The moments you noticed they had changed: share your experience

jay6

Registered User
Jun 25, 2023
952
0
For me is was the loss of interest in everything, his lack of empathy for others and his attitude towards me. We'd always argued about how selfish he was but gradually he became more and more of me, me, me, became/still is very verbally abusive. Had a period of violent behaviour which thankfully has now stopped. Everything was and still is now my fault. I started having problems trying to reason with him, now it's impossible. He began accusing me of untrue things, like steeling money. Was and is still fine with others but totally different when we are alone.
 

PolarB

Registered User
Jul 22, 2023
24
0
My sister has Alzheimer's and in retrospect there were a number of signs over the years, but the one that really sticks in my mind is when my sister and I were at home as our mum was dying. After she passed away my sister came over to the side of the bed I was sitting by, and asked me (whispering) "is she dead yet?" At the time I put it down to shock, but no it was early stages of Alzheimer's
 

HarrietD

Staff Member
Staff member
Apr 29, 2014
9,579
0
London
Thanks again everyone for sharing when you noticed things changing - I know it's not always an easy thing to revisit, and it really is appreciated.

If you haven't already, please free free to share your experiences of this.
 

Louise7

Volunteer Host
Mar 25, 2016
4,577
0
Mum doted on her cat and the first signs that something wasn't quite right was when Mum started to buy lots of sachets of cat food, sometimes going several times a day to the local shop to get more, despite already having plenty of cat food in the cupboard. She also became almost obsessive about cleaning out the litter tray, doing this numerous times throughout the day even when it didn't need cleaning.
 

Rachael03

Registered User
Apr 17, 2023
96
0
Like many others there were lots of small warning signs mounting over months but I remember vividly when the penny dropped for me.

I'd been up to stay with Mammy for a long weekend, as was very normal, as I lived around 200 miles away at the time. In the middle of the following working week I awoke to a voicemail message where she was asking when I'd be returning home. She was worried about me being out so late. The following evening she called again to ask when I'd be back, as she thought I'd been in her house that morning.

It was like someone ripping off the blinkers I'd been so desperately trying to keep on. It prompted me to pursue a private memory clinic appointment and 4 months later, she was formally diagnosed with vascular dementia.
 

Chizz

Registered User
Jan 10, 2023
3,148
0
Kent
Yes, as others have already said, we've been through those early stages of losing interest in things my OH used to do, writing notes of the day/ date/ etc to remind herself of everything, but that passed, then losing co-ordination so can no longer write, can no longer use cutlery, developing a fear of falling, speaking randomly and not always actual words, calling for people not here, seeing people in the garden, etc and then after a stay in hospital forgetting how to walk. That was and is a BIG one, to put it mildly.

But the little things can be big, as well. We've been together for more than 56 years, but can now no longer have a proper conversation. Yes she can tell me if her tea is too hot, or things like that. But it comes to this:

1) One day my OH looked at me and said "Aren't you someone I used to like?"
I accepted that recognition. It could have been worse - such as someone she didn't like!

2) She can no longer follow most of what's on television - images change to quickly to process, speech too fast, etc etc, but sometimes she'll heckle the TV or want to speak to someone on TV and keeps saying "Excuse me.., excuse me..". as if waiting to join in

Once when watching sport on TV, she turned to me and said "I want to be in your team!" I liked that.
 

Veritas

Registered User
Jun 15, 2020
311
0
It was very subtle changes initially - a certain emotional distance/disengagement from me, declining social skills, over-tipping, loss of initiative/mo-jo. Then we had a few odd lapses of memory, but the crunch came when I realised that he had lost a key skill. He seemed oblivious, but I knew then what we were in for. It was several years after that before he was finally persuaded to go for assessment, and by then there was plenty of evidence of other losses to report. Formal cognitive assessment showed up the gaps and the diagnosis was made.

Our experience demonstrates the problem with the assumption that dementia is just about losing one's memory. If there was one message I'd want to get across to the general public, it's to be suspicious about unexplained personality/behaviour change, especially as the effectiveness of the emerging treatments seems to be strongly dependent on early diagnosis.
 

sue2108

Registered User
May 9, 2023
31
0
For me it was very gradual over some years …What’s this Brexit ? Who is Trump ?
Realising on our last trip in 2022 to visit my daughter in Australia that he couldn’t function unless I was there, repeating questions over and over, not knowing the grandchildren’s names . Taking his trousers off in Abu Dhabi airport when told to take his belt off….following me into the ladies loo….
Probably the most upsetting thing was when he was being “assessed “ by a social worker - “ and how did you meet your wife”
“ oh I can’t remember” he says.
(She signed him off by the way as she said he had a bit of a memory problem but was fine otherwise).
What I’ve learned from this lovely forum is that every case is different.
 

Toopie28

Registered User
Jun 7, 2022
262
0
For me, Dec 2020. Ma was 89. Healthy. No meds. Walked every day. Worked every day. Cooked for herself.

I live overseas and came back at least twice a year as Ma got older.
During COVID I was stuck overseas and couldn't visit. Everything closed down and her routine (worked/volunteered at her church every morning) stopped.
I remember her phone calls - "my head isn't right" she would say. "There's something wrong with my head, I'm forgetting". I thought it was age. Ignorant, ignorant me. Never did I think dementia. Never.

I got to come back Dec 2020 and that night she kept asking me the time and the day.
I boiled it down to it being late. Then the next day same thing and I realised it was the beginning.
From there, her dependance and wanting to talk to me all the time was not normal. Phone calls in the middle of the night (when I went back overseas)

The biggest change was last March (2022). Paranoia. Hallucinations. People stealing.
Speedy downhill from there I would say.
I installed Alexa portal - she started thinking I was there. I remember telling her it was technology and I'm not there and in one of her last moments of clarity she said - "I would be devastated and never sleep again if I thought you weren't here". And the facade of me being in the box/upstairs continues to this day.
 

MarieD

Registered User
Dec 26, 2021
106
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 😢
 
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Anthoula

Registered User
Apr 22, 2022
2,099
0
I can not honestly say there was one incident which made me think things were not quite right with my partner. Approximately 2 years before his eventual diagnosis of vascular dementia, and when he was still working at age 74, I gradually became aware of his forgetfulness which I put down to old age and him working a full day 5 days a week. Often, first thing in a morning he would ask what day it was and the time, and when I told him he would simply reply that he wasn`t fully awake yet. Then he started to forget appointments, family birthdays etc. etc. That`s when we began to add these to the kitchen calendar. It was only after another 12 months had passed I noted that when he was driving he would forget roads and turnings even though he had been familiar with the area for 30 years. He would occasionally ask me which way he had to go, and when I looked at him quizzically he would say that he had not driven that way in a long time and could not be expected to remember every street and corner. It was only then that the penny dropped for me, and somehow I persuaded OH to see a doctor. He then underwent the basic memory test and was referred to the memory clinic. Another 6 months or more down the line, following a few visits to the clinic, OH suffered a heart valve problem and had to finish work and undergo open heart surgery. At this point in time the memory clinic would not continue seeing him as the surgery and recovery period would impact on their tests. So it was yet another 6 months or so before OH was able to return to the clinic. By this time it was obvious to them and everyone who knew him that he was suffering from some form of dementia.
 

cobden 28

Registered User
Dec 15, 2017
193
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.
 

Putties

New member
Oct 12, 2022
4
0
In 2017 my wife was diagnosed with Alzheimer's and anxiety which was a bit of a blow. Then it was changed to mild cognitive and anxiety. Her memory has got worse especially short term memory but long term is showing difficult. There has not been any medical follow up until I contacted my GP two weeks ago where I was told someone would contact me as only urgent cases are dealt with. It may not be urgent for them but I ask what about the sufferer and others who have to deal with this medical issue.
Until the medical profession acknowledges that this illness cannot be seen it is still there.
 

Ali1234

Registered User
Oct 19, 2023
44
0
Forgetting how to use a mobile phone and having to get someone else in the street to help.
Unable to learn to use a new hoover.
Asking about the strange writing on the towel which on further investigation was the washing instructions.
Slow steady decline in ability to understand tv programmes.
Forgetting birthdays after always remembering everybody's birthdays
 

Pete and Rose

New member
Jul 16, 2023
3
0
I suppose the first thing that sticks with is the time when my wife had made our evening meal and when she presented it to me - there were no potatoes - we pretty much always had potatoes with our main meal…

I asked her about the lack of potatoes and she replied that she thought we’d have a change…

It wasn’t long after that she was experiencing difficulties at her work place - she was a library manager, which compounded by a bullying area manager…

Eventually, following tests, my wife was diagnosed with Alzheimer’s and I guess - typical man - I didn’t believe it, but that was 13 years ago and much has changed…

We now live with Alzheimer’s and have discovered many different ways of doing things - it’s a new journey, we still have fun, and each day is different, sometimes challenging, sometimes not so…

She’s still my wife - I’m still her husband and I know if roles were reversed, she’d be looking after me…