The title of this post is a hefty one but trying to shorten it down in any way made me, even as the writer, get different expectations about what the content was going to contain. I wanted to avoid puns or clever wordplay and instead focus on the matter in question and to take the serious nature of it with both hands.
So many people, in the UK alone, suffer from dementia with the number being estimated at 850,000. And not all of those people are diagnosed. So there is a fair chance that you either know somebody that has dementia or you know somebody that has a family member going through it.
I have wanted to discuss this for a while but each time I try I give up and walk away from it. Not because I do not know what to say but because it is hard and brings back a lot of memories and emotions for me. Before I go into the different ways that people deal with it, some advice and tips I want to give a bit of a background story that gives you a chance to understand why I believe in the suggestions I put forward.
It was 2007, I was 13 and in year nine in high school. Life was starting to get serious as I had to select what GCSEs to do, started getting sent on school trips to universities and my Great Grandma suddenly lost all memory. My parents had, for as long as I can remember, helped her out in various ways from taking her to the supermarket so she could do her own shopping (despite being nearly fully blind) to doing the cleaning once a week.
But when suddenly my Great Grandma woke up and thought it was decades earlier, there was a different monarch on the throne and she got people confused everything changed. And when I say woke up like that I mean literally with no warning whatsoever. I was in denial about the whole thing, I had barely ever heard of people ageing and their memory disappearing. The only memory loss I had heard of was from magical stories and fantasy worlds. This could not be happening in real life but somehow I seemed to be living and awake. It was happening.
Every morning I would wake up that bit earlier and we would go off to get breakfast sorted for her before I was whisked to school. After school we would swing by to check everything was okay or to get the evening meal ready. it was barely any time at all but it felt like an absolute lifetime of awkwardness and terror. I was 13, I just could not understand and I was fairly selfish and already fairly scared of the world.
I was coming to terms with a range of other things, I barely had any friends in school and with my parents being so busy looking after my Great Grandma, as everybody else either could not help or were too far away, I had nobody to talk to or turn to when I started to struggle. My back had been hurting a while and I was taking some paracetamol to the nurses office that day so it could be stored there if I happened to need it but instead I sat outside, alone as usual at the point in time, and just swallowed them all.
I felt so scared and so alone and it was so selfish. It was probably exactly how my Great Grandma was feeling and my parents were feeling too. It was a point in my life when I was tired of everything and I just did not want to handle the reality any longer. I did not want to go to another funeral, I did not want to have to accept another person in my family had slipped away from me and I did not want to deal with whatever might follow in the future.
But here is the thing. I was 13 and whilst I watched the news I did not understand everything that was being broadcast and had that naive attitude that the things on there did not matter to me and would never matter to me. I was more interested in going out to hang around with people that liked me or eating my dinner than I was to listen to worrying new statistics about some illness or disease. I had never heard of dementia. There were no resources available for children of carers. Why would there be? There were no resources available on how as a young person to deal with that sort of change in your life. And again who would ever think to put money and time into that? It was a dark lonely world but there was no clear way to seek help or to know where to look for advice.
I understand that whether you are 31 or 71 seeing somebody change, especially so suddenly, is tough. Seeing people change slowly is perhaps worse because you are just waiting for the inevitable day when they have no idea where they are or who you are. And you naturally feel like there is absolutely nothing you can do to help them or to make the situation seem better but there are ways and whilst they might not make everything okay or perfect they can help.
Tips, Tricks and Advice
- Accept it. Yes I know that is easier said than done. But not accepting it does not make it go away it just makes it more difficult to be around that person, to hear people mentioning that person or to be able to handle it. Accepting it does not mean being tough, not crying or seeming like you do not care about it. You can cry, you can question why it is happening and you can express emotion.
- Talk about it. If a friend, teacher or work colleague says you seem tired or stressed recently then let them know why. Explain it is because you are having to do various additional things as well as the usual previous commitments. That does not mean telling them all of the things that person now needs help doing or full on telling them the life story of that person but if they know then at least they can try to work things around that sometimes or check you are okay. Nobody can look out for you if they do not know anything is wrong. And if you do not want to talk to somebody you know then there are support groups out there that you can go to and either talk about your experiences or just listen to those of other people. They might have a great way to manage it.
- Let them talk. They might be talking ‘rubbish’ or ‘jibberish’ but let them carry on. Just because it is not actually 1970 does not mean what they are saying is completely made up. You might find out something interesting about their past or what they used to get up to that you have never heard before. If they say about going to a particular place in a certain town but you know it is in a different town do not shut them down. Let them carry on telling the story and let them express their memories. The memories might not be perfect but when they know they are losing their memory shutting them down every five minutes is demoralising and in some cases it can stop them talking. It might be frustrating that they have not got something right but this is so important for them and if you learn something new along the way then that is cool too. If you really want to correct them, do it at the end of the story.
- Look at photos with them. This is sort of linked to the above point but if you look at photos with them they might remember an interesting story and even if you was there or have heard it 100 times at least they have resurfaced something. But also looking at photos gives you a chance to remember them in their better and more fully rounded self. And if you look at those photos and look at the person sitting next to you it becomes evident that it is the same person and they still look the same just a little bit of them got lost somewhere.
- Do not be afraid to talk to them. Tell them about that book you have read or that film you have watched. Just take it slowly and do not bombard them with facts and information. Tell them about your day. Even if they do not remember that discussion in five minutes time they will understand enough in the present of the chat to be able to ask you a few questions and understand what you mean. They seem more human, which obviously they are, if you actually continue to treat them like a grown adult rather than a toddler that understands nothing but the food aeroplane.
- Ask for help. If you are having to help look after them and it is draining you or you are struggling to do that to the standard you know they deserve whilst juggling other life things then please ask somebody to help out. Whether that be a professional agency or another family member there is nothing wrong or shameful in asking for help. The person you are helping would hate to realise you are run down, stressed and struggling with life because of them. There are people out there to help, even if it is just to give you an hour a week to yourself, and they will do things to the standards you expect and demand.
- Go with them. If they want to go for a walk or you are in a public place and they need the toilet then just go with them. Do not ask if they want company to the toilet but say you think you need to go as well. Check that they shut the cubicle door and that they wash their hands whilst you are at it but you do not need to make it massively obvious or a big deal. If they want to go for a walk then going with them means that not only can you ensure they are safe and do not happen to get lost but also it makes them feel loved and that people still want to spend time with them (even though they often do not want to spend time with themselves).
- Do not leave anybody behind. You would not leave somebody behind in a fire so do not leave them behind in a stressful and scary point of your and their life. if you are struggling or worried then chances are somebody else around you that is having to ‘deal with it’ is too. Make sure that you spend time with that parent, sister, child or whoever it is because whilst it may be a life-engulfing situation and you might be tired that does not mean that they suddenly do not need you or that your support and time becomes any less valued. Everybody needs five minutes of normality to help them get through this for however long it lasts. Try and sit down for a meal with them without having the TV or radio on and ask them about their day or spend five minutes having a chat on the phone with them.
- Look after yourself. Make sure that you still have your three meals of the day, drink plenty of water and get enough sleep. You are not going to be any use to anybody if you are barely able to function or get ill yourself. If you are not the one looking after somebody but are still struggling then doing this might prompt those around you to look after themselves too and if you can then prepare some food for them to take on the go or so it is ready when they get in. Help people to look after themselves and to have the time to do the things that they need to do. If you are already cooking for yourself or popping your lunch in a box then doing an additional portion requires minimum effort.
- Appreciate every single day for what it is. I know, I know. Life is horrible right now and you would rather go to bed and forget that it ever happened. But is that not ironic? Imagine how the person that can barely remember your name must feel when they get into bed? They forget what they had for dinner and the way to the bathroom. Nobody knows what is around the corner and however difficult it might be one day you are going to wake up and they will be gone. Sure you will have less things to worry about and you will no longer have to think about the every need of that person but they will be gone. No longer will you hear those jumbled stories, have them get you confused with your parents or sibling and suddenly your life will go from hectic to strangely empty. Do not wish the days away because all life is so precious. Sure these days are tough and tiring and far from how you imagined them to be but it is your life and whatever happens today will shape tomorrow.
I get it. Life is tough right now and everybody around you is focussed on their own thing and their own problems. You feel alone and want to give up and hide yourself in a hole rather than accepting the situation, that you are struggling and that you cannot manage everything in life alone right now. I want to say it will get easier and life will get better but that would be a lie but life will not always be like this and there are ways and people to help you manage.
Look after yourselves, look after others and cry if you have to but please seek help whether that be for caring, your emotions or balancing out everything you have to do. I love you, the people around you love you and even though they might not know who you are the person with dementia looks at you and knows that, whoever you are, they love you for some strange reason.
If you want a conclusion to my story then I can only bring you sadness. My Great Grandma’s fight was a pretty short one and it was all over just as quickly as it felt like it began. It has shaped me and it has taught me a lot on how to approach dementia and other sufferers. It is tough to be around them because of my memories but dementia is becoming increasingly common and we all need to push those memories aside to look after those in the present.