Getting help for my mother

[Sarasa]

Just on way back from my mothers. She went and shouted at the neighbour's again yesterday as she was convinced they had taken her favourite ring. They called the police, and a PC came round and told mum not to stand shouting outside the neighbour's door,but to phone them when she thinks things have gone missing. She claims she won't do it again, but is still convinced they have a load of her clothes etc. I'm afraid I did say it's not the neighbour's, its you, which she took better than I expected, though maybe because I agreed she wasn't simple, and then moved on to other things.
As for the ring, it was in the living room, in its box. 'They must have come in and put it back, I'd never leave it there'.
Apart from all that she was very sweet, but more muddled and forgetful than she was even two months ago.

 

[Sarasa]

Mum called the police yesterday as she'd locked herself in and couldn't get out, of course the neighbours did it. That was in the morning. In the evening she phoned again in great distress. My husband and I couldn't work out if she'd locked the door and then couldn't unlock or she couldn't lock it in the first place, either way she was convinced the neighbours would come in and try to murder her. Before she phoned us she phoned the police again, and this time they sent round an ambulance. One of the paramedics phoned me, they didn't think it was worth taking her to hospital but he was checking I was aware about the paranoia. He mentioned dementia too. I explained about mums obsession and that we've got the mental health team visiting on Wednesday. I assume he'd have made a referral if she hadn't already been in the system.
I've just popped round to see her. Still obsessed with all the things the neighbours are doing or might possibly do. I also discovered she didn't think she ate anything yesterday, which probably didn't help.
She is still refusing all help, I hope the team on Wednesday can help show us a way forward.

 

[Sirena]

I will keep my fingers crossed for you all on Wednesday, I hope they are able to offer your mother help asap.

 

[Sarasa]

Well I guess the visit from the Mental Health person went as well as could be hoped. I didn't tell mum she was coming at 10.30 till 10.15 which was just as well as mum then insisted she wanted to go out and not meet the person. I managed to keep her from doing that until the woman arrived, phew. Mum then turned on the charm and spent the next hour rabbiting away, not quite answering the questions asked. None of them were obvious memory test ones, but I think the nurse got a fairly clear idea of what's up. She was also an Occupational Therapist so I let mum show her round the flat and let her chat about showering arrangements etc. I slipped the woman my six pages of notes about mum's behaviour over the last couple of months and my contact details. Nurse said mum would be discussed at the team meeting tomorrow and they'd probably arrange for her to see a consultant. They promised to contact me as well as mum about any meetings. She was very good at pointing out there are lots of other reason other than dementia as to why my mum might be behaving as she is, but I'm not sure mum got that point.
The interesting thing was that when we went out for coffee mum more or less admitted to the charm offensive. She's convinced she's done enough to prove there is nothing wrong with her. Sorry mum, I don't think that was the case, though I'll be interested in what the nurse actually thought,

 

[Cazzita]

Yes it will be interesting to see what the nurse and the team do think. Amazing that people with dementia think they can fool everyone. My mum still thinks there is absolutely nothing wrong with her!
Good luck Sarasa and keep us updated. All the best. XX

 

[Sarasa]

My brother went to look at a possible place near him for mum to move to today. It's extra sheltered accommodation and in theory I'm not keen as it I think mum wouldn't be able to stay there long. However they have a 'try before you buy' scheme and it might be a good idea to pop mum into it and see how she copes. I'm going over to have a look myself next week and then I'm going out for lunch with brother and sister-in-law to chat over options.

 

[jugglingmum]

My mum is in sheltered extra care and it has been fantastic for her. She has been there 4.5 years and the carers are brill, with her care being upped as she needs more.

The stable environment has reduced my mum's level of anxiety, and when she was first there it was ideal as it meant she retained her independence. With people on hand to ask for help, it might reduce/remove her paranoia.

My mum had a paranoid stage when still at home (before I realised what dementia was) and with hindsight I think this was in part being caused by brain overload of trying to deal with daily life.

Like you would ask in any care setting, do ask if their are behaviours they wouldn't cope with. It might be with less to worry about your mum will be more settled, so I would definitely do the try before you buy.

I am not an advocate of one forever place, I think being in the right stage for someone's level of dementia even if this means several moves gives a PWD the best quality of life.

 

[Sirena]

My brother went to look at a possible place near him for mum to move to today. It's extra sheltered accommodation and in theory I'm not keen as it I think mum wouldn't be able to stay there long. However they have a 'try before you buy' scheme and it might be a good idea to pop mum into it and see how she copes. I'm going over to have a look myself next week and then I'm going out for lunch with brother and sister-in-law to chat over options.

I remember you mentioned your brother was thinking of this, and you were concerned about costs in the event of her having to move on from there. How long does she get to 'try' before she buys?

 

[Sarasa]

Thanks for your replies @jugglingmum and @Sirena . @jugglingmum I agree that mum trying to do things for herself adds to her stress. I had a phone call this week panicking about not being able to find a statement about an investment that matures soon. I knew I'd filed it away and was trying to keep mum calm by saying I'd find it on Saturday, no one would have taken it, and even if someone did have it they couldn't take out the money. Of course she didn't believe me. She did phone back ten minutes later to apologise as she'd found it. Having poor eyesight and poor memory is a tough combination. @Sirena, mum could stay for three months before making a decision.
My current thinking is if we can get mum to agree and that is an enormous IF this might be the best option. That would give us time to sort out the kitchen floor that need changing and is causing her yet more stress, turn her spare junk room back into a proper bedroom and get the place thoroughly cleaned up. We can then decide what next.
The downsides are that she'd be out of the system where she lives (and she still doesn't have a formal diagnosis), away from what friends she has left, and that, being outside London, I couldn't use my freedom pass to visit. The journey wouldn't take much longer though. If my husband and I weren't thinking of moving to the Midlands in the next couple of years, I'd be looking round here.

 

[Sirena]

Three months sounds a good chunk of time to find out whether it will work for your mother, it's definitely worth a try - but as you say it depends on her agreeing, and getting PWDs to agree is not easy!

I remember the stage you're going through, my mother would ring in a panic about not being able to find/remember something financial. Or she would get a letter in the post which panicked her and ring me but be unable to explain what the letter was about. She would also post a batch of bills to me to 'deal with' but she would send them to my old address because she didn't remember I'd moved, which wasn't really very useful!

 

[jugglingmum]

I had a phone call this week panicking about not being able to find a statement about an investment that matures soon. I knew I'd filed it away and was trying to keep mum calm by saying I'd find it on Saturday, no one would have taken it, and even if someone did have it they couldn't take out the money. Of course she didn't believe me. She did phone back ten minutes later to apologise as she'd found it

When I activated my POA and removed all the paperwork from mum it removed a lot of her anxiety. She did keep asking questions about things, and I'd say don't worry, I'm dealing with it now and it's all in hand.

Based on my experience I think that PWD get a lot of anxiety about daily life, as when you break it down much of what we do is very complex. I was amazed how my mum reacted to having lots of things 'taken away' from her, eg she likes going to the restaurant. She feels very safe and secure where she is - to the extent she says this to the SW's at her annual review. Once there she knew straight away it was the right place, but there is no way she would have agreed to it. I was 'fortunate' in that my mum had her crisis on the way to my house, I removed her car keys and wouldn't let her drive so she couldn't return to her house, and I was very clear she wasn't living with me long term(a then 8 and 12 year old would not have worked). She did call me bossy a few times in a very nasty way, but I was very consistent and calm. I didn't have POA (it was in process) when she signed the conveyance papers at the solicitors and he deemed her to understand and have capacity to sign on the day.

I don't think a PWD has the all round cognitive skills to understand the need to move, and hostess mode kicks in and they insist they are alright. It is hard (well I found it hard), but you need to ignore her nasty argumentative comments and tell her what is happening and sell all the benefits of it to her (moving away from the neighbours that take her things would be one of them if it was me). I felt like I was treating my mum with the sort of tough love behaviour you would towards an alcoholic, luckily once she'd moved she thought I was the best thing since sliced bread, but she was very nasty when she accused me of bossing her around.

away from what friends she has left,

She may well make new friends, I'm guessing she doesn't see very many and even if you moved her locally they might all tail off.

I didn't understand it when I was told this but the most important thing is to be safe and secure, PWD don't need what we need as a priority in life.

This stage is horrible when they are aware they can't do what they should be able to do, and whilst my mum is still aware of this, minimising what she has to do made her quality of life better.

I hope my comments make sense.

 

[Cazzita]

My brother went to look at a possible place near him for mum to move to today. It's extra sheltered accommodation and in theory I'm not keen as it I think mum wouldn't be able to stay there long. However they have a 'try before you buy' scheme and it might be a good idea to pop mum into it and see how she copes. I'm going over to have a look myself next week and then I'm going out for lunch with brother and sister-in-law to chat over options.

Oh that sounds positive! Good luck with the viewing and the chat with your siblings. Hope all goes well there x

 

[Sarasa]

Thanks for the comments @jugglingmum and @Cazzita . My brother tells me my sister in law has a few ideas for convincing mum it will be good idea. I look forward to finding out what those are next week. I think mum would like a care home. She loves chatting to people, and can be great fun if you haven't heard the story before, or realise its been horribly mangled by the umpteenth retelling.
Tomorrow mum has one of my nieces going over for tea and cake in the afternoon. Mum is worried that the neighbours will steal the Victoria sponge before then.

 

[Cazzita]

Thanks for the comments @jugglingmum and @Cazzita . My brother tells me my sister in law has a few ideas for convincing mum it will be good idea. I look forward to finding out what those are next week. I think mum would like a care home. She loves chatting to people, and can be great fun if you haven't heard the story before, or realise its been horribly mangled by the umpteenth retelling.
Tomorrow mum has one of my nieces going over for tea and cake in the afternoon. Mum is worried that the neighbours will steal the Victoria sponge before then.

Bless your mum! The brain is the weirdest thing isn't it? Hope all goes well and hope that you are starting to feel more hopeful now that things will start moving in the right direction for you all xx

 

[jugglingmum]

I think mum would like a care home.

If you think your mum is at the stage for a care home, and she is self funding, and would accept it, then it might be the right option.

I think 3 months sounds a good length of trial period (meant to say that before).

When my mum moved into her sheltered extra care flat, which is tiny, for the first 2 weeks if I went round when she was in the bedroom, she would tell me that she had a kitchen but didn't know where it was.

At my mum's place there is a coffee morning every day for residents so plenty of time to chat, but my mum really enjoyed having her own flat where she could make her cups of tea, sort out her own breakfast and be on her own.

 

[Sarasa]

@jugglingmum , I'm in a bit of a quandry about whether or not a care home would suit mum. I went to look at a couple round here last year, not with any serious intent of putting mum on a waiting list, but just to see what was available. Both were fine, but most of the residents in one looked about forty years older than my mum and as she is ninety that made me realise that most people are much further on than she is.
My visit yesterday was slightly more dramatic than planned. Mum was fine, very forgetful and still going on about the neighbours taking stuff. I'd got there early so decided to go before niece, T, turned up, as I thought it would spread the visits out and mum is always much better one to one. I must admit I couldn't bear the thought have having to listen to the same stories about the nasty neighbours and the tour rep than mum is in love with again. Got to the bus stop and found niece flat out on the pavement being looked after by a very nice woman, who had already called the ambulance and T's mum. T has various medical problems, including epilepsy and seems to have had a seizure. Paramedic did a check up and decided she didn't need to go to hospital. I took her mum's where the paramedic came and finished off his paperwork. T was fine, but desperate to get home. Mum seemed pretty oblivious to it all, and I wasn't sure if she understood what had happened. Anyway after a brief visit we sent T home in a taxi and I went home too.
I texted my brother to tell him what happened (he and T's mum split up years ago) and he told me mum had already been on the phone telling him what had happened, so she had caught on more than I thought. In the brief chat T and I had when we left mum before she got in the taxi she said she thought mum was lonely, and she may well be right. Another reason to try and find mum somewhere with more social interaction on the doorstep.
I guess I'm glad I left early as I doubt that T would have ever got to mum's otherwise, , though I do feel a bit guilty as she is a really lovely person and I don't see her very often, so trying to sneak off before she arrived seems a bit mean.

 

[Cazzita]

Wow @Sarasa, such a lot of drama in one day! Don't feel like you are being mean - you are just trying to save your sanity x

 

[Sarasa]

Brother, sister-in-law and I went to look at the place near where they live that they'd seen last week which they think might be suitable for her. It's sheltered accommodation with very nice flats and a lot of help to hand if you need it. I really liked the flats and the warden, as do brother and SiL. One of the flats is available for rent (the 'try before you buy'), and at the moment brother and SiLare trying to find out exactly what the price would be. I think mum would think the place is too quiet, she'd have to get a taxi to the shops, not that they are far away, but too far for her, and I know she hates the idea of any sort of on-hand help. However I think this is probably the best they'll find in their area and if we could get a reasonable short-term let it would be good to see how mum got on, and give us a chance to sort out her flat for selling.
I spent ages on the phone on Monday talking to the person from the Mental Health team who visited mum a fortnight ago. She promised to phone back on Tuesday, but nothing yet. I'll chase again sometime next week, but I think mum is probably fairly low priority.
At the moment she is doing OK. She isn't going round to the neighbours, though still sure they take stuff, and is more forgetful than ever. She thought the paramedic that turned up to check my niece over on Saturday was just a nice young man that had helped her.
We spoke to the warden at the sheltered accommodation about mum's paranoia and eyesight etc and she thought they could cope. I think she might have been a tad optimistic about that, but maybe mum would be better in a new environment, (guess that's me being very optimistic). Having a short-term let would help answer that question.

 

[Sirena]

Re people in a care home looking older than your mother, I had exactly the same thought when I chose the care home for my mother. But actually now she's there I realise she doesn't stand out as any different from them, and having visited many times I realise there is a mix of residents from relatively early dementia to late stage. And as she will inevitably decline the fact there are late stage residents is a good thing, because it means they won't throw her out when she is 'too much trouble'.

But the sheltered accommodation sounds a good idea because it will give you a chance to see how she gets on in that type of environment, and if it doesn't work out she can go back home while you reconsider. One of my main worries was that my mother was used to going out to the shops/park every day with her carer, whereas at the care home outings are less frequent (although of course you can always take her out if you want to). But that does not seem to bother her at all because there are always activities happening, and people she can talk to.

 

[Cazzita]

Oh Sarasa, this all sounds good.The try before you buy option is such a good idea. Good luck with it all and fingers crossed that it all goes well.
Hope you get that call back too!