court, the smell, the dated appearance and especially the way dad looked so mum and I requested a meeting with the acting manager and set out our issues, many of them small but together they became a bigger and bigger problem.

The small things included dad not being changed on a daily basis and even when he was changed the staff would dress him in mismatched clothing. My dad was of the old school, he was always immaculately dressed, shirt and tie or a shirt and jumper and freshly pressed trousers and he always smelled of wood spice aftershave. He also bathed and shaved daily and now he was going days without washing or cleaning his teeth. I remember his ‘Social Worker’ was there at the meeting and she had an excuse for every issue we raised. They couldn’t force dad to get changed or have a bath nor could they tell him to shave and clean his teeth. Really!! Were they not supposed to be trained in dementia care, was this not a problem they faced every day. Mum had managed to keep dad clean and tidy with no help or training. My dad had the right to refuse, ‘Really’!!! he had dementia for goodness sake. What he refused one minute he would happily agree to the next. Had they bothered asking him more than once or was once enough to be able to tick a ‘Refused his bath’ box?

Another bug bear was the way his clothes kept disappearing. Every time we visited we had to sort his drawers and wardrobe. Underwear that clearly wasn’t his in his drawers, his missing. Soft top socks we had bought him because his ankles swelled all disappeared, his coat, shoes and slippers all went walk about without him. His trousers and shirts would be on any old clothes hanger, I mean who puts shirts on trouser hangers. All his belongings were labelled, mum even hand stitched his initials into his socks and underwear, but still it vanished. Worse still his watch and glasses kept going missing. Dad always wore a watch, it was part of him and he would ask us if we had seen it. We in turn would ask the staff who would make a cursory search and just say it would turn up at some point but they never did and after losing 3 watches we had to admit defeat. His glasses, which he needed didn’t last very long at all, so we started buying off the shelf glasses. Not ideal but cheaper and easier to replace.

We were told that his things were insured but when we tried to claim we were informed that his watch wasn’t on his inventory so we couldn’t claim for it. Apparently we were supposed to inform them every time we bought him something so it could go on his inventory, shame they hadn’t thought to tell us this bit of information sooner, and although he was wearing a watch when he entered unfortunately it hadn’t been put on his list of items!!

Dad loved pottering around his garden and although Willow Court had an enclosed garden it obviously hadn’t been attended too for a very long time. The sitting area consisted of broken and old wooden chairs and planters that even the weeds had given up on. Even if we did want to go out into the garden we couldn’t. The patio doors were always locked and someone somewhere had the key but hunting them down wasn’t easy

His social worker asked us to give the home time to sort things out. Then she stated that we actually couldn’t move dad as he was still being assessed and we had to take into account what was best for him. The upheaval and distress it would cause him, after all he had just got used to his new surroundings was it fair to put him through that again? For whose benefit were we moving him? She actually made us feel selfish and guilty. Cleverly done by an expert. She had done this before.

Patience is a virtue, but only if you have the time

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Promises sometimes can’t be kept no matter how hard we try.

Mum managed to care for Dad at home for another year after he was discharged from hospital.

Other than Dad’s psychiatrist, who visited them at home on a regular basis, there was very little help or support ‘In the community’. We helped where we could but with busy family lives, jobs etc we couldn’t be there as much as we would have liked, and Mum always insisted that she was coping.
Mum paid for Dad to be taken out for 2 hours a week by a carer.  His first carer used to ask where dad would like to go and which local places would be of interest, the second carer however used to take Dad to the café in the local park every week and Mam would get the bill for their afternoon tea.
This soon became a pointless exercise so, after hearing about a day centre Dad could go to, she ‘enrolled’ him in that (again at a cost to Mum & Dad). Once a week the bus would collect Dad at 9am in the morning and drop him off home at about 3pm. Dad both hated and loved these days out.
As soon as he awoke in the morning he would announce that he wasn’t going and Mum would spend ages persuading him to get dressed and ready. Yet as soon as the bus pulled up and the two carers/drivers got out he would practically be skipping down the path and waving cheerily to Mum as the bus pulled away. Some nights when he came home he would tell Mum what a great day he’d had and ask when he was going next, other days he would come home ranting and raving at her for sending him. The day centre always had activities planned, Dad would spend one day holding snakes and reptiles and then the week after they’d be off on a trip to South Shields for fish and chips.

Dad spent two weeks in respite care, because mum was in desperate need of some undisturbed sleep, and they both hated every second of it.  We visited him every day at 2pm and he was always waiting at the door for us.  His conversation revolved around him going home and mum got very little ‘respite’ as she spent her time without him worrying about him.

The ‘care home’ was a few miles from where we all lived and to say it was disgusting would be an understatement. The garden was completely unusable, the place was dirty and felt unloved, activities were unheard of and residents seemed to spend their time wandering about aimlessly. We thanked god that he was only there for a couple of weeks and couldn’t wait to get him out.

Dad loved the countryside in particular the Borders of Northumberland and we had promised him a holiday at a cottage we had in Wooler.  He didn’t forget and would ask all the time if we were ever going to go to The Cottage.  So we arranged a weekend away in October 2012.  Mum, Dad, Laura, Nichola, Emily and I packed our bags and headed for the beautiful hills of The Cheviots, a place we all loved and that held special memories of holidays past. 

What we hadn’t realised and had never been told was that people with dementia don’t really cope too well away from their usual surroundings and routines. We thought we were granting him a wish when in reality we had walked him into a nightmare.

He spent the day wandering around the garden and helping mum pull weeds and tidying the flower beds.  That night we sat around the fire chatting, reminiscing and laughing as we recalled past holidays and the silly things we had done.  Dad got more and more agitated as the night wore on.  He was unsure of the layout of the bungalow and kept asking where his room was and were the toilet was.  At bedtime it was obvious Dad was getting distressed, he wouldn’t put his PJ’s on and refused to lie down.  Laura, Nichola and I could hear him through the bedroom wall and we all became concerned as he started ranting at mum and reciting passages from the bible to her.

Then ‘All Hell Broke Loose’ Dad, my quiet wonderful gentle dad tried to attack Mum.  We managed to release his grip and get Mum out of his reach.  But something had snapped, he ranted and raved accusing us of all kinds of conspiracies against him.  I had always managed to calm dad down with a hot cup of tea and a chat, but he was out of my reach. He was somewhere far from reality, scared and alone. 
My gentle, kind, caring and always polite Dad turned into a monster that night, looking into his eyes we could see that he wasn’t there. Looking back at us was a stranger. He behaved in a way that we have never seen from him before. It shocked us all to our cores. The change in him, even from a few hours before, was huge.

Mum was distraught, I don’t know what was worse for her; that he was behaving this way, or that we were witnessing it. She was scared not only for herself, but for us.
It took us what felt like forever to persuade her to go to bed and get some much needed sleep.

That night I sat in the lounge as Dad paced the room, he was desperately trying to make sense of his situation and constantly asking where Mum was.  When I did manage to get him to sit down, he would be back on his feet in seconds, he had a need to walk even though he didn’t know where to, he just needed to be on his feet.

I have never been so glad to see the sun come up.  I was exhausted and mentally drained. How Mum had coped night after night I will never know.  I had had a glimpse of her world and it wasn’t nice, in fact she was in a living hell.  Mum and Dad loved each other and had promised to remain together forever no matter what life threw at them.  But they were now playing a dangerous game of Russian Roulette.  Dad had no control over his outbursts and Mum was in no state to manage his outbursts.  That was obvious from the events of the previous night.  I knew that I was going to have to be the one who took the decision away from Mum and I would have to do it now. 

Trying to get in touch with someone who can help on a Saturday morning isn’t easy and in truth I have no idea who I spoke to or how many departments I dealt with, but eventually I was told a place was available for Dad in Willow Court Nursing Home (even typing that last sentence makes my skin crawl) but we had to get him there before 2pm that day and it was the only place available in the whole of North Tyneside!  As Willow Court is close to where mum lives and I thought this would make it easier for her I said we would be there before 2pm. 

I had to make a conscious effort as I drove Dad along the country roads towards Willow Court not to think about what I was about to do.  Now, looking back, I wish with all my heart there had been an alternative, but sometimes in life there are no choices.
Dad had absolutely no recollection of what had happened the night before, and was back to being his ‘usual’ self. It made the drive that much harder.

There are 2 homes situated in the same grounds.  Willow Lodge and Willow Court.  We were met by the Manager and taken to Willow Lodge to sign some paperwork.  Willow Lodge didn’t look to bad, the reception area was warm and friendly and a faint smell of flowers hung in the air.  However we were informed that Dads room was in Willow Court at the other side of the car park.  With a heavy heart we walked Dad over to Willow Court to see ‘His Room’. 

Horrible nowhere near describes Willow Court.  The first thing that greets you is the smell, a smell of stale air mixed with stale urine and rotten cabbage would be as close as I could get to describing it.

The reception area was dated and cluttered, the opposite of Willow Lodge.  The smell was worse in the corridors and I wanted to say ‘Forget it’ and walk away but I knew that was not an option, I had to do this for Mum and in turn for Dad as I knew he would be horrified if he was aware of the pain he was putting Mum through.  Dad’s room was on the first floor overlooking the car park.  The room was dated and uninviting.  The ‘En-suite’ consisted of a toilet and hand basin that were old and not very clean.  I stood looking around this awful room and my heart broke.  What had I done, my Dad deserved so much more.  In fact NO ONE deserves to be left in such an awful place.

We felt duped, we had been shown Willow Lodge; which looked clean, smelt nice and had a generally appealing appearance. Dad had been placed in the ‘sister’ home next door – Willow Court. We didn’t get a chance to look around, we were shown to his room and told to say our goodbyes.

We were pretty much backed into a corner, we knew Mum could not cope one moment longer and this was the only place available to deal with Dad’s needs.

 Leaving him there was one of the most difficult and heart wrenching things we have ever done. He seemed to know what was happening and begged us not to go, but we knew we had to. Mum couldn’t cope any longer and we had been advised that this was the only other option.
Since his consultant had decided that Mum was his ‘trigger’ we were advised not to visit him at all in the first 4-5 days, it was apparently important that he be allowed to settle in and get used to his new routine. Our visiting him would only have upset him and made the transition more difficult. This presented a problem as we knew it would be difficult not only for Mum to stay away, but for all of us. We did the only thing we could, we repacked the cars, and Laura, Emily & Mum drove back to Wooler (I stayed at home in case Dad needed me). Wooler was the only place we could take Mum where she couldn’t sneak off to see him behind our backs. We believed that Dad was in the best place he could be and our focus had to shift, momentarily, to getting Mum calm and able to deal with what lay ahead. She was heartbroken at leaving the love of her life in the one place she promised she wouldn’t.
So, with heavy hearts we left him.

In hindsight, there are probably many things we would have done differently. But, like I said, we were backed into a corner. We knew nothing about Dementia and it seemed there was no one around to offer advice and support. We had no idea the impact Dad was having on Mum’s life – we could see some of it but certainly not all of it. She lost weight, she seemed to shrink into herself, she cried often and she looked lost.
What we needed was a guiding light, a helping hand – someone out there to talk to and lead us through the maze we had entered. We felt like we were taking wrong turns almost every step of the way, but they were turns we were led to – by people who we should have been able to trust. The social worker, the home manager, the carers, even to some extent his consultant.
When we were going through this, when Dad was going through this Dementia wasn’t receiving the publicity it is now. Now we all know about ‘becoming a dementia friend’ or the Alzheimer’s society – even though this was only a few short years ago not many people knew much about Dementia.

We’ll go into Willow Court and everything his stay there entailed in our next blog, for there is so much to write.

 

The promise given was a necessity of the past: the word broken is a necessity of the present. ~Niccolò Machiavelli

What ‘Goodnight Dunny’ means to me. Written by Laura.

A few people have asked us why we started the Goodnight Dunny FB page and corresponding blog.
It is such a long-winded answer so I normally just reply ‘To raise awareness’.
Really, that doesn’t even cover half of it.
My Granda was failed by the organisations we entrusted with his care.
The decision to put Granda into a ‘care home’ was not a decision which was taken lightly, and it was a decision that was all but ripped from our hands.
So much has happened since my Granda moved into the Care Home I couldn’t possibly catalogue it all in one post – that’s what the blog is for. We will guide you through his & our journey via our blog.

On December 13th 2013 my Granda had a fall and suffered a broken hip. I’ve written about this in one of my personal blogs link-> http://bzzagentlaura.wordpress.com/2013/12/20/the-case-of-the-dementia-patient-the-broken-hip-and-the-family-that-will-never-stop-fighting-for-him/

From that night on my beloved Granda was failed at every turn, we fought and we fought against the organisation that was failing him but our battle was to be in vain.
On February 18th 2014, with his family around him, my Granda passed away and we all said ‘Goodnight Dunny’ one last time.
His death was, & is, a huge blow to our family.
We were exceptionally close, I all but grew up by my Grandfather’s side, it was just about my favourite place to be. I was overjoyed when my daughter arrived and they formed a very close bond.
My daughter (3 years old) loved visiting her Granda, and the hardest thing I have ever had to do was explain to her that she would never see him again, that he was in heaven but he would always look after her.
Even through his Dementia he was always happy to see my little girl, he would light up every time she walked into the room.

So, why did we start Goodnight Dunny?
After countless meetings with the professionals involved in my Granda’s care, and numerous complaints to the relevant authorities we began to wonder..
‘How many people suffering from this terrible disease have slipped through the cracks?’
‘Are there others who lost their lives because they didn’t receive the care they needed and deserved?’
‘Why is mental health considered to be a separate thing from physical health and why are they treated separately when it is the person as a whole who needs the treatment?’

My Granda died because the NHS placed his physical health far above his mental health, even though we told them he wouldn’t recover if his mental health wasn’t addressed.
My Granda died because too many nurses do not know how to handle a dementia / cognitively impaired patient.
My Granda died because his family weren’t listened to.
My Granda died because he was failed by his Care Home and the Hospital.

We want the NHS to make changes to the way dementia patients are treat. We have started the ball rolling and during discussions with people from the Northumbria Healthcare Trust we have made suggestions on how they can achieve better care for dementia sufferers.

If we can save your Granda / Grandma / Father / Mother / Brother / Sister / Daughter / Son / friend / loved one from the horrors my Granda endured then I will be proud.
This will be Dunny’s legacy, this will be how he is remembered.

He would be proud.

I’ll end with two photos. One of my Granda holding me when I was newborn, and one of him holding my daughter when she was newborn.

Sudden realisation. By Denise.

(Continued from ‘It’s just his age’)

 

We left hospital that night feeling happier.

Happier that now they had pinpointed the reason for his erratic behaviour and they had told us that simple measures would bring his salt levels back to normal that soon we would have dad back.

Next morning mum received a phone call from the hospital.  Dad had been moved to a different ward; in fact he had been moved to a secure unit.  They would explain everything when we got there.

We arrived about an hour later and made our way to the rear of the hospital where the secure wing was located.  We had to buzz to be let on the ward and we were directed to a lounge.

Dad was sitting in an armchair in a large lounge area.  He looked dishevelled and frightened.  As we got closer I noticed his hands were badly bruised and cut.  One side of the lounge consisted of large windows and two patio doors leading out to a small garden area.  One of the windows was boarded up and as we reached dad he pointed at the boarded up window and proclaimed that he definitely hadn’t done that.  He told us that the night before there had been some trouble and someone had thrown a side table through the window.  It wasn’t him but for some reason the doctors were trying to blame him for it.  He was agitated and worried, worried that he was going to get into trouble for breaking a window when he was sure he hadn’t.  It’s strange and surreal to see your father behaving like a child about to face the Headmaster.  He was desperate that we believed him, but the evidence and his manner all pointed to him having been the table thrower. We met with the psychiatrist and he informed us that dad had ‘Gone on a wander’ and had been roaming the corridors of the hospital during the night.  When staff had tried to reason with him he had become aggressive.   He had threatened the nurses and doctors and was accusing them of all being in on a conspiracy against him.  He even refused a cup of tea because he thought they had tampered with it.  Eventually they called for a psychiatrist who had to place a temporary sectioning order on him, as this was the only way they could place him in a secure unit.

Once on the unit he had tried to leave and had become violent, in his temper he had picked up a side table and thrown it through the window. My dad had no memory of this.  The psychiatrist thought he had Delirium.  It was strange to hear Delirium being described as a medical condition, as I had always thought it was just a term used as an expression – ‘Deliriously happy’ or ‘He’s that mad he’s delirious’.  The doctor said that hopefully things would improve once his salt levels were back within the normal range and he wanted to keep him in the secure unit for his own safety.

We agreed to a Sectioning Order for 4 weeks.  Dad however wanted to leave straight away and kept insisting we get him out.  He told us ‘They’re all mad in here’.

It is strange how quickly we got used to the surreal world we entered every time we visited him.   The patients were all elderly and all suffering from some form of dementia or cognitive impairment.  We got to know a few because they would stop us in the corridor or sit next to us in the lounge.  They all functioned in their own reality.  One lady insisted we help her leave through the chimney, another told us her son had left her there and pinched all her money.  For the best part we would chat with them for a while then they would just up and leave.

Dad kept asking where his Dog, a border collie called Jess was, so to keep him happy we got permission to bring her in to see him.  We took him in the garden and he sat watching Jess chase after a ball.  A lady stood in the lounge, looking out of the patio doors and gesticulating at Jess.  She obviously wanted to be out in the garden.

Dad stood up and walked over to the patio doors, he took a picture of Jess out of his pocket and pressed it against the glass, at the same time pointing to Jess.  I sat watching him and it suddenly hit me, (up to that point I had been in denial, my dad was only here until he got well again), but watching him interact with the lady at the window I realised, my dad was the same as all the other patients and I wondered how many other families were waiting for that miracle improvement that was never coming.  I decided then that no matter ‘who’ my dad became I would remember who he was and he would always be my dad.

To access and leave the ward we had to press a key code next to the doors, strangely the 4 digit code was written on the door frame yet none of the patients seemed aware of it.

Dad would always follow us to the doors when we left and it was heart breaking watching his face drop as we shut the doors between us.  He would stand looking out of the glass panel like a little lost boy.  I would promise myself I wasn’t going to look back, every inch of my being wanted to turn around and ‘Rescue’ him, I knew I couldn’t because Dad needed to be here.  I always turned to wave as cheerfully as I could while trying not to focus on his sad expression.

 

Dad did improve slightly and the new drugs he had been prescribed brought his mood swings under control.  The doctor was unsure of Dad’s prognosis, maybe he would keep improving or deteriorating.  It was all in the lap of the gods.

I’m not too sure how many weeks dad was on the secure unit. But after a few weeks he was well enough to go home.  I worried that mum wouldn’t be able to cope, but she was adamant that she wanted dad home where he belonged.  She had made him a promise years before that she would never put him in a care home and she was determined to keep it.

‘It’s just his age’. By Denise.

Dad’s Dementia crept in slowly, and at first we all put his random behaviour down to his age.

After all, we all know the old saying ‘It’s just his age’ but slowly it dawned on us that something more serious was happening.  Dad became clingy with mum, he needed to know where she was going and for how long, going in the huff if she wanted to meet a friend or go to the shops on her own.  She became a clock watcher as he would allow an hour for a trip to the supermarket and on one occasion he even locked her out of the house because he thought she had been away too long.  Poor mum shoulder charged the front door and broke the lock because she thought he must have had an accident.  On another occasion he went looking for her and called at the neighbour’s house to see if they had seen her.  For a man who was loathe to knock on doors this was out of character.

He had given up driving a few years previously but decided he wanted a car again and we spent many an hour trying to convince him that it was not a good idea, telling him that the roads were a lot busier now and that drivers were less courteous but he just kept insisting.  He blamed mum for not letting him get a car, poor mum became his default button.  If there was something he couldn’t do anymore or somewhere he couldn’t go it was her fault SHE wouldn’t let him.  He also wanted to go to his local club every night, problem was he wouldn’t go without mum and it was wearing her out.  So we tried to negotiate with him, he could go every other night and he was fine with this unless it was a night he was supposed to stay in.  Like clockwork he would ask at 5:30 pm if they were going out that night and when mum said no he would storm off declaring that HE was going out any way.  After 20 minutes of slamming drawers and stomping around in his bedroom he would appear suited and booted smelling of freshly applied aftershave.  He’d sit in his armchair for a while then disappear again and return with his lounge wear on as if nothing had happened.

Eventually mum had to start ‘thinking’ for him, small things at first like where he had put his wallet or his watch, then she had to put his clothes out for him in the morning.  She would place them neatly on the bed and after breakfast he would go and get dressed.  One afternoon she had been ironing and had left the freshly laundered clothes on the bed, dad had gone upstairs and after a while he came back down, he had seen the ironing on the bed and had automatically put some of the clothes on.

Three years ago at Christmas we were all sitting in my kitchen playing the usual Christmas games.  Dad usually didn’t join in but watched from the side lines.  We were in the middle of a game of charades and my niece was acting out a word but no one could get it, she was waving her arms across her chest and we were shouting out ‘Bust’ ‘Chest’ then from the back of the room someone shouts T-t‘s. Imagine our shock when we all turned round to see dad grinning from ear to ear.  My dad never swore and even Damn and blast were a no-no when I was young.  We all fell about laughing.  It was the best game of charades we had ever played.

A couple of years ago dad cut his arm on a rusty nail and needed stitches.  A few days later his arm began to swell and look red and hot so we took him back to A&E.  He needed intravenous antibiotics so had to be admitted.  He was only in a few days but his behaviour deteriorated more and he spent all visiting time blaming mum for keeping him there.  Insisting it was her fault and that SHE better get him out.  Mum found it hard to cope with and took his verbally onslaughts far too personally but then wouldn’t we all if the man you had loved for over 60 years seemed to be turning on you.

Mum continued to struggle with dad’s random behaviour on her own, refusing our pleas of seeking medical help.  If dad became too uncontrollable then I would get a phone call.  This would invariably be late evening.  Mum would be sobbing down the phone telling me between sobs that my father was ‘Kicking off’ and I could hear dad in the background ranting and telling mum to put the phone down,  So I would jump in the car and go over to their house.  Dad would be sitting in his armchair looking sweet and innocent and mum would be in the kitchen pale and tear stained.  Usually I would not discover what had caused his outburst as he always just blamed mum.  I would sit and listen to his rants and I would take him into the garden where we would sit and drink tea whilst he rambled on and slowly calmed down. Leaving, which I always had to, was hard: dad would appear to be more relaxed and calm but I knew that could change in a second.  One wrong word or look from mum and he would explode again.

Nights were always the worst time for mum she felt alone and vulnerable.  Dad would be in and out of bed all night. Mum had to keep one eye and ear open.  He would say he needed the toilet but then would ask where the toilet was.  Mum always got up with him as the stairs were next to the toilet and she was afraid he would fall or turn at the wrong point.

Mum was losing weight and her health was suffering and dad, who loved her with all his being, just couldn’t see it.  He had no idea how his behaviour was impacting on mum, for the most part he believed he was totally innocent and would tell us mum was going funny. He would take me to one side for a private word and tell me he was worried about mum, how she was looking poorly and we should all take care of her.

Then it all came to a head Big Style.

Dad was admitted to the local hospital, he was poorly and needed tests.  His behaviour became very erratic although he still managed to be polite and courteous to the medical staff as soon as they were out of ear shot he would tell mum to get him out, he wasn’t staying.  He would take his shoes off then 2 minutes later put them back on again, he walked around his bed then back again unable to settle.   Consequently mum had to stay with him through the night sitting on a chair next to his bed.  She rang early the following morning asking how long I’d be.  It was obvious she was at breaking point.  So I quickly dressed and made the short drive to the hospital.  I arrived on the ward to a frantic mum asking if I had seen dad on my way in.  Apparently after a night of dad threatening to walk out mum had snapped and told him to just go and he had.  My dad who walked with a stick had managed to get from the ward and along a vast corridor in a matter of seconds without his walking stick.  The police were called and a full scale search undertaken.  I in turn rang around the family and one by one they all left work jumped in their cars and began searching for him.  The police helicopter was called out to scour the nearby fields and after checking he hadn’t gone home I returned to the hospital to check the CCTV (after permission was granted) with one of the policeman.  As we were standing trying to catch sight of him on the recordings the policeman received a message that he had been picked up by a patrol car close to his home.  He had been missing only 3 hours but it seemed like a lifetime.  I went to the main entrance to meet him and as the police car pulled in I could see dad sitting in the back seat grinning from ear to ear; I wanted to strangle him and kiss him at the same time.  He got out as if nothing was wrong and thanked the young police driver.  He saw me and asked in a surprised voice what I was doing there.  On our walk back to his room on the ward he informed me that he used to play football with the police driver, who was about 21 and that wasn’t it fortunate that he was passing and offered him a lift.

We asked him where he had been and he said he had got the bus to my house but no one was in, then he had gone into town and eventually taken the bus home.  We thought he was making it all up until we later found all the bus tickets in his pocket. Imagine our surprise that the man who struggled to walk along the street while using his stick had been on a 3 hour journey without any assistance!

We discussed what had happened at length with the doctors, we described the way Dad had been behaving in the months before his admittance into hospital. They advised us that some of his test results had come back and his behaviour had been affected because his salt levels weren’t right. They said it had been caused by the current mix of medication he was taking and reworked his prescription.
The doctors advised keeping him in hospital for a few days to monitor his salt levels but advised that now the medications had been changed Dad should start to improve.

Over 52% of people currently suffering from Dementia in the UK are undiagnosed, if we had have known then what we know now we would have pushed harder for a diagnoses.

As it was, things got worse…..

 

Denise

 

Grandad Dunny – by Rachael

Hello, I’m Rachael – one of Dunny’s Grandaughters.

It’s rare that I am stuck for words but when it has come to writing this I have sat for hours trying to decide where to start. 

My Granda to me was a kind, caring, helpful, funny man and his house was always somewhere we were all more than welcome. He was someone we all looked up to and spent a lot of time with.

When my Granda became unwell with Dementia it was hard to accept and at first quite difficult to understand, it had always been an illness I was aware of but one that I never thought would affect my family. 

As has already been explained my Granda was failed by organisations who are supposed to care, with from what I can see little knowledge of an illness that affects so many elderly people and we feel it is time for a change, for people to be educated and for guidelines to be put in place so what happened to my Granda doesn’t happen again. 

 

Rachael

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My dad Dunny – by Denise

Hello, I’m Denise.

Dunny is my father, my hero and my first love.  He wasn’t perfect but he was my dad.  The point of this blog is not to turn dad into some sort of saint but to highlight and hopefully force changes in the care of people who suffer dementia.  We need to tell his story, to share the journey we all embarked on when Dementia became a part of our family.  3 years ago we muddled along much like any other family and dad was just a constant part of our life He was where we took the childrens broken toys or glasses and he would fix them,  Granted occasionally he would be over zealous with the glue and sticky tape but hey he made a crying child smile again when their favourite  toy car had all its wheels back on again.  School projects were always defaulted to dad and he was brilliant at knocking a battleship from old bottle tops and a randomly shaped piece of wood.  His favourite thing to make was paper aeroplanes and he was a demon at them, folding paper into all sorts of triangles and magically producing a plane that could fly forever (well maybe a few metres)  It wasn’t till he was gone that it dawned on me I had never actually learned to make the planes but it turns out dad had shown my eldest son how to make them  Maybe he thought planes were a man thing.  He was of his generation, loved gardening and listening to Frank Sinatra.  I say listening but he invariably took over the singing, hence all his family can now happily sing most Frankie songs, which came in useful over the last few months of his life.

I try to focus on the life we had together before the ‘Experts’ took charge, before he became just an NHS number, an inconvenience, before my dad became a statistic and a drain on over stretched resources.

If you take the time to read this blog then remember – 3 years ago I would have been adamant that what was to happen to my father would be impossible that I would not allow it I would be able to save him and protect him – Yet here I am in this surreal situation feely guilty frustrated and incredibly angry with myself and especially those ‘experts’   who were meant to help.

Denise

Welcome – by Laura

How do we start?
That’s exactly the question we’ve just asked ourselves.

I suppose the best way to start is to introduce ourselves, and Dunny.
Dunny: who this is all about, he’s a husband, he’s a father, a grandfather, a great-grandfather, an uncle, a friend but most importantly: He’s our hero.
….Should I say he was? No, I can’t and I won’t. We may have lost him but that doesn’t mean we have lost who he is to us.

I’ll start with me, why not!
I’m Laura, Dunny was my Grandfather, IS my Grandfather.
Posting alongside me will be:

Denise: My Mother and Dunny’s Daughter.
Nichola: my little sister and Dunny’s Granddaughter.
Rachael: my cousin (might as well be my sister!) Also Dunny’s Granddaughter.

There’s a good chance more of Dunny’s huge family will be posting. They can introduce themselves if and when they post.

On February 18th 2014 Edward Dunn, head of our family, said Goodnight one last time.
His passing was peaceful, calm and absolutely filled with love.
It was the very least he deserved.

What you will read in this blog is how the last year (ish) of his life was NOT what he deserved. You will read how the organisations who were entrusted with his care failed him on every level.

You’ll hear how we, his family, are racked with guilt. How we tried to fight a system which would not listen.

Most importantly, you’ll hear how we want changes, we want to ensure that what happened to Dunny doesn’t happen again.

Let me give you a bit of history.

Dunny is my Grandfather, he is also my hero.
To me- Granda was a huge man who could do absolutely no wrong. He was a fountain of all knowledge and on the rare occasion he didn’t have the answer to my question stored in his head, you can guarantee he had it in a book which he stored in his ‘library’ (the spare bedroom at his & my Nanna’s house).
He was my great defender, he was the man who swore he’d fight a thousand bulls for me. I guarantee you, if he could have found a thousand bulls he’d have battled each and every one of them and won.
Nothing was too much trouble for my Granda. There is nothing he wouldn’t have done for his beloved Grandchildren.

Then, he got dementia.

Dementia is a cruel illness. It robs a person of who they are, it steals someone from their family piece by piece. It’s a gut wrenching, heartbreaking, funny disease.

Yeah, you read that right. FUNNY.
My Granda lost a lot of things, but he never lost his sense of humour. Thankfully, we didn’t lose ours either.

Over the course of this blog we’ll tell you how the dementia progressed, how we were forced into making a devastating decision, how he was let down by those we trusted with his care and how we plan to fight to make sure it doesn’t happen again.

 

Laura

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