Short animated film about dementia - would love some insight!

[JoshM]

Hi everyone, I hope this is in the right forum but here goes!

My name is Josh and I have just graduated from university having studied computer animation. During my first year my grandad passed away after suffering from Alzheimer's disease for over 10 years and recently i made the decision to create a short animated film on the subject (which, thankfully my parents are supporting me in, by letting me live at home!)

I have recorded an interview with my grandma who acted as a full time carer for the majority of the disease and it really struck me that the most painful aspect of the disease seems to be how it affects relationships between the sufferer and their loved ones and friends. I am making this the focus of my film, which is why i am posting here!

I was wondering if anyone would be willing to just share some personal experiences and things that you think would be relevant or helpful towards the creation of this film, as i understand everyone's experience differs. I'm currently in pre-production, drawing the storyboards and planning out the staging, so I'm at a point where having more and more input from people is really helpful, and, other than my family (who are all helping me already) I don't really know anyone else to discuss it with.

It could really be anything, for example, one thing that my mum and my grandma both talked about was how music was really great for calming him down when he got confused and agitated by not knowing where he was/who was with him etc. Just little things like this are really helpful when trying to form a picture of what it is like for the family and friends closest to people with Alzheimer's.

Anyway, thanks in advance to anyone who responds to this, all help is really appreciated!

Josh.

 

[Helen33]

Dear Josh,

I noticed that you don't have any replies to your queries and I was wondering whether it is because it could mean work for people who are very up to their neck in their caring capacity? Perhaps you could think about approaching your needs in a different way. What about you doing the work by reading some of the threads scouring for what it is that you are looking for and then asking the poster if they would be willing to give permission for you to use this information?

I hope my suggestion is helpful to you and that it enables you to get what you need.

Best wishes

 

[JoshM]

thanks for the suggestion!

I am currently doing just that, but I figured I'd stick up this thread while I was at it just in case

currently doing most of my research through books and searching forums like these, got some really helpful stuff so far, but thought I'd see if inquiring would bring out any specific thoughts from people.

 

[Izzy]

I think one of the hardest things for me has been the gradual shift from wife to wife/carer and knowing that the balance will gradually shift to being more carer than wife. That's hard after almost 34 years of marriage.

 

[jeany123]

The thing that i find hardest is having all the responsibility of everyday things having all the bills to sort out, appointments to make and keep ,and other things that have to be done on my own, as well as caring for my husband who is 65 and has vascular dementia,

 

[JoshM]

Thank you so much Izzy and Jeany123 for the insight, everything here is actually really helpful. The shift from wife to carer was certainly something that was very difficult for my grandma too, and it's something I am going to try to emphasize in my film.

Again, thank you all!

 

[supporter1]

My father is currently in an emi assessment ward, I have had 2 visits that have been good recently .

The first one I took with me one of my dogs ( the friendliest but calm one) and the change in my dad was wonderful to see, My dog was so pleased to see him and they shared a moment of how my dad used to be , smiling and stroking my dogs head in return my dog thrusting his head under his hand for more affection. My dad remembers that I have dogs and had said to the nurses when they said I was visiting that he hoped I would bring one of the dogs ,

The second visit was yesterday. I drive for hours to get there and was really hungry when I got there so bought some fish and chips so for me and some for dad. We had a fish and chip lunch together on the ward , the nurses laughed and smiled as much as we both did . He told me that he had not had fish and chips for months but the nurses said he gets it every friday having no short term memory ment it was a special treat .

 

[jasmineflower]

I think that frustration is an emotion which is a recurring theme for both the carers and for the person with dementia.

The family that is trying to support their relative is so frustrated when their attempts to help are thrown back in their face with aggression; or once they have sought professional help their relative sits there looking as normal as they ever were and calmly declares that there is nothing wrong with them and they don't need help. At which point the professionals run as fast as they can out of the door with relief that they their budget won't be stretched further.

In the same way, the person with dementia is frustrated because they don't believe that there is anything wrong with them and can't understand why they are expected to let strangers into their house each day to look after them, when they genuinely believe that they are eating, cleaning and washing as they always used to - even though the fridge is filled with rotting food and there are soiled clothes hidden in corners all over the house.

I think this is why the title of so many threads in Talking Point is: I Can't Cope Any Longer!!

Don't know if this is any help, but thought I'd mention it.

 

[JoshM]

My father is currently in an emi assessment ward, I have had 2 visits that have been good recently .

The first one I took with me one of my dogs ( the friendliest but calm one) and the change in my dad was wonderful to see, My dog was so pleased to see him and they shared a moment of how my dad used to be , smiling and stroking my dogs head in return my dog thrusting his head under his hand for more affection. My dad remembers that I have dogs and had said to the nurses when they said I was visiting that he hoped I would bring one of the dogs ,

The second visit was yesterday. I drive for hours to get there and was really hungry when I got there so bought some fish and chips so for me and some for dad. We had a fish and chip lunch together on the ward , the nurses laughed and smiled as much as we both did . He told me that he had not had fish and chips for months but the nurses said he gets it every friday having no short term memory ment it was a special treat .

I only saw my grandad once after he went into a care home, as he and my grandma moved down south away from us (to be closer to other family they hadn't seen much of). I had been told that it would likely be the last time I see him and it was this visit where i realised he had no idea who i was.... it was the strangest, saddest thing i have ever experienced. Thanks for sharing your thoughts with me.

I think that frustration is an emotion which is a recurring theme for both the carers and for the person with dementia.

The family that is trying to support their relative is so frustrated when their attempts to help are thrown back in their face with aggression; or once they have sought professional help their relative sits there looking as normal as they ever were and calmly declares that there is nothing wrong with them and they don't need help. At which point the professionals run as fast as they can out of the door with relief that they their budget won't be stretched further.

In the same way, the person with dementia is frustrated because they don't believe that there is anything wrong with them and can't understand why they are expected to let strangers into their house each day to look after them, when they genuinely believe that they are eating, cleaning and washing as they always used to - even though the fridge is filled with rotting food and there are soiled clothes hidden in corners all over the house.

I think this is why the title of so many threads in Talking Point is: I Can't Cope Any Longer!!

Don't know if this is any help, but thought I'd mention it.

This sounds very familiar to the experience my grandma had while looking after her husband, along with the frustration was the guilt, due to the fact that she was getting frustrated at him for various things and yet she knew he couldn't help it. She really must have had the patience of a saint because this went on 24/7 for years. Again, thank you for sharing!

 

[Wabbit]

Hi Josh,

My father had AD for many years, but we didn't know. Not having had any experience of it whatever, we put his increasingly odd behaviour down to old age. He suffered badly from arthritis, but was very independent and would regularly take himself off to see the doctor. He was on lots of different medicines, but my mum dealt with all this and we just assumed it was treatment for his arthritis.

It was only when he fell and broke his hip and, after a spell in hospital, was sent to a nursing home (an hour's drive from home) for respite care that we found out. We arrived to visit him after his transfer there and were told: "You'll find him in room x in the (locked) Alzheimer's wing". We looked at one another in astonishment and said in unison: "Alzheimer's?, but dad hasn't got Alzheimer's." The nurse responded by giving us a look that said: "Are you mad?"

We found him in his own small bedroom with private bathroom - no pictures, no television, no radio - nothing. He saw no one except the carers morning and evening and catering staff who delivered a tray and took it away again. If he called for help, nobody could hear him. Lights were on outside several rooms, but there was no sign of any nurses. We had to ring a buzzer to get out and waited 20 minutes before anyone responded. In desperation, we tried windows and doors in the dining room and along the corridor, but could find no means of escape - what would happen if there were a fire, we wondered? When we eventually emerged from this wing into the reception area, we found 5 or 6 nursing staff sitting in a room chatting and drinking tea.

Dad cried and begged me to take him home. It was heartbreaking - especially since it was Christmas Eve. He never did get back home. Eventually, we managed to get him a place in a nursing home nearer to us, where he was drugged to the eyeballs and died 18 months later. My dad got the very worst of treatment and it is something I bitterly regret. Had I known what I know today, it would never have happened.

Another thing that bothers me is the fact that my mum was left to look after dad unassisted. I was abroad and didn't know what was going on, as both mum and dad were in denial about his AD. The stress of it all nearly killed her too.

AD is devastating for the sufferer and for everyone close to them and if you couldn't laugh sometimes you'd go crazy. Fortunately, the disease is such that it does present opportunities for laughter. I witnessed the following:

Situation: my dad is in bed. Mum, who has macular degeneration + cataracts (of which we are unaware!) arrives with his breakfast - large mug of tea in one hand, small plate with two slices of buttered toast in the other. She trudges round the end of the bed spilling tea from the cup as she goes and with the plate tilting dangerously towards the floor. Eventually, the toast slides off the plate, she tramps it into the carpet and doesn't notice a thing. She sets down the mug and plate and returns downstairs. An hour or two later, she goes back upstairs and comes down in a rage: "That man has me driven crazy. He thinks I'm a teenager, trooping up and down the stairs all day, tending to his every need. And now he tells me he got no breakfast and wants tea and toast - again - when I brought him his breakfast an hour ago!"

Anyway, Josh, I think you should transfer your posting to the TP page and you'll get more response. Good luck with your animation project - Wabbit

 

[JoshM]

My father had AD for many years, but we didn't know. Not having had any experience of it whatever, we put his increasingly odd behaviour down to old age.

I think we did the same thing at first as well, this is something that I'm trying to bring into my film, the moment of recognition that something is not right.

for us this came when my grandma called my mum to discuss something about a bank statement related to their house in france. My grandparents were both out in france at the time, and 5 minutes after the call my grandad would just not accept that they had spoken on the phone and got really quite angry about it. eventually my mum spoke to him to try and convince him that they had spoken, but he still wouldn't have any of it.

I think it was when they got back home that he went to the doctors to get tested.

thanks for sharing Wabbit!

 

[NeverGiveUp]

Josh
If you haven't finalised things, have a look at Sundowning, it is a facet of dementia that is inexplicable to those who haven't experienced it. The sudden personality changes as the day wears on, I have wondered if it was what happened years ago when people were said to be possessed.

I feel that there is a serious contribution to be made in understanding dementia and making the world at large aware of it. One of the worst days of my life happened when mum got out into the garden, started screaming for help, shouting that she had been assaulted (she hadn't been assaulted) and for someone to call the police. I learned a lot about human nature that day. No-one called the police, our GP surgery wouldn't help as it was 5.55 and the locum was going home, Social services wouldn't help as we han't had a financial assessment. I called an ambulance, they called the police to meet them at our home as it was 'a domestic' (my parents are in their 90s with no history of 'domestics'). Mum was taken to hospital, the neighbours got something to gossip about "loadsa blue light activity" one was supposed to have said. That evening 2 local women stood on our drive and started jeering at me, the sort of thing you see as criminals leave court. Our world fell apart that day, something will never recover, not just neighbours ignoring us. No-one prepared us for mum's behaviour, nor did it prepare us for the reaction of our neighbours.

 

[Jancis]

Hi Josh,
I'm very interested in your film and hope we'll be able to have a preview when it's finished. I think a young person's perspective of dementia is fundamentally important to help raise awareness.

Have you taken a look at the poems section on this forum? Although some appear rather abstract in meaning I think you may be inspired by many for their loving spirit and sentiments.

 

[JoshM]

Hi Josh,
I'm very interested in your film and hope we'll be able to have a preview when it's finished. I think a young person's perspective of dementia is fundamentally important to help raise awareness.

Have you taken a look at the poems section on this forum? Although some appear rather abstract in meaning I think you may be inspired by many for their loving spirit and sentiments.

I haven't actually checked out the poems section yet, though it's on my to-do list, it sounds really interesting. Work on the storyboard is coming along really well and I'm quite close to having a finished version. I am actually working with a friend on this project who will be composing and recording the soundtrack, so I'm looking forward to hearing how his music affects the tone of the film. Certainly, when things have come along a bit, I'll be sure to put a link in here somewhere for you all to see how progress is coming along.

All the feedback in this thread so far has been HUGELY helpful, so thank you all for helping me out with this, i really do appreciate it!

 

[NewKid]

Have film script looking for a film maker

Hi Josh
I recently completed an MA in Creative Writing and wrote a short film. It reflects the experience of my dad, who was carer for my Mum who has AZ. My Dad suffered a stroke and subsequently died .. my Mum is now in residential care.

My short-film comes from the angle of how dependent AZ sufferers are on their carers, and the strain this puts on elderly carers. Put it this way, if my Mum had been mentally and emotionally aware of the severity of my Dad's condition when he lay helpless on the kitchen floor for 48 hours... he may have had a chance of survival.

Any interest? It is a 10-minute long script and would be a low-budget production.

What uni are you at?

 

[JoshM]

Hi Josh
I recently completed an MA in Creative Writing and wrote a short film. It reflects the experience of my dad, who was carer for my Mum who has AZ. My Dad suffered a stroke and subsequently died .. my Mum is now in residential care.

My short-film comes from the angle of how dependent AZ sufferers are on their carers, and the strain this puts on elderly carers. Put it this way, if my Mum had been mentally and emotionally aware of the severity of my Dad's condition when he lay helpless on the kitchen floor for 48 hours... he may have had a chance of survival.

Any interest? It is a 10-minute long script and would be a low-budget production.

What uni are you at?

Hey, I graduated from Teesside University in May (BA Computer Animation). The film I am currently making is an animation, and as such I will be interpreting the disease in a different way, visually speaking.... however, I am VERY interested in what you've done. I don't have a lot of experience working with live action, but I'm always up for trying something new.

Obviously, something like this is quite a large undertaking, even for a short film, but if you want to discuss it further, feel free to PM me some contact details (email or something...) and I'll get in touch with you!

 

[Ballettoes]

Hello guys

Hey, I graduated from Teesside University in May (BA Computer Animation). The film I am currently making is an animation, and as such I will be interpreting the disease in a different way, visually speaking.... however, I am VERY interested in what you've done. I don't have a lot of experience working with live action, but I'm always up for trying something new.

Obviously, something like this is quite a large undertaking, even for a short film, but if you want to discuss it further, feel free to PM me some contact details (email or something...) and I'll get in touch with you!

Hi! my son is a recent graduate from Teesside uni and he also is very interested in and has made some short films.
Its such a good idea I'm looking forward to your finished work (together or separate pieces). Good luck!

 

[Wabbit]

Hello again Josh,

Glad to see that some others have replied to your posting and that you're making progress with your animation. Don't know if you're a Guardian reader, but Rebecca Ley writes a column in it every Saturday (Family section - just inside back cover) about her father's journey into dementia. It's very moving. You can also follow her on Twitter @rebeccahelenley - which you'll no doubt be more familiar with than me . Hope it's useful.

Best wishes,
Wabbit