Could do with some advice

Simon_

New member
Jul 20, 2023
6
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Hi there! Been reading various stories on here with a lot of interest lately and thought I'd sign up. So we are convinced that my father (73) has been slowly developing some form of dementia over the last few years, although it seemed to be mostly very sporadic moments of unusual behaviour and repetitive questioning until the last six months when things have gotten substantially worse.

Health Issues
What's making this more difficult is the fact he has various issues that he has neglected to see a Doctor about (which have only gotten worse) and he's also drinking very heavily now; many days he is drinking either a bottle of whisky or a large chunk of one and then a bottle wine (two if there's not much whisky). He's always enjoyed a drink, but always in moderation, and now suddenly in the last few months he's been drinking excessively. The other issues include some sort of ongoing long-term urinary issues (UTI likely, there's been some incontinence, very frequent bathroom trips that have to be taken suddenly) and arthritis and other significant joint/limb pains predominantly in the legs that my mum (former nurse) thinks may be gout, which the alcohol would be largely responsible for. He's very old-fashioned and does not like going to doctors; thinks the pain in his body can be relieved with alcohol, when it clearly can't. He is also on medication for high blood pressure, which I'm fairly certain shouldn't be surrounded by bouts of heavy drinking as they could lower it further.

Personality Changes
His personality has changed so much in this time. While he is usually more like his usual self in the mornings, he gets progressively worse as the day goes on, even moreso if he's been drinking. He's pretty miserable most of the time, rarely talks, is quick to get into a mood, lost all interest in things he used to do, often sits in the living room doing absolutely nothing for an hour or two, barring taking a drink from his glass. And yet when my niece comes over after school, he makes at least more of an effort, and when my sister comes in to collect her, he has to make even more of an effort with the "host mode". Exactly the same if we meet up with his sister at somewhere local when she travels down; it's like he's (somewhat) his old self in those couple of hours before we come home and the new personality resumes. It got to a point where we even found bottles of alcohol (from a neighbour's house that he has looked after), in his drinks cabinet; bringing her (presumably out of date, judging by the BBE 2018 Baileys....) old bottles here and consuming them; drinks that he wouldn't normally buy like Schnapps, Cointreau and the Baileys.

Dementia Symptoms
In terms of the Dementia symptoms, aside from the repetitive questioning (will often ask my niece something a few times in the space of half an hour, for example):
▪ Forgetfulness in general and poor short-term memory
▪ Increasingly poor judgement; I've had to save him getting scammed out of considerable amounts of money three times recently. He was literally going to get the driveway expensively renovated just because a car from a dodgy company parked up and had a chat with him about getting it done... No previous inclination about wanting such work done. And it happened again a few weeks later!...
▪ The sundowning/host-mode that I've mentioned. It's like Jekyll/Hyde..
▪ A fixation with closing blinds/curtains early. We noticed this during the Summer when they'd be closed when there was still an hour or two of daylight left, his reasoning being that he didn't like people looking in, even though it would be very difficult to see in from outside, so some elements of paranoia. It was quite common to see him sitting in the living room in these quite dark conditions, doing essentially nothing at all, other than sitting there.
▪ Obsessions, particularly with buying things. There's a garage fridge with lots of orange juice, much of which has long past its best, and it's still occasionally topped up with more. This applies to a lot of food/drink tbh. But aside from that, he's been buying his granddaughter a LOT of clothes, frequently several hundred pounds worth. Given she's at an age where she's still growing, it's unlikely she'll even get much use out of them, particularly with being at school during the week. He even said "that was it" to her the other week when she was going through the latest collection (referring to them being part of her Christmas presents) and yet he's made more orders since then. Done the same thing with backpacks for school, even though she already has one she loves, and won't get to use them. It's like he sees a reduced sticker or a special promotion on and is compelled to buy something. I had to negotiate with Sky on his behalf to ensure he'd keep his TV/internet package as "it was costing too much" and he's forever complained about the various monthly bills/costs and yet now he's blowing so much more money on the drinking, the gifts, wasted food/drink etc.
▪ Depression/moods. He's always had moods, but they dominate most of his days now, certainly at home.
▪ He's fixated on money. When he's been drinking heavily, he will often go on about how he paid for things, paid the mortgage or whatever. But he opened a savings account for his granddaughter and makes a habit of telling her (extensively) when he's put money in, which seems a little inappropriate. Constantly bringing up how much something cost, or "joking" that he needs payment for something he's bought, drives us nuts. He's signed up to numerous charities, it's almost like he's determined to prove he's a good person that is helping others, to his own detriment. Ironically when things like a light bulb go out now or something breaks, he does nothing about it, so it's up to us to sort it out.
▪ Occasionally finding doors unlocked if he's gone out, or in the case of the other day, he locked the back door, even though he knew I was outside tidying up the garden/garage. On some of the occasions he's left the door open, he's actually "locked" the door, but not into the actual frame, so it was basically slightly ajar. It's still infrequent at this stage thankfully, but the fact it's happening is alarming.
▪ Loss of appetite/noticeable weight loss. Sometimes he doesn't have any lunch or tea, other times it's just a microwave burger or some soup, perhaps a sandwich. Only seems to deal with very basic meals now. In fact, his tea tonight was two corn cobs. Literally just that. He put out some dessert to eat after, but decided to have a banana and forgot about the dessert he'd left out...
▪ Poor personal hygiene; not sure he's even having baths now; is instead standing up in the bathroom at the sink and cleaning himself that way, often leaving a lot of wet patches on the floor. Although he does shave. Also wearing the same clothes for a week or two at least, despite the fact he's been buying the occasional new item of clothing when we go out on Sundays.
▪ Several instances where he's been asked what he wanted for tea, and he'd give a moody, "absolutely nothing at all" response, then when the food was ready, he'd ask where his was, completely oblivious. Other times he's gotten a meal out, said he wanted that, then proceeded to just open a tin of soup or such like and have that instead.
▪ The other night it was pouring down with rain and he decided he *had* to put a small amount of paper rubbish in the recycling bin outside, which he proceeded to do in just socks; no shoes or anything, so he came back into the house with very wet feet. Could have easily left it until the next morning, but no...
▪ Seems to lose track of the time/date quite easily. Constantly looking at the calendar, getting mixed up over things like when niece stays overnight. Forever writing in his diary and looking things up in it.
▪ Frequently misplacing things, and generally leaving a lot of clutter. Likes to hoard. Has left the TV/Sky remote controls in very odd places when he goes to bed (often when he's been particularly moody and had drinks); in the bin by his chair, under the chair, in a shoe, in a tissue box... Almost like he doesn't want my mum to be able to watch some TV when he goes up to bed (she sleeps downstairs on the sofa due to health issues). We pretty much have to see humour in the situation now; where has he put the remotes tonight?..:rolleyes:
▪ Resorted to having the TV on more loudly lately. Thankfully not always and when he does, it's merely been 'quite loud', but sometimes it's far too high. I even helped buy him some Bluetooth Headphones last year for watching stuff, but those don't seem to get any usage now, even though they're right next to the TV on a stand and fairly plug-and-play.
▪ An incident the other month where he was convinced that we had some old knackered tyres taking up space in the garage and he was going to ask my sister to put them on ebay?. We were adamant there were no tyres in the garage (why would we keep old worn ones? They'd be disposed of by the tyre fitters...), and yet he was even more convinced they were in there, telling us he'd show where they were. Eventually discovered the cylindrical barbecue still in its wrapping, which presumably he thought was tyres, but he could have easily felt the thing (and it's much smaller than car tyres) and known it wasn't tyres..


I wrote to his GP outlining my concerns a couple of months back and heard nothing. Likewise my mum sent them a letter more recently after the 111 incident and also heard nothing back. To be fair, it has been ranked the worst surgery in our area out of the 20 operating in the region, so maybe I shouldn't be surprised, but it's incredibly frustrating.

I feel like the drinking in particular has thrown a massive spanner in the works. He can be VERY spiteful towards my mum, has said some very unpleasant things to her (won't say much/anything if I'm in the room, I've had to eavesdrop on some occasions) while in his drunken states, and it's making me quite angry, as she's only ever been nice to him, to everyone really. Sometimes she's been sat doing a puzzle or something and he's whinged at her for not watching him writhe about in pain from his arthritis/joint issues instead, even though she's said countless times to see his GP about it. It's difficult to know how much is down to the dementia and how much is the drink. Then there's the question of why he's drinking, as he doesn't like to talk about it and doesn't seem to think he has a problem. We're not sure if he's drinking because he's noticed changes in himself that he can't understand. We had to call 111 the other month after he had a fall in the driveway after he'd been sat outside drinking, ended up with cuts on his face etc. Unfortunately not very much came of that, which was also disappointing as we were under the impression his GP would had to have been notified.

My mum is planning to visit the local AgeUK for some advice, and I know there is an Alzheimer's chat line which she may want to use. We've been keeping in regular contact with his sister, and I've been mentioning a lot of this to my sister too, but it feels like only myself and my mum really understand just how serious this is, despite the fact we've been pretty thorough in telling them the various things that have happened. He's very clearly suffering from depression of some kind, and it seems to just drag the overall mood down around the house. Now I've had my fair share of issues in the past myself, and I'm obviously not enjoying living in this environment, so it does 'get me down' to some extent but I am looking after myself, eating fine and I've done a lot of running for years so that helps, even if I do end up thinking about the whole predicament for the bulk of the trip out lol. My mum also insists she's fine, and I do tell her she can always talk to me at any time about it. Still, I am concerned about her and I try and keep her company as much as possible, but I'm sure this is also going to be negatively impacting her, and I really want that to stop. It's just so difficult as he doesn't like talking about issues he's having, and frequently shuts us out.

if anyone has any useful suggestions of things to do, I'm all ears. Like I say, he HATES going to Doctors, so it really is a struggle getting him to address health problems, and the cognitive/memory issues means he's forgetting new discussions fairly often. I also question whether he'd do anything about the drinking; he is not the type of person to go to counselling/therapy, AA meetings or anything like that, so I really don't know how to address that issue, particularly as it's causing so many problems, but I know it can't be ignored. There's undoubtedly all sorts of medications that could be prescribed for these problems he's suffering with, and yet the drinking is going to be a major issue there. The fact my niece comes over after school hasn't deterred him from drinking; often has a tumbler of whisky or a glass full of wine while she's here, and she's smart/aware that he drinks often, so naturally I don't want her to think this is normal, but as it's his house (as he likes to point out, although under both parents' names afaik) he's unlikely to listen to his behaviour being called out. I just know it can't keep going on like this, and it's so frustrating that he won't accept other people trying to help him. I'd be interested to know what sort of options are available with regards to ensuring these things get looked at, even if he is adamant he doesn't want to? Obviously under normal circumstances you can't make someone go to their GP about their problems.. But surely if they're presenting a potential danger/risk to themselves or to others (fortunately he's only been nasty -verbally- to my mum to this point, but my concern is if it goes beyond that), then there must be options? I know Social Services are mentioned often on here, but it's how you'd get that initial assessment to confirm these concerns, particularly the dementia stuff, but also the drinking. He can do the host-mode routine for a couple of hours if he wants to, which is my concern with anyone coming to visit him to make any sort of assessment and thinking he's alright. I think the one plus point is he doesn't ask to drive now; we've kept the keys away from him and he hasn't asked for them lately, so that's one less concern.

Really sorry again for the absurdly long post, hadn't intended to write so much😴 Thanks if you've made it this far..😉
 
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canary

Registered User
Feb 25, 2014
25,464
0
South coast
Hello @Simon_ and welcome to the forum

Obviously we cannot diagnose dementia on this forum - it requires cognitive tests, scans and a doctor to interpret them, but what you have described sounds like a text book of dementia symptoms. Everything there, from the "putting things away safely" in weird places, through poor decisions with money, to the nastiness directed at the main carer is typical dementia. You are right about him seeing a reduced sticker and feeling compelled to buy it - sellers, advertisers, charities and scammers know how best to get people to part with their money and people with dementia are much more susceptible to this.

The drinking is probably an attempt to self medicate (especially as it is a recent thing) and he is probably unaware of how much he is actually drinking as he is forgetting and in his mind is just having "one glass". Dementia causes them huge anxiety and depression because they are aware that Something is wrong, but do not understand what is happening and are unaware that this Something is actually them (hence refusing to see the doctor). They are unable to understand that they have changed and blame the people around them, or where they are living.

Who is buying the booze? Is he able to buy it himself or is he coercing your mum to buy it for him? Could someone buy low/non alcoholic stuff and surreptitiously refill the empties?

Keep on at the GP. Eventually there will be an emergency and doctors/hospitals will have to be involved
 

NickP

Registered User
Feb 23, 2021
126
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Hello @Simon as Canary said, do keep on at the GP - maybe asking for a phone call? Also calling Social Care and mentioning that your parents are 'not safe' usually triggers a response. I know what you mean about the 'show' he can put on to visitors - my dad was like that in the early days, but print out your description of how things are (what you wrote above) & pass it to them in an envelope, will also help them to get a clearer picture.
My dad always enjoyed a glass if wine or two - but when the Alzheimer's really started to show his drinking increased enormously and he could easily drink 1-2 bottles an evening. This obviously further affected his behaviour. He got angry if my mum tried to limit it or suggest he'd had enough. Eventually she started buying only non alcholic wine & gin, and didn't tell him. Thankfully he was already at the stage where he had forgotten his previous knowledge of wines etc.
To this day, a lot further along the dementia pathway, he enjoys a glass of (his) wine most evenings.
I really hope you don't reach the emergency point but in some situations, sadly it's the only way to move things forward.
 

Simon_

New member
Jul 20, 2023
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Thank you Canary and Nick for your responses

He's buying the alcohol himself; has been trying to "hide" it from us, but I don't think he realised how obvious it was to us that he was drinking all these spirits/wine. Even with all his issues, I suspect he'd notice any switching to the low/non-variants, but will keep it in mind. I think the sheer volume is the problem though. I did read of some stories where the (heavy) drinking does lessen somewhat, hoping that is the case here.

Will keep on at the GP, I guess it's a similar story at a lot of surgeries, but it's difficult even getting through on the phone to them, regardless of the time of day, that's why we sent letters and left contact details. Think we're going to speak with one or two organisations and see what they say as well. He does seem to take more notice of what his sister says, so might have to get her more involved in trying to persuade him.
 

Andbreathe

Registered User
Dec 17, 2021
145
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Uk
I sneakily water down the whisky in my dad's bottle when he isn't looking. I have tried and failed many times to get him to reduce his drinking. I think even a fairly modest amount now impacts him significantly, probably due to his medication. Wishing you luck with your father.
 

Simon_

New member
Jul 20, 2023
6
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Appreciate the responses. To update the situation:

Got him to see a doctor late November, and we accompanied him to follow-up with dr shortly after. Initial blood tests ok, but had further ones done, though not heard results on those. Dr did memory tests with him in 1st appointment and was apparently happy that nothing problematic (mum/I disagree). Had concerns with his gait and a tremor, so said she'd refer him to Neurology, rule out things like Parkinson's too. Alcohol issue was mentioned and he said in his own words he'd "cut it all out for good". Obviously would need to gradually wean him off, but as I personally thought he might be drinking because of fear of what might be wrong with him prior to seeing dr (rather than an alcohol addiction per se), we agreed to let him handle his drinking. Dr thinks cognitive issues down to B12 deficiency and started him on injections.

Personally I don't think that would be responsible for so many wholesale changes over the last 12-18 months. Mum had the same thing and that only affected her with some physical stuff, not dramatic personality changes or memory impairment. Appreciate different people will be affected in different ways, but mum/I think this has been developing for at least 4+ years now. Without going into too many details, back then we had unexpected visits from the police (Some time apart) relating to very bizarre, very out-of-character things he had done. In hindsight, very much things someone with dementia or similar would do, but he was fairly normal 95% of the time, so we never suspected anything along those lines; unlike now when he's doing unusual things on a daily basis.

So now it's been a few months since those meetings with dr, and we finally have another follow-up booked. This was meant to be end of last year, but the surgery is inept and we've spent the last 6 weeks trying to get it sorted. We specifically told them to contact mum/I for any appointment, but they sent dad the details, and he chose not to tell us. We only found out because we went in again this week to finally get the matter resolved, and were told that they'd contacted dad... Related to this, the dr was going to do that neurology referral? We've been waiting months for an update to that, but my mum recently found a letter from the end of november (day after we all met dr) saying dad would receive an appointment from neurology shortly. Presumably he was contacted early December, but he's not said a thing in all that time. Only by chance mum saw that letter. So we've no idea if he ignored Neurology or not, as he thinks he's "fine". We'll be querying this at next meeting. He simply can't be going to appointments alone now.

The alcohol is a huge problem still. Watering it down isn't going to work, I suspect he won't go to any AA-type stuff so not sure if there are any other options other than waiting for it to suddenly, dramatically impact his health? Hasn't been physically threatening so far, but knowing his mood/foul tempers, not ruling out it ever happening, so I spend much more time in the evenings with them both, which isn't much fun.. Wasting so much money on expensive wines/spirits, yet forever moaning about money and whinging about paying for things. He's always had this thing about money, but he's fixated on it these days ("I paid for X or Y! I pay the electricity! I paid the mortgage"), acting as though the house is entirely his to do with as he pleases, even though he's been married for 45+ years, mum paid the deposit on the house and mum/I are the ones doing the cooking/cleaning/maintenance.

Incontinence is becoming a problem. Not frequently so far, but several instances of it now. The other week he got up from the table after tea and I could see the back of his trousers were soaked. He was completely oblivious and went to sit on the sofa to watch TV as if nothing had happened... Mum made him go to the bathroom and he then went to bed, while mum ended up cleaning his mess. Shocked us both. She's bought incontinence pads and pants, but he is practically refusing to wear the pants. That's a real concern, as for whatever reason he doesn't wear underpants at all now, which is honestly quite disgusting. Mum also shouldn't have to be cleaning up when it can be mitigated to a large extent. Is this apparent dislike of underpants a common thing? Never used to be an issue and he's got plenty of underwear, just doesn't get worn now... We suspect he has an enlarged prostate and possible UTI; he's frequently going to the toilet, often up to 3 times an hour. He's definitely had issues with urinating, as it goes back to one of those bizarre police incidents where he was going to the toilet in the garden... In any case, there are often little puddles/signs of "liquid" around the toilet, and the rim of the toilet almost always has "hit marks", so this needs to be resolved. It gets even worse though; it seems like he's not even washing his hands now. Not sure how long this has been going on, but I noticed he came out of the bathroom almost straight after hearing the toilet flush the other day, and his soap is almost always completely dry. Can't believe it. How do you even correct/restore something that's ingrained into you since you're little? Such a fundamentically basic part of hygiene... This will obviously be brought up at the meeting.

Other main issue is his spending. Prior to Xmas, he bought his granddaughter a LOT of new clothes; hundreds of £££s, on top of the usual xmas presents. I doubt she'll get to wear much of it when she's at school all week, is such a waste. He sees a sale or discounted price/offer and assumes he MUST buy it... Interestingly he bought my sister designer bags for her bday late last year and a very generous gift voucher for christmas (on top of clothes etc.) and yet he spent only a small fraction of that for my recent 40th and Xmas. Not that I care what people spend, but it makes me wonder if my efforts to assist mum have led him to hold a "grudge" against me now... Barely talks to me unless niece is here, then I'll get mentioned in the third person. Unless he needs help with something, then he might briefly talk to me. His judgement/common sense is frequently lacking; case in point he got scammed for some rubbish portable heaters from the USA costing a few hundred quid, that I actually saw in a discount shop here for like £15... Obviously he wastes a lot of money on alcohol, but also food shopping. He just can't help himself when he sees a special offer or clubcard price, he simply must buy it. Does bits of food shopping almost daily when he goes on the bus, buying ready meals and lots of stuff to go in the freezer, even though there's barely any room. Then when it comes to evening mealtime, he never knows what he wants/has and he clearly forgets what he has, as he just buys more and more stuff when he next goes out. So much of it ends up going out of date. Despite the fact mum/I don't eat trifles (esp. in winter), he keeps buying them, and yet when mum offers him some of it, he almost never wants any... Clearly his shopping lists need to be monitored, but that still won't stop him buying stuff when he sees it in the shop. Likewise we can't be going to supermarkets every weekday just to supervise his purchases. He always used to be able to handle doing his own food arrangements in the kitchen, but nowadays if he makes anything it'll be a sandwich, soup or a microwave burger (don't get me started on the mountain of those in the fridges). Otherwise mum/I will be the ones doing anything remotely elaborate.

I've tried tidying/organising the kitchen fridge several times as he turns it into a complete jam-packed mess. I made all his things easy to see, nothing hidden away, but it doesn't last, and he still leaves much of it to expire. He does eat/drink things, but not as much as he's buying. Don't know if there are any recommendations some of you might have regarding the fridge situation to improve matters. Likewise, I don't know how we're going to get him into the habit of washing his hands again, when he forgets things he's told so quickly.

Is it going to be impossible requesting an MRI scan done at this stage? Does he need to visit a memory clinic before that will be contemplated? I'm already concerned that a B12 deficiency would typically need 9-12 months of monitoring, and I don't think we should be waiting that long when he's already gotten much worse in the last year. We're also going to be moving into lighter evenings soon, which based on last year, typically means him sitting outside in the garden looking miserable with his alcohol, often falling asleep and refusing to come in. Should we just be pushing for the memory clinic (and hoping he can't fool that), or is there anything I've said that may get a scan done more urgently?

I know LPOA will be suggested, and we do want to get that sorted, but I'm not sure how amicable he's going to be to that these days, especially with how much we've fought him to get him to seek medical help to this point. Anyway. thanks for reading :) And I welcome any suggestions for anything else we should bring up or ask the doctor at the next meeting.
 
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canary

Registered User
Feb 25, 2014
25,464
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South coast
Oh my goodness! So many red flags here!!!

If you havent already done this
1 - start keeping a journal of all the odd/concerning things that he is doing
2 - send a bullet-pointed letter to the GP itemising all these concerns, or print off your last post and send it in

A lot of things you have mentioned are especially common with frontal lobe dementias (food/drink obsessions - especially alcohol; impulse buying - especially of things they already have; inappropriate urination - often outside; difficulty with judgement, organising and planning things) and often if dementia starts in the frontal lobes there is relative sparing of the short-term memory and they can do well on the basic memory test done at the GP.

Other things you mention - incontinence, forgetting to wash hands, losing cooking (and other) skills, not dressing appropriately and all the myriad of other things are typical of all types of dementia

Unfortunately, if they do well on the basic memory test, GPs are often very reluctant to refer to the memory clinic. Unfortunately, we are in this situation with OH and I dont know what else to suggest.
 

Ln1

New member
Feb 15, 2024
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hiya. I’m so sorry for the challenges you guys are facing.

You definitely need to get your sister more involved in your dad’s day to day care.
She can only get it by first hand experience.

My brother is the same. He is a brill person who will try his best to get it…. But he’s more practical as in give him a job. Fix mum’s boiler or sort her sticking door etc…. Sitting having a brew & talking to her for half an hour he finds hard.

The poor decision making is soooo bloody frustrating! Which is why we all need a break now & then.

Can you get your sister to dad sit for a night or two? So she can see!

On the drinking (and forgetting he’s drunk it) can you change the battle.

My mum gets all stubborn & angry if she thinks she’s being treated like a child.
The way we’ve manage to sort that (bear in mind she’s more of a social drinker than an at home like a glass of wine home alone kind and right now she still trusts us so this is just an idea, you will know if it would work or not & you may have already tried it)

The past couple of years we’ve encouraged her to have water with her wine. We’ve used the idea that she’s less likely to have a fall when she has water with it, she can have a brilliant afternoon/evening because she can have more wine if she has water in it!

We also sometimes if she’s not putting the water in will suggest non alcoholic for the next bottle. If she thinks everyone is having the same it’s no issue. We’re all doing it so we don’t fall over & hurt ourselves. She’s happy with that & it also helps me… because I’m the social binge drinker. I take after my mum that way. Which is why she’s not twigged on to the main reason we’re doing that.

Can you ask your dad if he fancies a beer then swap every other one you bring him for non alcoholic? This would only have a chance of working if you can get him to have his beer in a glass. He’d see the non alcoholic label in a bottle.

Normally I’d say have a conversation with the person & get them to choose to do the right thing…. This only works when the person still trusts you & isn’t accusing you of all sorts. It’s bloody annoying that you have to resort to the sneakiness they accuse you of just to keep them safe & well. I’m so dreading getting to that stage with mum.
Though we do top up her water if she’s forgotten to do it. And we don’t always say to her we have done. We just do it so I guess we’re pretty much there ourselves.

That’s enough of that depressing thought.

I hope you can get your sister more on board with your dad. Because you need the support. Good luck xo
 

Simon_

New member
Jul 20, 2023
6
0
@canary

Yep, mum has been keeping a diary of his behaviour, any notable events and the amount he's drinking on a daily basis since last Summer, pretty much filled the first one and had to buy another 😂 Shocked me some of the things I missed when I wasn't in the room.

We've written so many detailed letters to the GP since August. It took 3 or 4 of them, the last of which threatened involving Safeguarding before we finally got him his own appointment with the Dr as well as a follow-up for all of us, which we had at the end of November. Mum has written several herself recently in order to get this latest meeting booked, but I think we'll have to go back to me typing them up for any future ones, just so we've got a record on our end. Unfortunately our practice is terrible, and they don't seem to get into action unless there's the threat of another organisation investigating them.

Thank you for providing those extra bits of information, you always seem to be going out of your way to reply to a lot of people on here from the various threads I've read, so I appreciate it. I know these things still have to be diagnosed officially, but it helps to have at least some idea of what particular variants are the most likely ones.

Sorry to hear you're in a similar situation with your OH. So do you not have an "official" Dementia diagnosis then? I mean I understand that having the diagnosis doesn't suddenly make everything right again, but it does make it easier to get assistance/financial support, and if nothing else, it'd be nice to get rid of some of that uncertainty surrounding the changes we've all witnessed in dad. Unfortunately I fear that things like the group activities for dementia-sufferers (or similar groups that the dr suggested at the last meeting) would be wasted on him as he's so anti-social now. While I know these changes are not his fault, I've also read many times that dementia can amplify traits that someone has always had, and that certainly seems to be the case with him; instead of a 60/40 split of good/bad moods, it's now a 10/90 split... If he hasn't taken a bus into town to have a coffee/buy more alcohol, he's sat in the living room looking into space/the clock for hours on end, or the same tv shows/movies, barely interacting with anyone, argumentative and generally just an awkward, unpleasant environment... It's why I spend more time keeping mum company just so she doesn't have to suffer by herself. And then any excuse to go out for a coffee, and we're off to one of the many places so she can get away from that for a short while at least 😂 Although to be fair to her, she's tougher than she looks and managed several nursing homes for decades, so she's very familiar with dad's behaviour and how to deal with it to some extent.



@Ln1

It's funny, when my sister turns up to collect her daughter from us (we pick her up from school/look after her for a couple of hours), dad suddenly becomes more chatty and acting like he's his "old self" (although still displays confusion over certain things), then once she leaves, it's back to the usual routine.

Thanks for the suggestions with the drinking. I guess we'll see how things turn out when this particular matter is brought up at the next meeting with the dr, as it's going to be a much more central part of discussions, but he is simply too selfish/stubborn to think about swapping drinks. I honestly don't even know how "addicted" he is to alcohol at this point, as he can clearly go some days without anything, but then you see him go through a couple of bottles of wine in one night, very frequently. He simply refuses to listen to any of our advice/suggestions. It sounds like your mum is thankfully a bit more reasonable. Dad unfortunately has always had this controlling nature to him; he is always right, no one is to dispute him, and as it's "his house" (clearly doesn't understand how marriage and a partnership works, particularly when mum paid the deposit) that he can do as he wants. But mum/I have had to be much more firm with him, and this will have to continue further, but we need to see where things go when we next speak to the dr as we've been holding back on some issues pending a talk with the dr. Easier said than done, but I feel like this whole situation would be much more tolerable without the alcohol involved. He's also trying to hide the bottles much more now; only making them visible once he intends to start drinking. Almost magic how they appear out of thin air each new day... :rolleyes:

Getting kinda late, and I'm probably waffling. Thank you both again for your responses, really appreciate it.
 
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canary

Registered User
Feb 25, 2014
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South coast
when my sister turns up to collect her daughter from us (we pick her up from school/look after her for a couple of hours), dad suddenly becomes more chatty and acting like he's his "old self" (although still displays confusion over certain things), then once she leaves, it's back to the usual routine.
This phenomenon is seen by every carer of someone with dementia - it is known on here as "Host mode" and in other places as "Showtiming". People with dementia have this ability to mask their dementia symptoms, but it takes a lot of effort and they can only do it for short periods, so they only use it when seeing family members who they dont see that often, medical staff and other authority figures. Then, as soon as they are gone it all reverts and the person is left tired, super confused and irritable, the person visiting thinks you are exaggerating and you are left picking up the pieces (sigh)
 

canary

Registered User
Feb 25, 2014
25,464
0
South coast
Sorry to hear you're in a similar situation with your OH. So do you not have an "official" Dementia diagnosis then?
Not for OH, no. He has all the symptoms of FTD though. Its complicated.
I joined this forum when mum was diagnosed with Alzheimers, though.
 

Cioli

New member
Feb 24, 2024
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Sorry to hear everything your Dad is going through. I'm sure it is very hard for you.
The drinking thing is scary. While it is a separate issue that amount can destroy the liver and kidneys pretty quick and have all kinds of complications. I'm in recovery and have been clean and sober a while but I go to meetings a lot. Unlikely he would do that. I'm sure it is the only time he feels good, by not feeling anything. I hope things go as easy as they can. I don't know if they have Alanon where you are but it is support for people close to someone with an issue. It really helps. Good Luck
 

maisiecat

Registered User
Oct 12, 2023
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I'm not an expert on this but I believe that an alcohol induced type of dementia is the one that can improve if drinking stops.
 

Simon_

New member
Jul 20, 2023
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This phenomenon is seen by every carer of someone with dementia - it is known on here as "Host mode" and in other places as "Showtiming". People with dementia have this ability to mask their dementia symptoms, but it takes a lot of effort and they can only do it for short periods, so they only use it when seeing family members who they dont see that often, medical staff and other authority figures. Then, as soon as they are gone it all reverts and the person is left tired, super confused and irritable, the person visiting thinks you are exaggerating and you are left picking up the pieces (sigh)
Oh yes, we've had a lot of experience of the host mode since the summer. It's as though he's a totally different person around strangers (especially) or when sister comes round. Saying that, she was over at the weekend and he had a silly outburst/whinge at mum that she witnessed, so he's slipping, so to speak. Sorry to hear you've had two close members of family go through all of this, can't imagine how much you've gone through. Fingers crossed you're having an okay time of things (as much as they can be in these circumstances..)

Sorry to hear everything your Dad is going through. I'm sure it is very hard for you.
The drinking thing is scary. While it is a separate issue that amount can destroy the liver and kidneys pretty quick and have all kinds of complications. I'm in recovery and have been clean and sober a while but I go to meetings a lot. Unlikely he would do that. I'm sure it is the only time he feels good, by not feeling anything. I hope things go as easy as they can. I don't know if they have Alanon where you are but it is support for people close to someone with an issue. It really helps. Good Luck
Thank you, I appreciate it. Good to hear that you've managed to overcome the drink; it sounds like you've been much more open about facing the problem and fixing it, whereas dad has pretty much denied it's ever been an issue, and continues to. As you say, zero chance he'll go to meetings with others, so I imagine this is going to get worse before it gets better, which doesn't exactly thrill me, given how bad he is now. As I mention further down, we have potentially got something to go on for the drinking, just have to see if it works, thanks for the info, ill see if we have got that, as another option.
I'm not an expert on this but I believe that an alcohol induced type of dementia is the one that can improve if drinking stops.
Yes I read about that one, and it has crossed my mind. I think at this point we're still trying to work out *if* the alcohol is the root problem all of these things, or the cognitive decline is fuelling the drinking. On one hand, we've noticed very odd/weird behaviour several years before he started drinking heavily, but then alcohol is something he's enjoyed casually for as long as I can remember, so perhaps it's just been building up.
 

Simon_

New member
Jul 20, 2023
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So we went to the doctor today for a meeting. The dr can at least recognise the drinking is a serious problem we're facing with him and he's got a referral to a team that deal with drinking. I'm not sure exactly what it entails;, whether someone comes over and gives him advice on how to slowly come off the drink, does checks every couple of weeks or something, but I'm guessing it'll be along those lines? Dad was telling some fibs in terms of how much of his drinking was from spirits, but mum keeps a detailed diary of his behaviour and how much he drinks, plus she had seen a receipt for £70+ of spirits which she recalled to the dr, which I don't think he had realised.

Unfortunately the Neurology referral that we were in the dark about (dad got a letter end of November that he didn't tell us about) has not been deemed urgent based on what the dr has provided to that department, so the wait is going to be longer for that to be looked at...

Dr still thinks his memory is fine, but mum and I were wondering after if the dr might just be focusing on the alcohol for now, to rule out whether it's responsible for all these other issues, or at least a significant contributing factor? As long as the drinking is a problem, I guess it will be difficult to make a firm assessment, and as it's such a large problem (relative to the odd/unusual things he does that are usually harmless in comparison), it's a priority that needs to be addressed first.

I think I mentioned the excruciating leg/back pains he has had for years now; the ones that leave him cursing, sometimes even crying and occasionally thumping the sofa arm. And those happen frequently in the evenings, so they're not a rare occurence. Well, when that was brought up today, he told the dr that they were "an occasional twinge in the back", as though it's a mild little split-second of pain.... :rolleyes: Ridiculous. I could understand he was apprehensive about having things like that checked, in case they found something much more serious, but all his various blood tests, liver function etc. have all come back fine so far (to my own surprise). Maybe it ties into the impaired judgement, because I think most of us, if we were in such extreme pain, we'd want it looked at asap.

His attitude since we came back from the dr has been awful. We're pretty much used to the anti-social demeanour of not talking to any of us (only chirped up briefly when niece came over after school, who incidentally my mum said he started calling by her mum's name a few times, which i've noticed him do myself occasionally), but as I went to clear the table of plates after we'd eaten, he snapped, "No, I can do that, need to show I can do things".... Apparently he'd been drinking some wine while we picked up niece. Not much can really do about that in light of the situation, but he made another sarcastic remark relating to the food beforehand and he's not said anything for the rest of the night. Actually just went to bed, taking his diary etc. with him (maybe he thinks we look through it? We don't, we only notice what he leaves out in the open) and came out with this ridiculous comment that the lights had to be off by 11pm! As he pays for the electricity! Couldn't believe it 😂 And yet he thinks nothing of spending £50-60+ a week on alcohol. Oh and when I came back from my run, I heard this noise in the kitchen that sounded like running water, and yep, he'd left the tap slightly on for enough time to fill a container.

Still very much getting muddled on a lot of things, and given some of the very, very odd things we witnessed a few years back, I don't think the drink is entirely responsible.

To say the atmosphere is 'toxic' is an understatement. Although I'm sure others have had it much worse, but the way he doesn't really interact and is almost always in a negative/bad mood most of the day, 7 days a week, not a good place to be.

Thanks again to everyone on here :)
 
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