Cockroach cafe - Spring to Summer 2026

You keep having the same conversations every day but you say she doesn’t have cognitive decline? Are you sure she doesn’t?

What sometimes / eventually worked with my dad was to position the help I thought they needed now as something they might need in the future so it seems less threatening and he could objectively agree it was a good idea for the future. Then I would bring the future closer and eventually say ‘shall we try it?’

So I would say things like ‘I know you feel you don’t need support to fill the weekly pill boxes for you and mum now but, at some point you might. When you reach that stage we can just ask the pharmacy to issue dosette boxes and then you won’t need to worry any more about making sure mum’s meds are put out right. Taking medications properly is really important which is why the service exists.’ Then next time I needed to order prescriptions I asked if he wanted to try the dosette boxes. The second time I asked he said yes.

@funnelfan said “It’s very frustrating when they admit they can’t cope but won’t agree to any help or make any suggestions of their own on how to improve matters.”

This is so true, and one of the most difficult things I struggle with, with my MIL.
I try to approach issues in so many different ways, no support is accepted, then next day when we speak, she is asking me for help with the same issues. And so it goes on, no change. Which I would deal with , if I didn’t have to keep having the same conversations every single day, sometimes several times a phone call. And she has full capacity, cannot imagine how difficult it must be with cognitive decline.

@Warmwormyour parents sound a lot like mine in the last year of my dad’s life - he had heart failure and also got mixed dementia (vascular and Alzheimer’s) himself in the last year or two. But the big difference to your parents is that my dad doted on my mum for 60 years although even he would sometimes get frustrated with her. Mum should probably have been in a care home but dad wouldn’t have allowed it and so they managed in a sheltered housing community looking out for them plus 4 carer visits a day and a lot of help from me to spread the increasing care needed of mum.

As soon as dad died mum needed the care home. So, what would happen to your mum if something happened to your dad tomorrow - let’s say a hospital admission? It sounds like she couldn’t cope so would need emergency care and your dad is currently struggling to cope with her at home now and needs more support. You need to find the way to get them on social services radar soon - use whatever works for your dad ie tell him it’s a way to be able to apply for attendance allowance, in case dad gets sick and someone is needed to look after your mum. once he starts engaging with them he might find them less ‘official and scary’ than he expects.

@Warmworm you haven't got a choice.
You need to protect your mother.
Believe me, I understand how difficult this is.
It blew my family apart when it happened to us.

But the patient with dementia cannot advocate for herself.

@Warmworm that sounds a difficult situation. I agree with Broon on what the best solution sounds like but I understand your problem. Would your dad respond to a direct, blunt conversation about the situation? I think sometimes it’s far too easy to think there’s no way out and he may need to be told out loud that it’s ok if he can’t care for your mum any more, and that there are alternatives.

It’s very frustrating when they admit they can’t cope but won’t agree to any help or make any suggestions of their own on how to improve matters.

Thank you. I think I know this really.

I should also have said how he admits he’s at his wit’s end but has a huge distrust of any kind of “services”. Won’t even see the gp about what is clearly heart failure. Discharged himself from cardiac critical care after his heart attack. I’ve tried to persuade him to involve social services but he adamantly refuses.

I think I will ruin our relationship completely if I contact social services without his agreement. Also Mum will absolutely not want to go into a home so she’ll hate me as well. It’s awful.

Hello @Warmworm

My uncle became very abusive to my aunt when she got dementia. He was controlling and unkind and she started to be frightened of him. It was a dreadful situation and she had to be removed for her own safety. I think he'd always had this tendency towards her but once she got dementia it was magnified.
He seemed to believe that she was pretending not to know how to get dressed or washed etc. And everything she did annoyed him.

Your mother needs a safeguarding referral to social services. You're describing carer burnout, essentially (on your dad's part, I mean). Also, their relationship breakdown makes your mum vulnerable.

It sounds like she would be better off now in a care home. Your dad is entitled to stay in the house if she goes into a home, however.

But you do need a social services referral.

Hi, I’m hoping for some advice from you guys. Mum has dementia, she’s probably approaching moderate dementia. She has other health problems but is pretty mobile. She lives with Dad who has his own health problems (bad heart) and isn’t very mobile, he rarely leaves the house. Their relationship has completely broken down, they basically can’t stand one another. Mum is stubborn and has lost all common sense and he’s constantly trying to stop her doing dangerous or daft things, but he does it angrily, not kindly. I know he’s at the end of his tether. Recently he grabbed her arm to stop her doing something and bruised her. I know they need to be separated but how? Mum can’t shop/plan/cook/do any finances at all/deal with any mail/take or organise meds/or even use a Tv or phone without his help. I don’t know if she is at the care home stage yet. It seems social workers want to keep people at home even if they’re bed bound these days.

They own their home jointly but don’t have lots of savings. Dad has a small pension plus state pension and they manage ok financially but couldn’t afford to pay for care without selling the house, then where would Dad live?

There is a big link between diabetes, insulin resistance and dementia.

https://www.alzheimersresearchuk.org/dementia-information/dementia-risk/diabetes-and-dementia-risk/

When DAunt's dementia was progressing rapidly she was existing solely on vanilla ice cream and the occasional bit of milk chocolate until her swallowing became more impaired.

When I lost my smell for 9 months due to Covid and my taste for a while I could only really taste sour and sweet at first. As my smell returned my taste range increased. It was really strange not being able to taste the spice in curry sauces at all, they just tasted vaguely sour. It was hard to be interested in food when it tasted bland and smelt of nothing.

My stepfather doesn't like savoury things like sausages and burgers any more. Only sweet things. Taste and smell do change with some dementia.

Trundling on here in the madness. Visit to care home tonight included DM telling me that the man wearing a urine bag on his leg is wearing it because he’d been shot in the leg three times. They chased him all the way to the home shooting at him apparently. And that the letter on her NHS medical records, that I have access to through my own NHS app that says she had her hearing tested and needs hearing aids is ‘all lies’. She’s happy enough and I’m used to these mixed dementia ramblings but sometimes am hit with a stomach punch of grief and deep ache for the mother I’ve already lost. Knowing this could likely go on for another decade is a heavy feeling.

@GoldMoon @roundaboutthehillsareshining I can completely sympathise with you. One of the most unpleasant and difficult symptoms of DMs cognitive decline is her delusions/hallucinations, which usually involve her being totally convinced that 'they' are trying to get to her and will do her serious harm. Each time it happens, someone goes to 'rescue' her and she stays with family for a while. Currently she is with Brother and he is convinced that the delusions are 'just' anxiety so she will be fine with some medication and/or company. I know that Mum plays down/denies hallucinations etc that are not so frightening that she feels she needs 'rescuing' (eg. she'll sometimes call and tell me at the time but later claim she was 'joking' or that I misunderstood). We are awaiting the outcome of her formal assessment but she and B have done their best to down play these symptoms and make it appear that they never happen if she's got company so it's an anxiety issue and not a symptom of cognitive decline. I suspect that she does experience symptoms when she's with B but pretends not to.
Because DM's decline isn't the 'typical' (is there such a thing?) alzheimers journey of increasing memory problems, not knowing who people are etc, B refuses to believe that there is a real problem and won't even consider looking at proper paid care options (either for now, or to understand the options if/when things progress). They have told social services/GP etc that no help is needed as 'family will look after her'. I feel like we are currently in the calm before the storm, in that for now she seems OK on her own when B is at work and he/his DP seem reasonably happy to have her with them so there are no crises. But I know it's only a matter of time before either she starts to have frightening delusions in the day time and we will go back to daily calls to 'rescue' her, or B (or more likely, and understandably, his DP) decides he wants some space from her. I live several hours away, but when DM has had previous spates of calling to be 'saved' I have dropped everything to rush over as she is clearly terrified. Sometimes she believes she has fallen and needs medical attention. There is never so much as a bruise and she is someone who bruises incredibly easily so I am sure that this is confabulation but of course I never feel I can ignore this as it may be true. I don't know what I will do if/when this starts happening in the day time when B is not with her- I know he won't pick up the phone if he's at work and I don't like to think of her terrified but equally I don't feel I have the energy for another spate of cancelling work/not being their for my family/driving for hours every day.

Darn it !

Girding my loins for this afternoon’s visit to the care home. Started reading an email from them about respiratory illnesses and restrictions on visits and got a bit excited. Sadly it’s only rookiedog that gets the free pass and he quite likes going because of all the attention he gets.

@roundaboutthehillsareshining this issue with equating not obeying her wishes = betrayal is exactly what I have with DF. But at this stage of life, it's often much more about needs than wishes and wants, as well as the capacity of loved ones to care, support, manage.

Sounds very familiar . We've just had this . She was admitted to hospital and lied to the staff there that she not having it anymore so that they would release her , which they did with 4x carers visits a day for 6 weeks .
Once home refused all help , as wanted the family to step up .
Now mostly housebound , hardly ever getting dressed and not keeping herself clean & tidy .
Meanwhile whilst she has ' capacity ' ss not doing anything as she hasn't yet had her officially dementia test and it's likely months away before she gets her appointment .

Here we go again. ER (elderly relative) is back in hospital after pressing her panic button because she thought there were people out to get her (it's not really spoilers in this topic to say, nope no people, is it!) But of course now she's demanding we go and "rescue" her. I grey rock the whole thing - just repeat to her that it's not a decision I have any influence over then redirect to a different topic, but her closer family are taking it really hard. They have this thing that by not obeying her wishes, they're betraying her, but at the same time she has to be safe and she's got no insight into her condition.

It would almost be easier if she was properly away with the fairies and didn't know where she was. But her cognitive impairment doesn't appear to be progressing along those lines. I do know that we as a family can't do this again, that social services might want her to go home again, but it feels completely impractical...

For context this is the 5th admission in a delusional/psychotic state..... So not our first rodeo...

I think some HCPs are naive (possibly wilfully) about the impact of the practicalities of treatment.

Especially as people age, obtaining treatment isnt neutral and risk free.

If you are an otherwise fit and able person (as HCPs are), going to a hospital/clinic can be a slightly annoying distraction. A 2 hour wait is a chance to read a book, play on your phone. You dont miss your name being called.

If the person is elderly, declining physically and cognitively it becomes a huge undertaking perhaps involving family members, hospital transport, hoists, wheelchairs, long waits in extreme discomfort. Generally distressing to all concerned.

Family members may be declining treatment not to hasten decline but to slow it or at least manage it.

Like pp, I dropped taking mum for her macular degeneration tests and injections - not only was it a major military style operation to get her up, washed, dressed and out the door on time but her dementia meant she couldn’t recognise or articulate the letters on the sight charts anyway. The person who did that test wasn’t very patient or sympathetic with mum, which put me off, everyone else was lovely. Including the doctor who said that we could opt to just have the eye scan and he’d decide whether to inject or not based on those results. But the distress of the 6-weekly visits wasn’t worth the slight benefit of the treatment given she’d long stopped reading.

@Isitsticky I’m in general agreement that you really have to decide whether the treatment would improve or maintain your DM’s quality of life, balanced against the distress a trip to the hospital would cause. A few weeks ago mum had a fall and banged her head quite hard, and as she was on blood thinners the CH was minded to call for an ambulance but rang me to check. I said no because if she had developed a brain bleed she was so frail that there’s no way she’d be well enough for surgery, so she might as well stay where she was. Same when she had a “funny turn” recently. The CH are very understanding and supportive of our desire to keep mum out of hospital but I appreciate their policies say they have to check with family when something new happens.

@Isitsticky it sounds like as others have said, there might not be much benefit in putting DM through more medical treatment at this stage, if not strictly necessary. And if it has not prevented a break previously, it is unlikely to be sufficiently protective to warrant putting her through it.

DGM has stated she does not want to go to hospital again, but unfortunately it seems not that simple as the carers are duty bound to call 111 if she is unwell and it's beyond their capacity to support, and to call 999 in an emergency. It would then be down to DGM to refuse medical care when the ambulance arrives and if she isn't able to articulate her wishes or there is any doubt about capacity (eg oxygen deprivation) they'll take her in anyway.

Also, if she is too ill for the carers to attend to her so they refuse to come and family can't go straight away, as the soonest one of us can be there would be between 2-4hrs, there would be no safe alternative.

@Isitsticky just this last week I declined DM being taken to hospital to be put on a drip for something to do with her heart.

I figured that the distress DM would suffer being hauled out of bed to go and spend time in an ambulance then hospital corridor was more of a risk than staying in her comfortable CH bed.

My 93 year old mum has in her advance care plan that she is not for hospital. She used to have regular eye tests and injections into her eye for age related macular degeneration. We stopped these out patient appointments about 3 years ago as the loss of logic in her brain meant she was finding the treatment increasingly difficult. Now she doesn’t even wear her glasses.

An infusion sounds less invasive than an injection into your eye but the injection is 10 seconds of treatment. How long is the infusion? Does it require a cannula that she doesn’t touch? My mum’s GP struggled earlier this year to get a blood sample as she was ‘combative’.

it sounds like a lot of logistics and a distressing treatment for v little benefit.

@Isitsticky
I can see no benefit in disrupting your mum's life to have this treatment.

I believe that going to medical appointments at this stage is actually detrimental. They are disturbing to the patient, who deteriorate more quickly as a result.

Happy, positive experiences are what people with advanced dementia need. Not visits to hospital, alone, where they recognise nothing and nobody.

Following on from discussions of avance health directives for parents with dementia ... DM is 89, fairly advanced dementia, very poor quality of life. She is not for hospital or any invasive treatments etc. She has an infision every 2 years for osteoporosis and I'm wondering what to do about the next one when it comes. It would involve transporting her to a hospital an hour away, where there is no space for one of us to stay with her. She won't know what's going on and will get upset. Is it in her interests to have this treatment? Obviously a broken bone or hip would be extremely painful. But this treatment didn't prevent her breaking a hip a few years ago (before she was in a CH with walking frame). Any thoughts?

That's the thing, once your sense of smell goes then all you have is taste buds so no sublety.

My opinion is that once into dementia then just accept that nutrition goes out of the window.

@AInightingale it may be worth asking if your DM can be offered soft, easy eat, food.