Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

It is good to hear people looking out for vulnerable people. Mum had 3 neighbours and the postman keeping an eye on her though she had no idea.

Agree with ringing the church to get specifics which could be helpful knowing further down the line. I also totally get how overwhelming it must feel to get a letter like that and know you need to deal with it in the middle of everything else going on.

Glad all ok today your end CMOT and I hoping Mr PostBellum senior is home and settling in.

Rang the Alzheimer's Society today to ask if they can recommend a counsellor who specialises in Carers of Dememtia suffers. She didn't know anyone but is asking her colleagues tomorrow. It hit me that if Best Interests Decision says she stays where she is then she is likely to refuse to see me again (apologies if I already said that). My Brother has said he will apologise if she has to stay in the flat as I know he thinks she'll be sent home but I suspect he'll flip out again and I think I want some support on hand to deal with the fall out.

My Brother has suggested I apologise to Mum to build bridges ready for when she comes home and that her attitude to me is all about it being my fault she can't come home till the meeting. That's because he hadn't seen the increasing paranoia that had been building up about me before all this and how nasty she can be, even on that day I picked her up early from respite. The only good thing about this is my Dad and his partner have been hugely supportive and we're all much closer now that I've realised the majority of what Mum told me about Dad over the years is rubbish.

DH's Dad (87, Parkinson's and diabetes) flies back for his annual fortnight. There was a letter about him recently from concerned friends so I'm keeping my fingers crossed he will be ok and able to return at end if his stay. There will inevitably be a crisis with him soon though.

Reading that back I think the solution may be to take up drinking on a more regular basis !!

Just wanted to say hi and thanks to all for your kind and wise words. Still recovering from visit to dad today with 2 boys, culminating 20 mins ago when one pissed on the other in the bath and all hell broke loose. Plus someone else from church collaring me at train station with that meaningful look. And trying to keep dad happy all day, the slightest thing sets off his irritation/ aggression. Seems like every time i go to dad s people are jumping out of the bushes to ask me what i ll be doing for him. OK, OK I know that s paranoid. Dad has definitely taken a turn for the worse cognitively in the last 4-8 weeks, it s what I've been dreading for the last 3 years, the time I have to think about him moving out of his house.
I'm so raddled I can' t post much, but thanks again to all.

well fil is in the care home

it all happened really fast, ch manager agreed he could move in on Friday, finance meeting Tuesday and we moved him in Wednesday.

we took the kids and mil to the beach yesterday as it had been decided to leave him 24 hours to settle before visiting, spoke to the home this morning and he has settled really well so far, he spent yesterday in the garden and watched some tv in the evening. mil is visiting this afternoon and tomorrow dp and I will move the last of his things in. we've ordered him a double bed so he will be more comfortable.

relief that he is somewhere safe where he can stay indefinitely is overwhelming, dp and I feel a bit lost now that we don't have to organise fil as even when he was in hospital we had to take food in (he refused hospital meals) and visit daily.

the next issue we have to face is that he thinks he's only there temporarily despite being told repeatedly that it's permanent so when we take his things in he will kick off, he told us when we said we had ordered him a bed not to bother because what would we do with it when he goes home, he tried to send all his shoes home because he only needs one pair and his slippers for now.

sil is really pissing me off, she hasn't visited fil for 2 weeks because she ran out of petrol money (fair enough) but has now text asking if dsc would like to go to harry potter world at the weekend - her treat so we can have a break, no mention of fil.

We don't need a break from dsc we haven't seen them since June and want to spend time with them what we want is for her to visit her dad, if she can't afford petrol how an earth can she afford harry potter world for 3 adults and 5 children

Morning all - sorry to hear about your exhausting day whatabout. It does sound as though your Dad needs to be assessed or re-assessed.

Wynken - will be keeping fingers crossed that your Mum is less negative towards you. The only thing I know, is that dementia seems to continually change the minds of those who have it, so hopefully your Mum will come around. Not sure if that is comforting or not.

CMOT - glad to hear that your Dad is pleased to be having his op. Will keep fingers crossed for him.

All seems to be going well so far with Dad. He was exhausted after his discharge from hospital yesterday & slept very heavily last night. I suspect the problems will start up when he is less exhausted and starts all the night time waking again. I'm hoping that Mum will keep the night time carers going.

Anyhow, after much fretting, I am going on holiday. I booked it way back before all of this happened in January and I have worried myself into a small hole about whether or not I should go. I have no life outside of work, caring for children & caring for my parents & I think if I don't go, I may die a bit inside (sounds silly, but I know you will all understand what I mean) - so I'm going. My DCs also really need some of my undivided attention and fun time with me.

Bob that sounds awful though I'm sorry. It's hard enough doing this with older children, never mind ones at the age where they piss on each other in the bath! You sound as if you need a break for a couple of days to get your head round it all. One thing though, is there any chance he could have a UTI, other infection of some kind or be dehydrated ? And do you think he might not be taking his Aricept ?

Smiling, really glad he's finally in there !!! I was told to not take anything else in for Mum in case she asked for it . Guess it's a bit different as we don't know where she will end up. I think a fair percentage of people in homes always think they are staying as a temporary measure. That would really piss me off with your SIL. The whole not getting it thing clearly isn't confined to the males of our species then!

x-posted & missed Smiling's update - fantastic, so glad your got your FIL in somewhere. That is great news.

Grrrrrrr, my frigging useless lump of a brother has put dad into a total spin by describing his surgery as major. Its not, its a totally routine operation that has a tiny blood loss, no stitches, and if dad was in good health he'd only be in a night. So I've spent an hour talking dad down from a point of high anxiety.

For the first time, my mum wasn't able to get my name out yesterday

OH CMOT I am sorry that must have been a difficult moment.

PostBellum you are right to go and do understand what you mean about if you didn't .

I can't say what a relief it is knowing Mum is safe these days though I really wish it wasn't in these circumstances.

Dad has had his op (done under spinal as he was too high risk for a GA), is fine, and marvelling at the care he's getting. This'll be the first full nights sleep he's had since March, and he's loving the food.
Mum seems to like the carer, which is brilliant

So glad your Dad is Ok CMOT and that is excellent that your Mum liked the Carer.

I rang to see how Mum is doing today and apparently she is absolutely fine.

Post Bellum, I hope you are enjoying your holiday and that this gives you a chance to gain perspective and see solutions. Pretty impossible when you are drowning in day to day crises.

Smiling. I hope you dad is settling and that your mum gets some well earned respite.

CMOT too. I hope the way forward becomes clearer, as your dad gets a bit of care and rest.

And Bob. It sounds as if things are becoming unsustainable. I hope a sensible way forward becomes apparent.

Lastly I hope the WBNs case conference works out in the way she wants.

Did I leave anyone out. I hope not.

As for me. My mum aced her recent mini mental test. Extraordinary given she was completely surprised when I turned up to take her there, despite several reminders. Then last night she had her first "sundowning" episode where she phoned up, something she normally never does as she has a bit of a thing about others having to phone her, sounding lucid but completely unaware of where she was. Quite a surreal conversation. I sense these could become a pattern.

Hello, can I join? It feels like a guilty secret, almost. No-one really wants to hear about my mum except my brother and sister. I have 3 DC, one with SN and am recently divorced, so a single parent. It's really hard to stop feeling guilty about not doing my share with my mum.

She's got vascular dementia, is widowed, my dad died 9 years ago, and lives at home with care workers coming in twice a day. It's enough at the moment with my DSis having moved around the corner from her, but I live 50 miles away, can't justify moving closer as my DS2 is really settled at school. My DB has just taken early retirement, has been caring for his FIL for the past 15 years, FIL has died and he and my SIL want to do a bit of travelling. I can't blame him, but my DSis feels bitter. I do her shopping for her with Tescos online and visit her once a fortnight, but it never seems like enough.

Mum has recently started being paranoid about her neighbours. They are actually lovely, but have put the house up for sale and it's unsettled my mum. She keeps imagining they are whispering about her, that they've been in her garden, in her attic and are spreading rumours about her. It's all in her head but we don't know how to calm her without upsetting her. I try to say that she hasn't heard them properly (which considering she's very deaf isn't a surprise) but I have chickened out of saying its in her imagination. She knows her memory is shot and she finds it upsetting, but she's always been a passive, gentle soul and her paranoia and upset over her neighbours is very out of character.

She's on a course of precautionary antibiotics in case it's down to a urine infection, as that has affected her in the past. Worried that it's a permanent decline though and also worried that she may have to go into a more secure residential home. She's very shy, private and unsociable outside the family and would much prefer to stay at home.

I'll go back and read the last few pages of the thread, now. Didn't realise how much it was worrying me.

Welcome EllenJane - I have the urge to call you knickers so apologise in advance if I do ! Sorry you're in the parent with Dementia club. The guilt is very familiar to all of us but with the best will in the world there is a limit to what you can do and you have nough on your plate right now.

My Mum has been paranoid about the neighbours in the past and we have been through a fairly recent phase of hallucinating people knocking on the door at night. I chickened out of saying she was imagining it but the Memory Nurse came round and did gently suggest it. To my surprise she accepted it and said she'd also hallucinated David Cameron in her bedroom.

Who is she seeing for her Dementia, wonder if you could have a talk with them for suggestions on how best to approach this? There are medicines that can be prescribed for paranoia but our local service don't like to do this unless the paranoia is really upsetting someone. Do you think maybe you could talk to the neighbours and explain what's happening and maybe ask if they would consider sending her a card saying they will really miss her but need to move for whatever reason and will find someone nice to buy the house so she has lovely new neighbours ?

That is a big ask of them but I have found Mum's neighbours to be lovely and really keep an eye out for her. Mum has Vascular Dementia as well and I have found there are dips which have probably coincided with a small TIA. After a bit she seems to recover a bit. Fingers crossed this is a UTI or something and she improves soon.

Sorry you had your first sundowning experience Needsmoresleep. I think my Mum flipping out over the lost coffee and climbing stepladders was sundowning.

Still no news as to when the Case Conference will be, September at a guess when everyone has had annual leave.

Thank you for the welcome, Wynken. I'm usually EllenJane something, but knickers is fab!

I might call in on the neighbours next time I'm down. A card from them sounds a great idea. It could be referred to as often as needed, I guess. She's only seeing the GP so far re her dementia. They have prescribed the precautionary anti Bs. She's borderline diabetic as well and on a cocktail of medication which they put in blister packs for her now, which helps. My sister is her main carer, though. I'm really glad we got lasting power of attorney sorted a few years ago.

I see you have been looking into a specialist dementia counsellor, not sure my mum would countenance talking to anyone outside the family. Hope it works out for you. Actually is the counsellor for you or your mum?

The moving away neighbours are lovely, but very young and mum is very private and has never really talked to them. There are other neighbours who keep an eye out. She's lived there for 50 years and some neighbours have too, so there are some long standing relationships. My sister is in the next street, now as well. Neighbours on the other side are decidedly odd and fairly unpleasant, unfortunately, but the paranoia isn't about them, for some reason.

Knickers it is for now then . Have you got both LPA's ? We messed up not getting the health and welfare one sorted in time.

The counsellor is for me. I have a feeling if the Best Interests decision is she stays where she is then she will refuse to see me again. I've come to terms with this to a fair extent but figured some extra support in case I need it wouldn't be a bad idea to have on tap.

My Brother apparently told DH he would apologise if it is decided she stays but I'm pretty sure that's because he is confident she will be sent home. If she has to stay I imagine he'll be shocked, it will be my fault and no apology.he told DH in an email he feels the rift between us is too deep to ever heal and I think he's absolutely right. The whole thing seemed very sad a few weeks ago but I accept it for what it is and actually feel ok about it. It's amazing what you can deal with when you have to.

As a result of this I have become a lot closer to my Dad and his partner and friends have really rallied round so not all bad. I've been busy and have done my CV and my old boss has agreed to do a reference. I've managed to get in the grand total of 2 applications the last week. Very early days yet but I feel very positive about the whole process and have a much clearer idea what I want to do, which was an issue earlier on the thread and I felt I had left it too late.

Welcome EllenJane, sorry you find yourself here. It sounds like you have a lot on your plate quite apart from your mum.

Getting the neighbours to write a card sounds like a great idea. I've been surprised how people around my parents have been unexpectedly lovely and helpful to them, so I'm sure they'd understand.

Well done on the applications Wynken.

The solicitors obv sent a letter to my brother advising him of the LPA being done this week. He rang my dad (hadn't called to check while dad was in hospital, or done anything useful) to say that he wanted to be named on it too. Dad just said he'd see
Not sure why brother thinks he should - I don't see him online ordering incontinence pads, organising people to call mum between carer visits, etc etc etc, let alone calling them everyday so how would he step up to managing everything if dad wasn't there?

I'm getting into the abbreviations now. I have a nasty feeling the LPA we got sorted was only the financial one, not a health and welfare one. I take it they are 2 separate things? I'll have to check with my DSis who organised it. At least we haven't fallen out over DM's care, but things are a bit tense between my DB and DSis, well, my SIL and DSis really.

Wynken, I'm so sorry things have got so bad between your DB and you. From reading back it sounds like you have the moral high ground, even if it's painful. I'm glad your relationship with your DF has strengthen, though. I hope some counselling will be useful, it sounds very hard.

Hi, CMOT. Your DB doesn't sound much cop, either. Glad your DF's OP was a success. I take it he's your mum's main carer but falling apart a bit himself?

Yes, bless him, he's 78, no feeling below either knee due to diabetes (which is currently well out of control), can barely walk, very breathless, and generally manky. As mum isn't very nice to live with, he's found becoming a carer very, very hard and even harder admitting he needs help himself. But we're getting there slowly.

So glad I found this thread.
Dad will be 80 next week, has dementia and is terrified of being "put into a home". It is getting to the stage where he can't cope alone but if I contact social services can he be forced into care? He has some savings and owns his own house. Is sheltered housing a better option. I just don't know where to begin. He can manage his own personal care etc but is increasingly confused about where he is, who he is etc. He is adamant he won't go into full time care so what are my options?
Have three teen Dcs in a two bed flat so no room here.I am in scotland

Your poor Dad CMOT. I really hope your Mum accepting Carers is a big turning point for them both.

Hi Dementedma. I don't know how things work in Scotland I'm afraid. Down here they do try and keep people at home for as long as possible as it is the cheaper option. If he has under 23k in savings he would probably be given some financial help with the costs of a care package for care at home, even if he owns his home. If he had to go into a home at some point then the house would be counted and he would have to pay.

There's something called Extra care housing down here but not many of them if you'r not entitled to the council run ones. They have a 24 hour manager, restaurant, help with cleaning and a care package can be arranged. I called www.eac.org.uk who can advise what options are available locally .

There's also something called Telecare which can help with detecting falls and things I believe but we didn't get that far. If your Dad is being seen by a Memory clinic or something similar they are a good place to start.

Thanks. I'm going to go to social services tomorrow to find out more. I'm sure he must be able to get someone coming in every day to check on him at the very least.

Its also worth contacting AgeUK and looking for Alzheimers Society contacts in your area - the charitable bodies have been brilliant in helping my dad find out what is available locally.

I'd say if your dad has a dementia diagnosis, then a move to sheltered housing probably wouldn't be good as they really only provide someone to contact daily, not any care.

Good news today - dad is delighted that he's been awarded higher rate attendance allowance, and its been backdated, so that was a nice little bonus after all he's paid out recently.

But another microwave has bitten the dust. So I need to find a very, very easy to use one for them!

Excellent news on the Attendance allowance CMOT I'm going to apply and see if Mum might get it soon. Might be worth posting on Talking Point about the microwave, I bet a few people will have researched them on there.

DH has just commented that he's found he's eating less rubbish the last few weeks and I've been doing the same. His blood sugar is much more stable. I'm absolutely convinced it's down to not having that huge underlying stress of the phone ringing anytime with another emergency. Although I've got a very long way to go to lose the best part of 5 stone I piled on with the stress of it all i must have lost a bit as some of my smaller clothes (I have a collection of sizes !) are starting to be closer to fitting again. So I'm attacking my house with a cloth to burn off calories.

We saw FIL yesterday who is 87 with Parkinson's and diabetes. Friends had written to SIL saying they were worried about it and I was concerned as to how he'd be. He actually wasn't very different to last year. However he gets very cold all the time and SIL says he sleeps loads. I suspect the grafts he had done 10 years ago during a triple bypass are starting to fail/block hence the cold and sleeping. But am not a medic and could be very wrong and don't want to upset DH and SIL so haven't said anything as yet. Any thoughts on whether I do ? DH pretty up on health and I suspect he might think the same but not want to properly admit it to himself. I'm not sure FIL would survive a surgical procedure as he is very frail.

I couldn't find anything very up to date about microwaves (apart from v interesting info about activating child locks on them) on TP, but it seems like the uber cheap Argos microwave just has two very clear dials to use, so I may just order that for them.

Great to hear your dh's bg is getting better, and its great you are starting to lose some weight. You are welcome to pop round to mine and clean for more exercise.

How is your FIL with his diabetes? Dad gets vv cold from his neuropathy. But your FIL is v elderly and it is an age where it seems the need for sleep is much more generally, and if his parkinsons means he's a bit thinner, he will feel the cold more.

You might well be right, I'm probably still in disaster mode from Mum. He is very thin, not sure how he is with his diabetes. It amazes me he lives on his own with little help still. When I'm finished here I'll be round to yours CMOT!

That's a pain, I thought someone would have done the microwave thing on there recently. Our microwave seems to work by pressing one button repeatedly putting 30 secs on the clock each time. We never quite got round to reading the instructions as to how it is supposed to work properly. Those ones with a round knob you twist to the right time and press start are pretty simple.