I need a 28 hour day as it is. OH THE TISSUES IN POCKETS AND UP SLEEVES. In this area I have become a little obsessed checking and rechecking all pockets before they go in the wash, unfortunately the dryer I had to buy last week does not help remove all the washed tissue bits. I have tried to re introduce cotton hankies but did not work, yet mum is quite happy to use tea towels for this job. Hope you can catch up with work, that's one area I don't have to 'fit in' Without realising it, think I took early retirement this year, only problem is cannot get into my pension fund until I am 62!!!
So bizarre !
- Thread starter Ann Mac
- Start date
Feels some days like we are awash with tissues - and loo paper! Every day she fills her pockets, handbag, sleeves and bra with the flipping things, and leaves them scrunched up and piled on the furniture, tables and worktops. We buy the big multipacks of tissues from one of the trade warehouses, 14 boxes at a time - and are lucky if they last 3 weeks. And every time she goes into the bathroom she rips off a dozen sheets of loo roll and up her sleeve or in her pockets they go - and again, we go through a whole loo roll at least a day, because of this. Sometimes, despite having tennas, she folds wads of tissues into her knickers, and they have an unpleasant habit of working their way down her trouser leg and falling on the floor as she walks round. And I nearly always manage to miss at least one tissue when I do the laundry 
I'd love to work more, but its really hard - I've had to pass on two out of 3 events, that I wanted to cover, to other photographers in the last 3 weeks I gave up yesterday, barely getting through 100 images in edit, as she was in and out of the fixed notion that she had to go to college or town and wanted me to open the door for her to go by herself I had to keep stopping and distracting, but at about 2pm, she slipped into the sundowning type frame of mind, and then it was all gloves off. She was looking for the phone to report me to the police, banging on windows and doors - neighbours were getting into their car on their drive, and she stood by the glass panalled front door, banging and shouting 'help me' at them. OH was her husband (again) and she went on and on about how he would strangle me when he came to pick her up and found out what I'd done. The 'Babby' again went missing and she was sure I'd done something to it, and aside from the usual names and insults, I was also accused of 'stealing her slippers off her feet', hitting her on the feet with them, then hitting her 'round the head' with them The only time she was relatively quiet and polite was either when she was eating, or asking for food - and again, agitation equals appetite, and she ate for Britain yesterday. It wasn't till just after 8pm that she suddenly started to calm down, and though we got a lot of repetition, at least she wasn't as agitated.
I'm glad its day care today - 3 days of long periods of her being so wound up is really exhausting
I'd love to work more, but its really hard - I've had to pass on two out of 3 events, that I wanted to cover, to other photographers in the last 3 weeks
I gave up yesterday, barely getting through 100 images in edit, as she was in and out of the fixed notion that she had to go to college or town and wanted me to open the door for her to go by herself I had to keep stopping and distracting, but at about 2pm, she slipped into the sundowning type frame of mind, and then it was all gloves off. She was looking for the phone to report me to the police, banging on windows and doors - neighbours were getting into their car on their drive, and she stood by the glass panalled front door, banging and shouting 'help me' at them. OH was her husband (again) and she went on and on about how he would strangle me when he came to pick her up and found out what I'd done. The 'Babby' again went missing and she was sure I'd done something to it, and aside from the usual names and insults, I was also accused of 'stealing her slippers off her feet', hitting her on the feet with them, then hitting her 'round the head' with them The only time she was relatively quiet and polite was either when she was eating, or asking for food - and again, agitation equals appetite, and she ate for Britain yesterday. It wasn't till just after 8pm that she suddenly started to calm down, and though we got a lot of repetition, at least she wasn't as agitated. I'm glad its day care today - 3 days of long periods of her being so wound up is really exhausting
Hi Anne and Tin, I have been reading your posts and I just want to say that you are saints for what you put up with (as are everyone one who has this nightmare illness in their lives)..It must be totally exhausting, you have my deepest sympathy and I have nothing but utter respect for you all...Take Care xxx
have my deepest sympathy and I have nothing but utter respect for you all...Take Care xxx
Hi Anne and Tin, I have been reading your posts and I just want to say that you are saints for what you put up with (as are everyone one who has this nightmare illness in their lives)..It must be totally exhausting, you
Thank you halojones, but I think everyone on here has issues just as bad to deal with - they may be different, but there isn't one thing I've come across that isn't heartbreaking and hard for those dealing with it xxx
Mil wasn't happy about day care this morning. The day got off to a bad start with her 'having an accident', and her bedroom floor awash with wee
I really feel for her at the times when she is aware of horrible incidents like this, I can imagine how awful she might feel, so I was very sympathetic and reassuring - and she actually said to me 'Being as your feeling kind this morning, can I stay home instead of going to work on the ward?' (She means day care - its either the town hall, an office or 'the wards' to Mil). I gently said No, trotted out how she couldn't let them down,. they need her help, and then she developed a headache. So, tears, pleas, claims that her head is going to fall off, begging and demanding that I let her stay home - but I've been here before, and I know its rarely a real ailment. I gave her paracetamol (just in case) and hardened my heart - and I noticed the weak and wavering voice went when she called me a heartless B**** and accused me of having a swinging brick instead of a heart Omg. Truly horrendous scenarios.
I feel for you. I do.
My mum who appears to be sleeping her time away showed her not so frail side when I and the family visited. There was a soft rubber ball, it had pieces cut out so we started throwing it to one another and she not only caught it evert time but flung it back with quite a bit of strength and inter acted very well with my youngest grandson.
It just shows that we never have a true picture of what they are still capable of, it's like the primeval survival instinct goes into overdrive.
I feel for you. I do.
My mum who appears to be sleeping her time away showed her not so frail side when I and the family visited. There was a soft rubber ball, it had pieces cut out so we started throwing it to one another and she not only caught it evert time but flung it back with quite a bit of strength and inter acted very well with my youngest grandson.
It just shows that we never have a true picture of what they are still capable of, it's like the primeval survival instinct goes into overdrive.
I know what you mean dottyd - Mil can appear to have lost an ability for several weeks - for example, knowing how to turn on the tv and change channels, at the moment, she just presses random buttons and gets very frustrated - but twice in the last couple of weeks or so, she has surprised us. Once by, within just a minute or two, negociating her way through the menus on sky to get to the games, and sitting there playing one of them (that she used to love, years ago) and then, just last week when she got up in the night and we were woken by the TV blaring - came down to find her sat watching some American detective show !
Terry, can't tell you how many times Mil has been adamant that she has to go to work, or go an find a job - it happens at least a couple of times a week, and sometimes we have whole days where she frets about it!
The dogs we only have occasionally - but you all klnow about the flipping babby, the little one and the little girl
Terry, can't tell you how many times Mil has been adamant that she has to go to work, or go an find a job - it happens at least a couple of times a week, and sometimes we have whole days where she frets about it!
The dogs we only have occasionally - but you all klnow about the flipping babby, the little one and the little girl
Mum's working or wanting to get a job, dogs and baby stuff I think is because all 3 have been a big thing in her life. She has had lots of different jobs in her time, been a full time housewife and mother and then helped out a lot with bringing up her one and only grand daughter. We have always had dogs still do, and now with the addition of cats, guinea pig and hens! All of this up to only 4 years ago. In theory mum should be really busy, because all is still on her mind to do, every now and then she wants to go and clean out hen house, but she can't she has forgotten how to do it and the best she can do is stand and hold the plastic bag for me and of course she gets bored with this very quickly just drops the bag and wants to go back into house to look for something else to do. Her baby fixation is fairly new, in her bedroom, which she now calls the baby's room, there are a few photos of her grand daughter when much younger, these are the baby she is referring to and they get moved around the room, sometimes I find them on the pillows almost covered up with the duvet and of course there is her little dog which is always encouraged to sleep on cushions and pillows and then covered up with whatever is to hand, as I type this, dog is just behind me on sofa with coat and blanket and mum is checking out the baby's room. This morning she is happy, and I am sort of, until she goes into my bedroom and once again claims everything in there is hers and starts removing it!
Oh, I really don't know how you do it, Tin and Ann Mac and others on here! I think for one thing, I simply wouldn't have the physical stamina to keep going as you do. I don't sleep well, but at least I can lie down and rest, on a reliable basis each night (at the moment), and my bedroom is not constantly re-arranged!! Gold stars to all of you Not that that helps.......
I'm sorry you have such trouble working too. I think this is an issue that is often under-estimated. Work could or should provide us with so much stimulation, as well of course as income.....Like Tin "I think I took early retirement this year".....interesting how that happens, and it's so difficult to get back into many areas. Ann Mac, beware
Hope you all have as good days as you can
Lindy xx
Not that that helps.......I'm sorry you have such trouble working too. I think this is an issue that is often under-estimated. Work could or should provide us with so much stimulation, as well of course as income.....Like Tin "I think I took early retirement this year".....interesting how that happens, and it's so difficult to get back into many areas. Ann Mac, beware
Hope you all have as good days as you can
Lindy xx
I don't know how you have the patience. I'm at the end of my tether with this long-distance caring business. Today my father tells me he's taken himself off the waiting list for the new specialist nursing/dementia facility because he wants to go to South Africa to search for Madelaine McCann. I call the ward sister. I try to find out why a man judged to be mentally incapable has been asked if he wants to go to the new facility. They'll call me back. Or maybe not. Maybe I should call them back tomorrow.
I remember when my grandmother was getting old. He gave her a couple of hours a month of his time even though he lived 30 miles away. Living 1000 miles away, I've given him 3 months of my year and my income has nose-dived so much that we're losing our house.
I COULD SCREAM!!!
I remember when my grandmother was getting old. He gave her a couple of hours a month of his time even though he lived 30 miles away. Living 1000 miles away, I've given him 3 months of my year and my income has nose-dived so much that we're losing our house.
I COULD SCREAM!!!
Tin, I often think that Mils fixation that she has a husband, and her 'drafting' her son in to fill the role is because she I think for a large part of her life defind herself as a 'housewife' first and foremost - the biggest part of her life, I guess, and a role in which she felt secure, so perhaps trying to re-create it? She did work part time at least, a lot of her married life too, and as a volunteer in charity shops for several years after she was widowed - so I get when she thinks she has to go work in the shop, or clean the office, or go to the factory - all jobs she has done. But where the idea that she has to go work on the 'wards', or the 'town hall' or even 'the solicitors' comes from leaves me stumped - especially as she always makes it clear she really doesn't like working in whichever of these places she is convinced she is employed by. Its the same when some mornings, she gets up convinmced she has to go to school, or panics because she hasn't learnt her words for her teacher - school, I get. But she more often is convinced she goes to 'College' and when this happens, her fretting is nearly always about she doesn't want to go because she isn't 'clever' enough. I know that she never hankered after any further education, because when I first started doing college courses, maybe 7 years ago, she and I talked about it and she was always adamant that she was more than happy just to be (as she put it) like all her friends and simply be a wife and Mum who worked for a bit extra. She had no desire for any particular career or job - so this conviction that she is going to college (usually, if asked, she says its to get her certificate) puzzles me.
I do think Mil might be less stressed about the 'babby' if she had a physical object to focus on, as your Mum does with the photographs - but so far, when I've tried a doll or teddy, she has either ignored them, or been scathing with me, asking how old do I think she is And as for her appropriating your belongings - well, I struggle enough with her claiming my husband and (for the first time recently) claiming my youngest is her child - if she starts nicking my stufff as well, I think I'd go loopy x
Oh Lindy - you don't know how much I stress about working I absolutely love what I do, and would so love to do more - I'm just hoping that if I can keep the wedding side ticking over at least, that I'll be able to get back to that, one day.
Poor you Redlou - what a nightmare! Surely no one at the facility is going to take your Dad's word and just remove him off the waiting list? It just beggars belief! I am so sorry to hear about you losing your house, hun - no wonder you could scream You must be so worried x
We had a fairly calm night, last night - which was such a nice change, and much needed - and so far today, although she has been a bit obsessive and fixated on where OH is and when is he home, no sundowning (yet) , no nastiness - and no Babby/little girl/little one (again - yet) - which is surprising, because she had to go for an ECG today, and a hospital visit nearly always causes her upset, and brings the 'little girl' out to play!. Got fingers crossed that it will last, and we get another peaceful evening
I do think Mil might be less stressed about the 'babby' if she had a physical object to focus on, as your Mum does with the photographs - but so far, when I've tried a doll or teddy, she has either ignored them, or been scathing with me, asking how old do I think she is
And as for her appropriating your belongings - well, I struggle enough with her claiming my husband and (for the first time recently) claiming my youngest is her child - if she starts nicking my stufff as well, I think I'd go loopy xOh Lindy - you don't know how much I stress about working
I absolutely love what I do, and would so love to do more - I'm just hoping that if I can keep the wedding side ticking over at least, that I'll be able to get back to that, one day.Poor you Redlou - what a nightmare! Surely no one at the facility is going to take your Dad's word and just remove him off the waiting list? It just beggars belief! I am so sorry to hear about you losing your house, hun - no wonder you could scream
You must be so worried xWe had a fairly calm night, last night - which was such a nice change, and much needed - and so far today, although she has been a bit obsessive and fixated on where OH is and when is he home, no sundowning (yet) , no nastiness - and no Babby/little girl/little one (again - yet) - which is surprising, because she had to go for an ECG today, and a hospital visit nearly always causes her upset, and brings the 'little girl' out to play!. Got fingers crossed that it will last, and we get another peaceful evening
We have had a lovely, calm period since Tuesday night There have been delusions - she was a bit annoyed that she had left 'that thing' at day care, 'that thing' apparently being the 'little man on the chair' (?), for example, but noticiable by their absense, no mention of 'babby', 'little one' or 'little girl'. We've had very little in the way of sundowning, either - I think she has maybe mentioned 'home' 3 or 4 times, and been very easily distracted
Until yesterday - she got up in a lovely mood, but wanted multiple breakfasts - definitely had the 'munchies', something I've grown to associate with her getting agitated. However, her mood was great, so we stuck to the planned taking her out for new clothes (need to replace all her button up tops, she just can't manage them ), and then on to visit her friend and old neighbour in the afternoon. The confusion seemed to get worse whilst we were at her friends, and on the way home, she started with the queries about where the 'little one' had gone This quickly moved onto would OH take her home tomorrow, and the 'Babby' then emerged as we pulled onto the drive. Last night we had the 'home, home, home' demands, though they were not as bad as they can be, that awful 'tight' and determined look was on her face, and you could see she was getting angry. Thankfully, it didn't escalate too much before she headed for bed, and aside from needing to be reminded where her bedroom was at 6 a.m., there were no distrubances otherwise.
But, I am 100% certain now that these references to children are something very closely associated with her being stressed or agitated - an 'early warning signal', almost, along with the increased appetite. And those two 'signs' often emerge before we hit the extreme agitation - so maybe knowing this, we can find a way to help her? Perhaps, rather than the regular doses of drugs to try and keep her calm, which she inevitably seems to become resistant too, leading to changes or increased doses, there might be a way to cut the meds down and only give them when we see the warning signs? That has to better for her, surely? Its worth talking to the CPN and her consultant about, anyway
She is still in bed at the moment, wondering if she will have calmed over night, or if we are in for another rough period?
There have been delusions - she was a bit annoyed that she had left 'that thing' at day care, 'that thing' apparently being the 'little man on the chair' (?), for example, but noticiable by their absense, no mention of 'babby', 'little one' or 'little girl'. We've had very little in the way of sundowning, either - I think she has maybe mentioned 'home' 3 or 4 times, and been very easily distracted Until yesterday - she got up in a lovely mood, but wanted multiple breakfasts - definitely had the 'munchies', something I've grown to associate with her getting agitated. However, her mood was great, so we stuck to the planned taking her out for new clothes (need to replace all her button up tops, she just can't manage them
), and then on to visit her friend and old neighbour in the afternoon. The confusion seemed to get worse whilst we were at her friends, and on the way home, she started with the queries about where the 'little one' had gone This quickly moved onto would OH take her home tomorrow, and the 'Babby' then emerged as we pulled onto the drive. Last night we had the 'home, home, home' demands, though they were not as bad as they can be, that awful 'tight' and determined look was on her face, and you could see she was getting angry. Thankfully, it didn't escalate too much before she headed for bed, and aside from needing to be reminded where her bedroom was at 6 a.m., there were no distrubances otherwise.But, I am 100% certain now that these references to children are something very closely associated with her being stressed or agitated - an 'early warning signal', almost, along with the increased appetite. And those two 'signs' often emerge before we hit the extreme agitation - so maybe knowing this, we can find a way to help her? Perhaps, rather than the regular doses of drugs to try and keep her calm, which she inevitably seems to become resistant too, leading to changes or increased doses, there might be a way to cut the meds down and only give them when we see the warning signs? That has to better for her, surely? Its worth talking to the CPN and her consultant about, anyway
She is still in bed at the moment, wondering if she will have calmed over night, or if we are in for another rough period?
That is odd Ann because mum has been somewhat calm isn't probable the right word but she hasn't been highly aggressive.
We also took mum out, husband and I, because she wanted to go to a particular event which was fine.
Though she was only there for half an hour then wanted a cup of tea and then home time. She used to spend a couple of hours there. She called my husband by my father's name until he reintroduced himself as her son in law.
On giggle humour mum sat in the front of the car and she very kindly read out every road to my husband while he was driving.
We also took mum out, husband and I, because she wanted to go to a particular event which was fine.
Though she was only there for half an hour then wanted a cup of tea and then home time. She used to spend a couple of hours there
. She called my husband by my father's name until he reintroduced himself as her son in law. On giggle humour mum sat in the front of the car and she very kindly read out every road to my husband while he was driving
.
Very odd, that we both get relatively 'calm' periods at the same time, Terry - I wonder why?
Mil's staying power definitely very poor these days too Going shopping for clothes, a year ago, would have meant 2 or 3 hours at least, browsing for what she wanted - nowadays, I know that's not an option. I actually looked on line at a couple of shops she favours in advance, chose one that seemed to offer the most suitable options, and we were less than 45 minutes in there, and even then, I think she had had enough. And within 10 minutes of leaving the shop and whilst driving home, she was telling me she could do with some new clothes and did we have time to go shopping, before we went to the supermarket!
Lol at the driving instructions Mil only ever seems to notice signs if they happen to be the name of an area close to where she used to live - and then we get - 'Oh - why don't you drop me off at home, being as we are so close'
Mil's staying power definitely very poor these days too
Going shopping for clothes, a year ago, would have meant 2 or 3 hours at least, browsing for what she wanted - nowadays, I know that's not an option. I actually looked on line at a couple of shops she favours in advance, chose one that seemed to offer the most suitable options, and we were less than 45 minutes in there, and even then, I think she had had enough. And within 10 minutes of leaving the shop and whilst driving home, she was telling me she could do with some new clothes and did we have time to go shopping, before we went to the supermarket!Lol at the driving instructions
Mil only ever seems to notice signs if they happen to be the name of an area close to where she used to live - and then we get - 'Oh - why don't you drop me off at home, being as we are so close'
I wonder how come she can still read but rarely can tell the time nowadays? Mr Terry was very appreciative of the half hour of directions.
Mum did read out a newsletter from a collectors group she used to be involved in which said "talk to mrsterryn mum she has extensive knowledge of the subject". Mum then told me it was me keeping her from that (no idea what "that" was and also the article was written in 2006)
Mum did read out a newsletter from a collectors group she used to be involved in which said "talk to mrsterryn mum she has extensive knowledge of the subject". Mum then told me it was me keeping her from that (no idea what "that" was and also the article was written in 2006)
I'm unsure about Mils ability to read, to be honest - its another thing that seems to vary from moment to moment? Short sentences seem OK most of the time - she can read the title of a programme, or a road/shop sign (but oddly struggles with menu's if we eat out ) - anything longer, and I am not sure if she isn't recognising words, not able to remember the beginning of a whole string of words so can't follow whats written, or just doesn't have the concentration skills anymore to focus on anything longer? Time - mostly, she can manage the time, but not with a 24 hour clock - 15.30 to her is 5.30, not 3.30, for example. But, she does get confused between 8 at night and 8 in the morning, for example, at times.
I used to wish for the ability to mind read when the kids were small and not able to express what they meant - but would expect me to understand. That goes double for trying to work out what Mil is trying to tell me a lot of the time, these days! Would be nice to really know what we were being blamed for, and why, sometimes!
I used to wish for the ability to mind read when the kids were small and not able to express what they meant - but would expect me to understand. That goes double for trying to work out what Mil is trying to tell me a lot of the time, these days! Would be nice to really know what we were being blamed for, and why, sometimes!
Do you know, reading these posts....I am wondering whether or how much mum can read!! I hadn't really thought much about it as she's never read books for pleasure. But increasingly, she will open a letter and leave it on the table, and when I casually ask, "oh, what's this?" She has no idea. Also doesn't know what her milk bill says, doesn't read the village newsletter any more....When I say that a given event is on her calendar, she says "oh, is it?". I was putting it down to memory but I think it may be more than that. After all we need memory to remember the skill of reading....
We will see. She has the Memory Clinic tomorrow so that may provide some clues.
How could I have missed this??
All the best
Lindy xx
We will see. She has the Memory Clinic tomorrow so that may provide some clues.
How could I have missed this??
All the best
Lindy xx
Its complicated a bit for us because we do know that Mil has a cataract in one eye that 'isn't bad', but in the other eye, they are considering surgery, and I don't know how much of an impact it has. I've seen her look at a letter and say 'Its addressed to me', but then said she can't 'make out' what the content says - so she can see well enough to recognise her name, and she has even commented that she doesn't understand why our address is on a letter addressed to her, but not manage anything else ? The more stressed/agitated she is, the more likely she will struggle with being able to concentrate on anything at all, so I guess that doesn't help either. Is it concentration that is a problem for you, Sue?
Lindy, I so often read posts on here and think 'Oh - Mil does that!' but the significance has only hit as I have read others comments. Really hard, I think, to step back and notice every little variable and change when you are in the thick of caring x
Lindy, I so often read posts on here and think 'Oh - Mil does that!' but the significance has only hit as I have read others comments. Really hard, I think, to step back and notice every little variable and change when you are in the thick of caring x
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
- 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
