AIBU to ask you to become a Dementia Friend?

[lilac26]

I did the Dementia Friends course at college today, and now I'm a Dementia Friend.

It is just about understanding a little bit about dementia, and maybe making a tiny bit of difference to somebody by having that understanding.

The website has lots of information for those wanting to learn more about dementia, a video you can watch, and details of how to have face to face training if that is what you would prefer.

www.dementiafriends.org.uk/

Gosh.

Close to my heart as dad has mixed dementia and as several have mentioned, my lovely funny caring articulate intelligent dad can't even string a Sentence together now. Upsettingly he's reached this point as mum died so since mid January I have effectively lost both parents.

I think he still has thoughts that matter but he can't articulate them :(

Isn't dementia friends just about upping awareness so that if my dad walked into a cafe he'd still get served " hot stuff for drinking with milk" and " a thing" ( mimes feeding biscuit into mouth and clacking teeth) not chucked out for being batty, and the server might even suggest he stays there till they check he's not been reported missing, as he appears not to be ok to be out alone.

I agree, 'martyrdom' is a very unhelpful term. We're all struggling, trying to do the best we can, with very little outside help. Which is why I say, if you, as a carer, just can't cope any more, it is time to consider a care home. For my dad, he was getting up 4 times a night, not knowing whether it was night or day, wandering outside, potentially falling downstairs. Basically he needed 24 hour care which I was no longer able to give him and in the end the safest option for him was to go into a home. ' dementia friends' would have been useless in his case. Every case is unique and a huge practical and emotional challenge for every family having to deal with this.

Yes agree with Theas

This discussion above seems to be losing sight on the needs of the person with dementia, particularly those in the earlier stages. Dementia Friends seems to be about educating people who may meet people with dementia in their day to day lives. So this could be a bus driver when a person with dementia is confused about a ticket, or the people in the queue behind them on the bus, so that people understand how to support someone with dementia in these circumstances. This surely is a good thing for the dignity and independence of people with dementia.

No one is saying that Dementia Friends is the answer to all the dementia problems. No one is saying Dementia Friends is the answer to carers needing support. But I really think it is helpful, and would have benefitted my mum when she was in the earlier stages of the illness.

Eventually I think the care home has to be the answer but it brings its own problems not least of all cost, trust and the fact that the dementia sufferer doesn't want to go.

The awareness raising might help in the situation that you have mentioned AWholeLottaNosy - I have found that some people have been wonderful once they know and if they have had some experience of it - so yes from that point of view maybe...

Sorry - yes AntiHop - you make good points too. True.

I've got mixed feelings about this. My mum's had Lewy Body dementia for the past three years, and is now in the final stage. I don't know exactly how long she's got left, but it's likely to be only a matter of weeks. I've cared for her since she was diagnosed, and like all the other carers who have posted on this thread, I'm tired. Tired of her not knowing who I am, tired of watching her wasting away, tired of having to fight for information and support, and tired of knowing that her friends gradually stopped coming to visit because they hated seeing her 'like that'. I'm pretty sure she hated being 'like that' too, but she could have really done with a friend. So if these Dementia Friends are actually going to be that, if they're going to actually visit people who are affected by this appalling disease, then I'm all for it. If they're just going to stick a badge on because they've sat through a training video, then it's just as pointless as most of the other schemes I've encountered over the last three years. I hope I'm wrong.

Be prepared to pay for home help such as a cleaner and shopping service

How exactly do you propose people do this? By wishing for a money fairy? Many carers work in order to pay their own bills, in addition to trying to help an elderly relative who still lives in their own home and simply cannot afford to pay for these sort of services.

I have a power of attorney for DM. it cost just under £400 to have it prepared and executed and then registered with the OPG. My solicitor is prepared to wait for payment until I've sold DMs house - because I don't have a spare £400 sitting around.

Not everyone has the luxury of being able to blithely pay for help for cleaning and shopping. We have to do it ourselves, as well as working full time, using all our leave to look after elderly relatives etc. That was a totally patronising statement to say "you're going to have to pay for a cleaner" like it is tuppence ha'penny.

Money does not solve dementia - but it sure as hell makes it a lot easier to deal with the daily consequences that it puts on other members of the family. how wonderful if you have the money to ease the strain a little, but please realise that not everyone has that luxury.

Oh - and the eating thing. Another one that chimes a chord. It took me raising blue murder in the hospital before they finally looked at DM notes and saw she'd lost about a stone in a month under their care. Ten minutes later and the dietician was there prescribing high calorie drinks. DM has COPD and basically expends so much energy just trying to breath that she needs a really high calorie diet. Which you would expect medical professionals to know and deal with.

The "martyrs" comment has made me so bloody angry. I am engaged with every service going, social services, care agency, alzheimers society and age uk, plus mental health team, and then some. District nurses, dietician, a charity. The majority have been as useful as a chocolate fireguard.

My mum had many health problems before dementia hit. She has Lupus, Heart Disease, suffers from blackouts due to Lupus, diverticulitis. She is on loads of different medications and often had to go for check ups to the different clinics which she was able to manage herself. But now due to mobility issues she cannot go to them alone and due to the dementia even if she could she would not be able to remember why she was there. I asked Social Services for help with these appointments. The mental health team told me that SS would just be able to book a carer to go with her for general appointments. SS said no way. There was nothing they could do. No one will take responsibility for anything. I tried organising hospital transport and then I would meet her at the hospital . 4 times I have used them, once they picked her up three hours early and twice they picked her up too late for her appointment.

The district nurses have made mistakes too numerous to mention with her meds and it is always me, a non medical person who picks up on it.

The care agency had different carers constantly going in. Dementia patients need continuity. Social services will not transfer her care to an agency specialising in Dementia (an agency who work closely with Alzheimers society).

If my mum did not have me fighting her corner every step of the way I don't know what would happen and my heart goes out to people with no family support. .

I do not wear the "it's my mum and my duty" badge thank you very much. It's my mum and I love her very much. She is frightened about this awful disease and I am never going to I am not going to do this and that because she would be heartbroken. She does understand how much I do, but she can't help what is happening to her and she gets frustrated and scared and I am not going to excaserbate that. I can say it but the who the fuck is going to do it. Who is going to manager her affairs, sort out her bills, listen to her fears.

I went on an 8 week course, 1 hour per week on caring for someone with Dementia, I have lived with it for a year so far and it is the hardest thing I have ever had to do. I still find it hard to understand and my poor mum blames herself. So excuse me if I do find the Dementia Friends rather patronising. A 40 minutes session and watch a few videos.

My heart goes out to people on this thread, Engeika, please try and get POA if you can. I did it myself so it needn't cost a fortune. I really feel for all of you who have told your stories.

Dementia Friends doesn't provide any sort of befriending service, it's just to get people to think twice that a customer etc might have it.

So many people don't seem to realise that you don't need a solicitor for power of attorney. You can just fill out the forms yourself. I'm about to register my mum's - I've not involved a solicitor at all.

That martyr comment is something else. Try being a carer for a dementia sufferer who isn't elderly - almost no help available at all, my parents can't even claim attendance allowance and as dad's self employed any time he's caring for mum is lost income.

Be prepared to pay for home help such as a cleaner and shopping service

When the day centre costs £40 a week more than you are given .. where the 'F' do you expect it to come from ? When you ask for help its not there . the Mh team - yes a team that visit every 6 months and do an assesment ( as its never the same person one) agrees that the paitient has gone down hill and off they go. Do they ask the carer how they are do they heck . Then when you do tell the MH team that you are finding it hard , not coping that well , the lack of sleep is really straining - they write it down and off they go.

Can you come back and say where and how you got help for the carer as I like many others would love to know.

As for helping the dementia people in shops and having more awareness -All dementia sufferers from now on must go out in purple hats with orange flowers so they can be identified by the dementia friends who can help them with counting change and crossing the road.

I am sorry this thread has caused so much upset. I am absolutely in awe of the carers out there, always have been. The services in this country are in a dire state, I agree.

I am fortunate enough not to have a family member with dementia so cannot truly understand the depths of despair carers must feel, although I see it every day. The only experience I have is in my professional role and through the little bit of time I give to a couple of local acquaintances. However, that is just a few hours, not a 24 hours a day thing, I know.

tonight I told my mother that she is moving to a care home on Thursday.

I think I told her this five times in less that an hour. We see lots of other families in similar situations at the hospital. All trying to do their best under impossible circumstances.

She isn't my mother any more. She is a confused, fragile old lady who has very little quality of life and it is only going to get worse. I know that. I have to switch off emotionally and just do what I hope is the right thing for her. Next step is putting her house up for sale - my childhood home - and disposing of virtually everything in it. And that is hard. Sometimes I feel weighed down by it all and just wish I could wake up so that it would all be over.

The only bright spot in all this is my dog. Mum loves seeing him as do the other old folk at the hospital - it's a community hospital with long stay wards for the elderly and they encourage people to bring in their dogs as it benefits the patients. he loves going in as he gets loads of attention!

Dementia is horrible and it gets very, very little funding. there isn't an "Old People in Need" or "Dementia Relief" event that is all over the media and TV despite the desperate need for more services for those with dementia and for their carers.

Being a dementia friend sounds very sweet but it isn't actually doing anything constructive for those who are affected by dementia.

I guess any awareness will help those in the early stages which is a good thing. I do understand the deep feelings of those caring for people with Dementia. DH and I were having yet another conversation about my Mother's future care when I saw a bit on the news about it and it did make me think ok. but what about the rest of the national disgrace that is Dememtia care ?

Dememtia is to me like dropping a stone into a puddle and watching the ripples, the whole family gets caught in the ripples. As seen by the many stories on here it can be incredibly difficult to get help. People can present amazingly well when they need to. I had one day when my Mum answered the door to me and she had clearly wet herself. She then sat opposite me with a vacant look on her face. My Brother spoke to her later and said the next day that she seemed fine and on good for. When someone presents as coping well they can't be forced to have help even if it is glaringly obvious to those close to them that they need it. Also if they are deemed to have capacity they have the right to make decisions that others consider to be unwise.

On the support thread in the Elderly Parents section there are lots of stories of people waiting for a crisis to happen, it's often all you can do and you just have to hope the crisis doesn't kill the person or indeed anyone else. If anyone on here would like to come over to the thread you will all be very welcome.

With the POA, people have sometimes found that their relatives are more receptive if a Health care professional or a close friend suggest it. Really hard if they refuse though as actually there is bugger all you can do until they do actually lose capacity.

flumpysocks your mother should be able to apply for Disability Living Allowance. It's for people under 65 and it's not means tested so your father's income don't affect it. Can you make an appointment somewhere like CAB to get help with applying for benefits.

My 80 year old MIL is my step-FIL's carer. She's had 2 strokes herself and is unsteady on her feet.

Step-FIL has advanced Alzheimers. He is incontinent, verbally abusive, and has attacked her more than once. He has also begun to sexually assault any unfortunate female he can get his hands on, no matter what their age. Up to now, he's refused POA, claiming she was trying to steal his money; now he's in no state to refuse anything so we think it'll be granted.

There's very little help for them. We're trying to get him into a care home before he kills her, but many won't take dementia patients and they cost around £1000 a week.

Still, it's good to know that Dave is planning lots of friends for him to replace all the funding and services that have been cut

Sorry Op, you have the best of intentions and it's not your fault. I don't think they've shown you the half of it, though, and, given what my step-FIL is capable of, I think that's unforgiveable.

Oh, and the reality of a care home!

He was in one for a week's respite care. Every time MIL went in to visit him (once a day), she found him lying covered in dried faeces all over his torso. She had to clean him up.

Once, she went in and found him lying naked and filthy on a plastic-covered mattress. They said it wasn't worth dressing him or putting bedding on because he'd just soil it again.

No wonder she's put it off as long as she can!

I think there should be more awareness. I did the dementia friends course (I'm a nurse), but I think more of the general public should be educated about dementia. It's one of the biggest public health issues after all

Oh but Elphie, surely everyone should be aware of dementia, just as they are aware of cancer?

There's no excuse not to be, none at all.

And videos and stupid schemes like this, instead of proper funding and any meaningful help, boil my poss. They really do.

Piss!!

I can only hope that my mum's physical health takes her before her mental health deteriorates to the extent of many of the loved ones spoken about on here. DM presents well and managed to hide things very well for a few years. The manager of the District nurses totally understands but the regular day dn doesn't have a clue. In a meeting she tried to persuade me that my mum was able to take her painkillers for back pain herself if they were left out and that she has a really good relationship with my mum. Mum hasn't a clue who she is once she has left. I am up against this all the time and this nurse has been advised on numerous occasions by her manager. Hence my total scepticism on Dementia friends.

The problem is that the woman in the video has very mild dementia. It is possible for her to live at home and carry on with her life with a low level of support. My Mum was probably at this stage for years before we even noticed, because she hid things well and put it down to 'silly me, what am I like, so forgetful' type comments.

The problem really comes as the dementia progress from mild to moderate and then severe. This is when people really need 24 hour help & care, and this is when it all falls apart because the system cannot provide it- so patients & carers alike are let down. So instead of looking to provide more help with the really difficult stages, this campaign has just looked at raising awareness of people in the stage which is easier to manage in the first place.

As someone said upthread, I just don't want this to be rolled out as some sort of provision for dementia sufferers when in fact it isn't. The money could have been more wisely spent.

Thanks Antihop, she does get DLA but frankly it doesn't touch the sides of the needs she has.

I am a dementia friend at work and have also spend 10 years looking after elderly people who have advanced dementia so I know how little it actually means.

Dementia is terrifying, and so hard to live with. Dementia care in the country is appalling.. Wearing a pin on your work pass lanyard isn't going to improve it at all but it was interesting from my perspective to do the course and watch people who had never previously given dementia a second thought sit up and realise how unutterably shit it is for the person who has it and every single person who loves them.

It's a good way to make people think about it.