Please Don’t Forget – A Dementia Photographic Documentary
In loving memory of my Papa, Jimmy Sleith
(15th July 1927 – 14th Feb 2016)
As a grandaughter and photographer, it was an extremely difficult decision to make about choosing this as a documentary. In the end I decided to pursue it. I hope it will give people a better understanding on what life with dementia can be like for a family. I wanted to capture both the happy and sad times. As well as showing a side that people do not always see or experience first hand. At the same time I wanted to keep my papa’s dignity, which is why certain areas of care I felt was not appropriate to include, such as personal care. The large majority of the images have been captured between August and December 2015.
I have included some other images from throughout his life, along with some stories, quotes as well as my own personal views along the way.
This is my papa, James Salmond Sleith AKA Jimmy. He was born 15th July 1927 in New Stevenston, Scotland. In his 88 years, so far, he has probably done and seen more things than most people have in a lifetime. Groovy has survived a World War, travelled the world, especially the Far East during his time in the Navy. During his time he has been married/ widowed twice. Raised a family. He was even Santa Claus in Asda, Motherwell. He has dedicated a 65 years to date both the Orange Lodge and Masons. As well as everything else, he was Chaplin for New Stevenston Orange Lodge for over 30 years.
Anyone who has met Jimmy, knows that his sense of humour is on of his best features. He loves to laugh and can brighten any day. Before dementia he was known locally for always being well dressed. Even going to the shops, he would always have a suit on. At my 18th he arrived in a grey suit, pink shirt, socks and handkerchief. At that moment he was nicknamed the Groovy Grandad.
Best thing of all is that he is not only my papa but also my best friend and we are like two peas in a pod.
When I was living abroad for three years, I would phone every week to update Groovy on my adventures. I noticed when talking to him that some conversations would be repeated straight after we had talked about it. I did not think much about it at first, then over the months it appeared to be getting worse. Family back in Scotland began to notice a change in him too.
In early 2011, he was diagnosed with dementia. I do not think as a family we really understood the extent of what the future was going to entail. Health professionals that we would meet would rhyme off words and phrases like, dementia, “Power of Attorney” and most commonly used “it’s always harder for the family”. But nobody really explained what this all meant.
Four years on, I do not think anyone could have prepared us for how difficult this journey so far, has been. It makes me cherish all the moments we have together and each day that he continues to remember who I am, I am always thankful.
Personally I feel the most difficult part of caring for a loved one with dementia, is that the person you know and love disappears over time as their memories fade away. I always try and strong in front of Groovy and not become upset. However, as much as he is physically here, we as a family are still trying to cope with ambiguous grief for the papa he once was.
The hardest part of coping with a loved one that has dementia, is that its not going to get any easier, it is just going to get harder and harder. More often than not, a little more of the old Groovy slips away. Occasionally a slight glimmer of hope will appear when he remembers something like a conversation you have had time and time again recently. It’s difficult having to mentally prepare yourself for that day you could go in and he won’t know who you are (because you are warned the closest loved ones, tend to be the ones they forget first) and being thankful for another day that passes by and he remembers who you are.
From the moment a family is told their love one has dementia and with all the information and support in the world, it can never fully prepare you for the heartache that you will inevitably feel.
I just ask, please Groovy do not forget me.
“When we went on our honeymoon, we didn’t want people to know we were newly weds. We found our seats on the carriage of the train which were opposite each other . I went to take my suit jacket off as it was warm and all the confetti fell out from inside.
Well, the passengers realised we were just married they moved to let us sit next to each other. One of the passengers had a banjo and everyone started celebrating. I had a bottle of whisky in my bag, which got opened too. We laughed, sang and celebrated the whole way to Corby. “
Dementia effects the short term memory, which means that memories from years ago, especially when he was younger are a lot clearer than what he did that day. It is similar to their life re-winding back in time. The only nice thing about this is that I have been told stories I have never heard before and others that I have heard a million times before being told life it was the first time.
“Would you like to go a walk and I will push you in the wheelchair? “
“No, wheelchairs are for old people”
After eight failed attempts to leave the house, as he would forget he had been to the toilet, that his hair was combed and he had his wallet, we finally manage to go a walk with Groovy in the wheelchair.
“Do you have pain Mr Sleith?”
” No, not really, just growing pains.”
Dementia patient’s health is not always great. A slight urine infection or fall can have a huge effect. During his time in hospital, his memory becomes a lot worse. It’s difficult to try and be strong in front of him, especially when he becomes so helpless and more confused. The only blessing is that he does not remember how sick he becomes.
Sometimes no words are said, Groovy will just sit in silence and appear to be lost in thoughts.
It’s amazing the stories that can be told over some grapes when he has a good day.
” What did you have for dinner”
” eh….. I cannae remember, but it was good”.
This is the conversation we have every day we ask what he had to eat. Sometimes his memory can be so bad, that he will eat his meal and forget within moments of the plate being taken away.
“Where have you gone? I can’t see you!”
Over the past few months he has started to put the blanket over his head and within a few moments he becomes confused asking where I have gone. It is just like he is going back to child like behaviour.
” Do I have any mail? Oh, that’s right, nobody writes letters these days.”
Everyday Groovy asks several times if he had any mail, so I asked people to send him letters, pictures and cards by post. This helped reduce the number of times he asked about the post and brought a smile to his face.
“How are you today?”
“I’ve lost my sausages, I cooked them and can’t remember where I put them”
Getting ready to leave to go into respite care for a week, while new kitchen is fitted.
Every week my Dad would go food shopping for papa. Even though the cupboards, fridge and freezer were full, Groovy would still go to the local shop around the corner to buy the same things each day. Neighbours would complain to us about letting him carry heavy bags himself and thought we did not do shopping for him. As much as they were quick to judge, they did not understand that the house was full of food, there was many of the exact same tin lined up in the Cupboards. We would tell Papa time and time again that he did not need any more from the shops, but he would forget. We even asked the shopkeeper to not serve him, but he said he could do no such thing he would continue to serve him.
Making his way to the car to go to the care home. From the moment he left the house to his room in the home he just kept singing ‘ I want to go home’.
“When I was in China I bought a toy gun to bring back for the kids. Later that day there was a manhunt for someone going round the streets with a gun. It turns out it was me they were looking for.
A woman had to hide me behind the wall in her house, but I still ended up in the jail over night.
The curfew for getting back to base was 7 o’clock and I was released at 3 minutes to. Oh, I ran so fast through the streets and I still made it back in time. “
“I remember when I first arrived in Sri Lanka. I was given the biggest fruit sundae. Sugar and fruit wasn’t rationed out there. It was huge… and I ate every part of it”
Moments together are always treasured, even if it is just going down the corridor for a cup of tea and a chat.
“Why are you all waiting out there? Just come in and take a seat”
” but Papa… you’re in the toilet”
From time to time, Groovy will go and sit in the bathroom and forget where he is, he thinks it is a chair in a normal room. He cannot understand why we are all waiting on the other side of the door for him.
“Where’s all the toilet rolls gone?”
“I don’t remember, but here’s a Daily Record”
In one week alone, we lost a multi pack of toilet roll in Groovy’s house. It turns out Groovy was hiding them and would cut up newspaper into perfect squares and leave it next to the toilet. The reason for this behaviour is that he has gone back to the memories where toilet roll was a luxury item. During these times toilet roll would be put away for special occasions and a newspaper would be used instead.
N.B The Cooker has been disconnected for safety reasons.
Simple tasks like making a jam sandwich can be a challenge. They understand there is a process to follow, but some of the steps along the way can become slightly muddled. One day we found Groovy trying to make himself a sandwich but had confused the Jam with Pasta Sauce.
Every Tuesday his cleaner Kelly puts music on from Groovy’s prime. They then have a dance around the living room. Music can help Dementia patients by increasing a positive change in mood and recalling memories.
“Where’s your zimmer?”
“B*gger if I know”
Simple daily tasks like remembering his Zimmer frame can be a challenge. This can also be extremely dangerous when he forgets, as the risk of falls is increased.
“See you tomorrow Groovy!”
“All being well, Honey”
A huge thank you to everyone, including my partner Neale, family and friends who have supported and helped me. Not only has everyone been there with throughout this documentary project. I appreciate those being there for me during hard times with Groovy. Even if it was just a shoulder to cry on or laugh at funny stories it has meant a lot to me. It has not been the easiest project that I have carried out, especially as it has been photographing someone very close to my heart.
I’d like to thank my class and lecturers for encouraging me to pursue this for my documentary project. It has gave me a better understanding about Dementia. It has gave me an opportunity to learn more about Groovy’s life. This, I will forever cherish these moments he has shared with me.
I’d like to say a special thanks to Lorna Hart from Alzheimer Scotland who helped with giving me facts and a better understanding of dementia and how people can live better with it.
Finally, thank you to Bryan Turnbull who stepped in as a model for my cover image when Groovy was too poorly in hospital to do so himself.
( Since the book was first printed, the global media have shown fantastic support, more stories can be found here)