Getting help for my mother

Sarasa

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Apr 13, 2018
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Mum now seems to have only two modes. There is the delusional, confused and sweet and the delusional, confused and ranting. When I go to see her or speak to her on the phone I'm not sure which one I'm going to get. As well as thinking the neighbours come in and steal things she now thinks that until recently other people lived in her flat and may still be there every now again. She thought I had been with these 'people' the other day, and yesterday she was cross because she thought on of them (who had been sleeping in her bed) hadn't taken her rubbish down when he went out. She doesn't seem alarmed by this, and sort of knows when she thinks about it that it isn't true, but she does seem to think that living on her own is a fairly new development and one she doesn't like. She's lived on her own since my dad died twenty years ago so I'm a bit puzzled by this and amazed at how the brain can make you thinks such erroneous things.
Maybe getting her to move to a care home (if that's what we do) won't be as tricky as I think. I'm going to look at the possibility of respite care in one near me on Monday just to dip our tow in the water.
 

Amy in the US

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Feb 28, 2015
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@Sarasa, I remember the first time my mother said something that made it apparent she had forgotten about the past 20-25 years of her life completely, as though they had just been wiped out. It was more than disconcerting, I can tell you! It gave me quite the shock.

One of the hardest things for me in dealing with my mother's dementia has been learning about the disease as I was completely ignorant when she was diagnosed. I had some vague ideas about short term memory issues and no idea that the dementia causes brain damage which affects executive function, visual spatial perception, planning, empathy, behaviour, and causes hallucinations, delusions, confabulations, and all the rest. It was such a steep learning curve. It's almost five years since her diagnosis and I am still learning, and still get nasty shocks!

I think it's very challenging for our healthy brains to grasp the cognitive changes dementia brings. I can't really explain it better than that, but hope you know what I mean. It is hard to be told that day is night or wet is dry and not ever discuss, argue, or engage with what dementia says. I had the thought fairly early on that the most useful lessons I could get would be training in acting and improvisational comedy!!

I hope you are able to find a place with the right sort of care for your mother and that you don't have to wait for a crisis to get her there. Best wishes.
 

Sarasa

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Apr 13, 2018
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Thank you for your comments @Amy in the US. I don't think mum has totally forgotten the last twenty years but they are much more vague to her than the time before that. It explains why she struggles to remember who my sister in law is as my brother met her shortly after dad died. Mum is still aware that my father is dead, but sometimes thinks he used to live in her current flat with her. I think that is partly as my brother looks a lot like my dad, so things my brother did for her get transferred to him. I think earlier memories are getting muddled too. The other day she told me how much her mother loved my son. I'm sure my grandmother would have, but she died ten years before he was born. I can cope with those sort of muddles, it's been told off for leaving without saying goodbye or having to listen to endless tales of what the neighbours have stolen when I haven't been there in the first place and I know the neighbours have been no where near mum's flat I find tricky!
 

Sarasa

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Apr 13, 2018
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Nottinghamshire
We are still lurching on, see the https://forum.alzheimers.org.uk/threads/medicine-review-at-home.114536/ thread for the latest crisis. Brother and I are agreed we need to move mum sooner rather than later but not quite agreed on the way to proceed. I've been looking at care homes in my area with a view to a bit of respite, my brother is still very keen on the extra care housing near him. I'd be looking more seriously here with a view to something permanent, but firstly we're thinking of relocating north when my husband retires and secondly its a fairly 'posh' area so care homes have all the trimmings and the fees are big. Maybe I should be looking near where mum lives at least in the first instance.
For nearly a week we thought we actually had a buyer for her flat. They were offering much less than we wanted but we were willing to go with it. However they couldn't raise a mortgage so its back to getting mum out of the way when viewings are happening. I'm going over very early tomorrow on the premise I fancy breakfast in a local café to get her out of the flat. I can't tell her that people are coming round, as she'd like to be there to talk to them if she knew.
 

Sarasa

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Apr 13, 2018
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Mum caused a scene in the GPs surgery last week as she thought she hadn't got her correct medicines. The upshot of that was she was given a temporary supply and has an appointment with her GP next week. The surgery also referred her to the medicine support service, who are doing a home visit, also next week. Talking to mum she doesn't remember much about it and certainly didn't remember that she had collected a prescription recently.
Then yesterday I got a call from the Mental Health Team. The surgery had also done a referral to them and the consultant wants to visit her at home. The days he could make it are ones when I can't, so I suggested he go along and see her on his own. This is the guy who wanted to prescribe risperidone to mum without meeting her. Given the kerfuffle about mixed up prescriptions for something that wasn't too critical I'm hoping that he doesn't suggest that again, or at least not without putting regular visits in place to dispense them and monitor her reactions. I'm not sure if I've made the right call not to re-arrange things and be there.
This weekend is mum's birthday. The family are meeting up to take her out for lunch, I hope she's on good form.
 

Sirena

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Feb 27, 2018
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I think you (or another reliable relative, if there is one) should definitely be there. You need to know exactly what is said between them, and have some input.
 

jugglingmum

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Jan 5, 2014
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Chester
I agree that trying to have someone at the meeting is essential, even if it means calling them up to change the time/day of the meeting.

With regards to the risperidone, it might be a good option and you need to get it explained to you what the benefits are. Whilst the headline for a lot of these drugs is that they aren't a good idea, in reality, from postings I've read on TP, they are the only thing that helps a PWD and some of them are very good at helping to reduce paranoia. There are loads of listed side effects with all drugs, whether paracetamol (which can cause severe constipation) to antibiotics which can cause all number of reactions and with a PWD it is often a case of trial and error to see what can alleviate the behaviours. There have been many posts on TP of drugs that work perfectly for one person being a disaster for another.

If your mother is self funding it will be up to you to arrange regular carer visits to dish out any medication.
 

Sarasa

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Apr 13, 2018
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Thanks for your replies @Sirena and @jugglingmum. Although I think being there would be a good idea the clinic was so vague as to when the consultant could visit I don't want to be stuck in with mum making excuses as to why we can't go out (telling her someone is coming would not be a good idea) and as we are seeing the GP next week (or I hope my brother is, otherwise I'm over there two days in a row) I'll leave things as they are at present.
As for risperidone or similar, I'm not adverse per se, its just without someone coming round to administer the drugs and keeping an eye on her I'm worried about side-effects, and mum is someone who can have very bad reactions to medicine. Getting mum to accept regular help would be a struggle in itself.

Edited to add:

Brother just texted me. He's had an interesting conversation with the psychiatrist who was at mum's on speaker phone. He was concerned about her misusing her meds, either hiding or overdosing and said that she was already on a low dose of risperidone. I've never actually seen it and last time I spoke to her GP I don't think he'd prescribed it as mum said she wouldn't take it. The psychiatrist was suggesting a dossette box and mum was saying in the background she'd throw it away. That's going to make next week's visit from the medicine support team interesting.
Jolly glad he got my brother and not me. My severe hearing loss makes using phones a bit of a struggle to say the least.
 
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Sarasa

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Apr 13, 2018
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Update a week or so later.
We had a very nice meal out with mum on Saturday to celebrate her 91st birthday. Mum was very muddled but cheerful, she kept on wanting to dance, which wasn't an option in the pub we were in. The most alarming thing was she seemed to think my brother was either my dad ('Was I eighteen when we met?') or a complete stranger she had to be polite too ('Are your parents still alive?').
On Tuesday my brother went over again to take mum to her GPs appointment. GP wasn't sure why she was there. The appointment was made when she had her meltdown in the surgery a couple of weeks ago and insisted on seeing her GP who wasn't available at the time. Unfortunately he didn't have any updates from the psychiatrist's visit, but will see mum again when he does. I went over yesterday for the medicine support team meeting. The person we saw was very forthright with mum which started to get her a bit angry and we didn't really get very far. She told me when mum was out of the room that they weren't concerned with muddles over the meds she takes at present but will need mum to take risperidone safely if that what she ends up on. It was obvious that dossett boxes wont work, mum can't see the writing, will probably get the days confused and is so anti the whole thing she'd probably chuck it away. The woman confused mum more than helped her as the GP told mum that she'd be able to get her medicines on the 16th of every month and the woman said they come in 28 day packs so it won't be exactly that date each time. It'll be interesting to see what is suggested next. She did go away promising to liaise with the surgery over getting prescriptions to the pharmacy.
The woman also mentioned memory clinics, which set mum off about having a very happy childhood and not needing to see anyone about that. The reason mum kept on saying that, was that after the first time she refused to go, a friend told her the clinic had nothing to do with if she had memory problems, but was looking at past memories to see if they caused problems now. She said that to try and encourage mum to actually go to another appointment, but mum has now turned that on its head and is saying she'd be happy to prove her memory is fine. Oh no she wouldn't !
 

Sarasa

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Apr 13, 2018
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We now have a copy of the report that the psychiatrist that went to see mum sent to her GP. He diagnoses mum as having 'probable vascular cognitive decline' and basically leaves it up to us and the GP to move things forward. Mum mentioned the neighbours stealing things and refuted the doctors explanation that things going missing are down to her. She claimed that she had never interacted with the neighbours, which we know is not true, and which she freely admits to family, which I find interesting, as it displays a certain awareness that she is perhaps mistaken.
This weekend I was away and my brother had to field a crisis when mum's bedroom door handle broke yet again. It involved brother getting the estate agent selling her flat and the handyman we employ to do such jobs for mum out to sort it. Both were very concerned and disturbed about mum's behaviour which has opened my brother's eyes to the fact that the flat he was hoping to move her to isn't going to be enough, and we are now discussing care homes.
I went to see mum on Monday, her memory seems to have taken another lurch for the worse, she'd gone out so I was chasing her up and down the high street. When I found her (back at home) she had forgotten what time I was going over. I'm over again on Saturday which is when we are supposed to collect her medication from the pharmacy. At the moment she isn't taking anything, so it will be interesting as to how long she manages before she gets in a muddle again. I've been into the surgery (before I saw the psychiatrist's letter) and raised my concerns. I was hoping the GP would call her in, but maybe I need to go and make an appointment off my own bat.
 

Sirena

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Feb 27, 2018
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I am not sure what else the GP can do now. The problem will be getting your mother to take the medication, it seems very unlikely she will be able to do so reliably. I am glad your brother realises how much she has deteriorated, it sounds as if it is getting to the point where she isn't safe on her own now.
 

Sarasa

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Apr 13, 2018
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The GPs surgery rang today and left a message to phone them up to arrange an appointment for mum. Not quite sure what its about but I guess it has something to do with trying to see if they can get her to take risperidone safely. Of course every time I've rang back they've been engaged. Will try again tomorrow.
 

Sirena

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Feb 27, 2018
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I think she'd need someone with her to ensure she takes the tablet. Even if she agrees to take them, it's unlikely she will be able to do it reliably on her own. But even if a carer visit is organised to do this, the carer can only ask her to take them, they can't make her. We had that problem with my gran.
 

Afcarb

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Mar 17, 2019
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I have spent the last few hours reading all the posts on this thread having woken up in the middle of the night wondering about my responses to my mum's paranoid ramblings. I am on care duty this weekend as the live in carer has time off. She is an absolute godsend. Before her, mum was having domicilliary cares 4 times a day as a result of her mobility problems. We tried various care agencies obtained through SS. Not only were they unreliable with times there sometimes woild be 4 or more carers daily so the consistency wasn't there. Stories of thefts and things being moved about (all inaccurate) were constant added to the stress of their unpunctuality or their rush to get to the next client. Of course the carer is still being wrongly accused of thefts, wearing mum's clothes and using her towels but nowhere to the extent prior to live in. As the only and unmarried child I am relied on for emotional support, expected to live with her by relatives and friends (as is the norm in African and Caribbean culture) however I like my independence far too much and mum and I clash on personality. The little fusses she makes irritate me and I am too laid back for her liking But I am now thinking whether I should be correcting her when she accused the carer of theft or that the neighbours have deliberately making noise to annoy her or just going along with it and making agreeing noises as she gets really shouty when I correct her. She was diagnosed with vascular dementia some years ago and although it was mild then it is getting worse to the point we went to the GP for him to see her decline. I was surprised he didn't correct her when he asked her basic questions, the date etc. Is that the norm? (Apologies for lengthy text)
 

Louise7

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Mar 25, 2016
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Welcome to TP. I find that it's always best to 'go along with it' rather than correct them, and it certainly wouldn't be usual for a doctor to correct someone during a memory test. Everything you have mentioned - accusing people of theft, moving things around, trouble with neighbours etc - is common behaviour. Trying to reason with someone who is memory impaired rarely works. I haven't read back through all of this thread but if it hasn't already been mentioned there is a great thread here which you might find useful, called compassionate communication, and it provides lots of suggestions/strategies relating to communicating with those with dementia: https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

Sarasa

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Apr 13, 2018
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Nottinghamshire
Hi @Afcarb . It's a tricky one isn't it? I've read all the compassionate communication stuff and agree that it is the way to handle our PWDs (people with dementia). BUT and it is a big but if the stories are actually causing distress and harm to other people then it gets tricky. Jollying along or changing the subject works fairly well with my mum but when she calls the police out because she thinks her neighbours have stolen a large amount of money from her, screams outside their door because she thinks they control their heating and tells everyone she meets how awful they are the damage she is doing to their reputations is potentially serious. Certainly trying to tell her that logically it can't be happening (sneak in at night and steal blood pressure tablets from under her pillow?) doesn't work as mum claims it must be them as these things didn't happen before they moved in. Well actually she was just starting to think that people were taking things it's just that the neighbours were unfortunate to move in just as mum started to get more insistent that things were being moved and going missing.
I think your wise not to move in full time with your mum. Mine went through a stage of thinking I was really mean not to let her move in with me, but apart from my home being totally unsuitable, I know it would be a disaster if she did.
 

Afcarb

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Mar 17, 2019
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Thanks for the responses, @Louise7 and @Sarasa. It's actually good to be receiving some advice after bearing this for a few years and to have others in similar situations face the same problems and emotional issues. I will try and be more understanding (frustrating though it may be at times) Thanks for the link, @Loiuse7, very useful.
 

Sarasa

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Apr 13, 2018
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Took mum to her doctors appointment yesterday which turned out to be really useful. Her regular GP has had an accident and the one we saw was really on the ball. More or less the first thing she said was do you have LPA and it went on from there. Obviously very clued up about mum's mental state, while managing to make mum feel special. She managed to persuade my mum that a dossette box would be a good idea. Mum has gone through a month's worth of blood-pressure pills in ten days. I don't think she's been over-dosing, the tablets are tiny and when they ping out of the packet mum can't see where they went. I certainly found loads crushed into her bedroom carpet. Today the medicine support service rang. The person that came and saw mum a couple of weeks ago isn't convinced that mum will get on with a dossette box. I'm inclined to agree but think it might be worth a whirl. She's going to discuss it with her manager and call me back.
In other news my brother is having to take a step back as he'd had a worrying diagnosis and needs to concentrate on his own health. In day to day matters in doesn't make too much difference, but it is going to be tricky if I feel I have to make a decision about something major quickly.
 

Helly68

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Mar 12, 2018
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@Sarasa - in terms of your brother having to step back, obviously he must put his own health first. My sister lives abroad, so can't really be involved in day to day decisions, but I think we have a tacit agreement that if decisions need to be made, I will make them and she backs me up - unless there's a real difference of opinion. Fortunately this hasn't happened. I think we (my sister and I) are both pragmatic about how this works. We do discuss "future planning" (in as far as you can) for instance we knew that Mummy would need a care home place, and we agreed between us this would happen, with all the funding (initially self funders) with all the implications of this. That way you avoid a sudden decision - where you can. Not always possible. You have my sympathies about making decisions alone - terrifying but you have to try and do the best in the situation you find yourself in.
 

Sarasa

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Apr 13, 2018
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Things have move on a bit in the last couple of weeks. After a discussion with the medicine support service we tried a dossette box. Mum hated it, going on about how people didn't understand how she feels, and how difficult it would be for her to use. She made an appointment to go and see the GP about it. I couldn't go so I'm not sure what was decided. All mum can remember was him telling her to eat properly. I think he probably thought that as her medicines are not vital to forget about them for a while.
In other news mum is booked in for a couple of weeks respite at the home I went to look at a few weeks ago. I liked it, and another TP member has a mother there and thinks it is good. I passed off the assessment as a friend being in my mum's neighbourhood and phoning me up on the off-chance I was at my mums. The assessment was a very general chat in which we talked up how lovely where I live is and how nice a holiday in the area would be. If it works out I'm thinking on making it permanent as we now have another buyer for mum's flat.
The only tricky thing is my sister-in-law and I are supposed to be taking mum on holiday in early June. I'm not sure if mum would cope with going on holiday from the home and back again. Also my brother is having a major operation next week. If all goes well he should be on the road to recovery by then, but if he isn't its going to be tricky.. SiL and I are meeting at mum's on Saturday to take her out for the day. Hopefully the two of us can chat about it all while mum is the loo or trying on clothes!
 
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