So bizarre !

[Ann Mac]

Mil rattling at the door before I finished showering - one of these days, I'll get the timing right! Found a soaking wet pull up in bath, so the wet bed was more than expected, sadly

She came down, all doom and gloom again, I sat her at the table with a cuppa and went to make the requested porridge, only to hear Mil exclaim 'Oh S***' - I called out to ask whats was wrong? 'Its not a chocolate biscuit' she replied in disgust - I walked out of the kitchen to find her attempting to bite into one of my lens caps!

 

[jugglingmum]

Will be a long day, sleepover boys only went to sleep around midnight, although not up to 8.30 and friend is here until about 5. They've had pancakes for breakfast (today is b'day) and gone to walk the dog - with a backpack - so gone den building. Bike ride to a lunch at cafe planned and then OH and dau should be home from Glasgow.

Ann - a lot of what you say about your MIL before she moved in with you is how my mum had become before she went into the assisted living. She had lost a lot of weight then and forgotten /couldn't be bothered to eat. She was only eating very small portions but has put weight on since. I don't think this is the weight loss now, I think it might be she isn't hungry, carer's notes said she is up and dressed when they get there, which she hasn't always been and she seems really alert and with it and in a good phase. Flat is being kept tidy, both by mum and the fact she is allowing carers to clean which she wouldn't before. The only real sticking point at the moment is the lack of showering. Buying the clothes actually meant she joined in with the clothes sale, she went through a phase when she wasn't joining in as much, but she joins in with most of the activities, not Bingo or music but she wouldn't have done those pre dementia either. She had a couple of jigsaws on the go and was really upbeat in total so perhaps I painted a worse picture than it is. Her tablets are locked away and given to her by the carers and notes say they always watch her take them. She currently has a 5 hour a week care package and pays separately for a 1 hour domestic(by same care team). The care can go up to a max of 20 hours a week (although no night time 10pm to 6am) plus separately paid for domestics. And care manager who is on site Mon to Thur has assured me they will do their best to keep her there and not in care. Most of the carers she has really like her, and whilst they rotate the advantage of on site care team is they are the same ones in total. She sees care manager as an authority figure and knows she will be told off by her if flat messy. I think some of issue with cleaning is she doesn't like them there when she is but they aren't allowed to clean if she isn't present!

I have written before I think the lack of showering may force a care home sooner than later - I only have very limited time in the week between work and kids. I was surprised how well she settled into the 'rehab' care home in Jan, she enjoyed the routine and company so I also think I will consider a care home if she stops mixing. I know she has a chat with the carers, in a 15 min care visit when they only have to administer tablets they seem to have plenty of time to chat. Advantage of care team on site.

hope all have a good day - sparmar enjoy LA.

 

[Essie]

Hello all, bit of a flying visit but just wanted to say enjoy LA Spamar, I shall think of you having a lovely relaxing time, hope lunch was good Ann (it sounded yummy!) and that drive to Manchester is hassle free.

JM I would say there are certainly advantages to residential care - 'independence' is always held up to be the one thing we all want, need and must maintain but for some it is a burden and they are much happier when they are in a more constructed environment - meals at the same time each day, a regular time for shower/bath, regular activities - the routine is a relief as it is reassuring and calming to not have to make decisions all day long or be too long with only your own company and thoughts. A huge decision and a way off yet for your Mum I'm sure but not necessarily entirely negative as it is so often viewed.

 

[Spamar]

Ann and JM. On the way up here I passed a done-up VW. Please, please, please stick to red! The one I saw was butter yellow and looked like a block of butter on wheels! Ghastly!
PS, cakes living up to expectations!

 

[Ann Mac]

Morning all,

Don't worry Spamar - Old Red is staying red, we've even had paint mixed to match her original shade Out yesterday, we saw a newer version of a VW camper, that was actually beige - not nice, at all! Hope you are having a lovely time at LA and glad to hear the cakes are being enjoyed

Hope your son enjoyed his birthday, JM - sounds like it got off to a good start with pancakes Sorry if I misunderstood about your Mum, hun - just some of the things in the first post sounded so familiar - though with Mil, you had to add in, in the last couple of months, sundowning and delusions, which were the major reason for an end to independant living for her

Clean plates all round with the lunch Essie, so I'm guessing the family enjoyed it at least

Mil seemed to spend all day flapping about one thing or another, for the most part, with the delusions flowing thick and fast. Stupidly, we talked about taking oldest back in the afternoon in front of her and that led to about 3 or 4 hours of her constantly wanting to put on her coat, re-apply lipstick, change into shoes, change her clothes and ask 'are we going yet' over and over, as she thought we were leaving right now to go on holiday, go to the dance, go to pick up 'the lads', go to take daughter to airport, going to a show, etc., etc. She couldn't sit still and couldn't go for more than a minute at most without asking the same questions over and over, calling me from the kitchen in a panic-stricken voice to ask did I know where her bag was? Or where had I put her new dress? She kept looking for a long list of non-existant items, asking me where I had put them - eventually, when she started on about a book that she had 'promised to lend' to oldest, I explained nicely that I didn't know anything about any book. She called to daughter in the front room, and daughter very nicely explained that no, it was OK, she hadn't asked to borrow any book - and Mil called the two of us liars My patience was wearing very thin at this point and I called OH and told him he had better deal with her for the next hour or two before we left as my ears were ringing!

Eventually into the car at about 4pm and off, and Mil kept up a stream of 'will we miss the plane?', 'Where's that other lady gone?' 'Will the lads be ready for us?' - at one stage, from what I could hear, she seemed to be telling oldest that we were going to Manchester to pick up her Granddaughter! She thought we were going to London, to Limerick and worried where the cases were. After we dropped daughter off, and Mil got tearful about saying goodbye, within maybe 3 minutes of us driving off, Mil had a completely different story in her head about where we had been and why - when OH reminded her we had just left oldest at her digs, that she was going back to uni, Mil was most indignant that no one had told her that her oldest granddaughter had been home - because (Mil said) she certainly hadn't seen her. Then all the way home it was comments like 'Limericks changed a lot from last time I was here', 'Oh God - we've left the little lad behind!', 'S*** - turn back, we havent got all the cases!', 'Ann - we forgot to check the apartment before we left!', 'Wheres the bag of shopping that i bought?'. On and on and on and on , one thing after another and barely pausing for breath in between.

Back home I did a quick, light tea and all the while she wittered on, with the dreaded 'home' appearing and her getting increasingly naggy and rude. Every 60 seconds 'S*** - are you taking me home now?'. OH would explain ( through gritted teeth) that her house was sold, that she lived here and each time she would say that she knew that, but she has another house that we 'know nothing about' and she wanted to go back there. Her language got worse, her attitude got nastier - and by 7.30, less than an hour after we had returned home, she had been told, very firmly, to go to her room. She refused initially and told OH where to go in very unladylike language, but when he stayed firm, up she went and got into bed. We worried that we would almost certainly have a bad night with her sleeping so early, but at that point we really needed the peace and figured we would risk her going an hour earlier. At 8.30, took up meds and made sure pull ups were on, she settled straight back down - and other than guiding her back to her room from the bathroom around 3a.m., we haven't heard a peep all night.

Housework, paperwork and drooling on the agenda for me today Drooling over the camera I ordered last night, that is, which should get here tomorrow or Wednesday - I really need a second camera for weddings, as back up and for when quick lens changes are needed (a second camera fitted with the alternative lens would be a Godsend at times) and after much discussion and because we are not wealthy, made the decision to go for a second hand full frame DSLR - so I have a 5D mk1 on its way to me. A few scuffs on the body, but in excellent working condition and I am so excited - I've wanted a 5D for 2 or 3 years and though the latest version (seling at just over £3,000!) would be ideal obviously, I am more than happy with the older version I now have - can't wait to get it and try it out.

Hope you all have a good day xxxx

 

[Grey Lad]

Hi AnnMac I always find your posts interesting and helpful as I try to put things into context here. Your MIL lives in a very busy household and tiredness is a real issue. It is easier here as it is mostly the two of us. However, I still find it difficult to know when to try to motivate Maureen to do things rather than let her 'rest her eyes'. I am beginning to wonder if being asleep is the only time Maureen really gets a rest from this awful condition. Who could begrudge her that?

 

[Ann Mac]

Hi AnnMac I always find your posts interesting and helpful as I try to put things into context here. Your MIL lives in a very busy household and tiredness is a real issue. It is easier here as it is mostly the two of us. However, I still find it difficult to know when to try to motivate Maureen to do things rather than let her 'rest her eyes'. I am beginning to wonder if being asleep is the only time Maureen really gets a rest from this awful condition. Who could begrudge her that?

I guess I don't think of our house being busy - to me its just 'normal', but yes - you are probably right, to Mil it must at times seem busy OT's and CPN's have advised me to encourage Mil to do as much as she can, to encourage activity and to do things for herself, but over the last 12 months Mil's ability, energy and motivation have just gone massively downhill and heading off excessive distress tops the priority list. I ask her to do things, I suggest things for her to do - but if she declines, I don't push it now. And like you, its occured to me that while she is sleeping, she is free of the agitation and fretting that makes up a lot of her waking hours - so, at the moment, if a very early bedtime is what stops the excessive upset then as long as it isn't leading to disturbed nights for her and us, its the way we are going to go. Being honest, it isn't just Mil that its probably benefitting - having a longer period in the evening where we can relax is nicer for us too!

 

[Grey Lad]

I guess I don't think of our house being busy - to me its just 'normal', but yes - you are probably right, to Mil it must at times seem busy OT's and CPN's have advised me to encourage Mil to do as much as she can, to encourage activity and to do things for herself, but over the last 12 months Mil's ability, energy and motivation have just gone massively downhill and heading off excessive distress tops the priority list. I ask her to do things, I suggest things for her to do - but if she declines, I don't push it now. And like you, its occured to me that while she is sleeping, she is free of the agitation and fretting that makes up a lot of her waking hours - so, at the moment, if a very early bedtime is what stops the excessive upset then as long as it isn't leading to disturbed nights for her and us, its the way we are going to go. Being honest, it isn't just Mil that its probably benefitting - having a longer period in the evening where we can relax is nicer for us too!

To use a phrase that I am not fond of: 'I know where you are coming from'. I always answer those addicted to such speak with: 'I came from Coventry'.

 

[Essie]

I am beginning to wonder if being asleep is the only time Maureen really gets a rest from this awful condition. Who could begrudge her that?

That is so well put GL and you make a really good point about being 'busy' - we view it as a good thing, maintaining stimulation and involvement but for someone's who's mind is so 'busy', because I do think that is a factor in dementia, perhaps calmer and quieter is better.

Do you think the 'hustle and bustle' of a normal family home and even the comings and goings of the CH might be 'overstimulating' now for Mil Ann? triggering lots of 'associations' Limerick, the airport, cases, etc etc? I do often think that with dementia it's quite a lot about emotions and associations - our LO will feel an emotion, from whatever trigger and then, because the immediate short term memory capability is gone so the original 'trigger' is immediately lost they try and fit a thought or experience to it - if that's makes any sense.

I think increased amounts of sleep will be a good thing for Mil Ann, wasn't it Shakespeare who said "sleep knits up the raveled sleeve of care" or something like that.

 

[Grace L]

After a busy (busy for us) day, little outing, shopping trip, lunch, hospital appointment etc.....
my husband was more agitated when we came home , and sometimes even aggressive.

The CPN said that while we were out, my husband had to put a lot of effort into appearing 'normal' ...
He also had to concentrate when walking (had a stroke, still walked with stick) , and this requires a lot of extra effort. Talking to someone in a shop ... buying something... and not really being able to handle or understand money.... all of this was draining for my husband....


At home, it was always very quiet , no loud music (this annoyed him) , no kids running around,
quiet neighbours, even our street is very quiet.

Outside the world is full of noise, stimulation, cars / traffic, people talking....
My husband tried to listen into other peoples conversation, not realising he was not part of it....

I could not have the radio on in the car as this was too much to cope with, as well as moving fast (not fast, but moving in general), and seeing traffic fly by..... it made him panic.
Holding himself in a comfortable position in a car seat... even took a lot of effort ... and CPN said this added to his over stimulation... with the moving traffic.

When he / we came home he then had to check his (our) home was 'as he left it'.
He needed to check cupboards, rooms, to see if anything was out of place.
He was never settled when we came home....



MiL might just be overstimulated by day care (you don't really have a choice) ...

I've had a thought (sorry if I am speaking out of hand), I wonder if you could put a pedometer on MiL to see how much she is walking ? She might be walking 'miles'...



I was wondering ....
I wonder if 'Daycare' are saying to MiL when she starts asking questions, the baby is at home, don't worry?
So when MiL get home, she is looking for the baby....
If MiL has been asking day care, over and over where the baby is.... they might be fobbing her off (to stop her taking) , and say baby is at home...

 

[canary]

That is so well put GL and you make a really good point about being 'busy' - we view it as a good thing, maintaining stimulation and involvement but for someone's who's mind is so 'busy', because I do think that is a factor in dementia, perhaps calmer and quieter is better.

Do you think the 'hustle and bustle' of a normal family home and even the comings and goings of the CH might be 'overstimulating' now for Mil Ann? triggering lots of 'associations' Limerick, the airport, cases, etc etc? I do often think that with dementia it's quite a lot about emotions and associations - our LO will feel an emotion, from whatever trigger and then, because the immediate short term memory capability is gone so the original 'trigger' is immediately lost they try and fit a thought or experience to it - if that's makes any sense.

I think increased amounts of sleep will be a good thing for Mil Ann, wasn't it Shakespeare who said "sleep knits up the raveled sleeve of care" or something like that.

Essie, that seems to me to make complete sense. I remember, Ann, how you described going to a pub for a drink after picking MIL up from day care and how she sat in the garden enjoying the peace. Perhaps less stimulation reduced the need to "explain" everything in her mind.

 

[Grey Lad]

I feel like eating my words on the need for a quiet life.. Maureen has had a great morning listening to the carer's stories of her Hen Weekend. We also gave her lunch. Maureen washed the pots and said: 'they will all be wanting lunch here next'. She's sleeping it off now and that may be it for the day.

Seeing Maureen 'so up for it' and enjoying the moment made it all worth while: G L the chef had a very busy time. I think tiredness may well return for a day or two as our celebrations have taken so much out of Maureen. Still Chloe has been like a daughter to us so she deserved a treat and I am sure she will pay us back ten fold.

 

[RedLou]

So glad you had a good morning Grey Lad.

 

[Ann Mac]

Morning all,

You could all be very right about 'over stimulation' for Mil. But, for some time now, at day care, she has chosen not to remain in the section where 'day care' is actually based, but rather move to the residential area (which is fine by everyone) and she tends to flit around the lounges there. This means she isn't involved in a lot of the activities in the day care section, but rather is tending to sit and talk with one or two other residents or staff, watch TV or doze. Now and again, when she wants to, they encourage her to fold tea towels or arrange flowers or do any little job she is able to tackle - but I gather that this isn't something she wants to do a lot of, and day care pretty much go with what she wants on that one. About once a month, she takes advantage of the visiting hair dresser, and once a week (if she wants to) she goes to singing for the brain and, very occasionally, she goes out to a cafe at a garden centre, or there is 'entertainment' put on - though again, if Mil choses not to join in and rather remain in one of the small lounges, that's up to her. So, I think day care is as 'quiet' as its possible for a set up like that to be. From what I can gather, Grace, she rarely mentions the 'children/baby' when she is there - its all about her late husband, sometimes parents and often simply asking repeatedly for me or OH, wanting to phone us, panicking that we won't remember to come and get her or that we don't know where she is.

At home, although its true that she tends to get confused by activity, there's also a case for arguing that on days - like Sundays - when we generally don't have plans (especially as OH is in work alternate Sunday's) she can almost be worse. If there is nothing going on then she tends to almost 'dwell' on her delusions and what she refers to as her 'situation'.

Its hard to know what the right 'balance' is I think that there is a certain well meaning pressure or at least, an expectation, that carers should be encouraging their loved ones to do stimulating things, to keep active and engaged. But its a very indivdual thing, to the caree, as to whether that's always best or not.

GL glad you had such a good morning Hope the rest of the day continued as well for you both x

We had a really good evening here, too. Picked Mil up, told she had been 'fine' (as nearly always), no delusions, moans or tears on the way home. Back here, she asked once or twice could she do 'anything to help?' and I asked her to fold some towels from the tumbler - but each time, she didn't even get as far as folding one before she needed the loo and forgot about them, or told me she would do them later as she was tired now. She tucked into her tea and I waited for the kick off. Nothing. Not one mention of home all night. At one point she was certain that she had brought a girl of '10 or 11' with her (though I don't know from where?) and asked where she had gone, but she was realy easily distracted. A little later she asked about her late husband and I did the usual 'Have a think, Hun' - as usual it dawned on her that he had passed away. She asked - almost with curiosity, rather than any grief - when he had died. I told her 20 years ago. She was surprised because she was sure she had been talking to him 'last night' but realised that if he had died so long ago, she couldn't have been. She seemed to think for a minute and finally said 'Huh - you know what Ann? I think that doctor was right - I am starting to have problems with my memory' !!!

No upset or confusion about TV programmes, no nagging, no continual questions about where OH was, no jumping up and down to look for this or that or to do some imaginary task. Though she asked for her meds at 8.45, after taking them, she sat watching TV for another hour, apart from when OH came home and she spent 10 minutes peppering him with repeated questions, though not about anything upsetting. When she did go upstairs, no issues about the pull ups - in fact she thanked me for helping her 'sort them out' - and we haven't heard a peep since!

I never got round to finishing the paperwork yesterday, so that's first thing on the agenda today, though there isn't much (Thank Goodness!). I have to chase up a bride who still hasn't let me know what images she wants in her album and get that sorted - other than that, the usual housework and (today) ironing - and eagerly awaiting the delivery of the camera, hoping it does come today

Have a good day everyone xxx

 

[Grey Lad]

Thanks for your good wishes AnnMac. The rest of our day went relatively well. Maureen was obviously tired after our celebrations. I have spent a while this morning adapting to the new storage places. It may be sensible to accept that things are always going to be on the move an interesting merry go round of hunt the ....

I have given up on trying to find my Hudl. What on earth possessed me to buy it? I have a Smart Phone, Lap Top and Desk Top. A fool and his money eh? I am sure it was the 3 for 1 offer that did it. That T**** are clever they know how to take money off a G L who is partly 70. The only thing to decide is if Maureen really needs that mobile. You can guess where it came from: they had a 'double your vouchers' offer on. How could I resist?

 

[Batsue]

I have spent a while this morning adapting to the new storage places. It may be sensible to accept that things are always going to be on the move an interesting merry go round of hunt the ....

I know what you mean, cooking is always interesting here as I have to play hunt the equipment before I start, mum can't remember where anything goes and can be quite inventive.

 

[Grey Lad]

I know what you mean, cooking is always interesting here as I have to play hunt the equipment before I start, mum can't remember where anything goes and can be quite inventive.

Following Maureen's stroke we put labels on cupboards and that has helped. I am now wondering if moving things around is just something to do. A woman's work is never done?

 

[Ann Mac]

I too know what you mean about playing 'hunt the . . . .'! GL. One of the 'fringe' benefits of Mil now being strongly discouraged from doing anything in the kitchen is that I can at least find things in there when I need them! And it wasn't just 'hunt the whatever!' I used to use a knife block for all my sharp cooking knives, but Mil could never remember which knife went in which slot - on one occasion, and God knows how she had the strength to do it, she used sheer brute force to MAKE a couple of the knives go into slots that really were too small - they were firmly wedged and getting them out, I was lucky that I didn't slash myself to ribbons! We switched to a magnetic 'strip' that's fixed to wall, after that, to hold them all!. Biggest issue now is toiletries - we've had to put two shelves, that Mil can't reach, in the bathroom to accomodate things that don't belong to Mil, but that she will help herself to, and things that its best she doesn't get her hands on - I found a pot of foot scrub in her room which she informed me was the 'new face cream' that she swore she had bought at the shops that day - would have been so sore had she rubbed that into her eyes, let alone the mess it might have made of her face!

OH has a hudl, and absolutely loves it

Good morning here, a bit of flapping over lipstick (as per usual) and she had now decided to carry perfume in her bag, that she also applies multiple times before she goes out - and then she can't work out why she is wheezing away But other than that, she was really pleasant once we got the usual 'strip wash doldrums' out of the way Hoping for another good evening tonight

 

[Tin]

I know longer go to cutlery drawer, just go straight to one of mum's many pockets!!!!

 

[Ann Mac]

Morning all,

I know longer go to cutlery drawer, just go straight to one of mum's many pockets!!!!

Lol - sorry Tin - but that made me laugh

Another good-ish evening here, not quite as good as the night before, but still not bad. When I picked her up, one of the young carers told me she had been a 'bit' agitated, pacing and 'questioning everything' - I assume that meant they had had a bout of 'But why can't I go home?'. In the car, a 2 minute flap over forgetting the 'bag with all my clothes in', but otherwise fine.

Back home OH HAD to go finish off the job he was working on, on Old Red (more on that in a minute) leaving me with Mil. She wasn't bad, just a couple of edgy moments, firstly when she was adamant that she had to go and get ready to stay with 'that man'. She had no clear idea who the 'man' was, he came to see her 'last week', she thought he might be a nephew, but anyway, she had agreed to go his house for a couple of weeks - and was going now!. Took about 10 minutes to fudge, distract and persuade my way out of that one, but she seemed settled afterwards. Then an hour or so later, out of the blue - she knows she lives here but she was going home now, because she had changed her mind. I reminded her that she has sold her house, that she has lived here for nearly 2 years and she started to rant about how 'unfair' I was and how dare I arrange all that without speaking to her? Very firmly I told her that SHE had sold the house, that SHE had decided that living here was preferable to residential care and that I thought she was being very rude to me when I had only ever tried to help her. Amazingly, she deflated like a little balloon, though she tried a half -hearted excuse of she was upset because I had been rude to her earlier (?) - I told her firmly that I hadn't and she actually apologised, saying she had mixed me up with 'someone else'.

All calm and pretty relaxed then till bedtime. Went up to collect her 'clothes for the wash' -which is the excuse I make for following her up the stairs and for hanging around till she is undressed and in the pull ups -and did the usual 'Oh - I nearly forgot to give you these' and handed her the pull ups. She took them with a 'Thank you', put them on no fuss, but as I went to leave the room a completely unexpected comment , in a really nasty tone, about me 'enjoying' making her feel embarressed and probably shouting 'for the street to hear' about her having to wear the pull ups! I simply said that I had never and would never do any such thing and that I thought she was very rude for suggesting it - she got into bed and turned her back on me, so I wished her Goodnight and left. But - all quiet afterwards, ran into her on the landing at 5a.m., usual 'Ann - where do I sleep?', guided her back to her room - and thats been it!

Old Red now has the seals replaced on two rear side windows - but after yesterday, OH has said that he'll wait till the other windows fall out before he tackles that job again! He started work on her as soon as Mil had left for day care, and just before midday called son and I to 'give a hand' - after it taking less that half an hour to remove the windows and take off the old seal, he was struglling to fit the new seal and get the windows back in the van. Out we went, and time and time again, we failed to get the windows back in - we would get two sides and two corners fitted into the opening, which would then promptly 'pop out' when we tried to slot the remaining sides and corners in. I suggested that a dab of glue would hold the rubber sealant in place and make the job easier and OH (not in the best of moods after already spending 2 hours getting nowhere) dismissed my suggestion as 'wouldn't work and silly'. Over and over, we fitted the seal around the glass, then tried to fit the glass into the van only to have the seal 'pop' off. Finally, THREE HOURS after I made the suggestion, he tried the dabs of glue, just at the stress points to hold the rubber in place on the van while he then fitted the glass into it - and guess what? IT WORKED! Only by now, it was time to collect Mil, and Old Red was still minus one window which had to be replaced just in case we got more rain (we go from sunshine to heavy showers at the blink of an eye at the moment!) - hence OH continuing to work on her after Mil came home

So, today, I'm playing catch up with all the stuff I didn't get done yesterday due to flipping windows, and am just as glad that OH is off to work as I am that Mil is off to day care!

Hope you all have a good day xxx