Caroline Boxall's Blog
January 20, 2025
The Horror of Early Onset Dementia
Sadly, in my family, the expression ‘early onset’ is one we know only too well. There are certain illnesses which are considered old people’s conditions. When somebody young is diagnosed with an old person’s condition it is particularly heartbreaking, and raising awareness of these conditions is essential. Raising money to search for a cure is imperative. This week my blog isn’t about me, my family or my book, it’s about a young lady from New York and her mum.
On Friday, one of my Instagram posts was ‘liked’ by somebody with the handle ftdalovestory. I don’t usually pay too much attention to the names of people on #Instagram but FTD is frontotemporal dementia and I wanted to see what it was all about.
I’m not going to try to tell Jacquelyn’s story, she writes it so beautifully herself. I got in touch with her right away and asked if I could share it with you. She said yes, so here it is: (If you prefer to read the actual blog post with photos, go to carolineboxall.com/post/ftd-the-horro....
JACQUELYN'S STORY
This is my mom. She’s beautiful, right? This picture was taken in April 2019. Life was good then.
My mom. How can I begin to describe her? The first word that comes to mind is “glamorous.” A woman who spent over three decades making a career in the fashion industry, her closet could compete with the Kardashians. She was always the best dressed, most put together woman, and when she’d walk in any room she made her presence known.
She had a BIG personality. She was loud, fierce, feisty, and quite the perfectionist. She believed in tough love and being great was never good enough. She would push you to be your best, and when you reached your best, she’d push you to be even better. She loved to travel, shop (endlessly), get her hair and nails done, go to the gym, and she always took great care of herself. She never looked her age, and always joked how she’s “much hotter” than other moms because they “let themselves go.”
We fought all the time. Like many mother and daughter relationships, ours was tumultuous. We would even joke that if we weren’t arguing about something, it was out of the ordinary. Mom, I miss fighting with you. I never thought I’d say those words, but I do.
Mom got diagnosed with FTD in early October 2020. She was 56. She’s different now. She’s still hilarious and loud, but doesn’t care that her Joe’s jeans won’t zip anymore, or if she spills a little coffee on her sweater. Sometimes her sweater is inside out. She doesn’t care that she cannot work anymore, or drive, or have her credit cards. She doesn’t know we just celebrated her 57th birthday a few weeks ago. But she still knows us - my dad, my brother, and myself.
We are all suffering.
FTD? We had never even heard of it. We’ve heard of dementia, we’ve heard of Alzheimer’s, but FTD? What is this silent killer and why has it invaded my family?
To those out there suffering, we hear you. To the caregivers, the siblings, the parents, friends, extended family, we hear you. We need to make some noise. We need to SCREAM. My mom can’t scream anymore, but I can, and I will.
Ma, this is for you. To everyone part of the larger FTD family, this is for you.
Jacquelyn.
And finally I can't go without mentioning my book which tries to shine a positive light on dementia through the eyes of a child. You can buy It’s Raining in Moscow and I Forgot my Umbrella on Amazon. 😊
"If you, your friends or your family are facing dementia, then get hold of a copy of this book. It has a more positive view of dementia than is usual in our society. It describes a way of coping with compassion and humour."
Don’t forget to sign up if you would like to receive my blog regularly!
#dementia #frontotemporaldementia #ftddementia #alzheimers #dementiaawareness #alzheimersawareness #caregiver #dementiacare #elderlycare #alzheimer
#blog #blogger #newblogpost #middlegrade #middlegradewriters #IndieAuthors #selfpublishing #amwriting #writersofinstagram #mommylife #daddylife #parentlife
On Friday, one of my Instagram posts was ‘liked’ by somebody with the handle ftdalovestory. I don’t usually pay too much attention to the names of people on #Instagram but FTD is frontotemporal dementia and I wanted to see what it was all about.
I’m not going to try to tell Jacquelyn’s story, she writes it so beautifully herself. I got in touch with her right away and asked if I could share it with you. She said yes, so here it is: (If you prefer to read the actual blog post with photos, go to carolineboxall.com/post/ftd-the-horro....
JACQUELYN'S STORY
This is my mom. She’s beautiful, right? This picture was taken in April 2019. Life was good then.
My mom. How can I begin to describe her? The first word that comes to mind is “glamorous.” A woman who spent over three decades making a career in the fashion industry, her closet could compete with the Kardashians. She was always the best dressed, most put together woman, and when she’d walk in any room she made her presence known.
She had a BIG personality. She was loud, fierce, feisty, and quite the perfectionist. She believed in tough love and being great was never good enough. She would push you to be your best, and when you reached your best, she’d push you to be even better. She loved to travel, shop (endlessly), get her hair and nails done, go to the gym, and she always took great care of herself. She never looked her age, and always joked how she’s “much hotter” than other moms because they “let themselves go.”
We fought all the time. Like many mother and daughter relationships, ours was tumultuous. We would even joke that if we weren’t arguing about something, it was out of the ordinary. Mom, I miss fighting with you. I never thought I’d say those words, but I do.
Mom got diagnosed with FTD in early October 2020. She was 56. She’s different now. She’s still hilarious and loud, but doesn’t care that her Joe’s jeans won’t zip anymore, or if she spills a little coffee on her sweater. Sometimes her sweater is inside out. She doesn’t care that she cannot work anymore, or drive, or have her credit cards. She doesn’t know we just celebrated her 57th birthday a few weeks ago. But she still knows us - my dad, my brother, and myself.
We are all suffering.
FTD? We had never even heard of it. We’ve heard of dementia, we’ve heard of Alzheimer’s, but FTD? What is this silent killer and why has it invaded my family?
To those out there suffering, we hear you. To the caregivers, the siblings, the parents, friends, extended family, we hear you. We need to make some noise. We need to SCREAM. My mom can’t scream anymore, but I can, and I will.
Ma, this is for you. To everyone part of the larger FTD family, this is for you.
Jacquelyn.
And finally I can't go without mentioning my book which tries to shine a positive light on dementia through the eyes of a child. You can buy It’s Raining in Moscow and I Forgot my Umbrella on Amazon. 😊
"If you, your friends or your family are facing dementia, then get hold of a copy of this book. It has a more positive view of dementia than is usual in our society. It describes a way of coping with compassion and humour."
Don’t forget to sign up if you would like to receive my blog regularly!
#dementia #frontotemporaldementia #ftddementia #alzheimers #dementiaawareness #alzheimersawareness #caregiver #dementiacare #elderlycare #alzheimer
#blog #blogger #newblogpost #middlegrade #middlegradewriters #IndieAuthors #selfpublishing #amwriting #writersofinstagram #mommylife #daddylife #parentlife
April 14, 2021
Bonkers Book Review - Milkman by Anna Burns
My daughter Emily has come up with a novel idea.
Both of us love reading and writing and when I asked if she'd help me with a Book Review Blog she suggested making it a bit different from the usual reviews.
Bonkers Book Reviews is fun to write so hopefully it will be fun to read!
Special Offer!
Emily is studying for a Masters in English at UCL and writes brilliant short stories (judge for yourself!). If you would like to read one you can sign up here (and subscribe to my Blog at the same time 😊) The lovely people who have already signed up for my Blog will receive the story later this week.
Our first Bonkers Book Review is
Milkman by Anna Burns
If 'Milkman' was a...
Beverage – it would be Irish coffee. It’s set in Northern Ireland so you need something warm and comforting because it’s pretty bleak.
Car – definitely a Blue Lexus hybrid. It’s a hybrid of the past and present. The story is about the troubles in Ireland, but because no towns or cities are named the whole tale becomes universal. The characters throughout the book are impersonalised and have names such as ‘middle sister' or 'Somebody McSomebody’.
Holiday you would read it on – a week in a B&B in a UK coastal town.
Mood do you need to be in to read it – hardened and braced.
Your mood by the end – traumatized with easy-peeler sized remnants of optimism.
Title rating – 3/10. (depends on your relationship with milk. We think milk on its own is pretty disgusting and favour oat or soya).
Digestibility – Greasy fish and chips. You enjoy it while you’re reading it, but feel a bit sick by the end.
Page turnability – 8/10
PS Anna Burns shares my birthday!
I hope you enjoyed the review.
If you want to read a really good book click here to buy It's Raining in Moscow and I Forgot my Umbrella.
Did I mention it's been nominated for the 2021 Selfies Book Award?
5.0 out of 5 stars: DG
"Just couldn't put it down
I got so totally engrossed in this book that my poor dog nearly didn't get walked! I found it very difficult to put down. What a gripping story which is written in two parallel stories that merge into one at the end but leaves you wondering what happens next. Can't wait for the sequel to come out now."
carolineboxall.com
Both of us love reading and writing and when I asked if she'd help me with a Book Review Blog she suggested making it a bit different from the usual reviews.
Bonkers Book Reviews is fun to write so hopefully it will be fun to read!
Special Offer!
Emily is studying for a Masters in English at UCL and writes brilliant short stories (judge for yourself!). If you would like to read one you can sign up here (and subscribe to my Blog at the same time 😊) The lovely people who have already signed up for my Blog will receive the story later this week.
Our first Bonkers Book Review is
Milkman by Anna Burns
If 'Milkman' was a...
Beverage – it would be Irish coffee. It’s set in Northern Ireland so you need something warm and comforting because it’s pretty bleak.
Car – definitely a Blue Lexus hybrid. It’s a hybrid of the past and present. The story is about the troubles in Ireland, but because no towns or cities are named the whole tale becomes universal. The characters throughout the book are impersonalised and have names such as ‘middle sister' or 'Somebody McSomebody’.
Holiday you would read it on – a week in a B&B in a UK coastal town.
Mood do you need to be in to read it – hardened and braced.
Your mood by the end – traumatized with easy-peeler sized remnants of optimism.
Title rating – 3/10. (depends on your relationship with milk. We think milk on its own is pretty disgusting and favour oat or soya).
Digestibility – Greasy fish and chips. You enjoy it while you’re reading it, but feel a bit sick by the end.
Page turnability – 8/10
PS Anna Burns shares my birthday!
I hope you enjoyed the review.
If you want to read a really good book click here to buy It's Raining in Moscow and I Forgot my Umbrella.
Did I mention it's been nominated for the 2021 Selfies Book Award?
5.0 out of 5 stars: DG
"Just couldn't put it down
I got so totally engrossed in this book that my poor dog nearly didn't get walked! I found it very difficult to put down. What a gripping story which is written in two parallel stories that merge into one at the end but leaves you wondering what happens next. Can't wait for the sequel to come out now."
carolineboxall.com
April 8, 2021
Easter Epiphany
The curtain ripped from top to bottom.
Every Easter I relate the Easter story to my family. They say they're listening, but I think they're just being kind. Sometimes I make them recite it back to me, taking it in turns - it's a lot of fun for the whole family! 😊
If, once a year in April, you greet people with "Happy Easter", and if you eat large chocolate eggs, you should really know what it's all about. It's the same with Christmas - if you don't know why you're celebrating an event it's like gate-crashing a birthday party without even knowing whose birthday it is.
This year the story was told slightly differently - I made an 'Answer-Smash Easter Quiz'. I got the idea from Richard Osman's House of Games. I used to like Richard Osman, but I've gone off him massively because his book (which was published at the same time as mine and
and is also set in a care home) has become a best-seller and is going to be made into a film by Stephen Spielberg no less. Mine, meanwhile is somewhat floundering, still waiting for its big break. But Richard Osman is never going to be nominated for the 2021 Selfies Book Award and I'm sure he is envious about that.
My answer-smash had questions such as:
Q: The first two words of a fairy tale and the governor of Judaea at the time of Jesus' crucifixion?
A: Once upontius pilate.
Q: A written or spoken agreement and what the disciples found in Jesus' tomb?
A: Exchangels
It was the next question that prompted a big discussion:
Q: A visit made by students to study something away from their school and what happened to the curtain in the temple when Jesus died.
A: A geography field tripped from top to bottom.
I apologise here to academics and religious leaders who may not approve of my very simple explanation, but this is how I see it:
The curtain that ripped was hanging between the main part of the temple and the part reserved for the 'holiest of holies'. God wanted to open the place of worship to everyone - it didn't matter about your faith, colour, age, gender, wealth, profession or race. Jesus' death signified that God wanted to open up the temple to everyone.
1,988 years later, isn't this the understanding we're still striving for? If only people would stop trying to sew up that curtain.
You can buy my book It’s Raining in Moscow and I Forgot my Umbrella on Amazon. Do buy it, especially if you are Stephen Spielberg.
If you would like to receive my blog regularly visit carolineboxall.com
Every Easter I relate the Easter story to my family. They say they're listening, but I think they're just being kind. Sometimes I make them recite it back to me, taking it in turns - it's a lot of fun for the whole family! 😊
If, once a year in April, you greet people with "Happy Easter", and if you eat large chocolate eggs, you should really know what it's all about. It's the same with Christmas - if you don't know why you're celebrating an event it's like gate-crashing a birthday party without even knowing whose birthday it is.
This year the story was told slightly differently - I made an 'Answer-Smash Easter Quiz'. I got the idea from Richard Osman's House of Games. I used to like Richard Osman, but I've gone off him massively because his book (which was published at the same time as mine and
and is also set in a care home) has become a best-seller and is going to be made into a film by Stephen Spielberg no less. Mine, meanwhile is somewhat floundering, still waiting for its big break. But Richard Osman is never going to be nominated for the 2021 Selfies Book Award and I'm sure he is envious about that.
My answer-smash had questions such as:
Q: The first two words of a fairy tale and the governor of Judaea at the time of Jesus' crucifixion?
A: Once upontius pilate.
Q: A written or spoken agreement and what the disciples found in Jesus' tomb?
A: Exchangels
It was the next question that prompted a big discussion:
Q: A visit made by students to study something away from their school and what happened to the curtain in the temple when Jesus died.
A: A geography field tripped from top to bottom.
I apologise here to academics and religious leaders who may not approve of my very simple explanation, but this is how I see it:
The curtain that ripped was hanging between the main part of the temple and the part reserved for the 'holiest of holies'. God wanted to open the place of worship to everyone - it didn't matter about your faith, colour, age, gender, wealth, profession or race. Jesus' death signified that God wanted to open up the temple to everyone.
1,988 years later, isn't this the understanding we're still striving for? If only people would stop trying to sew up that curtain.
You can buy my book It’s Raining in Moscow and I Forgot my Umbrella on Amazon. Do buy it, especially if you are Stephen Spielberg.
If you would like to receive my blog regularly visit carolineboxall.com
