I had to do with alcohol addicts years ago. What you say is right.
It is the effect of alcohol on their minds they seek in alcoholic drinks, more than the taste on their taste buds
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Pulling everything together
- Thread starter Grahamstown
- Start date
It is the effect of alcohol on their minds they seek in alcoholic drinks, more than the taste on their taste buds
Good morning 
early I know.
My husband has early onset AZ and is so similar to yours.
During the day he is quite good and appears to be alert and switched on . Struggles with a few things but not too bad.
Evenings and nights are a totally different matter. Very slow, trouble with finding the right words, not sleeping much and a little confusion . Indeed sundowning .
early I know.My husband has early onset AZ and is so similar to yours.
During the day he is quite good and appears to be alert and switched on . Struggles with a few things but not too bad.
Evenings and nights are a totally different matter. Very slow, trouble with finding the right words, not sleeping much and a little confusion . Indeed sundowning .
How right you are! He has lost a lot of his sense of taste and smell and says quite candidly that ‘it makes him feel good’, but to get that feeling takes more than one drink now. I am managing to control it most of the time but he lives for the next drink, small though it is. He is a very sweet and gentle man so I feel very much for your sense of isolation and struggle. That is the hard bit for me, knowing that I have this battle every single evening until he subsides and goes to bed. Even then he is up and down the stairs to say goodnight two or three times, interrupting what I am doing so that I have to rewind or reread or re-listen several times. It is wearing and wearying. A complete change from even 9 months ago. I knew something was not right but it was minor.
Yes, I know that constant checking and monitoring of OH. It is so wearing - you feel like you are living your life and his too.
Im guessing that he is using the alcohol to self-medicate his anxiety when sundowning - hence wanting that lovely woozy feeling -, but that doesnt help you much.
Life with dementia just seems to be constant battles, with the PWD to get them to do things they dont want to do or stop them doing things they want to do, or else with bureaucracy, doctors and the "system".
No wonder we, as carers get worn out. I hope all goes well on Friday and you get some answers. You might find it helpful to write down your concerns and the things that have changed, put it in a letter and give it to the doctor before the appointment.
Im guessing that he is using the alcohol to self-medicate his anxiety when sundowning - hence wanting that lovely woozy feeling -, but that doesnt help you much.
Life with dementia just seems to be constant battles, with the PWD to get them to do things they dont want to do or stop them doing things they want to do, or else with bureaucracy, doctors and the "system".
No wonder we, as carers get worn out. I hope all goes well on Friday and you get some answers. You might find it helpful to write down your concerns and the things that have changed, put it in a letter and give it to the doctor before the appointment.
It is exactly what happens to me, which annoys me a lot. I had never thought it may be connected to dementia, but I had always thought it an aspect of OH's personality.
I can only be thankful that the consultant today was a wonderful man, who was so thorough, sensitive and professional in every way. Everything certainly has come together after all the investigations, including the MRI result, and memory tests and we now have a diagnosis which is both a relief and a blow. He has got mild Alzheimer’s with considerable ability left because of his higher brain function, which explains why it is so patchy in character. It explains the alcohol intolerance with little intake, plus all the other things that I have discussed on here and sought to alleviate. I knew in my heart that this must be the explanation, but at times you start to wonder if it is you who is deluded so to have the doctor confirm that all I have been trying to do is the right thing, is strangely comforting, because he made me feel cruel at times, denying him his dearest wish, more wine. We are going out for supper now and he has already forgotten what the doctor said so my work is not yet done.
Im so glad the consultant was knowledgable and helpful and that you now have a diagnosis.
It is usual for PWDs to forget or be unable to understand the diagnosis. I wouldnt bother with trying to get him to acknowledge that he has Alzheimers. Just keep going with what you have been doing, knowing that it is the disease, not you.
It is usual for PWDs to forget or be unable to understand the diagnosis. I wouldnt bother with trying to get him to acknowledge that he has Alzheimers. Just keep going with what you have been doing, knowing that it is the disease, not you.
@canary very wise words and I think that is how it will be. He does know that the Alzheimer’s word has been used but because he has also taken on board the ‘mild early’ he has translated that into ‘pre’. No harm there and he is quite happy with the memory problems explanation. Other people are scared stiff of any suggestion of dementia so probably the way to go in the short term. I am a bit anxious about telling my children even though they can see how he is more clearly than others.
Dear @Grahamstown I am so sorry for the diagnosis but at least you have one now - and one that fits with all the issues you have been trying to make sense of. I remember the feeling of relief at knowing what was the matter - and looking forward, if that is the way to put it, to being able to have a thorough discussion with my husband to plan for the future. Alas, he too forgot - or perhaps "forgot"? - the diagnosis within minutes, though he was furious with me for having taken him to the doctor, suggesting he did in fact understand more than he let on. He's made it clear since, by various nefarious means, that this is a discussion we are never going to be able to have. I am trying to accept that!
I feel for you very much, with respect to telling the children. I found that almost unbearable. And it wasn't done with one telling, either. I found it took quite a bit of time, over the course of months, for our son to take it in; and even now he comes back to the possibility of a misdiagnosis, because he'd rather his father was suffering from depression. (He also was - and remains - full of ideas about things I can do to help. So far I've not told him I am doing quite enough, thank you! But the words have been almost on my lips.)
So: Based on my admittedly extremely limited experience, I'd get on with telling the children without delay, because their adjustment may well take a considerable period of time (as indeed ours has done, when we think about it - even though they, like our son, have noticed problems already). The formal diagnosis is a different thing somehow: not just the Aged P's up to their usual, but a new and difficult hurdle. Very best wishes, Carolyn.
My mum never did understand that she had Alzheimers. In her eyes there was nothing wrong with her (except that she was a bit forgetful and that happened to old people ) so she would get very upset and annoyed if anyone tried to suggest that there was a problem. I never used the words Alzheimers or dementia to her - I always talked about her "memory problem".
My OH is now the same. Before diagnosis one neurologist stated categorically that OH did not have dementia! There is now no doubt that this is progressive, but OH has latched onto that and wont accept a diagnosis of dementia.
Its called anosognosia - you are truly unable to understand that you have something wrong with you because the part of the brain that understands this has been damaged - and this is a very common symptoms in dementia of all sorts. If someone has anosognosia then you will never be able to make them understand. Even if they say that they have dementia they will deny that it is causing problems. Quite often they know, deep down, that Something Is Not Right, they do not realise that this Something is actually them. Usually they think it is someone elses fault - often the main caregiver. OH realised that he was no longer doing thing that he once did, but thought it was because I was stopping him. He did not realise that he just couldnt do them anymore.
I would tell the children, but perhaps drip-feed the news because they probably wont be able to take it all in at once.
) so she would get very upset and annoyed if anyone tried to suggest that there was a problem. I never used the words Alzheimers or dementia to her - I always talked about her "memory problem".My OH is now the same. Before diagnosis one neurologist stated categorically that OH did not have dementia! There is now no doubt that this is progressive, but OH has latched onto that and wont accept a diagnosis of dementia.
Its called anosognosia - you are truly unable to understand that you have something wrong with you because the part of the brain that understands this has been damaged - and this is a very common symptoms in dementia of all sorts. If someone has anosognosia then you will never be able to make them understand. Even if they say that they have dementia they will deny that it is causing problems. Quite often they know, deep down, that Something Is Not Right, they do not realise that this Something is actually them. Usually they think it is someone elses fault - often the main caregiver. OH realised that he was no longer doing thing that he once did, but thought it was because I was stopping him. He did not realise that he just couldnt do them anymore.
I would tell the children, but perhaps drip-feed the news because they probably wont be able to take it all in at once.
Dear @canary, I just want to thank you so much. A number of your posts have been so helpful, very straightforward and precise - but this one really struck home and I keep repeating it to myself when I am out for my precious time alone, walking down to the university park. I.e., the anosognosia plus what you say here: "Quite often they know, deep down, that Something Is Not Right, they do not realise that this Something is actually them. Usually they think it is someone elses fault - often the main caregiver." When our (adult, 41 years) son first visited after my husband's diagnosis, after our son left my husband accused me of having "humiliated" him in front of our boy. I'd been so careful but still he said this - and what he meant, of course, was that he hadn't felt as competent as in the past so had FELT humiliated. However this feeling could not be attributed to dementia by my husband - and so it was blamed on my behaviour. Anyway I'm sorry not to have commented sooner but I did just want to acknowledge your clear-sightedness and help.My mum never did understand that she had Alzheimers. In her eyes there was nothing wrong with her (except that she was a bit forgetful and that happened to old people
My OH is now the same. Before diagnosis one neurologist stated categorically that OH did not have dementia! There is now no doubt that this is progressive, but OH has latched onto that and wont accept a diagnosis of dementia.
Its called anosognosia - you are truly unable to understand that you have something wrong with you because the part of the brain that understands this has been damaged - and this is a very common symptoms in dementia of all sorts. If someone has anosognosia then you will never be able to make them understand. Even if they say that they have dementia they will deny that it is causing problems. Quite often they know, deep down, that Something Is Not Right, they do not realise that this Something is actually them. Usually they think it is someone elses fault - often the main caregiver. OH realised that he was no longer doing thing that he once did, but thought it was because I was stopping him. He did not realise that he just couldnt do them anymore.
I would tell the children, but perhaps drip-feed the news because they probably wont be able to take it all in at once.
All his little foibles now seem to join the dots of his condition. When I asked him what he discussed with the doctor the other day, he replied ‘alcohol’. He had clearly been impressed by that and then I asked him how many units he could have per week. He kept guessing incorrectly. The consultant said that he was not going to say no alcohol even though that is preferable but that he must (i.e. I must) restrict it to 14 per week. He questioned him closely on what he was drinking and estimated that he must be having at least 20 probably 30 units per week. When I asked him if he could remember what the doctor said he had, he said that there was nothing wrong with him, but on closer discussion said that he had pre-Alzheimer’s, even though I know that it has moved on a bit from that. So he accepted that without trouble. Today my son called after I left him a message to do so, and we had a valuable discussion about treatment and support but I said that Dad is the same person with various difficulties and we must carry on as normal, which I think the Alzheimer’s website advises. He took it in and has some knowledge of the disease because his MIL has Vascular Dementia, lives alone with support and has an active life. I have decided that we must have a holiday if only to give me a break and I have booked a cruise which he is enthusiastic about. Nothing much has changed except that it has all changed, and I realise that everything truly has come together into a condition only explained by Alzheimer’s disease. I have become increasingly aware that he is anxious if I am not with him as the day wears on and I cannot leave him alone in the evenings when he is at his most vulnerable. He has been recommended one of the drugs and the nursing team notified so I feel that he is now ‘in the system’, for future reference. The future is unknowable and reading through the forums can vary hugely, so day by day we keep going. It is daunting and I still feel the shock.
Oh yes, I remember it well. It is a huge shock and changes your thinking and the way you respond completely.
Book that cruise and enjoy it. I cant take OH on holiday now, but I know that many people go with a PWD on cruses and Im sure they will have good advice for you.
Thanks so much @canary for your consoling words. I did think that we had better have a holiday while it is still possible because who knows what next year will bring.
Another little thread pulling tight, visiting friend. One of his oldest friends came for supper this evening because his wife was away, we normally have them as a couple. He told the friend that he had pre-Alzheimer’s but as the evening wore on it may have been obvious that it was more serious than that. OH thought that this was his chance for a few drinks but I was quite up front with this old friend who drinks very little himself because of his heart. He was similarly baffled by OHs inability to reason that alcohol was bad for his brain and should be limited as any thinking person would about his heart or liver etc. Alzheimer’s is different. He poured himself a glass very early which I promptly put in the fridge until later. Then he surreptitiously poured a second glass and he has had his quota for two days. Friend suggested that he had a non-alcoholic drink to no avail. All the little giveaways occurred, telling the same story over and over, not knowing who the characters were in a tv episode that he had already seen, putting his own coat on to encourage his friend to leave before it had even been mentioned. It was still early when he left, and OH immediately went to bed and has been up and down the stairs the rest of the evening. Thank heaven for good friends, we shall need them now.
Hello Grahamstown, sorry I have not been on here for a while. Just read through this thread and whilst I am sorry to hear of your OH diagnosis I am pleased you now know what you are dealing with. Your post here about pulling it together are so helpful to read. I am not to good myself at the moment, another family crisis along with OH situation has worn me down and I'm fighting to keep my sanity! Still no appointment for us, husband oblivious of my struggle, has no empathy or interest with family. I have had to switch off for self preservation for a while as I feel so unwell. Now I sound so full of self pity, I just need some energy and something good to happen. Thank you for sharing your experiences, it helps.
Hello Canary, reading this leaflet left a lot of bells ringing : My OH behaviours with people, lack of empathy, language difficulties and worsening memory. Still awaiting appointment with memory clinic, I haven't been able to do much chasing due to my own health and other issues, so down to me really. On an MRI a few years back OH was told of a (I think that is the right spelling) in the front area of his brain, wondering if this has a connection? Thank you for all your helpful posts.
Good morning @Pipeth I am so sorry to hear that you still are not getting the support you need. I realise that my OH was fast tracked because he finally ended up in A&E and then a ward where he got the MRI scan plus other things. That was a terrible experience because in A&E he was aggressive, disorientated and noisy, as well as uncooperative without sensitive pressure. He had shrinkage in his temporal (I think) and hippocampus areas which together with the ACE111 test confirmed the diagnosis. You are having to go through the outpatient hoops which is a much lengthier process. The only consolation I can give you is that my OH had to be firmly prevented from walking out three times in order for the full tests to be completed. That is very stressful and sometimes the person cannot be prevented from discharging themselves. Your remark about sanity rang bells because I began to wonder if I was going mad, especially when he merrily says all sorts of things to other people as if perfectly normal which they swallow up when I know it is all incorrect, e.g. all the tests were normal and he has no memory loss etc. Now I have the diagnosis I know I am on the right track. Brain changes on MRI scan are diagnostic but only if you have it confirmed by a doctor. Alcohol is his weakness and he drinks it secretly if I stop him even though he knows what the consultant said loud and clear.
I have just re-read the link that @canary posted about FTD and I can see there are some similarities with my OH but those didn’t show up on the ACE111 test but in the scan, and the hippocampal shrinkage is having the greater effect. It’s a bit of a woolly area because there is overlapping. The main thing is our response as carers and there is some guidance on that. However I have worked with dementia patients in the past, and it’s one thing to do your shift and go home, and quite another to live with it 24/7.
I have just re-read the link that @canary posted about FTD and I can see there are some similarities with my OH but those didn’t show up on the ACE111 test but in the scan, and the hippocampal shrinkage is having the greater effect. It’s a bit of a woolly area because there is overlapping. The main thing is our response as carers and there is some guidance on that. However I have worked with dementia patients in the past, and it’s one thing to do your shift and go home, and quite another to live with it 24/7.
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Dear @Grahamstown I think it is very hard after a diagnosis to get any space to be alone with yourself and reflect on the enormity of what has just happened. There is still the person with dementia to take care of: that hasn't changed! I am thinking of you and hoping that, at some point, before too long, you are able to find some breathing space. Carolyn. XXX
