carer stories from the web
A range of stories articulating a range of experiences as carers. Some will resonate with you, others won't. As you read them, we encourage you to honour these carer experiences, to hold them lightly, they reveal many sides of caring and we love that people present all of these. We want too want to show that dementia enables profound and deep experiences of life. We hope they are insightful and maybe helpful.
Click on the title of each story and it will send you to the stories on another webpage
'When memory disappears, something more than memory gets lost. This is how a world begins to unravel – and how caregivers unwittingly become part of the chaos. In November 2010, when I was 25 years old, I moved in with a man who was 98.'
Susan’s story was highlighted for the UK’s 2015 National Carer’s Day. It provides good insights into how she managed her day looking after her mother.
By Susan Schneider Williams, Robin Williams’ wife
A daughter reflecting on her mothers experience of dementia and passing away
‘I started this at about 2:30 a.m. and it is now past 4 a.m. but it has been helpful for me to write my story’.
Examples of Montessori activities Thelma's mum does with her
She grips my hand and tows me behind her around the small courtyard garden, past the pretend bus stop and the red phone box with no dialling tone, down an alleyway of gravel that leads to a wooden gate. “Here,” she says. “It may be locked.”
Guardian Journalist, Sarah Boseley, tells stories of her experiences with her mum and then moves onto discuss many aspects of dementia care.
This is a video series made over a year by a son whose mother had Lewy Body Dementia. He hated seeing her suffering but said in his final video about her,
'my mother robbed dementia - she reached thousands of people . . . I don't want people to think of my mother as a victim of a disease . . . but as a warrior'.
There are 55 episodes documenting some of what Molly's and Joe's life was together.
Read about Molly's Movement, an organsitation that has sprung up out of these videos HERE.
This is an interview with a woman, Beth, who cared for her mother with Alzheimer's. The interview appears on Carlen Maddux's website who has also written a book who cared for his wife with Alzheimer's.
Beth also has her own website, cargiversunite.org.
' . . .sometimes you find yourself lying to the same person who taught you to tell the truth. Because you love them.
Because you don’t want them to stress . . . Because you don’t want them to worry about why their husband is late. Because sometimes dementia changes the rules of relationships. And we adjust....'
MJ's mother and father are deaf, her mother developed dementia as she herself was caring for her mother.
MJ's mum often does not remember that MJ is her daughter. Watch as MJ slowly and patiently signs with her mother until her mum realises she 'gave birth to' her.
Watch a longer interview with MJ on the Dementia Centre website run by HammondCare HERE.
Compilations of Stories
This is an article on dementia carers' stories being taken on a tour around Central West NSW in 2017. There are excerpts from the stories. They are simple, beautiful and insightful.
Based in Glasgow, Scotland. This page compiles stories from carers.
Films in Arabic, Cantonese, Hindi, Mandarin and Tamil. English speakers can also understand the films as the carers eiether speak in English or there are subtitles.
Real stories about people with dementia and their carers and links to dementia blogs and forums from around the world.
This is a Canadian filmed released in late 2018. It follows 7 family carers of persons diagnosed with dementia. It is not in the public sphere at this time, however hosting of screenings can be booked.
The hiddeness of the disease - this song was written for this man's stepson who has autism. He talks about the vulnerability that comes with the hiddenness of the disease. We thought it related well to the experience of having dementia. Have a listen if you can.
Stories from carers:
Not formatted well yet, but there are small quotes from carers.
A report compiled by the NFWI calling upon government and the NHS
to improve dementia care in hospitals and allow families greater access to wards. 221 carers were interviewed.
Stories from carers:
Some quotes and stories are included. Stories/quotes located on pages; 11-14, 16-19, 21-25, 28-29