Pulling everything together

[Grahamstown]

Watching the England Columbia match he has been quite peculiar with sundowning, must be the excitement. He is restless in the evenings and a bit strange so I have decided to cancel our proposed evening out on Saturday. I don’t think I can handle it although he wouldn’t know the difference.

 

[Grahamstown]

Phew he has finally gone to bed after saying goodnight several times, going up and down the stairs, and being very confused. When he saw the football on the news he asked if we had seen that even though he had been watching it all evening! He is definitely going through a sundowning stage again after not being so bad lately, shutting the windows and drawing the curtains when it is still bright light, restless, going into the cupboard to drink, not alcohol now because there isn’t any, but acting as if he has to drink secretly like he did when there was some. It’s so bizarre. I still get quite exasperated but try to control it with mixed results.

 

[Grahamstown]

The difficulties continue this morning. He had to get up earlier today rather than sleeping until he wakes at mid morning, and went down to get tea which he always used to do, but rarely now because he is in bed. His hand was shaking as he came in carrying the two cups, not on a tray! I feared the worst and yes I have had to clean the tea stains all the way up the carpet steps. I soak with cold water, scrub like mad and then blot it up with a towel and repeat if necessary, quite effective. So his efforts to do something for me backfired, so I felt a mixture of sadness and exasperation.

 

[Mudgee Joy]

Go

Gosh Foyles War is a good idea, pace is about right. I’ll put it on my list. I’d love him to watch The Wire but I think it will be too complicated, plus the accents and argot. We need to keep sharing ideas here!

I had to laugh yesterday. As you all know, as the whole world now knows, I have been doing mini renovations. Latest is, I have been unpacking book boxes, packed away while painters were here. 30 of them. Heavy books. So anyway I got to no. 11 yesterday (yes, believe me, I AM counting!) and emptied it and asked OH to flatten the 5 I’d done and put them in the back seat of the car to take to the tip. He asked me to explain how to flatten them so I carefully taught him until he’d got it.

I went back inside the house. He did NOTHING but came by a couple of minutes later and said with great dignity and formality, “I have to go and sweep up the leaves now. You are free to occupy yourself in any way you choose.”

So what could I do but go and flatten the xxxx boxes and put them in the car?!

Hi Mudge I bet this rings a few bells over your way too! @Mudgee Joy

Ha ha - yes funny how leaf sweeping is one activity that remains as an option for my OH when he decides to help - usually late afternoon

 

[Mudgee Joy]

Sundowning really does frustrate me !! I have trouble to keep It in perspective! My husband cannot find the bed or bathroom without help, in the evening; and in the day - no trouble!! If “THEY “ could just fix that simple problem I would be much happier!

 

[carolynp]

Ha ha - yes funny how leaf sweeping is one activity that remains as an option for my OH when he decides to help - usually late afternoon

Sundowning really does frustrate me !! I have trouble to keep It in perspective! My husband cannot find the bed or bathroom without help, in the evening; and in the day - no trouble!! If “THEY “ could just fix that simple problem I would be much happier!

Oh dear what a pain for you! My OH is now taking 45 mins to get ready for bed (yes I timed him last night)and so by the time he finally settles in I am tired and snappy. I’ve realised I’ll have to announce it’s time for bed at least that much earlier, if I want to get to sleep without being enraged and unable to go off.

Yes the leaves, talk about a compulsion! OH never in 38 years in this house had paid them ANY attention, now he is after them before they’ve even hit the ground.

 

[Grahamstown]

Thank goodness I am not the only one who gets snappy and cross with the stupidities of dementia @carolynp . I know it is unreasonable but I am only human. Every evening during our walk he mentions alcohol like a stuck record and it drives me mad. I do just say no but it is so relentless. I read in someone else’s post that hospitalisation can precipitate worse dementia and I am sure that is the effect that going into hospital had in February and I know that if he has to go in again he will suffer greatly and deteriorate again. An alcohol binge could do that and his inability to accept this is very frustrating.

 

[carolynp]

Thank goodness I am not the only one who gets snappy and cross with the stupidities of dementia @carolynp . I know it is unreasonable but I am only human. Every evening during our walk he mentions alcohol like a stuck record and it drives me mad. I do just say no but it is so relentless. I read in someone else’s post that hospitalisation can precipitate worse dementia and I am sure that is the effect that going into hospital had in February and I know that if he has to go in again he will suffer greatly and deteriorate again. An alcohol binge could do that and his inability to accept this is very frustrating.

Hello dear one. I can only imagine the extent of your anxiety and frustration that your OH may cause himself to be taken to hospital again, with results as in February. However, and I speak entirely out of ignorance (so be warned!) I am not sure that a period in hospital actually would cause precipitate decline. Rather, I imagine, it would be the sudden loss of the familiar, in all respects, and the concomitant uselessness of the usual compensatory mechanisms, which would expose the actual current level of ability.

I appreciate the disastrous effect is the same, and you may rightly consider I am splitting hairs. But the nightmare of February has loomed so large for you, in earlier posts, and is so dominating your worry about your OHs drinking, to the extent that you are holding yourself more responsible than any human being can bear (or indeed afford) to be.

I am so sorry if I am speaking out of turn. (I undoubtedly am!).

We have spoken before about the great similarities in the ways our academic husbands have managed to use their smarts, albeit unwittingly, to mask the direness of their respective conditions. I think we both have to be careful not to mistake that shadow for what is now the substance. I fear it leads us both to blame ourselves and to take far, far too much responsibility for a decline which, slow or fast, is completely and utterly outside our control.

My OH has started doing a late afternoon walk too close to sunset. (He cannot seem to adjust to the early darkness of midwinter and trusts his watch, insofar as he can still read it, rather than the skies.) Two nights ago he came home saying he’d momentarily lost his way when it suddenly got dark, then at once added “I’m only joking!”

I haven’t been able to persuade him not to go. One of these days he’s going to get lost. I can only hope a neighbour or student will help him. And meanwhile wait for spring.

 

[imsoblue]

@carolynp just jumping in here quickly to say someone in my support group had the "lost OH" problem when taking an evening walk. Someone suggested you slip a card in his pocket with his address or your phone number on it. Make sure he has a cell phone on him is another idea. Or write your phone number on his arm.

 

[carolynp]

@carolynp just jumping in here quickly to say someone in my support group had the "lost OH" problem when taking an evening walk. Someone suggested you slip a card in his pocket with his address or your phone number on it. Make sure he has a cell phone on him is another idea. Or write your phone number on his arm.

Hi darling! Feel like tattooing it on his arm with a blunt needle right now! BUT you are right, thanks so much for the suggestions; and actually as I was writing that post I realised I was going to have to up my act. C. xxxxx

 

[Grahamstown]

@carolynp no you are not talking out of turn at all because we are here to help each other and you are right that I am haunted by the February episode because in the emergency department, which he has no recollection of at all, he was literally demented which was shocking and sudden with no previous behaviour like this at all. He was rude to the staff, demanding, belligerent, confused, rambling, trying to get off the bed, out of the hospital, removing all the IV and monitoring equipment, completely out of it. I spent about 3 hours trying to calm him, restrain him and keep him in the bed, through the night, just like so many others on TP have had to do with their own loved ones for time without end. It was a glimpse of that hell and was a turning point in his decline. So yes I am doing everything I can to prevent a reoccurrence. It was quite out of character and actually switched my feelings from lover to friend, horrible. I have now got his phone on tracker and my son has joined me to help. I have set up the health app and my number in case of emergency on his iPhone and explained why he must carry it and keep it on, so far successfully, because that information can be accessed by anyone if they know what to do. He only looks at his emails never messages or phone calls, is unaware that there are any. Most of the time he is fine with his regular walks and routine, but in the evenings, pow! sundowning takes over, he doesn’t know what he is doing and his behaviour is bizarre. Perhaps my spilling out all this will help. We met friends for lunch yesterday and the husband said to me, he seems absolutely fine, I just nodded and thought of host mode, thank goodness for TP and the information we share on here. It’s truly a jekell and hyde existence. The wife knows the score and is very supportive in practical ways without saying too much. We are lucky.

 

[Mudgee Joy]

Hello all - I listened to two lectures via podcasts today that were very interesting and relevant - to many of us I think.

One was on depression - an English writer - book called “lost connections” or similar- there are apparently 9 causes of depression but those most relevant to me as a carer are 1. Trauma (that hospital visit etc) 2. Loss of control (loss of controlling my life and becoming a carer) and 3. Loss of close friends.
I think now that I am getting used to D , and have extra friends on TP, and have regained some control on life - feeling much better!!! Not depressed now just B annoyed sometimes.

The other lecture was on the brain and how toxins (eg protein in blood) builds up in brain over the day and deep sleep cleans up the brain - hence with sun downing the brain is clogged - then reset in the morning - yeah!!
All very interesting .
I would like to get a brain scan of my OH late evening and first thing in morning to compare !!
Goodnight and blessings to you all for sharing - xx

 

[Grahamstown]

The usual stuff but now I feel he is worse because dementia is not a static thing and he oscillates between appearing lucid and being demented. Obsessed by anything to do with alcohol, other people drinking it, passing a pub or a bar, having to drink non-alcoholic beverages and so on. He continues to be duplicitous e.g. going to get a soft drink in a bar when I am close by, coming back with a ’lemonade and lime’ and after a while smelling drink on his breath, tasting it and it is gin, something he never drinks. Well my fault for letting him get it and can’t even get a drink on his own now. He cannot keep anything in his memory for any time at all, is now dribbling urine after going to the toilet onto his pants, turning right instead of left, sundowning a lot in the evening which gets him into trouble as he wanders, in other words totally confused. So I really have to be with him most of the time. Just one more step on this dreadful road and I feel pretty awful about it. He is so dependent on me that I fear if anything happens to me. As already on the forums, can I take time off to be ill?

 

[Mudgee Joy]

Hi @Grahamstown - I hope you’ve had a “let up” at your place - so right about the ups and downs - I can’t suggest anything useful but I hope somehow you have had a break from the relentless drinker !!
I try to keep alcohol to a minimum here with mixers - but a friend dropped be earlier with a bottle of rose !! Mmmm
Nice thought - love to you - MJoy

 

[carolynp]

Sorry not to have replied sooner. I was aghast at what you are going through. Then today realised you have no way of knowing that if I don’t actually tell you! I can’t always rely on thought waves. So anyway this all sounds terrible and especially the urine thing, oh gosh.

As for time off to be ill, ha very ha. Although I did have a liberating realisation myself a few weeks ago, when it finally hit me that, if my OH were a man living alone, he would not now be able to, even with daily assistance. He would have to be in a CH. I’m not sure why I found it liberating but I think it’s because I’m the last bastion, and otherwise it’s all out of my hands.

 

[Grahamstown]

Update on the drinking. I have managed to keep him to one glass of wine in the evenings after a bad effect from more last week. It also seems to affect his bladder as well as the dementia because he starts going for a pee, being unable to go then can and this goes on all evening, up and down to the toilet. He does not do this all day but I am going to get it checked out just in case there’s some underlying problem. I don’t think it’s an infection. He is tired a lot of the time and has to lie down and doze. I have got him to sit down on the toilet now which has helped the dribbling. So not a normal picture at all and slow deterioration all round. Hope you all are coping and hugs all round x

 

[canary]

Well done on managing the drinking - I know you find it hard.
Could he have prostate problems? My OH was like this, but some medication has helped enormously.

 

[Grahamstown]

I have been thinking about how things have progressed since I started this thread, after a new alcohol thread was started. There are many of us with this issue and not necessarily with PWD who were heavy drinkers. Now I can control the intake and replace with non-alcoholic beverages with a huge struggle every day to prevent a visit to the pub, using donepezil as the main reason which does fall on deaf ears. By late afternoon he is confused and irrational until he gets tired and goes to bed. He is watching more tv than he has ever done in his life and can barely concentrate on reading. Since diagnosis and prescription of pills I have been able to understand and deal with many of the issues but it takes a toll, but I no longer feel the anger and lack of comprehension of the changed behaviour. Fortunately he is not aggressive or obstructive at the moment but more serious symptoms are appearing. He has forgotten his PIN and locked his credit card, and it is locked away with a couple of other cards no longer needed, he forgets to use his bus pass and pays for his ticket, he puts the wrong teabags into the cup for tea, he never remembers to take his pills, all memories are wiped daily from recent events and he is constantly referring to past events and saying the same things over and over again. The upside to this is that I no longer have to reason but just help and guide him through daily life, showering, changing clothes etc. etc. but he can still do all that for himself. I am getting wary of letting him do much on his own although in the mornings he is at his most lucid. We rarely go out in the evenings and to dinner with friends. Fortunately they understand and we go for coffee these days. Our lives have contracted down so severely in a short time that I can barely believe it. The cruise was great and he really enjoyed it although the alcohol was a problem, of course. I shall continue as long as I can stand it.

 

[foolishfriend]

My Mum has early-mid AD. She's not on medication het but she is a lot worse than her cognitive scores suggest (MMSE=48/50 ACE-R 83/100) probably as these scores can be skewed if you have a high level of education/worked in a professional job which she did.

I'm her primary carer. She has no short term memory at all and is incresingly disengaged/confused. She can't work the microwave today yet she could the other day. She forgets to eat if I'm not here and don't remind her.

The main problem at the moment is alcohol. She claims to have one small glass of wine, diluted with ice cubes per day but I know it's a lot more. She had half a bottle today and it's increasing. She's doing 'alcoholic' type behaviours like hiding her bottles, going off to get seemingly random things from the shop when I know it's to buy wine. When she's had a few links her confusion levels go up 100%.

I tell her that alcohol and AD don't mix and that she's thought to have a slow-developing disease but alcohol won't help this. She doesn't really listen to me and will just carry on what she's doing, and I fear it will get worse.

I really don't know what to do.

 

[try again]

The normal suggestions are to try non alcoholic wine or diluted wine. Does/would she notice?