Lucy Williams Photography
PORTRAIT + LIFESTYLE BRAND PHOTOGRAPHER
2014
For a couple of years Dad had been having problems with his balance and being able to get his words out. His personality also changed and he lost interest in the things he loved doing. He became prone to unexpected violent outbursts and lewd behaviour. At first the doctor thought it was depression, then that Dad had suffered a series of tiny vascular strokes - he was treated for that for a year. In Oct 2014 he was diagnosed with FTDP17 which is a rare form of dementia that affects the frontal temporal lobes of the brain. It was a big shock for everyone. It is terminal and there is no cure.
December 2014
Dad has been looking after Mum after her operation, but in reality he's the one that's most vulnerable. He tries to make her cups of tea but the whole process takes him over half an hour. Mum says she hasn't had a warm meal in weeks.
December 2014
The first Christmas after Dad's diagnosis. It's been emotional. Mum is having to come to terms with the full significance of Dad having a terminal illness, whilst Dad doesn't fully understand what is happening to him. He has all sorts of behaviours which he catches himself doing and then gets very upset because he doesn't know why he's doing them. They upset Mum too. Lights off-on-off-on-off-on, door open-shut-open-shut-open-shut etc can be irritating - and then there's guilt, for feeling irritated at something that's not Dad's fault. Dad was always so able and took care of Mum, they'd planned growing old together, and she's angry and desperately sad that she's losing him. I read somewhere that doctors say that when they treat someone with dementia they often end up treating two people, the person with dementia and the one caring for the person with dementia.
December 2014
Having dementia can make it difficult to take part and enjoy things like you once did. Dad used to love pub quiz. He often seems lost in his own world now, and it must be very isolating for him.
My Mum and Dad had never been to Paris. When Dad was diagnosed with dementia she said she'd love to go with him whilst it was still possible. My sister and I went too to help them get around, it has been so precious spending those days with them both, and my sister, but with him especially. It's tough dealing with the decline of a person you love but I'm more clear than anything that despite the challenges and sadness they still have the most beautiful romance. This photo makes me smile a lot.
This is my Dad, but it's not my Dad's face. It's the face of Dad tinged with dementia. Someone less familiar with him would probably not be aware but I know there is something missing in the way his face is now. It's imperceptible but I see it. I look at him more now, I notice the changes.
March 2015
I tried to take a picture of them but Dad couldn't smile. His motor skills are diminishing and it makes smiling on demand a challenge. He tried really hard to do it and grimaced more and more until it ended up making us all burst out laughing, even him.
March 2015
Dad's gets a lot of headaches. His sensitivity to noise and light has changed. The world is becoming more and more intense. Too much noise, too much bustle. Light and shadow that makes his world confusing and hard to navigate. It makes his head hurt.
March 2015
Anxiety is a major symptom of dementia. Being away from home, and out of his normal routines means that Dad feels more vulnerable and anxious. We do our best to reassure him and give him advance notice of plans and arrangements. And give him lots of hugs and love.
April 2015
Dad gets so tired, It's one of the symptoms of dementia. Noisy places with lots going on are hard going for him, as is communicating. Because sentences are virtually impossible now conversations with dad are like gold dust. We talk whilst he still has words.
April 2015
Dad signing Power of Attorney over to us. A lasting power of attorney is a legal document that lets a person appoint one or more people to help make decisions on their behalf. Right now, Dad can still make most decisions but the reality is that soon he won't be able to.
June 2015
Sometimes now, with dementia, Dad's eyes are blank so I love seeing the sparkle in them when he's back with us.
June 2015
Dad loves his coffee. Latte with an extra shot. Now that he has dementia and there's less he's able to do, going for a coffee is a real treat. The process of putting the sugar in the cup takes a long time. A very patient barista warmed up Dad's coffee twice whilst we were there.
June 2015
Dad is not allowed to drive anymore. He's devastated. He loves driving. For some time he's been losing concentration whilst driving and we've all been terrified of what might happen. The last time we went to the doctor with dad we explained our concerns, the doctor asked Dad 'are you experiencing any problems driving?' and Dad said no. From then it was even harder to have conversations with Dad about stopping. In the end, my sister told Dad's consultant and that was it, he wasn't allowed to drive anymore. Dad didn't speak to my sister for weeks. Being the relative of someone with dementia means you sometimes have to make hard decisions for them when they feel perfectly able to make that decision for themselves.
October 2015
Now dementia & Parkinsonism has really taken hold he struggles to do up buttons and zips and belts. It's hard for him to get dressed properly. Mum always finishes him off and makes sure he's presentable. Despite grieving for the man he once was she is slowly coming to terms with his illness. We all look for the man he still is and despite his decline he's still there and there are lots of lovely humorous moments alongside the harder moments. He gets sad and frustrated often and sometimes says to her 'Do you still love me?' and he cries. He knows he's changed and changing. She kisses him and reassures him. Their love for each other is so present. And I'm present to how much I love them both.
October 2015
It's important that Dad maintains as much independence as possible. It doesn't stop Mum worrying though.
October 2015
Dad's fingers are not as nimble as they once were. If he takes his phone or wallet out of his pocket he has trouble putting them back in so he keeps them in his hands, which means he can easily put them down somewhere when he gets distracted by something else. As a family we're constantly thinking of simple ways to make his life easier and less confusing. This plastic wallet has made a huge difference. He carries his phone in it and can use it through the plastic, which is brilliant. He also carries a card in it explaining that he has dementia.
October 2015
Dad tried to put a fiver in his wallet yesterday and he couldn't do it - too fiddly for his fingers - he cried in the street and asked "I'm not stupid, am I?" It was heartbreaking.
December 2015
"I have trouble with spoons these days. I don't know what to do with them". That's what Dad said at breakfast. He picks the spoon up, puts it down, picks it up again. Eventually he eats with it. I've noticed a lot of repeating behaviours this time I'm home. Lights on, off, on, off. Handles, up, down, up, down etc. He gets sad that he finds himself doing things and he doesn't know why.
December 2015
Dad is known for his smile and sense of humour. Dementia has made him sad a lot of the time. He knows that he is able to do less and less, though we reassure him all the time. Having tools like the shoe horn means he can still do things for himself that are becoming harder and harder to do.
December 2015
Mum & Dad live in a village and every morning he walks to the shops. With dementia, interacting with life can be confusing, disorientating, impatient, too fast. The people in the post office are amazing. They have a laugh with him, they're patient, they listen and help him out with what he wants, they help him put his money away safely and make sure he's good to go. He's not anonymous. The same in the small supermarket. These people give dad the gift of independence. We are so grateful to them.
January 2016
This is Dad's face shaped by dementia. He stares like this more and more often now. In between there are moments where he laughs and there's a connection and I can't tell you how beautiful that is. He says 'I'm sad all the time these days', and he cries. We find ourselves wishing he had a forgetful form of dementia, that way he might be less aware of what is happening to him. Anyway, there's no point wishing. It is what it is. On a much happier note, he loves this hat. He got it in a place called 'Williams' in Australia where one of his sisters lives. Mum and Dad visited his family in Australia just before he started getting ill and it was the first time he'd seen her for 35 years.
January 2016
When dad was well his biggest passion was transforming classic cars to their former glory. When he became ill with dementia his passions disappeared one by one. Apathy is a symptom of dementia. Now he isn't able to look after her, or drive anymore, we're selling her. My dad will be sad to see her go (and us!)
January 2016
The shoe horn is in the bathroom. Things turn up all over the place now Dad has dementia. He gets distracted midway through something and the object in his hand at the time travels with him to wherever he ends up next. Anything could end up anywhere!
February 2016
Morning routine is not quite so routine for Dad anymore. Every part of the breakfast process takes a lot of thought power, even just putting milk on his cereal is a challenge. Getting ready for the day can take hours. He often looks so lost and I want to wrap my arms so tightly around him and keep him safe.
January 2016
Dad likes to have tissues or paper napkins in his hands. He very deliberately folds and unfolds and folds them again. He puts them down, picks them up, puts them down again. Lately he bites them. When I was home at Christmas he did that and then looked at me and said 'why am I doing that?' When he catches himself doing something he doesn't understand it makes him sad. I'm a member of a dementia group on Facebook and apparently having an obsession with tissues and napkins and paper towels is very common, as is stashing them somewhere, hiding them, and sometimes eating them.
February 2016
Dad goes to the dementia cafe every week. Him and Mum have made loads of friends and there's a lot of support. It's isolating having dementia, and caring for someone with dementia, so having a welcoming community to be part of is great. Today they sang. Dad can't usually get his words out but he can when he's singing.
February 2016
Hanging out with royalty today! I went to Dementia Club with Mum & Dad. There was a ukulele band on who were brilliant, everyone sang and laughed and sang some more. It was uplifting and full of joy. Of course, there was also tea and biscuits. It wouldn't be any sort of gathering without those. Dad has a straw to drink his tea now, he doesn't often have the strength and steadiness to pick up a mug anymore.
February 2016
Dad has the most lovely smile and everyone always comments on it, and how friendly he is. We've visited Dad's Consultant today. They didn't carry out his last lumber puncture properly so the results were voided. He now needs to have another one. The lumber puncture tests to see if the dementia Dad has is genetic.
February 2016: Happy birthday Dad!
We organised a birthday lunch surrounded by friends and family. Everyone was pleased to see Dad and he was pleased to see them. It was a very happy day. When Dad was well he would most likely have felt a bit embarrassed with this balloon and badge, but since dementia has taken hold he's lost a lot of his inhibitions.
February 2016
The time we got dad drunk. With dementia it's all the tiny moments that become so precious. We took him whisky tasting at @PenderynWhisky for his birthday. He's always loved whisky and doesn't drink it much anymore now he needs help with drinking. This is him drinking a shot of aqua vitae, we said 'sip it dad', instead he had a big gulp, and shuddered and said 'SHIT!'. He made us laugh, it was such an instinctive reaction. He laughed too. It was a brief and beautiful moment and it'll make me smile forever.
June 2016
A symptom of dementia is dry eyes. Dad's eyes are constantly irritated and so they water and he looks like he's crying. He cried a lot in the first months after his diagnosis, now he often seems emotionless because his motor skills are diminishing and he's not able to express his feelings.
June 2016
Part of what Dad has is Parkinsonism. It affects one side of his body more than the other and he tends to slump over in this direction a lot. His was mid way through having a drink when he went to sleep. We bought him this fancy water bottle because he can't hold a mug anymore, it drives my Mum mad though because he flips the lid open-shut-open-shut-open-shut-open etc. Restless hands is a symptom of dementia.
October 2016
Dad keeps falling over. His balance is diminishing, another symptom of the form of dementia he has. We spent all day in A&E and they ran all the usual tests. The staff were so attentive despite being run off their feet. Some of the doctors spoke very loudly and s-l-o-w-l-y to him, like he was a bit deaf or not understanding. He understands everything though. And still has moments of being very funny and witty when he's not lost in himself and he can get a rare word out.
October 2016
Dad getting fluids after falling down some stairs. One thing we didn't know about dementia was that your immune system is affected and you are more prone to colds etc. Even in the years before Dad was diagnosed he seemed to get every cold going. Now, having a cold or infection isn't as easy to detect because Dad can't tell us if he feels poorly. Being ill has an impact on his dementia symptoms too and every time he has a cold his balance goes and he falls over.
February 2017
Dad goes into respite from time to time to give Mum a break from 24 hour care. Mum pops in to see him every day. He can't do much for himself anymore and whilst in respite this time he stopped being able to walk, which means that he needs two people or a hoist to get him out of the chair. We tried to get a hoist into the house but it was much too big, and Dad only has carer assistance twice a day for getting up and going to bed. We've been to look at local care homes because I don't think he will be able to go home again.
March 2017
Today Dad moved into the nursing home. It's been a sad day and I'm usually full of positivity, but today I'm just sad. It feels like the beginning of the end. We all miss him terribly. The love between my mum and dad is something so beautiful and gentle, it moves me so much. Living a life with someone, and getting to love them until the very end is a one of the great privileges and great tragedies of being human.
December 2017
Since Dad has been in care I've found it more and more difficult to photograph him. Normal life is sleeping in his chair a lot. He's surrounded by other residents,all of whom have dementia and different behaviours and needs. They're a colourful bunch! The care home staff buzz around and acknowledge everyone, a hello here, a pat on the arm there. It's a lovely, caring atmosphere. Of course, I can't include other residents in Dad's photos so my portraits of him are confined to his chair. He wakes up for brief periods and gazes around the room. He looks blank and can't communicate anymore but we know he still understands.
December 2017
The care home staff arranged for Mum and Dad to have Christmas dinner together in the activity room. Life is no longer like it once was but being able to spend time together as a family is really important and part of keeping life as normal as possible.
February 2018
Mum opened birthday cards with Dad today. He was mainly asleep/ not aware but she showed him each one and read all the messages nonetheless. Happy 72nd birthday Dad!
February 2018
Dad has difficulty swallowing so all of his food is minced or soft. Happily he seems to still love eating, especially sweet treats and desserts.
February 2018
Sleeping again. He always has a tear in his eye. Dry eyes are a symptom of Dementia so he often looks like he’s crying, it breaks my heart.
February 2018
Dad has his eyes closed a lot of the time, sometimes he’s asleep and sometimes he’s semi-conscious and can take a sip of his drink. He can’t swallow very easily anymore, Mum has to rub his throat to make things go down. He looks terrified and so vulnerable when he chokes.
May 2018
Dad had a big chest infection and was really, really poorly. The doctor put ‘just in case’ palliative care in place. It’s the first time we’ve had a ‘maybe this is the end’ scare and despite him having been ill for a long time it was still a shock. I realised that I don’t know what to do at ‘the end’ apart from be there so I went home to be with him and Mum. He’s remarkable though and has pulled through this one. His breathing is more even and he’s eating again. The reality is that he’ll get more infections and they’ll make him weaker each time, but for now he’s stable.
May 2018
Dad with infection.
May 2018
One of the side effects of PSP is that Dad’s tendons have seized up in his hands and he clenches his fists tightly shut. It’s impossible to unclasp them. The carers have put these special ‘gloves’ on his hands to stop his nails digging in and causing sores.
October 19th 2018
It’s Mum and Dad’s Golden Wedding Anniversary. Mum celebrated with Dad in his room and my sister Jessica made a cake. He has another infection and this time it’s looking really bad so we are all here. The palliative care nurses from St David’s Hospice Care are all in place and we are all on standby. This is probably the end.
October 20th 2018
Dad hasn’t eaten for over a week and hasn’t had fluids since yesterday.
October 22nd 2018
Our days are spent by Dad’s bedside. He sleeps a lot but between sleeping he’s quite alert and follows us with his eyes. We spend time between sadness and grief, comforting him, laughing at funny memories and happier times, doing the crossword, holding his hand, catching up with emails, chatting with visitors, and drinking endless cups of tea and coffee. This routine has become the new normal.
October 24th 2018
Carers and nurses pop in and out to make Dad comfortable. They swab his mouth with cold water and top up his medicines. He’s on Diamorphine for the pain, Hyoscine to clear his chest, and Midazolam to ease his anxiety. He can’t communicate but he shakes and frowns quite often and looks really scared. We worry he’s suffering and it’s agonising not be able to do anything to help.
October 2018
Before he got this infection Dad had a bang on his hand. His skin is so thin that it caused quite a cut but it’s healing really well. It’s really odd to think that as his body is dying, it’s also healing itself.
October 24th 2018
Tonight I’m keeping a vigil by Dad’s bed. Between us and the St Davids nurses (and care home staff) Dad has someone with him 24-7, we don’t want him to be alone. Every hour I spend 10 minutes outside his room whilst the care staff come and give him a freshen up and adjust his position. When I’m with him I stroke his hand and sometimes I sing to him.
October 25th 2018
They asked us to get some clothes ready for him to wear when he dies. We’ve chosen a smart pair of jogging bottoms (he hasn’t been able to wear proper trousers for a long time), the t-shirt he wore to my wedding and stripy socks.
October 27th 2018
Dad’s not eaten for nearly two weeks nor had any fluids for eight days.
I know there are laws and ethics around assisted death but dying a long, slow, lingering death has got to be the most inhumane thing I’ve ever experienced. Dad is on drugs to keep him comfortable as his body very slowly shuts down. The drugs are a blessing but this death isn’t. I don’t understand how we can let people go like this.
October 2018
We are all exhausted and surviving on very little sleep so, if we can, we try and grab a nap during the day. We try and encourage Mum to sleep in particular, she’s not sleeping at night at all.
October 2018
His breathing is shallow and laboured. There’s nothing we can do but wait.
October 28th 2018
Sign In, sign out. Another morning after another night after another day by Dad’s bedside. We are living on microwave meals and take out coffees and if it wasn’t for the sign in book I’d have no idea what day it was.
October 28th 2018
We’ve researched end of life symptoms so we’re aware of the signs. Thing is, it’s not that simple and death doesn’t run a set course, at times he’s looked like he has no more than a few hours left, at other times like he could be up and about again soon. We don’t want him to die, and we do want him to die because we don’t want him to suffer anymore. We lurch between intense emotions from moment to moment.
October 28th 2018
We hold him and tell him that we’ve got him, that we love him and we know he loves us, and that it’s okay to go now, to close his eyes and go to sleep.
October 29th 2018
Dad died today at 5am. The nurse called us at 2.30am and we were able to be with him when he passed away.
January 2019
I always knew that this set of photos would come to a close at the end of Dad’s life and it’s taken me a couple of months to get these last few photos up. I had no idea how hard it would be to relive his final days and I didn’t want to say goodbye again. I know that Dad would want this seen through to the end though and I know that he would want the opportunity to turn his experience of a horrible disease into a story that might make a difference and at the very least start conversations about Dementia. So, this is the final photo as we shut the door to the room where we spent the last weeks of his life together.
As soon as Dad died we said our goodbyes and then his body was rushed off to the hospital. He donated his brain and his spinal cord to Brace Dementia Research. A few weeks later we held his funeral on a beautiful November day, we read poems, played his favourite songs, and raised a glass of whisky in his honour.
This is for you Dad, with all my love xxx