So bizarre !

[Ann Mac]

In a bad phase, I am not really present, I can't concentrate nor properly engage. Because, I recognize what is happening to me, even if Meds don't; I have learnt, am learning, to make big allowances for myself. I have to try and accept I can't do things as I once did, even though I want to - this has taken off some of the stress which means I have regained some concentration. I have learnt I MUST rest, stay in pyjamas for a few days when bad so that on better days I can function to my optimum. I have also learnt that many don't understand this in me which makes me

Oh hun - that must be so horrible for you Your insight is incredibly helpful to me, and I am sure, so many others - but I wish so much that you didn't have to go through all this xxxxx

I can see how Mil can - well not make things worse for herself, because it isn't deliberate - but how her lack of ability to accept her limitations makes this harder for her. Without insight into her condition, she can't do whats best for her, and I can only guess, most of the time, at what i can do to help or make it easier.

Today is - by the looks of it - going to be a hard one. She is firstly convinced that there are 'other girls' here, and secondly, wants to know where one of them - Marie - has gone? Nope - no idea who or what she is talking about with any of that!. She isn't sure of exactly who I am in relation to her, and I don't think she believed me when I said I am her D.i.l.. She is very distant, very formal, very frosty with me, and has retired to her room as she would rather do that than sit downstairs with me. And I really would like to persuade her to have a bath today, but think that there is little chance ...

 

[Spamar]

I, too, have been undecided about how much OH can read. He sometimes reads the headlines of the paper, but is he just looking at them or reading? Certain he can't cope with 24hr clock ( my preferred option) and not sure about clocks with hands. He always asks the time! We have also had a couple of good days, but iffy yesterday.

 

[Sue J]

Oh hun - that must be so horrible for you Your insight is incredibly helpful to me, and I am sure, so many others - but I wish so much that you didn't have to go through all this xxxxx

I can see how Mil can - well not make things wgforse for herself, because it isn't deliberate - but how her lack of ability to accept her limitations makes this harder for her. Without insight into her condition, she can't do whats best for her, and I can only guess, most of the time, at what i can do to help or make it easier.

Today is - by the looks of it - going to be a hard one. She is firstly convinced that there are 'other girls' here, and secondly, wants to know where one of them - Marie - has gone? Nope - no idea who or what she is talking about with any of that!. She isn't sure of exactly who I am in relation to her, and I don't think she believed me when I said I am her D.i.l.. She is very distant, very formal, very frosty with me, and has retired to her room as she would rather do that than sit downstairs with me. And I really would like to persuade her to have a bath today, but think that there is little chance ...

I too wish I didn't have to go through it but accepting it makes it a whole lot easier but it's the accepting that isn't easy. My hope is the insight does help others and even if I can't see it if you say it helps I am glad.Thank you for your understanding
How you describe MIL today is what I would call my 'bad phase' it would be inadvisable for anyone to try and get me to do something, I can bath another day. A nice warm drink placed nearby and something to eat just left for when/if I want/am able would help, but please don't reproach me if I don't manage it. Some soothing, quiet music (not in my room) but in the background would help. A couple of paracetamol and an open window for some fresh air (done discreetly) also helps get through these phases along with as much peace and quiet as possible - oh and you going and enjoying your day without worrying about me would also please me

 

[Tin]

Dear Sue, I do wish my mum had some understanding of her illness and listen to her body, so to speak. Sadly she has never been aware or has been in complete denial right from the start and I have to admit to never telling her or talking about it, we children have been guilty of just sweeping it under the carpet rather than risking upsetting our mum and I think that was our 1st big mistake. If we had, I think we would be able to handle things better now and I'm sure so would mum. As it is mum just thinks she has a bad memory and that's it, can't turn the clocks back!!

 

[Ann Mac]

I too wish I didn't have to go through it but accepting it makes it a whole lot easier but it's the accepting that isn't easy. My hope is the insight does help others and even if I can't see it if you say it helps I am glad.Thank you for your understanding
How you describe MIL today is what I would call my 'bad phase' it would be inadvisable for anyone to try and get me to do something, I can bath another day. A nice warm drink placed nearby and something to eat just left for when/if I want/am able would help, but please don't reproach me if I don't manage it. Some soothing, quiet music (not in my room) but in the background would help. A couple of paracetamol and an open window for some fresh air (done discreetly) also helps get through these phases along with as much peace and quiet as possible - oh and you going and enjoying your day without worrying about me would also please me

Thank you Sue - she actually accepted the bath - not very graciously, more with a snarled 'If you insist', but got her in there - I added some lavender, hoping it will help her relax, at least a little. I'm just waiting till she comes down, and I'll offer the warm drink, sandwich - and the paracetamol, and try some quiet music. Youngest and I are tackling the Christmas cake bake this morning (about 3 weeks later than we usually do) so we'll be in the kitchen and she will have some peace and quiet. Thank you - hopefully this will help, and Mil will have a better day than otherwise, thanks to you xxxx

 

[Sue J]

Dear Sue, I do wish my mum had some understanding of her illness and listen to her body, so to speak. Sadly she has never been aware or has been in complete denial right from the start and I have to admit to never telling her or talking about it, we children have been guilty of just sweeping it under the carpet rather than risking upsetting our mum and I think that was our 1st big mistake. If we had, I think we would be able to handle things better now and I'm sure so would mum. As it is mum just thinks she has a bad memory and that's it, can't turn the clocks back!!

Its not just your mistake Tin, my friend is just the same but I have (maybe because of my own symptoms) always ignored her dementia and am simply honest with her, brutally at times but I know her and know it is what helps her, as does she. But the Drs the dementia services learn not to talk about this disease and what it can do to you other than your memory. I have learnt so much from my friend as I have observed how she copes and has had to learn to cope, writing notes to remind herself for the simplest of things but it is what has been necessary. Behaviors people accepted would never change have e.g. spending loads on scam mail and also, at times listening to her body. I talk to her about my symptoms which allows her to acknowledge her own, if jot to me at least to herself. We sometimes speak of mistakes as if permanent damage is done but often when we look further we learn far more because of the mistakexxx

 

[Tin]

Slowly welling up but thank you Sue.

 

[Ann Mac]

Well, a full week now, with absolutely NO severe agitation ! We get the 'I'm going to bed' still, from about 6 or 7 pm, and occasional snarly retorts when we explain she has to wait for her 10pm medication, and we have had 3 or 4 brief 'I'm going home' spells, but it just hasn't gone anywhere major in any instance. Delusions still there - had some corkers this past week - but nothing that has seemed to cause her any great distress. Still very much 'glass half empty' and inclined to be tearful - but the extreme verbal aggression and the bad sundowning just hasn't happened

I thought she was going to kick off on Saturday - we had a brief mention of the 'little one' and the 'babby', and she had the 'munchies', but although I'd describe her as teetering on the edge of sundowning and agitation, it went nowhere - same on Sunday, but Monday, she trotted off to day care (the first week of 4 days a week, instead of just 3 there) bright as a button.

Last night, picking her up from day care, she got in the car and straight away into what a horrible day she had had (though she couldn't say why, just seemed determined to be miserable, and have something/anything to worry and complain about) and I tried to distract by telling her we were getting fish and chips for tea. Straight away focus on the upcomming food, and we then had 'Are you getting fish and chips for me? Can I have some? Will you be getting me a fish?' all the way to the chippy, followed by her complaining, 30 seconds after we had ordered the food, how slow they were and asking had they gone to actually catch the fish, it was taking so long

Food in my hands, she was hell bent on getting back to car - put her in with the usual 'Tuck your feet in, and I'll fasten your belt' instruction - only she was so focused on the food, so intent on getting back and getting stuck in, that she completely ignored me and as I leaned into the car, she pulled the car door shut. Smacked me right down the side of the face, and I said some words that would have made a navvy blush! To be fair, it really wasn't intentional and she was apologetic and obviously felt bad - for about half a minute! By the time I got round the car and into the driving seat, we were back to 'Did you get some fish and chips for me?'. But - I do think this incident had an impact. Although half an hour later, when she suddenly noticed the state of my face, and asked what happened, once I explained she straight away said 'No - that wasn't what happened' and completely rewrote history. It was nothing to do with her, it happened in the middle of the street and she saw it - but had no involvement. But I think that inital feeling of regret and perhaps guilt lingered, because she was clearly unsettled and it showed. However, it got no worse than the demands for bed and a few not so nice comments.

This morning she has got up, stood at the doorway and questioned me about has she got to go to the wards or the office?, is she going out with the girls today?, has she got any letters to write? - and when the answer to all that was no, she told me that she would just 'have a biscuit and some tea' and was going back to bed! And that is exactly what she has done

 

[Tin]

Think mum is doing the same now Ann, she has closed her bedroom curtains, its 1.30pm, think she is heading for her bed, not going to stop this anxiety/sundowning if I distract her, the same behaviour just continues where it left off. Coat is on today.

 

[Ann Mac]

Hope the coat comes off soon, hun - can you not hide it, once it is off? Or will that cause more distress? xxxx

 

[Tin]

Hope the coat comes off soon, hun - can you not hide it, once it is off? Or will that cause more distress? xxxx

Sorry Ann, just catching up, /the hooded coat is her favourite at the moment, when I take it away to wash and this will have to be soon, just picks another coat. Wandering does seem to be a huge part of mum's dementia, I have tried to minimise this by taking her out for walks but this only makes a small dent in the whole thing. In a way I am looking forward to some really bad weather, it will stop her crossing the threshold.

 

[MrsTerryN]

Mum escaped from the nursing home. Only for a few mins. There was a tradie there who didn't check the door behind him and apparently mum was out in a blink. A woman sitting on the couch asked "is she supposed to be outside?" two directors took off running after mum. The one who rung me said your mother can certainly move.
She is supposed to still need the frame?
I was a bit worried about how she would be when I got there tonight as they said she was cranky and a bit agitated when they caught up to her and brought her back.
Well mother is calmly reading the paper in her chair by the window. Took her dinner which I bought for her she said hello, laughed and said "I escaped today" laughing and giggling the whole time while she told me the story.
She thought it was a hoot. One thing spoiled our visit she said "it is about time I go home" I ignored it. I think she has only said that in passing once or twice before
Though days like today with a mother who was conversing, almost no impaired speech, who had memories of the outing from Sunday, makes me (just a flicker) should she be at home?
I do know she can't.
Dad is dead, she is incontinent, her speech most days is incomprehensible, she becomes very confused during the day if not all day, she falls, she doesn't eat, she doesn't bathe, I live 45+ mins away from her well their house.
It is just so weird that, like Ann's MIL, mum has been rather calm.
I did check and they haven't changed her medication so I don't know what it is.
Almost waiting for the other shoe to drop.
At the moment I am only visiting four times a week so she can get used to me not being there every day so hopefully when I go on holidays late next year there won't be a massive meltdown like when I went away last time.
This condition is so weird and changing like a tide. I just never know what mum will be like.
Interesting she hasn't been on the bus for two days, the bus was in for maintenance, and the absence of her outings do seem to make her more 'I have had enough' 'they do nothing ' when she goes on the bus her temperament is much better.
Also today was the first day in months she was happy to have the TV on. It was so weird.

 

[Ann Mac]

I prefer the sun and heat, Tin - but for your sake, roll on the rain and storms, hun x

OMG Terry - you just never can be sure about capabilities, with dementia, can you? And isn't it odd how some things do stick in the mind. Mil - on the few occasions she has gone 'walkabout' - has also been very pleased with herself, and retained the memory for a while - but its selective memory, I found. On one occasion, before her bus pass mysteriously vanished (shhhhhhhhh!) she managed to get as far as the village where she used to live. Mils account is that she went 'straight there, had a coffee in the cafe and came back' - in reality, it looks like she managed to get at least one wrong bus, was helped by a stranger to get onto the right one, was spotted by the girls in a cafe there, who thankfully knew her, and they phoned a taxi and put her in it to get her back here. But the laughing and giggling and being rather proud of herself sounds very like your Mum, after her 'great escape'!

I can understand the brief moments of wondering 'Is she really that bad?', too - this last week, I've actually found myself occasionally falling into the trap of feeling that maybe Mil isn't that bad - the odd moments/periods of calm and reasonable behaviour are so welcome, I think wishful thinking kicks in! But, inevitably, I think we get brought back down to earth, with a bump. Last night, Mil got agitated - not as bad as previously, but more than the last few days - we had continuous 'I'm going to bed' from about 8pm, and then 'Why won't you let me go home', followed by her informing us that if we wouldn't 'let her go' she was going to sing loudly so we couldn't watch the TV ! And she did - until I very deliberately raised my voice, and told her she was basically making a fool of herself, and acting like a 3 year old. She stopped the singing, but we then got the sighs, and huffs and sniffs and the odd muttered comment till she was able to go off to bed. I've got everything crossed, hoping that was 'just a blip' ! However, we have a hospital appointment on Friday, and if anything is going to badly affect her, it will be that - so we'll see!

 

[MrsTerryN]

Talking about the bus Ann. When dad was dying the hospital called me and said he is going. Son was at uni husband was at work and so was I.
We all had our cars because we knew the end was near.
So I rang mum at about 3 PM. She would not wait the fifty mins for one of us to get over there. She was adamant she would catch a cab. Hospital maybe twenty mins from their place.
4pm son arrives at hospital, 4.20 I arrive, about 4.30 husband arrive. No mother. So stressing out about catatonic father and missing mother. We had rung all cab companies not even considering a bus. We rang the other local hospitals in case she got confused which hospital. She finally turned up at 5.45. I had given myself a deadline of six PM to call the police.
Where have you been mum? Ahhh well I couldn't get a cab. So I caught a bus.
The upshot mum went the wrong direction, the bus company got someone to meet the bus at a bus stop that person put mum on another bus, organized for someone else to meet that bus and out her on the bus to the hospital.
I did ask did pay? " Huh pay for what" was the response.
Just for interest my husband drove her home and organized dinner for her.

 

[Ann Mac]

Oh Boy - I can just imagine the stress you all went through, especially you, waiting for her at the hospital - you must have been frantic! thank Goodness the bus company were so helpful - you know, there are more than a few times when Mil would have been in a real mess, if it wasn't for the kindness of strangers in situations like that!

Just got Mil up, and its hard work this morning Once again, somehow, mysteriously in the night, both her legs, she tells me , have been broken. Handing her the flannel to wash, she was completely out of it, and I had to guide her hand up to her face to get her started. Its taken forever for her to finish dressing and come downstairs - wearing one sock, carrying the other (tights are beyond her now, and she is so uncooperative/uncoordinated that I honestly can't get them on for her) telling me that the sock 'isn't working'. I went to help her get it on, but she 'glued' her foot to the floor, pressing down as I tried to lift - I honestly thought it was something she couldn't help, but glanced up and saw the 'smirk' - a while since I've seen that expression. So I stopped and told her that sorry, but my back was aching (which it is) and she would have to do it herself. She is now like the rhyme 'Diddle, diddle dumpling, My son John', with 'One sock off and one sock on', absolutely bolting down porridge and toast, slurping, chomping, gulping and in between telling me that people will think I am dreadful letting her go out with only one sock on ! My response of 'That's OK - let them think', has not gone down well, but I refuse to play that sort of game, I'm afraid!

Roll on 9 and the mini bus!

 

[MrsTerryN]

See Ann that is what mean. What a difference (cliche I know but true) a day makes.
So today you have the lovely food noises and broken legs. I hope that bus turns up on time for you.
Mum was oblivious to all the drama. Bit of a giggle she walked in to the room and told dad to wake up. Didn't work. She thought he was just not being good.

 

[Ann Mac]

Well, 'bizarre' doesn't even come close to what we got all day yesterday, in terms of delusions and extremely odd beliefs!

Thankfully, there was no massive distress or anger, just a constant stream of unrelated questions and comments about non-existent events and situations, with sometimes the 'delusion' changing or vanishing as you attempted to answer what she was asking - which added hugely to the confusion.

She didn't get up till after 11a.m., but straight away , ravenous appetite - barely finished her usual large breakfast before she was asking for a 'bit of bread and butter'. By 1 pm, she had eaten porridge, 4 rounds of toast by themselves, 3 digestive biscuits, a piece of bread and jam, and two fried eggs on two more pieces of toast! And right from the off, hyper and from one fixation to another. She went looking for, at various times in the first couple of hours after she woke, the 'suit she had worn to the meetings this morning', the man she was giving the 'stuff too, the book with the list of the 'arrangements for the cabinet' she needed for work, the sausages she had cooked for 'that chap' to eat, was insistant that she had already washed and dressed (whilst standing there in yesterdays knickers and her dressing gown!), she had to find the 'box with those round things in', to check on 'the little one' in the 'back bedroom', asking me where the 'babby' had gone, asking me where her little girl had gone, telling me she was looking forward to cuddling up to sleep with the little one 'tonight', and several times, 30 seconds after she has spoken to OH (who was up and down the stairs, fitting out the bathroom with new shower and tiles) asking me when he would be back from 'working abroad', from visiting that woman, if he was coming to visit her tonight, if he was out buying her the papers she needed, if he was taking the 'boys back home'.

At about 5pm, it actually got worse! There was barely a pause between the comments/questions - what did I think about that man being released? 'You know, Ann - the one the FBI came here about, he's a friend of one of your daughters, they had to let him go?'. At that one, I just looked at her and - head spinning and completely mashed at this point - and said 'FBI?'. 'Yes', she said - You made them tea and toast and they wached my husband on the boat, and they had their guns'. We had her asking what time her husband was coming from the cemetry to collect her? He'd gone there to get the book back. She said she was anoyed that the white dog had been jumping on the sofa, and thanked me for not getting angry about it. She also thanked me for the lovely weekend, and went on about how nice it was of me to go to all the trouble with writing everything down and arranging the dancing. OH had nipped to the shops to pick up milk, and bought me, youngest and Mil a bar of chocolate each - she constantly offered the chocolate to everyone else in the room, whilst packing it away at a rate of knots - with maybe 4 squares left, she started saying it should go in the fridge - youngest took it for her, and as she came back, Mil asked who had taken her chocolate - yongest reminded her.' Oh yes, she said - but who has my chocolate?'. Youngest fetched it back and as she went to hand it to Mil, Mil asked her to put it in the fridge - and when she did, Mil then wanted to know who had stolen her chocolate! We also had constant references to the babby - she KNOWS I have a 'babby', she came to see me in hospital last week when I had it - the little one, her own little girl, her mother, how she was 'going home', her suddenly and repeatedly jumping up to get 'that thing' from bathroom/bedroom/kitchen/the shop - non-stop!

She saved the best till just before her bedtime, when she wanted to know the details of tomorrow nights concert, in America, that she was going to, to see her son and her grandson sing like Elvis! As she talked, the story grew legs and more details emerged, about how her son always sang in concerts (like me, he is tone deaf, btw) and the costumes and the songs, and how it had been arranged that she was going. We just couldn't keep up, and both OH and I reached for the pain killers, for our banging headaches, when she finally went up the stairs!

I got up this morning to all the downstairs lights blazing - so she must have been up in the night - I did encounter her at about 3a.m., coming out of the bathroom, but I had no idea she had been downstairs. I can't see anything out of place, but I think we need to put a stair gate or some sort of alarm in place, just in case - usually, I hear her if she starts for the stairs, I can only think I was so worn out with keeping up with her yesterday, that for once, I was tired enough to sleep through!

I don't think its a UTI, no typical symptoms and as I said, she wasn't distressed, just hyper and just totally in a ficticious world - but, I've been caught out like that before, so if today is no better, then its sample off to hospital on Monday morning, and - as she is already on a maintenence dose of AB's - an increased dose, if needed, will give us a couple of days of tummy upset to deal with - at the moment, with my ears still ringing, and my head still spinning, I think that dealing with the runs would be preferable to what we had yesterday!

 

[2jays]

Phew! I feel I have lived every second of your day and I'm exhausted just reading about it.... No wonder you didn't hear her during the night

My mind was buzzing trying to think of things to "match" what was going on in her thoughts to things that may have happened on the telly... On the radio.... Way back when in the past that something yesterday triggered in her memory...

It's just relentless isn't it. Just as you have "worked that one out" the goal posts get moved.

Well done you for getting through that day.

xxxxx




Sent from my iPhone using Talking Point

 

[MrsTerryN]

Oh my gosh. Not quite sure what else to say. Busy perhaps

 

[Ann Mac]

I think, 2jays, that the exhaustion and banging head was due at least in part, to trying to work out what on earth sparked the various 'beliefs' - she tends to ask for programmes like 'CSI' - though I don't think she can follow them now - so maybe thats the FBI? And maybe something like an ad for the X factor (which daughter didn't get to watch last night - again!) was responsible for the 'Elivs songs and concerts' - but for the most part, I was flummoxed. Half the time when she was leaping up to look for various items, she couldn't give me more than the very vaguest idea of what she was actually looking for - yet, clearly expected me to know and be able to find whatever it was, from a discription that perhaps consisted of her telling me that its 'the blue bit that goes around my finger and into the box - you do know Ann, I always have it with me' ! She got a little frustrated when I just couldn't tell her 'what its called', when faced with a discription like that - but she swithered from one thing to another so quickly, that at least the frustration and annoyance didn't get chance to build, which is one small mercy - I guess Relentless is an very apt word for what it was like!

Hi Terry - 'busy' is another good word too, lol - I'm surprised she managed to be awake during the night - I would have thought that she would be as shattered as we were!

I heard her - about 10 minutes ago, heading to the loo, but she has gine back to bed now - however, damp undies left in a heap on the bathroom floor, and while thats not unusual, even when she is infection free, its making me think 'hmmmmmm - maybe it is another UTI' !