1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

The agony and the occasional unexpected ecstasy of caring

Discussion in 'I care for a person with dementia' started by Andrew_McP, Jul 12, 2019.

  1. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    155
    Male
    South Northwest
    #1 Andrew_McP, Jul 12, 2019
    Last edited: Jul 12, 2019
    Pride come before a fall. I knew that even before I mentioned in previous discussions that I'd managed to keep Mum UTI-free for the best part of two years. Yes, I was kind of proud, because it's been something of an achievement against the odds. I knew it couldn't last forever, but I dared to hope it might.

    Turns out it's only 14 months since the previous infection. Time flies when you're having fun, eh? But last weekend, and possibly a while earlier, bubbling under, our luck ran out. Mum's got a pretty nasty infection this time, according to the doc who came yesterday, and it's not responding well to the normal antibiotics she's been on since Monday. A longer course is prescribed, so a longer slog ahead getting back to normal. Whatever normal is!

    It doesn't help that Mum's even more pill-resistant than normal, so it can take ages to finally get an antibiotic in. It also doesn't help that she's weary through constant disturbed sleep this week, making her more aggressive and also more vulnerable than normal. And tonight it definitely didn't help that I forgot to turn the hallway alarm sensor round as I went to bed, shortly after Mum.

    So when Mum got up, probably not more than an hour later, based on the usual pattern, I wasn't woken immediately. When she wandered through the living room to the small front hall in the dark, I didn't hear her. And when she somehow ended up kneeling on the floor facing the front door, with her head and knees on the practical but very prickly doormats, I didn't hear her.

    Not at first anyway. And possibly not for an hour or so, I dread to think. An hour's a long time in the life of a person with quite advanced dementia. But also, no time at all. Hopefully she'll be blissfully unaware when she wakes, just a bit stiff.

    Mum's asleep in a chair opposite me now. She was in an acute state of exhausted, dazed panic when her cries finally dragged me from my stupor. She still has mat-marks on her poor old knees, 30 minutes after I managed to somehow pick her up and drag her into a low chair. But at least she's off the floor, and if she's asleep she can't be too uncomfortable. I hope. And maybe my back will survive this episode. I hope!

    So the lesson from tonight is... a big sign goes up right beside my bed today. Turning the hallway alarm sensor around after my pre-bed ablutions is so much of a habit that I do it automatically now... except after five disturbed nights when all I'm thinking about is getting my head down before Mum wakes for the first of many loo trips. Easily done. At least the door was locked and I wasn't woken by the Police. Small mercies, eh?

    There we have it, the agony of the carer and cared for; physical or emotional, it all hurts. But life is not all pain... despite how it might seem some days. After I'd performed the last of several cushion-assisted lifts to get Mum into the chair, I stood back wearily and rested against the front door. In that moment of quiet calm I heard something strange outside... a snuffly squeak of impatient breathiness.

    Puzzled, I quietly unlocked the front door and was, for once, pleased by the harsh glare of the LED streetlight (come back, oh gentle sodium glow, all is forgiven!) Outside the front door, two hedgehogs were circling each other in hunty-grunty hedgehog hormonal heaven.

    At least, I like to think it was something like that. Maybe they were squaring off for a territorial fight, because they soon parted and went their separate ways into the quiet dark. Whatever they were up to, there they were, getting on with life as hedgehogs have done throughout the millennia, while on the other side of the door my poor old puzzled Mum got herself in a right mess and I snored my way into a potential crisis.

    There we have it, the ecstasy of remembering we're just a tiny part of this great big puzzle that is life... and then agony again when I look at the clock and see it's almost 4am. But in between typing this last part, Mum has roused, I've helped her to the loo, then back to bed. And we can now, hopefully, get back to a normal night... ok, morning, of up and down loo visits. It'll be a relative pleasure!

    At least now when I'm up for the umpteenth time at night I can console myself with the fact that Mum and I probably aren't the only ones shuffling about. Out in the garden, my new prickly accomplices in nighttime crimes against the body clock might be busy too.

    Sleep is, finally, calling. And so is the hallway alarm. Seconds out, round two!
     
  2. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    196
    Female
    Mid Lincs
    #2 RosettaT, Jul 12, 2019
    Last edited: Jul 12, 2019
    Andrew, I love reading your posts but I'm sorry for the cause of it and you and your mum are going through a bad week. Hopefully you can get your head down for awhile.
    Have you thought about asking for liquid antibiotics? My OH has to have them as it's almost impossible to get tablets down him when he has an infecton, it's the same with paracetamol . So far the cranberry juice seems to be working and he has been UTI free for the last 2months or so, some what of an achievement this year. He was averaging one almost every 3 weeks, it was a bit of a vicious circle. He's actually starting to recover more of his old self now. Initiating proper conversation rather than mumbling a response to a question.

    I hope your mum picks up soon.

    (((Hugs))
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,833
    Nottinghamshire
    I hope you and your mum have recovered from last night's adventure.

    I used to use a zimmer frame and an inflatable pouffe with an electric pump to lift my dad after a fall... But he did have to be able to co-operate for it to work.
     
  4. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Andrew, your post is poetic and beautiful. Thank you for sharing these moving thoughts x
     
  5. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    403
    @Andrew_McP - as always you write so beautifully. I hope you are collecting your observations, they'd make a wonderful book.
    Nothing practical to add, but I hope your mum's UTI clears pronto and you manage to get some sleep.
     
  6. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    155
    Male
    South Northwest
    Starting to reply here (several hours ago now!) was my morning lucky charm. Ok, so what drew me back was the typo in the first paragraph, but once I corrected that and started quoting some of your posts, Mum roused from her slumber after eating some crunchy Ryvita, butter, and jam and accepted a couple of important pills with minimal little fuss. She's now eating peanut butter on toast, which is turning 'breakfast' into a bit of a feast by her standards.

    Anyway, first a general thanks for your collective niceness. I write a lot of 'ghost posts' on here, trying to be practical then deciding I'm just going to make people feel even worse than they do already with my idea of 'help'. So I write a lot and delete a lot... hopefully it's my brain getting better at editing. Not that you'd guess that from the length of some of my posts. TLDR, as the youth (by which I probably mean anyone under 40 these days) would say.

    But sometimes, particularly when I need to confess my sins, I manage to scribble something I'm not too ashamed to finish and 'Post Reply'. So I'll take this opportunity to thank my hedgehog sponsors. It was a real delight to find they were still around, because -- another shameful confession coming up -- last autumn, while mowing a scruffy border to erase a summer of failed gardening, the mower hit something lumpy which turned out to be a hedgehog, starting its hibernation.

    Now, before your imagination paints a terrible picture, when I say 'hit' I'm not sure how badly. There was no evidence of damage and the mower was pretty clogged by a mass of rather tough-stalked crocosmia at the time. But the hedgehog was definitely moved, possibly by the build up of vegetation under the mower... he said, trying to reassure himself that he's not a careless monster.

    Mum loved crocosmia, but she looks right through them now they're coming into flower again, even though she loves anything red and the tall red ones have spread everywhere around the house. The row of flowers along the flower head always look like little sailing ships to me, bobbing against a sea of green. But that sea of wilting green had hidden poor old hedgie last autumn and I probably ought to have called a rescue centre or something.

    I didn't. The hedgehog was quite noisy when I tried to move it back into its little (protective I hope!) hollow, so I gently covered it up again with some dry vegetation, put a saucer of dogfood out close by, and covered the whole thing with a cardboard box to keep the rain off for a while.

    When I went back to check next day, the hedgehog was still there, breathing very slowly, and the food hadn't been touched. When I went back the day after, the hedgehog was gone, but the food hadn't been touched. So I never really knew whether my victim had shuffled off this mortal coil somewhere less disturbed.

    It's my hope that one of my visitors from last night is 'my' hedgehog. Whether it is or not, today's shopping trip will include some canned petfood and I can try to encourage them to stick around. Not that they probably need it. Mum created a real wildlife haven from nothing when she came here a decade ago, and although she takes no interest in it now, she created a great 'open prison' for me to be the warden of while I'm looking after her and her dog.

    The other regular inmates are a squad of four sparrows, who queue up on the fence if the feeder's empty of meal worms, one fairly tame blackbird who suns himself on the white bench while waiting for meal times, several big fat pigeons who I tolerate because they're cheeky, and a gang of five magpies that I don't tolerate because they wake me up at 4:30am arguing with each other! The neighbours must curse me, but the bird feeder at the window amuses Mum sometimes and unlike her, the neighbours can escape easily. :)

    Mmm... I get distracted easily when I'm tired. Sorry. Back to the whole point of opening up the laptop.

    Thanks for reminding me about liquid paracetamol, I do have some at the back of the cupboard. I haven't asked about liquid alternatives to other things, but the doc does know Mum's pretty awkward about pills when she needs them most, so I must ask. I suspect life will be complicated by Mum's allergy to several key antibiotics and her having a disproportionately tough but thoroughly compromised immune system.

    That was Mum's pattern too before we became complete bathroom buddies. Assorted cranberry/d-mannose products didn't seem to help her then, but maybe I'll try again, at least until we get our UTI confidence back. I've managed to get her to take a few of the cystitis drink sachets this time, so maybe she'll tolerate a bit of cranberry juice.

    Ah, cooperation... the carer's Holy Grail. When I was young I wanted a Ferrari Testarossa and Princess Stephanie of Monaco. Now I'd settle for Mum not thumping me and for her to take her darned pills. I need to have a stern word with Santa about delivering the right kind of dreams. I know I got the big yellow Tonka crane when I was 7, but life hasn't been the same since. I mean, there was that girl's bike Mum bought me when I was 10... what was that about?

    To be fair to Mum, I was a weedy, weak, chronic asthmatic until I was about 18 and she probably thought a step-through type bike would be very practical rather than a source of constant amusement to anyone who saw me on it.

    Now where was I, apart from being self-indulgently long-winded and nostalgic?

    Yes, this week I added a hospital type, slot under the chair, table to try and encourage Mum to eat properly rather than slumped back in her chair using her torso to reenact the Battle of the Somme. We already have a commode for sample collection. I think it might be time to add a zimmer frame to the 'shabby care home chic' ensemble. Mum walks fine without a stick, under normal circumstances, so I hadn't considered that a frame might simply be a very useful bit of scaffolding to have handy.

    Mmm... yes, I can imagine adding a winch/strap loop arrangement to a zimmer (or similar) structure that could support Mum while I slip a wide strap under her and winch her off the ground. The inflatable stuff the professionals use always looks superb as long as you've got a few folk to lift the faller onto the deflated cushion to start with, A strap padded with memory foam would be a lot easier to get her onto and she could lean back against the frame while I tightened the strap.

    I'm probably only a Google away from finding products like this are a stupid idea or already exist, but I'll guess that if they do exist it won't be a cheap solution. Of course something home-made, Heath-Robinson-style, would have to be safe, so... So I'm wandering into wondering. I'll have a look at inflatable pouffes though. However I will have to stop my unreconstructed self from searching Google for an inflatable Larry Grayson.

    That's very kind. My lifetime scribblings tend to be more escapist and Game of Thrones than memoiry and anchored in reality, but I can't resist a play on words. Given that so much of our lives here now revolves around the loo... :)

    Good grief, this really should have been a 'ghost post' replaced with a nice polite reply, but this and Mum taking her antibiotic are all I have to show for this morning, so I'll post it anyway.

    PS Mum is seemingly unharmed by last night, and untroubled by any memory of it. Sometimes dementia can be forgiving as well as cruel. She's asleep again now so I should perhaps be taking the opportunity to look at how to make a moggy-proof hedgehog feeder.
     
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,919
    Suffolk
    ‘Ghost ship’? Good local beer I’m told.
    When OH fell, two of my neighbours sorted him ( I’m arthritic, so it was neighbours or paramedics).
     
  8. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    155
    Male
    South Northwest
    I forgot that I stuck my phone out of the front door the other night, to record the noise. You can't see anything, but it really was that loud! And it's definitely two hedgehogs being annoyed at each other.

    https://photos.app.goo.gl/SFirDG12XY9y7qyt7

    In other news, Mum is no worse and no better. I've moved heaven, earth, and a small landfill's worth of wet wipes keeping her UTI-free for 14 months, and this was why... she is a handful at the best of times, and I definitely don't have enough hands for her when she's a muddled emotional wreck refusing all the help she needs to be less of an emotional wreck.

    Catch 22 is on TV at the moment. I haven't watched it, but I think I might be living it. Two chewed and rejected antibiotics this morning, and that was despite slipping her half a lorazepam buried in a fig roll earlier on. I've never had to resort to hiding before, and I thought she might detect a crunch, but she has no chewing teeth on the bottom of her jaw, just a row of 6 at the front (a partial denture was never tolerated by her when I tried with the dentist) so maybe that's working to my advantage.

    Shame I can't manage the same thing for a capsule of Nitrofurantoin which is large and has to go down intact. Fortunately though, a third capsule was accepted and swallowed ten minutes after the previous chewing. No idea what changed, but Mum's pill taking autopilot kicked in from somewhere and she just threw it in, almost rejected a drink, but then took a swallow and her head went back in the normal pill-swallowing action. It definitely went down and I was treated to a free flood of endorphins! Makes a change from being flooded with unwanted tea.

    Anyway, onwards and upwards. I made a crude cat-proof (I hope) feeder last night and some cat biscuits definitely disappeared overnight. Fingers crossed I'll have more luck keeping them healthy than I currently do with Mum! Mind you, they're obviously doing perfectly well without my help, so I can probably only make things worse. :)
     
  9. Moggymad

    Moggymad Registered User

    May 12, 2017
    338
    Female
    #9 Moggymad, Jul 13, 2019
    Last edited: Jul 13, 2019
    I have 2 hoggy feeding stations in my garden where food is safe from all but the slimmest of cats but if they are that thin then they need it! Don't forget the water. We see them coming from all directions for a feast. Mealworms are a particular favourite! The big ones just barge the smaller ones out the way. Arguments break out & go on for ages. The courting hoggies are usually noticeable by the male circling round & round the female both huffing with her taking the opportunity to escape as soon as she can. It's fascinating to watch the night time activities
    My mum cannot swallow antibiotics they just churn round in her mouth until they dissolve. Sometimes yoghurt or mousse can disguise them but the care home staff are limited in what they are allowed to do. Mums GP is aware of her need for liquid paracetamol but always prescibes antibiotic tablets. Nitrofurantoin no longer helps mums UTI's. You may need to ask if a dissolvable antibiotic is possible if you continue to have difficulties. Goodluck
     
  10. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    155
    Male
    South Northwest
    Last week I had a tray of water on the ground at the front because I saw a blackbird bathing in a bit of a puddle there. The following morning the tray wasn't where I left it by quite a few feet, and I'm wondering now if my hoggy friends had beem rearranging the furniture. Seems unlikely, but the blackbird certainly didn't do it. :)

    I imagine bits of mealworm dropping from the feeder near the front window may have been what was drawing the hedgehogs to that area. But while reading about what to feed them (I knew about the milk intolerance) I saw that mealworms are, apparently, a real problem. https://littlesilverhedgehog.com/2017/10/30/why-you-shouldt-feed-hedgehogs-mealworms/

    Ah, so maybe my pair were a bit hormonal after all. They were definitely circling.

    Given how little sleep I'm getting during this UTI, I might as well wait for Mum to get up while sitting at the living room window on hogwatch. But on the offchance I ever sleep again, I've just created a health & safety hazard in the conservatory by running the security camera at the back up the side of the house so it can *just* spy on the front to my feeding station. The camera records when it detects activity (such as when a leaf trembles or moth flies past, which isn't ideal when searching!) so hopefully I'll find out what's going on soon enough.

    If definitely ought to work for this infection, but reading around I see that its efficacy depends upon flow rate from the kidneys. I'll bear that in mind if things don't seem to be improving by Monday. We're always chasing a moving target with dementia. Sometimes it'd be nice if it'd just take a break so we could get our breath back! :)

    But life has a habit of throwing us a lifeline when we really need it, and at least now my disturbed nights can also be a source of intrigue and curiosity. At least until I get sick of lugging cat biscuits home.

    Thanks for your help, on both subject.

    Right, having rejected a proper meal, Mum' finally eaten half a bowl of fruit and custard. Now's my chance to get the night time antibiotic taken. Frankly I'd rather wrestle a tiger while playing seven simultaneous games of chess. It'd be less stressful. ;-)
     
  11. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    56

    I’m really sorry to turn this in to a Hog Post (although preferable to me than a Hog Roast) but I mentioned on the BBC Springwatch FB group that I fed our hedgehogs with mealworms (mainly bought for our resident Blackbirds) which were also voraciously consumed by - ok, yes, we call her Mrs Prickles - and this was the response I got from one of the SW team:

    “Mealworms aren’t recommended anymore. They have a poor calcium phosphorus ratio and can cause and painful and debilitating bone disease (metabolic bone disease). Over time it can affect the hedgehog absorbing calcium from other food and because they aren’t high in nutritional content they fill up on ‘empty calories’.”

    I’ve gone on to dry hog biscuits although this seems to have interested a rat ...

    I see so many references to UTIs on this forum and am not really sure how they occur, what tips carers off that the PWD has one and whether the PWD needs to present at a GP surgery each time on is suspected.

    Mum has that very familiar behaviour of dementia in that she will NOT shower and I do not believe her protestations that she washes herself properly. I am not sure she has ever had one but they seem so common in dementia that I’m worried I might not have realised. Any tips for what to look out for would be appreciated.
     
  12. Moggymad

    Moggymad Registered User

    May 12, 2017
    338
    Female
    Thanks for that information. Yes I had heard mealworms were not good so I have reduced what I put out. Hog biscuits & cat food are also provided & everything is gone by morning. I think we get occasional mice but our cat keeps an eye on that.
    In the early stages Mums didn't wash properly but I think for her the main cause was wiping herself from back to front. She would only drink tea. The uti signs were usually a need to visit the loo much more than normal often not really doing anything. Also sometimes a slight temperature & a urine sample was usually a bit cloudy & strong smelling. She became troubled in herself & would have increased incontinence. Did occasionally say she had stinging pain when trying to pass urine but not that often. I have seen lots of posts about UTI's & what other people have experienced so it's worth doing a search on that subject in this forum.
     
  13. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    155
    Male
    South Northwest
    My mother has probably only had four showers in the last year and every one of those has been a necessary struggle after severe soiling incidents I wasn't prepared to risk any other solution for. We'd already become 'bathroom buddies' by sheer necessity long before I started trying to help her with that side of things though, and it sounds like you're quite a bit further back down the dementia road.

    When my mother was still relatively high functioning (ok, apart from going out with her coat inside out and shoes on the wrong feet!) it became clear to me that she simply wasn't doing any wiping at all, and even if she was, it was back to front. So she was soon into a cycle of UTIs which were usually pretty obvious. Peeing very regularly, going back to the loo just after she thought she'd finished. Burning sensation when peeing which would make her wince or even cry out if it was severe. And of course because Mum is at the FTD end of the dementia lottery, her behaviour became even more angry, confused, and even delirious than normal.

    In most cases, before long Mum would be all but bed-bound with tummy pain and feeling unwell, but the advantage of that was that the constant discomfort made it "easy" to convince her it was necessary to take pills.

    The last few UTIs though, including the current one (which I have been suspecting for weeks even though the surgery didn't find a positive test) have been much harder to point to straight away. Mum's had on & off stinging when peeing, but no reported tummy pain (even now and she's definitely got a UTI!) and it's harder to identify raised confusion levels for a while because... well, that's every day now! However generally stroppiness eventually climbs to consistent abnormal levels. Some days it's relentless. And of course because the pain seems less (perhaps it's another part of the brain/nervous system that's failing) then Mum soon forgets after the loo that she's ill, which adds to the pill taking problems.

    Anyway, every dementia suffer's brain fades differently, and maybe your poor old mother still has pretty good awareness of toilet hygiene. You may not be in a position to check directly yet, but I overcame my initial awkwardness by checking Mum's underwear when any chance came along and by hovering by the loo if she left the door cracked open because she was in such a rush. I felt like a pervert, but dementia takes you to places where normal behaviour and rules have no place if you want to keep people safe. Someone inevitably has to become intimately involved in care, and every time I looked round there was nobody there except me and the dog, and the dog has a pretty high tolerance for poo, based on what she was sniffing earlier today.

    Anyway, my hovering habit meant that when I heard Mum getting really distressed in the loo because she was heavily soiled and struggling to work out what to do, I was able to offer help and -- eventually -- it was accepted. I'm a bit vague about how it actually happened, because it's well over two years ago now and maybe it's a bit like childbirth for women... your brain blanks things out to protect your sanity!

    Yes, well, once I'd been in the loo at a difficult time once, it became easier for Mum to accept me in generally, so we became bathroom buddies even though I expected that to be the last thing on earth she'd accept or I'd ever want. But it's the closest to a lucky break I've had on this journey, so I'll take it. It's made life so much simpler and restricted incidents like finding poo stuffed down the back of a chair. Wouldn't mind, but it'd been there a while and I only found it by checking for loose change. There was, thankfully, nothing loose about what I found, but I'd still rather have found a 1p rather than one poo. :)

    The lucky break I had earlier tonight though was finally getting the antibiotic into Mum. Half an hour of stop/start smiley trial and error eventually wore her out and it went down without drama, thank gawd. Which left me feeling rather happier and ready to type an essay... apparently. Of course given that I haven't had longer than about 90 mins of unbroken sleep for nearly two weeks I should probably be brushing my teeth instead.

    Good luck with your mother. In some ways you're at a harder phase than I am now. Early on, when many of the normal relationship rules stlll apply, and you're struggling not to overstep the mark, the dementia journey can be tougher than later on, in my experience. Except maybe this week!
     
  14. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    56
    Thank you, Andrew. I can confidently say that Mum hasn’t experienced a UTI - yet.

    Despite being diagnosed with vascular dementia in 2007, Mum, at 92, is still relatively high-functioning as you suspected. This summer though many of the classic dementia traits are being displayed more regularly and severely. Each one a punch in the stomach. One of the most frustrating is the complete absence of understanding time. I am no stranger to the front door alarm going off during the night and having to claw on some clothes and rush round (I bought the house next door 7 years ago, never dreaming I’d still be here in 2019) only to find her fully dressed (regulation three pairs of trousers and four tops - amazingly still colour coordinated ) making a cup of tea in the dark (she has macular degeneration) and completely unable to grasp that it is 2.30am or whatever god-forsaken time it is. When I get her back to bed, I return and, closely resembling an ironing board, lie staring at the ceiling until it is time to go and get her her breakfast. I often wonder if I could monetise this situation and start a career as a consultant on zombie movies. In other words, I empathise with your sleep-deprivation.

    Mum is five foot nothing, seven stones and nips around the house. She gets herself up and puts herself to bed but that’s about it. She only takes one tablet a day - thyroxine for an under-active thyroid. She is bored most of the time as she can no longer see to read ( her Kindle ended up on such a high font that there was one word to a page - even that has gone now) or do her puzzles or watch TV with any real understanding. A month ago she had her annual MOT and blood tests at the surgery. We were called in to be told that there is absolutely nothing wrong with her except the dementia and MD, her health is “remarkable” and she could live for another 6-7 years. So, yes, we are still a long way behind you and your dear Mum, All I know at the moment is, whilst she could go on like this for seven more years, I know I can’t so hard times are a-coming in more ways than one, I suspect.

    I shall watch out for the UTIs with a better understanding so thank you for that.
     
  15. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    56

    Thank you. I should have thought about doing the search myself - I often wonder if, like young mothers getting “baby brain”, I am getting “Mum brain”. She does often say she is going to the loo but she “probably won’t do anything” but as she has had constipation most of her life, I assumed she meant that. I will question her more closely.

    Every day’s a school day, as they say.
     
  16. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    155
    Male
    South Northwest
    I can still remember the exact moment I realised Mum couldn't understand the time or date any more. Suddenly all the complaints about missed buses and appointments made sense... and the world dropped from under my feet. Because I knew what this meant immediately. There had been concerns before (repeated stories etc) but you get used to it and the bigger picture gets lost.

    Well, I only have to lift my head to see Mum wander into the hall, with the loo opposite. Sometimes she'll even make it to the loo unaided and I can stay in bed a bit longer before checking she's ok and can find her bed again. And I had a decade in a flat with noisy neighbours above while I worked nights, so my body is conditioned to being woken abruptly. But you never get used to it, do you. There's a reason why sleep deprivation is used as torture... it's very effective!

    I have the same problem. Mum wanders back and forth finding things to move or empty or fill or break or tear apart. It seems to keep her occupied, but the only time she's otherwise occupied is when sleeping or out walking. She doesn't even seem to actively enjoy the walk, but it seems to give her a purpose in some way and it's exercise.

    At Mum's diagnosis three and a half years ago, the consultant gave us a very similar, 10-15 year outlook. It's a potentially very long slog for them and us, and sometimes I worry that the harder I try to care well, the more I prolong her decline; a decline she would be totally horrified to see. But such is life for carers... there's always something else to feel bad about. :)

    It's such a theoretically simple thing to deal with, but add dementia to the mix and life goes to complete pot immediately. There's no doubt though that being prepared is part of the battle. So, as awkward as it can be to share such things, if there's a chance my experience helps one other person searching these forums at some point, it's worth it.

    In other news: cat biscuits untouched last night and camera recorded only trembling clematis and moths. At least no cats or rats or meeces raided the food stash though.
     

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