Hi everyone I'm new, all about my stubborn mother

[Ray96]

I have been reading all your posts for quite some time so thought I would join up.

Mum was diagnosed with Alzheimer's Dementia 2 1/2 years ago but it all started off not long after my father died, I'd say she has had it now for 4 1/2 years. I have been caring for her on my own as have no siblings but recently she has entered a new phase that is becoming very difficult in the last month. She has always contradicted everything I say or do and been aggressive as well at times but now she is double incontinent and goes from extreme constipation to diarrhea, and insists on wondering around day and night with poo and wee dripping out everywhere because she pulls here pads down and out and hates anyone helping her or washing her, she screams and shouts when the carers come twice a day for personal care (they have been coming in two's for the last 2 weeks as they cannot cope with her on their own).

Four weeks ago I thought she would not be around much longer as she was refusing most food and liquids, but her GP said she is very strong, here blood pressure is normal, heart strong, lungs clear, she is skinny as a rake and yet she is indeed very strong but very confused now most of the time, or at least it would seem that way, anyway she started taking some liquids and food again about 2 weeks ago.

My question, if anyone can help, is why is my mother so difficult with everyone, just one example, I put towels down everywhere where she sits in case of spillage but she often insists on sitting where I have not put any towels or waterproof sheets, I'm following her around sometimes going mad because she sits down right in the place where there is no protection. She also wonders around in my room and sits on the bed but yet again this morning she would only sit on the nice white sheets at the end of the bed and not where I have put a big blanket at the other end of the bed, I try to move her and she goes crazy. I moved her once and she left the room, then I said please sit here when she came back in, but no, she's back sitting on my sheets so its not just her bed I'll have to change today, its mine too. She's now lying down on my bed eyes open and talking gibberish. She even manages to go on my PC pressing random keys to see what happens, but I don't mind that, what upsets me is her soiling the house and my bedroom! I can deal with most things but its her stubbornness that gets to me she does nothing to help me, not even hold a cup of water when I'm trying to get her to have a drink its like this; "put it there, put it there", all bossy. Then from nowhere she is kind for a while and this lasts for maybe 10%-20% of the day, its like she is playing me in a passive aggressive way.

My mother has always been controlling and this refusing food and liquids most of the time anyway (I have put her on Ensure plus now but she only had about 1 a day on average) and just basically doing what she wants all day long is the last vestige of her controlling mind. The carers that come in say that I should just let her do whatever she wants and to stay calm, which is what I do most of the time, but they don't have to stay with her 24 hours a day as I have done for the last 5 1/2 years with only a 1 week break in all that time. Also the carers are saying that I should not worry and that we are coping ok but I'm thinking of getting her admitted to hospital for an asessment because she can't carry on like this, she is probably dehydrated from the lack of fluids and that might be causing the psychotic episodes that seem to be ongoing most of the time, particularly her hearing voices and talking to dead people. She also sleeps with her eyes half open which is very strange.

 

[kindred]

I have been reading all your posts for quite some time so thought I would join up.

Mum was diagnosed with Alzheimer's Dementia 2 1/2 years ago but it all started off not long after my father died, I'd say she has had it now for 4 1/2 years. I have been caring for her on my own as have no siblings but recently she has entered a new phase that is becoming very difficult in the last month. She has always contradicted everything I say or do and been aggressive as well at times but now she is double incontinent and goes from extreme constipation to diarrhea, and insists on wondering around day and night with poo and wee dripping out everywhere because she pulls here pads down and out and hates anyone helping her or washing her, she screams and shouts when the carers come twice a day for personal care (they have been coming in two's for the last 2 weeks as they cannot cope with her on their own).

Four weeks ago I thought she would not be around much longer as she was refusing most food and liquids, but her GP said she is very strong, here blood pressure is normal, heart strong, lungs clear, she is skinny as a rake and yet she is indeed very strong but very confused now most of the time, or at least it would seem that way, anyway she started taking some liquids and food again about 2 weeks ago.

My question, if anyone can help, is why is my mother so difficult with everyone, just one example, I put towels down everywhere where she sits in case of spillage but she often insists on sitting where I have not put any towels or waterproof sheets, I'm following her around sometimes going mad because she sits down right in the place where there is no protection. She also wonders around in my room and sits on the bed but yet again this morning she would only sit on the nice white sheets at the end of the bed and not where I have put a big blanket at the other end of the bed, I try to move her and she goes crazy. I moved her once and she left the room, then I said please sit here when she came back in, but no, she's back sitting on my sheets so its not just her bed I'll have to change today, its mine too. She's now lying down on my bed eyes open and talking gibberish. She even manages to go on my PC pressing random keys to see what happens, but I don't mind that, what upsets me is her soiling the house and my bedroom! I can deal with most things but its her stubbornness that gets to me she does nothing to help me, not even hold a cup of water when I'm trying to get her to have a drink its like this; "put it there, put it there", all bossy. Then from nowhere she is kind for a while and this lasts for maybe 10%-20% of the day, its like she is playing me in a passive aggressive way.

My mother has always been controlling and this refusing food and liquids most of the time anyway (I have put her on Ensure plus now but she only had about 1 a day on average) and just basically doing what she wants all day long is the last vestige of her controlling mind. The carers that come in say that I should just let her do whatever she wants and to stay calm, which is what I do most of the time, but they don't have to stay with her 24 hours a day as I have done for the last 5 1/2 years with only a 1 week break in all that time. Also the carers are saying that I should not worry and that we are coping ok but I'm thinking of getting her admitted to hospital for an asessment because she can't carry on like this, she is probably dehydrated from the lack of fluids and that might be causing the psychotic episodes that seem to be ongoing most of the time, particularly her hearing voices and talking to dead people. She also sleeps with her eyes half open which is very strange.

Sweetheart, I am thinking that YOU cannot carry on like this, the strain must be dreadful. I'm not sure if we can get our loved ones admitted for an assessment, you couldn't do that in my area, they usually wait for an accident. But I am thinking that you need helping, not just by carers, but looking at this situation more long term and your health and welfare. I do know what the soiling does to you, it's the one thing most of us find takes it out of us an appalls us most of all. Please ask Social Services to consider your position, and go to the GP to tell him how hard you are finding this now.
You hve done so well for so long. warmest, Kindred.

 

[maryjoan]

I agree with Kindred - don't wait, do something now to help yourself - have you recently had a Carer's Assessment? Are Social Services involved? Ring your GP as an emergency on Monday morning, and say you simply cannot do this any more....... will he alert someone, anyone? If you make it a worse case scenario they will help you. I did - I have some help now, not enough, but some help......
You have to shout loudly to be heard in these economically stretched times...

 

[Ray96]

Thanks for your kind replies Kindred and mary joan, yes I will have to do something as its all become pure madness, like I'm living in a mental hospital. She holding herself very tightly with her head down, sitting on my bed and wanting to sleep but is so angry that she cannot sleep, I think its this anger problem that she has always had that is taking over, and you can't say anything to her because the anger just gets worse. When I tried to get her to her bed for a bit of a nap just now she dug her nails into me, not hard but just enough to let me know that I should leave her alone. You do your best, but its never enough.

She has started Mirtazapine so I'm hoping this might help.

 

[nellbelles]

Hello @Ray96 welcome to TP although I’m sorry you needed to find us.

It all sounds very difficult, maybe it’s time for SS to do a new needs assessment for your Mum and a carers assessment for you, it does look like you can’t carry on as things are at the moment
Now you have found us please keep posting so we can support you at this difficult time

 

[karaokePete]

Hello @Ray96, you are welcome here.

I agree with the others that you should seek further help. The Local Authority have a duty of care towards vulnerable adults and you should use these terms with them. I would also lay it on thick about you being on the verge of carer breakdown and now under threat of physical assault as they shouldn't ignore that.

The constipation can actually cause the following incontinence so addressing that with the GP may help. As to sitting on the only unprotected spots that could be a visual issue as maybe the protective covers are being seen as that space being taken.

There are some Factsheets that may provide some information to you and they can be reached by clicking these links
https://www.alzheimers.org.uk/sites...factsheet_continence_and_using_the_toilet.pdf

https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/changes_in_behaviour.pdf

https://www.alzheimers.org.uk/sites...assessment_for_care_in_support_in_england.pdf

https://www.alzheimers.org.uk/sites...the_gp_can_support_a_person_with_dementia.pdf

 

[Ray96]

Thanks nellbelles and Karaokepete for your messages. I just got here into bed, don't know how long she will stay there for though, when I went up she was trying to climb into my wardrobe, quite a struggle to get her to bed, she has also started to throw herself to the floor, often backwards, when you try to get her to do something, she tried this just now but managed to hold her up, god only knows why she is always fighting me.

 

[kindred]

Thanks nellbelles and Karaokepete for your messages. I just got here into bed, don't know how long she will stay there for though, when I went up she was trying to climb into my wardrobe, quite a struggle to get her to bed, she has also started to throw herself to the floor, often backwards, when you try to get her to do something, she tried this just now but managed to hold her up, god only knows why she is always fighting me.

Please, sweetheart, document all this, especially this throwing self to floor often backwards, this could be dangerous for her and become impossible for you to manage. Warmest, Kindred

 

[Andrew_McP]

First, well done for coping so far! I know what it's like to have a, er... strong minded mother, and dementia doesn't -- sadly! -- seem to strip them of that characteristic. It just seems to remove everything else which kept the determination and bossiness in check. Such is life... never resists a chance to kick you when you're down!

I try to remember that it's not her fault, savour the times when she's gentle and relaxed, and do all the compassionate communication stuff when she isn't. But it does often seem she's doing her very, very, very best to be as unhelpful as possible. I deal with that by backing off usually, but backing away from incontinence issues isn't practical or healthy for either of us.

I've been "lucky", somehow, in that I managed to get Mum used to me being generally useful in the bathroom. Don't ask me how, it was a gradual thing, but I knew from reading here in the early days that toilet issues are often what breaks a caring situation, so I took every small chance to help break down the normal barriers. It felt wrong or awkward at times, but caring isn't about normality, it's about necessity.

Getting Mum to start wearing disposable pants was a big breakthrough, which helped us get her constant UTIs under control (none for 9 months now, he said, tempting fate!) They handle routine urinary incontinence well. But although they can contain some poo (sometimes resulting in a nasty shock), they don't help her ability to try and sort herself out, requiring eagle eyes and an even eaglier nose for trouble. She is simply incapable of managing poo successfully and that just makes her even more distressed, so...

Well, I am probably ruining Mum's life and on a fast track to carer Hell, but once I realise we're heading for trouble (agitation tends to build, or she'll wander in and out of the loo while denying any need to go) I will make sure we get to the bathroom one way or another. I try to convince myself I'm channelling Hattie Jaques as matron rather than prison camp Gestapo, but I'm no angel and my mother's feistier than a bag of ferrets when she gets going, so it can be a challenge for both of us. But I work on the principle that as long as I constantly remind myself none of this is her fault I'm likely to stay on the right side of doing what's necessary to get her clean and comfortable again. She will be happier, just not right now.

Once we're in the bathroom the bath is ready to accept anything and everything that's contaminated, and as long as I can keep poo off Mum's hands (and therefore off me and everything else!) then I can usually manage. I always have instantly accessible rubber gloves, bin with liner (liner alone is no good if you're working one handed), big pile of wet wipes, scissors to cut off soiled pants if necessary, and disinfectant spray. And reserves of everything in case cleaning stuff gets contaminated!

Having dettol on hand can be useful because Mum still seems to associate the smell with cleanliness (it was the first thing out in hygiene emergencies, when we were growing up), but if I'm having to be firm with her there's nothing that helps except putting on that notional old fashioned matron's hat and getting on with it. I just stick to the script, make it clear there are no options other than getting cleaned up, get her sat on the loo as soon as possible (in case there's more to come but mainly to help her relax a little) and then it's down to establishing a clean zone on the floor and working outwards... starting with my shoes/slippers in case I'm making things worse!

Mmm... reading this back I find myself wanting to do what if done a dozen times in similar threads... delete the lot and stop outing myself as a manipulative control freak! But there probably aren't many carers who haven't felt the same, or struggled with the same issues, and if we don't share, we don't help. But if social services are battering down our door in half an hour, I'll know why!

Anyway, it seems I've hidden behind this laptop from my mother's grumpiness, for long enough for her to calm down and bring me a peace offering of a pencil. Usually it's a crumpled hanky or shredded artificial flower. But whatever it is, it's a good time to see if she could use a trip to the loo and then make a quick dash into town with her on the bus for dog food before the emotional winds change direction again.

Good luck. Hopefully the new meds will help your mother, and therefore yourself. It can be a lonely journey at times, but there's always someone here to listen, even if sometimes we struggle to find the right things to say.

Better hit 'Post Reply' before I delete this!

Oh, you mention your mother pinching you... boy, do I know all about that! Having abused the English language already I shall do so again. There is nothing eaglier than my mother's talons, bless her! I let her get some of her anger out that way, but bear the scars to prove that's not always much fun.

However neither's having dementia. She tolerated a bit of pain helping me into this world; the least I can do is tolerate some pain helping her at the other end of the journey.

 

[Ray96]

What a wonderful post there from you Andrew, thanks for that. I had a little break from things just now, carers came and gone, mums still sleeping, tried to get up, now back in bed again. Maybe I should get some kip since there is literally no way of knowing when she will be up and about again in the night.

I wish I could be as patient and organised as you are.

 

[AlsoConfused]

I don't know whether it's practical - but in your shoes I'd be absolutely desperate to protect my bedroom and bed from dirt and invasion.

A large piece of black fabric / foil running across the hallway in front of your room (too big for your Mum even to consider jumping across!) might persuade your Mum to stay away from your bedroom, believing there's a dirty great hole barring her from it. Obviously you'd have to avoid letting her see you "navigate" this scary chasm - because she might copy you.

If your Mum couldn't get into your room because of new locks on both sides of the door (out of her line of sight, would she come to believe that the room simply didn't exist any longer?

 

[Andrew_McP]

Maybe I should get some kip since there is literally no way of knowing when she will be up and about again in the night.

It's the only way to survive, sleep when you can, not when you want to! But that's easier said than done when the only time you get to be yourself is when the person we care for is sleeping.

I wish I could be as patient and organised as you are.

You're reading the edited version of my life, remember. Nobody's as good in reality as they are on paper.

But I guess that after helping my mother every step of the way from initial concerns, to diagnosis through to now, there's a slim chance I have half a clue what I'm doing. Otherwise Mum wouldn't occasionally take me on one side and tell me how much nicer I am than 'that other man' who's so horrible to her.

[Pause to make fruit and custard.]

My mother has become a very fussy eater too in recent months. She was often hard to please, but I could usually get her to eat 'properly' at least some of the time. Now I'll settle for her eating anything at any time, and she was just hungry so I took the opportunity to 'bury' a load of finely chopped fruit in some instant custard. If I don't chop it finely she tends to pick a lot of it out, and if I mush it up too much it affects the flavour and she's suspicious.

Which reminds me, I meant to pick up some Complan or similar to see if I can sneak it into instant custard. I already keep some long life 'Elmlea' type cream substitute, and bolster the custard with that; makes it a bit more like the Ambosia carton stuff. I also discovered Mum will eat Crunchy Nut Cornflakes sometimes, and cream in with the milk seems to go down well. (Reminds me of the distant days when we had milk delivered and us kids would have to fight the bluetits for top of the milk on our cornflakes.)

On some days though it's all I can do to get Mum to eat some ginger nut biscuits or Jamaica Ginger Cake... strong flavours that usually cut through her apathy. Smoked mackerel sometimes works, and I can flake that into some mixed veg where the overwhelming flavour makes the veg more palatable. But often it's just a case of trying bits of this, bits of that left out 'conveniently' for her to stumble upon. However I then have to keep an eye on the dog, to stop her getting fed instead. And then of course there's Mum's habit of stuffing anything from unwanted mug of tea to half her dinner down the back of the drawers in her bedroom. That's fine as long as she hasn't put my wallet down there first.

Every day is a challenge, eh? I try to treat it like a gameshow, with one puzzle to solve after another while rubbing your head, patting your stomach and standing on one leg. But it still feels more like torture at times... so maybe it's a bit more like those crazy, masochistic Japanese gameshows they used to show clips of on TV.

There's no prize though, just the knowledge that you tried your best, whatever 'best' means! And of course, no matter how messed up and confusing it is for us, it must be ten times harder for them.

It's funny though, as bad as it is when Mum's screaming at me because I won't let her smear her poo-laden fingers all over me in the bathroom, it's not those times which make me saddest. Recently we had a leak from the bath's hot tap, and it took me ages to work our why the kitchen door was catching on the floor, then trace the problem back. During that period of drying out I left the mop out and since then Mum's adopted it. Sometimes to clout me with (it's less painful than her claws!) but mostly she wanders up and down the bungalow with it, dabbing away at the floor, doing some kind of imaginary cleaning.

On one level it's nice that she's occupied.... it's usually hard to get her interested in anything except rearranging the contents of the house, dismantling anything breakable, or walking "home". So I always compliment her on doing such a great job. But at the same time, seeing her like that can make me cry... such a strong, independent woman brought so low by dementia. By some measures, at times like that she's "living well with dementia". But it's not a life any of us would wish on our worst enemies.

As I say, sometimes it's easier to deal with the worst times. At least then you're too busy to think, and there's a period after where Mum's exhausted and I'm just glad the worst is over for now. Perhaps it's only then that, briefly, we have a period of mutual contentment.

Mmm.... right, so, that was a load of old waffle, wasn't it! But I forgot to say that you mentioned diazepam in your earlier post. I'm too lazy to double check, but I'm sure diazepam is relatively weak. I sometimes have some for Mum to help when her neck plays up (a lifetime of hairdressing left her with the neck equivalent of sciatica, which can make life highly unamusing for weeks on end several times a year) and although it's supposed to be a relaxant, it's never had any noticeable effect on her.

Lorazepam, on the other hand, which she was prescribed when she first developed anger management issues 2.5 years ago, can be very effective indeed... if I can get her to take the darned stuff! Half a mg sometimes bounces off, but 1mg has always (so far) sent her to sleep within half an hour. When she wakes (sometimes soon, sometimes hours later) the anger spell has always been broken and she's calm again until... well, until dementia says breaktime is over.

It might be worth mentioning this to her doctor. I don't resort to lorazepam often, for fear of Mum getting used to it (and because I often feel it must be my fault things got out of hand). But sometimes it's a lifesaver.

Ok, wall of text ending here. Time for a glug of Tesco's cheap Bailey's in my cocoa while the house is quiet.

 

[Ray96]

Oh dear, I just wrote a long post but got logged out so I have lost it all, does happen often on here? I'm not very fast at typing.

I'll just say that it seems to me Andrew that you are doing a very fine job there with mum.

 

[Andrew_McP]

does happen often on here? I'm not very fast at typing.

I find this forum one of the better ones, and while you're typing you'll sometimes see 'draft saved' in blue pop up in your reply box. That draft is usually still available even if you return to finish a reply later, so I'm not sure what happened to your text. Frustrating losing a reply. My usual mistake is selecting a load of text by accident and deleting it by mistake by overtyping. That can usually be retrieved by using the undo feature.

Anyway, to late to help you now. Maybe that'll help next time.

seems to me Andrew that you are doing a very fine job there with mum.

Very kind of you to say so, but I think we all suffer from guilt and anxiety, whatever we do. It's a carer's constant companion! I just hope I can still be as stoic when my mother gets to the stage your mother seems to be at. There comes a time though when there's no shame whatsoever in admitting you need a lot more help. I think you may be there, and I wish you all the best finding the best way forward for both your mum and yourself.

Now though I mainly wish I could get back to sleep. Not entirely sure faffing with my phone, even in dim night mode is what the doctor would prescribe! ⚠️

 

[jenniferpa]

Just to add @Ray96 - when you log in, you can tick the box "Stay logged in"

 

[Rosettastone57]

Hi
You've done a wonderful job but, to be blunt, isn't it time for a care home? You simply can't continue like this.

I agree. You are entitled to a life of your own. You need to protect your own health and welfare

 

[VerityH]

Andrew and Ray - I think you are both doing an amazing job, and I really wouldn't have the patience or calm personality to deal with the things you describe. Ray, I agree with what others have said here - you need some help. I wonder if a week's respite care for your mum would (a) give you a much needed break and (b) get her into the mindset that being cared for 24/7 by professionals isn't as bad as you all think it would be. One thing I've discovered from having to put my mum and dad, both with dementia, into a care home recently is that all the protests before that they wanted to stay at home are forgotten. In fact, neither of them can even remember their beautiful bungalow where they lived for 20 years, and it's only been 6 weeks! I completely understand that when you're in the middle of the mire everything seems un-do-able. If you get some help, it will give you space and distance from the problems and the anxiety to weigh up if you are really capable of looking after your mum any more. Good luck, whatever path you choose. x

 

[Joyful]

Thanks for your kind replies Kindred and mary joan, yes I will have to do something as its all become pure madness, like I'm living in a mental hospital. She holding herself very tightly with her head down, sitting on my bed and wanting to sleep but is so angry that she cannot sleep, I think its this anger problem that she has always had that is taking over, and you can't say anything to her because the anger just gets worse. When I tried to get her to her bed for a bit of a nap just now she dug her nails into me, not hard but just enough to let me know that I should leave her alone. You do your best, but its never enough.

She has started Mirtazapine so I'm hoping this might help.

My husband has just been prescribed Mirtazapine. It's only been a week but his anxiety is a lot better so hope it calms your Mum down if not you really need to get some more help. Take care of yourself.

 

[Ray96]

Thanks for your messages everyone.

Today seems is becoming worse than ever, after not drinking or eating hardly anything for 2 days, having been badly constipated, then diarrea, now constipated and in pain again and still not drinking anything I might have to call an ambulance if things do not improve soon. She's probably very dehydrated.

An Italian doctor said to me that in Italy they do IV drips at home at this stage and she should be seen by a neurologist but I don't think that happens in the UK, certainly not at this late stage, I get the impression that the GP is going to go down the Hospice route next.

 

[Ray96]

Maybe I have done the wrong thing but I just told mother that if she refuses food and drink again today then its the end for her, that she will end up in hospital and that she might well not be ever coming home again. But its all pointless like speaking to a brick wall, she won't even take a sip of her tea, terrible to watch, just pushes everything away. It's these tummy pains that she gets every day now that worry me the most, she moans and holds herself but can't grasp that she needs to put something in there, that her stomach is empty, pure madness.
Maybe calling an ambulance will be for the best.