The moments you noticed they had changed: share your experience

Simon Penn

Registered User
Jul 22, 2023
12
0
Hi everyone,

We have a request from our Marketing team below :)

We’re privileged that so many of you share your experiences of dementia with us and each other on this forum - from the realities of just how challenging it is, to cherished memories with your loved ones.

We also understand how important it is that how Alzheimer's Society portrays dementia in our advertising is authentic and relatable. Wherever possible, we base our advertising on real stories.

With this in mind, we would love to capture some of your personal experiences to inspire our portrayal of dementia in future advertising, particularly if you have a loved one who is living with, or has passed away from, dementia. As difficult as it can be, we believe it is important to show the true reality of dementia, so dementia as a cause gets the attention it deserves.

Please share in the comments below the moments you realised your loved one with dementia was not acting like themselves. This could be things like not recognising important people in their life, a change in personality, or no longer being able to do things they used to love. Big or small, we are really interested to hear what poignant moments stick in your mind.

Your comments may be used to help inspire future advertising campaigns, and the team may reach out to you for further information. Thanks everyone.
 

Simon Penn

Registered User
Jul 22, 2023
12
0
My wife was diagnosed with Stage One AD in June this year, but she'd herself noticed a memory problem as long ago as 2015. That moment was when I mentioned a well-known public building in our London Borough. She suddenly said 'what's Perceval House?' We explained, but she couldn't visualise it. Later, the full memory of the building reappeared as normal. But for her, forgetting this well known landmark was disturbing. She went through the usual run of cognitive tests - she scored 100% - and an MRI scan - 'you have the brain of a teenager' she was told. Many other tests and a lot of heartache later - not to mention eight years during which I thought it was I who thought I was going mad as 'normal' information processing seemed to be disappearing with my wife, she was finally found, thanks to an amyloid PET scan, to have Alzheimer's Disease. Now, though, the memory and information processing are very noticeable, though my wife's indomitable and energetic spirit are undimmed. But the pain of the long diagnosis has been quite damaging. We need to have more sensitive tests applied much earlier, in my view.
 

Lulu51

Registered User
Oct 30, 2022
28
0
Dad had died of glioblastoma brain tumour in the pandemic me & mom by his side passed at the family home as daughter I had to arrange funeral everything with the restrictions in place mom just seemed to freeze up , I went to bank helped her with finances etc & thought her symptoms just grief and aged 74 then year later she passed out infront of me eyes wide open I thought mom had brain tumour but the MRI confirmed the damage then after 6 months from it with her getting worse finally saw Memory clinic that said she had Alzheimers and Vascular dementia dad dying and the pandemic dudn't help but looking back we think she had began suffering 5 years prior whilst caring for Dad, it turns out dad did everything finance wise and running of bungalow. So past 3 years has taken its toll on me losing Dad & doing best for mom had to fight with her GP who even with a diagnosis was totally unhelpful I sort help from a different GP who was lovely but sadly left the practice - Im doing my best family care givers of loved ones need to be heard and help from NHS and finacially #CHC #Fixthefunding.
 

Lulu51

Registered User
Oct 30, 2022
28
0
Father in law died of terminal cabcer 1 month before my own father to termunal cabcer both in pandemic mother in law 86 elderly and frail again we thought age and grief at losing her husband her memory started to fail started to get muddled she passed August this year she was not even started on any memory meds they did assessment in her home as to ill to travel that was January MRI confimed dementia the week if her dwath she had a bad fall when 1 of the carwrs had taken her to the toilet we knew she was poorly we got her to bed its where she remained the nurses came in give her morphine keep her pain free we said our good byes helped her pass in her own bed she joined her hubbie in the Thursday of that week grand daughter & eldest daughter were with her when she took her last breath she was very loved. My hubbie was heart broken as I say the past 3 years has been terribly hard on myself and him. Care givers need help and support NOW not Oct 2025 #CHC #Fixthefunding.
 

R&R

New member
Nov 14, 2023
1
0
Lincoln
She started to get angry and nothing pleased her
Friends were surprised at her change and not prepared to tolerate it
 

DaughterNo3

New member
May 10, 2023
2
0
My mum got covid October 2020,from then on everything changed,she stopped most of her personal hygiene,her mobility was getting poorer and poorer,concept of time practically went,became obsessed with 1 channel on the tv,and her tv magazine,which 9 times out of 10 was on the wrong day,she would still socialise,names and faces became mixed up.Eventually we got tests started,as she wasn’t on any medication the medical team where quite un willing to start her on any,Her empathy was now beginning to diminish,even the death of the queen and a month later her sister did not affect her at all,which to us was very heartbreaking,then it was phone calls at all times,then finding her on the floor a couple of times,eventually being admitted to hospital on March19th Mother’s Day after yet another fall,she spent her first week on a medical ward then 3 weeks in a dementia ward,this was absolutely horrific,she stole,argued and physical violence to other patients.Got her into a nursing home where she just faded away in front of our very eyes,she was put on medication by this point that really didn’t agree with her,10 weeks she lasted June 29th she passed away.Her death certificate states,Exhaustion,Vascular dementia,that’s when we found out her diagnosis.As a family we knew it was something under the alzheimers umbrella.
 

Tiredmum

New member
Oct 31, 2023
1
0
Hi Now when I look back I realise the signs were there but my mum had a way of hiding them.
I would say they started years before we finally realised she had dementia.
My mum would never forget birthdays yet she forgot my sons 18th but she came up with a plausible reason. A few months later she forgot my daughters birthday we then decided that I’d buy the birthday cards for her to write so she wouldn’t forget again we just thought it was old age.
She stopped baking she loved baking her excuse was her hands hurt ( her hands were fine )
She always loved to decorate the house for Christmas she stopped doing it we thought she was depressed as my dad had died a few years earlier so put it down to being lonely.
I took her out for lunch were I bumped into a friend my mum was really rude and started saying inappropriate things. It wasn’t long after this that we really noticed a decline so I got my mum to do the clock test and this was the reason we took her to the GP to get assessed and they agreed she had dementia.
I should also add she had a note pad she’d take it everywhere she was always writing in it she wouldn’t show any of us what was in there. After she went into care we looked at the note pad hardly anything made sense there were random words on pages ( misspelled ) and jumbled up sentences numbers everywhere etc it was very scary to read.
There was a very rapid decline after this and she passed away from dementia two and a half years later 😢
This sounds exactly like my mum. My mum forgot my birthday and my husband rang her the day before to remind her, she told him she’d forgotten. She did get me a card and we spent my birthday at home with a birthday tea. She asked who had put coleslaw on her sausage bap I replied she had but she couldn’t remember that.

She also has a writing pad, always writing notes of where and when she’s got to be places but instead of writing everything fully for example Dentist on 1st Dec at 11.00am she would write Tuesday at 11am so when it comes to read it later she doesn’t understand what she’s wrote as there’s no meaning behind it.

I now organise and accompany her to appointments however I know soon that I’ll be doing more and more for her as she is unfortunately progressing quite rapidly yet refuses to go to the GP.
 

only child Helen

New member
Mar 29, 2023
2
0
Mum is still skilled at hiding the fact that she doesn't understand what is happening around her. It started with not being able to understand finances, no longer interested in reading (the family home has more books than a library), there was what I thought was normal old age memory loss, but then all hygiene practices disappeared, in the home and personally and the repetitive questions started, along with repetitve phonecalls.
Mum had always asked me with every boyfriend if we were going to hear wedding bells, when I finally got engaged she seemed not to care or want to have anything to do with any wedding arrangements. She was the only one who saw my wedding dress before I got married and I kept the dress at her house but she was adamant I hadn't shown it to her. She was often confused that I would be busy that day and wouldn't be able to take her shopping.
She thought people were stealing food from her fridge and that I had stolen her car, she even called the police on me, luckily they seemed quite understanding about the situation and didn't persue it further than a phonecall . She became obsessed with shopping (and still is) but she has almost stopped eating anything but biscuits and cakes. I was constantly emptying her fridge of rotten and out of date food. We have the same argument everytime we go shopping, she wants to buy potatoes or tomatoes and yet she won't eat them.
My mother hasn't bathed or showered since March, she won't allow anyone to help her with personal care - " she doesn't need to shower as she doesn't get dirty". She is desperately lonely and feels she never sees anyone to talk to, according to her she doesn't go anywhere or see anyone from day to day. In reality she has 4 carer visits a day, one district nurse visit a day, she goes to a day centre twice a week and we attend at least 2 memory coffee mornings a week, on other days we go shopping.
She now forgets how to do simple things like draw the curtains or turn the tv on.
She is nothing like the houseproud, clean and smartly dressed, intelligent and organised woman I remember. She is now dirty, wears dirty clothes, (I have to sneak them into the wash as "they don't get dirty" either). She seems to have no empathy or memory and we live not only "groundhog day" but sometimes ground hog 5 minutes. I feel my mother is gone but I can't mourn her as someone is still walking around in her body.
 

Badger#

New member
Nov 17, 2023
3
0
Hi with my mum back into 2005 it was her change in character and inappropriate behaviour. Mum was the most placid gentle person but she began to swear in front of my young children. We were brought up Catholic and never heard her swear...She was also convinced my dad was having an affair with a 90year old neighbour...and would bring this up at family meal times again swearing .She would ask me if she had wet herself and pull down her knickers and Id have to usher her into the toilet before my children saw her. I visited most weekends so there was probably more that my dad would not discuss.
 

Jacqui 79

New member
Nov 17, 2023
1
0
My husband suddenly started having delusions, didn't know where he was and didn't recognise me. I thought he had a urine infection but as it was Friday evening when this started I couldn't do anything until Monday when I persuaded him to give me a sample which I then took to our surgery. It was clear but our doctor saw us and arranged for a CT scan and an appointment with a consultant. Eventually the medication worked and apart from odd outbursts it is his short term memory which is deteriorating. Looking back there probably were signs but if so I didn't recognise them.
 

jennifer1967

Registered User
Mar 15, 2020
22,627
0
Southampton
i first noticed changes when he couldnt walk straight, very unsteady, then he was really snappy, couldnt walk around the supermarket and he couldnt remember appts and kept asking me about them and who they were with and why. just before he was diagnosed in march 2020, we were in victoria coach station on our way home from my sons wedding. it was crowded being christmas, he was overwhelmed and was sobbing in the middle of the station and didnt know what to do. even when away, he couldnt dress or change in his wedding stuff. didnt really know what was happening. thats when i realised it was serious.