Wednesday, 26 June 2019

Our Experience of Dementia

If you follow my YouTube channel then you might have seen I recently made a video about our experience of Dementia. I thought I would also write a corresponding blog post about the topic, as I know different people prefer to consume different types of media, and I think it’s an important subject to talk about with as many people as possible. 

One of the reasons I decided to talk about our story is because, on the 13th June, the Alzheimer’s Society organised a national Cupcake Day in order to raise awareness of dementia and to raise money in the fight against it. Their reason for using cupcakes was:

“In the average time it takes to bake a batch of cakes, six people in the UK will develop dementia. It is now the leading cause of death in England and Wales, overtaking both cancer and heart disease.”

With the number of people who develop Dementia, I would be surprised if you didn’t know someone that had/has the disease. Unfortunately, it’s something that has touched my family’s lives and mine deeply, and so today, I would like to tell you all about my Gran. Rather than launching straight into all the awful things dementia brings, I want to start by telling you who my Gran was and what she was like before the dementia hit.

My Gran was called Patricia – some people called her Pat, some called her Trish – but I just called her Gran or Granny. She was born on the 5th December 1923, at home in Wembley, London. A few years later, her younger brother, Robert, came along too. I don’t know a huge amount about her early childhood – we’ve looked through some of her things, mainly from her adult life, but there are still photo albums and papers that we need to go through at some point.

I started to find out a bit more about her when she became a bit older and joined the W.R.N.S (Wrens), which is otherwise known as the Women’s Royal Naval Service, during the Second World War. She was one of the first female commissioned officers to be in the Wrens, which is a pretty monumental thing for any woman to do! When she joined, like all the other recruits, she had to take a compulsory sight test. Unfortunately, she was blind in one eye and had been for as long as she could remember. But this wasn’t going to stop her from helping her country. Instead of giving up, she memorised the whole sight test – where every letter on the chart was – so that when she went to be tested and her good eye was covered, she could give the illusion that she was able to read the chart. Although perhaps not the best thing to do, it just shows what kind of person she was. She wanted to pitch in with everyone else and do her bit for her country. 

In the Wrens, she worked as a secretary and was in charge of a team who typed up the orders for the D-Day Landings. They were all hidden away in a secret building, which was obviously closely guarded to stop any enemy infiltration. She always used to tell us how, if they wanted to go to the loo, someone would have to escort them there, wait for them to go and then bring them back to the room again in order to maintain the highest level of security. I can’t imagine what it must have been like to be typing up something like that, although I guess at the time, they probably didn’t even realise what an important part of our history it would become. But knowing she played her part in getting us our freedom makes me very proud.

After the war, my Gran continued to work as a secretary and married Alan, my Grandad, in 1952. A few years later, in February 1957, my Mum came along. As my Mum grew up, the family moved around a bit, starting with moving to Harpenden and then on to Felixstowe. That’s the first place I remember them being, as I lived in Felixstowe for the first couple of years of my life and when we moved to where we live now, we would often go back to visit my Gran and Grandad there. 

I have very fond memories of my Gran and my Grandad growing up. We were very close to them and they really doted on my siblings and I. In the summer holidays, I would go and stay with them for a week, and used to love having my own little holiday there with them. They would take us to the beach, we’d go to the pitch and put, go out shopping with them and my Gran would always bake cupcakes with us. I loved them both, but my Gran was always on the ball and so incredibly caring. I remember her hugs being the absolute best! If I could go back in time to those happy days with them, I would go in a heartbeat. 

As her and my Grandad got older, they decided that they wanted to move to be closer to us. Felixstowe was a fairly long drive away, and if anything happened they wanted to be close by to family. They moved to somewhere called Fleet, which is about a fifteen minute drive from where we live, and lived in a flat with a warden who was there to look out for all the older residents. Their time in Fleet to begin with was very happy. It was lovely having them closer to us, as it meant we could see them more, and they seemed to settle in well to their new community.

But in 2007 everything changed in a matter of minutes. My Grandad had a massive stroke at home, and when he reached the hospital we were told to prepare for the worst. They didn’t think he would make it through the night. But I guess they didn’t know how determined my Grandad was, because he proved everybody wrong! He recovered enough to not be deemed in a critical condition any more, but unfortunately the stroke had still had catastrophic consequences. He was no longer able to speak, eat or walk and had become incontinent. After being moved around various hospitals for rehabilitation, he was eventually moved to a local nursing home. The most painful part though, was that his mental ability hadn’t changed. It was obvious he still knew exactly what we were all saying and understood everything that was going on – he was just trapped inside his body. I can’t imagine how difficult that must have been for him.

Looking back, I think this was a huge trigger for my Gran’s dementia. I can’t say that it caused it completely, because dementia is a complicated thing, but certainly the stress and grief that came with my Grandad’s change in health seemed to set off a spiral in my Gran’s wellbeing. She was now living alone in their flat and found it incredibly hard accepting the situation my Grandad was now in. It was like grieving for the person she loved, yet he was still alive. 

It was around this time that we started to notice that things weren’t quite right. She would sometimes stumble over her words or struggle to find the words she wanted to say. This brought with it huge amounts of frustration and we noticed her also becoming more anxious, but it wasn’t really enough for us to be able to put our finger on anything or bring in the doctor. We thought it might just be the stress of my Grandad’s illness, having to live alone for the first time in years or just signs of getting older. How wrong could we be?

My Grandad defied all the odds and continued to live in the nursing home until he died, three years later, in 2010. Over those three years, we had continued to notice a decline in my Gran, although she was still living fairly independently, with the help of regular carers. It’s so difficult in the early stages to judge whether it is just normal aging and a slight forgetfulness, or if something more is going on. If we went through it again now, then perhaps we would notice sooner, but at the time we just didn’t know that much about dementia. 

After my Grandad died, we began to notice a much bigger decline in my Gran’s functioning. We would get phone calls from the carers saying that they had left her with her evening meal the day before, and the next morning it would still be sitting on the table untouched. She was also becoming a lot more agitated and upset, mainly due to her memory loss and the frustration she felt at not being able to remember things. We were also getting a lot more phone calls from both the warden and the staff on her helpline button saying she had fallen or that she was very agitated/upset about something, so my Mum especially was driving back and forth between our house and her flat constantly. 

One particular phone call that I will always remember came quite late one night. It was from the warden, who told us that she had found my Gran walking around the car park in her nightclothes in a very distressed state. It turned out my Gran had thought that we were going to pick her up, so she had gone outside, without her key, and then couldn’t get back into the flats and so had got really scared and upset. This is when we realised that this wasn’t just ‘normal’ aging and that something more serious was going on. The current situation wasn’t working for anyone – my Gran was starting to put herself in danger because of her confusion and my parents were exhausted from driving back and forth between our house and her flat so often. Something needed to change.

So we spent a lot of time considering what the best next move should be. We considered a nursing home, but were really concerned that my Gran wouldn’t settle in one because of her confusion. In the end, we decided to move her in with us, so we turned our downstairs study into her new bedroom and she came to live with us permanently in 2011. 

Over the next four years of her living with us, things just got progressively worse. She eventually got to a point where we started getting doctors involved and she was then officially diagnosed with dementia, although we had already suspected that would be the diagnosis. Unfortunately, although the diagnosis gave us a name for what was going on, it didn’t bring with it any real treatment or hope. She tried a few different medications that can help with some of the symptoms, but in her case they either made her symptoms worse or turned her into a complete zombie, which we didn’t want. In the end, we were discharged from the psychiatrist and were left to cope with how things were going and find our own ways to try and manage.

Her dementia definitely went through quite defined stages. To begin with, there would be times when she was really confused, but then other times where she was quite lucid and, to the outside world, probably looked like any other person. I think for her though, this was one of the most difficult phases, because she still had that awareness and knew that she was getting confused, which led to a lot of frustration and anxiety. 

She would tell all sorts of stories – for example, she was convinced that they were building underwater bungalows at the bottom of our road. She told everyone about them and asked how they were getting on all the time. In the end, we had to take her out in her wheelchair to show her they didn’t exist. Another time, she told her carers that we had been burgled in the night and that she had hit the intruder with a frying pan to get him out of the house, and then had gone to the locksmith to get all the locks changed. At first, the carers believed her because she sounded so convincing and she truly believed these things were happening. 

Looking back, it sounds quite funny now, but at the time it was heart breaking. We learnt not to challenge her or argue with her when she came up with these stories because it only made her more upset. The only times we had to correct her were if it would put her in danger or if it was something she genuinely needed to know. She would often forget that my Grandad had died, so time after time we would have to break the news to her and she would react as if it were the first time she had heard about it. It was a horrible situation. 

During this phase, her eating also changed. Years before, she had been diagnosed with Type 2 Diabetes and since then had always been very careful about what she ate. But now, she would just eat and eat and eat. It was like there was no regulation from her brain on when she felt full and she honestly couldn’t remember that she had just eaten. She would finish a meal and we would sit her back in the lounge, and then she would ask us when it was time for her breakfast/lunch/dinner. Because she couldn’t remember having eaten anything, she would get quite cross with us because she thought we were lying to her and not letting her eat, which was particularly difficult. 

Then things changed again, and the next phase of her dementia seemed to kick in. She became incredibly emotional, tearful and anxious all the time. She wanted someone to hold her hand all the time and was absolutely terrified of falling. It was very difficult to comfort her because a lot of the time, she didn’t understand what she felt so upset about, and if we did calm her down, she would soon forget and the process would start again. 

In this time, her eating was flipped on its head. She went from eating loads, to not eating very well at all. It sounds awful, but it was almost like she had regressed back to being a child. She would refuse to eat her vegetables or anything healthy, and all she wanted were cakes, puddings and anything sweet. But unlike a child, you couldn’t reason or explain things to her because she simply didn’t understand. And in the end, after speaking to our doctor, we just had to give her whatever she would eat because it was either that or nothing. 

And more and more of the time it became nothing. She would often just sit and look at the food in front of her, but wouldn’t eat it. Even when we asked her if she was going to eat it, she would say yes but then not do anything. It was as if her brain just didn’t make the connection between the food in front of her and needing to eat. She didn’t know how to pick up her cutlery or how to feed herself, and I don’t think she actually felt, or understood that she felt, hungry anymore. At this point we resorted to having to feed her to get some kind of nourishment in her.

This phase just seemed to get worse and worse as time went on. As well as being very emotional and agitated, she also started to become aggressive. It was horrible to see because she had always been such a kind hearted, gentle person – it just wasn’t her any more. She would hit and bite her carers, often through fear because she didn’t understand they were trying to help her, but her aggression would also come out with us as well at times, although with us (and my Mum especially) it was more verbal than physical. I know my Mum really struggled with the person my Gran was becoming because she was so far removed from the Mum she used to know. 

It was getting to the point where she didn’t really know who we all were any more. She would often refer to my Mum as a member of staff – I’m not sure if she thought she was in a care home or something – but she would regularly tell my Mum that her daughter never comes to visit her. And even when my Mum explained that she was her daughter, my Gran just couldn’t see that. But she still desperately wanted someone with her all the time because she was becoming more and more fearful and upset about things. It became incredibly difficult, especially at nighttime when she would constantly call out for help and want someone to be with her. She couldn’t be left alone in the house, which obviously had a big impact on our lives as well, and although we had managed to get a couple of hours of respite care, the majority of the caring came down to us as a family, and my Mum especially. She couldn’t walk, so had to be hoisted, she was incontinent, she needed help with eating and drinking and just generally needed a lot of emotional support.

By this point she was barely eating anything at all – she just didn’t seem to know what to do with food, even when we tried to feed her. Because of this, she was losing a lot of weight and became incredibly thin. It was a stark contrast to how she was when she was well because, although she hadn’t been fat, she had always really enjoyed her food. It was also impossible to give her any medication because she simply wouldn’t take it.

Getting medical care for her was also incredibly difficult because she could no longer leave the house. Thankfully we had a brilliant GP who would come to visit her, but apart from those visits we were pretty much on our own. We did manage to get a couple of hours respite care a week from The Princess Royal Trust for Carers and it was honestly a lifesaver. It gave my Mum a bit of time to herself and meant she could actually leave the house without worrying that my Gran wasn’t getting the care she needed.

I feel awful saying it, but some days we would just wonder when it would all end. We loved my Gran so very much, but this wasn’t really my Gran any more and it was incredibly hard some days to find that love we had for her and keep caring for her. I hate saying that because it makes it sound like we didn’t love her or that we resented her, and of course that isn’t the case. It is just incredibly hard seeing someone you love change beyond all recognition and fade away before your eyes. We had no idea that dementia could be this devastating and had no idea just how much of a person it could take away. 

In the November of 2015, my Mum had gone out early to take my sister to the hospital to sort out a broken arm, so it was left to my Dad and I to wake my Gran up in time for her carers to arrive. On any other day, I would have gone and opened my Gran’s bedroom door to wake her up myself, but for some reason on the 18th November 2015, I decided to wait so my Dad and I could do it together. We opened the door and said our usual “Good Morning” but it quickly became obvious that something wasn’t right. My Gran had, sadly, died in the night. 

The whole situation affected me a lot, and I ended up having to have bereavement counselling afterwards. I had never seen anyone dead before and without going into too much detail; it didn’t look as peaceful as you’re often led to believe in TV and films. My Dad phoned my brother straight away – he’s a paramedic and was at home, so he said he would come straight round to do some checks on her. I also rang our Doctors Surgery and asked if I could speak to a doctor. I was told I could have an appointment for two weeks time, and at that point I think I just burst into tears and told the receptionist that my Gran had died in the night and I didn’t know what to do. She was absolutely lovely, reassured me (she knew who I was, and knew that my Gran had a Do Not Resuscitate order) and organised for a Doctor to come to the house to certify the death.

Waiting for the doctor to come was the strangest wait I think I’ve ever had. I knew my Gran was lying in her room not alive any more, so I couldn’t just go and get on with the rest of my day as if nothing had happened. We ended up all just sitting around talking about nothing in particular until the Doctor arrived. He organised for a private ambulance to come and collect my Gran to take her to the funeral directors. But my Mum still wasn’t back, and therefore still didn’t know what had happened. We were terrified that she would get back to see a private ambulance on the driveway, or, even worse, that they would want to take my Gran away before my Mum got home. Thankfully, my Mum arrived home before the ambulance got here. We had to break the news to her and then she wanted to go and say goodbye to my Gran.

Seeing my Gran being taken out of the house in a body bag was the moment that really set off my tears – I think it made the whole thing seem very real. After she had gone, the house felt really empty. Despite my Gran fading away both physically and mentally, she had taken up a huge space in our lives, so for that to suddenly be gone was incredibly strange. All of a sudden, we didn’t have her carers coming in four times a day. My Mum didn’t have to care for her 24/7 – she didn’t need to prepare her meals, to do all of the extra washing, to sit with her in the middle of the night. All of a sudden, there was just nothing. 

Saying goodbye to my Gran, both at the funeral directors (I decided to go and view her body) and at her funeral, was a surreal experience. In many ways, I had already said goodbye and grieved for the Granny I knew and loved for so many years. But despite my Gran not being 'her' for the last four years, there was still so much to say goodbye to and so much to grieve for.

Before my Gran became ill, none of us had any idea what dementia really was. We learnt very quickly that it isn’t just being a bit forgetful or confused – there is so much more. It’s forgetting who those around you are, it’s forgetting who you are. It’s forgetting how to eat, how to walk, how to use the toilet and how to communicate. It’s losing your whole self, bit by bit, and not being able to do a single thing to stop it. It’s devastating.

And that’s why I wanted to share my family’s story. To help people understand just how devastating a dementia diagnosis can be. So that people can know the signs to look out for, and so that we can all be a bit more understanding if we meet someone who might not be acting like everyone else. As I said at the beginning of this post – more and more of us are living longer and more and more of us are developing dementia. We need to support charities like the Alzheimer’s Society who are doing research so that, one day, we won’t have to suffer in the way we have seen our loved ones suffer. 

I’d be really interested to hear your thoughts on dementia – have you known someone with the disease, or have you learnt something from hearing our story? It’s also never too late to fundraise for the Alzheimer’s Society, so please do consider them when you plan your next fundraising challenge

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