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Young Sisters Face Tough Decision After Their Mother Develops Early Onset Alzheimer's At Age 45

Zoe, Joanne and Katie (PA REAL LIFE/COLLECT)

A 25-year-old woman with a 50 percent chance of developing early onset Alzheimer's has spoken frankly of her daily agony as she struggles to decide whether or not to be tested for the degenerative brain disease.


Not only are sisters Zoe Higginson and Katie Lambert, 17, forced to watch their beloved mom Joanna Lambert's heartbreaking deterioration, after she was diagnosed four years ago at 45 – one of only five percent of Alzheimer's cases to develop before 65 – but they know they could have inherited the cruel disorder, too.

Now, the brave women, of Wickford, Essex, have vowed to wait until Katie turns 18 in January – when she is old enough to choose for herself – before deciding whether or not to have the test.

Zoe with mom Joanne (PA REAL LIFE/COLLECT)

Admin assistant and hairdresser Zoe, who is single and moved back home three and half years ago to help with her mom's round-the-clock care, said: “At the moment, I'm just like anyone else walking down the street, not knowing if I'm going to get it.

“But if we take the test and it comes back with a positive result for a particular gene, then that means we will definitely get early-onset Alzheimer's.

“If I knew I had it, I would live my life differently. I probably wouldn't have children, because I wouldn't want them to go through it."

Zoe and Katie with mom Joanne (PA REAL LIFE/COLLECT)

Zoe explained: “If I met someone, I'd have to explain the situation to him. It's a lot for someone to take on, so I would want him to know what might happen and give him a choice of whether to stay.

“Not a day passes when I don't think about it. But I must be 100 percent sure I can cope with the outcome – as does Katie – as once you know, that answer that will never go away from you."

According to the charity Alzheimer's Research UK (ARUK), several genes have been found that play a role in the development of the rare familial form of the condition that the sisters face developing.

And if someone has a strong family history of the disease at a young age, the NHS offers genetic testing – first insisting they have six months of counseling, to prepare them for what could be a shattering result.

“I've always said I would wait for Katie to turn 18 before I make a decision on whether to find out if I will get it," Zoe said. “If it was the other way around and she got tested without me, I don't know how I would cope with that.

“If she says she doesn't want to know, that's okay, and I will make my decision then."

Looking back, Zoe realizes she first noticed her mom – who she helps her taxi driver stepfather, William Lambert, 49, to care for – had become forgetful about a year before she was diagnosed.

She said: “Mum was always a very bubbly, outgoing person. She would do anything for anyone and stop to chat to anyone. Everyone in the town knows her.

“But when she was 44 there were certain signs that kept cropping up, things like repeating questions. She'd ask something, then five minutes later we'd have the same conversation. It was happening more and more often."

Zoe and Katie (PA REAL LIFE/COLLECT)

She continued: “My mum is my best friend. We spoke every day – even though I wasn't living with her then. She knew everything about me, so I knew things weren't right. I did try and talk to her, but she would say 'No no, there's nothing wrong with me.'"

Concerned, Zoe confided in William, who she calls 'Dad' and has been her mom's partner for 20 years and husband for 10, and the pair agreed to get Joanne to her GP who, in the summer of 2015, conducted the usual recall test given to people with suspected dementia, which involved asking her basic maths and memory questions.

Realizing she was struggling, the GP quickly referred her to neurologist Professor Nick Fox at the National Hospital for Neurology and Neurosurgery in central London, where in August 2015, she was officially diagnosed with early-onset Alzheimer's.

Joanne and William with Zoe and Katie (PA REAL LIFE/COLLECT)

She was prescribed donepezil and memantine which, although unable to cure it, helps to restore the balance of natural substances in the brain to improve memory, awareness and the ability to function.

More typically thought of as a condition affecting people over 65, according to ARUK, Zoe recalls being devastated.

“That was hell, because we knew it was a disease that there is no coming back from," she said. “You know there is going to be a deterioration and no cure, so there is no hope."

Zoe explained: “Following the diagnosis, Mum deteriorated quite quickly to the point where now, she cannot do anything for herself.

“She can't follow a conversation, or tell you what she is thinking or feeling. She has become incapable of doing simple things, like making a cup of tea.

“We're best friends, so to watch her personality fade has been really hard."

Joanne and William (PA REAL LIFE/COLLECT)

“From my dad's point of view, they should have been able to go away and do things together, but that has been stolen from them. In my eyes, he is amazing the way he's stuck by her."

Now Zoe treasures the odd moments when she still sees glimmers of her mom's familiar personality.

She said: “She is still able to laugh and if she's in a good mood, we can put the radio on and have a dance about."

She continued: “It's not how we would normally have a laugh, but we have to take it for what it is."

Eventually, Zoe, who wants to spend every precious moment possible with the mom she adores, will give up work to help care for her full-time.

At the moment, to make sure she is never alone, Zoe, Katie, William and her grandma, Margaret Kirsch, who is in her early seventies, who is Joanna's mom, but does not have the disease, share responsibility for her.

Most days, Joanna will recognize her family, but can become irritable, which is difficult to cope with.

“She knows who we are, but sometimes she can't say our names," Zoe said.

“Some days, she takes against someone. She will look me up and down, give me the filthiest look and tell me to, 'F*** off,' but I know it's not my mum, it's the disease."

Joanne and William (PA REAL LIFE/COLLECT)

Zoe said: “She gave me a cuddle the other day when I came back from holiday, but before that I couldn't remember the last time she'd kissed and cuddled me, or told me that she loved me.

“For someone who I was always really close to, it's really hard to accept.

“She absolutely adores my dad, though, which is lovely to see. She will follow him around and he can't do a thing wrong. The biggest smile comes on her face when he comes in from work."

Joanne and William (PA REAL LIFE/COLLECT)

She explained: “She needs around-the-clock care, because she won't sleep unless my dad is there."

Zoe and her family also have to face the fact that Joanna is unlikely to live a long life – although they have not been given a definite prognosis.

Meanwhile, every six months they visit her consultant, Professor Fox, who has been a huge support, to monitor her deterioration.

Zoe explained: “Professor Fox is determined to find a cure for this disease and he makes me feel optimistic.

“There needs to be much more awareness of this type of Alzheimer's, as we always associate it with older people, but it's affecting young people as well.

“I want people to realize it does happen and it's good that people talk about it, as it is not something to be ashamed of."

Meanwhile, every year, Zoe has anonymous testing for early onset Alzheimer's to help with their research," Zoe explained.

Unsure how far back their family history of early onset Alzheimer's extends, Zoe and Katie can't be sure when it developed.

Determined to help increase awareness of the condition and boost funds towards research for a cure, Zoe took part in a sponsored skydive last year, raising more than £1,500 (~$1800) and is also currently organizing a charity ball, in aid of ARUK which will take place in October in Billericay, Essex.

Zoe continued: “I want to know I've done all I can," she said. “If I discover I have the disease and can get a place on any clinical trials to help doctors know whether medication is working, I will be happy to be a dummy and help in any way I can."

For now, Zoe will continue to ride out the highs and lows, making as many memories as possible with her mom.

“We are still able to go out shopping, dog walking and do things together but she gets restless," Zoe explained. “It's important for me to put that smile on and be strong for her and for my family. It's tough, but you have to carry on."

A spokesperson for Alzheimer's Research UK said: “One in twenty of all cases of Alzheimer's disease are defined as early-onset, where the symptoms begin at the age of 65 or younger.

“Only a very small number of these are familial. Fewer than one percent of all cases of Alzheimer's disease are familial.

“With early-onset familial Alzheimer's there is a 50 percent chance of having the gene, and if someone does have the gene then they sadly will definitely get early-onset Alzheimer's disease unless they die earlier of something else."

For information, visit www.alzheimersresearchuk.org

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When you know your kids backwards and forwards, this is the best tool in your arsenal.

Getting our kids to listen to us is not always the easiest of tasks. They're willful and stubborn, but we've got a mighty weapon they are rarely prepared for: reverse psychology. Getting them to convince themselves to want to do something against their own initial intentions takes some work and a whole lot of creativity, but a little sneaky manipulation goes a long way. Here are some clever parents' tricks that are definitely worth taking notes on.

Redditor u/LeanderD Asks:

Parents of reddit, what's your best example of reversed psychology on your kids that actually worked?

He Floated His Idea Through A Back Channel

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Wanted to name my boat. Anything I would think of was dismissed as stupid by my 13 year old son. After deciding on a name, I confided to a male friend my son liked. Made my friend suggest the name as though it was his idea. My son thought the name was perfect. Done.

calypsodweller

We Always Want What We Can't Have

One of my best friends through childhood used to be punished with no salad if she misbehaved. She cherishes salad now and would always try to eat as much as possible during school lunch. Coincidentally, her now husband used to be punished with no books, it had the same effect. I think it's hilarious that they'd be hitting the salad bar and library like some black market their narc parents couldn't reach hahaha.

cookiearthquake

A Deceit That's A Cut Above The Rest

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Don't know if this counts, but, at my high school (private, boys only) in the 1960's, they made a big deal about how long your hair was, and would occasionally order a boy to go home and "get a haircut".

I thought it was stupid, until years later, a master confided to me at a reunion that the policy was deliberate. The school figured we'd spend so much energy rebelling about hair length, that we would ignore other aspects of teenage rebellion. (Not?) Surprisingly, they were mostly right.

FrankDrakman

Damn! That's smart. Wow.

fangxx456

Oh they don't like long hair?

I'll show them. I'll grow my hair out as lon- what?! No I don't want to go "party"? I gotta try out this horse shampoo.

DankeyKang11

The Forbidden Book

Hi I was a victim,

There was a forbidden book that I was not allow to read on the shelf. My parents said I could only read it if I behave myself.

It was summer holidays and I was playing games all day (after 6 hrs of summer homework). One day I was home alone and had the opportunity to grabbed it. I read like half of it in one go. It was 5000 years of Chinese history.

Safe to say I was bamboozled.

oddstodd

Flowers Of The Queen

My parents always told me my broccoli were the flowers of the queen and that I really shouldn't eat them, or else the queen would get very upset! I, of course, ate the whole broccoli in a few seconds.

Subwoofy

I'm telling the queen and she's gonna be pissed

draculacletus

Sleeping Beauty

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I taught my kids when they were toddlers that no amount of yelling, shaking or hitting can wake a sleeping adult. The only thing that works is a gentle hug and/or a nice kiss on the cheek.

Edit: Probably needed some more details for the reverse psychology aspect to be clear. It went something like this - Step one, tell the kids I'm going to sleep and nothing they do will wake me (head buried face down is the safest position). Step two, after the initial onslaught dies down pretend to awaken on your own. Tell them you got a bit of nap left in you and nothing can wake you, especially not hugs and kisses.

DrMethusael

Holy sh*t...if my daughter woke me up like this I would buy her a pony.

All-Seeing_Elon

I am saving this comment because this will save lives if I ever have kids, stg.

smerter

A Walk In Someone Else's Shoes.

Split custody with my ex. When my son was around 10, he visited two weekends a month. I was waiting tables and didn't have a huge amount to spend, but he was so needy from divorce (and I'm not blaming him, it was ugly), he begged constantly for MORE when he was with me. Whatever more was, it didn't matter... he'd be eating ice cream cone and begging for teriyaki.

I finally realized that he just felt empty, and getting MORE whatever from me wasn't filling him up. His next visit I handed him $100 in cash and told him it was our food/fun budget for 3 days and two nights, and he was in charge of it. I bought him his own wallet to carry. We figured out how many times we were going to eat and what we were going to do, and he paid. He got to keep whatever money he had left...thought he was rich...then realized just how much everything cost. Well. Shoe on other foot then. If we had no money for food, we ate leftovers - and I didn't contribute more to pot. After a few weekends of running short or not getting something he actually wanted because he was foolish with funds, he started to really think about how to spend that money. He budgeted and kept to his budget. And a few times he actually went home with a little cash for his private stash.

Many years later, he thanked me for this. It really changed the way he thought about money and love.

Augumenti

This Is Worth Giving A Shot

Took my 3 year old son to one of those doctor's visits where he was going to get a shot. He was worried about the shot on the whole drive over, almost to the point of tears. We get to the doctor's office and a nurse subtly lets me know that my son is not just scheduled for 1 shot, but 5 of them in the same visit.

I turn to my son with an exaggerated smile and tell him, "Good news! They figured out how to take that one big shot you were going to get and instead break it up into these 5 little tiny shots so it won't hurt nearly as much!"

You could see the relief wash over his face. He stopped squirming and relaxed completely. He took the first shot and even smiled and said "It's true! The small ones don't hurt!"

We actually made it through the third shot before the effect wore off and reality kicked in. Still... I counted it as a victory.

blackbird77

Put This To The Taste

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My mom would tell me she only lets me eat soup after candy and she'd only buy me candy that i didn't like. After a few times, i stopped trying and begged her to let me eat soup first. She gave me a smirk and told me go ahead. This doesn't sound as evil as it was. But trust me i suffered.

turkeypr0

So what was the candy?

Poster_Main

Mint chocolate, raisins, stuff like that. I still hate them to this day. Who the f--- thought while eating chocolate "hmm id like some tooth paste with this."

turkeypr0

This is Truckin' Awesome

Mum had sworn a bit around the house.

When 4, while out at the supermarket, I said F word really loudly.

Very quickly and intently, she asked if I had just said "Truck" and said that was a bad word and not to ever say Truck like that again.

I thought that was the bad word so used that when being naughty.

GodOfTheThunder

The "Silly Mom" Routine

The "Silly Mom" routine.

My kid, and a few other kids I've known, would balk at getting ready to go. I'd grab their clothes and say, "Well, if you won't put on your clothes, I guess I'll put on your clothes. Cute shirt, by the way! Does it go on my foot?"

NO!

"Does it go on my head?"

NO! IT GOES ON ME!

"Oh, that's right, thanks! So, it must go on your legs, right?"

NO!

"I just can't figure this out! Where does this adorable shirt go?"

[kid grabs shirt and puts it on] ON MY TUMMY! SILLY MOM!

"Oh, thank you so much! Now what about these pants? Shirts go on tummies, so...the pants go on the tummy, too, right?"

NO!

[continue until kids have dressed themselves]

I would also do things like hand the kid my keys and say, "Alright, you're driving, I'll sit in the booster seat in back," attempt to feed the kid by putting a spoon up to his ear or his belly button, and attempt to put away his toys in the refrigerator.

insertcaffeine

Some Foot For Thought.

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My mum would always yell at us "if you don't do X, you have to go to bed without socks!"

I never wore socks anyway, and I'm ashamed to admit that this worked.

Splittsky

That would work really well on my son, or make him cry for a really long time... He's 3 and over the last few weeks has decided that he is fully unable to sleep without socks on.

PJQueen

Toddlers man. Completely unpredictable.

SheaRVA

I'm Greens With Envy

My mum had a friend that would put vegetables on her own plate and not the kids.

When the kids asked she would be reluctant to share, "that's grown up food. But I suppose I can let you have a little."

Her kids grew up loving vegetables.

I sat at the dinner table for 3 hours staring at the yucky cauliflower I refused to eat.

laik72

This reminds me of an instance when my child convinced my wife and myself to change our plans for dinner. We were in a grocery store to pick up something quick and easy to eat that we wouldn't have to prepare. Our daughter, wanted none of that, she demanded that she wanted a salad from the salad bar. We started to argue back, but then realized: "Our child demands that we feed her vegetables for dinner instead of a microwaved meal, why are we saying 'No?'"

We had salad for dinner that night.

Galaxy_Ranger_Bob

The Power Of Choice

I don't so much know if you would call it reverse psychology, but I didn't realize it until my dad told me this.

When there were chores that needed doing, he noticed if he asked me to mow the lawn, I would complain and procrastinate. But if he asked would I rather mow the lawn or wash the windows, I'd pick one and just get it done.

Shattered my brain when he told me when I was in my twenties. I use it when I'm coaching or baby sitting all the time and it almost never fails.

AppealToReason16

The Boy Who Cried 'Ouch'

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I've done this one with tens of kids. Any time a kid gets "hurt" (falls down on grass, gets gently hit in the face with a ball, etc.) instead of stopping the activity to pick the kid up and see if they're ok you just scoot them off to the side and resume. Within 10 seconds of not getting all the attention and seeing the fun is resuming they pop right back up and are magically healed.

This of course is only for the "injuries" that aren't actually injuries.

pedanticProgramer

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