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?

The very earliest signs were that I felt my mum had changed a bit. No longer as nice, kind, loss of empathy, more selfish. Only a bit, but noticeable. To me anyway. This was way before memory or functional problems,

It was short-term memory loss, inability to retain instructions that had 2 or 3 different steps, and general confusion. She also had a lot of hallucinations- saw my dead dad and small children in her flat.

It was a slow burn and she was good at masking it. It only really became apparent when I went to stay with her for a week and she just couldn't keep the mask on the whole time.

She was also in complete denial and I'm not suprised. It's terrifying for people.

I ended up broaching it with her by saying that I'd noticed her memory wasn't so good and there was lots that the doctors could do now if they caught it early. But it was an extremely uncomfortable.conversation and she still didn't see anyone for at least 6 months. It's a.very hard reality for people to face.

Have to you spoke to your dad about it?

We missed my MILs early signs of dementia as we put them down to menopause. Brain fog, repeating questions in new situations she often got a headache so she couldn’t leave the house.

Early signs can be subtle and they are different for everyone. If you think there is something wrong, then it's worth investigating because you know your parent and what is normal for them.

For my dad it wasn't so much the forgetfulness but "inappropriateness" - he would use the wrong word for something and get quite cross when you corrected him. So would say he was going to the warehouse to get a pint of milk instead of the shop. Or once when he was at my house thought he needed euros to pay for something because he was away from home and therefore on holiday, even though he was in the UK still. Or not being able to make small talk in the same way as before, at a family gathering in his house he just couldn't keep up with the chat and contribute as he would have done previously. He struggled to follow the plot of tv dramas which were too convoluted - things like Line of Duty which he had previously enjoyed. He stopped using his laptop, and didn't like answering the phone, probably because he didn;t know what to say.

This was all WAY before the forgetting what he'd had for lunch or asking when he was going home to his own mum and dad.

My lovely, gregarious, fun mum started to become quieter and rather apathetic. And she used to say a few strange things. Those were the earliest changes I remember.

I used to have regular long chats with my mum on the phone and gradually noticed that she was cutting them short and saying she mustn't keep me as I was so busy. Forgetting arrangements eg us coming to stay and getting cross when I reminded her. Lots of repetition. Biggest red flag was forgetting how to get home from my aunts house and getting lost on the drive home.

Agree! Little strange reactions or comments that were a bit hurtful and out of character and only occasionally , but looking back I think that was the beginning of it all.

I have been noticing things recently and have discussed with other family members. DF is in a home with dementia but DM is beginning to show signs. She has no filter now and says things she wouldn't have dreamt of before, I have to repeat things to her before she takes them in (simple instructions), tells me the same thing over and over, I asked her to shut my car boot the other day came back and found she hadn't and my car had been open for an hour (luckily nothing taken)

Oh goodness, it’s such a tough thing to think about, especially when you’re not close at hand to help/intervene. Had your Dad talked about it with you, perhaps he’s noticed changes too?

My mum struggled a bit with her memory, but it wasn’t super obvious, and she would sort of make up new words ie covis for COVID, ichihuahua for chihuahua. She also struggled with numbers and couldn’t write numbers down in the correct order, so writing cheques and tel nos became harder.

There were changes to her character, some more subtle than others; she became less empathic and her emotional responses seemed to be much blunter. She also found it difficult to follow simple directions or instructions ie how to find the loos in the supermarket, or follow new recipes, but covered it up by blaming the person giving the directions or the way the recipe was written. Mum became quite inflexible in her day to day routine too, and didn’t find it easy to deal with changes in her schedule.

it took quite sometime for her to receive a diagnosis and she was really angry with me for ‘’making’ her go through the the various appointments with her doctor and psychiatrists.

Although your mum’s GP won’t be able to discuss her with you, I wonder if you might call them and and explain your concerns? They may be able to suggest a ‘routine checkup’ or something like that where they can broach the subject.

With my stepdad, deteriorating sense of direction. That was about 5 years before any other signs. Then difficulty coping with multistage timers when cooking. That led to increasing lack of patience over the next 3 years and a steady increase in falls before the memory loss and confusion really became noticable.

In my experience it’s so gradual and easy to write off early signs as being due to something else. In my mum’s case it was (looking back) things like being unable to grasp new things - simple things like operating my new coffee machine where all you have to do it press a button. Losing interest in cooking and making the same thing every night (obviously a loss of confidence). More negativity towards my ideas. Constantly making excuses to explain her behaviour.
It’s shit and one of the most stressful phases for me was when I knew there was a problem but was in denial. Getting a diagnosis can be a LONG process, especially if the person is defensive.
Get power of attorney sorted now while you can.

@Lampan that is such a good and important point to make.

Power of Attorney is so important, not necessarily now, but for the future. Really something we should all consider regardless of our current mental or physical health.

The key symptom is you noticing they’ve got dementia and them and everyone else denying it.

Beyond that, it’s any and every change for the worse in personality and capability. Some people get lost on the way back from
the shop; some people stop washing; most but not all people turn selfish; very selfish; most people lose weight.

The key symptom is you noticing they’ve got dementia and them and everyone else denying it.

Agree with this. I was saying for years I thought there was something wrong but I couldn’t put my finger on it.

I thought my aunt had dementia because she turned into a really nasty piece of work. She was rude, demanding and malicious and I was quite shocked by her behaviour. A few years later she was diagnosed and had to go straight to a home.

Upgraded her phone like she had done multiple times before and just could never work it.

Lost her balance

Lost her filter.

Reading with interest as I have similar concerns.

Lots of small and subtle things. Using incorrect words for things or not being able to remember words. Repeating the same conversation / story multiple times even within one phone call, only driving locally (I think she can't work out how to get to other places but won't admit it), not using a new kitchen appliance as she can't follow the instructions etc.

Sorry to jump on your thread and ask but I have POA - can I ring her GP?? I have tried to have a subtle conversation with her about memory but she didn't bite.

Forgetting things like whether she had started the dishwasher. That was years ago. Now it's having the same conversations on repeat multiple times each visit.

Looking for something and asking like times what we are looking for.

Not washing. Forgetting to wash hands after the loo. Wearing the same clothes day after day.

Focused on unhappy childhood rather than long happy marriage to my dad.

Hoarding was always a thing, now it's a problem.

Very very early sign was a drop in confidence. She no longer had the confidence to deal with incoming mail, which she used to be methodical about, and stopped going out alone. The mixing up of words and mild personality changes came a couple of years after that. That's when actually made it to the GP, had a CT scan and were told it was cognitive impairment - looking back now I see that's just the starts of dementia.

FIL had Alzheimers.

The very early signs would be apathy. He stopped painting and going to his Italian class which were his new hobbies.

He also played chess and he started losing. His friend also stopped asking him for lifts, turned out eventually he hadn't felt safe in the car.

He had always had health anxiety but it got worse and he made appointments with his GP over and over. The change went unnoticed by his family and his GP as he had always been like this- however now he wasn't remembering what he was told so kept going back.

Actual trigger for diagnosis was when we were in the car with him and he didn't understand the road signs on a familiar journey. I refused to be in the car with him again and it finally dawned on MIL this was more than him being odd.

Misplacing her door keys repeatedly was the first sign. We understood for sure what was happening when she went out locally in her car and couldn't remember how to find her way home.

It depends which POA you have. There is one for finance and one for health and welfare.

The health and welfare one only becomes valid when the person loses capacity.

However, regardless of PoA you can ring the GP at any point. Without the person's permission or the PoA kicking in the GP can't tell you anything, but you can tell them things that they can then act on.

Doing really daft things. I went to feed the cat when my parents were on holiday and their front door was wide open. My mum hadn't thought to pull it shut behind her as she went out to meet my dad at the car.

Then she decided she wanted to go and visit a friend on her own. She got on the wrong train and my dad had to go and get her.

My dad still kept laughing this all off as funny wee things but clearly, it wasn't funny.

Echoing the need to get PoAs sorted asap.

Subtle personality changes (being irritable with me, lack of patience with grandchildren, tossing post onto the dresser instead of dealing with and filing carefully after, that sort of thing)

Later on came the coping strategies my person with dementia developed - writing lists to remind themselves of the tasks to be done, so many lists, piles of them, you could not disturb them as that provoked panic and alarm/unwillingness to do anything 'new', staying local and familiar/loads of masking so that an unsuspecting person would have a small convo and come away not realising that they had had yes no answers with big smiles and nothing more/always having the same meal when we went out, you can't go wrong with a jacket potato etc.

Big hugs for anyone dealing with a person with dementia. It is a hard path to travel. Mine passed away, and such a relief it was, too. I say this bluntly, some might think cruelly, but no. It is a brutal disease.