For National Dementia Awareness Week, I thought I would take this opportunity to write about my own experience with the evil disease and hopefully help some of you who may be in a similar situation. I saw a variation of Dementia, Lewy Bodies Dementia to be exact, from the very early stages to an incredibly heart shattering finish and it’s something I will never forget. As previously mentioned in my ‘My Best Friend is a Diamond‘ post, where I talked about my Mum, I mentioned that we had lost my Nan on Easter 2013, after she had suffered from Dementia for over 8 years. It’s always been a touchy subject, where no one around us really knew what to say and would often say the wrong thing, or worse, nothing at all.
It wasn’t a common conversation back in 2005, as not many people had heard about it or understood Dementia, a lot of the time they were referred to as ‘mad’ or ‘nutty’, which isn’t the case at all. Still to this day there are people who aren’t quite sure what Dementia/Alzheimer’s disease actually is.
So, What is Dementia?
As written by the Alzheimer’s Association page,
‘The word dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language. Dementia is caused when the brain is damaged by diseases, such as Alzheimer’s disease or a series of strokes.
There are many different types of Dementia which is why every case is slightly different and your story, or my story that you’re about to read, might not be the one that you’ve seen on TV or read in a book.’
My Nan was the typical ‘nan nan’ who was living at home independently and confidently and wanting to feed you at every opportunity…. before Dementia. Soon my Mum started to pick up that she was misplacing things and becoming confused more and more. Not long after, my Nan was diagnosed with early onset Alzheimer’s and my Mum became her primary carer, visiting her several times a day and night to make sure she was well and safe.A bad Winter and a terrible cold led to my Nan being hospitalised for weeks, and for anyone who’s been in this situation, after they’re in Hospital, it’s extremely difficult to get them back out. This is because in some cases it is clear that they cannot look after themselves any more, and in our case, there wasn’t a way we could move in or move her in with us. Due to this, it was decided that the safest option would be a home. My Nan then spent the rest of her years in not one, not two, but three nursing homes, before finally being laid to rest.
I find it hard to remember my Nan before Dementia, and even with the disease, I find it hard to remember her good days, the days where she could remember who I was. I was only very young when her illness started to take over, and it terrified me to even visit her. My Nan’s particular type of Dementia was cursed with another syndrome on top called Charles Bonnet syndrome (the experience of complex visual hallucinations in a partially or severely sighted person), this meant that my Nan would see ‘The Little People’. In her more lucid moments she would describe them as small beings with no arms, no legs, blacked out fuzzy faces that would fade and hop in and out of the room. I really regret not spending more time with her despite of this.
Having to put a loved one into a home is a very dark time. I just remember how upset my Mum was constantly, as you feel hopeless and wonder if you’ve done the right thing. In these cases you have to remember that you cannot risk them hurting themselves in their homes. At a home, despite my ongoing hate for them, they are the safest places. My Nan went into a temporary home after the Hospital, before her second home where she ended up spending most of her years with Dementia. This was a special EMI home, Elderly Mentally Infirm home, and catered for people with Dementia.
Being a home full of Dementia sufferers meant that it was a little scary to walk into at first and visit, but then I thought to myself, what if someone was scared of my Nan? The residents were all mums, dads, or even grandparents to someone and were nothing to be afraid of. Soon enough, we got over our initial fear and started greeting the other residents. Some of which would roam the corridors walking endlessly up and down, those you greeted quite a few times per visit… I would even play games with the old gentlemen who used to call me pretty, he would draw out his imaginary gun as you walked past him on the corridor, and it became a little joke for us.
My Nan also had problems with her hearing and eyes, which meant she’d often reply or even shout at people who were not talking to her. This caused a couple problems between her and a newer resident, who soon became very lovely. During a ‘bad day’ at the nursing home, which basically meant that my Nan was either aggressive, very confused, upset, or on her worse days, not even conscious, we headed off to the family kitchen for a little breather and a cry. It was often that we’d had to step out and have a moment during her stay at this home. On this one particular occasion, this incredibly lady, who was also suffering with Dementia, came into the kitchen to share her kind wishes and said the most beautiful phrase ever to describe this disease…
‘They’re not living, they’re just existing.’
We were both touched by this moment, but it did reduce us to yet more tears. My Nan eventually passed away on Easter 2013, and it’s still very hard to talk about, but this is one memory that will always stay with me.
Throughout all these hard times my immediate family really did struggle with having a ‘Dementia Friend’, basically someone in our lives that would actually care and be there for us through everything. It was difficult to talk to each other about it as we all dealt with it differently. We had moments where we felt like we had the support we needed, but they were short lived and not very frequent. The majority of people who were in our lives throughout her illness are not any more, my family figured that we don’t need people who aren’t there in our darkness and hardest days in our lives any more, and we’re much happier for it.
Dementia Friends, an Alzheimer’s Association Initiative, is a website where you can watch videos on how to treat people with Dementia, on how to be patient and understanding. There’s also a free book that you can order with advice and tips on how to act around someone who has Alzheimer’s. One thing that people don’t understand with Dementia is that it affects the family of the person suffering from it too, sometimes just as much but obviously to a different extent. My Mum’s health has deteriorated from years of not looking after herself, from being too busy looking after everyone else. My brother and I had a massive part of our childhood ripped from us and our family has never been the same.
The main focus with this awareness week is for people to not bottle it up, share your experiences, talk to a friend, if you don’t have anyone you feel you can trust or feel you can talk to, go to the Alzheimer’s Association where there are hundreds of threads of people in the same situation and waiting to help you. There are groups, meetings, phone lines and email addresses, there’s all the help in the world that you could need. You just need to ask. Or if you know someone who could do with help, become a Dementia Friend and support them. It’s really not that difficult to just listen to someone or help out. Even offering to take a friend who’s caring for someone with Dementia to the supermarket once a week, or go round and make them a cup of tea, could make the world of difference.
If you have a relative with Dementia, I urge you to see them as much as possible, to make every moment count and to most of all, be very patient. Yes, they may forget your name, your age, who you are to them, but if you stay by them, make them a cup of tea, put on the TV, let them know that you’re there, you’ll definitely not regret it.
If you have a friend whose relative has Dementia, then quite simply, don’t be a dick. When they’re down or in need of someone to talk to, don’t talk to them about stupid little things, such as a mild skin condition that you have, a boyfriend that’s on holiday and certainly don’t ignore them even if they push you away.
To me a Dementia Friend is someone who you know is only a text, phone call, drive or walk away that is ready to be with you and help you in any way you need. Whether that be a chat, or a day out to take your mind off things.
You never know where you might come across someone with Dementia, whether you’re serving them in a shop, or walking across the road at the same time as them, educate yourself on Dementia and have access to useful resources.