Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Poor you. This has been going on for so long. Your dad must be exhausted. YOU must be exhausted.

The best I can do is send internet sympathy. Not enough. I hope he will accept respite. Not least it might help convince him that he is not indispensable.

We watched a very beautiful but gloomy film about dementia last night. Amour, which won the Palme d'Or at Cannes in 2012.

en.wikipedia.org/wiki/Amour_(2012_film)

Its on Netflix and deals with the partner left with the caring responsibility when dementia takes hold. You can get a months free trial!

Thanks NMS. I am.

Dad is being a PITA and saying he'll discharge himself against advice. Social worker has been on the phone to me asking about them both and seeing if I can exert pressure....

Well, crisis averted as the consultant says dad can go home . Social workers are going to make dad a client in his own right and be recommending a care package which they and I will be firm with him about. TBF, a social worker has actually been out this morning to see mum which is pretty good going.

Oh dear CMOT, really sorry to hear this. Glad it is being sorted though and that SS seem pretty on the ball. Can only imagine what that has done to your stress levels.

Bit of a long shot but is there anywhere local to them where they could both go for respite? I've seen a couple where they can accommodate couples where one needs much more help. I'm guessing g he would refuse to try.

He would refuse to go. TBH, he's scared witless of homes.

Its times like this I get so angry at the PIL who are refusing to think about the future, so I know we'll end up in the same bloomin situation eventually

Yes, thought you would say that.... Totally with you on the PIL Front. I am really cross that FIL refused to discuss it and isn't even in the UK. We live in fear of the phone going and emails from his neighbour. My Dad is the only sensible one of the lot and I know where he wants to go.

Notification has come through that the Health POA is registered which is a relief. Elderly services here are apparently in a bit of a state here atm. The CH have been trying to get someone to ring them back for 2 weeks now so Mum can be reviewed.

Hello everyone, sorry to hear of your troubles CMOT. Good to hear SS are sitting up and taking notice though. I can't really say anything new, it is just so hard to stand by and watch your parents struggle like this. But your Dad has made his own decisions and if it goes very wrong, you shouldn't feel guilty.
Update on my Dad, still at home with daily carers, 8am to 4pm, I have had no crisis calls for weeks. Don't want to tempt fate but I think they are pretty good. They did lose him the other day as he'd gone out before 8 am, and didn't contact me before 2 pm as they were dealing with it, eventually they found him a the hairdressers' at 4pm.
I was worried about the onset of incontinence as they reported he'd been incontinent a few times, when i was over there on Saturday it occurred to me to ask bro if he'd had diarrhoea- yes he had. There's your answer, it's the scary food hygiene (mostly because bro refuses to throw stuff out unless it is literally growing out of the fridge). Still I'll take a diagnosis of food poisoning over incontinece any day.
Have to take him to t he GP tomorrow. Then will take a day annual leave next wek to take him to the seaside (too busy on weekends, it brings out his aggression) and after that I am giving myself a 2 week break from visits, if at all possible. So I am in a relatively good phase of this dementia business at the moment.

Hello all. I'd be grateful for some advice about a Social Services assessment which is forthcoming for my mother. She's gone downhill massively in the last two weeks - getting lost at home, unable to remember things from 30 seconds before, very tearful and very confused. I have a meeting with her scheme manager on Friday (she's already in sheltered accommodation) and Social Services are coming to do an assessment in the next couple of weeks. What kind of things do I need to be asking? I think we'll probably need a carer to go in at least several times a week, if not daily. She will self-fund (I have PofA so should be ok) but really need to know how everything is put in place, and what the exact role of Adult Care will be.

Hi everyone- sorry about everyone's troubles, dementia is shit (and that's a massive understatement). Dgran has made gains with her sucking and her swallowing seems to have improved but on the bad side, she fell out of bed and although nothing is broken, she was very distressed and fought anyone trying to touch her- so she's moving into a profile bed with rails up on both sides.

HI Leopard. I hope the meeting went OK, it sounds like your mum's needs have escalated substantially and maybe things have moved on now. Has she regained some function or is she still quite disoriented? If so I would say she needs medical attention in the 1st instance, rather than social services input and the question will be whether she can remain where she is.
Yes dementia really is shit. Went to visit Dad on Thursday, his aggression really is quite hard to take, especially as it mostly occurs when I'm out and about with him, so adding a cringe making layer of embarrassement. I can understand the reasons- he finds the world bewildering and lashes out. It still makes it no easier to take. He verbally and physically attacked me when i told him he couldn't eat out of someone else's plate in a cafe (luckily I dodged the fork he was jabbing at me). There were more outbursts all afternoon, he only calmed down when we got home. Trouble is, he is obsessed with going out. You can't win.

Hello all, both my in-laws have dementia. It's horrid. MiL (much worse than FiL) is currently in hospital. She has gone downhill quite dramatically in the last month and has sadly lost her mobility and ability to follow instructions or complete her sentences. She's also got a urinary retention that so far only seems to be solved by an indwelling catheter, which I'm worried will be a source of infection. We are getting a hospital bed and hoist this week so she can return home, but will need extra carers attending 4x a day to hoist her in and out of bed (there is already a live-in carer). Masses of work needed this week to move the house around to accomodate this, as her old bedroom isn't big enough. She has some savings so self funding, but the costs are huge, so funds won't last very much longer. She is apparently almost at the point of qualifying for nhs continuing care, but not quite (thankfully as I wouldn't wish that level of need on anyone, but I would say her needs are far beyond social, so I do feel some contribution to costs would be appropriate).

Freckled we have found that social services often aren't all that interested once they realise you are self funding.

I would try and find out:

1. what services would be put in place if not self-funded
2. what the costs would be, and if it is possible to get the reduced rates that the authority gets (it won't be, but it's shocking how ripped off self funders are, especially when they are often much much better at paying on time).
3. what other agencies might provide the same level of care (then you can shop around and make a choice)
4. whether in their opinion, a bit more care might actually be appropriate (given you are paying and not them, you might consider it money well spent while your dm is with-it enough to appreciate it. A live-in carer for example can really help out with everything around the house, provide good meals and reassure your mother whenever she gets panicky and might make your mothers life much more pleasant if she gets on OK with them and has a suitable house). Often they suggest 4 15min visits a day, but actually a longer visit at least once a day may work out better, especially if eg you want a proper cooked meal and some tidying up or washing to happen.

Also,
5) What can be provided around the house to make things easier for your mother - this is usually done by an OT referal, but they can assess for things like stair rails, bath rails and bath chairs, walking frames, commodes and all sorts of stuff.

Hi , crashing coming in to ask for help . Seeing as I keep hitting brick walls. I have a parent 84 with vascular dementia and he is getting worse. Only carer is my mother. He is getting help via memory clinics and due to be re assesed in a few weeks. However my huge concern now is my mother. She needs help not willing to admit it but she is not coping. She has the attitude ' I have to deal with it as nobody else can'. My father is not ready for respite care as he is happier in his home and more settled. However I want to try and find a carer who can come and stay with him when mum just needs some down time . She can go and have her hair done and not have to rush back. I realise that a NHS funded solution is highly unlikely so we are willing to pay but I would like somebody who has an understanding and awareness of this horrible illness . I have tried age concern and alzheimers org and they have not replied. I am abroad and will be in the Uk in a few weeks so I wanted to get the ball rolling and try and get this sorted out...I am just not getting anywhere. If I read the government advice and anyone elses it goes on about carers needing to have down time , to take care of themselves etc but we can't magic wonderful neighbours or family out of the blue to do this..... Can any of you wonderful ladies on here help with who I could contact ?
Sorry for the essay I just feel so helpless !

Hi Rosa, my dad is much like your mum! The best help I have accessed for them is via the local carers centre who have got dad the financial benefits they are entitled to, helped them access an Age UK befriending scheme, and tried to encourage them to use the day centre/carers group etc.

An Alzheimers society case worker may be able to help find things too.

Dad found a local independant carer who they have been able to use ad hoc which has been useful. Do your parents go to church or some other social group where your mum could ask if anyone knows of such a person?

Thank you... no they only belong to an arts society!!! The local carers group is on my list but I need to call - I just wanted to try to get domething started that I can conclude when I am home as I can see myself getting nowhere .
I wish I was nearer- dad doesn't even talk on the phone now..

Thank you... no they only belong to an arts society!!! The local carers group is on my list but I need to call - I just wanted to try to get domething started that I can conclude when I am home as I can see myself getting nowhere .
I wish I was nearer- dad doesn't even talk on the phone now..

Hi all. Dads had alzheimers and vascular dementia for a few years. Officially diagnosed at 59 but we knew something was wrong well before then.

I get paid by direct payments to help mum look after him for 16 hours a week (although i am there 9-3 monday-friday, 4 hours a day on both sat and sunday and they come to mine 2x a week for tea)

I have a brother who lives 10 mins away who is long term unemployed who only comes on a saturday or when he wants to borrow money....

Im a single parent of 2 and I just feel exhausted.
Mum can't rely on any of her family and so I have to be mums support.
Sometimes i dread the thought of going to theirs.

I know mum has it hardest and I feel awful for venting on here but I have no one to talk to in real life.

Thanks for letting me vent.

Hi Ludoodle

You should feel awful for venting here, everyone needs a vent and if you're looking after someone with dementia, then even more so. Having no support is shit. Is there time to be able to go to a local carers support group? I get very anxious too...the responsibility weighs you down completely, you can't run away from it and there's no break from it.

On a side note, dgran has growing mobility problems which is frustrating for her as she doesn't understand that, so I suppose it's like waking up one night to find out your muscles have all been weighed down by some magic force, then waking up like that again and again and again. It's robbed her of her dignity and her happiness and herself, I can't believe she could walk to the shops and get on the bus herself just a few years ago...

Should NOT. Fuck my phone.

Hi Ludoodle. That's a lot of time you spend there - combined with the children it's not surprising you're exhausted. Is there any chance of your Dad going for respite for a bit to give you all a break?

I'm posting with good news for a change. My Mother moved to a new Home the Friday before last and she really likes it. I wasn't involved in the move (though saw it before she moved in) and plucked up the courage to go today. She's got a spacious room Which is very pleasant and is so much calmer than in the other place.

Thesarcastic Thanks for reply. I have no time for support groups unfortunately. Im also trying to juggle a relationship and kids tale up all my spare time. Sorry to hear about your dgran

Wynken Thanks for your reply. We are too worried about how respite will affect dad, as mum and he moved a while ago and it was traumatic for him. He really doesn't cope with change. The horror stories on the news don't help much either!!!

We will muddle on I suppose as long as we can...
I just miss my dad. He served a full army career and was the person i relied on for common sense. Just so sad to see him as he is now.

Am I terrible for sometimes looking at my Dad and thinking 'Just have a heart attack and die' because it seems like a kinder option for all of us. He has a UTI that has knocked him for six and he is so confused and just looked terrified most of the time yesterday. He held my hand and looked at me silently with a pleading look on his face. How do you stand this?

TTFAU - sounds completely understandable. Whilst medics are all patting themselves on the back for prolonging life, social care has yet to catch up with addressing the issues now faced by so many frail people with a poor quality of life. He should make a reasonable recovery from the UTI and is unlikely to recall this period of distress but yes it is so distressing to witness their bewilderment

Thank you. I feel so wicked for thinking that sometimes.

He's been admitted to hospital today after 3 days unable to move on sofa. In some ways good as I know he'll be more comfortable there, and he'll be safer, but bad because it'll distress him so much to be around strangers and on his own overnight. He panics if he can't see Mum or one of us near him.

I just wanted to wish everyone as restful a summer as possible.

We will be staying near my mother's which will give me a chance to see her more casually, eg take her out for a coffee, rather than the normal flying and chore laden visits. It will also be a chance to research solutions to current and future care needs, to increase the chances of things remaining on their current even keel. My mother's memory is getting a lot worse, though curiously her test scores don't show any deterioration.

She lives in a nice part of the country, so I hope it will also be a holiday. Teenage DC will be coming down at various points, and may bring some friends. I am really looking forward to decamping from London.

Thank heavens for MN as I just hate feeling so fucking useless. I hate this disease and if I see another person on TV or read another article on dementia awareness I will explode . These so called 'awareness help companies that charge a effin fortune - usual thing making a profit out of the sick and needy - bastards. i am pissed off that I am in the UK only for another week and I want to help more I am watching my dad get more and more confused , my mothers patience finish and she is mentally and physically exhausted . Trying to understand when it is the illness and not my father being stubborn and not trying. The mental health team are interested in him and 'see' a capable and active partner but they don't ask how she is. They don't ask when he gets up 5 times in the night for a wee its like getting up with a baby as he doesn't go quietly- Therefore my mum can't handle doing anything more than day to day things and any problem seems like a mountain( she is tired). My searches for a carer/ cleaner have been pretty useless as being in a 'summer' location many are busy . My DDs have been great and they just seem to accept it depsite Dh fears . DD1 went and got him and looked out for him when we went out.
The good days are fewer now and I now need to work out to get him into respite ....but I know it will sooo upset and confuse him just to try and give my mum a break.
My sister who lives nearer is good and visits but she visits she doesn't live it so doesn't really see it all.....
I have vented got it all out DH arrives today but he finds it hard to cope with as well especially if dad gets sick .
I don't want him or my mum to suffer anymore but there is no choice . have to be British and just keep calm and get on with it - as you don't have a fucking choice .....