Pulling everything together

[Grahamstown]

So many small habits combine to make a pattern of abnormality, and when I try to put them all together and search the forums, there they all are dotted around on different threads. I have solved one problem with help and advice, temporarily or permanently I don’t know which. The other problem of alcohol is a work in progress because my OHs personality seems to undergo a change around dusk and the obsession to drink begins, which I try to moderate. This evening was quite a tussle but he finally settled down and had a tonic water. By the time he wants to go to bed the crisis seems to be over. I have just found references to other habits, roaming around and staring outside into the dark, and the onset of boredom, something entirely alien to him before. Finding that these habits are fairly common while all being particular to each person, somehow is both reassuring and alarming, because it fills me with foreboding. Still pulling it all together does paint a familiar picture and I can then understand what might be going on. In the mornings he is a different person. We went to see the physiotherapist today and apart from the fact that he couldn’t answer some of the questions, he seemed quite engaged and completed all the exercises well and his weakness in his hands diagnosed which has helped him understand it, together with some exercises. Those he has yet to look at or do!

 

[LadyA]

Sundowning- the agitation as it gets towards evening - is very common. Have you tried closing the curtains before it gets to dusk? It might help a little. As for the alcohol, i suppose what you can do is limited by your husband's favourite drink. You could try non alcoholic beer, if a G&T is a favourite, i have heard of using a little of those "gin bitters" flavourings in tonic, without adding the gin. I've no idea if that would satisfy him though, as I don't drink!

 

[canary]

I immediately thought sundowning too.
Have you heard of "host" mode too? Its a very annoying phenomenon where the PWD can sort of pull themself together and appear much better (sometimes almost normal) in front of people they dont normally meet - usually relatives and medical staff. They cant maintain it for long, though, and it usually leaves them tired, grumpy and confused.

 

[Grahamstown]

@LadyA @canary Another morning, another day filled with good intentions. We have always been a team each with our strengths and weaknesses and now it’s my turn to look after him as he declines. Your words ring true about alcohol and sundowning and I have gradually got rid of all the alcohol and replaced it with lovely non-alcoholic drinks but they don’t create that ‘lovely woozy no worries’ feeling that he is after. He was born and raised in Southern Africa where ‘sundowners’ were a fact of daily life enjoyed by all the adult members of his family and still are even though alcoholism is rife. He is reliving his childhood now so I can see the connection. So that explains why he is apparently normal in the mornings and deteriorates as the day wears on. Also I think that most people would not and do not realise how he is because does appear ‘normal’ with people who only think he is forgetful much like they are. Also think that other people fear what may happen to them so are denying the problem and searching for a solution all the time.

 

[Grahamstown]

He got back from lunch out today at 1.30pm and announced that he was going out for a pint tonight so he was already thinking about it. I set boundaries by telling him that it was too early and by giving him a glass of water at 5pm when he wanted to go. It’s no good discussing or trying to reason, if I just say wait longer he does. He doesn’t drink enough water anyway. He finally left the house at 5.40pm for a walk before his pint so we shall see what happens when he gets back. I really don’t want to lose it tonight because it’s too stressful and makes me feel ill.

 

[Grahamstown]

He returned after about 45 minutes and went straight for the wine bottle, I left the room and went upstairs where he followed me and I said he should not drink wine but have a tonic water. He actually went down and got that but just had to have a small glass of wine later watching TV. I didn’t say anything but didn’t get angry either. He is quite merry and has gone to bed happy. The difficulty is the nightly battle to moderate his intake which I dread and is very wearing. I have very little alcohol in the house now except for what he can go out and buy.

 

[LadyA]

Could you dilute the wine? Gradually, not suddenly. Add a tiny bit of water and next time, add a tiny bit more to the bottle.

 

[Shedrech]

hi @Grahamstown
or swap the contents for a low alcohol/non-alcoholic alternative (especially if you have a screw top bottle as you can clean it out and re-use it several times)
there have been experiments done where people were given drinks they were told were alcoholic, but weren't, and yet the people reported feeling that 'drunk' whooziness you mention = the placebo effect - so your husband may not notice
whereas the drinks he knows are not alcoholic will never give him a kick - so maybe mix him a G&T, with only a literal drop of gin in it, and a slice of lemon, rather than merely offer him the tonic

 

[Bunpoots]

Something I've found that helps me when I really want a drink is to dip the rim of a glass in gin and then make a drink of tonic and a dash of angostura bitters. The first taste is the gin and the bitters gives a bit of a bite. Works for me when I'm off the booze for whatever reason.

 

[Grahamstown]

This morning my OH read an article in the newspaper about the effects of alcohol increasing dementia, and he asked me if I thought he was suffering from it. I said that I didn’t think it was dementia but that he had memory problems and that alcohol would not help. Amazingly he has had an alcohol free day by his own choice and when I asked him whether the article had struck him, he said that it had. He has commented on this as being a good thing and he is so much more tranquil. I took him to a special barbers birthday treat that I had bought for him and he had a constant whinge about going on the bus because we went to a different stop, how we were going to cross the road, where it was, and that on no account would he wait etc. etc. He was attended to immediately fortunately and it was a great success so that went well. He was fairly restless as dark fell but I encouraged him to do his checking and looking outside. This evening we watched the ninth episode of The Crown together happily but he did not recognise who either the Queen or Prince Philip actors were from previous episodes. I think he could start watching from the beginning without knowing what was happening. So finally a good day and no battle tonight, the first for such a long time.

 

[love.dad.but..]

So glad today and the evening has been a better day for you

 

[Grahamstown]

So glad today and the evening has been a better day for you

Thanks so much. I have logged on to record how well he is this morning because I have put all my bad thoughts out and now want to record a happier thought. He still cannot remember much about day to day events or recent past events but otherwise he seems calmer, happier and the depression of December and January seems to have lifted quite a bit. I must be cautious because one swallow doesn’t make a summer. He is still complaining about his weak hands but barely remembers seeing the physiotherapist and is not exercising his hands as he should be. I keep reminding him and he exclaims that he must do them. He has gone off shopping for toothpaste, so he can still do functioning things. There is no diagnosis but this seems like MCI exacerbated by intolerance to more than a small amount of alcohol. Looking through the threads I follow, all this seems characteristic of how brains work when ageing and with possible disease. As he keeps saying, he is nearly 80, and that is true. It is also true that he is a glass half empty sort of person and I read recently that there is some evidence that those sort of personalities are more likely to have dementia of varying degrees. Incidentally I am not far off 80 myself but tend to be a glass half full person.

 

[Grahamstown]

Forgetting things soon after they are discussed, sleeping and feeling tired a lot, not knowing the way from one familiar place to another, restless from about 4-8pm, loss of concentration and drive, seemingly like normal when we see friends, reminiscing about the past, and an obsession with his ‘sundowner’, a hangover from his southern African youth, which is a good drink at 6pm, these have all become more and more prevalent over this winter. Unfortunately the sundowner has become ‘sunsetting’ so he obsesses about having a drink from 4-6pm but by 8pm he is over it and ready for bed. I try to limit it night after night but it is a holding operation and very wearying, because of the bad effect even a couple of drinks has. So there is virtually no alcohol in the house now other than what he can buy. So all these symptoms paint an ominous picture which culminated in a physical collapse a month ago and a full assessment. We have the follow up on Friday and I really do wonder what it will reveal. The consultant said that it was quite a sudden and atypical decline and it doesn’t seem to fit any descriptions other than those everyone describes here and there on these threads. The closest description is of MCI because he can still function and communicate coherently even if in a repetitive way. I have put all these thoughts together ready for Friday so that I am prepared because I know he is going to behave as if he is perfectly fine.

 

[Rolypoly]

Have just read your thread. I didn’t want to read and run but would like to say good luck for Friday and you are doing a stirling job, alcohol has a lot to answer for with or without memory problems in the mix.

 

[canary]

TBH, @Grahamstown, it sounds to me very much like Frontotemporal Dementia (FTD), which is often initially diagnosed as MCI
See if this rings any bells
https://www.alzheimers.org.uk/downl...factsheet_what_is_frontotemporal_dementia.pdf

 

[Grahamstown]

I have read the frontotemporal dementia factsheet and one or two of the symptoms fit but it’s not a classic case. In fact the symptoms seem to cherry pick. Today for the first time he could not remember where the car was parked. He had gone out ahead of me while I paid and I saw him wandering through the car park looking for it. He immediately told me that he couldn’t remember where it was and when I pointed it out he said of course. Great support thanks!

 

[Grahamstown]

Count to ten, keep calm and carry on. I do think he is getting worse fast and at times in the evening doesn’t seem to know what he is doing.

 

[Amy in the US]

It's not unusual for someone to be better or worse at different times of the day, especially evenings. Sundowning is very common and can start pretty much anytime after midday, despite the name.

Sometimes I think the descriptions of stages and symptoms are helpful, and sometimes I don't. It's hard st times to remember that everyone is different and it's hard to pinpoint a stage or sometimes even a type of dementia.

I know that's not of practical help but sometimes it's reassuring to remind yourself of this.

How is the alcohol prevention going? It must be a lot of work and worry for you.

 

[Grahamstown]

It's not unusual for someone to be better or worse at different times of the day, especially evenings. Sundowning is very common and can start pretty much anytime after midday, despite the name.

Sometimes I think the descriptions of stages and symptoms are helpful, and sometimes I don't. It's hard st times to remember that everyone is different and it's hard to pinpoint a stage or sometimes even a type of dementia.

I know that's not of practical help but sometimes it's reassuring to remind yourself of this.

How is the alcohol prevention going? It must be a lot of work and worry for you.

Hi @Amy in the US felt fit to burst so wrote it down. Only alcohol in the house that which he bought and carefully rationed by me - most of the time. Went to the pub for half 5.30pm and immediately wanted wine upon return. I suggested that he had a tonic first, good idea he said. I saw wine had been drunk and he had poured it swigged it down and then poured the tonic to go and sip! So that was his glass tonight and he was very unhappy because then he wanted the ‘actual’ glass. The upside of this is that he has forgotten the incident now and even that he had the wine. The rest of the time he has settled down to a regular quiet life liking things to be the same not remembering certain things but functioning otherwise. As you say it’s a strange and irregular pattern, I know that it is not normal but that’s all.

Two hours later he is now relaxed and has gone to bed after watching tv and has not had any more wine, I don’t think.

 

[carolynp]

Hi @Amy in the US felt fit to burst so wrote it down. Only alcohol in the house that which he bought and carefully rationed by me - most of the time. Went to the pub for half 5.30pm and immediately wanted wine upon return. I suggested that he had a tonic first, good idea he said. I saw wine had been drunk and he had poured it swigged it down and then poured the tonic to go and sip! So that was his glass tonight and he was very unhappy because then he wanted the ‘actual’ glass. The upside of this is that he has forgotten the incident now and even that he had the wine. The rest of the time he has settled down to a regular quiet life liking things to be the same not remembering certain things but functioning otherwise. As you say it’s a strange and irregular pattern, I know that it is not normal but that’s all.

Two hours later he is now relaxed and has gone to bed after watching tv and has not had any more wine, I don’t think.

Dear @Grahamstown I too want to wish you all the very best for Friday. I do very much hope that you are given some clarity at least. It is so hard to have to deal with all this when one would just like to get on with dealing with one’s own ageing process! I so loathe that sense of panic and urgency when there’s a sudden precipitate drop in performance. My husband started speaking to me in Italian one day recently, thinking I was his sister. I sent him off to have a nap and he was fine when he woke. It’s such a peculiar disease. But sometimes, I find, after a shocking lapse, there’s a plateau. May this happen for you. In the meantime, my thoughts are with you. If it’s not too intrusive of me, do post after Friday, if you feel up to it, and let us know how things went. Very best wishes, Carolyn.