Did your parent's dementia start like this?

[choisia]

And how did it progress? I know everyone is different, but just trying to get some handle on how things with my mum might develop, and what we need to be thinking about for the future.

For the last maybe two years, we've been getting increasingly concerned about my mum (mid 70s). She's become more forgetful and more repetitive - telling stories frequently, losing things a bit more - but has also become more withdrawn and anxious, not wanting to go out much any more (having previously been fairly sociable). She's also developed terrible insomnia. I think the Covid period both exacerbated and masked some of this. My parents also moved house about 18 months ago, which was stressful but necessary.

More recently, perhaps in the last 3-6 months, things seem to have accelerated a bit. Mum's now sometimes forgetting basic words as well as facts or names - not all the time, but she's sometimes unable to 'find' a normal word mid-sentence. She's misremembering things that have happened (eg she'll swear blind that an event or conversation either happened or didn't, which we know is incorrect). She's repeating not only stories, but also questions, sometimes two or three times in the same conversation. She's increasingly flustered by things she would once have taken in her stride - eg we went over for lunch today and she was cooking a fairly simple roast, and I had to gently take over, as she was really struggling with how to get things ready at the right time, how to tell if the meat was cooked, getting very anxious over the whole thing. We played a couple of board games with the kids (games that she knows very well), and she was very confused about how to play. We were having a chat about my grandparents (her parents), and she didn't have the vaguest idea of what year her mother died (she would once have known the exact day without thinking). She also got quite cross with my dad over a couple of very minor things, which he was totally blameless about. But I don't want to exaggerate the issues - a lot of the conversations I have with her are still pretty normal.

I'm thinking this may be the start of dementia, but I want to know whether I'm jumping to conclusions and this might just be ageing, or whether others experienced similar symptoms with their parents. I feel so sorry for my mum - I know that's she's worried and unhappy about her memory, as she's talked to me about it. She's had a memory test and the GP has referred her for a more detailed test, but warned it could take ages to receive an appointment.

As far as I can see, there's nothing much immediate that I can do - except talk to her and see her as often as I can (I work FT and don't live that close, so it's not easy), and try to take any pressure off her by inviting them to stay with us, or suggest we go out for lunch when we visit. I try to suggest that she still tries to go out, see friends, and get a bit of exercise, but she's very resistant. We've done LPOA, so that's sorted. My dad is very capable, so she's in pretty good hands day to day (though his own memory is not what it was, and I do worry what would happen to mum if he suddenly died or became ill). I just have no idea really if my worries about dementia are justified, or how quickly things might deteriorate if I'm right. Thanks for reading.

[Mirabai]

It might help - but the dementia needs to be properly diagnosed by a consultant who then knows exactly what type, how far progressed, and what drugs in what combination would be appropriate.

Your GP would be prescribing randomly and blind. Bear in mind GPs have little mental health training, little training in dementia and are not qualified to diagnose either serious mental illness or dementia, and they don’t know the drugs and their effects as well as specialists who are prescribing them on a regular basis.

[choisia]

Interesting about the ADs. I was encouraged by a poster (on here or another thread?) saying their relative had been massively better with a combination of ADs and dementia meds. But maybe it won't help? So hard to know. Mum's always had anxiety, and looking back now, I think the apathy and general slight cognitive decline may have started some years ago, though it's only become properly noticeable recently.

@Badger1970 I'm sorry about your dad, and thanks for the words of warning. Mum's had lots of stomach problems, and they've run loads of tests but can't find anything concrete. It might be IBS but she's resistant to that idea - it doesn't help that she doesn't have a great recall of exactly how often she's felt unwell, and when.

[Badger1970]

Just a precautionary word here - my Dad was starting to get a bit "muddled" about things, especially using his phone/TV and as he'd recently had Covid, his GP just dismissed it as long covid and said not to worry. His decline continued, but having worked as a care assistant it wasn't really adding up for me. Eventually we badgered the GP into doing some tests, and it turned out that he had liver cancer (and the confusion/memory issues was hepatic encephalopathy from liver failure). It's rare, but it's so important to get the right diagnosis.

[KnittingNeedles]

This is so true. Before dad was admitted to hospital mum was giving him some sort of sedative in the evening in the hope of a decent night's sleep for them both. Sometimes it worked, sometimes it didn't. People with dementia struggle to realise the proper time for doing things - dad would be up at 3am having a shave, or asking about breakfast when it was getting dark at about 5.30pm.

[Mirabai]

Btw dementia impacts sleep and wake cycles. It may not be anxiety causing the insomnia, but simply the dementia.

[Mirabai]

I wouldn’t let a GP give antidepressants to a dementia patient. First they can have distressing side effects for the first 3 weeks while they kick in which would be upsetting to someone who doesn’t 100% grasp what they’re for and is already confused/disoriented.

Second her dementia has not yet been diagnosed, so the GP doesn’t even know what type they’re dealing with yet.

Thirdly, ADs are not found to work well with dementia related brain changes.

Finally, some ADs are linked to increased risk of dementia.

[choisia]

Thank you all yet again. I think you're right about thinking ahead, and that the next step is to have a chat with dad about future care plans. I think that might be easier if and when mum does get a diagnosis (hopefully sooner rather than later), as I suspect that would make it easier for both of them to accept that things are going to change and that more care is going to be needed. I've no idea about local care options as I moved away years ago, but they've lived in the area for decades and have got lots of friends of a similar age and older, so I should think they'd be able to get some recommendations. My sister and I are very much in tune about everything, but she lives 5 hours away and I'm an hour and a half, and we both work full time and have kids, so very regular support isn't really viable - but we can help remotely as much as we can.

@SammyScrounge that story about your mum and the coffee is just so so sad. It reminded me very much of my mum - although I haven't quite had an incident like that, the roast lunch moment was rather similar - she was just totally overwhelmed and flustered about what she needed to do. She's mentioned to me that it's happened another couple of times recently, when she's been making a favourite recipe and forgets what to do half way through. She's also struggled with things like the washing machine in the new house. It doesn't help that she's always hated anything techy - won't have a mobile or use a computer etc.

Another frustration today was that I found out that the GP prescribed her anti depressants months ago (which I've thought for ages she ought to try). She thinks they're just sleeping pills (which they sort of are - she's not sleeping but that's probably partly depression and anxiety) - anyway, she took them for a couple of days months ago, they didn't 'work', so she just stopped. It's another facet of the memory loss that she doesn't have a clear grasp of the timeline of when she's been unwell (she's had stomach problems as well as insomnia), so she comes up with rather random theories of cause and effect. I've tried to impress on both mum and dad that she really needs to keep taking these meds for a good couple of months to see what happens - but she can get very stubborn and cross about these things

[MarshaMelrose]

A problem with dementia is the declinevis unpredictable and you don't see it happening until it's happened. You can often find yourself playing catch up as the situation changes. The biggest thing I learned was to try to keep ahead of the situation. They're going to need carers. Definitely. So although they might not want them now, you need to start thinking about what carers you want, when and what they'll need to do. If you're going to use an agency, start finding them in your area and get prices and availability, etc. Be ready so when it happens, you're not scrabbling round but you're ready to go. It's less stressful and you can make considered decisions rather then ones out of desperation.

I'd also start to look at homes. Not that your mum needs to go in one yet. But start to look where you'd like her to go so that you have options if something unforeseen happened, like maybe your dad got ill so she could go for respite care. If you can find two or three that you think will be good for her, it relieves thecstress later if/when she needs to go in.

It's not only a distressing disease for relatives but its also so stressful trying to make the right decisions about her care. Being prepared for each next stage really will help you have time make considered choices rather than desperate ones because you've no choice. Especially if you're working, it's so helpful to have numbers to ring when something unexpected happens.

[funnelfan]

Oh, and the tipping point for us was when her lovely neighbours let us know gently how much support they were having to give mum, basically cooking her tea for her every night because she couldn't work the oven or microwave any more. Mum was (and still is) very good at masking on the phone and telling everyone she could manage. She is now on a 4x daily care package, but it took a minor health crisis and the hospital refusing discharge until she accepted it.

[funnelfan]

My DM was slightly different (hers is not Alzheimers) but yes to the apathy stretching back years now thinking about it, 5 years before she was diagnosed. I wonder how much is cause and effect - lack of stimulation makes brain decline faster, which makes them feel apathetic? Also yes to the reading difficulties - I put it down to her macular degeneration but I sent her a birthday card with nice simple big writing and she didn't recognise what it was. And she has always been big on greetings cards, keeping Clintons Cards going for years solo handed.

DM is still quite self-aware and generally has capacity still, so she knows she has dementia, she's rung me one day to apologise for making a confused phone call the day before. She's healthy in body as anyone could be in their early 80s, so I can't predict how this is going to go but I suspect as she continues to lose weight through lack of appetite, this will be a factor.

It's stressful, but then reading some of your stories it makes me realise how well DM is actually doing at the moment. As I keep saying to my sibling - this is a marathon not a sprint and we have to pace ourselves otherwise we'll be no use to anyone.

[SammyScrounge]

The first time I really understood what was wrong with my Mum was when I visited her and, as she usually did when I came, asked if I wanted coffee. She disappeared into the kitchen for ages then reappeared holding a big jar of coffee and a fork. Tears were pouring down her face because she couldn't remember how to make the coffee and had brought the jar and fork for me to make it.

The day before she had made it as usual. After that she would forget the sequence in lots of every day processes. The washing machine was too complex for her, she forgot how to work the remote control...it was awful for her to experience this and awful for us to witness.

[smileladiesplease]

Op been literally through this and it's exactly as you describe. Feel free to message me for any tips/help it ain't easy xx

[Mirabai]

It’s remote until it happens. And it all happens quite quickly.

Your dad will get to a point where your mum can’t be left alone, so he will be stuck in the house 24/7. You can get agency carers in but a. They’re constantly changing and b. Managing the carers is a job in itself.

My uncle’s second wife was diagnosed with dementia shortly after they had just moved to a new house. He decided to move to a retirement village - and honestly it was the best decision - they moved go an independent living flat so it didn’t really feel like a care home at all. But there was so much support for his wife, it meant he could go out and enjoy life without constantly having to worry about her and manage the carers.

I’ve managed the care of a different aunt with dementia - it was really hard work.

[KnittingNeedles]

@choisia we are currently going through this with my Dad. Started 5 years ago with slight confusion and forgetting what he'd had for lunch. His deterioration was not helped by the pandemic where all support groups stopped and the GP basically washed their hands of him and left mum to get on with it. You are absolutely right about social life shrinking, Mum has not been able to do anything as dad couldn't be left.

Now he is most definitely in the end stages. He's currently in hospital, not directly dementia related, and has no idea where he is. He recognises me and my mum, not my kids. Very sleepy and when he's not sleeping, he's very shouty and sweary which is SO not like him.

My advice would be (to use a very MN phrase) get your ducks in a row. Start googling NOW for Alzheimer's groups in your area - many run regular coffee mornings, pub lunch clubs, dances etc - and encourage your parents to go along. Stress to your dad the importance of that support network and connecting with other people in the same boat as him. Start looking into carers, or what day centres and things social services might provide. I'd also advise giving social services a ring and just chatting about what sort of assistance they might be able to provide.

Facing up to the fact that this horrible, horrible illness is only going one way is very tough. For your dad and for the rest of your family. If you have siblings, you are all going to be needed to support your dad. My mum still thinks i'm visiting Dad in hospital. I'm not really - OK I am going into the room and chatting to him and feeding him chocolate. But 5 minutes later he will have no clue I've been. It's about showing Mum that she's not alone.

[choisia]

Thanks all. I do really worry about how my dad will cope. At the moment, I have almost the opposite issue to many posters I've seen on here, in that my parents (dad in particular) are very undemanding. They almost seem surprised that I should consider their troubles as in any way my responsibility, and they're pleased when I go over there but keep emphasising that they know I'm busy with work etc, so any time I do go over they see as a bonus. So far my dad has been incredibly patient and gentle with my mum's issues, particularly given that they have quite an impact on his life - I think I'd be far more impatient and frustrated than he is. He's also done a really good job of trying to help with domestic stuff, which he never got involved in before.

But I do worry. As I mentioned above, he's got a real horror of mental decline, and I think he'll find it really distressing if and when mum really starts to move into that territory. He's very gregarious and has a very active social life, which is already shrinking because of mum and is likely to shrink further. I can just foresee him getting sadder and sadder. I do wonder about assisted living, but I think they'd both struggle to embrace that idea when they've finally just been persuaded toove house (after 35 years) and have got the new house how they want it. I don't know how he'd feel about getting carers in though. It all feels so remote at the moment (mum and dad would probably think carers are for 'old' people, not people like them) - but actually I think it's much closer than it seems.

[TennisWithDeborah]

My mother started displaying symptoms of forgetfulness and repetitiveness in 2012 when she was 80. It got worse. My father buried his head in the sand and refused to pursue a diagnosis, getting very defensive if I ever suggested an appointment with a GP. He was physically frail with kidney disease and very stressed out by my mother but he had no plan in place for her in the event of his own death or serious illness, which was frustrating. He became cross when I tried to “interfere”.

That altered in November 2019 when my mother left the house late at night when he was asleep, and wandered through the streets wearing thin clothes looking for goodness-knows-who. A dog walker came across her and rang the police, who contacted me because luckily my mother recalled my longstanding landline number. I was relieved in a way because “the authorities” were now involved without my having to be the bad guy (I asked the policeman to refer my mother to social services for me, but I told Dad that the policeman had insisted on doing the referral because he was obliged to).

Social Services got in touch a few days later, as did the GP, and thankfully things were eventually put in place, starting with a formal diagnosis at memory clinic. My father died a year ago which was sad but it was a huge relief knowing that my mother had a care plan in place. I don’t regret that white lie about the policeman.

She is nearly 91 now and in a poor state. Terrible disease.

[IthinkIsawahairbrushbackthere]

@Confusedsyravauser I realise now that my mum went off reading. I put it down to poor eyesight but in hindsight I realise she could not make sense of what she was seeing beyond a page or two.

Her eyesight is very poor and she rarely wears her glasses but I don't think they do much for her anyway.

She can't read a book or a letter but she can recognise some words - for instance she had a card from a friend with a very distinctive signature and as soon as I showed it to her she recognised who it was from. Another time she had a card that said "Thinking of you" on the front. It might have been a lucky guess but she read the front. Had no idea what it said inside though.

It's as though there is a very limited amount of processing power and it can only cope with a few words before having to reboot.

[Mirabai]

Yes exactly how my dad started.

Financial PoA is actually more important in the short term, because she will lose her capacity to get into her online accounts.

If your parents have savings or health insurance it is worth going to a private geriatrician/ neurologist to speed up diagnosis as the drugs are more useful in the early stages. An MRI will be involved which will be about a grand.

Also worth sitting down with your dad to consider finances and working out how he will deal with her. Will you get carers to the house or would he consider a retirement village with independent or assisted living which would give him a lot of support when she deteriorates. Dementia is an absolute killer to be the carer for, bear in mind that he is old himself and he will find it very very challenging.

[Confusedsyravauser]

Does anyone know how common it is to forget how to read in the early ish stages? I am suddenly realising that I think my dm can no longer read. But she is still cooking and looking after herself physically and she was quite a voracious reader until reasonably recently.

[spanieleyes]

Yes, my mum too. She then lost her ability to tell the time and then read. She developed Lewy Bodies dementia and gradually forgot just about everything- talking, eating, walking- until eventually she just slept. Dreadful disease.

[Eightytwenty]

Hi sounds almost identical to our experience. It took several trips to the GP for her to ‘fail’ and then to be referred to the memory clinic. That was only 1 year ago and since then she’s passed her fit to drive test and is still living independently. I try and take each day as it comes but it is very stressful especially when juggling work and children.

[Alonglongway]

My mum's alzheimers started like this in her late 70s. She's now 92, in a nursing home, only remembers me and not me all the time. My dad had vascular dementia which progressed more rapidly and differently. He died last year.

The book I found most useful for supporting mum was Contented Dementia by Oliver James, taking care not to read ahead of the stage she was at. It gave some great ideas on how to help and how to understand what she was experiencing.

We found a dementia clock very useful. We used telecare with some success when they were still at home - sensors to check that someone was up and about and a smart plug that would alert us if the kettle had not been used by a certain time in the morning.

[Clovacloud]

@Valleyofthedollymix eventually she died thankfully of a massive heart attack in her sleep. She didn’t know a thing about it and although it was a shock, it was a kinder death than the one she had coming from the dementia. She had a lot of co-morbidities with the dementia. So she was diabetic, had a heart condition, blood clotting issues, she’d smoked 40 a day up until she was 63. So I think a lot of that contributed to the dementia coming so early in the first place. Her mother had the exact same thing but she was well in her 80s by the time it took hold.

[Valleyofthedollymix]

(Apologies for the Apathy derail)

[Valleyofthedollymix]

@Clovacloud gosh that's fascinating. I feel such an idiot because I really had no idea and I think of myself as reasonably well informed. And how terrifying that she was only 58 (that's me in five years...).

She's actually far less bitchy than she used to be, so that's something. She always used to be really nosy and constantly comparing herself to others. And comparing her children unfavourably ("so and so's daughter lives in a proper house", "so and so's daughter had a proper wedding"). But in a way it's a sign that she's no longer interested in other people's lives and part of the apathy.

Sorry, if you don't mind me asking, what did your MIL die of? It feels awful of me to even think this, but I'm wondering how many decades of this we might have to be dealing with.