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
Goodnight Dunny 