What were the early signs?

[Mumof3confused]

I think my mum has some early signs of dementia. Unfortunately she’s a very difficult person and is raging after it was suggested she should see a GP. She’s apparently looked up a list of signs online and says she has none of the symptoms. Perhaps she’s just ageing but I’m not the only one who thinks her behaviour is odd. I’m freaking out as my dad is not in a state to care for her - he also needs her to help him! I’m an only child living abroad so really starting to get a bit stressed out about their declining health.

What were the first early signs that you noticed in your relative before they got their diagnosis?

@Fgfgfg I have both, finance and health & welfare.

@NoBinturongsHereMate thank you for your response re ringing the GP, I will do that, I just want to flag it as I'm worried.

With my Aunt the first signs were to do with money. She was suddenly unable to work out how much cash to give in shops. To combat this, she would withdraw large amounts of notes from the bank and use a new note for each transaction - she would then end up with so much loose change it wouldn't fit in her purse.

It was only in hindsight that I was able to put together all the (at the time) seemingly innocuous and subtle changes in order to create a much bigger picture. By that time dad was already in a nursing home and when I thought back I really had an 'oh my god' moment.

I think for me the earliest thing I noticed was a change in his sense of humour, we were always on the same page humour wise, and could make each other laugh with just a look, or a raise of an eyebrow. That stopped.

Not knowing what day it is and asking the same question several times within minutes. Telling the same story over and over again as if it was tne first time. Four or five times in the space of an hour. Forgetting names of folk they see a lot and have known for years.

The first thing I noticed with my DMIL was that her default response to everything was "No" and she was not prepared to do anything to make her life easier. When I did not get a birthday card and four months later DH did not get a birthday card either, I knew we had a problem. It was another five years before she was diagnosed and my SIL, who was supposedly caring for her never ever accepted the diagnosis. Difficult times.

Now my friend is going the same way, living in one room of her three bedroomed house, unable to bath or shower, frightened of her drug using, bully owning neighbours, refusing to move, apply for Attendance Allowance or to do anything else to improve her situation. She only drives very locally, always on the same routes, and having always been very house proud, is now starting to hoard.

The first indication that DH was going into cognitive decline was when he stopped at motorway services and could not figure out how to get out of the car. At that point we had had the car for four years.

With my DM I didn't notice at first - perhaps being too close stops you seeing what's right in front of you. DM's brother, however, noticed straight away that her memory was slipping. He lives a distance away so doesn't see her too often.

With hindsight, she'd ask simple questions that she'd normally just get on with. She was very savvy until she wasn't, she couldn't do her crosswords, follow a book, use her phone properly or laptop etc. Things she'd usually just get. Her temperament changed, she became very argumentative, her filter (which wasn't great anyway) disappeared. Her daily habits changed too. Mainly just a load of little things that on their own wouldn't necessarily have meant anything but over time and with hindsight is something else.

Things took a rapid decline following a water infection. Delirium and hallucinations like you wouldn't believe. She struggled to recover and the cognitive impairment only worsened.

I have both POAs - finance kicked in immediately and of course the health one will only kick in when she loses capacity. Having said that, my younger DSis and I have had to deal with hospitals / doctors many many times over the past 18-20 months and they will now speak to us (only us) about DM's care. This is even with her capacity being quite good at the moment, thanks to Donepezil. She was officially diagnosed with mixed Alzheimer's / vascular dementia in June '23 and is now resident in a local home but is thriving. She does need round the clock care but mentally she's doing really well. We never told her about the diagnosis and she often comments how thankful she is that she's not like other residents who've got dementia!

It's a horrible disease and I'm dreading the day that she asks me who I am 😔

Getting lost and dawdling. I would say- get a power of attorney sorted out asap, before you push for a diagnosis.

With my mum, I went for a couple of years wondering whether she was just getting more forgetful because she was in her early 90s or of it was something more serious. It was also possible to excuse some of her behaviour and not answering the phone etc with increasing deafness, which she would never accept. Her eyesight was also poor and she told me very matter of factly one day five years ago that she had seen a man in a black hat walk down her stairs and out of the front door. Then two strange things happened within a couple of days just before Christmas. She rang me one night to ask me what my sister in law's surname was and that she had never known (she had been married to my brother for over 30 years before he died and had taken his name). A couple of days she rang me to ask me how to cook a chicken because she had never cooked one before. Things escalated quickly a couple of weeks ago on Christmas Day when her behaviour was really erratic, she had stayed the night with us and we could hear her talking to herself in her bedroom, she didn't get up until after 11, and she seemed very unsettled. She had spent every Christmas for almost 40 years with us and my mother in law (who also had dementia by then) and didn't recognise her. When I took her home later that night, she had been very aggressive most of the day and had seen someone completely different to my MIL. Over the next couple of weeks she calmed down a bit but was adamant she would never speak to me again if I spoke to the doctor. Over the next year things got much worse and she was plagued by constant hallucinations. I spoke to her GP in the summer of the first year and he was incredibly discrete. One of the problems was that my mum appeared to be reasonably lucid to other people who didn't know that she was giving crazy answers to questions they were asking about her family and last life.

When my mother in law developed dementia she knew it was happening and was terrified. She took herself to the GP, but within six months, it had developed really quickly. Most of her symptoms were around her short term memory initially and she woukd ask the same question 30 times in close succession. Then her long term memory
Was affected and she basically became a vegetable for the last three years of her life.

It's such a horrible disease and it affects everyone so differently. I think you will know without doubt when your mum has developed it. As someone else said, it's important to get power of attorney for health and finance in place. My mum always planned ahead and so organised lasting power of attorney 20 years ago for finance, and it was easy to get her to agree to POA for health on the grounds that she may h e a fall and be unconscious and I may need to make decisions for her. I'm so sorry you're having to think about this and I wish you well.

Thank you for all of these replies. I recognise some of this. Mum has always been difficult and lacked filter somewhat but I feel she’s getting worse.

Small things like:

• she instructed me to take a right in the car when I should be going left
• she caused drama about a food intolerance that was diagnosed 10 years ago. ‘Does X have a gluten intolerance?’ ‘Yes he still can’t eat gluten’ ‘what, I have to get gluten free pasta?!!’
• my dad has started with at-home dialysis which involves a series of steps. She wasn’t going with him to his appointments so I asked why, and wasn’t she going to also learn how to do it in case he needs help? No, that was his responsibility to know.
• When asked if she takes sugar in her coffee she said yes, then asked why someone put sugar in her coffee and she doesn’t take it
• ’offended by my behaviour’ and now not on speaking terms because of it. I had pointed out a few times that she was repeating questions I had already answered.
• normally makes a big deal of cooking dinners for us when we come to visit. She prepares by cooking and freezing food for the week. This time she hadn’t prepared anything and we had sausages several nights in a row because that’s what she happened to have in. I was then accused of being ‘unhelpful’ even though I offered to cook, went shopping for food, etc. I was ‘expecting too much’ even though this has been our routine forever and she takes great pride in catering for our visit. We stay in a hotel and make the kids sandwiches for lunch so it’s only dinner that we eat at theirs.
• small things like now staying up late when she’s always been in bed by 9pm before. Eating ice cream every day even though she’s always been health conscious. She’s gained a lot of weight in recent years.
• since my visit she’s been so upset about ‘my behaviour’ that she’s been crying and unable to eat, stuck on a loop. Apparently she goes over and over this, unable to let it go, and has berated my dad for not telling me off. He couldn’t work out what I had done to upset her. Seems very OTT even for her.
• in the last year she’s been sending me incoherent messages about dad’s health updates which I put down to stress as he’s been hospitalised for various things including sepsis.

I had a conversation with my dad, who said that he had noticed something seemed not quite right and he has spoken to her but she took this very badly. He said he watches her sometimes in the kitchen, checking and re-checking for something, repeatedly opening and closing cupboards, then going back to check.

My mum is a classic narcissist so I’ve always kept her at a bit of a distance and hence why I visit only once/year. She can be unpleasant, regularly falls out with people, lacks filter and has always been scatty and struggled to follow instructions like operating new tech, so it could be easy to dismiss this as just ageing. This time something just felt different and I thought maybe it’s stress or even depression due to my dad’s deteriorating health.

I will definitely get POA sorted asap, for both parents.

I would say too it's good to school yourself never to point out you' ve answered a question already. If dementia is in the mix (and even if it isn't) it upsets the other person. It's a hard time when you see yourself moving to a different kind of relationship with your parents. Less honest, ideally very patient... Good luck

With my mum it was losing her filter and not wanting to be bothered with anything that took a bit of organising. She never had any empathy to lose so I can't comment on that frequent sign.
Those signs were there a couple of years before any obvious memory issues.

This sounds very similar to my mum.

DMIL lost her sense of taste and smell and started not being able to learn new things. She could never spell our DD's name and she was born a good 10 years before diagnosis.

Exactly how we noticed something was wrong with my gran. My kind and caring gran began to say hurtful things to us, very quickly after these signs appeared her short term memory started to cause problems too.

With my nan i knew for sure when she couldn't remember going on a 2 week holiday visiting relatives etc.
But before that we were playing a board game and she seemed to be playing by her own rules - but not in a jokey way.

With MIL, it was loss of ability to do things she'd been doing for years. She stopped recording things on the video recorder, stopped using her cooker and using the microwave all the time instead, stopped reading books, couldn't write cheques anymore, etc.

Her actual memory was fine - she'd remember things as normal, you could have perfectly normal conversations with her, she carried on being self sufficient living in her own home, outward appearances were all fine.

OH visited a few times per week, nothing obvious at all, didn't even notice that she'd stopped reading, wasn't recording TV programmes anymore, etc. - why would you? It was only in conversations that OH would ask about, say, a TV programme that she said she'd missed - he'd ask her why she hadn't recorded it, but she'd just say she forgot. Same with meals, it was only when he looked in her fridge he noticed she had no "fresh" meats, salad, etc - it was all ready meals which she'd previously hated. Then one Christmas she wrote cheques to go in Christmas cards as normal, but the cheques were written incoherently. He started to ask more questions and take more notice, and that's when it became apparent that she simply couldn't do things anymore. He checked the video recorder and the programs on it were months old. Found lots of old "red" unpaid bills for utilities etc as they'd sent back incomplete/wrong cheques she'd posted to them, etc.

It was several more years until the memory loss, forgetfullness, etc kicked in, with her forgetting where she lived, reverting back to where she lived decades ago, forgetting she'd been married and had two children, thinking she still lived in her original home town with her brothers, etc etc.

@Mumof3confused There are slightly different signs for Dementia, Vascular dementia and Alzheimer’s. Age UK and NHS has good info. When someone already has a prickly personality, being sure about what you are seeing isn’t that easy to define. Also what can you realistically do when living abroad? If she has dementia/Alzheimer’s it’s life changing. Many people don’t want to accept it.

We have a friend who we believe has vascular dementia. He’s also deaf which does compound the issues. The issues we have noticed are:
Belligerent - sometimes smirks

Refusing to help, eg make a cup of tea
Not joining in with a conversation
Not starting a conversation
Slow speech
Loss of balance (difficulty navigating stairs )
Not driving (now definitely should not drive)
Confused in new places
Withdrawn, anxious and nervous
Does not laugh or joke
Takes a large suitcase of clothes for a weekend away
Eating food in a restaurant when it arrives
Wandering off and coming back with his own food when out - DH thought he’d gone to
the loo.
Repeats requests - wants to stay in a hotel when told it’s full. Keeps asking.

This was someone who disliked his job but when younger was confident about doing it and speaking in public. Was a raconteur and funny. After retiring at 60, became obsessed with family issues. So spent hours advocating for others and complaining about outcomes - created huge dossiers. Could not decide on what to do about matters when attorney for a relative. Relentless indecision.

DH and me would be interested if anyone thought the above was not dementia.

His wife says he’s passed all the tests and doesn’t have dementia. Might be a memory test though and intelligent dementia sufferers can pass these. As he’s been looked after by her for a long time and not been required to do anything for years, (she worked and he didn’t do any housework/shop/cook etc) he now seems to be incapable of doing anything much. It’s been very difficult for friends but pretending it’s not dementia isn’t of much help.

His wife, when staying in our holiday house with us, sets his breakfast out like in a hotel. Choices are presented. He gives his order. This started several years ago. We just don’t know what to say!

I am pretty sure my FIL has early dementia. All the family are discussing it but not with him or my MIL. His driving skills are not what they once were, gets confused about directions if not very routine local drive, repeats himself a lot, quite quiet and withdrawn at a meal out. Today our kids said that he had completely forgotten my husband changed his colour of hair (18 months ago) and thought they were joking about it even though he sees him weekly/fortnightly.