Need advice

ems80

Registered User
Jun 4, 2013
16
0
Hi all, this place is great and I've been trawling it for the past few weeks for advice and have found lots of help here. I do have an issue at the moment though...

My mother who lives alone 100 miles away has suspected frontal dementia (should get the diagnosis tomorrow, scan few months back showed sign of front cell loss) and she's been on risperidone for the past month as she has been aggressive and abusive to neighbours.
Well, its been going fine the past few weeks and the LPA turned up on friday so was looking forward to a weekend of nice work (I know I enjoy my work, its crazy, section me now) when all hell breaks loose today and I have several neighbours complaining about her being aggressive again over the last week, following people and threatening to damage greenhouses and cars... So I phone her and she says her medication has run out today, I know it hasn't, and that the dr will sort more tomorrow, but she's been taking it everyday for the past few weeks (so she says).
Currently the CPN has only been to see her twice since May and is only there a few minutes to check her medication, pointless really as she's extremely good at hiding her ticks (are they called ticks? Its when she has episodes of aggression etc). She rarely has any episodes in front of family or close friends, I've only seen one when I was behind her and she didn't know I was there, but neighbours seem to get the full force of it. I'm really not sure what to do as I'm worried she may say something to the wrong type of person passing by or she has been known to shout at traffic when she "pops to the shops". To talk to her on the phone you wouldn't even guess there was anything wrong and when I tell family whats happened they seem shocked and reply "thats not like her".
I don't think sectioning is an option as that would push her over the edge, plus she can fully look after herself in terms of washing, cooking, and cleaning its just the behaviour and aggression I don't know what to do. Phoned the CPN and they don't work weekends, called out of hours but they wouldn't send a DR unless my mother phones them and she said they couldn't do anything unless she was in an episode when they got there anyway. My mother is totally oblivious and thinks everything is fine even after the brain scan results.
I've fallen out with a nearby uncle as he thinks you can just phone social services and they will sort her out, honestly I think he'd have her sectioned as he speaks to lots of the neighbours and seems ashamed, even though its not her fault. Family (her siblings) have been hard work too as I think they expect me to quit work and move my family back immediately, plus they didn't seem very concerned 8 months ago when I started the whole process of trying to get a diagnosis with the GP.
Sorry for the ramblings, I need to consider my options, first thing will be to sort the medication so is it time to look at carers or a home? As I said earlier I don't think sectioning will help, plus she was a very proud person and I don't want that on her record. Are there any other options I've missed? Any advice would be grateful.
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
You seem to be doing all the right things.

I wouldn't worry about your mother upsetting people by saying the wrong thing: it is amazing how people understand that someone is not well - especially as we get older, people can be very quick realise what is happening. If someone got really worried/upset by her and called the emergency services, they have dementia -training and are excellent at working with patients.

If the emergency services were called, they are obliged to inform social services - so it can be a blessing in disguise.

As for sectioning - that is not a decision for the family. It is a medical decision which has to be taken by a team that includes two doctors: it can only happen when there are reasons to fear for someone's safety - or the safety of others.

I am very sorry this is happening - but this society is tolerant of people who are difficult - and we nearly always look out for them in the end.
 

Sterling

Registered User
Jun 20, 2013
69
0
Hi, I 'm sure there will be lots of helpful advice but I just wanted to say that I hope you find a way forward soon and that you get positive help and support.
 

ems80

Registered User
Jun 4, 2013
16
0
Yeah I'm not worried about what people say, only thing is it gets out that she is a vulnerable adult and her safety is my main concern. Society and her neighbours are very tolerant, but I worry for that 0.1% that isn't. For example I was out with her a few weekends ago and I stopped near to a cafe to tie up my laces when all of a sudden a man sitting outside the cafe shouted "what the f**k you looking at?" to my mother. For a second not realising he was speaking to us, when I did I just quickly ushered her away, but she couldn't believe he was talking to us either as she said she didn't do anything. Could just be a crazy double dementia/mentally ill coincidence though.

Hi butter
The difficulty is the distance as its horrible finding things out days or weeks later as family or neighbours haven't said anything, then when they do they expect me to just wave a magic wand to fix it and give helpful advice like "have you spoken to the GP" after spending 8 months going to consultants, psychologists and having cognitive tests.

I did read about the mental health act and the nearest relative, but as I said I don't think it would help and I very much doubt she would go in voluntarily.

I think it might just be a case of wait and see what can be done with the medication.
 

ems80

Registered User
Jun 4, 2013
16
0
Thanks sterling, its a horrible disease and it seems to be getting more publicity lately, or that might just be me actually seeing it as I know a sufferer now. This is a great place for advice and support, just knowing that there are others and sharing the resource is a great help.
 

FifiMo

Registered User
Feb 10, 2010
4,703
0
Wiltshire
I think your best approach would be to summons the help of the neighbours to get your mum the help that she needs. I would consider preparing a letter for those in the area to explain that you are working to get mum help but would ask them, if they encounter her or see her being aggressive, that they should contact social services or the police and bring it to their attention. Explain that having a body of evidence will help her get the attention more quickly.

Please do not rule out sectioning. It is not like a criminal offence but only becomes necessary when they can't persuade your mum that she needs treatment and she refuses voluntarily to get this. As you will see on here, sectioning someone and spending time assessing them and getting a suitable medical regime in place, can result in them being able to live at home for much longer, particularly if she is capable of functioning in looking after herself.

Don't rule out the police either as a tool. They are used to dealing with these types of situations and they have immediate access to the professionals so she can leapfrog to the head of the queue and get the treatment she needs. They are also required to report any call outs to her GP and Social Services.

As to the siblings, it might be worth printing off some of the fact sheets and let them see that this is nothing to be ashamed of. That your mum will not be aware or able to control her actions and for this reason she needs extra support from them. The best thing they can do is to become protective of her, especially if she is less likely to become agitated if they are around. They might also find the information in the attached thread useful as it explains things from your mum's point of view ...

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Hope this helps,

Fiona
 

ems80

Registered User
Jun 4, 2013
16
0
Thanks for the advice it's much appreciated. Looks like the police may have been involved yesterday so waiting to hear about the full incident as I've been told she threatened someone yesterday on route to the local shop...
 

Noorza

Registered User
Jun 8, 2012
6,541
0
Thanks for the advice it's much appreciated. Looks like the police may have been involved yesterday so waiting to hear about the full incident as I've been told she threatened someone yesterday on route to the local shop...

My mum gets violent, aggressive and abusive and to be honest she is becoming a danger to herself. I fully agree with them getting the police involved, just to get her into the social services loop and hopefully helped.
 

ems80

Registered User
Jun 4, 2013
16
0
Well thought I'd post up a status;
Things seem ok at the moment and shockingly my mother asked this evening "what will happen to me if I get worse?". Considering she's never accepted that anything is wrong it's a huge surprise. So we had a frank discussion and I explained everything, still not sure she understands but still in shock she actually asked. Also she said that my wife and I have our own lives to live and she didn't want us to be worried about her, which is really nice as lately emotion and empathy have not been seen so my wife in particular was very emotional from this, in a good way. One sad part though was her question of her "getting worse and suddenly dieing in a chair alone". We tried to explain its not a sudden death disease or a tumour and that we've now started the move back to be near her, which comforted her. My wife and daughter have already moved back and I should follow shortly in the next month or so, so we can be nearer to see her and help with day to day things.

Anyway she's currently on 2 tablets a day of risperidone which seems to really help, I do think it might be too much as she does seem slower and more tired, but her conversation is more engaging and there have been no outburst since the dosage increase a month ago. She is saying how bored she is this week, which is a big difference as usually she's compulsive and repetitive in cleaning the house and busing herself around the house. So what I'd like to find is a hobby or something she can do through the day any suggestions welcomed... She started back embroidery but did 2 table cloths in a week and now doesn't fancy doing it anymore. I've asked her but she doesn't know what to do and all of my suggestions just gets refused (dance classes, Alzheimer's coffee mornings, painting, embroidery, baking, gardening,)
 

FifiMo

Registered User
Feb 10, 2010
4,703
0
Wiltshire
Hitachi Ems

Thank you for the update and I am glad that things have settled for now. I wonder is your mum would benefit from going to day care a couple of days a week. As well as giving her something to do, getting her out of the house would be good too. It would also give you a break knowing she is somewhere she is safe and being looked after. Just don't mention day care to her. Tell her it is a new lunch club and they need some help in organising things. This will give her a sense of purpose and it will be a 'very important' job for her to do.

Fiona
 

Pepper1066

Registered User
Feb 15, 2013
20
0
Wales
Your mother

:confused:
Well thought I'd post up a status;
Things seem ok at the moment and shockingly my mother asked this evening "what will happen to me if I get worse?". Considering she's never accepted that anything is wrong it's a huge surprise. So we had a frank discussion and I explained everything, still not sure she understands but still in shock she actually asked. Also she said that my wife and I have our own lives to live and she didn't want us to be worried about her, which is really nice as lately emotion and empathy have not been seen so my wife in particular was very emotional from this, in a good way. One sad part though was her question of her "getting worse and suddenly dieing in a chair alone". We tried to explain its not a sudden death disease or a tumour and that we've now started the move back to be near her, which comforted her. My wife and daughter have already moved back and I should follow shortly in the next month or so, so we can be nearer to see her and help with day to day things.

Anyway she's currently on 2 tablets a day of risperidone which seems to really help, I do think it might be too much as she does seem slower and more tired, but her conversation is more engaging and there have been no outburst since the dosage increase a month ago. She is saying how bored she is this week, which is a big difference as usually she's compulsive and repetitive in cleaning the house and busing herself around the house. So what I'd like to find is a hobby or something she can do through the day any suggestions welcomed... She started back embroidery but did 2 table cloths in a week and now doesn't fancy doing it anymore. I've asked her but she doesn't know what to do and all of my suggestions just gets refused (dance classes, Alzheimer's coffee mornings, painting, embroidery, baking, gardening,)
 

Pepper1066

Registered User
Feb 15, 2013
20
0
Wales
What about telephoning the Alzheimer's society or age concern in your mothers locality
They offer a befriending service of volunteers who could possibly visit your mother or take her out and may have some suggestions that could be of help to you
Can you get your mother assessed by social services ? It would help greatly to then get the help in that she will require. I thought the other members idea of keeping the neighbours well informed was useful
Good luck best wishes
 

ems80

Registered User
Jun 4, 2013
16
0
Another quick update

Sorry its been a hectic time and so much going on… I've finally moved closer, now only 10 mins away instead of 2 hours!

Well after several meetings with the CPN, who's had lots of personal issues, and doctor and trying to get her to try the befriending service she still refuses, we've tried one group visit but didn't go too well as it was singing for the brain and an older attendance put her off.

On a very good note she's responded amazingly to the medication, 25mg x2 day of risperidone, and the difference is unbelievable, almost gone back 2 or 3 years!
She went to one of her neighbours and apologised for being abusive, she said 'sorry I can't remember it but my son said that I was abusive to you so I'd like to apologise". The shock from both me and the neighbour who I speak to regularly was jaw dropping, which was nice. It has been a fine balance with the medication as it was dropped as she was zombie like for a few weeks.

She has had bouts of extreme anxiety over basic things like turning the tv on, my fault as got her a new one as her old one died, and cooking using the oven which has been tough, but again medication has helped with the dr prescribing a low dosage of gabapentin.

Im still surprised at how well she's coping and her understanding of her condition and now the very likely possibility of her twin sister showing similar signs and aggression. She also now colours after picking up my 4 year old daughters colouring books and she really enjoys it, so xmas present was sorted!

Also sorted the jobcentre and she now has the right benefit and support… took a while even after the diagnosis and the LPA. Changed all the bills to direct debit and got access to her bank account, didn't take it over fully was just allowed access by a nice adviser at barclays and mam authorising it, I can now manage it online and within a branch. Managed to refurbish her bathroom and swapped the bath for a shower.. it was risky as I know change for dementia sufferers can be hard, but after a few goes she was fine with it. Tried to simplify things like removing additional bins, green waste, recycling etc and now she only has one which council were fine with as she's on her own.

I'll try and keep updating as its hard trying to look after everyone and run my business as well, not enough hours in the day! Thanks to everyone here for all your help and support. x