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.

Really sorry to hear that CMOT, how stressful for you all . Hope your Dad feels better soon. Good to hear about the alarm company though - sound like the well and truly earned their fee.

Yes, dad had been a bit about having them, and it was only that the memory clinic Dr had said they should have them that swayed him.

What impressed me was that they checked up on dad later, and got the gp though dad protested.

Dad also tells me that he went to a carers thing this week where social services, Age UK, PALs for local hospital etc were and had a good complain about how they are treated. It looks like a monthly meeting, and as they served tea, biccies, soup and bread I think he'll be back again !

That is really really good and comforting to hear. Also excellent he's gone to a Carer's meeting - think I'd go for the food ! It sounds very good having access to the various professionals. It's great this has all happened without you needing to be around, good to see the system working.

Hello folks.

Hope you don't mind me posting here, but I suddenly find myself the sole carer for my rapidly declining dad. In January he was diagnosed with dementia after assessment at the memory clinic. He had a brain scan last week and I was told that he has vascular dementia.

He's been deteriorating really for about a year, but since September, and especially the last six weeks he's really gone downhill. He lives on his own and has been doing ok until recently.

He had a fall a fortnight ago, and broke his nose and needed nearly 60 stitches. He can't remember how it happened. Yesterday I had to ring the police who had to break into his house when I couldn't rouse him. We'd arranged that I'd take him shopping and when I got there, there was no sign of him. His key was in the back of the lock so I wasn't able to use my key, and despite me ringing constantly and banging hell out of the door there was no answer. I even climbed over next doors garden wall (that was a sight to behold!) and threw random garden objects at his bedroom window to no avail. I honestly thought he was dead. Or that he'd had another fall. He was just very heavily asleep. Huge relief, but god, I was terrified.

The paramedic that attended referred him to social services. Dad an I had a good chat and he agreed to having outside help coming in to remind him to take his meds etc. Social services rang him today. He told them there was nothing wrong with him, he was fine and needed no help. They asked him about a lifeline button, keybox and premade up meds and he said no to all of them. They then rang me and said that because he's said no to any outside involvement theres nothing they can do.

I could cry, I really really could. I'm a single parent with four young children and I'm struggling to be honest. I live about ten miles away from dad and I try to go up as often as I can, but sometimes I can't make it every day and I feel so guilty.

I'm really scared about what the future holds for us all.

hello deemented, so sorry to hear this you are welcome here. this is a really tough time for you and your dad who is probably scared. would his GP be able to persuade him to accept help. mums doc was the one who finally got her to allow the mental health team in after alot of refusals. please try not tio feel guilty we all do it but there is a limit to what you can do. you must take care of yourself as well as everyone else.

Hi deemented, that sounds really tough. I second getting the GP involved - they can change his prescription to the dosset box type, and in fact need to do that anyway as the extra cost is charged to the practice.
Dad accepted lifeline when the memory clinic said they needed it, and the keysafe was the v nice man from the council who fitted hand rails at the same time. But he wouldn't have asked for any of it.

I'd phone social services and give them a rocket for just phoning him (fgs, who phones someone with dementia to ask them these things) and say he didn't understand and needs visiting with you there as his advocate. Then give him a stern talking to that you need him to have these things and they are free so he should take them. I know its really hard to have to take on the parental role, and harder to lay down the law, but needs must.

Really sorry to hear this Deemented, that must have been an awful shock for you. I third ringing the GP. Do they have a Memory Advisor in your area, the Memory Clinic woukd have said if they do.

Also agree with ringing SS again. The language you use is important in this and you need to follow up with an email so it's in writing. Think you need to be saying things along the line of he has a confirmed diagnosis of Dementia and a recent fall. You have concerns about whether he is taking his meds and as to whether he is drinking properly and you therefore consider him to be a vulnerable adult and as such there are safeguarding issues regarding his current situation.

Say you are a lone parent with 4 children, are finding the whole situation very stressful to the extent it is affecting your health, plus you have a duty of care to your children and you would like a Carers Assessment . That yiu are concernef that if help is not provided you will be heading towards carer breakdown due to the demands of caring for your Father and 4 children on your own. You are aware he has declined help but that as is typical of a person with Dementia, he is in denial about his condition and unrealistic about his needs and you feel as a vulnerable adult he does now need proper assessment with you present.

You might ask for SS a capacity assessment.

If he has capacity to make his own decisions, then he has capacity to sort out a POA (care and financial) which will be essential going forward at a point when he no longer has capacity. (Tell him the stark choice is that when the time comes decisions making is in the hands of someone he knows or in the hands of someone effectively appointed by SS and charging.)

If he does not have capacity then he cannot make his own decisions, and SS have slipped up as he is potentially unsafe. They would need to appoint someone who can make decisions for him.

There is lots of advice available from the Alzheimer's Assn both their helpline and their Forum, plus people like Age Concern. Do some research and then speak assertively to SS. (Actually write to the manager - paper trails will worry them if they are on a less than sound footing.) My experience is that professional services around dementia patients recognise that capacity and decision making is complex (my mums capacity and decisions both change on a daily basis...) and they normally allow a sort of benign fudge, eg having you there when your dad was asked and letting you explain in a way that he would understand and accept the need for daily carers.

You might also speak to the GP, who will have his own communication channels with SS. Key words are vulnerable and "at risk".

It is unacceptable that they let themselves off the hook and leave the responsibility and worry to fall on you.

Have you looked at attendance allowance? Lots of previous threads here about applications.

Good luck. The transition can be the hardest. Your dad is probably frightened by the fact he cant think straight, and frightened at what might happen to him. Once a support system is set up and he feels he is coping better he may well be a lot happier.

Thank you all for taking the time to reply to me

I have an appointment tomorrow at the Carers centre to start the ball rolling wrt POA for dad. And on Thursday we go to the memory clinic again to see the consultant. This will be the first time since his actual diagnosis. I will tell her everything that's happened and see where we go from there.

I spoke to Dad today about Social Services etc, and he is utterly adamant that they did not ring him at all - and that he will accept any help they offer him. So I shall ring them again tomorrow and try and see what can be sorted out. I know they rang him - just he can't remember - mind you, I could ring them and he'll tell them the exact opposite.

He's also not been taking his tablets - I put them out for the week in a pill box thingy, and I ring him every morning to remind him to take them. He's been telling me he's taken them, but he's not. He says he only says it so i'll stop going on at him

That sounds like a plan. Honestly if you can get a care structure in place it will get better.

He is not going to remember to take meds. Are any really crucial, eg for diabetes? If not, do your best to get someone in to provide a daily prompt but try not to sweat the small stuff.

The POA is an important first step. However it will take about 3 months to come through. In the meantime you might see if he will sign a 3rd party mandate form from the bank so you also have access to his money. Then a mail redirect so you start getting his mail. My mum was happily giving out her bank details to any dodgy person who phoned plus she had got herself in knots over tax, insurance etc. If you accept you will have to take over, the earlier the better as their will be less chaos to subsequently have to clear up.

If he has a car, consider selling it, asking him to sign a SORN or have him sign it over to you.

When you get the opportunity I would ask both GP and consultant about progression, how long he is likely to be able to remain on his own without say overnight care, and what local alternatives there are when his condition deteriorates. It is not uncommon for family members to get close to breaking point before support happens. With young children you can't let this happen. So work getting as much information as you can so you can push for a more strategic approach rather than find yourself fighting for each incremental increase in care.

Most importantly take care of yourself, set boundaries as best you can and make sure to ask for help whether from volunteer organisations, authorities or family.

Meds wise, its just folic acid and iron tablets - but he's currently being investigated by the gastorentorologists as to why he's not absorbing iron. I took him for an appointment with them last week and they want to do an urgent colonoscopy and endoscopy - it's come through for the 10th April. I'm quite worried as I'm scared of what they'll find, but he's not bothered at all, and thinks theres a fuss over nothing.

I'm lucky in the fact that we both bank in the same place, and the manager mentioned to me several weeks ago that my dad had had several cheques returned etc. I took him into the bank and we spent several hours going through his finances. Everything I could, I've set us as direct debits to make things easier. I've been added to both his bank accounts, and have set one up specificly for direct debits to come out of, and the other for his pension and DLA to go into, theres also a note in the front of his passbook saying that theres a limit to how much cash he can draw out at once, and no cheques to be issues either. He'd forgotten to pay his mortgage a couple of months running, but as he was overpaying, thankfully he didn't fall into arrears. I've also filled in forms to say that he's happy for me to speak to people on his behalf. He had a direct debit coming out of his bank for the postcode lottery - £50 a month! I cancelled that.

He doesn't have a car anymore, thankfully.

I was about to tell my story but reading this thread makes me overwhelmed. Okay, will post my story next time.

It sounds like you have done really well already Deemented and a good plan to put into action. I know he needs the meds but at least he isn't diabetic or anything like that so it gives a bit of breathing space to get them sorted. Not taking meds has been something most of us on here have had issues with.

Sorry if you've already said but does he get Attendance Allowance ? If not then it's worth seeing if the Carers Centre could help you with this if he is eligible. When someone gets Attendance Allowance and has a diagnosis of Dementia, they are entitled to a council tax exemption. As your Dad lives alone, he would be exempt for the full amount. though if you do it you need to make sure the council send the form to you as the wording used is upsetting. Scrap the bit about Attendance Allowance, I see he has DLA. Think that is means he is entitled to the Council Tax exemption if he has middle or higher rate. I contacted the Council Tax dept, they emailed a firm and the Memory Clinic filled out the diagnosis bit.

I tried a post redirect once the POA came through . They send a letter to the original address which went down very very badly with my Mother, so something to be aware of if he is likely to be resistant. They've recently introduced a new form for redirects for special circumstances such as when you are applying as Attorney. Good luck with the Carers Centre today.

Miggy, hello and welcome, I'm sorry you have reason to be here. It isn't easy ani if this, take your time and don't feel under any pressure to post. If you just want to say a big 'aarrrgggghh' that's fine - we all get it.

I find internet banking on my mother's account works well. Her pills are kept in a safe (from B&Q - their largest is just big enough for the chemist's trays) and so I now leave a purse in there as well so carers can give her cash. But then my mother has a real habit of putting things in safe places and forgetting where thy are.

I did not set up a mail redirect on my mother's new flat as all that should have gone there were things like parish newsletters. Today's frustration however is why the GP and memory clinic continue to send appointment letters the4re rather than to me, despite clear instructions on file.

If a solicitor does the POA it is worth getting a few certified copies of the financial one to send off to people like the tax office, premium bonds etc. My experience though was that by and large it was easier to take the original into banks/tax office etc, and get them to copy. The forms were never straightforward so easier to have help when completing them.

And again worth asking the GP, or others who visit elderly people like the Vicar, for suggestions for the next step. My mother probably only just made it into very sheltered (own flat, but "restaurant", reception and 24 hour warden) but is very happy retaining as much independence as she has capacity for, and this has put back the need for a home for few years.

Hello, how is everyone today.
Just wanted to say mum's house sale completed today, the end of another chapter. It's also 11 years ago today that dad died. I feel a bit strange today tbh.

Its going to be strange Wyrd. Do something nice for yourself

The solicitor who did mum and dads POAs did 3 certified copies of each of them as part of the cost, and also kept a certified copy themselves just in case of need in the future.

Dad is having a week long heart monitor fitted today. He's fretting about what will happen if he needs a pacemaker. TBVH, I'm hoping that it might be the reason to get him to accept mum having a few days in respite

That's a double whammy there Wyrd. I felt a bit strange last Thursday when it happened. Think before then there was just huge worry about it not selling and dealing with the CH fees, then it suddenly sank in. I'm absolutely knackered today which I think is it all catching up. Suddenly realised earlier I need to get off my arse and start moving money around soon so it's not all in one place and that if I want to use this year's ISA allowance for her, then I need to move fast.

Can definitely see where you are coming from CMOT and know that I'd be thinking the same. Is your Brother on the scene at all? Mine claims he's getting on a plane on Thursday with a view to meeting a friend in Greece after a Dubai stopover to break flight up. Idea being he'll be much closer when the call comes about the other CH. DH and I raise an eyebrow and wait....

However he has been much more understanding of Mum's condition and what she can be like. I'm finding I useful to be able to talk things through about her and be far more on the same wave length, same continent woukd be even better. Hoping he doesn't totally go off the rails on his birthday which is one of those ending in a zero. Sunday I'm taking Mum out for coffee for the first time and hoping she won't kick off about going back again

Hope you don't mind me joining in.

My mum is 90 and has been living independently (but with a good support structure - supplied mainly by my dsis who lives a couple of doors away) for a couple of years since dad died. I live 200 miles away but visit regularly and, on my last few visits have noticed her becoming more forgetful and emotionally distant. But we put this down to probable depression, loneliness, very poor eyesight, failing hearing etc.

She had a fall a few weeks ago and seemed OK. Refused to go to hospital to be checked over but woke up in the middle of the night in agony about 10 days later. Went into hospital and was given lots of morphine which knocked her out/made her very groggy for a couple of days. She was also diagnosed with a kidney infection. We put the massive increase in her confusion down to the morphine and infection but, 2 weeks later she is still confused. The infection has cleared up but she has also lost what limited mobility she had and has been 'discharged' from the ward and installed in an intermediate care place within the hospital to see if they can get her moving again.

We have been told she has 'significant cognitive impairment' which will not improve. But I wondered if anyone here had any experience of the types of symptoms she is displaying:

I always feel 'confused' is the wrong word to use as she is very clear and unhesitating in what she says. She is very articulate and when she is awake and alert it is possible to have a brief conversation with her that makes sense. One doctor wrote 'not confused' on her notes because she seemed fine to him and she passed the tests about knowing where she was, what day it was, counting back from 100 in 7s etc. But then she will start talking about bizarre things. Principally she is convinced she knows most of the people in the hospital. The woman opposite her on the ward was my MIL (she maintained that all the time she was there); my 17 year old son apparently works in the hospital and is being difficult in wanting to be known by another name. My dsis and I are interchangeable. DH is currently on a cruise (he wishes!). My niece manages the ward etc etc. Then she will have a sensible conversation about what grades ds might need to get into uni!!! She forgets where she is, that my dad is dead and asks if he's gone to bed; points to figures in other beds and says, 'look at your dad - I told him not to overdo it and now he's worn out'.

I'm assuming that 'significant cognitive impairment' = dementia. But it's not what I imagined dementia would be. It's more like she's dreaming and hallucinating. Anybody have any experience of this sort of behaviour and such an extreme escalation of symptoms?

Hi Stonecircle, everyone is welcome here.

What is going on with your mum sounds like delirium - this suggests that up to 56% of older people will experience this in hospital. Some people have underlying dementia, but the delirium reverses wheras the dementia doesn't

Doesn't make it any less distressing for you all though I'm afraid

Hi Stonecircle, I'm sorry to hear about your Mum .Delirium sprung to mind reading your post as CMOT has said. The psychiatrist who diagnosed my Mother mentioned it.

CMOT - I looked at the link and delirium does indeed seem to fit the bill - particularly the hallucinations. It came on very suddenly although there had been the odd episode in the months leading up to her going into hospital. For example, she was upset by something horrific she had seen at the end of one of her favourite TV programmes - we played it back and what she described simply hadn't happened. On occasions she would be adamant she had heard people come in or moving about upstairs when they hadn't.

But these were isolated incidents and since she was hospitalised I would say about 80% of what she says is delusional.

Hospital are very clear they can't do anything for her medically but are focusing on her mobility. Wynken - what happened with your mum? Did they offer any treatment? Did it wear off at all?

Sorry Wynken - I've just read through the thread and can see your mum hasn't improved.

My mum is 90 and has always been as bright as a button, putting the rest of us to shame on occasion with her sharp intellect. She has all sorts of physical problems - severe arthritis, macular degeneration and cataracts, poor hearing, heart problems etc. We never in a million years imagined she would develop anything like this and it has come on so suddenly we are still reeling from the shock.

Hi stonecircle sorry to hear about your situation it is a huge shock especially when its a sudden decline. I hope you can get to the root of it soon, keep us posted.

Wynken- I have to do the money shuffle too, you may already know it but I found a website that gives details of which banks/building societies are owned by which banking group as some have merged and you may end up only being eligible for one amount of £85k, as its worked out per licence.
www.thisismoney.co.uk/money/saving/article-1630421/Savings-compensation-protection-Bank-ownership-licences.html

I was a bit misleading Stonecircle, please don't worry. He was talking about it as an aside. It stuck with me though as I hadn't realised what Delerium actually entailed before .

Thank you Wyrd, that is helpful are you feeling earth shatteringly tired as well at the moment? I think it kind of catches up with you.

i am actually wynken, since the sale completed i have no energy, you keep on going to get things done then your body says no.more.