This is my Grandad. He’s 88 years old. He has dementia. This photograph was taken years ago when he was an independent, clever, opinionated and self-assured man. Now, myself and my family have to do everything for him along with regular carers. We don’t get paid. We don’t get a pat on the back. All we get is the satisfaction of knowing our cherished family member is safe and loved, within the nightmare we’ve found ourselves in.
My grandma is 85 years old. She’s his full time carer. She works all day (and very often through the night) with very little financial, emotional or practical backing, and yet she still manages to look after and maintain her own wellbeing, and that of her family. She’s the strongest and bravest woman I know.
Whenever a dementia or Alzheimer’s awareness week comes around, I feel it is my duty as someone who knows first-hand what dementia looks and feels like, to educate those who know very little about this illness. I feel it is important to help you to understand it, and appreciate the extent to which it can affect not only those who suffer from it, but their families as well.
Around nine years ago, my Grandad started to show signs of forgetfulness, which at the time we all assumed was simply a factor of old age. You see, dementia is a broad category of brain diseases that cause a long term and often gradual decrease in the ability to think and remember things. He would ask ‘Have we had tea yet?’ which, after a while, became a family inside-joke. But, as the years progressed, we realised it was more than just a temporary trip of the memory.
He started to lose some of the skills he previously had, and gradually forgot how to do simple tasks like making a cup of tea or finding the bathroom. Of course, this was emotionally unsettling and sometimes scary for all of us, but with bravery in our blood we took it in turns to sit with him, take him for walks, or help him maintain some of his skills. We would run errands for my grandma so that she could care for him, and then swap over when she needed a break. Like most situations, getting into a routine made things easier, but when he suffered a stroke in January 2014, things started to change once again.
The stroke caused him to lose the use of his left side, meaning he would need a wheelchair permanently. Obviously this meant that it was easier to keep an eye on him, and stop him wandering out of the house – we had all become quite used to going out on foot and in cars to bring him back home – however, being in a wheelchair cannot be comfortable, and feeling restricted cannot be enjoyable for someone who has lived such a full and energetic life.
Whilst the stroke impacted him physically, the dementia remained, which meant we started to see a lot of emotional changes as well. Some days he would be fine – he would ask you questions, laugh, and seem quite content.
Now, several strokes and years later, those good days are few and far between. react, or act, from day to day.
It’s our job to keep life consistent for him – to play to his strengths and help him through his weaknesses. To exercise his memory with crosswords and old music from his teenage years, and to answer any questions that may baffle him. What a lot of people don’t realise is the new memories are the first to go; you can ask my Grandad his date of birth, his RAF number or the names of his friends from fifty years ago, and he won’t hesitate to reply.
And as tough as it may be, sometimes you have to be the emotional punching bag. You have to learn to be incredibly patient if you aren’t already, but you also have to keep in mind that however they respond isn’t a reflection on you or your actions, but evidence of how this illness can and does affect people.
Despite it all, my Grandad’s lucky. If nothing else, he has a solid support system who care for him 24/7 and, most importantly, who love him. Not everyone with dementia has those privileges.
This isn’t a common cold that just needs medication. This isn’t a wound that just needs ‘time to heal’. This is an illness that needs support, love and, more than anything right now, awareness. If more people understood what dementia is and how they can help, then maybe more people could receive the care that they need, and together we could make living with dementia that little bit easier.
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Header photo: Number 10/ Flickr.