Things you wish you’d noticed and early signs

[Snakesmonkeysandgiraffes]

My mother is in her mid 60s and recently I’ve just felt that something doesn’t seem right although I can’t quite put my finger on it and because I don’t live nearby don’t get the full picture. I visited a few weeks ago and took her out for the day and noticed how incredibly slowly she was walking and following behind me despite the fact that I was walking incredibly slowly and almost coming to a complete stop so she could catch up. She was taking very small steps as though she was walking somewhere a bit steep but we were on flat pavements and in a shopping centre.

She was also very childlike on a couple of occasions when she asked for a drink, almost asking like she was small child raising her shoulders and asking like she was very unsure - this is despite the fact that she’s in her own house and can obviously help herself.

She’s been under an enormous amount of stress in recent years. Her long term partner died two years ago and she’s been quite lost although has managed to keep working ahead of retirement later this year.

My siblings haven’t noticed anything and just say maybe she’s overdone the house work or something- that may be true but I just feel like maybe we’re not connecting the dots quite yet. I probably sound quite paranoid - I can’t explain it. I just wondered if anyone had any similar experiences - thought something seemed off but nothing obvious or consistent and what to look out for.

Its very difficult for anyone to say what is normal or unusual for a specific individual, unless you know the person well and spend time with them regularly.

E.g. the slow walking could be something related to balance/inner ear, eyesight or angina rather than dementia. The child like behaviour could be related to loss of eceutive function, but equally could also be loss of confidence due to the effects of stress and grief.

It sounds like your concerns are very valid, but need to be looked at by a medical professional. If you can get a GP involved they can refer to a memory clinic if they have concerns.

Small steps and shuffling can be a sign of Parkinson’s, which can also be linked to dementia. You could ask her GP to call her in for a routine check if you think she won’t go herself.
For me, the biggest sign was not being able to do things they have previously done. For example not being able to use the mobile properly, always having problems with the computer (and blaming the computer when actually it was something very basic that they couldn’t do). Overtiredness - falling asleep briefly during conversations was another sign, as well as forgetfulness as you would imagine.

The child like questioning was very strange, almost like she was mimicking one of her grandchildren. I don’t want to upset her or cause a fuss unnecessarily if it is just stress but equally I don’t want to do nothing if something else is going on - a close friend of hers has recently been diagnosed with dementia and she gets very worked up and angry on her behalf- says her sons are making things up to have her ‘locked up’ although this lady has had numerous tests to confirm her diagnosis. I’ve mentioned the walking to my siblings and suggested if they notice it to say to her do you realise your walking a bit strangely, do you feel ok and see what she says and see if we can persuade her to get a general health check.

My father became quite antisocial, didn’t really want to come and talk to us when we visited, I now realise probably because he couldn’t follow conversations as well, he did however use the phone more in his last years than he had for the previous 30, never having previously called me for a chat, always leaving it to my mum, towards the end he was suddenly he was calling everyone in the contact list to tell them he had been held hostage, terrible at the time but I can laugh about it now.

This is the stuff I worry will be hard to miss because we aren’t seeing her regularly. She’s not super tech savvy anyway so not being able to work her phone/tv wouldn’t be out of character.

What is her voice like has it gone quieter or slurred and what is her hand writing like?

I would maybe focus on the change in mobility when talking with her and family. Its easier and some how less personal than directly discussing cognitive change. If you are worried try and frame it as 'go to the drs to see if they can help with your walking so you can keep active ' rather than going to drs to be told something is wrong. It is also ok to just keep a note of timelines so ira easier to tell if things are changing over time

With my mum we noticed that she stopped making choices. She would always ask what we were eating before making a choice in a cafe, and would dither about choosing new cushions or a new jumper, until we expressed a view. My poor sister got very irritated by my mum 'copying' her - always buying the same new Christmas ornament for example - until we realised what was going on.

She also stopped reading, having always devoured books. She simply could not follow the plot, although it took a 9 hour plane journey where she stared at the back of the seat in front rather than reading or watching the screen for me to realise how bad it was.

On that trip she also became very needy - wanting to know the exact plan for the day including when and where we were eating, and getting very upset and quite aggressive if things changed or we wanted to be flexible. She would also be ready hours before we needed to do anything - on one occasion being up at 4am, fully dressed and sitting on the end of her bed.

Of course in retrospect it's obvious that she was terrified as she knew something was wrong, but it was so incremental that it was only later that we realised.

Her hand writing seems to be the same (I’ve just had a birthday card and recognise it as being hers). She is someone who has fumbles a bit with words doesn’t always express herself clearly - I would say she’s done that a lot in recent years and it’s a bit more noticeable but had just put that down to aging/stress as it’s not been extreme and something we all do from time to time. She’s also come out with the odd thing recently - disclosing a not very nice ‘fact’ about her late partner in terms of a particular view he apparently held - we were quite shocked when she said it as it doesn’t chime at all with the person we knew who we we’re extremely close to. I can’t tell with that sort of thing whether it’s a lack of social skills/awareness (she was proclaiming this quite loudly in a cafe and people were obviously looking) or something else.

A couple of things we noticed with DH's aunt. Getting very stressed about arrangements - checking and double-checking a restaurant was booked, for example, and turning up 30 minutes early just in case. Checking keys were in handbag multiple times, that sort of thing.

The other thing was repeating stories and anecdotes. The same little joke or comment, said four or five times within a couple of hours. We all forget occasionally who we've told something, but this was obviously not right.

This was all while she was ostensibly fine, driving, running a house, shopping etc, but things went downhill pretty quickly.

Oh god her handbag. She does this thing where, if she needs to get her phone out or purse or something, say because her phone is ringing or paying for something she acts like she is being really rushed and hurried (she never is) and scrambles to get whatever it is out.

In the years leading up to serious discussions about whether DM had dementia, she started to give confusing and complicated explanations about things that turned out to be fairly simple. She would get annoyed if I tried to clarify what she was saying but also annoyed if I didn't seem to understand. Afterwards she would claim that she'd described it properly to me from the start but I just wasn't listening and/or that someone else had failed to explain it to her properly. There were also lots of times when she claimed things 'stopped working' and loads of things around the house were replaced but there was usually a reason why the replacement was no good either. So for example, I just couldn't seem to understand what she was telling me about her vision problems and why she started to have to visit the eye hospital regularly. She claimed that there were no letters etc and someone just calls her to tell her to go to the hospital the following week. She was very defensive when I tried to understand and thought that sounded odd, and claimed it was since Covid that it was all done this way. When I started having to take her for appointments I realised she had letters but was throwing them away, so the 'call' was actually a reminder text. Now that I know what eye condition she has, her explanations sort of make sense but in a fairly abstract sort of way.

She had some physical illnesses at the time and had other stresses (eg death of her sibling etc) so it was easy to assume that was behind her just not quite being herself. Looking back, she obviously also put some effort in to trying to pretend to be fine and cover up her cognitive problems by claiming misunderstandings were down to her poor vision. I think this is probably fairly common.

When DM eventually agreed to go to the GP to discuss this, the GP didn't seem too concerned because DM could 'pass' a very simple memory test quite well. Thankfully she did agree to refer her to the 'memory clinic' for full assessment though. I have learned from DM's experience that not everyone starts with the memory loss issues that most people would usually associate with dementia. DM has a very clear diagnosis of alzheimers and vascular dementia but can remember exactly where she has left things (as well as any of us can) and remembers recent and past events fairly well. But she can't find the right words, gets very confused if asked to do a series of simple tasks (eg. put your shoes on, put your coat on then pick up your handbag), needs to be reminded to eat/drink, can't operate a microwave/kettle and frequently mixes up 2 or more situations (eg. wanting to talk to the chiropodist about her vision problems).

MIL had vascular dementia and Alzheimers. It made us hyper aware of others and their early behaviour changes.
Unfortunately we are all noticing DH (57) and his anything new regression - little things... we bought a cling film dispenser 5 years ago. Now whenever he uses it he forgets to close it. We have sky TV, they added disney+/ hbo etc to our "apps"... "how do I?..." every weekend. I've had to remove candles from my life as they get lit and forgotten. Of course he won't go see the doctor as it is all a bit too vague and he is fine at work etc, but retirement is not going to be the experience either of us hoped for. Saddens me.

What you’ve noticed isn’t paranoia. Subtle changes in gait (small steps, caution on level ground) and an unexpected "childishness" in behaviour are precisely what are often described as the first warning signs, when everything else seems normal: the person is still working, managing their daily life, and it’s hard for those close to them to notice, as the changes are slow and inconsistent.

It’s also typical for sisters and brothers not to notice this: you see her once every few weeks, so the changes stand out more to you, whereas for those who are with her every day, they blend into the routine. This doesn’t mean they’re wrong or you’re right; you simply have different perspectives.

The loss of a partner and the stress involved can, in themselves, cause similar symptoms (depression, anxiety, even temporary cognitive "fog" due to grief and feeling unwell), so this isn’t necessarily a progressive condition. But it’s worth getting it checked out, rather than waiting for something "unequivocal" to emerge - gently suggest she sees her GP; you could tie it in with something neutral (for example, "let’s have a check-up before you retire") so that it doesn’t sound like an accusation or a cause for concern on your part.

If this has happened only once then it could be due to some stress but if this has been occuring frequently and her guardians or care taker has noticed frequent forgetfulness, change of behavior then it might be reflecting a serious issue. You can observe her for a couple of months; maybe 3-4 and then if this persists, you could visit a health professional who could provide an exact diagnosis.

Because we don’t see her regularly, not even every week I’m worried we can’t really monitor her properly. I think I will have to find a way on my next visit to ‘test’ her - probably sounds a bit mad but basically not give her a chance to cover anything up if something is going on. Not sure exactly what to do but it will have to be subtle.

I sat down and reflected on my recent visit and wrote a list of everything that she did or said that seemed off and altogether it’s quite startling but each individual thing I would
probably not have paid much attention to on its own:

1. The odd slow walking
2. The strange disclosure about her late partner
3. Mentioning she’s lost particular items of clothing in her house - she wears a t-shirt under her work uniform and has loads all the same. Claims she doesn’t know where they have gone but she washes them all at home and doesn’t get changed at work. They can only be in her wardrobe, the laundry basket or the washer or dryer. She does not have a cluttered untidy home.
4. Referred to microwave ready meals as ‘ping’ meals. I knew what she meant but I’ve never heard her or anyone else call them that before.
5. Said she is a fan of a particular genre of books and wondered where an old book was we used to have in the house that was hers - this wasn’t hers it belonged to me and we threw it out when cleaning her loft last year - there was a slight row about it at the time as a sibling wanted it as is quite decorative.
6. Struggling a bit getting train tickets on her phone but as I say she’s not tech savvy so easy to write that one off
7. Being hugely defensive of her friend who has recently been diagnosed with dementia. Crucially my mum herself queried this a while back. Now that she’s actually been diagnosed she claims her children are making stuff up about her to ‘get her locked up’ and ‘take away her control’. I reasoned she was upset about it but now I wonder if there more to it.

I’m going to keep logging everything. Some of the above may be nothing but with a fresh pair of eyes it’s not so easy to dismiss as her just being a bit muddled on a one off occasion.

Your post resonated with me. My mum always loved books. Hindsight is marvellous. She would buy books and add them to her library but not read them. I would gift her a book she would love and when I asked about it it was obvious she was pretending to have read it. I was puzzled by this, but it didn´t twig.
Then when her partner went back to England (we are in Spain) she was hysterical. I called it nervous, but it was more than that. From someone who built a successful business in a foreign country and brought up 2 kids on her own. Also her phone, her washing machine, her oven and her dishwasher were all broken/not working properly. When we used them, they were fine. The technicians were called in by her, they were fine.
OP I live 585 Km away from her and I was the one who realised what was going on after a Christmas visit. My brother hadn´t realised at all and he saw her every week.
Now her Alzheimer/brain tumour/vascular dementia are more advanced her walking is excruciatingly slow and she uses a wheel chair outside or we would never get anywhere.
If something feels wrong, it usually is. You just have to ascertain what it is. Don´t let it pass.

For my mum (Alzheimer’s) who we saw every couple months when she was early 70s it was increased forgetfulness in general but more than my dad who was the same age (so not just ageing iyswim as I had a “control” parent to compare to at that stage).

Then it became obvious post covid that she had massive anxiety about everything. In hindsight this was almost certainly because her world has shrunk in covid (dad had to shield as he was at the extreme end of vulnerable) - so everything apart from the home was “new” and she didn’t have the executive functioning to handle it.

The trigger point for me realising this was beyond forgetfulness and anxiety was when they visited and we were out in town and she had a sudden look of panic on her face as we waited in a busy square for my dad. A few minutes later we were waiting at a crossing for the green man and I caught my dad put his hand out and hold her back as she had started to step into the road.

Dad also has Alzheimer’s and it was very similar - anxiety about things increased massively that previously wouldn’t have worried him. He would ask the same questions or tell me the same story a few times within a single phone call. Also an ever increasing overwhelm at having to do anything “new” or that he didn’t do regularly.

Yes, inability to make choices or decisions (and to plan and process), shuffling gait, no reading, turning up very early for things - looking back, these were all early signs of DM's dementia. Also increased use of stock phrases in conversation.

@usedtobeboss3 The use of stock phrases was (with the benefit of hindsight) also a sign with my Mum. I can only assume these are things she said when she knew she wanted to say something but couldn't work out what. One of her go to phrases was 'That's lovely'. Which about 80% of the time was a fairly appropriate response but she didn't seem to even notice when it was absolutely not appropriate (eg in response to being told someone was ill).

Repetitive 'safe' conversations, or recalling events in her past almost on a loop. Guiding the conversation to these topics to avoid/disguise talking about anything unfamiliar.